Hi. Great information. I did have needle poke spread. If I may make a suggestion can you please not play music in the background as your talking. For me, noise and sound never bothered me for the last 12 years . However now I understand why people have said sounds and noise can be difficult with this illness. Thanks so much
With you needle poke spread, does it only affect the area that was poked? Or the entire limb? I was poked by several needles for infusions prior to getting a port, and now feel like I'm being poked in the same spot all the time. It doesn't affect my whole limb. However I was poked by a rose bush thorn in my thumb knuckle. It blew up huge and now my entire right arm/shoulder is affected. Thank you for the feedback :-)
@@TheCRPSNetwork hi, Yes it's more I'm my hand and its HORRIBLE. My hand felt like it was on fire when I came home from the hospital. Luckily it eased up but on the whole hand left me with 2 fingers numb tingly. It's hard though cuz I NEVER had a problem with that hand or arm.. SHHHH. arm is not crazy painful. (I do not want it to hear me) . The hand swells also so. Yeppers . Ugh. Unfortunately my drs are not well versed in CRPS. I tried to tell them... I should have gotten a port. Can u tell me how that works. ? I haven't been lucky to get infusions yet but that WILL BE NEXT.. thanks
@@girlwhosbeenthroughalot4997 good luck to you and be gentle with the other side not affected praying so it doesn t spread to all your joints. In my experience even injury sites that are over 5 years old can be spreaders.
I have never liked background music and it has nothing to do with my CRPS. The reason is that I am a classical music lover and my attention is divided between wanting to listen to the music or to the voice. It's even more stressful if it's popular music!
I went 3 years with no diagnosis or treatment. It started in my left foot and spread to both my legs and to above my hips. It was horrifying to feel this pain slowly crawl it's way up my body, and there was nothing I could do because no one believed my pain
I don’t know how anyone with CRPS can ignore it! I was suicidal with pain! I finally was diagnosed 8 months after a terrible wrist injury and surgery in which the surgeon told me I was being dramatic and cut off my pain medicine. I went to the University of Washington medical center in Seattle Wa and as soon as that orthopedic surgeon looked at my wrist he told me I had CRPS. I’ve had a nerve block and now treated with the appropriate meds so I can function much better and get through physical therapy. Thank you for the video as I’m still researching ways to control my CRPS. Best of luck to you all. 💕
i have the same type of story . the whole thing basically but i'm at the point where i'm going to get a shot of cortisone in my neck i belive for my arm and hand
ace b I wish you the best of luck! The nerve block I had done really helped the nerve pain (my hand felt like it was on fire), that was in April of 2017 and I’m doing better but still continue to suffer from CRPS.
@@staceyshaffer180 was it the cortisone shot ? And after I have to do pt which is ok but after the shot wears out I heard I would be in tremendous pain?
ace b hi ace, I had a Sympathetic nerve block. They injected through my neck and the procedure took about 10 minutes. I felt immediate relief! It reduced the nerve pain about 75% for a good eight months. It was the best pain relief I’ve had. I believe you can only do one a year and I’m going to get another in July. I also started a probiotic diet and I think that has helped. I wish you the best.
I don’t know why there is no discussion about bisphosphonate infusions. They work. I know of at least 5 other sufferers and my wife that have had marked improvement with Neridronate infusions in Italy. Pamidronate that is available here in the US helped my wife get off the Gabapentin. We had Neridronate in Italy last year and are going back for one more round this week to try and tip her into full remission. This is a close to a cure that we can get. Please investigate it.
I was initially diagnosed with RSD/CRPS in my right knee of which spread to my entire right leg. I then had GBS and later diagnosed with CIDP. With exacerbations of the CIDP the RSD/CRPS spread further up my spine eventually spreading to my arms and even my face. I have since had a port placed (March of 2018) and receive monthly infusions of IVIG which not just seems to keep the CIDP in check but also the RSD/CRPS from getting worse. You are entirely on point with stress making the pain worse. Luckily repeated IV sticks didn't seem to bother the CRPS but it definitely didn't help with the pain. Last year I started vaping CBD and that has also seems to help with the pain but quite recently I was placed on methadone of which brings the pain from a almost constant 7 down to a 2. The CBD quite often will bring the pain down to a 0 so that definitely helps matters.
Leslie, thank you for sharing! That is awesome that you get IVIG! I did another video about it recently. A good friend of mine who was an ER nurse, with CRPS, she gets IVIG too and swears by it. For sure mmj helps me too (with CBD).
I read your msg regarding your CRPS Spreading! The right side of my mouth & ting swelled up that I felt my neck almost exploding of Pure Pain! Did you feel like that? What did you do?
I have it in two limbs on my right side now. Right ankle and arm/wrist now… due to a new injury, and it worst in the wrist, then it is in the ankle, it sucks but I have a great team helping me take natural approaches in managing it. ❤❤❤
Hi I have RSD. CRPS. GOING ON NOW OVER 20 years it is not fun. Neuro and Biofedbac does help. Just take it slow with what you do and you can control the pain trust me then life goes on. 👌👍😃
It is not only the pain which debilitates us but the sense of fatigue that affects the whole body. Pain may originate in only one spot - for me, along the pinkie finger, the ulnar nerve - but that one, small spot causes me to lose energy and makes me want to be in bed most of the time (I am retired so my time is my own).
I have had my CRPS spreading from one leg to the other in just months...I would not wish this pain on anyone! And doctors seem to not understand how to treat it aside from giving me meds on top of meds, it took them almost a year to diagnose me. I'm considering treatment elsewhere since the US seems to not have the means for it...found this clinic in Italy and their doctors seem very knowledgeable, they say they have treated patients for more than 9 years. I have hope this might be it for me.
So sorry for the pain you experience. I have it too so I understand. Please write back and say what you found in Europe, especially Italy, that you mentioned. Europe always has a head of the US when it comes to medicine. I wish you the best and look forward to hearing from you again.
@@irmichaels1955 I found this clinic in Italy, apparently they have a treatment that was patented specifically for Crps. I found them on facebook through one of the groups, it's called Neridronate treatment, I'm currently talking to one of their patient coordinators and they have been very kind in answering all of my questions...! I'm thinking of doing the evaluation with them to see if I'm an eligible candidate for the treatment. I looked at their website and read all about their success stories and it is really giving me a lot of hope! I can give you their website info if you would like.
I have had RSD/CRPS for 44 years. Started in my right ankle, foot due to a brown recluse spider bite. Is this treatment Ketamine infusions? Please, if you decide to go, will you keep us informed. Mine has spread so much.
I suffer from crps & trigeminal neuralgia on my face and my jaw. It is the worst, most miserable excruciatingly relentless kind of pain. Does anyone else have it in their face or jaw? I've had this since 2002 & i'd do anything for a cure! Hopefully one day they will find a cure.
I;m so sorry...you unfortunately have like 2 of the most painful conditions. I actually have 2 good friends who have both trigeminal neuralgia and CRPS. I feel like there must be a link between the two.
@@TheCRPSNetwork I'm sorry to hear about your friends. Both my trigeminal neuralgia and crps were both caused by trauma from bilateral total joint replacement surgery of my tmj joints. They both are truly brutal brutal painful conditions that can literally suck your entire life out of you!
I was at a clinic that used The Scramble machine. One of their patients had trigeminal neuralgia and that therapy helped that person. Worth a try. Or in the alternative health world, ozone treatments can do wonders.
@@creativegirl9710 Thank you so much for passing this Info on to me. I will definitely look into it and see if it is something that could benefit me. I'm willing to do just about anything at this point. Thank you so much again!
I was able to get through the pain by overloading my senses to make my brain pay attention to what I was focusing on. Sight, touch, smell, sound taste… pain is gone instantly. It works when you have nerve pain.
I went through a very painful emg it was definitely worse and slightly larger area after, but I was told it was my imagination. I have a better doctor now
That’s terrible. I try to urge people not to do the EMG. I did the test too, It was very early in my diagnosis when I didn’t know any better. It was the most painful thing I’ve experienced and I believe it caused spreading for me as well. There’s a video on this channel about the EMG. You should leave a comment there too, so anyone considering it, that comes across that video can see what happened in your situation. Thanks for sharing!
I was recently diagnosed with Fibromyalgia, small fiber neuropathy & CRPS. It's been a very bumpy ride getting here. I haven't been given treatment plan yet. I've changed my diet, no sugar & low carbs. Taking vitamin supplements and going to PT twice weekly. I see my pain doctors in three weeks until then anything you recommend? Enjoy your informative videos.
Yes, I have another video about holistic treatments for CRPS, there maybe some things that you can do from that video that could help. Vitamin C is the most important. Don't immobilize your affected limb....keep it moving, but don't overdo it. Don't ice your limb. Make sure to seek help from a specialist that has experience with CRPS and understands the most current treatments for it. Sometimes this requires traveling. Same with any physical therapist. Good luck and keep us posted!
