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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....

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Dec 18, 2023
In reply to @daveandchris "It is necessary for me to speak instead of type. I am unable to type very..." + (show)
@daveandchris

It is necessary for me to speak instead of type. I am unable to type very well due to the pain.
10 years ago after a surgery on my right elbow, my right hand developed CRPS. A pain clinic near me was recommended. After the first attempt with a ganglion block, the doctor declared I did not have CRPS and walked out of the room.
In the meantime, I was doing a lot of reading and research. This is when I discovered the Mayo Clinic website. The information it gave was more helpful. But I could not afford to relocate to the clinic. That is when I reached out to a university medical center about a half hour from my house.
Ganglion blocks did not help, but the physical therapist located at the Pain clinic was very good. She understood the need for continued mobility. but she also understood the necessity of not making it worse. For the next year, I followed a daily regimen. I also began to wear compression gloves that seemed to help with the pain and especially kept other things from touching my hand.
I’m a pianist. I no longer play. After about a year, the symptoms began to subside, and one day I no longer had to wear my compression glove. Little by little I was able to live without pain. I was in remission. Unfortunately, my range of motion was compromised enough that I still could not play. My hand was stiff. But the pain, the constant pain, was gone.
Two months ago, I fell very hard and broke my left wrist. Almost immediately I was certain that CRPS would return. Because it involves a broken wrist instead of no injury to the hand like my right hand, it has been much more painful and physical therapy much more difficult. I feel like I still have a broken wrist. A nearby physical therapist made it much worse. I am now trying to return to the university medical center of ten years ago.
A back surgery over two years ago has also left me in pain. I’ve wondered if it, too, is CRPS. I’ve been back to the surgeon, then on to two other clinics. None believe it is CRPS. One said it is my SI joint. Perhaps. I’ve been to so many doctors that I gave up and just try to remain mobile. Walking and not much sitting. Lying down when I just get tired of it. Now, my left wrist and hand.
I cannot take Gabapentin. I’ve taken ibuprofen and Tylenol. I’ve been on a depression med for many years. Also meds for epilepsy and osteoporosis.

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@daveandchris, giving up piano as a pianist must be hard to reconcile with. You mentioned your pain has got better in your hands but the stiffness remained. Is that something you hope to improve over time to be able to play again, or is that not a realistic outcome? Have you found any other hobbies to help distract from the pain?

I'd like to invite @airey2 who also broke their wrist recently and talked about CRPS issues as a result.

@daveandchris, you mention you have seen many doctors and have given up trying to find one who will listen or offer help. Did you explore your SI joint as one had mentioned?

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1 reply
daveandchris | @daveandchris | Dec 18, 2023
In reply to @JustinMcClanahan "@daveandchris, giving up piano as a pianist must be hard to reconcile with. You mentioned your..." + (show)
@JustinMcClanahan

@daveandchris, giving up piano as a pianist must be hard to reconcile with. You mentioned your pain has got better in your hands but the stiffness remained. Is that something you hope to improve over time to be able to play again, or is that not a realistic outcome? Have you found any other hobbies to help distract from the pain?

I'd like to invite @airey2 who also broke their wrist recently and talked about CRPS issues as a result.

@daveandchris, you mention you have seen many doctors and have given up trying to find one who will listen or offer help. Did you explore your SI joint as one had mentioned?

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My right hand was never able to regain the fluidity of motion, as well as reaching an octave. Gardening was one of my passions, but my back makes it very difficult. I’m looking into raising the beds in my front yard so I can, once again, play in the dirt.
As Jacob T Marley said, People should have been my business. I have been serving in a society of women who minister to one another. I have always loved reaching out to others. Being depressed, it has been a great way to forget myself as much as possible, and serve others. I is amazing how much I forget my hand while I talk to others who also need healing. This is another passion, and one I can do. Also, family.
As far as my SI joint, I have found no help. I finally received a call from the university that helped me ten years ago, but their schedule is out two months. They may have a cancellation in three days. In spite of it being a long drive for me, I told them I will do all I can to come, if it opens up.
It isn’t a cure, I know. But they were more knowledgeable than anyone close by as far as therapy within CRPS parameters. And they sure tried over and over to help me get to remission. I’m just back in the dark, here.

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magilty | @magilty | Dec 25, 2023

Cranial sacral manipulation by a certified physical therapist helped me.

