I was diagnosed with CFS and Fibromyalgia two years ago. After a career in Counter Terrorism.....It stripped me of who I was, and made me feel useless....Your videos help me, more than you will ever know....Keep fighting, you are an Angel xx
It is incredibly sad how many of us have lost careers that we worked hard for and really enjoyed. I'm so sorry that you lost such an incredible career. I hope you're as well as you can be. I lived with it for 41 years now. Not pushing yourself is the best thing that you can do. Take care 🤗
Nine long years suffering with fibromyalgia. Finally found a doctor who read my chart and said why are you not on meds you have fibromyalgia. Back to work 60 hours a week. Some good days and some bad but keeping busy helps keep my mind positive. There are days when its raining or snowing when I get home and collapse in bed but heating pad and meds and Im ready again for another day. Good luck everyone on your Fibromyalgia journey.
"it's just stress!" is a code word for "we have no idea so we'll blame it on your lifestyle and psychology". That's what they used to say about ulcers.... and then they discovered it was caused by acidity and a bacterial infection.
I love this video from start to finish. I’m 21 suffering fibro and knee pain you gave me some hope in me that I didn’t have its hard because every relationship I had with people deteriorated and I have nobody but nobody knows how it feels thank you
I know exactly how it feels. I was diagnosed when I was 21 and am now 61. It has taken me so long to learn to listen my body and not push myself. Take care of yourself 🤗
living with fibro has changed my life. im in new zealand, our technology here is not so up to date, but im glad i can met some wonderful people online to connect with, share my journey with and understand the pain.
I cannot explain how deeply I appreciate and relate to so much of your experience so far with fibro. I am incredibly inspired by your strength and so happy for your recovery (any recovery is progress!). I am twenty years old and have struggled with severe back and (as of last year) widespread body pain for the past six years. I am trying so hard to get a diagnosis but every doctor I have seen has blown me off or rejected me because of what we think it might be (fibro!). I just really appreciate having been able to watch this on such a bad pain day.
Hi Asher, I'm only just seeing your comment. Thank you for letting me know that the video was helpful. I'm sorry to hear you've been in such great pain! I hope a doctor has acknowledged your pain since you wrote. x
I've had Fibromyalgia for 25 years. With the illness and aging, i am finding it increasingly difficult to cope. My activity levels are diminishing and my world is getting smaller. It's scary. I live alone and do everything myself. Shopping, housework etc. It takes longer to complete a task. I worry about the future, when I may not be able to be independent and keep up my standards. Mostly house/bedbound now, resting as much as possible so I can manage everything. My home is minimal and easy to maintain. Shops very local. Surgery close by. I will keep on going for as long as possible. I just dread the time when I may have to go into a care facility, which will make my fibro worse. Noise, bright lights and central heating are a nightmare for me. Thank you for sharing. Hope you are doing well. 💜💜
I've had this my entire adult life. Everything flares it. The worst is when your friends, family, and co-workers judge you and are skeptical of your ailments. I have had minimal to no support. It has been a life long struggle. Stress is the worse for us!!! So many physical symptoms from emotional distress. And yes, gradual increase of exercise. I had to quit working with kids, too!!! I was CONSTANTLY sick! And being sick flares fibro then it's a vicious cycle.
I have had Fibro for going on 11 plus yrs. It has been a life changing experience, with nothing more than experimental anti depressants and pain meds it is not so much of a depression as it is frustrations. I started at the age of 40 and am now 54 the pain and agony of fatigue, migraines not being able to walk . The joint and muscle flu like symptoms. It's the craziest thing, never having pain and then having pain for no reason all over feeling like I was having a heart stroke, skin so sensitive I can sometimes not wear clothes, Thinking I was crazy then finally a rheumatologist diagnosed me with fibro after 4 yrs. You would think I would have been over joyed for finally knowing, and I was until I realized that it is such an invisible and often overlooked. So many friends and families are not willing to accept or research this condition, and with that relationship lost, so now with over 11 years later, I would like to say the pain has gotten better sadly not the case. I will say this I have never and will never let this condition take me down it has changed every aspect of my life. I have a wonderful service dog who makes my life so much more manageable, and I have a husband who adores and supports me. I also have God, who keeps me and loves me and continues to guide me, so stay strong and believe that you will overcome and I will never give in or give up only keep my head high and be grateful.
I have fibro, it was that bad I was crawling around the house on my knees sometimes, my main areas are my calves and feet. I did my own research and asked the rheumatologist to supply Low Dose Naltrexone, started off with 2mg now up to max 4.5mg. Has been an absolute godsend. It doesn't get rid of it completely but I am able to do the things I could never before.
I am suffering from fibromyalgia, and I do feel terrible, thanks for the video, I am constantly in bed with chronic fatigue and pain and even panic attacks I don’t know when I’m ever going to get control over this nightmare
Awsome video. i've had fibro for a long time and it's true what you say that you won't always feel terrible. I have good and bad days. I can't do everything a healthy person can but I can still enjoy life. Sometimes priorities have to change but that is ok. Gentle exercise, resting as needed, meds, and good nutrition help a lot. I'm impressed by your positive outlook. That is so awsome. You rock.
Thanks Emma - I am still trying to get a diagnosis - so far the GP I saw was brusque to the point of rudeness telling me " I don't have time for this" when I had taken time to write out a list of my symptoms. Oh well, onward and upward.xxx
Thank you so much for sharing this! This is the past 8 years of my life, word for word. I don't think anyone without Fibro can truly understand. I've had people say to my face "No one could be in that much pain. They'd be dead." That was helpful! But one thing I did find that helped me was eliminating gluten from my diet. It cut the frequency of migraines in half! If anyone knows of an online support group, please put in comments!