Limit Opioids they're super helpful when your lifes hell but dependency causes Central Sensitization, cold makes mine worse. CBD/THC help me CBD is much less psychoactive and refined " CBD Isolate" is %100 CBD no THC. Kratom and Kava depending on local laws and herbs like lavender California poppy so on. Don't get on a ton of prescription meds your Kidney and Liver need to be thought of alot of Foods/Pharmaceuticals/Plants can interact in your liver Badly/Fatally. Ketamine is a God Send although it may not fix your CRPS it may provide temporary relief Ketamine Nasal Spray is a good rescue medicine that's not an opioid. Benzos can sometimes be amazing but seriously be careful not to become dependent CRPS+Withdrawal/dependence is a recipe for disaster it sensitizes every nerve. Compounding pharmacies can do ER Ketamine/DXM capsules NMDA receptor antagonists/dissociatives are what helps me most but you can't take them forever and tolerance is an issue
Great video! Even with having CRPS for at least 10 years, I've not had it spread. I've had numerous needles and surgeries with no problem. I've even asked my doctor if I've been misdiagnosed. He said no, I've just been fortunate in that area. However, I'm facing surgery in my opposite ankle (crps is in my left ankle). He's concerned it'll spread to my right ankle since crps tends to go bilateral. Do you know if it's really a higher risk? Thanks so much! Love your videos!
Pat, Thank you so much!! Wow, that's great about not having any spreading this long!!! Yes, going from one limb to the opposite limb is the most common direction it spreads. After that, going on the same side (left ankle to left arm) is most common and a diagonal spread is the least common. Someone else just asked about information concerning spreading with future surgeries, which has prompted me to make a video about the topic. I will post in a couple of weeks. Here is some information about it in the meantime: anesthesiology.pubs.asahq.org/article.aspx?articleid=1942048
My luck ran out. I had surgery in my right ankle in January. Within a week the electrical shock pains started. I was officially diagnosed last month and am awaiting a nerve block. I got my answer the hard way.... yes, there's an increased chance for a bilateral spread. :(
I'm gay but in a Gerard Way my daughter 9 was diagnosed this past spring. I know you may not feel “normal” any longer, but it’s a new normal you just have to get used to. She has it in her right foot, and sometimes it flares in her right arm. Right now after falling on the skateboard she thinks she may have it in her left wrist. If you ever want to talk to her, to have a kid that understands what you’re going through, she’d be more than happy to. You’re not alone and you can have all the support you need. It’s a disease that no one should go through, especially alone.
@@nateone6632 same, does it for wrists too. Had ankle fracture and now both ankles are affected by CRPs and fibro...30 minuts walks and im struggling to walk :/ if I use my good hand (right hand) it also ends up in flare just like the left one.....no idea what life will entail now...
Yikes! That's unfortunate about the physical therapy leading to spreading. Do you think the physical activity was just too much strain or an unexperienced PT?
The CRPS Network I had a pretty good pt I was put in aqua therapy 3 months later it went to my arm and other legs i would only do like half hour a day but sometimes PT isn’t for everyone tho but I still walk around though
@@TheCRPSNetwork I had CRPS since 2018. I had shoulder surgery, had 2 nerve blocks before the surgery. Now it has spread to my stomach legs, right arm, right hand, my lower back. I can hardly use my hand, it gets numb, burns, hot, deep ache , turns purple, red, pins and needles.
Mine spread by EGD and it’s in stomach and it’s like I have a stomach virus everyday for over 2 years. I got CRPS after a frontal back surgery doing a fusion placing a cage removing stomach for neurosurgeon to get to back with no pain meds as it causes severe uncontrollable vomiting and surgery prior I was placed back to sleep as they can’t stop my vomiting. This surgery was too much trauma with only Tylenol for my body. The surgery didn’t fuse after 6 months either and a different neurosurgeon best in country said never let anyone touch my back and I can only pray for a miracle. So I have two issues but CRPS was just in both legs from thighs down to toes and yes you want your legs cut off. Your bowels and bladder immediately stopped working. Your stomach swelled like your 5 months pregnant and never will go down. I was an avid exerciser and 111 and now 160 and my stomach has no lining, bloody mess, extreme swollen, hiatal hernia, extreme IBS, atrierial papilla, and ulcers, and I am leaking bile for 2 years now out my nose but Famotidinr helps with that and always with bowels. I now am suffering with awful pain in stomach and kidney area and no one can figure it out and the nausea has gotten even more severe that I can’t eat and if I eat even anti inflammatory diet when food touches stomach I feel horrible pains, sweating, severe nausea. I just live on Zofran and they can’t find the cause but the CRPS is causing havock inside my stomach. I got it in my face. It was awful pain that lasted hours on end of teeth, jaw, face, eyes, head, nose pain and I wanted my husband to kill me, take me in the middle of Covid and beg for me to be put in a coma. My teeth are coming out. I have something wrong I guess a gum disease. My eyes already were getting bad and now really bad and barely can see. They need cataract surgery but I was told no surgeries. I was told that EGD caused it in my stomach. No procedures like colonoscopies which my GI is very mad about right now as he wants to do one as I have a bad past bad one that was a long time ago but if the polyp wasn’t found in 6 months full blown cancer. I was so healthy he almost didn’t go all the way up but he did and thank God as it saved my life in early 30s. I fall a lot. I can’t bend due to back. I can’t sit, stand, or walk more than just a little bit. Here in Knoxville TN I don’t have anyone helping that is experienced or knows about this disease. I have many doctors that say what’s that. I’m pretty much alone. I have no one to ask questions to. It was Mayo who told me what I know as I was going to go there and approved for their CRPS treatment but it cancelled due to Covid. After seeing this was a pain Center and for many different pain such as even migraines which we have everyday which would have been great. They did PT and classes psychotherapy and pain management but I wouldn’t be able. to sit for 1 hour or 2 hour classes and the aerobics and childcare all 8 hour days. Now it’s been a year or more and I’m very sick and I can’t heal and there’s definitely no way which really no way even then I could’ve done that as the only relief is lying flat. If I stand, sit, or walk after so long it attacks and the longer I ignore the worse it gets until you are in the worst crying not being able to tolerate pain. I’ve had PT here 3 times in the 8 years but no one knew what CRPS was. After back fusion cage didn’t fuse 6 months after I couldn’t move and I had total care where I had to have someone roll me over for bed pan and this lasted for 6 months getting strength back to roll over without excruciating pain and to get up, to walk with a Walker, and then eventually use a bedside portable potty. My back it’s not doing good right now. It’s hating the laying. I can’t sleep. I wish I could take more than a few bites a day. I have hand tremors. My memory and doing certain things I can’t figure out anymore. I’m not complaining as I know God is in control and He’s carrying me. I trust God through all of this. Without God I would not be able to survive as this is like too much for anyone and most doctors say it’s all in your head or they are rude and give up and you loose your support after so many years. You find your person he’s tired and he just wants to do his own thing and play golf and stay gone and doesn’t want to be around cause there’s no cure and he wishes you were the small healthy active beautiful person he was always with from 1982 he dated in high school and I guess you were a model, his trophy wife and now yiu aren’t and he’s not wanting to hear what’s wrong anymore or take you to visits but has to but mad about it but you just know he’s not got a wife to go anywhere with and it happened when I was 47. I did have dark brown hair with caramel highlights and now really white hair with blonde mixed in but he likes brunettes. Now my skin is not doing good on my face either. I don’t eat hardly. I’m little except my stomach is so swollen. It’s so bad no doctor can figure anything out and you can’t have surgeries and I take meds but it’s just comfort meds. No narcotics of course. The stomach meds don’t work. I have it everywhere. I feel like I could write a book. I have stress of course. I’m living in a rental as we are building and I see no one at all except around 8 my husband comes home but goes to bed early. He works 7 days at his shop which is home but at our house we are building. So since October I see no one. My daughter she has had many miscarriages and she almost died and she is married to a narcissist and he keeps cheating on her and if you saw her you wouldn’t believe someone could. She’s gorgeous. She modeled also. She used to have people come up to her in stores and comment on how beautiful she was. She had called and said mom I think I must have took someone’s parking space these two people are chasing me through Kroger’s grocery store and I’m trying to just pick up minimum and get out of here cause I don’t want them to catch up to me. I’m checking out. She calls back and says that was so weird. It was a mom and her teenage daughter wanting to tell me that I was the prettiest girl they ever saw in their whole life on TV or anywhere. She says isn’t that crazy. She was about 19. She was always down to earth, not really confident at all. He destroyed all her confidence. He got rid of all her friends after marriage and he controls her. I tried to tell her while dating and I could recognize as he kept getting caught cheating and he reminded me of my dad who was and still is a narcissist but it took years before my mom could get away. It was awful. I saw him in him. I tried to save her but he twisted it and got her mad at me. We were best friends but we haven’t had the same relationship but he pretends to like me a ton. He worships my husband and my husband was fooled but he was caught in October but he played the what my dad did my whole life which is true and sad and unfortunately he’s his dad. She’s pregnant which is a miracle. They are so happy but he cheated in the worst way and she’s 16 weeks and he’s addicted to porn for 10 years and he slept with a friends wife and she forgave again. I keep crying and crying. I pray for a miracle. I don’t want my moms life to be hers. I am terrified and no one knew as they are charismatic. You don’t know. She’s not going to tell you. He’s not except when caught. Later it can change to violence too if he’s my dad or his dad. I can’t imagine. I can’t quit thinking about it. I can’t say anything csuse she’s so in love and blinded and feels so sorry for him as he cries so hard and this time he’s going for Christian psychology and getting involved in church but was posting things before like he was a good Christian. He lies a lot so you don’t know if he’s real or fake or playing a game. I want to believe but my dad did all this too. I have stress from my own marriage. I have stress from everything going over budget on this house as everything costs double. I was going to get a pool to do therapy. I was going to try to get outside to see the sky. I was so excited. It meant so much but we can’t afford a pool now. There’s no way. This house we are renting it’s got mold in it and it’s making me really sick like cough, sore throat, and congestion, and I have had it since October and it won’t go away and we believe mold but health dept and every place isn’t coming to check. It’s passing the ball back and forth. My Yorkie is sick. I worry as he may not live much longer. He’s old. I have a ton of stress. I don’t have a way to loose it. It’s situational. Sorry for this long text. I wish I had a good doctor though who could at least answer questions, can I have cataract surgery if we know it’s CRPS caused? Can you do anything about your stomach when CRPS is attacking? Could I have cancer in there or kidneys or liver? What’s happening from all the bile leakage? Can anyone answer anything or do tests and what tests are allowed? I just wish I knew who to ask. My primary doctor doesn’t treat CRPS and he did stomach CT and scheduling ultrasound in case gallbladder but I can’t have surgery if it is gallbladder but doubt it is. I don’t eat fat and always had a great diet and healthy lifestyle my whole life. I was a workout enthusiast. If anything I under-ate and I know I’m definitely not eating enough but it’s impossible the way I feel. I don’t know if you respond how to even check.
