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princessinpain

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Hi. I was in accident in 01/2000. I was told it was RSD. None of the symptoms made sense. Finally (After 8 years), I found a great Pain Specialist who knew pretty fast, that I had Fibromyalgia. After that, I'm still in pain...but things are definitely better than they were ;)
 

1sweed

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Hello, and welcome to the forum. Could you please explain a bit about what RDS, is so we will know more of what your suffering from. I know another member has mentioned this as well, and frankly I was wondering if it goes along with fibro or is something entirely different.

Anyways please join in and ask more questions or just add your voice to the conversations in any section you choose. Be sure to read through the general questions, as well as, alternative methods, and pain management section. The forum has talked about medications and home remedies that worked or did not work for them. But it is aways nice to know the different types of treatments out there and how they affect those who suffer from fibro.

Glad you found us. :)
 

katydid

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Hello princess! Welcome to the group! Sorry you're here, but glad you found us!

If you don't mind me asking what are your symptoms?
I'm wondering because I'm sort of in a similar situation, but reversed lol. I was in two bad car accidents a few years ago, and have been diagnosed with a slew of issues; fibromyalgia, Allodynia, separated ac joint, bulging herniated and degenerative disc's, nerve damage, tilted pelvic bone, tmj, etc.
However, I suspect that my fibro diagnosis is wrong, or at least not the whole story of my problems lol... But I think that it's wrong unfortunately (well when I say unfortunately, I mean I just want the correct diagnosis, not that I want fibro or any of these issues for that matter.....).

My mother has had RSD for 15+ years, and now Dr's are suspecting I do as well.

I posted a thread on the main general discussion area, if you're interested or bored and feel like reading a novel lol sorry- I'll warn you its long.
I'd definitely be interested to know what lead your Dr's to diagnose RSD, only to years later decide it's fibro instead?
Have you considered a dual diagnosis? The possibility that you could have both isn't unlikely...
Also, what kind of treatments did the Dr's have you try in the past for the RSD diagnosis? And did any of them work?
 

katydid

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1sweed, I copied this off of a website because it was much faster and my fingers are not cooperating well tonight....
Sorry it's a lot, but it sums up the syndrome pretty well in my opinion.


What is CRPS/RSD?
CRPS/RSD is a chronic condition characterized by severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling, and extreme sensitivity to touch. The syndrome is a nerve disorder that occurs at the site of an injury (most often to the arms or legs). It occurs especially after injuries from invasive procedures, such as surgeries, intra venous treatments, injections or anything that penetrates the skin. However, it may occur without apparent injury. It can also occur from something such as a broken limb, sprained ankle or a simple bee sting. The condition was first documented (and named "Causalgia") in the 19th century by physicians concerned about pain that Civil War veterans continued to experience after their wounds had healed. Doctors often called it "hot pain," after its primary symptom. Over the years, the syndrome was classified as one of the peripheral neuropathies, and later, as a chronic pain syndrome.Currently, there are two types of CRPS that are differentiated-type I and type II. Both types share the same basic set of symptoms, but have one distinct difference: type I (previously referred to as RSD) describes cases in which there is no nerve injury, while type II (formerly called causalgia) refers to cases in which a distinct nerve injury, for example a surgery or invasive trauma, has occurred.CRPS/RSD is one of the most painful afflictions known to medical science.

What are the symptoms?
The symptoms of CRPS/RSD usually occur near the site of an injury, either major or minor, and include: burning pain, muscle spasms, local swelling, increased sweating, softening of bones, joint tenderness or stiffness, restricted or painful movement, and changes in the nails and skin. One visible sign of CRPS/RSD near the site of injury is warm, shiny red skin that later becomes cool and bluish.The pain that patients report is out of proportion to the severity of the injury and gets worse, rather than better, over time. It is frequently characterized as a burning, aching, searing pain, which may initially be localized to the site of injury or the area covered by an injured nerve but spreads over time, often involving an entire limb. It can sometimes even involve the opposite extremity. Pain is continuous and may be heightened by emotional stress. Moving or touching the limb is often intolerable. Eventually the joints become stiff from disuse, and the skin, muscles, and bone atrophy.

