I Need to Hear From Anyone With RSD

[Mollyrae]

Back in December I started experiencing nerve pain in my arms and legs, mainly on the left side but often on the right also. I was extremely sensitive to hot and cold temp changes and did not want my skin touched. I would cover it up so as the air didn't get to the skin. As the months went by my muscles and joints began to ache. Sometime in March my muscles started hurting so bad that it was hard to get the pot of water into the coffee maker and the bottoms of my feet became so painful that it started to become hard to walk. As the months go by my condition is deteriorating, almost debilitating. I am at the point where I am so weak and in so much pain that cannot function. I am becoming forgetful with not much consentration (spelling). I have had many tests done which include RA, ANA, EMG, Lyme, Anti-CCP, all negative. I did have an elevated Sed Rate and Proteins which the Doc cannot find the reason why. I do have Hepatitis C and that will give me muscle and joint pain but not to this degree. My own research suggests that I could possibly have RSD. I have many of the symptoms and it is a possible factor with Hep c. I would like to hear from anyone who suffers with this disease. I need help please.  Thank's......Mollyrae

[Toomanyadvil]

I think I've heard the same type of thing, but also read that the injury could be as small as a paper cut on your finger. I'm pretty sure it was for injuries that continue to send pain messages from the receptors after the injury heals. So I think tuck is right.
Defenitly keep us posted!

[Tuckamore]

I am so sorry for your pain. I don't remeber all I learned about RSD. I thought it is suppose to follow an injury to the area. I did resaerch it sometime ago. The nerves continue to tell your brain that you have pain, long after the injury is healed. ChitChat described it well. The pain is greatly magnified over what it would have been from the injury. A PMP thought I had it at one time but because my extremity did not "change temperature" significantly is was ruled out. I really think that it generally follows an injury (even minor) and is more localized than your SX. I am no physician and I couold be 100% wrong. Have they tested the levels of your vit. and minerals? The elevated sed rate indicates you have inflamation in your body and usually the protein elevation indicate damage to tissue(s). I agree that I would seek another opinion. very soon. Sometimes it takes thinking out side the box or just a fresh look at everything. Again I am so sorry you are hurting and having difficulty concentrating. (I find when my pain is elevated I am unable to concentrate or even reason very well.) I wish you the best and hope you will finds answers very soon. Please keep us posted. We care. Tuck

[Melissa70817]

Also, along with FM it is normal to have other conditions as well.  I have Bursitis in my hips, bone spurs in my fingers, etc.  The bone spurs in my fingers cause swelling.  I would like to say that the bursitis is what made my hips swell but I think its just age..haha  Normally FM is not the only condition a person has.  

[karen717]

There are no definative tests for fibro. It is sort of that observation thing and process of eliminating other things. Fibro does cause (so my doc said) the illusion or feeling of swelling in the hands and feet. That is one of my symptoms. Although I don't believe sometimes that it is a feeling of swelling but actual swelling (like you ring not fitting). I think fibro should be investigated further. I have read that some believe fibro has some tendency to be genetic or at least 'stays within the family'.  
Karen

[Mollyrae]

PS....My Mom has FM and she is nowhere as bad as me? This is why I wonder..Molly

[Mollyrae]

Thank you for your response! The odd thing is that I don't have the discoloration associated with RSD but I do have minor swelling starting in my feet and fingers. I am almost to the point where I cannot wear my wedding ring. I have had a Thyroid panel done and it was within normal range. The Rhumatotogist had suggested Fibro as well as my previous Doc I had 5-6 yrs ago (back then what I thought were major aches were really very minor) infact, she had listed that as one of my ailements until I was diagnosed with Hep C. so the FM was swept under the rug. Could it possibly be a severe case of FM? I was told that swelling is not a characteristic of FM. I do have a pain dr. He is also my pcp. Actually he is a Dr that specializes in Orthopedics, instead of having a MD after his name he has a DO. Should I be tested for FM? I will look up the McGill Pain Index, I did not know of such a thing. Well, thank's again. The input is nice.  Molly

