CRPS - anyone suffering with complex regional pain syndrome

Posted by pfox @pfox, Jul 14, 2017

I am new to this forum- my 40 year old daughter suffers from CRPS that has spread to whole body – her nerves are on fire… it is attacking her digestive system too where she has severe GERD. She goes to Pain Management doctor, gastrointestinal doctor and has wonderful PT that helps to loosen her tense muscles which can eventually atrophy. this was recognized in 2014 as a rare disease by CDC but her chronic pain is intense… we keep searching for help and guidance… since many do not understand this horrible affliction…. thanks for any advice….

Interested in more discussions like this? Go to the Chronic Pain group.

@drp985

Anyone have full body RSD. I know there are not that many with full body and that there are no Doctors that understand what that means.
I’m looking at a stem cell therapy. Like to do it a Mayo but can’t contact anyone. So I guess it’s going to be Vanderbilt.

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Hi, @drp985 – yes, it is definitely good to see a doctor who truly understands what you are facing. Hope you may be able to contact one of the Mayo Clinic campuses about an appointment at the link ethanmcconkey provided.

How is this pain you are having impacting your daily life?

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I have CRPS since 2015. Started in my knee and spread to both legs and feet. I was in a wheelchair, couldn’t deal with noise, vibrations, crowds, weather changes, etc. Nerve blocks, physio and meds weren’t helping. I read in a blog like this about a treatment in Italy and decided to try it even though the results were better for people who had crps less than 6 months. Best decision ever!!! I went in a wheelchair and left Italy being able to walk. It’s been 2 years now, and I’m back at my full time demanding job and some days forget that I have crps at all. It’s still there, but so manageable now- mostly just burning at night which is quickly solved with cbd oil and a good night’s sleep. I hope this helps somebody out there. The treatment was neridronate – I think it may be available in the US as well now.

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@schesse

Hello All, I was just diagnosed with CRPS after my last surgical procedure on July 27, 2017. It's in my left foot, for the first 10 weeks I was in bed taking pain pills every 2 hours 24/7. It wasn't for the nerve pain it was to glogg my mind so I didn't have to focus on the nerve pain that was intolerable. The nerve pain was so severe I was on suicide watch by my family. Once the doctor saw me he diagnosed me right away with CRPS, he schedule a diagnostic injection a week later and I had some relief for about 2 weeks. Since then I have had 2 injections with Botox which last for about 2 1/2 months with some relief but gives me some hope. He started me on Terazosin which is a medication to lower my blood pressure. I haven't been on it very long so i will try to keep you updated on my progress. Most recently I have been having similar nerve issues now in my right foot but not as severe but it's the beginning. I have to say what has worked the best is my faith and praying 24/7 to take the pain away. I did go to pool therapy at first it was very difficult all I did was cry but I stayed with it. Each pool session got better then I started to have land therapy which started out rough then it got better. Both therapist had gone through CRPS courses which makes it much easier because they understand what we go through. Another thing to watch out for is being pricked by needles, every time I am pricked with a signal needle my symptom will worsen for about 5-7 days. I am now seeing a Christian Pain Psychiatrist that is going to start with a program called EMDR for CRPS & Chronic Pain. I will try to keep you updated on my progress. At this point of our life we have to try anything because there is NO cure for this disease. One other thing I want to share with all of you. I have a brother that is a Nero Chiropractor that practices in Sweden for over 30 years now. I begged him to fly home which I offered to pay for his trip. After thinking about my condition and changing his work schedule he came home for 8 days to work his magic on me. At first he could not touch my left foot nor work on it so he started from my head and worked his way done day after day. By the time he left he was able to touch my foot with little resistance from me. This was a miracle that he was able to touch my foot, prior to this a fly could not land on my foot if so it was very painful. After he left to go back home he did some research to find a Nero Chiropractor near where I live. This wasn't easy because there are very few Nero Chiropractors in the USA. If you can locate one I highly recommend to go see them. The one he found for me was just starting to take course from a doctor in Canada. When and if I get up to it I plan on flying to Sweden to have my brother work on me for about 2-3 months. I cant imagine what he can do for me after 2-3 months after seeing what he did after 8 days. Again I will try yo keep you posted when this time comes, it may be he'll come back home before I can fly.
Everyone that has this disease, I will add everyone of you to my daily prayers.
Good Luck – Steve

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Hello I’m Cindy’s and I was recently diagnosed with CRPS after an accident I had at work in 2019 to my left foot and the pain is absolutely intolerable. I’m seeing a pain management doctor which has me on gabapentin she also just prescribed terazosin and a cream to apply when I’m able to touch my foot. I had a nerve block done in January 2020 and I had a severe reaction to the steroid and ended up in the hospital so needless to say the nerve block didn’t work. My employer, friends and family do not understand the unbearable pain I’m constantly in. I was wondering if anyone has any advise or suggestions on how to deal with the pain or anything that has worked for them. I have an appointment to go to the Cleveland Clinic on Monday for more treatment. All suggestions and advice is very much appreciated. Thanks