Your amazing. You have totally worked out Fibro in your short time of diagnosis what I have been trying to work out in my 23 years of living with this although only diagnosed 6 years ago. I am currently coming off of a lot of meds which is making me feel sick but already I feel my focus is returning and the fog is lifting. I also had a herniated disc in my back which then caused a flare up. Anyway enough about me. I think the one thing you said that was a big light bulb moment is to go with the pain. Respect it and listen to it. I have heard this before and given it some thought but it really makes sense. My daughter is 17 and also diagnosed with Fibro and hypermobility she fights the pain and stiffens her body to it and worse of all totally ignores the fact that she needs to listen to her body. I guess some lessons you must learn on your own. Much love from Scotland and please keep going as your private practice makes a difference to others, as does your videos and your self care makes a difference to you. Fantastic. Your a star. ❤
Hi Sheryl, thank you for your message. I hope you are feeling better since coming off the meds. I am glad that the "go with the pain" suggestion resonated with you. It made a world of difference for me. Best wishes to you and your daughter.
This is so true. Stop trying to be like everyone else. I had to learn to adjust my life around it. It’s hard but I had to listen to my body and adjust my life to it.
Thank you so much for posting this. I have had fibromyalgia and interstitial cystitis for 20 years. I'm seeing pain mgmt that just says you've tried everything this it. They don't seem to want me to get better just keep me at the same level of misery, but expect me to be socializing, working full time, which I cant. Thank you for providing some hope, because sometimes it's so dark and difficult. Bless you and may you continue to grow in wellness
Hi Sharon, thank you for your message. Your pain sounds agonising. I've been there. Please watch my "My Experience of Fibromyalgia: 2018 Update". I've learned a lot more about the condition in the past year and speak about it in that video so I think you'll find it helpful. I'm sending you love and wishing you healing and peace.
Sharon Janco I feel horrible for you. I was diagnosed with IC in 2002 absolutely insane pain . And fibro and arthritis and few years later. Any medication made my IC so much worse. It has been a tough road and there is no way I can hold down a job. Was denied disability and it breaks my heart when I know others go through the same. God has been my strength and without him I do not know where I would be. I feel for you huge. It is so sad. Praying for you.
I loved you sharing your story! I too had to make hard choices about being with children (Kindergarten)... make huge changes in my Lifestyle... but there are options... you are so right... and Life is now different, but still better for me. I am 64yrs old... and have had Fibro for 33yrs (about... probably more ... before I was diagnosed... ) Life is what we make it.... and I too live with pain most days... but I recognise and know what needs to be done... so that I can then carry on...
I hope you are doing well. I have just been diagnosed. My aunt committed suicide in May because of the continual grinding mental and physical pain of FM. It's a terrible condition. The first step is for somebody to recognise this is what you have and its not 'in your head'.
I have no idea if I have fibromyalgia. But I’ve had symptoms for almost two years now and I’m really suffering. The doctors say I’m fine and that I manifest it from stress and anxiety. They’re sending me to a psychologist as they are saying it might all be the cause of manic depression. But I’m trying so hard to convey to my family and doctors the pain and the mental fogginess I get and they’re all so ignorant. They’re trying. But I’m just constantly struggling and confused as to what the pain is and why I’m like this. Regardless if it is fibro-this video helped me feel more positive. So thank you. Good luck with it all.
Hi Nellie, I just read your comment. Regardless of what the diagnosis is, your body is communicating a message to you. Listen to it and ask yourself what you need to alleviate the pain. You know the answer better than any doctor. I wish you well! Thank you for your comment. x
Thanks to you. I am suffering it since so many years..the most painful part, no one in your family believe, this illness what you suffer. So no empathy from any corner. We have to suffer and manage self. God bless all to heal this pains
Thank you so much for expressing your fibromyalgia even now I don't talk about it although I have other tips to help people. A lot of people don't really understand the pain unless one has fibromyalgia.
Thank Emma I’m currently going through they fight of trying get a diagnosis for fibromyalgia ehlers danlos syndrome and/ functional neurological disorder. I’m hoping the local neurology team can help me find out. I have found this helpful. It’s so hard telling doctors and ophysio your are in pain them seeing it but not being able to help it.
I've recently come to think I have fibromyalgia. The pain started in my pelvis. Then went up my stomach and sides. Then to the left side of my chest and shoulder. My left ear. My left knee. The back of my right leg. My skin literally hurt to the touch. I was so tired, simple mundane tasks just took all my energy. I had ultrasounds, x-rays, ct scans, blood work, everything my doctor could think of. All come back with nothing. I had doctors tell me it was just anxiety, or I was making it up. One told me I was too young to actually be sick. Another called me a freak for being a virgin despite the fact that if a gentle hug hurts sex would probably be agonizing. One told me to stop complaining, that if little girls complained less than me I should shut up - he then spent literally 20 minutes telling me I should go to college and study computer programming. At this point I had lost faith in doctors and accepted that my pain was here to stay and I should just make the best of it. Now I have a new doctor that actually takes me seriously who believes that fibro is my problem. Though currently I don't have the insurance to even consider any kind of medical treatment, just having a name to give this makes it easier to deal with. My doctor has recommended many different natural remedies to help with the pain and though progress is VERY slow I have noticed a difference. Still just having another person talk about it is good to hear. It makes me feel like I'm not the only one to have such a difficult time trying to find a problem that you can feel but can't see. So I hope you recover well and maybe someday I can too. At least now I'm hopeful.
As a young man It's even harder to live with. The percentage is quite low and I feel like I'm in a 90yo body, I'm depressed and just by thinking I'm going to live my life with pain all over just make me want to stop. My family is the only thing that makes me want to live and some days are better than others so I guess it's alright
I've experienced the same since I was 5, unable to express the pain except to say it was in my bones. Took until my 40s to get a diagnosis and at 58 I've had no support, medically, ever. It's outrageous.