Please read abaut Low Dose Naltrexone (LDN).I have crps for 6 years on my right hand,3 years on my back spreed after 2 stela ganglion block.After I started taking LDN ther is no more spreed ,and pain is much less.❤
Dara, thank you so much for the recommendation! I take LDN on a daily basis, but I had not heard of it preventing spreading....this is valuable info, THANK YOU!!
I’ve had CRPS for going on 9 years now and I’m seen at a pain block clinic. I don’t know anyone else with CRPS or any type of chronic pain, and I was just wondering if anyone else has had any experience with nerve blocks or radio frequency ablations (RFA’s). I know the RFA’s are considered an experimental treatment where I am, but I’ve been getting them since I was 15 and they’ve helped me so I was wondering if anyone else had heard of this treatment. Anyway, wishing everyone fewer flare ups.
Shell, definitely I know a lot of people get nerve blocks. That was the first treatment I ever tried, but I HAVEN"T heard of RFA's and I am extremely intrigued. I will be looking into this more. I do have a BEMER (bio-electric magnetic energy therapy) and use it daily. It's been the best treatment for me so far.
Can you do a video on what spreading looks like. Types of pain, what it can do. What can it do to the bones and joints What’s the worse case scenario for us. Thanks- Christy:)
😢mine started in right foot from a torn ligament and chipped bone in foot. I've had it for 23 years now. I believe mine had spread from my nerves getting so bad when my son had a close to compound fracture in leg and broken right foot as well. Went to both feet and legs then. I just stay on my gabipenton, mucsle relaxers and pain meds. I'm still trying to work part-time and it's difficult but still trying to push on. Ive also been diagnosed with RA and Fibromyalgia. I seem to be flaring both up past couple of months. I don't know if any of uns has developed allergies to medications? I've noticed over the years I've developed several to different types of medications.
Hi, my CRPS started on myleft wrist after surgery, then spread to all my joints, mirror pain, full body symptoms. Then fibromyalgia settled as well now I have both full body. Rare case....had a lot of trauma/accidents before this surgery and everything is now a flare up potential, no neuroplasticity exercices work. I feel victim to an immune disease....now I am stuck at home managing this. Both wirsts, both ankles, left knee, burning left side of the face....
Hi! Welcome. Sorry to hear about your diagnosis...especially having fibromyalgia and crps together...ugh. Have you tried PEMF therapy? It’s been the most effective treatment for me.
@@TheCRPSNetwork Hi! I have not tried PEMF but will look into it. I am worried I won t be able to tolerate weight on my left legg on my current meds....ive heard of ketamine infusion but delays are huge here in Australia, and there is nothing in north qld at all for neuropathy relief. Medicinal cannabis is really the only thing that helps significantly. I also have growing pain just from sitting down (butt) and anywhere I press my flesh too long so that pain is there even laying down...I wonder how long one can survive like this....im skinny but slowly building back. 0-0 quite happy to fly try anyt new treatment otherwise....stuck at home single forever? and Im a musician/farmer originally....anyway. I feel like I could only live with someone who also has a full body neuropathy. Meditation is a blessing in life, at least this is positive. Peace
I can’t go on - I can’t - each time I tell my dr he takes more Meds aways- now I’m in full scale flair - I can’t do this life anymore. I can’t - but I somehow do- Yesterday I was admitted to Hospital for pain , my blood pressure and heart rate were at a dangerous level. Ketamine and sent home to cry alone- My face is tear stained and my soul is tired . Lidocaine, gabbapantin, steroids, MS Contin and Effexor-- What more can I do?
Tia, since CRPS was declared a rare disease a few years ago, it allows pharm co's to get funding to find a cure or better treatments. There are so many things in the works right now...so stay hopeful!
I'm so sorry you've been through so much. Write me back before u give up. I'd like to talk about what you've tried and medications. I've had RSD for 11 years. 2019 Jen
Tia Snoozy find support groups. There are TONS online. I just joined one yesterday and have already been flooded with positivity and support for my daughter. Secondly find someone you can talk to. Whether it’s a therapist (some places offer free therapy if you’re willing to help a college student who needs clinical hours everyone has to start somewhere 🙃) or someone whose going through what you’re going through. They’re out there and will be your rock on bad flare days. Get a referral to a doctor that specializes in pain management. I hope you have better days. Don’t give up. Be the squeaky wheel that gets the grease when it comes to your health care. ❤️
@@tracyparton1296 --- Yes this is known to have good results!! Of course we have to keep in mind not for everyone☹️ The bad part is that this treatment is NOT COVERED BY ANY INSURANCE!! IT'S ALL OUT OF POCKET 😥🤮☹️ SO IF WE CAN'T AFFORD IT DOESN'T MATTER HOW GOOD IT IS😰😥🤧
I have battled regional pain syndrome for the lady 34 years by lateraled in my legs and right arm, I’ve dun every treatment on earth, mine gets so bad I develop second degree burns, I pray every time it goes in remission it will be the last, but that just hasn’t worked out, it sucks
Are the burns ever on your face? Whenever I have a bad flare, my face becomes extremely red with a butterfly type rash (I was diagnosed, then undiagnosed, with Lyme, negative for lupus) and burn so, so badly to the point where it can blister. I have photographic evidence and it still isn’t something my doctors take into account. I’m sorry if this is personal, but can you go a bit more into what you mean? Thank youuu. I’ll be praying for you
Thank you for your informative videos. I was diagnosed with crps and allodynia after I fractured my ankle a little over a year ago. Pain medication does not work for me. So I had a DRG stimulator implanted a month ago. Now it feels like I have crps and allodynia around the incision areas in my lower back/buttock. I wish my doctor had told me this could happen. I have to keep my clothes away from the areas. Now I can’t even leave the house except for doctor appointment. Any suggestions to help me?
Kristin Peterman There is Tons of Groups on Facebook, that Can Help or Give you any ideas or Suggestions. Plus its a Great way to meet other & make new Friends that are going through the same Nightmare as you!!
The CRPS Network, thank you. What kind of doctor should I be looking for? I’ve been seeing a spine and pain specialist. They said they can’t help me with my pain anymore. That they have no more options for them to try.
@@toonces7166 Hi, I'm not with CRPS Network. But I've Had this Nightmare since 1997. So you went to a Spine & Pain Specialist, so did you see Pain Management Yet? Sometimes just from knowledge of dealing with the same thing and I've had Doctors do this in the past to me as well, I used to just let them get away with treating me like that, then I finally figured out their my Doctor, they Work for Me, I pay them, My Insurance Pays them. So No your Not just going to give up on me, You as my Doctor Need to Find something that will work for me and Not Brush me off. Next day I got a Phone call they had me come in and discuss having the Pain Pump implanted, this Helps So Much with the Pain, I also have a SCS Spinal Cord Stim. in my left buttocks/ waist for my intial injury down Left Leg. But Don't you even think there's Nothing else, Because there is All kinds of things they can try and see if they work for you. But don't let the Doctors Brush you Off, I just tell "Well you better find something because I'm Not going anywhere and since your my Doctor and supposed to be Helping me, but you choose not. I'm sure someone Higher than you would like to know what your telling your patients". For some reason, this worked and he started working with me. I hope any of this may Help you, Please keep me Updated on how your doing, Please? Thanks!!
(American Sign Language): I have CRPS type 2. It spreading from my toe on left foot to ankle now. I wanna cut my toe off when the pain is too much sometimes.
