I collapsed and my sister found me passed out unconscious. Woke up in hospital after being unconscious for 2 days. I knew I was very sick. Diagnosed with SLE (Lupus) over 20 years ago. Then diagnosed with Central Sleep Apnea (CNS means unknown cause) had supplemental oxygen. Then went through bad divorce…. The myositis was recently added and my Rheumatologist is trying to tease out the why’s of my CK levels (being in the Thousands) when I was hospitalized. Thank you for sharing and being your beautiful self! This type video is very helpful. You do look beautiful, so I understand the whole, “you must not be sick because you don’t look sick”, thing! I too looked fine, so how could I be so weak, in pain…. I am somewhat better now but on my path of discovering just how difficult full and accurate diagnosis is. It takes time, and full disclosure with your doctors! The small details matter too! Add the weight of Covid on the medical community and it’s especially difficult. Bless all seeking answers to being able to live their best life! 🥰
Thank you so much for sharing your story. I’m 26 years old and I was diagnosed last November 2019. I am still in need of assistance and often times feel the need to give up, but hearing your story and how after everything you’ve been through you now have a family and are persevering has inspired me to push through. God Bless you!
Mia Togle Aww 🥰 Thank you sooo much!!! Don’t ever give up! You are not alone. Please feel free to come on here anytime to vent 😠 or celebrate 🎉 and keep me updated on your journey. Checkout Myositis Support and Understanding on Facebook and The Myositis Association. I work closely with both organizations 💙 My Facebook page is Polymyositis Bringing Awareness look me up!
Hi, I was diagnosed with dermatomyositis on July 8th of 2020, I’m a 43 year old mom of 5. My symptoms started just like yours, but years ago. In my late 30s I was diagnosed with RA. When I went in the hospital my ck was 19000. I spent 2 months in the hospital/ rehab. I had trouble swallowing, taking a deep breath. I couldn’t walk , feed myself without severe difficulty. I couldn’t do anything! This has truly been a learning experience, and I’m still learning. My current status is , I currently have a hospital bed at home, I have to sit in a lift chair because I can’t get up from low places, I have a walker and wheelchair ramp. Only because of God am I still here. I smile all the time and I’m extremely grateful. I know I’ll get better, I went from being a home baker, to not even being able to cook. Thank you for your story. I’m still trying to learn as much as I can.
I am so sorry to hear about your diagnosis. However I can already see the beautiful testimony that is about to evolve in your life. So, thank you for being bold enough to tell your story. Please keep me updated on your journey! The Myositis Association will be having a Women of Color webinar on this Thursday! I would love for you to register and attend. I will be speaking. The information is located on my personal page under Holly Jones, The Myositis Association Facebook page, and the Myositis Women of Color Facebook Page. I am also the creator of the HERstory In Color Facebook page and Private support group if you would like to join. HERstory In Color also has a UA-cam channel. Another great place for support is the from Myositis Support and Understanding. Look them up on Facebook. I will continue to keep you in my thought and prayers. Keep the positive spirit, the beginning is a process, but it gets better. Please come to the webinar!
My wife "45" this past week just received an initial diagnosis after having CPk on Tuesday and EMG/Nerve Conduction Thursday. Started 60mg Prednisone Friday. She will have a Muscle Biopsy in the coming days. Going back 10 years we see now precursors she had/has that were warnings but no physician ever showed concern. 18-20 months ago she started a new job which was more physical than any other she had ever had. Almost immediately she started complaining about soreness and pain, mostly in feet and hands but managed through it thinking it was normal from using new muscles and being on her feet. May 21, 2019 she was diagnosed with Osteoporosis, within 3 weeks she developed extreme pain head to toe with reduced flexibility and weakness. Physicians ran blood test and treated as if it was Fibromyalgia and Arthritis. Several medications which provided no relief but she continued to work and was bed ridden on off days. It has taken since then to now to see a Rheumotologist which almost immediately knew what the problem is. Sorry this is so long but i my concerns are the length of time this has gone on without treatment and the severity of pain she has. I know my wife, she isnt a wimp and seeing her cry from pain and not move is killing me. I feel hopeless as if there is nothing i can do for her. If anyone has advice, similar stories, anything in support I would be grateful in your response. I pray and hope for you all. Thanks
Daniel Marty I am a member of two organizations: The Myositis Association and Myositis Support and Understanding. These two organizations can help you with resources and education. Every year in September The Myositis Association has a conference that is very informative and gives patients and their caregivers a feeling of “family” as well as different educational sessions to attend. Next year it will be in Seattle, Washington. Please inbox me on my Facebook page under Polymyositis: Bringing Awareness so I can give you more details. My husband and I are the support group leaders for Myositis in the Houston and southeast are of Texas. If you live in the area or plan to visit please contact me. Your wife is taking the proper route to her diagnosis and treatment. And with you making this post, I’m sure you are doing a great job. My husband has been in your position for the last 14yrs. You are not alone nor are you helpless! Please keep me updated on your journey together!!!
I have alleviated CPK but the EMG test comes back negative. No one knows not even my Rheumatologist. Being so stiff causes you to just want to sleep all day but many thought you are just lazy. Sometimes leading to depression since you are indoor and receive very little sunlight. I am now also having multiple issues such as Sleep Apnea, Pneumonia, dry cough, pre-diabetic, unexplained abscess, and lymph nodes, Acanthosis nigricans. For years I thought I have Lyme disease. None of this symptom has a cure. I tried to exercise but it was just a losing battle against inflammation. Eating healthy help. Avoid processed food, try to avoid none Kosher. Good luck!
@@myolife26583 Update. My amazing wife has yet to miss a day of work and has managed to continue the odd jobs she has done for others for years. She is so strong mentally that i honestly think she could climb mountains. With that said I am the only one who sees her at home when the exhaustion, pain and depression are released. Currently the Rheumatologist is dropping the dose of Prednisone and has introduced Methotrexate in an attempt to get off the steroids. New symptoms in her hands where the skin is cracking and splitting open. This may be Derma symptoms but will need to follow up on the next visit to our Rheumatologist. Last blood CPK level had dropped below 500 which is encouraging and the main complaint at this time is having no strength and very limited flexibility. I want to say again to you and all going through this life that you are amazing people. It seems everyones symptoms are just a little different from eachother and you all as individuals are fighting your battles in a way that works for you. I hope and pray for you all. Now. My frustration with information online. It is a joke. The general explanations and symptoms do not do justice for what people go through with this disease. Medical sites need to do a better job. Start by saying this is a TERRIBLE thing. Dont sugar coat it and use soreness or other politically correct words in the description. Sorry. Had to rant. Love you all.
Daniel Marty Thank you for The update. There is no such thing as ranting on my channel. I want everyone to know that this is a place where you can come and tell your story or speak about what you’re currently going through, and maybe we can all come together and find a solution. I personally don’t care for Methotrexate. It didn’t work for me or some other people that I have spoken with. Imuran also known as Azathioprine works for me. 500 is a great number!!! I wouldn’t start tapering off Prednisone until after being in “remission” for at least 6 months. Because I would hate for her to taper or stop. Just to be increased again. However, I am not a doctor 👀 😂. Does your wife qualify for physical therapy? And you are absolutely correct on how the disease is defined online and in books. It is horrible!!! Hopefully one day there will be a cure.
Sir I have also same problem but after treatment of 8 months now I am ok and better now .june 2019 I badly suffered from muscle pain fever lungs problems cannot walk or up on the 🪑 and other lots of problems my doctor prefers me to predinisolan 60 mg,vitamin d3 60000 lU every week , potacium and 500 mg calcium every day.my doctor decrease predosolan 10 mg after every two months .now I am well do all types of activity easily but hard work is aviod by me.now predenisolan is left but other medicine is continue. I live a normal life with my family.
I actually just looked this up to hear peoples experiences with polymyositis. I honestly did not know it could get that bad. I hope you completely heal and recover from this condition.
Sadly, there is no known cure for Polymyositis, as of currently. There is some people who can live without any treatment or medications, but more commonly you are on some form of medical treatment/s for your life.
Thank you my dear sista for sharing. I can relate to everything you have spoken in regards to this disease. I also was diagnosed in April 2016 with myositis with a cpk count at 31,000 which landed me in the hospital. I was so weak not able to take a top off a bottle water. You have really encouraged me to tell my story on youtube and with many others with the hope of we can still live and enjoy life. I pray that God continues to give you strength from day to day.
R W aww thank you so much for your kind words and encouragement. Please keep me posted on your journey and subscribe to my channel. I’ve been absent for a while but I’m going to start back vlogging soon!
I was diagnosed in 2012 after coming down with Guilliam Barre. It was the most difficult time of my life. My doctor put me on steroids, mexotraxate did not like eirher one. Life has changed dramatically but the Lord is giving me strength. God bless you!