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Hi I'm new to this forum and was diagnosed with crps after a fall in 2018. It started in my left foot and is going up my leg and I'm starting to have symptoms in my right foot. I live in a very small town where doctors just don't know what to do with me. As soon as I was diagnosed with crps my physical therapist said there was nothing else they could do for me and told me to stay home and keep my foot up. I have no insurance and I feel stuck. I didn't know if there was anywhere I could go for help. The doctor I am seeing now is a low cost doctor that gives me pain meds but she never heard of crps before me and knows nothing about it. She even told me it couldn't spread which I know is not the case after researching crps after being diagnosed. Currently I am in bed 90% of the day to keep my foot elevated. If my foot goes down it turns a dark purple and is excruciating pain. If my foot is elevated the pain is bearable. But I see pictures of people in wheelchairs with their feet down. So I was wondering am I alone that I have to keep my feet elevated or does everyone just deal with the pain? Thank you

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@sassycat

Hi I'm new to this forum and was diagnosed with crps after a fall in 2018. It started in my left foot and is going up my leg and I'm starting to have symptoms in my right foot. I live in a very small town where doctors just don't know what to do with me. As soon as I was diagnosed with crps my physical therapist said there was nothing else they could do for me and told me to stay home and keep my foot up. I have no insurance and I feel stuck. I didn't know if there was anywhere I could go for help. The doctor I am seeing now is a low cost doctor that gives me pain meds but she never heard of crps before me and knows nothing about it. She even told me it couldn't spread which I know is not the case after researching crps after being diagnosed. Currently I am in bed 90% of the day to keep my foot elevated. If my foot goes down it turns a dark purple and is excruciating pain. If my foot is elevated the pain is bearable. But I see pictures of people in wheelchairs with their feet down. So I was wondering am I alone that I have to keep my feet elevated or does everyone just deal with the pain? Thank you

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I always had the same problem with needing to elevate. I don’t have to do it much anymore, mostly at night and if medical marijuana- especially cbd which won’t get you high is an option I would try it. Everyone is different, but I can take it and literally watch my leg turn from purple to normal within a matter of minutes. If you can find ways to get improvements (for me the turning point was neridronate infusions) you can start internalizing the message to your brain that it’s improving. I also found massaging it myself helped to reduce the sensitivity and try to think positive and even say it out loud even if it’s just to yourself- I know it sounds crazy, but it’s our brain controlling it and they say that helps to believe it more. I know how hard it is to push past the pain, but there’s hope! I’m 98% better and my doctor was no help either- honestly learned more from these blogs

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Welcome to Connect, @k135, @cindy78 and @sassycat. While we wait for others to join in and share their insights, I’d like to offer this information for Mayo Clinic, about CRPS.
Complex regional pain syndrome (CRPS) appears to be an autoimmune condition, in which the body responds in an unusual way to a perceived threat. As the immune system fights to defend the body, inflammation occurs. https://www.mayoclinic.org/diseases-conditions/crps-complex-regional-pain-syndrome/symptoms-causes/syc-20371151

I’m certain fellow members, @mlross4508 @gracie2018 @suerc @healingone @scruffy1 @barbbie @jeffyoung @dmac5 and others will return to share their insights with you. You might also be interested in viewing these Connect discussions:
– CRPS and Nevro SCS https://connect.mayoclinic.org/discussion/crps-and-nevro-scs/
– Anyone used Spinal Cord Stimulation for pudendal nerve entrapment? https://connect.mayoclinic.org/discussion/anyone-experienced-in-using-scs-for-chronic-painb/

I thought I’d provide more details about the treatment that @k135 has mentioned–Neridronate: https://journals.sagepub.com/doi/full/10.1177/1179559X17732971

Neridronate is approved in Italy for CRPS but the FDA has not approved this drug or its equivalents in the USA. Although patients with CRPS Type 1 have found success and gone into remission, there is no research that shows anything from a new injury, serious illness/disease, extreme stress, or simply stubbing your toe wouldn’t cause a return of the CRPS either in the same place or possibly in a new area.
"Major trial of CRPS ‘potential cure’ drug Neridronate halted” https://www.grunenthal.com/en/press-room/view-media-statement?pressReleaseId=01a51358-e3c6-493f-9353-377a34884dd7