Please talk to people. It can really help! But I suggest you talk to someone who has it. I've had RSD/CRPS for 40+ years. There were so many hospitalizations. I've been out for six months now. Things can get really bad, but my doctors really help. If the pain gets so bad and I start having problems with emesis and blood pressure they have given me heart Meds, nausea, tranquilizers, etc to add to my regular meds to take at home. It either works or we're off to the ER. Just don't give up. You'll meet some great people! I'll talk with you, just let me know. I'm in a bed 24/7, you just let me know. I'm usually pretty shy... but I'll fight for someone in need. ❤🙏
After being injured and ended up with crps a year later I went to get braces because I knew nothing about it and I suffer with my head and face along with spraining my ankle all of my right side is compromised now
Keisha, oh no...I'm so sorry! I've heard the face and head are the worst possible area to get it. Thank you for sharing about the braces causing issues because I actually had considered something similar (like invisalign). I am always so worried about spreading anytime I need to have any dental work done. With CRPS, our teeth can be a real challenge. I have found an oral surgeon who understands CPRS and has agreed to use ketamine on me anytime I have any oral surgery. Have you been able to find anything to use to help with the pain? How about ketamine troches (under the tongue)? Is it painful to chew/eat?
@@TheCRPSNetwork I only get ganglion steroid injections in my neck but I’m also taking gralise. Is your gums hurt your eye hurts head everything the burning your scalp burns so doing your hair is a bit much. It sucks having sinus issues on top of this
@@TheCRPSNetwork some how I managed to get lucky with it being on one side of my head and I’m not able to chew on that side due to the way my teeth are with the shifting but I probably wouldn’t be able to chew on that side anyway
I have CRPS I feel like I'm literally going "Crazy"!! It's hard for Me to explain to Dr 's that CRPS "Spreading throughout my Body"! I don't know if anyone can relate???? Bumps & reddish pimples started to appear after a painful swelling or just come out of Nowhere?!?!? It "Sucks" because Vitamin C is not working medicine works for a shorter period. Can Anyone relate to these symptoms???? They are more symptoms but these are the Newest Ones that started.
Can the CRPS spread because of an extremely painful nerve conduction test? I had a crush foot injury 2 years ago, I haven't been diagnosed as my symptoms were not complete, but ever since this test my entire body has been burning at night.. no visible changes though.. I cannot sleep and I feel exhausted :(
Hanna, that's a great question. Although there is not any medical proof or studies (that I am aware of), I have heard of several people reporting that they believe they experienced spreading as a result of an EMG test.
Those nerve conduction tests are horrid. It's like a torture chamber abuse. I went through one that was an hour long. He made me cry. Then when I finally saw a neurologist he said he had to test himself because the hour long one wasn't good enough. So then this Neurologist Dr did a second test, luckily it was just 15 minutes long. He said he found nothing. But the Dr that did the hour long test said he saw something. Anyway no one warned me of how much pain those tests cause. And then neither Dr did anything about my pain.
I have CRPS in my right leg. I also have had that leg amputated. It has been spreading to my right side of my body. I get twitches in my hand and CRPS pain in a lot of my body.
Hi Vicki, Did your CRPS start after the amputation, or was the amputation due to the problems with the CRPS? I'm so sorry it's misbehaving. I'm having problems with it spreading too. I'll keep you in my prayers ❤.
@@nitaonstad9965 The amputation was because of the CRPS and the fact that there was nothing else that could be done with my ankle. We were hoping that the CRPS would end as at that time it was just in my foot and ankle. 3 days after my amputation, I started getting issues with my stump and leg. The CRPS had moved into it. I am now in pretty much full body on top of having Fibromyalgia,
I’ve just had to have some biopsies after finding a lump in my right breast. They injected some Titanium clips into both breasts and they left them in, it took five hours.The left side is OK but there’s a shadow on my right side so I’ve got to go back and have all the tests done again next Friday. I’m still in pain from the first biopsies and it never occurred to me to my that it might be from the needle pokes.
I have CRPS in my right foot(ankle) for 6 months, 1 month ago the doctors gave me a lumbar injection of lidocaine for pain, with this injection the CRPS can be spread? And may 07, 2019 I Will have the other appoinment for the same injection, I am really worried. I'm living in New York and the doctors do not know about CRPS, I take pills Gabapentin. I don't have insurance and Money for travel a other state, I recieve treatment with other doctors 😭
Alicia, Don't worry too much....although needle pokes can be a risk for spreading, it doesn't mean it will everytime. I have had many needle pokes with no spreading. Especially if you are getting a lidocane injection because the area will be numb instantly after the needle is injected. CRPS remembers pain, but if you don't continue to experience pain (because the lidocane has taken effect) then you are much less likely to have lasting pain there. Living in New York, I know you said you can't go out of state, but if there's anyway you could go to New Jersey, you have one of the country's most knowledgeable doctors there, Dr. Philip Getson. If you need someone to talk to, feel free to email me you phone number. My email is in the description.
I been dealing with RSD/CRPS for 10 years on my right lower leg. I cut the tip of my finger and now have a small scar that is sensitive but the pain did not spread. Things that i do at home to control my pain is using Capsaicin Cream 1% , Ice , hot/heat patches, Avoiding dairy products ( going vegan) and things that cause inflammation. I do listen to music to relieve some stress.I have minimal physical activity due to my leg. I do walk a few feet a day depending how i feel and how much pain i can take. No physical therapy has not help still the same. I do take medications when i really need them this includes naproxen for inflammation also CBD. I used to take Gabapentin but it gave me arthritis on my right index finger. I had nerve block injections that help but after the third one my body got used to the drug and it did not last long so i stop. It is best to avoid hard medication if you can tolerate some pain because they destroy your body. Pain is worst at night because when in bed your muscles relax and release lactic acid causing more inflammation. I wish more videos would talk about diet when speaking about pain management.Hope someone finds this helpful and enjoy life much as you can.
That’s great Jon! I hear a lot about diet playing a big part with crps pain. I’ve notice differences myself. That’s great you’ve got vegan. I do have a video on the most inflammatory and anti inflammatory foods. Sounds like you’ve found ways to keep it in check, especially for 10 years having it. My 10-year pain-anniversary is coming up 3/2/23
I'm so sorry. It is so horrible. I have it in my right hand. I wanted to die before I started taking a large dosage of gabapentin. Now it's bearable...still miserable but I don't want to die. I wish I could help you.
My husband was stung by a red wasp 3 times on his good leg. Days after his toes on that foot started changing colors and hurting horribly. He hasn’t went to Dr. yet because he will just hear same bull crap.
The cold is rough on us for sure! I think everyone with CRPS should automatically get to move to a tropical island somewhere where it's sunny and warm everyday ;-)
I have crps it's been 2 years I'm in treatment and I take medication and my crps still spread I have full body crps, even with treatment and medication crps still can spread.
I have crps an I'm a bbque I'm on 🔥 I'm in hospital now as my heart flipped 180beats per min an crps so painfull u could smell I was feeling crazy all u see on sites an hear all true
Ron, there are things that can help. Sometimes it's a matter of finding which treatment works or a combination of treatments. Also they are coming up with new treatments all the time. I have a video coming up soon on a new treatment discovered just a few month ago that looks promising.
Alicia, I have a video about EMG test for CRPS. They are incredibly painful and can cause the CRPS to spread. They do not do anything to diagnose CRPS. They can determine if you have other nerve related issues. Check out the video I did on this before you go. If I had to do over again, I would have refused this test!
CRPS don’t spread it grows in abundance by the amount of chemicals in your food supply that you were ingesting in the morning and just the more the problem happens I had CRPS non-diabetic neuropathy celiac disease I have these things now I don’t
I got burn at a restaurant with hot spaghetti over heat in 2018 and at Children’s Hospital Los Angeles. They diagnosed me with CRPS and they told me that it’s spread so I had it on my ankle now I got it on my leg, my knee, my thighs on my hip, my back, my shoulder, my neck and my ear all the left side so now I have to do and I can’t even walk. I can’t do anything so Children’s Hospital Los Angeles wants to do rehab leave me they’re so impatient for 2 to 3 months to do a physical therapy and get a surgery done for that but I have nerve damage so that’s what caused CRPS to
Hi. Great information. I did have needle poke spread. If I may make a suggestion can you please not play music in the background as your talking. For me, noise and sound never bothered me for the last 12 years . However now I understand why people have said sounds and noise can be difficult with this illness. Thanks so much
With you needle poke spread, does it only affect the area that was poked? Or the entire limb?
I was poked by several needles for infusions prior to getting a port, and now feel like I'm being poked in the same spot all the time. It doesn't affect my whole limb. However I was poked by a rose bush thorn in my thumb knuckle. It blew up huge and now my entire right arm/shoulder is affected.
Thank you for the feedback :-)
@@TheCRPSNetwork hi, Yes it's more I'm my hand and its HORRIBLE. My hand felt like it was on fire when I came home from the hospital. Luckily it eased up but on the whole hand left me with 2 fingers numb tingly. It's hard though cuz I NEVER had a problem with that hand or arm.. SHHHH. arm is not crazy painful. (I do not want it to hear me) . The hand swells also so. Yeppers . Ugh. Unfortunately my drs are not well versed in CRPS. I tried to tell them... I should have gotten a port. Can u tell me how that works. ? I haven't been lucky to get infusions yet but that WILL BE NEXT.. thanks
@@girlwhosbeenthroughalot4997 good luck to you and be gentle with the other side not affected praying so it doesn t spread to all your joints. In my experience even injury sites that are over 5 years old can be spreaders.
I have never liked background music and it has nothing to do with my CRPS. The reason is that I am a classical music lover and my attention is divided between wanting to listen to the music or to the voice. It's even more stressful if it's popular music!
I went 3 years with no diagnosis or treatment. It started in my left foot and spread to both my legs and to above my hips. It was horrifying to feel this pain slowly crawl it's way up my body, and there was nothing I could do because no one believed my pain
Took a year to get diagnosed and it’s now spread everywhere.