This almost made me cry because it hits home. I'm 19 right now. I've had muscle pain for years, I'm guessing since I was 13 or so. When we went on vacations my leg muscles would ache so bad compared to my siblings and I couldn't wear purses anymore because the pain was too much. Even if the purse was empty the pressure from a single strap purse was far worse than a wide strap I guess because of how the pressure is maximized when something is condensed in a small area. I was always told by my parents that maybe I just slept bad at night, it's because I don't exercise enough or I'm just being lazy doing chores because they also have muscle pain but they're getting work done. I was a very active kid growing up and I was always picked first for dodgeball. After I didn't make the soccer team when I was about 14 or so, I kind of stop playing sports. I started to feel like my muscle pain is probably my fault because I became less active and I started putting on weight, my metabolism just sorta went downhill. But I also didn't exercise because of the pain afterwords, I knew ppl get sore aches after exercising but mine just felt like I was hit by a truck. I thought maybe I'm being dramatic, but no one relates to thinking about if there's a place to sit everytime you go out just because you know your legs and shoulders will tense up at some point. I'm also black and I used to spend like 4 hours on my hair on wash days and it cut down a lot because I also have ADHD (diagnosed this year), depression and anxiety so again I thought this is probably just side effects from it. But I also relate with not being able to open jars, it's so frustrating, even opening a coke can is painful. I'm in college right now and everytime I get back from the cafeteria I'm basically breathless and I turn on the fan IN WINTER! My legs are shaky walking up and down the stairs, but also my bad eating habits play into it too. Sometimes I'm too tired to get food and it's just a cycle. At one point I had INTENSE intense knee pain all of a sudden, my left knee hurt terribly when I stood up or sat down eventually that stopped but now whenever I walk it keeps making a clicking sound (without pain). The thought of washing my hair is overwhelming because of how long I'll have to keep my hands up and stand so I don't do anything, I'm at the point I want to cut it all off. I've researched pain disorders/diseases and some link to diabetes which my blood work was apparently normal? However I believe I might be boarder line only because it runs in my family. I found out about fibromyalgia, but I'm not sure anymore because it's often diagnosed after everything else is ruled out. I read about lupus and celiac too, but I don't have any rashes. Now I've come across Polymyositis and polymyalgia rheumatica. I'm very skeptical about polymyaly rheumatica only because everyone online says it's mostly in ppl 50 and older and very rare under that age, and the pain comes and goes so I don't relate to that. With polymyositis I read the fingers and hands can be very cold a d discolour and that does happen to me but I associated that with my hyperhidrosis (excessive sweat) because sweat cools your body down but now I'm wondering if it's linked to this. I've gotten my thyroid checked and everythings good but my blood iron is low so I take vitamins and iron. My muscles are also very sensitive to touch, which my friends thought was weird that they couldn't give me a light slap on the back. The only thing that makes me skeptical is joint pain because I rarely get that unless it is my knees. I would like to go to a rheumatologist but I'm scared that they'll tell me I'm too young or believe my pain is in my head. I've already got a blood test done before, I don't know exactly if it was a normal one because it was through my general doctor, but nothing seemed out of the ordinary, but I also only went for regular bloodwork so I'm assuming they wouldn't test for polymyositis related things? But I'm so glad that you made this video because it's helped me understand better about polymyositis and hearing that someone else had this pain at 19 really makes me feel like I'm not alone. Thank you so much, I wish you the best.
I’m so glad you found my video and decided to reach out and I really truly hope the video helped you make decisions on what you want to do about finding your diagnosis. sounds to me like you do have polyMyositis everything that you spoke about in your comment I can relate to. I would love for us to connect one day if that’s OK with you. we can exchange phone numbers or I can invite you to a zoom meeting and we can connect that way. just let me know. I am also in the works right now of working with a Myositis Association auto program of support groups for people diagnosed at a young age that’s why I have not been doing videos lately because I’ve been so busy working behind the scenes trying to put into action plans and programs for people diagnosed with Myositis at a young age. so let me know if you would like to meet up and I will set up something for us. Send me your email if you want Zoom.
I can understand your pain. I have been suffering for 12 years without even knowing that i have this disease, i was recently informed that i have it. Hope u feel better sweety
I want to say thank you. I am recently diagnosed and it has been particularly difficult both physically and mentally. Started corticosteroids and immunosuppressive therapy and am hopeful. I am inspired by your shared experience. I really appreciate it!
David Stepney Aww 🥰 Thank you for watching. Never lose hope even in the darkest of times! Whenever you want to talk or share your journey please comment or find me on Facebook under Polymyositis Bringing Awareness. Don’t forget to subscribe ❤️
Sorry of the long post I just feel like I have share. Thanks for telling your story. I feel like you understand how I’ve been feeling. I have been having symptoms for about 3 years now. I actually have a couple of diseases going on but I am more and more convinced that polymyositis is a mayor player in what’s happening to me. My first major clue/symptom was I couldn’t go up the stairs. I worked at a place with lots of stairs and I had to go up and down the stairs constantly all day and then it was like one week I couldn’t go up them anymore. I would be winded and have to rest and like you said I figured I was just tired, I did go out late a lot. But then weeks go on and I was suddenly not interested in going out anymore. I was always too tired and normally I was a party animal. I was NEVER too tired to go out. I would have real bad FOMO if I ever couldn’t do something with friends. But then it became that I just didn’t care anymore, I was just too tired and when I did go out I would be quiet most the time and then leave early because I felt like I needed to lay down. I thought it was stress, I was going through a stressful time. But then what really pushed me to realize something was wrong was when I would have trouble at work. I got a new job and worked at an office but I still constantly felt tired and to the point I couldn’t even sit up at my desk anymore. It was literally too hard to hold my body up for an extended period of time. I would wake up in the morning and my chest an lungs hurt so bad like someone had even sitting on them all night and I would get too exhausted taking a shower and I would have to lay back down in bed again and then I would have to rest again after getting dressed. Anytime I would explain this to people they would all just stare at me like I was making it up or being dramatic. Even my mom who has lupus, I felt wasn’t seeming to get exactly what I meant. I’m now in the testing phase to find out if I’m having muscle degeneration going on. But I feel like listening to stories like yours I feel like it’s pretty obvious. I always describe it to people as, imagine having a weighted blanket wrapped over you all day and then strap some of those weight bands people strap to their arms and legs when they work out to add as much resistance as possible. That is what it feel like in my body every day. I’m just so tired.
Thank you for watching. But most if all thank you for sharing your story. I understand the pain and frustration that comes along with Myositis. Always remember you are not alone! Next year the Myositis Association conference will be in September in Seattle. I want to encourage you to come. There you will find a lot of answers and “family” please subscribe and keep me posted on your journey!!!
I'm not looking forward to my muscle biopsy. I was diagnosed with Hyperthyroidism at 20 then Rheumatoid Arthritis last year before this. I lived alone so luckily my phone was next to me. I was stuck in my bed. So glad your mom was there to support you! ❤❤ I had to relearn also!
Thank you for sharing your story! I'm currently in medical school learning about all these topics. I'm sure hearing your story has helped other with polymyositis and people in general coming across your video become aware of the condition. Your story has helped my understand better than any book has :)
Omg- when I was diagnosed I was at 5,000 and I was in more pain than I’ve been in my life. You are a hell of a strong woman. It seems like you have overcome so much! Congratulations. I would love to hear about pregnancy with this disease - as I’m wanting to have a baby and would love to hear the good, bad, and ugly with that.
I was diagnosed at 14. I’m now 45. I’m not on oxygen yet but it is starting to affect my heart. I use a cane to walk with and sometimes a walker. I have 2 daughters.
Not sure how I missed the comment, but I’m glad I found it! I have only met one other person that has had a child in myositis. Most women get diagnosed after having kids, not before. I. Often felt alone because no one understood what I was going through. I would love to connect. I’m hosting a webinar for the myositis association at the end of the month. Please visit their website at www.myositis.org to register.
Thanks so much for sharing, your diagnoses is identical mines. I was diagnosed with polymyostsis May 2009. At the time I felt near death experience. My heart, lung are affected also. Several strokes, due to the high dosage of medicine cause my blood pressure to elevate without being monitor. I was 29yrs old in 2009, I’m now 41yrs old, but I have good and bad days. It has been a journey but blessed to be alive. Yes people look at me all the time wanting to know what wrong. They say you look to young. Nevertheless it’s not in age. I really appreciate you sharing your journey because its not a easy one. Keep fighting that’s what I tell myself daily.
Thank you for sharing your story with me. I’m glad to hear that you are a fighter and that you don’t give in to the disease. Please keep me updated on your journey.
Thanks for sharing I was diagnosed with polymyositis in January of 2019 after a 3 week stay at the hospital was healthy hard working and out of the blue I was sick was first told I had Rhabdomyolysis (marathon runners fatigue) then after a follow up to my pcp was sent back to ER and was admitted stayed almost 3 weeks. It's hard to explain to ppl your condition I had a co worker say damn you breathing hard you need to lose weight but it wasnt because I was big I've been big all my life but healthy it is due to the PM my lungs are starting to go and I just asked my doctor about being on o2. And I agree it affects more than just the trunk I couldn't hold my head up couldnt walk up stairs couldn't hold more than a plate at a time now I'm very swollen and cant get the fluid off
I’m so sorry for the late response, but comment got lost in the pile 🤦🏽♀️ I hate to hear that you experienced those harsh words from your coworker. But trust me when I say I have been there with strangers, friends and family. The journey ahead of you won’t be easy, but it will be worth it when you overcome this dark hour. After speaking with several people with the disease, I have noticed that the beginning is the hardest physically and emotionally. So, don’t give up and don’t give in. You are not alone! Reach out to me anytime on here, Facebook, or instagram.
I was diagnosed in 2010. The first year of my 30s. I went through a lot. My CPK was over 50,000 or more. I was put in ICU. I was dying. I wanted give up and die. My husband wouldn't let me. I just wanted to waste away because I was so sick and so tired.
moonewitch oh my! I met a woman who’s count was 40,000 and she told me the same thing. She was admitted to ICU and they thought that she was going to die. But she doing so well now. How are you doing currently?
Wow I was in the same boat but never been in ICU or anything. I take a lot of natural stuff that helps fight inflammation and it helps with this disease. Get plenty of rest and move around when you feel good. Keep fighting and you will win. I’m off a lot of my meds but I’m still on prednisone, cellcept, and pain medication because the pain is a monster. I also get a form of chemo that helps with this disease called Rotuxiamab.
Hi! I believe you have immune mediated necrotizing myopathy with anti srp antibody, am I correct? It is a rare and very aggressive form of polymyositis. There is very little about this disease on internet and it is very difficult to understand the prognosis of this disease. You are doing a very important job in sharing your life experience. Thank you
Can you make a video on your interstitial lung disease? What your symptoms were, the test you received, treatment etc. How long you wear oxygen, how you got it, who you see for it.. TIA
Sure! I touched on it a little bit in previous videos, but I didn’t go into detail. Let me check my schedule, because a lot is going on with preparing for school and last vacation. So, I will try and get it posted ASAP. Thank you for the suggestion!!