[ChitChatNine]

The sympathetic nerve pathways are the ones that control pain, temperature, etc., in the body .. when something goes askew in that area what happens is the body does not shut off the stimulus even after the injury is healed; and this can all happen usually with a minor injury.  My daughter's started a few days after casually falling in a roller skating rink like any kid will do .. she was about 13 at the time and fell palms down to break the fall; a few days later her pinky swelled to 3X its size and the rheumatologist she was seeing thought for sure it was broken; did an x-ray; saw it was perfectly fine and from there her keen diagnosis with early physical therapy saved the day and she is ok.  Happened again a few mos later from an elbow being hit by a swinging door .... in her case the cold mottled coupled with the hot red swollen were dead ringers for RSD along with Pain that is Out of Proportion to the incident, yet "not in one's head".

C~

[tresa47]

I have been disgnosed with rsd..there is no test, no blood work that can give a diagnosis of rsd(that I know of) It's mainly through observations of symptoms. I suggest you find a pain management specialist, one that is familiar with rsd. Many doctors don't even know what rsd is. My primary care told me he sees a case once every 5 or 6 years. It is a very painful disease, if you've heard of the McGill pain index, that shows the degree of pain for different diseases, rsd is at the very top. It's an unfortunate disease, someitmes it's reversible, if it's caught early..I know mine wasn't. Right now my doctors are trying to control the symptoms.I'm going to do the trial for the spinal cord simulator.There are alot of websites out there for rsd..some of the info is not very good though...please message me if you'd like to talk more of this...I'm out on disability now, so I'm home most of the time...take care   lol  Tresa47

[Toomanyadvil]

Defenitly not dunb, I didnt know what it was until it was mentioned here a few weeks ago(infact, there are alot of thigs I've never heard of until I came here)
If I'm thinking of the same thing..RSD- Refelx Sympathetic Dysrophy.

I agree with all above about possibly having Fibro and think you should get a second opinion. Were you going to a rhumatologist for all he tests? If so maybe going to see a different one will help get you an answer and the right treatment. I've found that sometimes one DR isnt able to see the answer and another can.
It sounds like your symptoms are really getting to a point where your not able to cope with them, so dont give up. Hang in there and keep searching. I know how frustrating it must be for you to have to deal with these awful symptoms and have no answer.
Let us know what you are able to find.

TMA

[Melissa70817]

Not to sound  dumb bur I have no idea what RSD stands for, can you let me know?  The symptoms you are speaking of really do sound like Fibro and when I first was diagnosed with Fibro I didn't have ALL or even half of the symptoms but believe me, they have progressed to the point that now I have EVERY one of them.  I hope you can find answers soon...having skin pain is no easy task to live with.  

[ChitChatNine]

My daughter had two bouts of RSD over a period of 3 yrs .. she had swelling in the early phase of it with loss of range of motion, too.  It was pain beyond belief that nothing would relieve.

HAve you had a thyroid panel done along with your other tests to be certain you aren't hypothyroid?  Just another thing to throw into the pot.

Cheryl

[Mollyrae]

Thank you for your response. I have thought about FM but don't have some of the symptoms associated with it. The Dr. mentioned it but due to some of the missing symptoms has not checked for it. I will see him in August and will discuss both FM and RSD. According to others with RSD it sounds more like what I am experiencing.  Other comments are welcomed.

[karen717]

I don't have RSD, but I have some of the same symtoms you do at times. Have you researched fibromyalgia? When all those tests show negative, it makes one wonder about FMS because it is diagnosed in part by eliminating the things you said came back negative. It might be something to look into. Also, check out the fibromyalgia/CFS forum on this site. Good luck at getting a diagnosis and I pray it is not fibromyalgia or CFS. Keep us posted.
Karen