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chronic pain from RSD

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Chronic Pain
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Posted 6/21/2012 6:56 AM (GMT 0)
Just wondering, does anyone here know of RSD, reflex.sympathetic trophy?.my days are getting worse, and just thought i would check in hers to see if anyone had any thoughts on what to do other than take a dozen med and keep out of the cold weather to cope? Im so frustrated... mad
Posted 6/21/2012 10:26 AM (GMT 0)
Mommabayer, hi and welcome to Healing Well.

I'm so very, very sorry that you're dealing with RSD. CRPS/RSD is something I've been living with for 13 years now, since a knee injury when I was 14 years old, and now affects my entire body. It's not something I'd wish on another living soul.

If I may ask - how long have you had it for and where is it? Have you got a good pain management doctor or team? What treatments have you had? What medications? Are you located somewhere where low-dose ketamine infusion might be an option for you? Are you having physiotherapy? Normalising usage of your affected limb/s is CRUCIAL! Have you had sympathetic nerve blocks - either stellate ganglion block if your arm is affected, or lumbar sympathetic block if your leg is affected.

Are you seeing a pain psych? I found it wasn't for me personally, but can be invaluable for some - just different ways of managing the pain, the frustrations of dealing with chronic pain/illness, the fact that for most of us, this is a grieving process.

More invasive methods of pain management for CRPS are the spinal cord stimulator (SCS) and intrathecal pump. I have both - and both have helped me, but the SCS has had its issues - esp. with lead migration and healing.

Has anyone ever told you about Mirror Therapy? I'd suggest Googling it - if you add in the names Lorimer Moseley and David Butler, you should get some helpful information about it.

If you have any questions at all, please don't hesitate to ask.

Laura
Posted 6/22/2012 10:26 AM (GMT 0)
Hi Elise,

Mine is an awfully long and convoluted story!! I first injured my knee hiking in 1999 - only a minor injury but it needed a bit of an arthroscopic clean up job. After the surgery my knee was persistently swollen, hot, red (not infected, just inflamed looking) & I had such severe muscle spasms through my quads that I couldn't bend my knee and actually used to get hyperextension injuries with the worst of it. And of course very severe pain that just wouldn't settle down. Most of mine initially was a deep burning joint pain rather than allodynia - that came later.

My function improved quite a bit after about three years - I didn't have a diagnosis at that stage - but my pain was still pretty severe. In 2005 I had quite a bad meniscus tear of the same knee and needed surgery - but of course ANY trauma/surgery is a huge risk for any pre existing CRPS problem. After that surgery, my whole leg was icy cold, blue, swollen and more painful than ever from above my knee and spreading toward my toes. After that i was diagnosed with CRPS Type I. In early '08 I started getting a little pain in my left foot, then rapid spread up my left leg and in late '08/early '09 into both hands and arms. My right arm's been further jcomplicated with CRPS Type II due to a doctor hitting the nerves during a PICC placement. SCS surgery caused the spread to my back. I've also got dystonia, which isn't uncommon with CRPS, though not to this degree. My gastroparesis, orthostatic hypotension, etc., has been proposed to be dysautonomia secondary to the CRPS.

Have you got any visual signs Elise? Or 'just' allodynia? Crps is typically diagnosed based on pain plus the presence of visual signs like swelling, temp difference between normal and affected limb, change in skin colour, hair & nail growth, sweating (more or less), presence of movement disorders (e.g. Dystonia, twitches, spasms).

Does that help?

Laura
Posted 12/26/2013 5:13 AM (GMT 0)
Yers, I have RSD stage III and Dystonia. GREAT ain't it? I sure am glad to find this groupas it is difficult to hide this from family through the holidays. I hope to sleep til around two o'clock tomorrow. I may get a chance to see two of my wee grandchildren then. It gets so hard to "act" as if you feel well. Plauying with the kids is especially hard. It has only happened twice that I have had dystonic storms while ther. I was able to sneak out or blame it on the cold. As it is my girls won't allow me to be with the kids alone. Guess they think I have some alien disease that is catching or something. The thing is that I want my grandkids to remember Grandma as well as can before aI am thrown into the wheelchair permanently instead of part time for the time being. I sleep so much. DOes everyone else sleep this much? I can actually sleep for two days straight and not wake up except to take meds.
I have a similarly long story. It's where I am that scares me for us all. Mine spread full body from an injured, then operation on knee. It seems we have very like stories about pain and spasms. The Dystonia just KILLS me. I wish we could email, even phone someday. I am very depressed, need someone who really understands. I have seen like cases on You tube but have no idea how to contact anyone.
My service dog has an infection in his teeth that is bothering sinuses now. This worries me . He is my main man. I just love and depend on him so very much. The dystonia is unlike anything I ever dreamed would be possible for any human to survive. My poor husband cannot touch me. I guess I need hug!!! Holidays are nostalgic. I think this adds to the depression somehow. The pain I completely feel so badly that you are going through. I remember how it was so difficult when it first began. Attempting to explain it to the doctor..anyone was impossible. Fortunately I found a doctor who actually "had" RSD himself. Do you ever take teeny weeny steps when trying to walk and bend over? I feel as if I am 95!!! Ha-ha!! My mother is 91! Ha. It's weird because some days I can pass myself off for a short time as looking normal. Is anyone else's intermittent? Allodnia seems to come first then the spasms, the feet turning in, hand curling up and finally the dystonia.
SO much of this comes from spinal injury earlier in life. I have what it called Spinal Myoclonic Dystonia. It took years to pin this down. I used to play tennis and racquetball. I knew that I had the RSD but tried to keep moving when possible. Suddenly exercise made me have these horrendous seizures. They actually did decide that some of them are epileptic. Thank God they are under control, right? I do have much to be thankful for. I am sure we all have some things. It is a relief to talk to one who really understands and it cannot be understood completely unless one has it, can it? I actually love to laugh. So let's try to!! Quick joke anyone? Hope all had a safe holiday and will have a more comfortable New Year. Every day is a blessing..that's why they call it the present.
Posted 12/28/2013 11:05 AM (GMT 0)
I am 39 and was hit by a car and was told I have RSD. This has destroyed my life . My husband left me for someone else because I was unable to do things around the house and there were days I couldn't get out of bed. I was on 22 pills a day. But ever since I got the boston scientific spinal cord implanted it has reduced my pain and all some of my meds. It's really tough. But depending on how long you have had it if in the early stages you can find out about treatments. From an on line book form medfocus the internet. I myself am always looking for a treatment, although I've had it since March 2009. I hope you find something that helps you.

S.C.
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