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pfox
@pfox

Posts: 7
Joined: Jul 14, 2017

CRPS - anyone suffering with complex regional pain syndrome

Posted by @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….

REPLY

Welcome @pfox.
You mention that your daughter has CRPS. I just want to make sure you mean complex regional pain syndrome which used to be called RSD (reflex sympathetic dystrophy). If yes, we have a couple of active discussions in the Brain & Nervous System group that you may wish to join.
– I developed CRPS (or RSD) http://mayocl.in/2cX10nN
– RSD/CRPS http://mayocl.in/2nJPDog

Liked by lauren123

I don’t claim to know anything about CRPS, but i had chronic pain in my right lower back, hip, leg, knee and ankle for 1.5 years. In December, 2016, I had a laminectomy surgery on my L5-S1 to fix a problem that affected my left lumbar area with acute pain. The surgery stopped the left side pain. I went through PT and pain meds for my right side pain, and nothing helped. I finally decided to try Active Release Therapy (ART) that I read about on Mayo Connect and others said had helped their pain. I had 8 sessions (2 per week) and each week my pain was less. I am almost completely pain free now, and it’s been a month since my last session. I go for a touchup on Monday. This is the best thing I have ever done for my pain. ART involves deep pressure on various muscles while the practitioner moves my limbs in different directions. I use a local chiropractor, Todd Andrews, who is also certified as an ART and sports medicine practitioner. He also uses laser therapy to warm and relax the muscles. The theory behind this therapy is that your muscles get bound together with your nerves, and they have to be released in order for the pain to dissapate. I am amazed that after 1.5 years of constant excruciating pain, I am now only having a little pain at night when I sleep. I can handle that! I recommend that you check out this therapy for your daughter. Best of luck, Gail B.

@colleenyoung

Welcome @pfox.
You mention that your daughter has CRPS. I just want to make sure you mean complex regional pain syndrome which used to be called RSD (reflex sympathetic dystrophy). If yes, we have a couple of active discussions in the Brain & Nervous System group that you may wish to join.
– I developed CRPS (or RSD) http://mayocl.in/2cX10nN
– RSD/CRPS http://mayocl.in/2nJPDog

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What’s the difference between that and fibromyalgia/chronic fatigue, which is what I’ve been told I have.

@colleenyoung

Welcome @pfox.
You mention that your daughter has CRPS. I just want to make sure you mean complex regional pain syndrome which used to be called RSD (reflex sympathetic dystrophy). If yes, we have a couple of active discussions in the Brain & Nervous System group that you may wish to join.
– I developed CRPS (or RSD) http://mayocl.in/2cX10nN
– RSD/CRPS http://mayocl.in/2nJPDog

Jump to this post

you are right – complex regional pain – my bad – I appreciate the additional information.

@colleenyoung

Welcome @pfox.
You mention that your daughter has CRPS. I just want to make sure you mean complex regional pain syndrome which used to be called RSD (reflex sympathetic dystrophy). If yes, we have a couple of active discussions in the Brain & Nervous System group that you may wish to join.
– I developed CRPS (or RSD) http://mayocl.in/2cX10nN
– RSD/CRPS http://mayocl.in/2nJPDog

Jump to this post

It is very similar but fibro – best way to describe CRPS is that all the known afflictions have been eliminated by various doctors from RA, neuropathy, carpal tunnel, fibro, etc. the nerves in the body feel like they are on constant fire with no relief. the disease starts slowly and builds in intensity – it can spread to all parts of the body. unknown what triggers the onset – from a surgery or even twisted ankle can trigger the onset – what medicines that work for fibromyalgia does not work on the CRPS. a slight breeze can cause flare up, advance stages can not tolerate heat or ice, — no relief to date. hope this helps a little.

@gailb

I don’t claim to know anything about CRPS, but i had chronic pain in my right lower back, hip, leg, knee and ankle for 1.5 years. In December, 2016, I had a laminectomy surgery on my L5-S1 to fix a problem that affected my left lumbar area with acute pain. The surgery stopped the left side pain. I went through PT and pain meds for my right side pain, and nothing helped. I finally decided to try Active Release Therapy (ART) that I read about on Mayo Connect and others said had helped their pain. I had 8 sessions (2 per week) and each week my pain was less. I am almost completely pain free now, and it’s been a month since my last session. I go for a touchup on Monday. This is the best thing I have ever done for my pain. ART involves deep pressure on various muscles while the practitioner moves my limbs in different directions. I use a local chiropractor, Todd Andrews, who is also certified as an ART and sports medicine practitioner. He also uses laser therapy to warm and relax the muscles. The theory behind this therapy is that your muscles get bound together with your nerves, and they have to be released in order for the pain to dissapate. I am amazed that after 1.5 years of constant excruciating pain, I am now only having a little pain at night when I sleep. I can handle that! I recommend that you check out this therapy for your daughter. Best of luck, Gail B.