I don’t know how anyone with CRPS can ignore it! I was suicidal with pain! I finally was diagnosed 8 months after a terrible wrist injury and surgery in which the surgeon told me I was being dramatic and cut off my pain medicine. I went to the University of Washington medical center in Seattle Wa and as soon as that orthopedic surgeon looked at my wrist he told me I had CRPS. I’ve had a nerve block and now treated with the appropriate meds so I can function much better and get through physical therapy. Thank you for the video as I’m still researching ways to control my CRPS. Best of luck to you all. 💕
i have the same type of story . the whole thing basically but i'm at the point where i'm going to get a shot of cortisone in my neck i belive for my arm and hand
ace b I wish you the best of luck! The nerve block I had done really helped the nerve pain (my hand felt like it was on fire), that was in April of 2017 and I’m doing better but still continue to suffer from CRPS.
@@staceyshaffer180 was it the cortisone shot ? And after I have to do pt which is ok but after the shot wears out I heard I would be in tremendous pain?
ace b hi ace, I had a Sympathetic nerve block. They injected through my neck and the procedure took about 10 minutes. I felt immediate relief! It reduced the nerve pain about 75% for a good eight months. It was the best pain relief I’ve had. I believe you can only do one a year and I’m going to get another in July. I also started a probiotic diet and I think that has helped. I wish you the best.
I don’t know why there is no discussion about bisphosphonate infusions. They work. I know of at least 5 other sufferers and my wife that have had marked improvement with Neridronate infusions in Italy.
Pamidronate that is available here in the US helped my wife get off the Gabapentin. We had Neridronate in Italy last year and are going back for one more round this week to try and tip her into full remission. This is a close to a cure that we can get. Please investigate it.
I have crps 2 since 1985 by fallen on mine hand and i was 13 years old. Now i am 51 and it spread to my hipes. Thanks for the intwrview/video
I was initially diagnosed with RSD/CRPS in my right knee of which spread to my entire right leg. I then had GBS and later diagnosed with CIDP. With exacerbations of the CIDP the RSD/CRPS spread further up my spine eventually spreading to my arms and even my face. I have since had a port placed (March of 2018) and receive monthly infusions of IVIG which not just seems to keep the CIDP in check but also the RSD/CRPS from getting worse. You are entirely on point with stress making the pain worse. Luckily repeated IV sticks didn't seem to bother the CRPS but it definitely didn't help with the pain. Last year I started vaping CBD and that has also seems to help with the pain but quite recently I was placed on methadone of which brings the pain from a almost constant 7 down to a 2. The CBD quite often will bring the pain down to a 0 so that definitely helps matters.
Leslie, thank you for sharing! That is awesome that you get IVIG! I did another video about it recently. A good friend of mine who was an ER nurse, with CRPS, she gets IVIG too and swears by it. For sure mmj helps me too (with CBD).
praying for you...I also have full body and face burns.....fibro + CRPS
I read your msg regarding your CRPS Spreading! The right side of my mouth & ting swelled up that I felt my neck almost exploding of Pure Pain! Did you feel like that? What did you do?
I have it in two limbs on my right side now. Right ankle and arm/wrist now… due to a new injury, and it worst in the wrist, then it is in the ankle, it sucks but I have a great team helping me take natural approaches in managing it. ❤❤❤
You have taught me to understand my body with CRPS . Thank you
Hi I have RSD. CRPS. GOING ON NOW OVER 20 years it is not fun. Neuro and Biofedbac does help. Just take it slow with what you do and you can control the pain trust me then life goes on. 👌👍😃
It is not only the pain which debilitates us but the sense of fatigue that affects the whole body. Pain may originate in only one spot - for me, along the pinkie finger, the ulnar nerve - but that one, small spot causes me to lose energy and makes me want to be in bed most of the time (I am retired so my time is my own).
I have had my CRPS spreading from one leg to the other in just months...I would not wish this pain on anyone! And doctors seem to not understand how to treat it aside from giving me meds on top of meds, it took them almost a year to diagnose me. I'm considering treatment elsewhere since the US seems to not have the means for it...found this clinic in Italy and their doctors seem very knowledgeable, they say they have treated patients for more than 9 years. I have hope this might be it for me.
So sorry for the pain you experience. I have it too so I understand. Please write back and say what you found in Europe, especially Italy, that you mentioned. Europe always has a head of the US when it comes to medicine. I wish you the best and look forward to hearing from you again.
@@irmichaels1955 I found this clinic in Italy, apparently they have a treatment that was patented specifically for Crps. I found them on facebook through one of the groups, it's called Neridronate treatment, I'm currently talking to one of their patient coordinators and they have been very kind in answering all of my questions...! I'm thinking of doing the evaluation with them to see if I'm an eligible candidate for the treatment. I looked at their website and read all about their success stories and it is really giving me a lot of hope! I can give you their website info if you would like.
I have had RSD/CRPS for 44 years. Started in my right ankle, foot due to a brown recluse spider bite. Is this treatment Ketamine infusions? Please, if you decide to go, will you keep us informed. Mine has spread so much.
Brilliant
Thank you
Sending blessings Love and Respect
💜🙏🕉x
I suffer from crps & trigeminal neuralgia on my face and my jaw. It is the worst, most miserable excruciatingly relentless kind of pain. Does anyone else have it in their face or jaw? I've had this since 2002 & i'd do anything for a cure! Hopefully one day they will find a cure.
I;m so sorry...you unfortunately have like 2 of the most painful conditions. I actually have 2 good friends who have both trigeminal neuralgia and CRPS. I feel like there must be a link between the two.
Spero clinic
@@TheCRPSNetwork I'm sorry to hear about your friends. Both my trigeminal neuralgia and crps were both caused by trauma from bilateral total joint replacement surgery of my tmj joints. They both are truly brutal brutal painful conditions that can literally suck your entire life out of you!
I was at a clinic that used The Scramble machine. One of their patients had trigeminal neuralgia and that therapy helped that person. Worth a try. Or in the alternative health world, ozone treatments can do wonders.
@@creativegirl9710 Thank you so much for passing this Info on to me. I will definitely look into it and see if it is something that could benefit me. I'm willing to do just about anything at this point. Thank you so much again!
Mine spread to my liver…it keeps inflaming it causing the enzymes to release adding pain…the hospital has become my bff
I was able to get through the pain by overloading my senses to make my brain pay attention to what I was focusing on. Sight, touch, smell, sound taste… pain is gone instantly. It works when you have nerve pain.
Thank you for sharing. Could you elaborate please?
Use ketamine for everything you do that is surgically or maybe other things too
I went through a very painful emg it was definitely worse and slightly larger area after, but I was told it was my imagination. I have a better doctor now
That’s terrible. I try to urge people not to do the EMG. I did the test too, It was very early in my diagnosis when I didn’t know any better. It was the most painful thing I’ve experienced and I believe it caused spreading for me as well.
There’s a video on this channel about the EMG. You should leave a comment there too, so anyone considering it, that comes across that video can see what happened in your situation. Thanks for sharing!
@TheCRPSNetwork thank you. I will look for it.
I was recently diagnosed with Fibromyalgia, small fiber neuropathy & CRPS.
It's been a very bumpy ride getting here. I haven't been given treatment plan yet. I've changed my diet, no sugar & low carbs. Taking vitamin supplements and going to PT twice weekly. I see my pain doctors in three weeks until then anything you recommend? Enjoy your informative videos.
Yes, I have another video about holistic treatments for CRPS, there maybe some things that you can do from that video that could help. Vitamin C is the most important. Don't immobilize your affected limb....keep it moving, but don't overdo it. Don't ice your limb.
Make sure to seek help from a specialist that has experience with CRPS and understands the most current treatments for it. Sometimes this requires traveling. Same with any physical therapist. Good luck and keep us posted!
Limit Opioids they're super helpful when your lifes hell but dependency causes Central Sensitization, cold makes mine worse. CBD/THC help me CBD is much less psychoactive and refined " CBD Isolate" is %100 CBD no THC. Kratom and Kava depending on local laws and herbs like lavender California poppy so on. Don't get on a ton of prescription meds your Kidney and Liver need to be thought of alot of Foods/Pharmaceuticals/Plants can interact in your liver Badly/Fatally. Ketamine is a God Send although it may not fix your CRPS it may provide temporary relief Ketamine Nasal Spray is a good rescue medicine that's not an opioid. Benzos can sometimes be amazing but seriously be careful not to become dependent CRPS+Withdrawal/dependence is a recipe for disaster it sensitizes every nerve. Compounding pharmacies can do ER Ketamine/DXM capsules NMDA receptor antagonists/dissociatives are what helps me most but you can't take them forever and tolerance is an issue
Spero clinic
cut the articifial foods you cannot pronounce they make symptoms worst in my exprience...
❤🙏 You'll find some peace and comfort here!
Music in the background is distracting
Any music is unnecessary. It’s even worse when the quality is so bad!
Great video! Even with having CRPS for at least 10 years, I've not had it spread. I've had numerous needles and surgeries with no problem. I've even asked my doctor if I've been misdiagnosed. He said no, I've just been fortunate in that area. However, I'm facing surgery in my opposite ankle (crps is in my left ankle). He's concerned it'll spread to my right ankle since crps tends to go bilateral. Do you know if it's really a higher risk? Thanks so much! Love your videos!