The symptoms of CRPS/RSD vary in severity and duration. However, there are usually 3 stages associated with CRPS/RSD, and each stage is marked by progressive changes in the skin, nails, muscles, joints, ligaments, and bones. Stage 1 lasts from 1 to 3 months and is characterized by severe, burning pain at the site of the injury. Muscle spasm, joint stiffness, restricted mobility, rapid hair and nail growth, and vasospasm (a constriction of the blood vessels) that affects color and temperature of the skin can also occur.In stage 2, which lasts from 3 to 6 months, the pain intensifies. Swelling spreads, hair growth diminishes, nails become cracked, brittle, grooved, and spotty, osteoporosis becomes severe and diffuse, joints thicken, and muscles atrophy.As the patient reaches stage 3, changes in the skin and bones become irreversible, and pain becomes unyielding and may now involve the entire limb. There is marked muscle atrophy, severely limited mobility of the affected area, and flexor tendon contractions (contractions of the muscles and tendons that flex the joints). Occasionally the limb is displaced from its normal position, and marked bone softening is more dispersed.CRPS/RSD was originally thought to be the result of malfunctioning nerves of the sympathetic nervous system-the part of the nervous system responsible, for example, for controlling the diameter of blood vessels.
 

1sweed

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katie-opny,

Thank you for adding that description of RDS. It sounds almost like Raynauds Syndrome gone wild and amuck. My aunt has severe neuropathy in her legs and feet, and this is something I will share with her. Is there any form of treatment for it that works or is it a down hill battle? It is possible that your car accident started the fibro, but you got the RDS from your mother. Is that possible? I will have to read up on this more. :)
 

katydid

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Rsd isn't really a genetic issue... There's only One study I've read of that attempted to find do out if it was genetic but that's it... RSD is triggered from a physical trauma ie an accident, sprain or Fracture, surgery... If I do have fibro, which I really don't think I do based on not having some pretty common and prominent symptoms that others with fibro have, I think it would have come in the order of RSD first then fibro maybe due to over active nerves and pain signals?....
Just like fibro, rsd has no cure... Just treatments to manage symptoms...
I recently had what's called a 'sympathetic nerve block' done, which is used dually in diagnosing and treatment.. And I was amazed when it actually provided some relief! She only did the block on one leg tho, so I need her to do my other leg now and possibly my back and neck if possible....
It is suspected I may have the rsd in my entire lower half, or possibly full body...other things that can be used to help are tens units or a spinal cord stimulator (it actually gets implanted in you!), epidurals and nerve blocks, medications, massage therapy (if you can stand someone touching you..), hydrotherapy, surgical sympathectomy.... Unfortunately, if you have rsd, you're stuck with it, and it becomes your new 'best frenemy'!

I did post more about the possibility of RSD for myself in the general topic forum under "suspecting I was misdiagnosed" I think that's what I titled it lol. Sorry it's been a long day and I can't think straight haha.
Thanks for responding and being interested! =]
 

princessinpain

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Hello 1sweed and katie-opny. Thank you for all your kind words & concern. RSD does not generally come along with fibromyalgia. I was in accident, I was hit in my 3 the tips of three fingers...The place I was at insisted my hand in ice, the pain moved right to my shoulder (classic RSD). When I went to the emergency room...they barely looked @ my hand & were more concerned with my shoulder. My husband's Orthopedist checked me out soon after & gave me that diagnosis.....Much made sense, much didn't. When I finally got the diagnosis of fibromyalgia & read all I could (which I don't know if it's possible...It's on going). I felt it was closer to what I was dealing with & felt some relief.

I do feel something else might be going on. I'm not sure what :-( .....Katie ~ I look forward to reading your post.....I am so happy to have found this forum.
 
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