I was diagnosed in March 2021 with polymyositis finding what was wrong was a exhausting journey itself! It was mistaken for a lot and I was accused of anorexia finally I came across a neurologist that recognized the symptoms transported me from a eating disorder facility to a treating hospital! I'm now doing immunotherapy with immunoglobin ivig treat. && taking azathioprine as my chemo bc methotrexate wasn't a good option for me & weight. And my ck levels decreased within 2 weeks. My carbon d is high in bloodwork so I'm worried I might be leading down a ild? Path? I'm still on methylprednisolone but decreasing dose as I increase azathioprine . Im finding the simpl things really make the biggest difference like rest being as comfortable as possible position wise i am so frail that pressure sores and brusing is a daily effort to prevent. I use a walker but its combined with having severe scoliosis since childhood. I've lost so much muscle my arms are at risk of dislocation from simple transitions liking aiding me from my bed to my commode chair 😔 to getting me up from my shower chair. Its quite a battle I went from getting in and out of my 4yr sons power wheel and running after him with water guns (Aug2019) to unable to get out of bed can barely lift a half cup of water with my right arm my left arm is gone. But I am faithful and optimistic that I will heal recover and react remission maybe have a third child 😇🤭😏.. I would like to bring awareness as well and make videos about my experiences and journey to healing you have inspired me by showing God works and his glory 🙏
I’m not sure how I missed this comment, but thank you for sharing your story with me. I hope that all is well with your health today. Please keep me updated. I’m curious to know if you had another child? Because I will be doing a maternity webinar at the end of this month for The Myositis Association. Please visit their website www.myositis.org to register. If you decided to bring awareness and create videos or anything else please let me know! 💙
I have polymysitis also, my muscle enzyme count was 14,000 and I had a thigh muscle biopsy, I was diagnosed in feb. 2018 an a recurrence in feb 2019, I am now in a rehabilitation hospital but cannot walk or get out of a car or chair. Last year I did learn to walk with a walker but this time Iits worst. I am so depressed an this is such a misunderstood disease with not much treatment or cures I do not have the lung issue but that is scary, I am 71 and have heard this ois caused by autoimmune, depression anxiety, an taking drug Lipator for cholesterol. I hope u will.get stronger an can resume your life as u are very young, God bless.
Frances Stewart I will definitely keep you in my thoughts and prayers. Unfortunately depression comes with this disease. I hope you have a great support system that will listen to you when you need it. Thank you for the kind words. Please keep me posted on your journey.
@@myolife26583 hey , I have polymyositis. I am a 19 year old boy from assam, india. Are you making progress? Are you regaining muscle strength? Can you climb up the stairs? Can you jump?
Nitu Deka Bezpara Yes I have made progress. With medication and physical therapy have regained muscle strength. However, it’s not the same strength I had before I became sick with Polymyositis. It’s the strength that I have gained to do most everyday activities without assistance. Yes I can climb stairs, SLOWLY 😂 And no I can’t jump. 🤦🏽♀️ haven’t done that since I was 18 and I’m 34. I would love to hear more of your story! How did you get diagnosed? What were your symptoms? Keep me posted!!!
Nitu Deka Bezpara methotrexate worked for a short period. But Azathioprine has worked better for me. I also take prednisone and cialis for my heart and Laxis for fluid build up
Anyone here with the disease ever been bitten by hamster? I remember way back I was bitten by one and my whole face swollen and I think that was my trigger.
Thank you for your sharing❣️I was diagnosed polymyositis in September 2020..I am 17 years old😭 please give me some advices and couragement..but now I can walk a little bit..
Most of my work and Myositis community is on Facebook. But I understand what you are going through being so young with this diagnosis. Just remember that this is not a fast recovery. Slow and steady is the best way to heal and get better. Surround yourself with positive people, try to find people with the disease, so you can ask questions and get a good understanding of what you might be going through. I also recommend joining Myositis Support and Understanding on Facebook, and The Myositis Association. I work closely with both organizations. They can provide you with the community, education, and resources you need.
May I ask who your dr is. I live in the same city as you. I met you a previous Myositis conference. You are a lovely person. I have DM. I like my doctor a lot. It’s just good to have more resources. Thank you for bringing more awareness.
Monica Wilson I used to see Dr. Agarwal at Baylor College of Medicine. Now I see Dr. Holly Smith of Houston Methodist. Get in contact with me on Facebook and hopefully when COVID-19 is over we can link up 💙
Myo Life Thank you for the info. I’m not on Facebook or any social media. I would like to get together after COVID if possible. Hope your enjoying the conference this year online. I know it’s not the same but I’m grateful it’s still being offered. Take care and thank you again. God bless you.
Was your C reactive protein high? I believe I may have polymyositis. I have had severe muscle pain in the trapz, neck, back, hips, and gluteus. It’s usually the proximal parts for me. I’ve also had pain near my chest muscles and lower abdomen. It’s been every day for 2 years. My doctor tested me for creatine but I don’t think it is the exact same thing as CPK! I’m curious to know what my CPK is since yours is so high. I feel at a loss with this inflammation. I don’t know what to do. I feel crazy. Also my carbon dioxide levels were high.
Sorry for the late response, but I’m just now seeing this. What other symptoms are you having? Are you falling down? Can you get up from a seated position? Can you go up stairs? Lift your hands above your head? It slides sound like you might be showing signs of PM also if your CO2 level is high then you might also have ILD. I suggest getting a chest X-ray to see if there is any scarring in your lungs. Please keep me updated on your journey!
@@myolife26583 i haven't ever fallen, but I have lost a lot of muscle mass. I was 120 a month ago and now I am 112. Maybe I'm ok because they said my CK level was normal. I feel at a loss with not knowing whats going on. And thank you so much for your response.
@@hannahmichelle1210 it is my understanding that the CK and CPK are two different tests, and that one can be normal and the other can be elevated. But I would ask your rheumatologist just to make sure. Losing muscle mass is an indication, however the only way I know to find out for sure is to do a deep tissue muscle biopsy. Has that been recommended for you?
@@herstoryincolor2021 they haven’t done one yet but they said my CPK was normal so I honestly feel insane about all of this. But I know I’m in pain especially when I push myself too hard. And I always had lots of energy and was strong before this happened
I was diagnosed in nov of 23 my ck level was at 20 thousand as well im struggling hard with day to day activities im in physical therapy and seems to make me weaker. I have a constant coach and i get chocked on food easily. Do you have cognitive issues? Sorry this happened to you so young.
Thank you for sharing your journey with me. Yes I did have issues in the beginning. But it has gotten better over the years. There are time when I have had setbacks but with physical therapy and medication I was able to regain some skills and strength.
so sorry you have to go through this... by any chance were you getting any muscle pain at all? I'm going through something and drs can't figure out what's going on out of nowhere I started getting muscle pain which lead to muscle pain from head to toe... I feel weak I get constant headaches... pain in my muscles 24/7 muscle spasms, and my arms and hands and feet go numb... I'm scared I may have a muscular autoimmune disease the not knowing what exactly is going on sucks
With this disease you do experience pain... I recommend seeing a rheumatologist or a neurologist to get some lab work done. They might recommend a deep tissue muscle biopsy to confirm the labs. But I have seen cases where the biopsy wasn’t needed. Also, you may have one of our “sister” diseases, like Lupus, Fibromyalgia, or Mixed Connective Tissue disease. Unfortunately going to a regular doctor sometime will get you nowhere, because they don’t focus on rare cases. They are trained to treat the general public. Keep me updated on your journey. You can also find me on Facebook under Holly Jones.
@@myolife26583 thank you so much for your reply very much appreciated... I have an appointment next week with the rheumatologist so we'll see what happens... will definitely keep you updated
rev rochelle moore I have a relative that was diagnosed with connective tissue disorder last year. She was thinking she had Myositis, but she was experiencing other symptoms as well that lead to CTD diagnosis.
My Mom has Polymyositis and underlyinf Connect Tissue Disorder. Amongst other thinhs that pop up which they can't officially say are related to PM or not (because they just don't know enough). She was diagnosed when I was 8, I'm almost 22 now. She's progrested, but she's still somewhat ndepdenant and pushing through. I'm sending both of you ladies a lot of strength💖
Mimi Dolci I have lost strength in my hands. Simple things that people take for granted like opening a water bottle or pickle jar is hard for me sometimes. Gripping small things like my pants zipper caused pain abs it doesn’t take much for my wrists to hurt. 🤦🏽♀️
@@myolife26583 im so sorry to hear this has happened my mom has been diagnosed with als but we need a 2nd opinion because she has alll of the symptoms of myositis for the last 6 yrs . when your hands rested flat on a table can you still bring the fingers close together?
Mimi Dolci yes I can. But I know some who can not. Especially the ones diagnosed with IBM. Has she tried hand exercises? Something as simple as playing and squeezing Playdoh, kinetic sand, the sticky little foam balls, and the squeeze stress balls help with hand muscles and movement
@@myolife26583 all of these diseases need more awareness very terrible my mom can squeeze and lift things but she gets carpenters hands and one finger has some swelling on the knuckle. Why did they not document the carpenter's hands and the all over body itching that shouldn't take place with als i read. Im in shock they didnt even do a muscle biopsy. She has been like this from around your age actually we just thought it was allergy 😩 im so sorry i see what the disease really does no exaggeration
Mimi Dolci Are you sure she doesn’t have Dermatomyositis? It comes with the same symptoms. But it targets the skin. I would go see a rheumatologist or neurologist that can do the proper bloodwork. If not a muscle biopsy will confirm.
I have muscle weakness especially in my front thighs if i squats to low or fall it’s extremely hard for me to get up. I found out about my Myositis because i had a miscarriage and they did a blood test and my liver enzymes were high and then my muscles were also high as well now i am finally ready to do a MRI and biopsy because I’m scared
nakeya mcfarland I’m sorry for your loss. I gave birth to a stillborn, so I understand. Don’t be afraid! You will notice that the muscle closes to your trunk or core will be the weakest. The biopsy will confirm the diagnosis. It’s not fun or easy and you will most likely have a scar. Stretching and massages always help me to feel better. Somethings Tylenol and pain pills just won’t get the job done. Thank you for watching my videos. Please keep me updated on your journey ❤️
Myo Life if you don’t mind me asking was having a stillborn due to the disease? because I want to try again but I can’t go through that i barley got through the miscarriage and I’m sorry you had to go through that ❤️
I am currently on Prednisone, Azathioprine, and Lasix. There are other medications that I was prescribed over the years like Methotrexate. But it really is a trial and error type of disease. You are going to have to find the right medications for your body. Also, water therapy, physical therapy, stretching, saunas, and massages help with pain. If you don’t want to take pain meds all the time. And I know this sounds crazy but the warmer the weather... the better I feel. Winter sucks! Lol! If you have anymore questions let me know. If I don’t have the answer I will definitely try to help find one!!!
