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CRPS/RSD

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Chronic Pain
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Posted 7/6/2014 12:15 PM (GMT 0)
I was diagnosed with CRPS Complex Regional Pain Syndrome/RSD Reflex Sympathetic Dystrophy after a house fire almost 4 years ago. People who don't know what it is should really research it before they judge people who have it. Some times I don't have swelling but I can always feel the pain in every motion. I went from only having pounding migraines every time I had a flare up too also having a chronic dull head aches now all the time, that never go away and when I have a CRPS/RSD Major or minor flare up it turns into the blinding migrain headache. Doctors are afraid to touch me because of the fear of the disease spreading. Therefore I must live with torn meniscus and ingrown toenail pain. People need to understand how disabling this disease really is. I'm starting this thread to support others with this condition. smhair smhair
Posted 7/6/2014 12:44 PM (GMT 0)
Welcome to the forum, kookla.

There are several members with pain in this spectrum. I don't have regional pain but allover central pain syndrome. I don't seem to have flares but constant pain. So, I commiserate with you.

Do you get any relief from medications? I only get relief from regular types of pain, like my previous fibromyalgia and knee and shoulders that need surgery.

Best wishes for a flare-free day.
Posted 7/6/2014 2:01 PM (GMT 0)
I got some nerve block series that didn't help at all. I take clonodine, Vicodin and topiramate that seems to keep things at bay. The complications of this are pretty bad though. When I had another injury it went into my other arm and leg so there are days I can't walk.
Posted 7/6/2014 3:22 PM (GMT 0)
Hi Kookla & welcome to the forum. Sorry to read what you are dealing with in the health area. CRPS is a complete different animal all on it's own.

I am however, glad to read you have medications that are helping you. Many people suffer horribly with this disease & get little relief with treatment. The key to it, is finding a pain mgt dr that is experienced in treating CRPS. One of our mods has had it since she was a teen & now has full body CRPS.

If you will use the search feature here at the forum & type in CRPS you will be able to pull up posts about it & perhaps will find some valuable info. There is a lot of different treatments available, whether they work is like anything else we try dealing with chronic pain.

Take care.
Posted 7/6/2014 5:10 PM (GMT 0)
Thanks Susie, I will check it out. I will try anything.
Posted 7/8/2014 4:34 PM (GMT 0)
Hi there Kookla - I'm Laura, the mod Susie mentioned.

Regarding your problem knee and toenail - it's very true that further surgery, especially on an area already affected by CRPS, can cause major problems and many surgeons are very wary of touching us because of this - but having untreated mechanical pain can also make CRPS worse as it contributes another source of pain to trigger off our nervous systems.

Although it's a very scary prospect, I would suggest looking around to see if you could find a good pain management doctor and a surgeon who understand CRPS and are willing to work together to at least give you a review. Recovery is often slower and there are increased risks like I said - but there are also a number of precautions that can be taken... This would include things like running a low dose ketamine infusion at the time of surgery, using epidural anaesthesia to control post-operative pain, sympathetic blockade during/after surgery, and so on.

My only 'big' surgeries since my CRPS diagnosis have been related to my spinal cord stimulator and pump, but I have friends who've had everything from ankle and knee reconstructions, to shoulder surgery, to total knee and hip replacements - with varying success (mostly good) - but it's certainly done.

Very best wishes - and if you've any questions please ask

Laura
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