View Single Post
Old 06-23-2013, 02:39 PM
reluctant@thetable reluctant@thetable is offline
Member
 
Join Date: May 2012
Location: Wisconsin
Posts: 144
10 yr Member
reluctant@thetable reluctant@thetable is offline
Member
 
Join Date: May 2012
Location: Wisconsin
Posts: 144
10 yr Member
Default

So what will work? One specific type of treatment or a combination of different treatments? Any new breakthroughs? Has any one heard of Mirror Box therapy for this malady?

Thank you anyone who can answer some or all of my questions!

piper[/QUOTE]
I'll try to answer to the best of my ability some of your questions but you have to remember each of us is different and some treatments may work for one and not the next.
CRPS is considered incurable BUT someone with it puts their hope into getting remission. People have been known to go into remission for years and then come out of it. If you're one of the lucky ones to go into remission it's important to try to avoid anything like injuries or unnecessary surgeries that might bring you out of remission. (Some people wear medical alert bracelets just in case.)

The root cause of crps is currently being considered to be in the brain and in the spinal fluid. It's a very complex disease so I couldn't possibly cover all the information here or even from memory. This is the reason it can't be "cured" to date with something like a block. The medical profession isn't really sure what causes it and believe there are many things that can contribute to its development.

I have a neurologist and a pain management specialist (tends to be an anesthesiologist with advanced training in pain management). I find that the neurologist tends towards treatment with therapy and medications whereas the pain management md (PM) tends to treat with procedures like sympathetic blocks. You may want to have both types of doctors to cover all your bases. I started with crps in my foot and had 2 lumbar sympathetic blocks. The earlier one gets them, the more likely they are to work. I had mine at the 6 month mark. The first did not not even raise the temperature of my foot to register (it was so cold) but I had questionable relief 2 days later. So the PM repeated the LSB at 2 weeks. My foot went from ice cold to 98.2 degrees but I had no pain relief- it actually increased my pain.

3 mo. of private disability is not a lot of time to have any treatment to knock crps down. Heck, I had to wait over 2 months just to get an appt. with my PM. If your neck injury was a result of a work injury or someone else's fault, I would recommend getting a workman comp's attorney or personal injury attorney. This tends to be a disease with lifelong implications. On the bright side, the earlier your disease is diagnosed and treated, the more likely you are to get good results.

I've tried mirror therapy. It's interesting that my physical therapist (yes, you'll need one of those too) did some testing on me with photos of feet in different positions. I'd have to quickly say if it was a left or right foot. At the end of the stack of cards, he'd count up how many right feet and how many left feet I had picked out (in other words, he separated what I said were left feet vs. right feet). My injury was in my right foot. I always had many more cards in the "left foot" pile. After I'd done this test over a period of appts. w/ him. I realized what the testing meant- My brain was not recognizing my right foot. So I did do mirror therapy for a while to try to "fool" my brain into thinking I could move my right foot without pain and restriction.

As far as what therapy works, each of us is different. I would highly recommend you read as much about this disease as possible. This is a great site for that but also read from other sites. There are organizations too like rsds.org that has info. Do web searches and you'll find lots of info.

You'll need a team of medical professionals to help you. I have an internist (just because I've always had him but he manages my elevated blood pressure that's developed since I acquired crps). I have a neurologist, a pain management specialist with a specialty in crps (these tend to be few and far between- I have to travel to another state to see him), a pain psychologist, a physical therapist- warm water therapy is good for crps and a pharmacist. It's a complex disease with complex therapy required. People try (I'll try to remember as much as I can) medications including anti-depressants that work both on the pain and the resulting depressing, anti-spasmotics, pain creams, pain patches, Ketamine, ketamine cream or lozenges (called troches), pain pills - my PM doesn't like narcotics but does prescribe Tramadol- a synthetic narcotic. Diet- there is a 4-D diet that avoids preservatives and additives in foods- a retired MD, Dr. Hooshman, has a website that lists many of helpful things including the 4-D diet. Do a search on his name and you'll find lots of info on his site. Vitamins with an emphasis on Vit. C. If you ever injure yourself in the future, take vit. C. for a bit of time afterwards. Take vit. C for a week prior to any invasive procedure. HBOT- hyperbaric oxygen therapy since there may have been a lack of oxygen to the small fibers in the affected area that contributed to the development of the disease. IVIG- intravenous immune globulin infusions since there may be an auto-immune component to the disease. Mirror therapy. AVOID ice at all costs to the affected area. Run from any medical professional who tells you to ice the area. Lumbar sympathetic blocks. Indwelling epidurals, spinal cord stimulators. My mind is starting to fog now so I have to log off. The basic point as you can see is that crps is complex and so treatments are complex. Hope you can hit it quick and achieve remission and/or pain relief.
reluctant@thetable is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Brambledog (06-29-2013), Djhasty (06-24-2013), Vrae (06-26-2013)