Jump to this post

Thank you Gail – my daughter goes twice a week for PT and sounds just like what she has done to her – it helps but the CRPS keeps hitting her body so relief is temporary. I’ll ask her if it referred to as ART. she now has Esophageal Spasms leading into stomach and now taking special blood pressure meds which can help slow or stop the spasms….it appears the CRPS is attacking many parts of her body… but she is a fighter… praying somewhere out there is a pill to slow or reverse this ugly disease.

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

@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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Steve, Welcome and that sounds like a horrid disease and accompanying pain. When you were first diagnosed, had you previously injured your foot? You said your last surgical procedure, was that related to your foot? This is just something I don't know anything about, so asking questions for my learning curve. I hope you will find some people with a comparable problem, possibly learn something, but most of all, find support from a group that I have seen engage in tremendous care for the community and people who are able to encourage others when you could not imagine walking a mile in their shoes. I continually learn that we are so much better as a people than our news coverage would ever lead you to believe. Blessings, Gary

Y

Yes I do. Could tell you all about it! 19 years I have lived with it!! Perhaps longer! I have Chiari. Every nerve feels like it is on fire when the Chiari decides to flare! You can't even scratch your head or hair! Have had the surgeries at John Hopkins in Baltimore for my Chiari. So nerve damage goes right along with it! The surgeries are not one I choose to remember. Zappers are a everyday occurrence! I like call them shockers or bolts! Sometimes, pain management does not even touch them!

I don’t have your daughter’s diagnosis but I do have chronic pain, diagnosed as ‘Central Pain Syndrom ’ following a midline stroke. I too had intense burning, knife like pain all over my body. At first, I just remember the intense burning, like coals being pressed into my body. It was awful. 6 years later, Acupuncture helped a whole lot. Did not cure the pain, but diminished it to a level where with Opiod and neurotrophic drugs ( to interrupt the pain signals.to my brain) I can function and am able to do activities of daily living and get out, drive, etc. it does, however, continue to be a daily battle. Good luck to your daughter.

Liked by warrior777

@oh_suzie_q

Yes I do. Could tell you all about it! 19 years I have lived with it!! Perhaps longer! I have Chiari. Every nerve feels like it is on fire when the Chiari decides to flare! You can't even scratch your head or hair! Have had the surgeries at John Hopkins in Baltimore for my Chiari. So nerve damage goes right along with it! The surgeries are not one I choose to remember. Zappers are a everyday occurrence! I like call them shockers or bolts! Sometimes, pain management does not even touch them!

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Horrible ,how do you put up with it your a strong person for sure When I have nerve pain one thing that helps me is a homeopathic it's called Nerve pain formula by Botanic Choice

I was diagnosed with 1 year ago after crushing my wrist. I’ve been taking a supplement that combines Palmitoylethanolamide (PEA) with luteolin, called “Mirica”. It has helped me more than anything. Reduced the pain by at least 4 points. Also LDN and bisphosphonates can be helpful. With CRPS it usually takes a combination of things to get symptoms under control.

@colleenyoung

Welcome @pfox.
You mention that your daughter has CRPS. I just want to make sure you mean complex regional pain syndrome which used to be called RSD (reflex sympathetic dystrophy). If yes, we have a couple of active discussions in the Brain & Nervous System group that you may wish to join.
– I developed CRPS (or RSD) http://mayocl.in/2cX10nN
– RSD/CRPS http://mayocl.in/2nJPDog

Jump to this post

i was diagnosed 4 yrs ago with CRPS. I have had 2 nerves cut. each time the pain has jumped to another nerve. My dr. wants to cut the 3rd nerve but said he is 99 percent that it will jump to another nerve. I have been in the hospital 3 times with a bad infection caused by the tissue deteariating. Has anyone had similar experiences?

Liked by drarnold

I have had first RSDS and now CRPS. I have had it now for 21 years. I had a sympathectomy which didnt work. It started in my left ankle after a crush injury due to a forklift accident. I have had about 100 lumbar epidurals. Which helped alot until it wore off. I was then put on Methadone tablets to help control the pain. That was 21 years ago and i am still on the Methadone which now carries its own problems. I have suffered with depression and anxiety for the same amount of time. Many times i had thought of laying my leg on a train track as it would be quick and easy. But never did as i am to scared to do it. It has been an utter nightmare. I am now 61 years old. And i dont think its going anywhere soon. I am also on Citalopram, Proprananlol. I have tried Fentynl. But didnt like the way it made me feel. Gabapentin. Not on it now. It is very difficult to find a doctor that believes you and trying to convince family members its not all in your head. (Well i guess it is in a way) but it doesnt affect all people the same way it has affected me. Some get it alot worse and some get rid over time. But unfortunately not me.

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