Is CRPS curable?
Posted , 6 users are following.
I have had CRPS in my wrist since surgery 15 months ago. It is somewhat better but not great. Does anyone get totally cured from CRPS.
0 likes, 9 replies
Posted , 6 users are following.
I have had CRPS in my wrist since surgery 15 months ago. It is somewhat better but not great. Does anyone get totally cured from CRPS.
0 likes, 9 replies
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taminflight david80207
Posted
I was diagnosed this past November and all the research and posts here, say no. Everyone will have different experiences and different ways to make their life easier.
My CRPS started 3 years ago when I tripped and fell at work. The impact was on my right knee and the symptoms changed all the time. The colder the weather, the more pain I'm in. Stick with us, you will get the support you won't get anywhere else.
Struggling50 david80207
Posted
Hi.
Sorry to hear you have CRPS.
The younger you are the better the chance of total remission.
I have CRPS in my foot and leg. The more I use the foot and leg the better the CRPS is. Not overusing it. Just walking, standing, normal everyday stuff.
I had to work through the pain in order to walk again. But once I started using it more the pain lessened significantly and the other symptoms lessened as well.
It is hard to do but don't completely baby it. It only makes it worse and you end up losing total function.
Keep in touch.
brenda_savvy david80207
Posted
But I think it’s very positive your wrist is improving. I think you should hold onto that positive news and keep doing what you are doing. !!!
sabrina51474 david80207
Posted
Hi David,
I'm a registered nurse who has had full body CRPS for about 3 years, related to a knee sprain and subsequent surgery on the knee.
To answer your question, about 80-85% of all people recover from CRPS in the first year after injury/surgery. Some people have such mild symptoms that they don't even think to mention the burning pain/color changes etc., to their medical team. And even among the patients that do mention it, some doctors don't have the experience or education to recognize what they're looking at. So some patients can go for years before getting the firm diagnosis of CRPS, and some people doubtless NEVER get the diagnosis at all, but instead are treated for things like fibromyalgia, Reynauds, and even psychiatric conditions. Not that you can't have all this stuff and more along with the CRPS, but just saying.
People can recover even after the one year mark, especially if the signs and symptoms haven't spread significantly. The general rule is, the sooner it gets treated appropriately the better your chances are for full or near-full, recovery.
Up until the last 10 years or so, the only thing doctors knew to do was treat the pain, either with opioid and other classes of medication, or nerve blocks and implanted pumps of one sort or another. This was kind of like treating Lyme disease with aspirin or Tylenol to reduce the fever: It was only addressing symptoms, not the root cause.
Now there is compelling evidence that CRPS is more of an autoimmune/inflammatory condition and should be treated as such, with medications like corticosteroids, and if no good result there, IVIG, plasma exchange, and then on to biologics that reduce inflammation by targeting your over-active immune system.
There is accumulating evidence that even patients who have had CRPS for many years may respond well to the above treatments. Unfortunately, there is a percentage of patients with chronic signs and symptoms who will never fully recover, and for them, the focus is on symptom relief and interventions to help insure best possible quality of life, as depression and anxiety can be problematic for all of us, but especially the ones with less chance of meaningful recovery.
I garden during the season, even if I can only do it for 15 minutes a day. Find the things that keep you sane and productive, and sleeping reasonably well. Keep looking at the new journal articles that come out on CRPS treatments; you may have to keep your doctors informed as well, so print up a copy of any good article you find, if you can, and give to your doctor. This greatly increases the chance that he or she will actually read it.
Many of us have gotten relief from things you can do at home, like the ketogenic diet (sort of like Paleo, low carb, lots of good-quality protein, reduces brain and nervous system inflammation), some have a prescription for low-dose naltrexone. Some like using a home TENS unit. Many take supplements that include lots of essential fatty acids like Omega 3's, B vitamins, magnesium and calcium, vitamin D. Avoid artificial colors and flavors, and hydrogenated fats; these increase inflammation. Drink plenty of water; 64 oz. is good for most people, more in hot weather. If you need to have some other sort of procedure such as dental care or a minor surgery, etc., you need to look up the protocol on the RSDSA site for how to prevent further flaring/worsening of your CRPS related to new trauma (and what is a medical procedure except a scheduled trauma rather than an unscheduled one such as slipping on your way out to collect the mail??).
Do what you can to normalize sleep cycle as much as possible, and reduce anxiety and/or depression. Many of us at one point or another are freaking out due to inability to work the way we did before injury, so money and family dynamics, work place dynamics, etc., are all stressors. You probably already know that if you get stressed out, the pain, etc., gets worse.
Take care. A lot of smart folks on this site. Don't hesitate to keep asking questions; somebody here, and usually more than one, will have some answers for you.
Best wishes for recovery,
Sabrina
WinterHyena david80207
Posted
As previously mentioned, there is no cure for CRPS. In big part because researchers do not understand CRPS and its core cause. CRPS does have 'stages' and the lower stage you are in the better chance you have of going into remission or partial remission. Once you get advanced pain (higher stages) that has spread to other limbs or locations it is harder to control as your nerves are already rewriting themselves. The key to CRPS is treating it whether that it medication, injection, therapy, etc. Never just wait to see if it gets better. Leaving CRPS alone to fix itself just generally wont happen.
taminflight WinterHyena
Posted
Unfortunately for me things got worse every month since I wasn't diagnosed for 3 years and since my injury was at work, the workers comp insurance company won't approve anything. No meds, no recommended nerve block procedure nothing. As I write this post my "pins and needles on fire" symptoms are intense.
taminflight WinterHyena
Posted
Unfortunately for me things got worse every month since I wasn't diagnosed for 3 years and since my injury was at work, the workers comp insurance company won't approve anything. No meds, no recommended nerve block procedure nothing. As I write this post my "pins and needles on fire" symptoms are intense.
WinterHyena taminflight
Posted
taminflight WinterHyena
Posted
Thank you, yes I have a great attorney who only does work comp. I was diagnosed by the orthopedic specialist who is the team doctor for the LA Kings and the Lakers. They are not questioning the diagnosis they just won't approve anything. I know how the game is played I worked for a workers comp insurance company. We are working on a settlement. The hardest thing is to sit in pain until it's settled and I can go to my own doctors.