Internal organs can be affected by CRPS (Complex Regional Pain Syndrome). This condition has had so many name changes there’s no wonder many medical professionals have never heard of it. Many sufferers have to wait too long for a diagnosis, wait too long for adequate pain relief, wait too long for answers.
What body parts are affected by CRPS?
It’s well documented that CRPS affects skin, hair, muscle, bone, nerves. Even nails.
I know patients who cannot bear the lightest touch on their affected arm or leg. Their limbs are swollen, the skin reddened, shiny and swollen as if it were about to burst. You can tell they’re in agony just by looking at their affected body parts.
Some people stay in this ‘heated’ CRPS condition for a long time. Their skin is badly affected and may develop nasty sores.
I’m past that stage now. My arm and shoulder always feel cold. Extreme cold causes me more pain. I need more pain relief in winter than at any other time.
What about internal body parts you can’t see?
If nerves and skin, muscles and bone are so obviously affected by this painful condition doesn’t it make sense that internal body parts are also affected?
It’s just common sense to me. But then I’m not a medical expert.
In my last post about CRPS I wrote about gastric problems. When I saw my GP I explained what was happening and how I believed there was a connection with CRPS.
He wanted to eliminate other possible suspects. I told him about the kind of diet recommended by Dr Hooshmand and how I’d already taken that advice on board. Nevertheless, my GP said, we’d have to go through the elimination process: blood tests, scans etc.
I don’t have celiac disease. I’m not diabetic nor even borderline. One by one all tests came back negative so we eliminated other possible causes for my bouts of vomiting and diarrhoea. Then I had ultrasound.
I have Gallstones
‘Oh,’ I said to the nurse practitioner. ‘You said that in the plural. How many?’
‘Too many to count.’
That isn’t me in the image above but you get the picture. Because I don’t have the kind of pain normally associated with gallstones there’s no treatment necessary. Apparently. Yet.
‘There are probably tens of thousands of people walking about with gallstones just like yours who know nothing about it,’ said the nurse practitioner.
That’s all right, then. So what’s causing the vomiting? And the other?
CRPS affects internal organs
It’s official. People with qualifications say so. Here is a link to how I knew that before I went to see my GP.
I don’t blame him. He can’t know everything. Plus, he’s bound by procedures. But, no treatment at all?
I guess that means I just have to put up with it.
In the meantime I stay away from fatty things and don’t eat too much sweet stuff. I try to be sensible but when the CRPS pain flares up I know it won’t be long before I dare not wander too far from the bathroom.
The good news is: red wine is NOT on the list of things to avoid completely.
Thank you for reading. Sign in to my subscription list to receive a brief email to let you know about new posts. Your email remains private. Leave a comment. I’d love to hear from you.
Author with CRPS signing out now.
44 years of “causalgia”, RSD, CRPS. And IBS since the 80s. I went to a new gastro 4 years ago and on the intake qas a whole separate question “Do you have CRPS?” as we all know usually it’s not even one of the check boxes but they came right out in a whole separate question and asked if I had CRPS! Shock huh? I check yes. How long they ask? Where? Have you had a spread?
Holy moly. A gastro! So I asked. “You don’t have IBS. You have CRPS of the colon. That’s why you have had diarrhea for 30+ years.
I had a massive spread when I had covid. Makes total sense that whole cytokine thing. Now I’m just waiting for them to figure out that it affects our heart. And that in the end, CRPS is actually fatal. Just found your blog as I’m about to start my own. I’ve never met anybody who’s had it longer than 44 years. You think they’d want to study me wouldn’t you? 24 – 68 years old. My entire life.
Btw, since covid they say its in my rib cage and larynx. My voice dropped an octave. Deep breathing isn’t what it used to be. But they say CPAP is treatment for long covid. (3.5 years) CPAP has helped POTS for sure.