Pat, Thank you so much!!
Wow, that's great about not having any spreading this long!!!
Yes, going from one limb to the opposite limb is the most common direction it spreads. After that, going on the same side (left ankle to left arm) is most common and a diagonal spread is the least common.
Someone else just asked about information concerning spreading with future surgeries, which has prompted me to make a video about the topic. I will post in a couple of weeks. Here is some information about it in the meantime: anesthesiology.pubs.asahq.org/article.aspx?articleid=1942048
My left foot sometimes randomly Mirrors my Right foot pain it's crazy and my elbow if I rest it on a long car trip it can flare
My luck ran out. I had surgery in my right ankle in January. Within a week the electrical shock pains started. I was officially diagnosed last month and am awaiting a nerve block. I got my answer the hard way.... yes, there's an increased chance for a bilateral spread. :(
I'm gay but in a Gerard Way my daughter 9 was diagnosed this past spring. I know you may not feel “normal” any longer, but it’s a new normal you just have to get used to. She has it in her right foot, and sometimes it flares in her right arm. Right now after falling on the skateboard she thinks she may have it in her left wrist. If you ever want to talk to her, to have a kid that understands what you’re going through, she’d be more than happy to. You’re not alone and you can have all the support you need. It’s a disease that no one should go through, especially alone.
@@nateone6632 same, does it for wrists too. Had ankle fracture and now both ankles are affected by CRPs and fibro...30 minuts walks and im struggling to walk :/ if I use my good hand (right hand) it also ends up in flare just like the left one.....no idea what life will entail now...
Physical therapy made it spread for me and just time make it spread
Yikes! That's unfortunate about the physical therapy leading to spreading. Do you think the physical activity was just too much strain or an unexperienced PT?
The CRPS Network I had a pretty good pt I was put in aqua therapy 3 months later it went to my arm and other legs i would only do like half hour a day but sometimes PT isn’t for everyone tho but I still walk around though
Physical therapists usually aren't equipt for CRPS sadly they definitely had me doing things I shouldn't
@@TheCRPSNetwork I had CRPS since 2018. I had shoulder surgery, had 2 nerve blocks before the surgery. Now it has spread to my stomach legs, right arm, right hand, my lower back. I can hardly use my hand, it gets numb, burns, hot, deep ache , turns purple, red, pins and needles.
Me too!
Mine spread by EGD and it’s in stomach and it’s like I have a stomach virus everyday for over 2 years. I got CRPS after a frontal back surgery doing a fusion placing a cage removing stomach for neurosurgeon to get to back with no pain meds as it causes severe uncontrollable vomiting and surgery prior I was placed back to sleep as they can’t stop my vomiting. This surgery was too much trauma with only Tylenol for my body. The surgery didn’t fuse after 6 months either and a different neurosurgeon best in country said never let anyone touch my back and I can only pray for a miracle. So I have two issues but CRPS was just in both legs from thighs down to toes and yes you want your legs cut off. Your bowels and bladder immediately stopped working. Your stomach swelled like your 5 months pregnant and never will go down. I was an avid exerciser and 111 and now 160 and my stomach has no lining, bloody mess, extreme swollen, hiatal hernia, extreme IBS, atrierial papilla, and ulcers, and I am leaking bile for 2 years now out my nose but Famotidinr helps with that and always with bowels. I now am suffering with awful pain in stomach and kidney area and no one can figure it out and the nausea has gotten even more severe that I can’t eat and if I eat even anti inflammatory diet when food touches stomach I feel horrible pains, sweating, severe nausea. I just live on Zofran and they can’t find the cause but the CRPS is causing havock inside my stomach. I got it in my face. It was awful pain that lasted hours on end of teeth, jaw, face, eyes, head, nose pain and I wanted my husband to kill me, take me in the middle of Covid and beg for me to be put in a coma. My teeth are coming out. I have something wrong I guess a gum disease. My eyes already were getting bad and now really bad and barely can see. They need cataract surgery but I was told no surgeries. I was told that EGD caused it in my stomach. No procedures like colonoscopies which my GI is very mad about right now as he wants to do one as I have a bad past bad one that was a long time ago but if the polyp wasn’t found in 6 months full blown cancer. I was so healthy he almost didn’t go all the way up but he did and thank God as it saved my life in early 30s. I fall a lot. I can’t bend due to back. I can’t sit, stand, or walk more than just a little bit. Here in Knoxville TN I don’t have anyone helping that is experienced or knows about this disease. I have many doctors that say what’s that. I’m pretty much alone. I have no one to ask questions to. It was Mayo who told me what I know as I was going to go there and approved for their CRPS treatment but it cancelled due to Covid. After seeing this was a pain Center and for many different pain such as even migraines which we have everyday which would have been great. They did PT and classes psychotherapy and pain management but I wouldn’t be able. to sit for 1 hour or 2 hour classes and the aerobics and childcare all 8 hour days. Now it’s been a year or more and I’m very sick and I can’t heal and there’s definitely no way which really no way even then I could’ve done that as the only relief is lying flat. If I stand, sit, or walk after so long it attacks and the longer I ignore the worse it gets until you are in the worst crying not being able to tolerate pain. I’ve had PT here 3 times in the 8 years but no one knew what CRPS was. After back fusion cage didn’t fuse 6 months after I couldn’t move and I had total care where I had to have someone roll me over for bed pan and this lasted for 6 months getting strength back to roll over without excruciating pain and to get up, to walk with a Walker, and then eventually use a bedside portable potty. My back it’s not doing good right now. It’s hating the laying. I can’t sleep. I wish I could take more than a few bites a day. I have hand tremors. My memory and doing certain things I can’t figure out anymore. I’m not complaining as I know God is in control and He’s carrying me. I trust God through all of this. Without God I would not be able to survive as this is like too much for anyone and most doctors say it’s all in your head or they are rude and give up and you loose your support after so many years. You find your person he’s tired and he just wants to do his own thing and play golf and stay gone and doesn’t want to be around cause there’s no cure and he wishes you were the small healthy active beautiful person he was always with from 1982 he dated in high school and I guess you were a model, his trophy wife and now yiu aren’t and he’s not wanting to hear what’s wrong anymore or take you to visits but has to but mad about it but you just know he’s not got a wife to go anywhere with and it happened when I was 47. I did have dark brown hair with caramel highlights and now really white hair with blonde mixed in but he likes brunettes. Now my skin is not doing good on my face either. I don’t eat hardly. I’m little except my stomach is so swollen. It’s so bad no doctor can figure anything out and you can’t have surgeries and I take meds but it’s just comfort meds. No narcotics of course. The stomach meds don’t work. I have it everywhere. I feel like I could write a book. I have stress of course. I’m living in a rental as we are building and I see no one at all except around 8 my husband comes home but goes to bed early. He works 7 days at his shop which is home but at our house we are building. So since October I see no one. My daughter she has had many miscarriages and she almost died and she is married to a narcissist and he keeps cheating on her and if you saw her you wouldn’t believe someone could. She’s gorgeous. She modeled also. She used to have people come up to her in stores and comment on how beautiful she was. She had called and said mom I think I must have took someone’s parking space these two people are chasing me through Kroger’s grocery store and I’m trying to just pick up minimum and get out of here cause I don’t want them to catch up to me. I’m checking out. She calls back and says that was so weird. It was a mom and her teenage daughter wanting to tell me that I was the prettiest girl they ever saw in their whole life on TV or anywhere. She says isn’t that crazy. She was about 19. She was always down to earth, not really confident at all. He destroyed all her confidence. He got rid of all her friends after marriage and he controls her. I tried to tell her while dating and I could recognize as he kept getting caught cheating and he reminded me of my dad who was and still is a narcissist but it took years before my mom could get away. It was awful. I saw him in him. I tried to save her but he twisted it and got her mad at me. We were best friends but we haven’t had the same relationship but he pretends to like me a ton. He worships my husband and my husband was fooled but he was caught in October but he played the what my dad did my whole life which is true and sad and unfortunately he’s his dad. She’s pregnant which is a miracle. They are so happy but he cheated in the worst way and she’s 16 weeks and he’s addicted to porn for 10 years and he slept with a friends wife and she forgave again. I keep crying and crying. I pray for a miracle. I don’t want my moms life to be hers. I am terrified and no one knew as they are charismatic. You don’t know. She’s not going to tell you. He’s not except when caught. Later it can change to violence too if he’s my dad or his dad. I can’t imagine. I can’t quit thinking about it. I can’t say anything csuse she’s so in love and blinded and feels so sorry for him as he cries so hard and this time he’s going for Christian psychology and getting involved in church but was posting things before like he was a good Christian. He lies a lot so you don’t know if he’s real or fake or playing a game. I want to believe but my dad did all this too. I have stress from my own marriage. I have stress from everything going over budget on this house as everything costs double. I was going to get a pool to do therapy. I was going to try to get outside to see the sky. I was so excited. It meant so much but we can’t afford a pool now. There’s no way. This house we are renting it’s got mold in it and it’s making me really sick like cough, sore throat, and congestion, and I have had it since October and it won’t go away and we believe mold but health dept and every place isn’t coming to check. It’s passing the ball back and forth. My Yorkie is sick. I worry as he may not live much longer. He’s old. I have a ton of stress. I don’t have a way to loose it. It’s situational. Sorry for this long text. I wish I had a good doctor though who could at least answer questions, can I have cataract surgery if we know it’s CRPS caused? Can you do anything about your stomach when CRPS is attacking? Could I have cancer in there or kidneys or liver? What’s happening from all the bile leakage? Can anyone answer anything or do tests and what tests are allowed? I just wish I knew who to ask. My primary doctor doesn’t treat CRPS and he did stomach CT and scheduling ultrasound in case gallbladder but I can’t have surgery if it is gallbladder but doubt it is. I don’t eat fat and always had a great diet and healthy lifestyle my whole life. I was a workout enthusiast. If anything I under-ate and I know I’m definitely not eating enough but it’s impossible the way I feel. I don’t know if you respond how to even check.