@@krazynchristian9322 thank you so much. This have really been a process for me and my family. It feel like it hit me over night. I am on 60mg of Prednisone, 150mg Azathioprine, 50mg Levothyroxine and Silver antibiotics. So far I have taken two infusion call Rituxan-Rituximab. I can really say it has helped me. I am steady loosing weight, is that normal...? I have went from 333 to 254, it's like I am loosing 5lbs a week... It feel like I have no abdomen muscle.
Lameshiale Brown I’m sorry I didn’t see this message. But yes in the beginning you lose weight. Then you gain lots of fat and water weight from the prednisone especially if you aren’t active. But as they taper down the prednisone you well lose weight again. I went from 150-230-200-286-225 currently. It’s definitely a rollercoaster. 😂
@@myolife26583 thank you, I feel so good right now, I am able to walk 🙌 without my walker. I can't believe I went from a wheelchair to a walker to back walking on my own. If I can just get this breathing under control, everything will good.
Lameshiale Brown That’s great!!! I am so happy for you. And don’t worry about the breathing. The key thing to do is never panic. It makes your breathing worse. Just take you dome and focus on your breaths. Also, check and see if your doctor can prescribe Pulmonary Rehab along with your physical therapy. They are certain breathing utensils that can help exercise and improve your lung function or at least keep it steady. Thank you for the update!!! Keep me posted
I'm also suffering from myositis.I want to know what would my condition after 10 years when currently I am totally unable to climb stairs.Do all those having myositis experience extreme hairfall.
Everyone is different of course, and you have to factor in that this disease is unpredictable. With that being said, everyone I know that is 10yrs plus is thriving!!! I’m now sure if it’s the medication, a positive mindset, exercise, nutrition or a good support system. I personally think it’s a combination of those things that fit their lifestyle and the lifestyle they want to maintain or improve. I always say that slow and steady wins the race in this disease. If possible, sign up for any form of physical therapy. In the beginning I loved water therapy!!! The stairs will happen again and in 10yrs my prayer is that you will be thriving as well! Just stay on top of your treatment plan and be consistent in your exercise (your level), and continue to do things that bring you joy! Hope this helps! Keep me updated on your journey! Check out Myositis Support and Understanding and The Myositis Association. I partner with both organizations 💙
@@myolife26583 thankyou so much for bringing a light of hope.From where I can get guidance regarding nutrition, exercise, therapy and treatment that can make my life better
Most people reach out to me on here and Facebook. If you are looking for support. Join The Myositis Association. I am on the Board of Directors and we have support groups that you can join and webinars you can attend for more information. Visit www.myositis.org
@@myolife26583 Hey dea okaye yes I did sign up on that website that's how I found you don't have a Facebook I really need to get one but yes I am looking for young women black women like me I'm 29 saw signs at 19 got diagnosed at 21 I haven't seen a doctor in about five years and I know that's bad but I'm just now learning to accept who I am now still battle with it last night I watched most of all your videos and when I saw I was a big baby because I learned things that I had no idea about that I had to ask my fiance if he really ready to be with me I thank you for your story because I really felt as if I was the only one because of what the doctor told me at 21 that's this is rare one in a million so I thought is was only me
Shamaila Amar There is ALWAYS HOPE, FAITH, and MIRACLES happening everyday. You can’t let this disease attack your body and your mindset or spirit! How old are you? What has your journey been like? Let me know
Mazzy Bibi UK Yes I do! I have 3 pages you can find me on. 1) Polymyositis: Bringing Awareness, 2) Krazy N Christian, 3) Holly Jones. I speak on Myositis on each of these pages as well a hot topics and everyday life. You can reach out to me at anytime!
Myo Life I have polymyositis as well and it is very challenging and my numbers was over 50,000 and now I’m finally back down to about 150 and that’s with treatment of chemo. I’ve been blessed not to be on oxygen. Was in a wheel chair and had to relearn how to walk, talk, and everything you said. But I’m fighting and I encourage you to do the same
I am currently waiting to see a muscle specialist. I feel I may have developed Polymyositis from taking the SSRI called Luvox. Before I started taking Luvox I was a fit, lean and healthy 34 year old man who suffered from workplace anxety. Within a very short time of being on this drug, all the muscles in body broke down and turned to fat. It was really very dramatic. Things have improved over the months from doing a lot of exercise and good nutrition, but my muscles are stil quite pudgy and undefined. I haven't really noticed any real physical weakness though. Does this sound like it still could be Polymyositis ? Can drugs like anti depressants sometimes trigger Polymyositis ? Please someone let me know. Thank you.
I’m not sure if drugs can trigger Polymyositis. But I have heard of trauma or things like childbirth triggering Myositis. I’m glad to hear that you are still active and have a healthy diet. Keep it up! Keep me updated on what you find out from the muscle specialist. Have you considered seeing a Neurologist?
@@myolife26583 Thanks for the reply. Yes, I'm waiting to see a neuromuscular neurologist. Do you know if everyone who gets this condition has difficulty performing tasks which involve strength? Or do some people just have a mild form of the condition and not have any noticable strengh related issues?
Asiya's kitchen Good morning ☀️ It depends on what your doctor recommends. I’m pretty sure that the standard bloodwork that checks your over all health will be done. The bloodwork for your CK/CPK will done. This will show the level of inflammation in your body to let you know if you need increase, decrease, or stay on the same dosage of medication. You will do a small strength test. And if you have ILD, you will have a Pulmonary Function Test and 6min walk test. But if nothing else... you can definitely expect to do some bloodwork 😩 Also, if you are just getting started you need to create your team of doctors. Preferably all under the same network, it will make it easier for them to communicate in their computer system. This will be something you NEED! You need a PCP that can monitor and keep all of your overall health information and notes from your other doctors. You will need a Rheumatologist, Pulmonologist, Cardiologists, and if possible a Physical Therapist and Nutritionist. But most importantly a therapist or some sort of counselor. You need someone you can talk to outside of family and friends. Because depression is real in Myositis. I hope this helps! Please keep me updated on your journey. Please subscribe to my channel. I can also be found on Facebook under Polymyositis Bringing Awareness!
@@myolife26583 actually my doctor from India she wrote some analysia test after six month I went today hospital but on lab they didn't understand what's wriiten so I said Ana 😅I m scared now I did wrong test
Asiya's kitchen oh no 🤦🏽♀️ I hope you got the correct test done. Most of the time the lab will verify before taking the bloodwork. Because they don’t like re-sticking people and they don’t like wasting supplies.
Hi dear nice to. Meet u u know today only I prayed that I want some that have same problem so I can understand more and I am so scared about what will happen next because now some times I feel vibration in my body I diagnosed in December I can feel u dear insha Allah. I will pray for every one🤲plz share ur insta I'd
Over the years my diet as pretty much remained the same. But I have tried eating healthier and exercising. Then there have been times when I was on “vacation” from dieting 😂 Don’t be afraid of the disease. Yes, there will be questions unanswered, but over time answers will come from experience, trial and error. You just can’t ever give up. Make sure you have a good support system and a doctor you feel comfortable with and that you feel will fight for you. Please keep me updated on your journey. ❤️
@@myolife26583 sure 😁that's really good to hear vacation is important 💜yes some times when on flares feel like that to give up but here every one story inspired me how difficult situation every one is managing 😊💜thank u
I collapsed and my sister found me passed out unconscious. Woke up in hospital after being unconscious for 2 days. I knew I was very sick. Diagnosed with SLE (Lupus) over 20 years ago. Then diagnosed with Central Sleep Apnea (CNS means unknown cause) had supplemental oxygen. Then went through bad divorce…. The myositis was recently added and my Rheumatologist is trying to tease out the why’s of my CK levels (being in the Thousands) when I was hospitalized. Thank you for sharing and being your beautiful self! This type video is very helpful. You do look beautiful, so I understand the whole, “you must not be sick because you don’t look sick”, thing! I too looked fine, so how could I be so weak, in pain…. I am somewhat better now but on my path of discovering just how difficult full and accurate diagnosis is. It takes time, and full disclosure with your doctors! The small details matter too! Add the weight of Covid on the medical community and it’s especially difficult. Bless all seeking answers to being able to live their best life! 🥰
Thank you so much for sharing your story. I’m 26 years old and I was diagnosed last November 2019. I am still in need of assistance and often times feel the need to give up, but hearing your story and how after everything you’ve been through you now have a family and are persevering has inspired me to push through. God Bless you!
Mia Togle Aww 🥰 Thank you sooo much!!! Don’t ever give up! You are not alone. Please feel free to come on here anytime to vent 😠 or celebrate 🎉 and keep me updated on your journey. Checkout Myositis Support and Understanding on Facebook and The Myositis Association. I work closely with both organizations 💙 My Facebook page is Polymyositis Bringing Awareness look me up!
Hi, I was diagnosed with dermatomyositis on July 8th of 2020, I’m a 43 year old mom of 5.
My symptoms started just like yours, but years ago. In my late 30s I was diagnosed with RA. When I went in the hospital my ck was 19000. I spent 2 months in the hospital/ rehab. I had trouble swallowing, taking a deep breath. I couldn’t walk , feed myself without severe difficulty. I couldn’t do anything!
This has truly been a learning experience, and I’m still learning. My current status is , I currently have a hospital bed at home, I have to sit in a lift chair because I can’t get up from low places, I have a walker and wheelchair ramp.
Only because of God am I still here.