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@k135

I always had the same problem with needing to elevate. I don’t have to do it much anymore, mostly at night and if medical marijuana- especially cbd which won’t get you high is an option I would try it. Everyone is different, but I can take it and literally watch my leg turn from purple to normal within a matter of minutes. If you can find ways to get improvements (for me the turning point was neridronate infusions) you can start internalizing the message to your brain that it’s improving. I also found massaging it myself helped to reduce the sensitivity and try to think positive and even say it out loud even if it’s just to yourself- I know it sounds crazy, but it’s our brain controlling it and they say that helps to believe it more. I know how hard it is to push past the pain, but there’s hope! I’m 98% better and my doctor was no help either- honestly learned more from these blogs

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Thank you 🙂

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@sassycat

Hi I'm new to this forum and was diagnosed with crps after a fall in 2018. It started in my left foot and is going up my leg and I'm starting to have symptoms in my right foot. I live in a very small town where doctors just don't know what to do with me. As soon as I was diagnosed with crps my physical therapist said there was nothing else they could do for me and told me to stay home and keep my foot up. I have no insurance and I feel stuck. I didn't know if there was anywhere I could go for help. The doctor I am seeing now is a low cost doctor that gives me pain meds but she never heard of crps before me and knows nothing about it. She even told me it couldn't spread which I know is not the case after researching crps after being diagnosed. Currently I am in bed 90% of the day to keep my foot elevated. If my foot goes down it turns a dark purple and is excruciating pain. If my foot is elevated the pain is bearable. But I see pictures of people in wheelchairs with their feet down. So I was wondering am I alone that I have to keep my feet elevated or does everyone just deal with the pain? Thank you

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I'm sorry you are going through this. My daughter was diagnosed with CRPS in October 2019, she is 10. I've been corresponding with parents for several months on a Facebook Support page for parents and collected helpful information. It is very slow & painful progress as it is like learning to walk again, but here is what I've found is the best treatment in my opinion. Remember you are building a new pathway to the brain in telling your brain that there is no longer an injury and you will use that foot / leg. As painful as it is you must move/ use your foot to build that pathway otherwise it will spread as the glia cells will look for new receptors. Use your foot!! The most successful treatment is too keep moving your foot. Frequent physical therapy and occupational therapy, desensitization to the effected area. Meaning, touch with a feather, then cotton swab, eventually tissue, towel, baby brush, etc. Daily for 3 minutes, every 2-3 hours. Soak your feet in warm water. Move your foot in a tub of rice or dry beans. Sit on a yoga ball and put feet flat on padded surface or pile of blankets. Move back and forth. Swimming in heated pool. Don't give up! Small progress is better than none. We went from crutches, one crutch, to no crutches, walking on tip toe. It was hard and It still hurts her like crazy but she's are working on it. The programs that are recommended for her are pediatric intensive pain rehab programs either outpatient or inpatient/ 4-6 weeks, 9-5p where patients learn to mentally cope and move through pain, making that new pathway. Patients can go in remission!! There are programs for adults too. I would do as much as you can yourself, put yourself on a schedule to be as proactive as possible while getting more information and how to move forward.

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Hello all, I'm 35 years old and was just diagnosed with Chronic Regional Pain Syndrome after about a year and a half with going to specialist and no one knowing anything. Then I go to another doctor who at the first visit diagnosed me with it. It's in my right arm ( which I'm right handed ). They say it normally happens from a previous injury but I can't think of anything that would have injured my arm. She has me on Lyrica 150mg three times a day. At first it was doing really good dealing with the pain now it seems like it's come back 10 times plus. My GP wants to increase the amount I am taking up to 200mg 4 times a day… I know a few of you have stated different things working for you but I'm wondering is there something else I can take that will take the pain away completely without having to take pills all day every day???

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I have CRPS of my left arm. Occurred after a fall, then rotator cuff surgery.. I was taking Gabapentin and currently switching over to Lyrica. My fall was over two years ago, so this has been going on a long time. Everyone is different, so treatment is so individualized. What level of pain do you have? Once I got up to 3600mg a day of Gabapentin, my pain level went from a 7 to a 6. I started PT again with the lower pain level, and it went back to a 7. I have had many side effects from Gabapentin, so hoping Lyrica has less. You are the first person that I have conversed with that has CRPS in an arm. Most seem to have it in their legs/feet. My pain specialist suggested a Spinal Cord Stimulator for me. However after doing a lot of research on the success for CRPS of the arm, very little positive data could be found. I also am a breast cancer survivor and with the Spinal Cord Stimulator, you can’t have MRIs of your torso. I empathize with you and would like to see how your journey progresses. Best of luck and stay in touch if you like.

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I have crops in one foot the pain is unbearable

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@madhouse30

I have crops in one foot the pain is unbearable

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CRPS sorry

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