I was diagnosed with fibromyalgia in 2021, but my pain has been crippling for 3 years prior. I’ve experienced 2 failed back surgeries and nerve damage to my legs. I’m always tired and I feel like I’m in constantly in a flare up. I am always falling so I’m a mess. 🙃😭
I have pain in my hands, feet, ankles, knees, calves, shoulders, elbows, forearms. EVERYWHERE exactly like you said. I get muscle tension headaches in my neck and shoulders at least 3 to 4 times a week. I swear I feel my muscles quivering sometimes in various parts of my body even my face and scalp. I get broken up sleep and don't feel rested. Acid reflux. Intestinal cramps. Mood swings and that's not all. I've never been checked to see if it's fibro because I'm too scared it may be something else ☹
The hardest thing for me was having to leave my career as a veterinary technician. I just couldn't get pulled by dogs on leashes. Lifting dogs onto the the X Ray table. Carrying anesthetized dogs from the prep table to the surgery table. Restraining and wrestling with them. Standing for 12 hours. Just can't do it anymore. I never thought in a million years this would happen to me. But here I am and I am just now learning to accept it. I've been in the field for 20 years and I literally don't know what the fuck I'm going to do.
Thanks for the video. I’m from the UK (38yo male) and I’m lost right now. I keep thinking the doctors are missing something and now they’ve referred me to a psychiatrist because he feels my fibromyalgia is getting worse due to my mental health. I’ve had ct scans from neck to pelvis, brain/spine MRI, bloods etc and apart from advance degenerative disease in my back, nothing is wrong they said. I’ve always been in pain and have been deeply depressed, but about 8 months ago was told I have Chronic Pelvic Pain Syndrome and since lockdown I was put on ciprofloxacin (antibiotics) for 5 weeks back in April just incase there was an underlying infection to clear up. 2 weeks into taking the antibiotics, the bone breaking style pain that I was experiencing in my pelvis started getting worse, that same pain, plus new ones are all over my body now. Now I get shortness of breath that’s always there, a new deep (DEEP) burning pain thy feels like a quick blow torch, sharp pin prick sensations, stabbing and tingling... all over my body! It’s constant and has made me so depressed. I’m seeking help but it’s like no one can tell me what’s wrong (apart from fibromyalgia) or how I can get better. I’ve been put on buprenorphine patches which don’t work. It is reassuring seeing your video as you mentioned deep bone style pain in your fingers and other parts of your body, which is what I get, everywhere is affected which is new to me. Arms, legs, face, back, Chest, groin, pelvis, toes... lol you name it, it’s in pain! Is there anything I can do to help myself as I feel like there is no hope now and stay in bed and keep thinking this is it. Any advice would be much appreciated. Thank you 🙏🏻
Hi! Thank you for sharing your story. I can feel your pain and I remember what it was like to be in that space where you feel awful and it feels like there's no way out; like this is it. I'm sorry that you're in this space; it's a very lonely and scary place to be. My advice for you is seek support. If the doctors are telling you there's nothing you can do, look for someone who will either listen to u, or empathise with u, or give u just a little bit of healing. Don't look for a miracle cure. Look for little bits of healing. Things you might find helpful are craniosacral therapy, massage, physiotherapy... We're all different, so it really is a case of trial and error. But take it step by step and seek the moments that feel good and bask in them :) I wish you the best of luck.
Going on 41 years since 1982 at 20. Studied this condition for 4 decades. I help doctor's understand how debilitating the condition is but most doctors have no real life knowledge nor can they wrap their head around this. When doctors see a patient with FM/CFS they are intimidated because not only can they not cure it they cannot even effectively treat it. Not each case of FM / CFS is as debilitating as the other.
Iha e bad it ages.. diagnosis o my nine .o this ago. e edgy level is low and I get the dizziness too. Recently I ve improved after using a combination of bioresonance treatment and taking magnesium zinc calcium ..There is evidence supporting the benefits of magnesium etc for fibromyalgia..It's not easy and exhausting having to explain to people what you have. I hope you can get relief .
I wonder how I would have taken my diagnosis if the doctor had said that to me... My first time diagnosed with fibro the doctor told me "there's nothing I can do, you will have to learn to endure the pain" saying that when I was feeling a burning pain on my back, after leaving my classes, my kendo practice, even loosing my job cause I couldn't sit for more than an hour without pain... I lost it. I was diagnosed with depression a few months after and I barely left my bed. The 2nd time I was diagnosed the doctor said "fibro is a lie they say when they can't find anything" he never said I had fibro, he just said he couldn't find anything wrong with me... I was devastated, broken... A new flare up is coming I think, and I'm scared, literally scared, what new symptoms am I gonna have? What more am I gonna loose?.
Thanks for your video. I'm curious what you think the role of diet and supplements play in one's journey to reduce symptoms? What about the nervous system? Stress? Sleep? Adrenal fatigue? Which all the literature expresses is key to minimizing symptoms. Thanks love.
Hi Alicia! Thanks for your comment! I am with you 100% on the impact of diet, supplements, sleep and stress. Adrenal fatigue I haven't researched enough about but the little that I have, it definitely seems to be related. At the time I made this video, I had only just begun to switch my diet. A year and a half later, I am in a totally different space. I need to make a new video!
A Life I Choose - we should do one together! I have been through so much with fibro, and am trying absolutely everything to get better. Some things work, others do not. We should speak sometime....I've often thought about doing a you tube channel.
It's a tarlov cyst in the sacrum , you see fibromyalgia is your protector . It uses ambient pains to save you from a greater pain that is unchecked Tarlov expressed.next step dorsal-root ganglian nerve-block if it works that confirms the lesion in the sacrum 3mg melatonin can double your time on your feet , serrapetase will reduce the height of the cyst .10mg copper total some chromium picolinate your multi-vitamin . Coffee,tea, gabapentin , cymbalta, lyrica all block assimilation of iron.aloe Vera increases assimilation 2000 percent.