I smile all the time and I’m extremely grateful.
I know I’ll get better, I went from being a home baker, to not even being able to cook.
Thank you for your story. I’m still trying to learn as much as I can.
I am so sorry to hear about your diagnosis. However I can already see the beautiful testimony that is about to evolve in your life. So, thank you for being bold enough to tell your story. Please keep me updated on your journey! The Myositis Association will be having a Women of Color webinar on this Thursday! I would love for you to register and attend. I will be speaking. The information is located on my personal page under Holly Jones, The Myositis Association Facebook page, and the Myositis Women of Color Facebook Page. I am also the creator of the HERstory In Color Facebook page and Private support group if you would like to join. HERstory In Color also has a UA-cam channel. Another great place for support is the from Myositis Support and Understanding. Look them up on Facebook. I will continue to keep you in my thought and prayers. Keep the positive spirit, the beginning is a process, but it gets better. Please come to the webinar!
My wife "45" this past week just received an initial diagnosis after having CPk on Tuesday and EMG/Nerve Conduction Thursday. Started 60mg Prednisone Friday. She will have a Muscle Biopsy in the coming days.
Going back 10 years we see now precursors she had/has that were warnings but no physician ever showed concern. 18-20 months ago she started a new job which was more physical than any other she had ever had. Almost immediately she started complaining about soreness and pain, mostly in feet and hands but managed through it thinking it was normal from using new muscles and being on her feet.
May 21, 2019 she was diagnosed with Osteoporosis, within 3 weeks she developed extreme pain head to toe with reduced flexibility and weakness. Physicians ran blood test and treated as if it was Fibromyalgia and Arthritis. Several medications which provided no relief but she continued to work and was bed ridden on off days.
It has taken since then to now to see a Rheumotologist which almost immediately knew what the problem is.
Sorry this is so long but i my concerns are the length of time this has gone on without treatment and the severity of pain she has. I know my wife, she isnt a wimp and seeing her cry from pain and not move is killing me. I feel hopeless as if there is nothing i can do for her.
If anyone has advice, similar stories, anything in support I would be grateful in your response. I pray and hope for you all. Thanks
Daniel Marty I am a member of two organizations: The Myositis Association and Myositis Support and Understanding. These two organizations can help you with resources and education. Every year in September The Myositis Association has a conference that is very informative and gives patients and their caregivers a feeling of “family” as well as different educational sessions to attend. Next year it will be in Seattle, Washington. Please inbox me on my Facebook page under Polymyositis: Bringing Awareness so I can give you more details. My husband and I are the support group leaders for Myositis in the Houston and southeast are of Texas. If you live in the area or plan to visit please contact me. Your wife is taking the proper route to her diagnosis and treatment. And with you making this post, I’m sure you are doing a great job. My husband has been in your position for the last 14yrs. You are not alone nor are you helpless! Please keep me updated on your journey together!!!
I have alleviated CPK but the EMG test comes back negative. No one knows not even my Rheumatologist. Being so stiff causes you to just want to sleep all day but many thought you are just lazy. Sometimes leading to depression since you are indoor and receive very little sunlight. I am now also having multiple issues such as Sleep Apnea, Pneumonia, dry cough, pre-diabetic, unexplained abscess, and lymph nodes, Acanthosis nigricans. For years I thought I have Lyme disease. None of this symptom has a cure. I tried to exercise but it was just a losing battle against inflammation. Eating healthy help. Avoid processed food, try to avoid none Kosher. Good luck!
@@myolife26583
Update. My amazing wife has yet to miss a day of work and has managed to continue the odd jobs she has done for others for years. She is so strong mentally that i honestly think she could climb mountains.
With that said I am the only one who sees her at home when the exhaustion, pain and depression are released.
Currently the Rheumatologist is dropping the dose of Prednisone and has introduced Methotrexate in an attempt to get off the steroids.
New symptoms in her hands where the skin is cracking and splitting open. This may be Derma symptoms but will need to follow up on the next visit to our Rheumatologist.
Last blood CPK level had dropped below 500 which is encouraging and the main complaint at this time is having no strength and very limited flexibility.
I want to say again to you and all going through this life that you are amazing people. It seems everyones symptoms are just a little different from eachother and you all as individuals are fighting your battles in a way that works for you.
I hope and pray for you all.
Now. My frustration with information online. It is a joke. The general explanations and symptoms do not do justice for what people go through with this disease. Medical sites need to do a better job. Start by saying this is a TERRIBLE thing. Dont sugar coat it and use soreness or other politically correct words in the description.
Sorry. Had to rant. Love you all.
Daniel Marty Thank you for The update. There is no such thing as ranting on my channel. I want everyone to know that this is a place where you can come and tell your story or speak about what you’re currently going through, and maybe we can all come together and find a solution. I personally don’t care for Methotrexate. It didn’t work for me or some other people that I have spoken with. Imuran also known as Azathioprine works for me. 500 is a great number!!! I wouldn’t start tapering off Prednisone until after being in “remission” for at least 6 months. Because I would hate for her to taper or stop. Just to be increased again. However, I am not a doctor 👀 😂. Does your wife qualify for physical therapy? And you are absolutely correct on how the disease is defined online and in books. It is horrible!!! Hopefully one day there will be a cure.
Sir I have also same problem but after treatment of 8 months now I am ok and better now .june 2019 I badly suffered from muscle pain fever lungs problems cannot walk or up on the 🪑 and other lots of problems my doctor prefers me to predinisolan 60 mg,vitamin d3 60000 lU every week , potacium and 500 mg calcium every day.my doctor decrease predosolan 10 mg after every two months .now I am well do all types of activity easily but hard work is aviod by me.now predenisolan is left but other medicine is continue. I live a normal life with my family.
I actually just looked this up to hear peoples experiences with polymyositis. I honestly did not know it could get that bad. I hope you completely heal and recover from this condition.
Shawn Sanders Thank you for your kind words.
Sadly, there is no known cure for Polymyositis, as of currently. There is some people who can live without any treatment or medications, but more commonly you are on some form of medical treatment/s for your life.
Thank you my dear sista for sharing. I can relate to everything you have spoken in regards to this disease. I also was diagnosed in April 2016 with myositis with a cpk count at 31,000 which landed me in the hospital. I was so weak not able to take a top off a bottle water. You have really encouraged me to tell my story on youtube and with many others with the hope of we can still live and enjoy life. I pray that God continues to give you strength from day to day.
R W aww thank you so much for your kind words and encouragement. Please keep me posted on your journey and subscribe to my channel. I’ve been absent for a while but I’m going to start back vlogging soon!
I was diagnosed in 2012 after coming down with Guilliam Barre. It was the most difficult time of my life. My doctor put me on steroids, mexotraxate did not like eirher one. Life has changed dramatically but the Lord is giving me strength. God bless you!
Thank you for watching the video. I’m glad to hear that you have a strong faith to lean on when life gets tough. Keep me updated on your journey! 💙
Wow at 86 I thought I was unlucky to have it .wish you all the best .take care
This almost made me cry because it hits home. I'm 19 right now. I've had muscle pain for years, I'm guessing since I was 13 or so. When we went on vacations my leg muscles would ache so bad compared to my siblings and I couldn't wear purses anymore because the pain was too much. Even if the purse was empty the pressure from a single strap purse was far worse than a wide strap I guess because of how the pressure is maximized when something is condensed in a small area. I was always told by my parents that maybe I just slept bad at night, it's because I don't exercise enough or I'm just being lazy doing chores because they also have muscle pain but they're getting work done. I was a very active kid growing up and I was always picked first for dodgeball. After I didn't make the soccer team when I was about 14 or so, I kind of stop playing sports. I started to feel like my muscle pain is probably my fault because I became less active and I started putting on weight, my metabolism just sorta went downhill. But I also didn't exercise because of the pain afterwords, I knew ppl get sore aches after exercising but mine just felt like I was hit by a truck. I thought maybe I'm being dramatic, but no one relates to thinking about if there's a place to sit everytime you go out just because you know your legs and shoulders will tense up at some point. I'm also black and I used to spend like 4 hours on my hair on wash days and it cut down a lot because I also have ADHD (diagnosed this year), depression and anxiety so again I thought this is probably just side effects from it. But I also relate with not being able to open jars, it's so frustrating, even opening a coke can is painful. I'm in college right now and everytime I get back from the cafeteria I'm basically breathless and I turn on the fan IN WINTER! My legs are shaky walking up and down the stairs, but also my bad eating habits play into it too. Sometimes I'm too tired to get food and it's just a cycle. At one point I had INTENSE intense knee pain all of a sudden, my left knee hurt terribly when I stood up or sat down eventually that stopped but now whenever I walk it keeps making a clicking sound (without pain). The thought of washing my hair is overwhelming because of how long I'll have to keep my hands up and stand so I don't do anything, I'm at the point I want to cut it all off. I've researched pain disorders/diseases and some link to diabetes which my blood work was apparently normal? However I believe I might be boarder line only because it runs in my family. I found out about fibromyalgia, but I'm not sure anymore because it's often diagnosed after everything else is ruled out. I read about lupus and celiac too, but I don't have any rashes. Now I've come across Polymyositis and polymyalgia rheumatica. I'm very skeptical about polymyaly rheumatica only because everyone online says it's mostly in ppl 50 and older and very rare under that age, and the pain comes and goes so I don't relate to that. With polymyositis I read the fingers and hands can be very cold a d discolour and that does happen to me but I associated that with my hyperhidrosis (excessive sweat) because sweat cools your body down but now I'm wondering if it's linked to this. I've gotten my thyroid checked and everythings good but my blood iron is low so I take vitamins and iron. My muscles are also very sensitive to touch, which my friends thought was weird that they couldn't give me a light slap on the back. The only thing that makes me skeptical is joint pain because I rarely get that unless it is my knees. I would like to go to a rheumatologist but I'm scared that they'll tell me I'm too young or believe my pain is in my head. I've already got a blood test done before, I don't know exactly if it was a normal one because it was through my general doctor, but nothing seemed out of the ordinary, but I also only went for regular bloodwork so I'm assuming they wouldn't test for polymyositis related things? But I'm so glad that you made this video because it's helped me understand better about polymyositis and hearing that someone else had this pain at 19 really makes me feel like I'm not alone. Thank you so much, I wish you the best.
