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ParaLegalize11 karma

So first off I'm not a doctor, but I was diagnosed with RSD/CRPS and I'm doing this off the top of my head so take it with a grain of salt.

My understanding is that CRPS "tricks" the nervous system into thinking it's actually in pain. When you have a trauma "pain" and when that happens your body tries to prevent death/bleeding out, and so forth. It does this by cutting blood flow to the extremity, or "shutting down" parts of your body.

As I understand it you can lose limbs this way, and if it progresses to your nervous system it can shut your entire body down. e.g. Death.

ParaLegalize7 karma

My husband was recently diagnosed with this condition after a failed surgery in his foot. I think he is just starting to wrap his head around the permanence of this condition. Do you have a specific area that haunts you? How has it changed over the years- has it progressively gotten worse or different?

I'd just like to add that I was diagnosed with RSD which is also known as CRPS. If your husband would like to chat sometime have him PM me.

To answer your questions though - My main issue is my foot. I was in a motorcycle accident and that's what they think was the cause. Nobody knows for certain though. I went through several years of treatment and countless doctors. They say if they catch it early enough it is possible to limit it, my doctor, however, informed me that it is a progressive condition and could result in my death if it progressed to my central nervous system. This however is relatively rare from my understanding.

My condition has progressively gotten worse as time goes on. It started out as a dull pain and progressed to the point that simply standing or walking to the bathroom can have me in tears. In the spectrum of CRPS though I am quite functional compared to many others.

I know each person is different but having someone there for you can be the greatest "treatment" you can have. I went through a period of which I tried to kill myself after losing my S.O. The whole experience is not something I want to repeat and I'm doing much better mentally now. The downside of state insurance is that they don't cover a lot of the mental health stuff that I tried to get into before it got so bad. Hopefully your husband is in a job that is able to accommodate his CRPS.

ParaLegalize4 karma

Take my response with a grain of salt as I have chosen not to take any medications because my brain is the only perfectly functioning bit I have left in my body.

I have gone through physical therapy including ultrasonic stimulation of the affected areas, custom insoles, stretching, injections of both anesthetic and cortisone, and steroids. There has been no improvement from any of the treatments I have received over the past few years.

The best treatment I have received would be mental support from others, "friendships", and so forth. It takes my mind off of the pain and honestly helps me forget it.

If you don't mind me asking do you still dream, and how do your dreams go (positive, negative, happy, etc)? I have found that I no longer dream like I used to. I will wake up with no memory of a dream. Once in awhile I will have one and I remember having them often as a kid but now find myself rarely having any dreams which I find weird.

ParaLegalize4 karma

I deal with chronic pain, too. Although, what you're dealing with requires way more strength. How do you make sure your condition doesn't mentally affect you or your dreams?

What sort of chronic pain do you suffer from? I was diagnosed with RSD/CRPS and it really messed with my head mentally. I have not found a "cure" for mental health myself so if you do please let me know. I have had anxiety and panic attacks, and been through a few periods of which I attempted to end my life.

Chronic pain is by no means fun, and I'm on the lesser side of the pain for people who have CRPS as I am still mostly functional as in not bound to a wheelchair (yet).

ParaLegalize3 karma

What caused your case of CRPS?

My doctors believe mine was caused by a motorcycle accident but nobody can tell definitively. It's very hard to diagnose CRPS/RSD. I went ~6 years before I was definitively diagnosed and went through 3 years of constant treatment before they decided it was CRPS. I refused to try experimental medication they wanted to push on me because it had extremely severe side effects so there were many periods of time in which I just quit treatments.

Also, do you know anyone else with CRPS? Is there like a support group or something?

I don't know many people at all with CRPS/RSD. I met one person online before seeing this AMA but am not aware of any support groups or even online forums for those with similar conditions.