You've given me hope that I will get better. I will take your advice and not fight the pain. How do I deal with the depression that I'm experiencing because of it though?
Hi! In the same way. Of course you feel depressed, this condition has imposed itself on your life, completely uninvited. Once you make space for the pain, the pain will ease and your body will have time to repair. With that your energy will start to come back and with that the depression will lift. You can take care of yourself until then by being around people who make you feel good, getting out in the sunshines, going or walks and doing things that generally make you feel good x
I take 30mg duloxetine ,it makes me happy, and finally i feel like i came back to life. But still i have a lot pain. Pls could u be answer how many mg u had taken duloxetine? Thank u!
Ok I must have missed it. I just started this stuff called MSM two days ago. I think you should try it. Also this plant called Kratom. Both of those are amazing. Thanks for your help. Knowing other people are going through this helps a lot!!!!!
No, I haven't... I recently heard about cannabis patches that are meant to be pain-relieving without releasing THC into your system... May be worth looking into. x
@@ALifeIChoose how was your journey with that? Yearsss ago they had me takeing cymbalta but it scared me because when I stopped takeing it my body went through alot. So how did you just stop? So I've never wanted to try anything or listen to the docters orders because of that experience. So I never took anything else
Hi Sisa, this is an issue I think about a lot too. At the moment, my take on it is that if you want kids you will find a way to cope. We will need to be very real about our limitations and energy-levels and seek support... But I wouldn't allow the condition to stop you from experiencing the love of family in this life. x
I was lucky that my kids were already teenagers by the time I started getting really bad with my Fibro. The honest truth is that I could not look after a child full time now.
Thank you for your excellent informative loving video. I have suffered with fibromyalgia for over 20 years and I also have Hashimoto’s autoimmune disease which was diagnosed after I had my son in 1995. Currently I am on Tylenol and gabapentin around the clock. The last five days have been pure hell with the usual flu like aching, stiffness, ripping tearing burning neuropathy. I feel strapped in the electric chair with voltage jolting down to my toes and feet ripping through all extremities.
Hi Chrissy, I'm sorry to hear about all the pain you were experiencing when you posted this comment and I hope that you have found relief. Thank you for your comment. x
i have the same. For me, the peripheral neuropathy is the worst. The fatigue is also terrible. Now I'm told I have a bad thyroid too. I suspect from the medications they've had me on which I am now getting off of. (carefully)
A Life I Choose I just now found your response dear. How are you managing now ? Are you a psychologist ? Can I ask what medications you currently take, if any? Thank you. Did you know that you could join fibromyalgia group forums on Facebook? I find them very helpful and supportive
Yes, I really think there is a strong connection. After taking Cipro, a very strong and nasty antibiotic for pneumonia, my gut flora totally crashed and I became allergic/sensitive to many foods I was eating. After that, the fibro took hold. I didn't know about the gut thing for many years, only that I had all these sensitivities. I've been very slowly changing my diet and have seen improvements in pain levels, but my fear is that once fibro takes hold it never really goes away. I hope I'm wrong.
I was diagnosed with CFS and Fibromyalgia two years ago. After a career in Counter Terrorism.....It stripped me of who I was, and made me feel useless....Your videos help me, more than you will ever know....Keep fighting, you are an Angel xx
It is incredibly sad how many of us have lost careers that we worked hard for and really enjoyed. I'm so sorry that you lost such an incredible career. I hope you're as well as you can be. I lived with it for 41 years now. Not pushing yourself is the best thing that you can do. Take care 🤗
Nine long years suffering with fibromyalgia. Finally found a doctor who read my chart and said why are you not on meds you have fibromyalgia. Back to work 60 hours a week. Some good days and some bad but keeping busy helps keep my mind positive. There are days when its raining or snowing when I get home and collapse in bed but heating pad and meds and Im ready again for another day. Good luck everyone on your Fibromyalgia journey.
What meds are you on?
Drop the meds rn girl
Like tell us
"it's just stress!" is a code word for "we have no idea so we'll blame it on your lifestyle and psychology". That's what they used to say about ulcers.... and then they discovered it was caused by acidity and a bacterial infection.
I did what u did,left job after 27 yrs..best thing..no stress,really respect you
I love this video from start to finish. I’m 21 suffering fibro and knee pain you gave me some hope in me that I didn’t have its hard because every relationship I had with people deteriorated and I have nobody but nobody knows how it feels thank you
I know exactly how it feels. I was diagnosed when I was 21 and am now 61. It has taken me so long to learn to listen my body and not push myself. Take care of yourself 🤗
@@fibrowarriorsare your.hypomobile heds
living with fibro has changed my life. im in new zealand, our technology here is not so up to date, but im glad i can met some wonderful people online to connect with, share my journey with and understand the pain.
We're with you missdeenz!
Living with Fibro is very hard.
I cannot explain how deeply I appreciate and relate to so much of your experience so far with fibro. I am incredibly inspired by your strength and so happy for your recovery (any recovery is progress!). I am twenty years old and have struggled with severe back and (as of last year) widespread body pain for the past six years. I am trying so hard to get a diagnosis but every doctor I have seen has blown me off or rejected me because of what we think it might be (fibro!). I just really appreciate having been able to watch this on such a bad pain day.