I’m so glad you found my video and decided to reach out and I really truly hope the video helped you make decisions on what you want to do about finding your diagnosis. sounds to me like you do have polyMyositis everything that you spoke about in your comment I can relate to. I would love for us to connect one day if that’s OK with you. we can exchange phone numbers or I can invite you to a zoom meeting and we can connect that way. just let me know. I am also in the works right now of working with a Myositis Association auto program of support groups for people diagnosed at a young age that’s why I have not been doing videos lately because I’ve been so busy working behind the scenes trying to put into action plans and programs for people diagnosed with Myositis at a young age. so let me know if you would like to meet up and I will set up something for us. Send me your email if you want Zoom.
I can understand your pain. I have been suffering for 12 years without even knowing that i have this disease, i was recently informed that i have it. Hope u feel better sweety
You are telling the whole entire truth! My story 16 yrs ago! Dx in 2015 and living my best life at 55! God Bless you baby girl!
Aww thank you ☺️ Happy to hear that you are in a good place with having Myositis! 🙌🏽
Brave and strong woman. God be with you.
You are such a beautiful young lady. And obviously a very strong young lady. I will put you in my prayers
God bless you.
Thank you so much ❤️
I want to say thank you. I am recently diagnosed and it has been particularly difficult both physically and mentally. Started corticosteroids and immunosuppressive therapy and am hopeful. I am inspired by your shared experience. I really appreciate it!
David Stepney Aww 🥰 Thank you for watching. Never lose hope even in the darkest of times! Whenever you want to talk or share your journey please comment or find me on Facebook under Polymyositis Bringing Awareness. Don’t forget to subscribe ❤️
Thank you so much for the video. I was diagnosed with Polymyositis in Jan. I can relate so much to your story. God Bless and stay strong
Jamel Wasare May God bless you on your journey. Please keep me updated or ask any questions you need!
@@myolife26583 Thank you and I sure will. I highly appreciate the reply. It made my morning
@Mike Law how are you doing so far dealing with it
Sounds like my story. Thank you for sharing!
Hi. I enjoyed your story. I too was diagnosed in July 2021. I am really scared. I am on oxygen 24/7.
Sorry of the long post I just feel like I have share.
Thanks for telling your story. I feel like you understand how I’ve been feeling. I have been having symptoms for about 3 years now. I actually have a couple of diseases going on but I am more and more convinced that polymyositis is a mayor player in what’s happening to me. My first major clue/symptom was I couldn’t go up the stairs. I worked at a place with lots of stairs and I had to go up and down the stairs constantly all day and then it was like one week I couldn’t go up them anymore. I would be winded and have to rest and like you said I figured I was just tired, I did go out late a lot.
But then weeks go on and I was suddenly not interested in going out anymore. I was always too tired and normally I was a party animal. I was NEVER too tired to go out. I would have real bad FOMO if I ever couldn’t do something with friends. But then it became that I just didn’t care anymore, I was just too tired and when I did go out I would be quiet most the time and then leave early because I felt like I needed to lay down. I thought it was stress, I was going through a stressful time.
But then what really pushed me to realize something was wrong was when I would have trouble at work. I got a new job and worked at an office but I still constantly felt tired and to the point I couldn’t even sit up at my desk anymore. It was literally too hard to hold my body up for an extended period of time.
I would wake up in the morning and my chest an lungs hurt so bad like someone had even sitting on them all night and I would get too exhausted taking a shower and I would have to lay back down in bed again and then I would have to rest again after getting dressed. Anytime I would explain this to people they would all just stare at me like I was making it up or being dramatic. Even my mom who has lupus, I felt wasn’t seeming to get exactly what I meant.
I’m now in the testing phase to find out if I’m having muscle degeneration going on. But I feel like listening to stories like yours I feel like it’s pretty obvious. I always describe it to people as, imagine having a weighted blanket wrapped over you all day and then strap some of those weight bands people strap to their arms and legs when they work out to add as much resistance as possible. That is what it feel like in my body every day. I’m just so tired.
Thank you for watching. But most if all thank you for sharing your story. I understand the pain and frustration that comes along with Myositis. Always remember you are not alone! Next year the Myositis Association conference will be in September in Seattle. I want to encourage you to come. There you will find a lot of answers and “family” please subscribe and keep me posted on your journey!!!
I'm not looking forward to my muscle biopsy. I was diagnosed with Hyperthyroidism at 20 then Rheumatoid Arthritis last year before this. I lived alone so luckily my phone was next to me. I was stuck in my bed. So glad your mom was there to support you! ❤❤ I had to relearn also!
Erica Carter I was put to sleep for the biopsy. They did it on my left thigh. I will keep you in my prayers. Keep me posted on your journey. ❤️
@@myolife26583 I will definitely do so! I'm 37.
@@myolife26583 I will be put to sleep with mine. 💜 How was walking after the biopsy? They are taking from my left thigh, as well!
Keep up the good works and awareness! You inspired me! You are right they need to redo the inflammation because it really affects the whole body.
Phissith Ottha-Hekenon Aww thank you for watching. 🥰
Thank you for sharing your story! I'm currently in medical school learning about all these topics. I'm sure hearing your story has helped other with polymyositis and people in general coming across your video become aware of the condition. Your story has helped my understand better than any book has :)
Aww 🥰 thank you! If you ever have any questions or would like to sit in one of my group meetings to learn more or ask questions just let me know.
Omg- when I was diagnosed I was at 5,000 and I was in more pain than I’ve been in my life. You are a hell of a strong woman. It seems like you have overcome so much! Congratulations. I would love to hear about pregnancy with this disease - as I’m wanting to have a baby and would love to hear the good, bad, and ugly with that.
I guess I need to do a video on pregnancy with polymyositis. But any questions you have I will answer!
I was diagnosed at 14. I’m now 45. I’m not on oxygen yet but it is starting to affect my heart. I use a cane to walk with and sometimes a walker. I have 2 daughters.
Not sure how I missed the comment, but I’m glad I found it! I have only met one other person that has had a child in myositis. Most women get diagnosed after having kids, not before. I. Often felt alone because no one understood what I was going through. I would love to connect. I’m hosting a webinar for the myositis association at the end of the month. Please visit their website at www.myositis.org to register.
Thanks so much for sharing, your diagnoses is identical mines. I was diagnosed with polymyostsis May 2009. At the time I felt near death experience. My heart, lung are affected also. Several strokes, due to the high dosage of medicine cause my blood pressure to elevate without being monitor. I was 29yrs old in 2009, I’m now 41yrs old, but I have good and bad days. It has been a journey but blessed to be alive. Yes people look at me all the time wanting to know what wrong. They say you look to young. Nevertheless it’s not in age. I really appreciate you sharing your journey because its not a easy one. Keep fighting that’s what I tell myself daily.
Thank you for sharing your story with me. I’m glad to hear that you are a fighter and that you don’t give in to the disease. Please keep me updated on your journey.
I sure will
Thank you for sharing I can sooo relate to to your story it hit me 2003 and I still have polymiositis
How old were you? How is your journey going? Keep me updated!
@@myolife26583i believe i was 19 20 maybe ahhh its been a long time thanks for replying back i have never known someone else w my condition
veronica deleon I was 19 as well. There is a whole community of us. Let me know if you are interested in joining.
Thanks for sharing I was diagnosed with polymyositis in January of 2019 after a 3 week stay at the hospital was healthy hard working and out of the blue I was sick was first told I had Rhabdomyolysis (marathon runners fatigue) then after a follow up to my pcp was sent back to ER and was admitted stayed almost 3 weeks. It's hard to explain to ppl your condition I had a co worker say damn you breathing hard you need to lose weight but it wasnt because I was big I've been big all my life but healthy it is due to the PM my lungs are starting to go and I just asked my doctor about being on o2. And I agree it affects more than just the trunk I couldn't hold my head up couldnt walk up stairs couldn't hold more than a plate at a time now I'm very swollen and cant get the fluid off
I’m so sorry for the late response, but comment got lost in the pile 🤦🏽♀️ I hate to hear that you experienced those harsh words from your coworker. But trust me when I say I have been there with strangers, friends and family. The journey ahead of you won’t be easy, but it will be worth it when you overcome this dark hour. After speaking with several people with the disease, I have noticed that the beginning is the hardest physically and emotionally. So, don’t give up and don’t give in. You are not alone! Reach out to me anytime on here, Facebook, or instagram.
I was diagnosed in 2010. The first year of my 30s. I went through a lot. My CPK was over 50,000 or more. I was put in ICU. I was dying. I wanted give up and die. My husband wouldn't let me. I just wanted to waste away because I was so sick and so tired.
moonewitch oh my! I met a woman who’s count was 40,000 and she told me the same thing. She was admitted to ICU and they thought that she was going to die. But she doing so well now. How are you doing currently?
Wow I was in the same boat but never been in ICU or anything. I take a lot of natural stuff that helps fight inflammation and it helps with this disease. Get plenty of rest and move around when you feel good. Keep fighting and you will win. I’m off a lot of my meds but I’m still on prednisone, cellcept, and pain medication because the pain is a monster. I also get a form of chemo that helps with this disease called Rotuxiamab.
Hi!
I believe you have immune mediated necrotizing myopathy with anti srp antibody, am I correct? It is a rare and very aggressive form of polymyositis. There is very little about this disease on internet and it is very difficult to understand the prognosis of this disease. You are doing a very important job in sharing your life experience. Thank you
Thank you so much for your story. Loved it. Thank you ❤️
Thank you for watching 💙
Can you make a video on your interstitial lung disease? What your symptoms were, the test you received, treatment etc. How long you wear oxygen, how you got it, who you see for it.. TIA
Sure! I touched on it a little bit in previous videos, but I didn’t go into detail. Let me check my schedule, because a lot is going on with preparing for school and last vacation. So, I will try and get it posted ASAP. Thank you for the suggestion!!