Why are you getting infusions and are the Ketamine?
Please read abaut Low Dose Naltrexone (LDN).I have crps for 6 years on my right hand,3 years on my back spreed after 2 stela ganglion block.After I started taking LDN ther is no more spreed ,and pain is much less.❤
Dara, thank you so much for the recommendation! I take LDN on a daily basis, but I had not heard of it preventing spreading....this is valuable info, THANK YOU!!
The CRPS Network No problem.❤️
@@TheCRPSNetworkI'm learning so much on your page! Thank you! ❤
I’ve had CRPS for going on 9 years now and I’m seen at a pain block clinic. I don’t know anyone else with CRPS or any type of chronic pain, and I was just wondering if anyone else has had any experience with nerve blocks or radio frequency ablations (RFA’s). I know the RFA’s are considered an experimental treatment where I am, but I’ve been getting them since I was 15 and they’ve helped me so I was wondering if anyone else had heard of this treatment. Anyway, wishing everyone fewer flare ups.
Shell, definitely I know a lot of people get nerve blocks. That was the first treatment I ever tried, but I HAVEN"T heard of RFA's and I am extremely intrigued. I will be looking into this more.
I do have a BEMER (bio-electric magnetic energy therapy) and use it daily. It's been the best treatment for me so far.
Spero clinic
Can you do a video on what spreading looks like. Types of pain, what it can do. What can it do to the bones and joints What’s the worse case scenario for us. Thanks- Christy:)
Sure! I'll add it to my list of video ideas...thank you ;-)
I'm looking forward to this video cuz its spread vhf to all 4 if my limbs bad!
Thanks for sharing
😢mine started in right foot from a torn ligament and chipped bone in foot. I've had it for 23 years now. I believe mine had spread from my nerves getting so bad when my son had a close to compound fracture in leg and broken right foot as well. Went to both feet and legs then. I just stay on my gabipenton, mucsle relaxers and pain meds. I'm still trying to work part-time and it's difficult but still trying to push on. Ive also been diagnosed with RA and Fibromyalgia. I seem to be flaring both up past couple of months. I don't know if any of uns has developed allergies to medications? I've noticed over the years I've developed several to different types of medications.
I have it everywhere because drs don’t know how to treat me. Still struggling to find a dr who cares enough.
Hi, my CRPS started on myleft wrist after surgery, then spread to all my joints, mirror pain, full body symptoms. Then fibromyalgia settled as well now I have both full body. Rare case....had a lot of trauma/accidents before this surgery and everything is now a flare up potential, no neuroplasticity exercices work. I feel victim to an immune disease....now I am stuck at home managing this. Both wirsts, both ankles, left knee, burning left side of the face....
Hi! Welcome. Sorry to hear about your diagnosis...especially having fibromyalgia and crps together...ugh. Have you tried PEMF therapy? It’s been the most effective treatment for me.
@@TheCRPSNetwork Hi! I have not tried PEMF but will look into it. I am worried I won t be able to tolerate weight on my left legg on my current meds....ive heard of ketamine infusion but delays are huge here in Australia, and there is nothing in north qld at all for neuropathy relief. Medicinal cannabis is really the only thing that helps significantly. I also have growing pain just from sitting down (butt) and anywhere I press my flesh too long so that pain is there even laying down...I wonder how long one can survive like this....im skinny but slowly building back. 0-0 quite happy to fly try anyt new treatment otherwise....stuck at home single forever? and Im a musician/farmer originally....anyway. I feel like I could only live with someone who also has a full body neuropathy. Meditation is a blessing in life, at least this is positive. Peace
how can you even treat it?
I can’t go on - I can’t - each time I tell my dr he takes more
Meds aways- now I’m in full scale flair - I can’t do this life anymore. I can’t - but I somehow do- Yesterday I was admitted to Hospital for pain , my blood pressure and heart rate were at a dangerous level. Ketamine and sent home to cry alone- My face is tear stained and my soul is tired . Lidocaine, gabbapantin, steroids, MS Contin and Effexor-- What more can I do?
Tia, since CRPS was declared a rare disease a few years ago, it allows pharm co's to get funding to find a cure or better treatments. There are so many things in the works right now...so stay hopeful!
I'm so sorry you've been through so much. Write me back before u give up. I'd like to talk about what you've tried and medications. I've had RSD for 11 years. 2019 Jen
What about Scrambler therapy... heard they have good results with crps
Tia Snoozy find support groups. There are TONS online. I just joined one yesterday and have already been flooded with positivity and support for my daughter. Secondly find someone you can talk to. Whether it’s a therapist (some places offer free therapy if you’re willing to help a college student who needs clinical hours everyone has to start somewhere 🙃) or someone whose going through what you’re going through. They’re out there and will be your rock on bad flare days.
Get a referral to a doctor that specializes in pain management.
I hope you have better days.
Don’t give up. Be the squeaky wheel that gets the grease when it comes to your health care. ❤️
@@tracyparton1296 --- Yes this is known to have good results!! Of course we have to keep in mind not for everyone☹️ The bad part is that this treatment is NOT COVERED BY ANY INSURANCE!! IT'S ALL OUT OF POCKET 😥🤮☹️ SO IF WE CAN'T AFFORD IT DOESN'T MATTER HOW GOOD IT IS😰😥🤧
I have battled regional pain syndrome for the lady 34 years by lateraled in my legs and right arm, I’ve dun every treatment on earth, mine gets so bad I develop second degree burns, I pray every time it goes in remission it will be the last, but that just hasn’t worked out, it sucks
Patrick...stay hopeful, there are some new treatments coming. I'm going to discuss one of them in a video coming within the next couple of weeks ;-)
Are the burns ever on your face? Whenever I have a bad flare, my face becomes extremely red with a butterfly type rash (I was diagnosed, then undiagnosed, with Lyme, negative for lupus) and burn so, so badly to the point where it can blister. I have photographic evidence and it still isn’t something my doctors take into account. I’m sorry if this is personal, but can you go a bit more into what you mean? Thank youuu. I’ll be praying for you
Thank you for your informative videos. I was diagnosed with crps and allodynia after I fractured my ankle a little over a year ago. Pain medication does not work for me. So I had a DRG stimulator implanted a month ago. Now it feels like I have crps and allodynia around the incision areas in my lower back/buttock. I wish my doctor had told me this could happen. I have to keep my clothes away from the areas. Now I can’t even leave the house except for doctor appointment. Any suggestions to help me?
Kristin Peterman There is Tons of Groups on Facebook, that Can Help or Give you any ideas or Suggestions. Plus its a Great way to meet other & make new Friends that are going through the same Nightmare as you!!
Definitely, I am happy to help you find a knowledgeable doctor to help you with better treatment.
Thanks Shar! ;-)
The CRPS Network, thank you. What kind of doctor should I be looking for? I’ve been seeing a spine and pain specialist. They said they can’t help me with my pain anymore. That they have no more options for them to try.
@@toonces7166 Hi, I'm not with CRPS Network. But I've Had this Nightmare since 1997. So you went to a Spine & Pain Specialist, so did you see Pain Management Yet? Sometimes just from knowledge of dealing with the same thing and I've had Doctors do this in the past to me as well, I used to just let them get away with treating me like that, then I finally figured out their my Doctor, they Work for Me, I pay them, My Insurance Pays them. So No your Not just going to give up on me, You as my Doctor Need to Find something that will work for me and Not Brush me off. Next day I got a Phone call they had me come in and discuss having the Pain Pump implanted, this Helps So Much with the Pain, I also have a SCS Spinal Cord Stim. in my left buttocks/ waist for my intial injury down Left Leg. But Don't you even think there's Nothing else, Because there is All kinds of things they can try and see if they work for you. But don't let the Doctors Brush you Off, I just tell "Well you better find something because I'm Not going anywhere and since your my Doctor and supposed to be Helping me, but you choose not. I'm sure someone Higher than you would like to know what your telling your patients". For some reason, this worked and he started working with me. I hope any of this may Help you, Please keep me Updated on how your doing, Please? Thanks!!
thank you for sharing..my has spread and I hate this..
(American Sign Language): I have CRPS type 2. It spreading from my toe on left foot to ankle now. I wanna cut my toe off when the pain is too much sometimes.
Were you being treated for the big toe?