I'm really glad you felt supported by my video Asher. Take good care of yourself. I know it sucks to be so misunderstood. You are doing a good job x
Hi Asher, I'm only just seeing your comment. Thank you for letting me know that the video was helpful. I'm sorry to hear you've been in such great pain! I hope a doctor has acknowledged your pain since you wrote. x
I've had Fibromyalgia for 25 years. With the illness and aging, i am finding it increasingly difficult to cope. My activity levels are diminishing and my world is getting smaller. It's scary. I live alone and do everything myself. Shopping, housework etc. It takes longer to complete a task. I worry about the future, when I may not be able to be independent and keep up my standards. Mostly house/bedbound now, resting as much as possible so I can manage everything. My home is minimal and easy to maintain. Shops very local. Surgery close by. I will keep on going for as long as possible. I just dread the time when I may have to go into a care facility, which will make my fibro worse. Noise, bright lights and central heating are a nightmare for me. Thank you for sharing. Hope you are doing well. 💜💜
How are you now do you have hypomobility
I've had this my entire adult life. Everything flares it. The worst is when your friends, family, and co-workers judge you and are skeptical of your ailments. I have had minimal to no support. It has been a life long struggle.
Stress is the worse for us!!! So many physical symptoms from emotional distress. And yes, gradual increase of exercise. I had to quit working with kids, too!!! I was CONSTANTLY sick! And being sick flares fibro then it's a vicious cycle.
Hi Gypsylvia, I'm sorry to hear you've had to struggle so much with fibro. It is hard. I hope that those around you will realise you need support.
I have had Fibro for going on 11 plus yrs. It has been a life changing experience, with nothing more than experimental anti depressants and pain meds it is not so much of a depression as it is frustrations. I started at the age of 40 and am now 54 the pain and agony of fatigue, migraines not being able to walk . The joint and muscle flu like symptoms. It's the craziest thing, never having pain and then having pain for no reason all over feeling like I was having a heart stroke, skin so sensitive I can sometimes not wear clothes, Thinking I was crazy then finally a rheumatologist diagnosed me with fibro after 4 yrs. You would think I would have been over joyed for finally knowing, and I was until I realized that it is such an invisible and often overlooked. So many friends and families are not willing to accept or research this condition, and with that relationship lost, so now with over 11 years later, I would like to say the pain has gotten better sadly not the case. I will say this I have never and will never let this condition take me down it has changed every aspect of my life. I have a wonderful service dog who makes my life so much more manageable, and I have a husband who adores and supports me. I also have God, who keeps me and loves me and continues to guide me, so stay strong and believe that you will overcome and I will never give in or give up only keep my head high and be grateful.
Do you have heds with fybromyalgia
I have fibro, it was that bad I was crawling around the house on my knees sometimes, my main areas are my calves and feet. I did my own research and asked the rheumatologist to supply Low Dose Naltrexone, started off with 2mg now up to max 4.5mg. Has been an absolute godsend. It doesn't get rid of it completely but I am able to do the things I could never before.
I am suffering from fibromyalgia, and I do feel terrible, thanks for the video, I am constantly in bed with chronic fatigue and pain and even panic attacks I don’t know when I’m ever going to get control over this nightmare
I ve had it for years
People don’t understand .
And they think your a recluse .
But it’s not like that ...
Same for me I can understand ...
Awsome video. i've had fibro for a long time and it's true what you say that you won't always feel terrible. I have good and bad days. I can't do everything a healthy person can but I can still enjoy life. Sometimes priorities have to change but that is ok. Gentle exercise, resting as needed, meds, and good nutrition help a lot. I'm impressed by your positive outlook. That is so awsome. You rock.
Thanks Vikki, I appreciate your comment and the positive energy you bring too. Keep well x
Vicki Montgomery I agree ❤️
Thanks Emma - I am still trying to get a diagnosis - so far the GP I saw was brusque to the point of rudeness telling me " I don't have time for this" when I had taken time to write out a list of my symptoms. Oh well, onward and upward.xxx
I'm sorry you had that experience Helen. Listen to your body. It will tell you more than any doctor about what you need to heal. xxx
I agree. what do u expect to hear from these uninformed doctors? if u feel unwell you aren't well and you can look for treatments!
Thank you so much for sharing this! This is the past 8 years of my life, word for word. I don't think anyone without Fibro can truly understand. I've had people say to my face "No one could be in that much pain. They'd be dead." That was helpful! But one thing I did find that helped me was eliminating gluten from my diet. It cut the frequency of migraines in half! If anyone knows of an online support group, please put in comments!
Have the exact same experience. Was officially diagnosed a few months ago. So nice to hear someone who went through the exact struggle I did.
Your amazing. You have totally worked out Fibro in your short time of diagnosis what I have been trying to work out in my 23 years of living with this although only diagnosed 6 years ago. I am currently coming off of a lot of meds which is making me feel sick but already I feel my focus is returning and the fog is lifting. I also had a herniated disc in my back which then caused a flare up. Anyway enough about me. I think the one thing you said that was a big light bulb moment is to go with the pain. Respect it and listen to it. I have heard this before and given it some thought but it really makes sense. My daughter is 17 and also diagnosed with Fibro and hypermobility she fights the pain and stiffens her body to it and worse of all totally ignores the fact that she needs to listen to her body. I guess some lessons you must learn on your own.
Much love from Scotland and please keep going as your private practice makes a difference to others, as does your videos and your self care makes a difference to you. Fantastic. Your a star. ❤
Hi Sheryl, thank you for your message. I hope you are feeling better since coming off the meds. I am glad that the "go with the pain" suggestion resonated with you. It made a world of difference for me. Best wishes to you and your daughter.
How are you now sound though your daughter has beds like myself
This is so true. Stop trying to be like everyone else. I had to learn to adjust my life around it. It’s hard but I had to listen to my body and adjust my life to it.
Thank you so much for posting this. I have had fibromyalgia and interstitial cystitis for 20 years. I'm seeing pain mgmt that just says you've tried everything this it. They don't seem to want me to get better just keep me at the same level of misery, but expect me to be socializing, working full time, which I cant. Thank you for providing some hope, because sometimes it's so dark and difficult. Bless you and may you continue to grow in wellness
Hi Sharon, thank you for your message. Your pain sounds agonising. I've been there. Please watch my "My Experience of Fibromyalgia: 2018 Update". I've learned a lot more about the condition in the past year and speak about it in that video so I think you'll find it helpful. I'm sending you love and wishing you healing and peace.