I was 21,000, you lose! Stay strong, stay beautiful! God Bless!
ghitany 😂 if that’s losing I’ll take it. 😆 🤦🏽♀️ You stay strong as well. Keep me updated on your journey!!!
I was diagnosed in March 2021 with polymyositis finding what was wrong was a exhausting journey itself! It was mistaken for a lot and I was accused of anorexia finally I came across a neurologist that recognized the symptoms transported me from a eating disorder facility to a treating hospital! I'm now doing immunotherapy with immunoglobin ivig treat. && taking azathioprine as my chemo bc methotrexate wasn't a good option for me & weight. And my ck levels decreased within 2 weeks. My carbon d is high in bloodwork so I'm worried I might be leading down a ild? Path? I'm still on methylprednisolone but decreasing dose as I increase azathioprine . Im finding the simpl things really make the biggest difference like rest being as comfortable as possible position wise i am so frail that pressure sores and brusing is a daily effort to prevent. I use a walker but its combined with having severe scoliosis since childhood. I've lost so much muscle my arms are at risk of dislocation from simple transitions liking aiding me from my bed to my commode chair 😔 to getting me up from my shower chair. Its quite a battle I went from getting in and out of my 4yr sons power wheel and running after him with water guns (Aug2019) to unable to get out of bed can barely lift a half cup of water with my right arm my left arm is gone. But I am faithful and optimistic that I will heal recover and react remission maybe have a third child 😇🤭😏.. I would like to bring awareness as well and make videos about my experiences and journey to healing you have inspired me by showing God works and his glory 🙏
I’m not sure how I missed this comment, but thank you for sharing your story with me. I hope that all is well with your health today. Please keep me updated. I’m curious to know if you had another child? Because I will be doing a maternity webinar at the end of this month for The Myositis Association. Please visit their website www.myositis.org to register. If you decided to bring awareness and create videos or anything else please let me know! 💙
I have polymysitis also, my muscle enzyme count was 14,000 and I had a thigh muscle biopsy, I was diagnosed in feb. 2018 an a recurrence in feb 2019, I am now in a rehabilitation hospital but cannot walk or get out of a car or chair. Last year I did learn to walk with a walker but this time Iits worst. I am so depressed an this is such a misunderstood disease with not much treatment or cures I do not have the lung issue but that is scary, I am 71 and have heard this ois caused by autoimmune, depression anxiety, an taking drug Lipator for cholesterol. I hope u will.get stronger an can resume your life as u are very young, God bless.
Frances Stewart I will definitely keep you in my thoughts and prayers. Unfortunately depression comes with this disease. I hope you have a great support system that will listen to you when you need it. Thank you for the kind words. Please keep me posted on your journey.
@@myolife26583 hey , I have polymyositis. I am a 19 year old boy from assam, india. Are you making progress? Are you regaining muscle strength? Can you climb up the stairs? Can you jump?
Nitu Deka Bezpara Yes I have made progress. With medication and physical therapy have regained muscle strength. However, it’s not the same strength I had before I became sick with Polymyositis. It’s the strength that I have gained to do most everyday activities without assistance. Yes I can climb stairs, SLOWLY 😂 And no I can’t jump. 🤦🏽♀️ haven’t done that since I was 18 and I’m 34. I would love to hear more of your story! How did you get diagnosed? What were your symptoms? Keep me posted!!!
@@myolife26583 i am 19 year old boy from assam, india. I was diagnosed at 16 in 2016. What medicines worked for you?
Nitu Deka Bezpara methotrexate worked for a short period. But Azathioprine has worked better for me. I also take prednisone and cialis for my heart and Laxis for fluid build up
Anyone here with the disease ever been bitten by hamster? I remember way back I was bitten by one and my whole face swollen and I think that was my trigger.
I’m sorry, but no I haven’t.
Thank you for your sharing❣️I was diagnosed polymyositis in September 2020..I am 17 years old😭 please give me some advices and couragement..but now I can walk a little bit..
You will get through this, I was diagnosed in 2016. Got ups and down. Be surrounded by positive people
Most of my work and Myositis community is on Facebook. But I understand what you are going through being so young with this diagnosis. Just remember that this is not a fast recovery. Slow and steady is the best way to heal and get better. Surround yourself with positive people, try to find people with the disease, so you can ask questions and get a good understanding of what you might be going through. I also recommend joining Myositis Support and Understanding on Facebook, and The Myositis Association. I work closely with both organizations. They can provide you with the community, education, and resources you need.
@@myolife26583 thanks 😄
@@memorymoyo2427 thanks 😄
May I ask who your dr is. I live in the same city as you. I met you a previous Myositis conference. You are a lovely person. I have DM. I like my doctor a lot. It’s just good to have more resources. Thank you for bringing more awareness.
Monica Wilson I used to see Dr. Agarwal at Baylor College of Medicine. Now I see Dr. Holly Smith of Houston Methodist. Get in contact with me on Facebook and hopefully when COVID-19 is over we can link up 💙
Myo Life Thank you for the info. I’m not on Facebook or any social media. I would like to get together after COVID if possible. Hope your enjoying the conference this year online. I know it’s not the same but I’m grateful it’s still being offered. Take care and thank you again. God bless you.
Was your C reactive protein high? I believe I may have polymyositis. I have had severe muscle pain in the trapz, neck, back, hips, and gluteus. It’s usually the proximal parts for me. I’ve also had pain near my chest muscles and lower abdomen. It’s been every day for 2 years. My doctor tested me for creatine but I don’t think it is the exact same thing as CPK! I’m curious to know what my CPK is since yours is so high. I feel at a loss with this inflammation. I don’t know what to do. I feel crazy. Also my carbon dioxide levels were high.
Sorry for the late response, but I’m just now seeing this. What other symptoms are you having? Are you falling down? Can you get up from a seated position? Can you go up stairs? Lift your hands above your head? It slides sound like you might be showing signs of PM also if your CO2 level is high then you might also have ILD. I suggest getting a chest X-ray to see if there is any scarring in your lungs. Please keep me updated on your journey!
@@myolife26583 i haven't ever fallen, but I have lost a lot of muscle mass. I was 120 a month ago and now I am 112. Maybe I'm ok because they said my CK level was normal. I feel at a loss with not knowing whats going on. And thank you so much for your response.
@@hannahmichelle1210 it is my understanding that the CK and CPK are two different tests, and that one can be normal and the other can be elevated. But I would ask your rheumatologist just to make sure. Losing muscle mass is an indication, however the only way I know to find out for sure is to do a deep tissue muscle biopsy. Has that been recommended for you?
@@herstoryincolor2021 they haven’t done one yet but they said my CPK was normal so I honestly feel insane about all of this. But I know I’m in pain especially when I push myself too hard. And I always had lots of energy and was strong before this happened
I was diagnosed in nov of 23 my ck level was at 20 thousand as well im struggling hard with day to day activities im in physical therapy and seems to make me weaker. I have a constant coach and i get chocked on food easily. Do you have cognitive issues? Sorry this happened to you so young.
Thank you for sharing your journey with me. Yes I did have issues in the beginning. But it has gotten better over the years. There are time when I have had setbacks but with physical therapy and medication I was able to regain some skills and strength.
Thanks for shearing! Did you have pain or you lost the strength only?
Thank you for watching! I had pain and muscle weakness.
@@myolife26583 thank you! Did you also have face pain? I have pain everywhere and is all over at this point.
so sorry you have to go through this... by any chance were you getting any muscle pain at all? I'm going through something and drs can't figure out what's going on out of nowhere I started getting muscle pain which lead to muscle pain from head to toe... I feel weak I get constant headaches... pain in my muscles 24/7 muscle spasms, and my arms and hands and feet go numb... I'm scared I may have a muscular autoimmune disease the not knowing what exactly is going on sucks
With this disease you do experience pain... I recommend seeing a rheumatologist or a neurologist to get some lab work done. They might recommend a deep tissue muscle biopsy to confirm the labs. But I have seen cases where the biopsy wasn’t needed. Also, you may have one of our “sister” diseases, like Lupus, Fibromyalgia, or Mixed Connective Tissue disease. Unfortunately going to a regular doctor sometime will get you nowhere, because they don’t focus on rare cases. They are trained to treat the general public. Keep me updated on your journey. You can also find me on Facebook under Holly Jones.
@@myolife26583 thank you so much for your reply very much appreciated... I have an appointment next week with the rheumatologist so we'll see what happens... will definitely keep you updated
Have you every tried Stem Cell Therapy
No I have not
I have Connective Tissue Disorder which is crazy complex. I understand.
rev rochelle moore I have a relative that was diagnosed with connective tissue disorder last year. She was thinking she had Myositis, but she was experiencing other symptoms as well that lead to CTD diagnosis.
My Mom has Polymyositis and underlyinf Connect Tissue Disorder. Amongst other thinhs that pop up which they can't officially say are related to PM or not (because they just don't know enough). She was diagnosed when I was 8, I'm almost 22 now. She's progrested, but she's still somewhat ndepdenant and pushing through. I'm sending both of you ladies a lot of strength💖
Did you lose strength in your hands like atrophy at all?
Mimi Dolci I have lost strength in my hands. Simple things that people take for granted like opening a water bottle or pickle jar is hard for me sometimes. Gripping small things like my pants zipper caused pain abs it doesn’t take much for my wrists to hurt. 🤦🏽♀️
@@myolife26583 im so sorry to hear this has happened my mom has been diagnosed with als but we need a 2nd opinion because she has alll of the symptoms of myositis for the last 6 yrs . when your hands rested flat on a table can you still bring the fingers close together?