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heavenbound | @heavenbound | Dec 27, 2023

I am it's from long term use of benzodiazipines which have damaged my CNS. I'm almost 41 months off and I'm STILL in pain mostly in back and legs now. I've had up to 116 different bizarre symptoms from benzos! Please wean off benzos very slowly otherwise it can be dangerous & lead to protracted withdrawals.

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heavenbound | @heavenbound | Dec 27, 2023
In reply to @iowamamaof7 "Have you had your b12 or folate tested? From my understanding, to accurately test for b12..." + (show)
@iowamamaof7

Have you had your b12 or folate tested? From my understanding, to accurately test for b12 serum you need to be off of b12 supplements and b vitamin drinks for at least 4 months (the average life of a red blood cell) . There are other tests to be ran too, but there is no gold standard test. Plus, there is research that the "normal" cut off of above 200 is too low, especially if neurological symptoms are present. Have you heard of the book Could It Be B12? I listened to it for free thru my local library and the free app Hoopla. You can also watch the free movie Sally Pacholok on YouTube. She also has a website. From my understanding, if you have neurological symptoms you need every other day b12 injections until symptoms improve. Nerve pain and mouth pain can be signs of b12 deficiency. I am also getting the run around in doctors. I have lots more to say on this. But I'll stop here while you have time to process and research what I've said. I've learned I have to advocate and fight for my life. I wish you well!

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Good response & some of us have a genetic mutation where we cannot process B12---those of us who have the MTHR genetic mutation, we need a methyl formulation and this goes for Folate as well.
Nerve pain & mouth pain can also be from benzodiazepines! They are not for long term use! My CNS is still very damaged & I'm in pain everyday for almost 41 months since stopping Klonopin. Never cold turkey off benzos if you've been on them for any extended time (more than 2 - 4 weeks) as it can be dangerous & can cause protracted withdrawals.

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1 reply
grannyzoo | @grannyzoo | Dec 28, 2023
In reply to @heavenbound "Good response & some of us have a genetic mutation where we cannot process B12---those of..." + (show)
@heavenbound

Good response & some of us have a genetic mutation where we cannot process B12---those of us who have the MTHR genetic mutation, we need a methyl formulation and this goes for Folate as well.
Nerve pain & mouth pain can also be from benzodiazepines! They are not for long term use! My CNS is still very damaged & I'm in pain everyday for almost 41 months since stopping Klonopin. Never cold turkey off benzos if you've been on them for any extended time (more than 2 - 4 weeks) as it can be dangerous & can cause protracted withdrawals.

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Good morning! I have CRPS in my legs. Also have a Boston Scientific implant which I love . BUT here’s what I want to encourage you to do: STOP EATING REFINED SUGAR…IMMEDIATELY! You’ll have withdrawals but magnesium and lots of water help. You’ll get a nasty headache, which is nothing compared to the CRPS, and feel lousy for several days. It stops! Absolutely a small price to pay to stop the CRPS pain. Your energy will improve. It’s a win-win because you’ll feel better all over! The change is noticeable immediately and continues to improve. Eat fruits and vegetables and protein. Personally, I eat a lot of fish and chicken. Your mood will improve. Your skin will look fantastic. The energy. As the nike slogan goes…JUST DO IT. Stop putting those meds in your body.

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Nancy Banks | @banksnc49 | Dec 29, 2023

I’m new to this site. I’m looking for some answers for chronic pain from my rib cage to my waist. My gastroenterologist has done every test she can think of on me and nothing shows up. I have constant burning in the area I mentioned which really limits my eating an drinking. I’ve lost about 26 lbs since may and haven’t tried to. Even drinking water hurts. I’ve never heard of CRPS before. How did you get diagnosed? I have other health issues but they haven’t been addressed by any of my drs yet except for my gastroenterologist. She’s stumped.

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abbeyd | @abbeyd | Jan 30 3:07pm

Looking for other people that have CRPS, that have currently been treated, are receiving treatment that they have had successful results with. Willing to share experiences with. What has helped, and what has not helped, or has exacerbated the symptoms.

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martyo321 | @martyo321 | Jan 31 7:41am

My brother recently was diagnosed with this horrible disease. He is currently in a rehab facility for PT but that is temporary.
Has anyone ever had experiences with acupuncture for this. It has been suggested to possibly be helpful. Any response would be appreciated.

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cincin3 | @cincin3 | Feb 1 2:18pm

I would also be very interested to know how you get a diagnosis of CRPS!

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