Sharon Janco I feel horrible for you. I was diagnosed with IC in 2002 absolutely insane pain . And fibro and arthritis and few years later. Any medication made my IC so much worse. It has been a tough road and there is no way I can hold down a job. Was denied disability and it breaks my heart when I know others go through the same. God has been my strength and without him I do not know where I would be. I feel for you huge. It is so sad. Praying for you.
@@janetshanbacher1737 I also have IC& fibromyalgia & I wouldn't be here only for my faith& prayer
@@jcomer7368do you have hypomobility check out Dr lenz fybromyalgia CFS 27 years causation late diagnosed autism ADHD heds
I loved you sharing your story! I too had to make hard choices about being with children (Kindergarten)... make huge changes in my Lifestyle... but there are options... you are so right... and Life is now different, but still better for me. I am 64yrs old... and have had Fibro for 33yrs (about... probably more ... before I was diagnosed... ) Life is what we make it.... and I too live with pain most days... but I recognise and know what needs to be done... so that I can then carry on...
This video has been a Godsend! Thank you. You've given me hope.
I hope you are doing well. I have just been diagnosed. My aunt committed suicide in May because of the continual grinding mental and physical pain of FM. It's a terrible condition. The first step is for somebody to recognise this is what you have and its not 'in your head'.
So sorry for your loss 😢
Get checked for ADHD autism heds my aunt's all have it to my father had CFS rccx gene theory so sorry another fybromyalgia warrior lost
I have no idea if I have fibromyalgia. But I’ve had symptoms for almost two years now and I’m really suffering. The doctors say I’m fine and that I manifest it from stress and anxiety. They’re sending me to a psychologist as they are saying it might all be the cause of manic depression. But I’m trying so hard to convey to my family and doctors the pain and the mental fogginess I get and they’re all so ignorant. They’re trying. But I’m just constantly struggling and confused as to what the pain is and why I’m like this. Regardless if it is fibro-this video helped me feel more positive. So thank you. Good luck with it all.
Hi Nellie, I just read your comment. Regardless of what the diagnosis is, your body is communicating a message to you. Listen to it and ask yourself what you need to alleviate the pain. You know the answer better than any doctor. I wish you well! Thank you for your comment. x
Hi Nellie! Please don’t let the stupid drs get to you. Keep seeking different opinions from different drs. It’s YOUR RIGHT! Good luck 💕✨✨✨
Thanks to you. I am suffering it since so many years..the most painful part, no one in your family believe, this illness what you suffer. So no empathy from any corner. We have to suffer and manage self. God bless all to heal this pains
Thank you so much for expressing your fibromyalgia even now I don't talk about it although I have other tips to help people. A lot of people don't really understand the pain unless one has fibromyalgia.
Thank Emma I’m currently going through they fight of trying get a diagnosis for fibromyalgia ehlers danlos syndrome and/ functional neurological disorder. I’m hoping the local neurology team can help me find out. I have found this helpful. It’s so hard telling doctors and ophysio your are in pain them seeing it but not being able to help it.
Me to now diagnosed 43 heds asperger's add what a fight just lost my mum.to severe ms that should of pointed to family heds aspy sins now diagnosed
Thank you for this. This is my story too, and am glad it not just me. For at times I feel so alone.
Thank you
I've recently come to think I have fibromyalgia. The pain started in my pelvis. Then went up my stomach and sides. Then to the left side of my chest and shoulder. My left ear. My left knee. The back of my right leg. My skin literally hurt to the touch. I was so tired, simple mundane tasks just took all my energy. I had ultrasounds, x-rays, ct scans, blood work, everything my doctor could think of. All come back with nothing. I had doctors tell me it was just anxiety, or I was making it up. One told me I was too young to actually be sick. Another called me a freak for being a virgin despite the fact that if a gentle hug hurts sex would probably be agonizing. One told me to stop complaining, that if little girls complained less than me I should shut up - he then spent literally 20 minutes telling me I should go to college and study computer programming. At this point I had lost faith in doctors and accepted that my pain was here to stay and I should just make the best of it. Now I have a new doctor that actually takes me seriously who believes that fibro is my problem. Though currently I don't have the insurance to even consider any kind of medical treatment, just having a name to give this makes it easier to deal with. My doctor has recommended many different natural remedies to help with the pain and though progress is VERY slow I have noticed a difference. Still just having another person talk about it is good to hear. It makes me feel like I'm not the only one to have such a difficult time trying to find a problem that you can feel but can't see. So I hope you recover well and maybe someday I can too. At least now I'm hopeful.
This is just what I needed!!!
Thankyou. Much needed gentle positivity.
FM has ruined my life. Day in & day out, it never lets up
I'm sorry you are suffering x
Same it ruined my life, full blown ruined. I'm only 30, yet I've lost everything, its the kind of end game only meant for old people
@@strifethewise9249do you have hypomobility I've had CFS 26 years fybromyalgia 7 found out I have autism ADHD causation
As a young man It's even harder to live with. The percentage is quite low and I feel like I'm in a 90yo body, I'm depressed and just by thinking I'm going to live my life with pain all over just make me want to stop. My family is the only thing that makes me want to live and some days are better than others so I guess it's alright
I've experienced the same since I was 5, unable to express the pain except to say it was in my bones. Took until my 40s to get a diagnosis and at 58 I've had no support, medically, ever. It's outrageous.