Mimi Dolci yes I can. But I know some who can not. Especially the ones diagnosed with IBM. Has she tried hand exercises? Something as simple as playing and squeezing Playdoh, kinetic sand, the sticky little foam balls, and the squeeze stress balls help with hand muscles and movement
@@myolife26583 all of these diseases need more awareness very terrible my mom can squeeze and lift things but she gets carpenters hands and one finger has some swelling on the knuckle. Why did they not document the carpenter's hands and the all over body itching that shouldn't take place with als i read. Im in shock they didnt even do a muscle biopsy. She has been like this from around your age actually we just thought it was allergy 😩 im so sorry i see what the disease really does no exaggeration
Mimi Dolci Are you sure she doesn’t have Dermatomyositis? It comes with the same symptoms. But it targets the skin. I would go see a rheumatologist or neurologist that can do the proper bloodwork. If not a muscle biopsy will confirm.
I have muscle weakness especially in my front thighs if i squats to low or fall it’s extremely hard for me to get up. I found out about my Myositis because i had a miscarriage and they did a blood test and my liver enzymes were high and then my muscles were also high as well now i am finally ready to do a MRI and biopsy because I’m scared
nakeya mcfarland I’m sorry for your loss. I gave birth to a stillborn, so I understand. Don’t be afraid! You will notice that the muscle closes to your trunk or core will be the weakest. The biopsy will confirm the diagnosis. It’s not fun or easy and you will most likely have a scar. Stretching and massages always help me to feel better. Somethings Tylenol and pain pills just won’t get the job done. Thank you for watching my videos. Please keep me updated on your journey ❤️
Myo Life if you don’t mind me asking was having a stillborn due to the disease? because I want to try again but I can’t go through that i barley got through the miscarriage and I’m sorry you had to go through that ❤️
nakeya mcfarland No, Myositis had nothing to do with it. He was tangled in the umbilical cord.
Myo Life I’m sorry and thank you agin for sharing your story your videos really help me seriously thank you
Hello, what meds, did you have to take...? They just Dx me and I am in so much pain.
I am currently on Prednisone, Azathioprine, and Lasix. There are other medications that I was prescribed over the years like Methotrexate. But it really is a trial and error type of disease. You are going to have to find the right medications for your body. Also, water therapy, physical therapy, stretching, saunas, and massages help with pain. If you don’t want to take pain meds all the time. And I know this sounds crazy but the warmer the weather... the better I feel. Winter sucks! Lol! If you have anymore questions let me know. If I don’t have the answer I will definitely try to help find one!!!
@@krazynchristian9322 thank you so much. This have really been a process for me and my family. It feel like it hit me over night. I am on 60mg of Prednisone, 150mg Azathioprine, 50mg Levothyroxine and Silver antibiotics. So far I have taken two infusion call Rituxan-Rituximab. I can really say it has helped me. I am steady loosing weight, is that normal...? I have went from 333 to 254, it's like I am loosing 5lbs a week... It feel like I have no abdomen muscle.
Lameshiale Brown I’m sorry I didn’t see this message. But yes in the beginning you lose weight. Then you gain lots of fat and water weight from the prednisone especially if you aren’t active. But as they taper down the prednisone you well lose weight again. I went from 150-230-200-286-225 currently. It’s definitely a rollercoaster. 😂
@@myolife26583 thank you, I feel so good right now, I am able to walk 🙌 without my walker. I can't believe I went from a wheelchair to a walker to back walking on my own. If I can just get this breathing under control, everything will good.
Lameshiale Brown That’s great!!! I am so happy for you. And don’t worry about the breathing. The key thing to do is never panic. It makes your breathing worse. Just take you dome and focus on your breaths. Also, check and see if your doctor can prescribe Pulmonary Rehab along with your physical therapy. They are certain breathing utensils that can help exercise and improve your lung function or at least keep it steady. Thank you for the update!!! Keep me posted
I'm also suffering from myositis.I want to know what would my condition after 10 years when currently I am totally unable to climb stairs.Do all those having myositis experience extreme hairfall.
Everyone is different of course, and you have to factor in that this disease is unpredictable. With that being said, everyone I know that is 10yrs plus is thriving!!! I’m now sure if it’s the medication, a positive mindset, exercise, nutrition or a good support system. I personally think it’s a combination of those things that fit their lifestyle and the lifestyle they want to maintain or improve. I always say that slow and steady wins the race in this disease. If possible, sign up for any form of physical therapy. In the beginning I loved water therapy!!! The stairs will happen again and in 10yrs my prayer is that you will be thriving as well! Just stay on top of your treatment plan and be consistent in your exercise (your level), and continue to do things that bring you joy! Hope this helps! Keep me updated on your journey! Check out Myositis Support and Understanding and The Myositis Association. I partner with both organizations 💙
@@myolife26583 thankyou so much for bringing a light of hope.From where I can get guidance regarding nutrition, exercise, therapy and treatment that can make my life better
Hey dea do you have like an IG on something that you use to connect with people that has Polymyositis Im one of those people
Most people reach out to me on here and Facebook. If you are looking for support. Join The Myositis Association. I am on the Board of Directors and we have support groups that you can join and webinars you can attend for more information. Visit www.myositis.org
@@myolife26583 Hey dea okaye yes I did sign up on that website that's how I found you don't have a Facebook I really need to get one but yes I am looking for young women black women like me I'm 29 saw signs at 19 got diagnosed at 21 I haven't seen a doctor in about five years and I know that's bad but I'm just now learning to accept who I am now still battle with it last night I watched most of all your videos and when I saw I was a big baby because I learned things that I had no idea about that I had to ask my fiance if he really ready to be with me I thank you for your story because I really felt as if I was the only one because of what the doctor told me at 21 that's this is rare one in a million so I thought is was only me
How old are you now ?
Shamaila Amar I will be 35 in July
So still hope
Shamaila Amar There is ALWAYS HOPE, FAITH, and MIRACLES happening everyday. You can’t let this disease attack your body and your mindset or spirit! How old are you? What has your journey been like? Let me know
@@myolife26583 what medicines are you taking? Have you regained muscle strength?
Out of interest what diet would you recommend if suffering this condition?
Do u have facebook page i suffer from the same a bit confused wanted mire imformation bless
Mazzy Bibi UK Yes I do! I have 3 pages you can find me on. 1) Polymyositis: Bringing Awareness, 2) Krazy N Christian, 3) Holly Jones. I speak on Myositis on each of these pages as well a hot topics and everyday life. You can reach out to me at anytime!
Can u send me info
Myo Life I have polymyositis as well and it is very challenging and my numbers was over 50,000 and now I’m finally back down to about 150 and that’s with treatment of chemo. I’ve been blessed not to be on oxygen. Was in a wheel chair and had to relearn how to walk, talk, and everything you said. But I’m fighting and I encourage you to do the same
I am currently waiting to see a muscle specialist. I feel I may have developed Polymyositis from taking the SSRI called Luvox. Before I started taking Luvox I was a fit, lean and healthy 34 year old man who suffered from workplace anxety. Within a very short time of being on this drug, all the muscles in body broke down and turned to fat. It was really very dramatic. Things have improved over the months from doing a lot of exercise and good nutrition, but my muscles are stil quite pudgy and undefined. I haven't really noticed any real physical weakness though. Does this sound like it still could be Polymyositis ? Can drugs like anti depressants sometimes trigger Polymyositis ? Please someone let me know. Thank you.
I’m not sure if drugs can trigger Polymyositis. But I have heard of trauma or things like childbirth triggering Myositis. I’m glad to hear that you are still active and have a healthy diet. Keep it up! Keep me updated on what you find out from the muscle specialist. Have you considered seeing a Neurologist?
@@myolife26583 Thanks for the reply. Yes, I'm waiting to see a neuromuscular neurologist. Do you know if everyone who gets this condition has difficulty performing tasks which involve strength? Or do some people just have a mild form of the condition and not have any noticable strengh related issues?
Hi how are u i want to know which test I have to do after diagnosed of polymiositis 6 months
Asiya's kitchen Good morning ☀️ It depends on what your doctor recommends. I’m pretty sure that the standard bloodwork that checks your over all health will be done. The bloodwork for your CK/CPK will done. This will show the level of inflammation in your body to let you know if you need increase, decrease, or stay on the same dosage of medication. You will do a small strength test. And if you have ILD, you will have a Pulmonary Function Test and 6min walk test. But if nothing else... you can definitely expect to do some bloodwork 😩 Also, if you are just getting started you need to create your team of doctors. Preferably all under the same network, it will make it easier for them to communicate in their computer system. This will be something you NEED! You need a PCP that can monitor and keep all of your overall health information and notes from your other doctors. You will need a Rheumatologist, Pulmonologist, Cardiologists, and if possible a Physical Therapist and Nutritionist. But most importantly a therapist or some sort of counselor. You need someone you can talk to outside of family and friends. Because depression is real in Myositis. I hope this helps! Please keep me updated on your journey. Please subscribe to my channel. I can also be found on Facebook under Polymyositis Bringing Awareness!
@@myolife26583 ok thank u ☺️ sure 💜
@@myolife26583 actually my doctor from India she wrote some analysia test after six month I went today hospital but on lab they didn't understand what's wriiten so I said Ana 😅I m scared now I did wrong test
Asiya's kitchen oh no 🤦🏽♀️ I hope you got the correct test done. Most of the time the lab will verify before taking the bloodwork. Because they don’t like re-sticking people and they don’t like wasting supplies.
@@myolife26583 I hope so 😅 we went private hospital if wrong then haha 😂my husband will not leave me
Hi dear nice to. Meet u u know today only I prayed that I want some that have same problem so I can understand more and I am so scared about what will happen next because now some times I feel vibration in my body I diagnosed in December I can feel u dear insha Allah. I will pray for every one🤲plz share ur insta I'd
And I want to ask u did u try like changing ur diet and see what will be the result I really want that one day it will go negative 😔
Over the years my diet as pretty much remained the same. But I have tried eating healthier and exercising. Then there have been times when I was on “vacation” from dieting 😂 Don’t be afraid of the disease. Yes, there will be questions unanswered, but over time answers will come from experience, trial and error. You just can’t ever give up. Make sure you have a good support system and a doctor you feel comfortable with and that you feel will fight for you. Please keep me updated on your journey. ❤️
@@myolife26583 sure 😁that's really good to hear vacation is important 💜yes some times when on flares feel like that to give up but here every one story inspired me how difficult situation every one is managing 😊💜thank u