Hello Be,
good grief you’ve had a hard time of it.I wish I had the words to offer you some relief. Have you started your blog yet? Are you on X, formerly Twitter? There are groups of CRPS people on there who regularly share info and updates. Also on Facebook, i think. Sending you warmest wishes,
Celia
I just stumbled upon your post regarding CRPS. I have been struggling with this for three years and, I too, went out to the neurological clinic in Arkansas (as Kay mentioned above) but only for an informational visit. I was also saddened to see so many young people suffering from CRPS. It’s a huge time commitment and a huge expense so I’m trying to work with a local chiropractor before I make the decision to go. My CRPS is in both hands and has spread up to my shoulder on my right side. I did discover that I’m struggling with POTS, a chronic viral infection as well as adrenal fatigue. I’m staying positive despite the pain, lack of range of motion and days of overwhelming fatigue. It’s been a journey like none other- I’m considering ketamine or even a trip to Italy for Neridronate Infusions should this pain not let up! Anyway, thank you for sharing your experience- CRPS is a lonely place as so few docs have never heard about it!
Where did you eventually go? You should share that info .My wife has been suffering with crps for eight long years.Ketamine and cortisone help ,but are no cure. Any help would be appreciated .Thank you.
Hello Don, thank you for commenting. Since I wrote this post about internal organs and CRPS I’ve had no treatment at all. I’m just putting up with it. When I feel completely worn out I just go back to bed. I’m sorry I haven’t anything more positive to offer you and your wife.
Best wishes,
Celia
Ah, Kay I’m sorry to hear about your disappointing results at the treatment centre, not to mention the cost. But you kept on fighting. Good for you. I’m so glad your daughter is fighting too. Walking again, how fantastic! Motion is lotion, so they say.
All the very best to you,
Celia
Hi there i got diagnoised with crps about 2years ago now but i had my accident 3years ago but at late i have been getting chest pains i have been back to my doctors but he said it was due to me being on a crutch but as you know yourself you know your own body but i know its not due to being on my crutch and i had a ct scan but said it was abnormal but waiting to go back for more tests but as i have been looking it does say it can affect your internal organs and i was just wondering if you have ever heard of that
Cheers
Tony
Hello Tony,
I’m sorry I’ve only just seen your comment. I hope you’re having a low pain day. I’m finding the hot weather difficult whereas at one time I couldn’t stand the cold!
As to your chest pain I can see how regular use of crutches would cause muscle pain because you’re moving in a different way and making those muscles sore. I remember I ached everywhere when i tried to use crutches. I was hopeless at it because I couldn’t put any weight on my left arm so I kind of hopped. I was sore for weeks. Keep going back to your GP if you’re still concerned. Make a fuss.The squeaky wheel gets oiled first.
From my reading I know that CRPS can and does spread in some cases. Look up what Dr Hooshmand has to say about it. Print it out and take it to your GP. So many of our GPs know so little about this condition.
Wishing you all the best,
Celia
My 11 year old daughter has CRPS, we are getting treatment in Fayetteville Arkansas at The Neurological Relief Center. So many people of all ages and stages of CRPS are getting into full remission here. Might check out their Facebook page, videos specifically spoke to me as a mom and gave me hope enough to call and come. Wishing you the best!
Hello Kay,
thank you for your comment. I’m glad your daughter is getting good treatment. It must be truly devastating for such young people to suffer from this condition. It sounds as though they have excellent results at this Neurological Relief Centre. We have only one clinic specialising in CRPS here in the UK and there’s a waiting list a mile long!
I’m doing fine at present, thank you. I still have my off days but I’m coping. All the best to you, too.
Celia
Neurological Relief Center turned out to be a disaster. 5 weeks roughly $7000 plus the expenses of living in a hotel for 5 weeks. She promised to rein frequency specific microcurrent to reduce inflammation of the nerves but I discovered she wasn’t doing that. She used it in such a way that it caused significant pain in areas she didn’t have pain. We went to another practitioner the day we left the NRC and got it ran correctly. It brought her 8 pain down to a 0 on day on and began to restore her mobility day one. Took 5 treatments until pain didn’t raise above a 0-2, and the 2 wasn’t CRPS pain but soreness due to 11 weeks of immobility. After 12 sessions and 5 weeks she was able to start walking again. We got her into remission! She’s in pt now rebuilding her severely atrophied muscles.