Its so relatable to me as i diagnosed with fibromyalgia since 14 years
I was diagnosed with fibromyalgia in 2021, but my pain has been crippling for 3 years prior. I’ve experienced 2 failed back surgeries and nerve damage to my legs. I’m always tired and I feel like I’m in constantly in a flare up. I am always falling so I’m a mess. 🙃😭
Is the falling due to fnd
I have pain in my hands, feet, ankles, knees, calves, shoulders, elbows, forearms. EVERYWHERE exactly like you said. I get muscle tension headaches in my neck and shoulders at least 3 to 4 times a week. I swear I feel my muscles quivering sometimes in various parts of my body even my face and scalp. I get broken up sleep and don't feel rested. Acid reflux. Intestinal cramps. Mood swings and that's not all.
I've never been checked to see if it's fibro because I'm too scared it may be something else ☹
The hardest thing for me was having to leave my career as a veterinary technician. I just couldn't get pulled by dogs on leashes. Lifting dogs onto the the X Ray table. Carrying anesthetized dogs from the prep table to the surgery table. Restraining and wrestling with them. Standing for 12 hours. Just can't do it anymore. I never thought in a million years this would happen to me. But here I am and I am just now learning to accept it. I've been in the field for 20 years and I literally don't know what the fuck I'm going to do.
Thanks for the video. I’m from the UK (38yo male) and I’m lost right now. I keep thinking the doctors are missing something and now they’ve referred me to a psychiatrist because he feels my fibromyalgia is getting worse due to my mental health. I’ve had ct scans from neck to pelvis, brain/spine MRI, bloods etc and apart from advance degenerative disease in my back, nothing is wrong they said. I’ve always been in pain and have been deeply depressed, but about 8 months ago was told I have Chronic Pelvic Pain Syndrome and since lockdown I was put on ciprofloxacin (antibiotics) for 5 weeks back in April just incase there was an underlying infection to clear up. 2 weeks into taking the antibiotics, the bone breaking style pain that I was experiencing in my pelvis started getting worse, that same pain, plus new ones are all over my body now. Now I get shortness of breath that’s always there, a new deep (DEEP) burning pain thy feels like a quick blow torch, sharp pin prick sensations, stabbing and tingling... all over my body! It’s constant and has made me so depressed. I’m seeking help but it’s like no one can tell me what’s wrong (apart from fibromyalgia) or how I can get better. I’ve been put on buprenorphine patches which don’t work. It is reassuring seeing your video as you mentioned deep bone style pain in your fingers and other parts of your body, which is what I get, everywhere is affected which is new to me. Arms, legs, face, back, Chest, groin, pelvis, toes... lol you name it, it’s in pain! Is there anything I can do to help myself as I feel like there is no hope now and stay in bed and keep thinking this is it. Any advice would be much appreciated. Thank you 🙏🏻
Hi! Thank you for sharing your story. I can feel your pain and I remember what it was like to be in that space where you feel awful and it feels like there's no way out; like this is it. I'm sorry that you're in this space; it's a very lonely and scary place to be. My advice for you is seek support. If the doctors are telling you there's nothing you can do, look for someone who will either listen to u, or empathise with u, or give u just a little bit of healing. Don't look for a miracle cure. Look for little bits of healing. Things you might find helpful are craniosacral therapy, massage, physiotherapy... We're all different, so it really is a case of trial and error. But take it step by step and seek the moments that feel good and bask in them :) I wish you the best of luck.
Going on 41 years since 1982 at 20. Studied this condition for 4 decades.
I help doctor's understand how debilitating the condition is but most doctors have no real life knowledge nor can they wrap their head around this. When doctors see a patient with FM/CFS they are intimidated because not only can they not cure it they cannot even effectively treat it. Not each case of FM / CFS is as debilitating as the other.
And CFS causes fm
Thankyou so much for your help and advice and you give my mother and I hope x. Take care
you talk sense! Great video. Big thank you for your story.
Thank you for this video. Have you done or would you do an update? I'd really like to know how you're doing now.
I have Fybermyalgia and Arthritis. The chronic fatigue i experience is unreal. I sleep my life away. Very little helps.
Have you tryed ADHD meds
Iha e bad it ages.. diagnosis o my nine .o this ago. e edgy level is low and I get the dizziness too. Recently I ve improved after using a combination of bioresonance treatment and taking magnesium zinc calcium ..There is evidence supporting the benefits of magnesium etc for fibromyalgia..It's not easy and exhausting having to explain to people what you have. I hope you can get relief .
Sending you love Valerie!
I wonder how I would have taken my diagnosis if the doctor had said that to me... My first time diagnosed with fibro the doctor told me "there's nothing I can do, you will have to learn to endure the pain" saying that when I was feeling a burning pain on my back, after leaving my classes, my kendo practice, even loosing my job cause I couldn't sit for more than an hour without pain... I lost it. I was diagnosed with depression a few months after and I barely left my bed. The 2nd time I was diagnosed the doctor said "fibro is a lie they say when they can't find anything" he never said I had fibro, he just said he couldn't find anything wrong with me... I was devastated, broken... A new flare up is coming I think, and I'm scared, literally scared, what new symptoms am I gonna have? What more am I gonna loose?.
Great! That is what about fibra. To start to listen your self!
hi mam thanks a lot for this helpful video. . ur inspiration. ..plz suggest some diet and exercise. .
Thanks for your video. I'm curious what you think the role of diet and supplements play in one's journey to reduce symptoms? What about the nervous system? Stress? Sleep? Adrenal fatigue? Which all the literature expresses is key to minimizing symptoms. Thanks love.
Hi Alicia! Thanks for your comment! I am with you 100% on the impact of diet, supplements, sleep and stress. Adrenal fatigue I haven't researched enough about but the little that I have, it definitely seems to be related. At the time I made this video, I had only just begun to switch my diet. A year and a half later, I am in a totally different space. I need to make a new video!