Please talk to people. It can really help! But I suggest you talk to someone who has it. I've had RSD/CRPS for 40+ years. There were so many hospitalizations. I've been out for six months now. Things can get really bad, but my doctors really help. If the pain gets so bad and I start having problems with emesis and blood pressure they have given me heart Meds, nausea, tranquilizers, etc to add to my regular meds to take at home. It either works or we're off to the ER. Just don't give up. You'll meet some great people! I'll talk with you, just let me know. I'm in a bed 24/7, you just let me know. I'm usually pretty shy... but I'll fight for someone in need. ❤🙏
Great information.. 😉
Thank you Emily!
After being injured and ended up with crps a year later I went to get braces because I knew nothing about it and I suffer with my head and face along with spraining my ankle all of my right side is compromised now
Keisha, oh no...I'm so sorry! I've heard the face and head are the worst possible area to get it. Thank you for sharing about the braces causing issues because I actually had considered something similar (like invisalign). I am always so worried about spreading anytime I need to have any dental work done. With CRPS, our teeth can be a real challenge. I have found an oral surgeon who understands CPRS and has agreed to use ketamine on me anytime I have any oral surgery. Have you been able to find anything to use to help with the pain? How about ketamine troches (under the tongue)? Is it painful to chew/eat?
@@TheCRPSNetwork I only get ganglion steroid injections in my neck but I’m also taking gralise. Is your gums hurt your eye hurts head everything the burning your scalp burns so doing your hair is a bit much. It sucks having sinus issues on top of this
@@TheCRPSNetwork some how I managed to get lucky with it being on one side of my head and I’m not able to chew on that side due to the way my teeth are with the shifting but I probably wouldn’t be able to chew on that side anyway
What about nerve block can cause to spread. Ever since made everything worse.
I have CRPS I feel like I'm literally going "Crazy"!! It's hard for Me to explain to Dr 's that CRPS "Spreading throughout my Body"! I don't know if anyone can relate???? Bumps & reddish pimples started to appear after a painful swelling or just come out of Nowhere?!?!? It "Sucks" because Vitamin C is not working medicine works for a shorter period. Can Anyone relate to these symptoms???? They are more symptoms but these are the Newest Ones that started.
Can the CRPS spread because of an extremely painful nerve conduction test? I had a crush foot injury 2 years ago, I haven't been diagnosed as my symptoms were not complete, but ever since this test my entire body has been burning at night.. no visible changes though.. I cannot sleep and I feel exhausted :(
Hanna, that's a great question. Although there is not any medical proof or studies (that I am aware of), I have heard of several people reporting that they believe they experienced spreading as a result of an EMG test.
Hows are u today? Any improvements?
Those nerve conduction tests are horrid. It's like a torture chamber abuse. I went through one that was an hour long. He made me cry. Then when I finally saw a neurologist he said he had to test himself because the hour long one wasn't good enough. So then this Neurologist Dr did a second test, luckily it was just 15 minutes long. He said he found nothing. But the Dr that did the hour long test said he saw something. Anyway no one warned me of how much pain those tests cause. And then neither Dr did anything about my pain.
I have CRPS in my right leg. I also have had that leg amputated. It has been spreading to my right side of my body. I get twitches in my hand and CRPS pain in a lot of my body.
Hi Vicki, Did your CRPS start after the amputation, or was the amputation due to the problems with the CRPS?
I'm so sorry it's misbehaving. I'm having problems with it spreading too. I'll keep you in my prayers ❤.
@@nitaonstad9965 The amputation was because of the CRPS and the fact that there was nothing else that could be done with my ankle. We were hoping that the CRPS would end as at that time it was just in my foot and ankle. 3 days after my amputation, I started getting issues with my stump and leg. The CRPS had moved into it. I am now in pretty much full body on top of having Fibromyalgia,
I’ve just had to have some biopsies after finding a lump in my right breast. They injected some Titanium clips into both breasts and they left them in, it took five hours.The left side is OK but there’s a shadow on my right side so I’ve got to go back and have all the tests done again next Friday. I’m still in pain from the first biopsies and it never occurred to me to my that it might be from the needle pokes.
I have CRPS in my right foot(ankle) for 6 months, 1 month ago the doctors gave me a lumbar injection of lidocaine for pain, with this injection the CRPS can be spread? And may 07, 2019 I Will have the other appoinment for the same injection, I am really worried.
I'm living in New York and the doctors do not know about CRPS, I take pills Gabapentin. I don't have insurance and Money for travel a other state, I recieve treatment with other doctors 😭
Alicia, Don't worry too much....although needle pokes can be a risk for spreading, it doesn't mean it will everytime. I have had many needle pokes with no spreading. Especially if you are getting a lidocane injection because the area will be numb instantly after the needle is injected. CRPS remembers pain, but if you don't continue to experience pain (because the lidocane has taken effect) then you are much less likely to have lasting pain there.
Living in New York, I know you said you can't go out of state, but if there's anyway you could go to New Jersey, you have one of the country's most knowledgeable doctors there, Dr. Philip Getson. If you need someone to talk to, feel free to email me you phone number. My email is in the description.
@aliciapacheco How are you nowdays? ,look for specific chiropractor in NY maybe he can help you
I been dealing with RSD/CRPS for 10 years on my right lower leg. I cut the tip of my finger and now have a small scar that is sensitive but the pain did not spread. Things that i do at home to control my pain is using Capsaicin Cream 1% , Ice , hot/heat patches, Avoiding dairy products ( going vegan) and things that cause inflammation. I do listen to music to relieve some stress.I have minimal physical activity due to my leg. I do walk a few feet a day depending how i feel and how much pain i can take. No physical therapy has not help still the same. I do take medications when i really need them this includes naproxen for inflammation also CBD. I used to take Gabapentin but it gave me arthritis on my right index finger. I had nerve block injections that help but after the third one my body got used to the drug and it did not last long so i stop. It is best to avoid hard medication if you can tolerate some pain because they destroy your body. Pain is worst at night because when in bed your muscles relax and release lactic acid causing more inflammation. I wish more videos would talk about diet when speaking about pain management.Hope someone finds this helpful and enjoy life much as you can.
That’s great Jon! I hear a lot about diet playing a big part with crps pain. I’ve notice differences myself. That’s great you’ve got vegan. I do have a video on the most inflammatory and anti inflammatory foods.
Sounds like you’ve found ways to keep it in check, especially for 10 years having it. My 10-year pain-anniversary is coming up 3/2/23
I got the lumbar nerve blocks on my back. Crps spread to my lower back.
Oh no! I’m sorry to hear that 😕
Its the worst imaginable pain... I really need help please!
I'm so sorry. It is so horrible. I have it in my right hand. I wanted to die before I started taking a large dosage of gabapentin. Now it's bearable...still miserable but I don't want to die. I wish I could help you.
My husband was stung by a red wasp 3 times on his good leg. Days after his toes on that foot started changing colors and hurting horribly. He hasn’t went to Dr. yet because he will just hear same bull crap.
Oh no...how is he? My only recommendation would be taking vitamin C. I hope he is okay.
Bless you.
CRPS is a crap Gig. It really is it demolishes life and I don't even have the swelling I Have like a less common subtype cold affects me
The cold is rough on us for sure! I think everyone with CRPS should automatically get to move to a tropical island somewhere where it's sunny and warm everyday ;-)
I have crps it's been 2 years I'm in treatment and I take medication and my crps still spread I have full body crps, even with treatment and medication crps still can spread.
Go to Facebook, Spero clinic page
Absolutely, I have had spreading while taking meds and not taking meds. It was much quicker to spread when not on meds.
@@TheCRPSNetwork Thank you for the information Stay safe God bless 💞
I have crps an I'm a bbque I'm on 🔥 I'm in hospital now as my heart flipped 180beats per min an crps so painfull u could smell I was feeling crazy all u see on sites an hear all true
No treatment or meds help the pain, and it still spreads.
Ketamine helped me. I just can’t find a good dr like I used to help me now. My old dr died.
Specific mobility aids can cause spread
Hi have RSD CRPS. Was reading that the pain so bad would like to die no no Pain Management can help. 👌👍
Ron, there are things that can help. Sometimes it's a matter of finding which treatment works or a combination of treatments. Also they are coming up with new treatments all the time. I have a video coming up soon on a new treatment discovered just a few month ago that looks promising.
Hello I have CRPS 6 months, the doctor sent me to do EGM, when is the people that CRPS can we do this exam? And can spread
Alicia, I have a video about EMG test for CRPS. They are incredibly painful and can cause the CRPS to spread. They do not do anything to diagnose CRPS. They can determine if you have other nerve related issues. Check out the video I did on this before you go. If I had to do over again, I would have refused this test!
You need to look into Neridronate infusions since your in early stage CRPS.
It’s the closest thing to a cure.
CRPS don’t spread it grows in abundance by the amount of chemicals in your food supply that you were ingesting in the morning and just the more the problem happens I had CRPS non-diabetic neuropathy celiac disease I have these things now I don’t
I got burn at a restaurant with hot spaghetti over heat in 2018 and at Children’s Hospital Los Angeles. They diagnosed me with CRPS and they told me that it’s spread so I had it on my ankle now I got it on my leg, my knee, my thighs on my hip, my back, my shoulder, my neck and my ear all the left side so now I have to do and I can’t even walk. I can’t do anything so Children’s Hospital Los Angeles wants to do rehab leave me they’re so impatient for 2 to 3 months to do a physical therapy and get a surgery done for that but I have nerve damage so that’s what caused CRPS to