Posted , 8 users are following.
I had rotator cuff surgery Dec.of 2016. My arm was in a sling for 6 weeks. The first day of physical therapy. My therapist said I had crps. My hand was very swollen. My ortho dr. Says it was not crps. The therapist says he's in denial. I have had NO pain. Just swelling in my hand. Plus stiff joints. I can't close my hand all the way. I was just checking to get opinions. Thank you
1 like, 24 replies
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walter59 kim46140
Posted
kim46140 walter59
Posted
No, I haven't visited a neurologist. What can they do for nerve damage?
brenda_savvy kim46140
Posted
steve0706 kim46140
Posted
walter59 kim46140
Posted
benegesserit kim46140
Posted
https://academic.oup.com/rheumatology/article/50/10/1739/1790019 discusses the possibility of CRPS without pain in a small-but-not-tiny percentage of patients.
Complex regional pain syndrome without pain would obviously be a stupid name, and yes, pain is a Budapest criteria. However, it seems clear that there are individuals who meet the Budapest criteria other than pain, whose symptoms stem from the same or similar etiology to CRPS. If this painless syndrome that is otherwise identical to CRPS has the same potential for degeneration and long-term disability, then shouldn't it be addressed? Maybe the answer is that the name and Budapest criteria need to be re-examined, not that people with every symptom other than pain should be disregarded.
My suspicion is that these people may be underidentified because people with excruciating pain are more likely to seek care and be persistent about obtaining it.
On the flip side of the question of whether someone who might not have CRPS should be receiving CRPS-oriented therapy... wouldn't the opposite apply as well? If someone has symptoms and etiology that are identical to CRPS other than pain, and ordinary PT is not beneficial for CRPS... isn't it likely that the same would be true for the person with painless CRPS-like syndrome?
I suspect I have painless CRPS-like syndrome after an ORIF of my arm a few months ago (I do have some pain, but I wouldn't call it disproportionate).
I have swelling and color changes in my hand, notably different temperatures between the two hands, excessive sweating, increased nail and hair growth, stiff, swollen joints in my hand and arm, far less range of motion in my wrist and hand than the orthopedist thinks I should have, and tremors. While I don't have pain, I do have a weird tactile hypersensitivity to textures, that makes touching things, or having things touch my arm, very uncomfortable - things that feel soft to the unaffected hand feel horrifically rough to the affected hand. I wear my sleeve pushed up most of the time because of this.
It's livable, and I'm extremely thankful I don't have severe pain! But the hand stiffness definitely interferes with my life and job options - I can't come anywhere near making a fist, and I am worried about potential long-term aspects such as osteoporosis. Yet I'm concerned about not being taken seriously, and these "can't possibly be CRPS because it doesn't meet these specific criteria some people came up with" posts illustrate why.
Struggling50 benegesserit
Posted
Hello.
I am so sorry that you are experiencing this disability. And sorry that you aren't being believed.
I went through years of no one believing me about having Fibromyalgia. Some people and doctors still don't believe in Fibro.
I now have CRPS in my right foot and leg.
It sure sounds like you have CRPS. The sensitivity to touch is definitely a symptom.
CRPS is a Syndrome. It is complex. Hence the complex and syndrome in the name. And it isn't always regional. Some people have full body CRPS therefore making the "regional" part of the name mute.
Find a physical therapist who treats CRPS and do physical therapy with that therapist.
I don't have insurance and had to pay out of pocket for therapy. I paid day of service and they cut my bill in half.
Or look online for physical therapy for CRPS and do the exercises yourself.
I only went to physical therapy for a month and a half until I was injured in physical therapy.
I started doing physical therapy on my own. I went to the local rec center pool and did the exercises I learned in physical therapy. Except the one that hurt me.
Look at my last reply under Colleen's post. I explain how I "reset" my sympathetic nervous system. How to make the affected limb accept touch and temperature again. How to reduce swelling and gain back mobility and lessen stiffness.
Private message me for more info.
I am more than happy to listen and share advice.
Everyone is different. No two cases of CRPS are the same. No two cases will respond to treatment the same. But it doesn't hurt to share info and give it a try. You have to do SOMETHING. Or yes, you will become disabled.
I still have some pain. Some days worse than others. Some days no pain at all. Some days I have mild swelling. Some days I have one tie that twitches. Sometimes
My foot turns pink and mottled.
But this is SO much better than leg and foot contractions I couldn't control. Discoloration of the foot, purple, red, white and mottled. Freezing cold or burning hot. Shiny tight skin, swollen. Stunted hair and nail growth. And the unbelievable pain. And sensitivity to touch or more like extreme sensitivity to touch.
My pain went from an 8,9 and sometimes 10 to now mostly a 1 or 2. Worst now would be a 5, on those occasional bad days.
I was on crutches for a year. I could not walk without them. I have been walking without the crutches for a year and three months now.
I will definitely take where I am now compared to a year and a half ago!
If I had started my own physical therapy when I first was hurt in physical therapy, I would probably be in even better shape.
The sooner you start "normalising" the limb the better your chances are of complete remission or cured.
The person named Steve who replied in Colleen's post calls it resetting your sympathetic nervous system. That is true. You have to reset not just the nerves in the limb, but reset the WHOLE nervous system, the brain too.
I had to do this with the Fibromyalgia too.
It is a painful and difficult task but it must be done. You just have to do it.
Private message me:-)
Take care and gentle hugs.
Tracy
andrea_57971 Struggling50
Posted
Struggling50 andrea_57971
Posted
Hi, Andrea.
I am sorry to hear you are in so much pain and having a hard time with doctors.
Many people have a hard time getting a diagnosis of CRPS. Some doctors don't really know about CRPS, some don't believe it is a true disease and some just don't want to go there, some don't even think about that CRPS could be the problem.
What happened to cause your injury? What are your symptoms? What have the doctors told you? Is this a workman's comp case and that is holding up a diagnosis?
I am willing to help you in any way I can. I'm not a doctor. I have done a lot of research on CRPS and have tried many different things for CRPS.
Private message me or reply here. I check throughout the day.
Gentle hugs,
Tracy