A Life I Choose - we should do one together! I have been through so much with fibro, and am trying absolutely everything to get better. Some things work, others do not. We should speak sometime....I've often thought about doing a you tube channel.
You should do it if that's what you want to do!
It's a tarlov cyst in the sacrum , you see fibromyalgia is your protector . It uses ambient pains to save you from a greater pain that is unchecked Tarlov expressed.next step dorsal-root ganglian nerve-block if it works that confirms the lesion in the sacrum 3mg melatonin can double your time on your feet , serrapetase will reduce the height of the cyst .10mg copper total some chromium picolinate your multi-vitamin . Coffee,tea, gabapentin , cymbalta, lyrica all block assimilation of iron.aloe Vera increases assimilation 2000 percent.
Thank you for sharing ❤️
Thanks for sharing your story. I was diagnosed 2.5 years ago and my 18 year old 6 months ago. Fibro is such a crazy, stupid thing isn't it?
It is :) It can be so frustrating x
much love Emma.. xx
So helpful.
You've given me hope that I will get better. I will take your advice and not fight the pain. How do I deal with the depression that I'm experiencing because of it though?
Hi! In the same way. Of course you feel depressed, this condition has imposed itself on your life, completely uninvited. Once you make space for the pain, the pain will ease and your body will have time to repair. With that your energy will start to come back and with that the depression will lift. You can take care of yourself until then by being around people who make you feel good, getting out in the sunshines, going or walks and doing things that generally make you feel good x
What medications did the fibromyalgia doctor put you on in that first year? You didn't say
never give up n take b 12 it works good luck
Thanks Tina!
What medication did you take (if you don't mind me asking)?
Duloxetine
Thank you!!!!
I take 30mg duloxetine ,it makes me happy, and finally i feel like i came back to life. But still i have a lot pain. Pls could u be answer how many mg u had taken duloxetine?
Thank u!
Helpful thankyou x
Thanks for this video . I am experiencing the same symptoms you mentioned. !
Take care of yourself Sherrona!
Thank you. Happy New Year 2018
I m same very painfull my body I got foggy brain
How about counselling kids and teenagers?
1:52 into the video and already everything you just described to this point I'm experiencing!!! :O
You too!!!
So you practised mindfulness to deal with the pain. 🙂👍
oh n if u wish smoke or eat weed it also helps best wish's
Where live you still work
Wew.... I feel better now, after that rant
Take high dose tumeric supplements. That was miracle for me.
Any one you recommend in particular please?
Your are so beautiful. I don't understand why or how we go through it. I just hope its brought you closer to God.
Thank you David x
Welcome. Did you mention what the treatment was? I have to find something to help.
Yes, in the video, I mentioned all aspects of the treatment. The meds I took were duloxetine.
Ok I must have missed it. I just started this stuff called MSM two days ago. I think you should try it. Also this plant called Kratom. Both of those are amazing. Thanks for your help. Knowing other people are going through this helps a lot!!!!!
Thanks for the suggestions David! Take good care of yourself x
A constant unwanted companion. Thank you
excuse typos. energy level low ..
Do you know of any medicine for fibromyalgia that you can safely take during pregnancy?
No, I haven't... I recently heard about cannabis patches that are meant to be pain-relieving without releasing THC into your system... May be worth looking into. x
When I can't consecrate than I m angry
how long have you had fibro?
A long time...but only received a diagnosis just over a year ago.
What Medication are you taking sweetheart.
Hi, I used to take duloxetine. I'm off it now!
@@ALifeIChoose how was your journey with that? Yearsss ago they had me takeing cymbalta but it scared me because when I stopped takeing it my body went through alot. So how did you just stop? So I've never wanted to try anything or listen to the docters orders because of that experience. So I never took anything else
can I have kids with fibromyalgia? 😢
Hi Sisa, this is an issue I think about a lot too. At the moment, my take on it is that if you want kids you will find a way to cope. We will need to be very real about our limitations and energy-levels and seek support... But I wouldn't allow the condition to stop you from experiencing the love of family in this life. x
I was lucky that my kids were already teenagers by the time I started getting really bad with my Fibro. The honest truth is that I could not look after a child full time now.
Thank you for your excellent informative loving video. I have suffered with fibromyalgia for over 20 years and I also have Hashimoto’s autoimmune disease which was diagnosed after I had my son in 1995. Currently I am on Tylenol and gabapentin around the clock. The last five days have been pure hell with the usual flu like aching, stiffness, ripping tearing burning neuropathy. I feel strapped in the electric chair with voltage jolting down to my toes and feet ripping through all extremities.
Hi Chrissy, I'm sorry to hear about all the pain you were experiencing when you posted this comment and I hope that you have found relief. Thank you for your comment. x
i have the same. For me, the peripheral neuropathy is the worst. The fatigue is also terrible. Now I'm told I have a bad thyroid too. I suspect from the medications they've had me on which I am now getting off of. (carefully)
Sending you love Melanie!
Thank you so much, you sweet, beautiful lady!! Back to you, too! *Mel
A Life I Choose I just now found your response dear. How are you managing now ? Are you a psychologist ? Can I ask what medications you currently take, if any? Thank you. Did you know that you could join fibromyalgia group forums on Facebook? I find them very helpful and supportive
Does anybody feel that Fibromites suffer
From an imbalance of intestinal flora ??
Yes, I really think there is a strong connection. After taking Cipro, a very strong and nasty antibiotic for pneumonia, my gut flora totally crashed and I became allergic/sensitive to many foods I was eating. After that, the fibro took hold. I didn't know about the gut thing for many years, only that I had all these sensitivities. I've been very slowly changing my diet and have seen improvements in pain levels, but my fear is that once fibro takes hold it never really goes away. I hope I'm wrong.
Thanks for your comment, Chrissy! Diet has helped me immensely! I'll be making some new videos about this. x