RSD/Fibro? severe swollen/pain in feet/calves. Can RSD spread from upper to lower limbs? please help me here!

[findacurenow]

I hope someone will respond to my post. I seem to post on so many sites and no one ever responds.
I have had RSD for about 4 years. It started in my upper extremities & spread to the opposite side. I got the RSD after a surgery I had. I was diagnosed pretty fast, then diagnosed again by at least 9 different specialist again. I was then diagnosed recently with Firbromyalgia.
In the past few months my feet have swollen up to balloon size and they hurt badly, and my calves also swell up and are very tight and I get sharp stabbing pains in them, along with the burning pain in all areas. The tops of my feet are so swollen they feel like tight thick rubber bands are on them, and my heels feel like someone took a hammer to them.
I have gone to the hospital and had every test done that I can think of and everything has been ruled out as the cause of the swelling and pain. No heart, liver, kidney, thyroid, lung, diebetes, ect nothing came back abnormal. I asked the doctor if the RSD could have spread to my feet/legs, but unbelievably he did not know what RSD was. That was a shocker in it of itself. So, he sent me home and said I was all clear for any health problems and not to worry. Well, that's all good and I'm so glad I don't have any health problems that show up, but the fact remains my feet are not going down, the pain is still there, and I have no answer as to why.
My question is, can the RSD have spread to my feet/legs, from my upper extremities? All the people on the support group say absolutely, but another doctor I saw, said no, RSD doesn't spread that way. Well, I don't know how these people ended up with their RSD in all different areas if it "can't spread that way."
I need to find out what's going on. Can RSD spread to the lower limbs out of the blue? It spread to my other side on the upper extemity that had no injury for no real reason to do so, so why couldn't it spread to my feet /legs?
I have a bad back and nerve damage in my feet, and I've been told RSD feeds off nerves so it seems to make sense that the RSD could spread to my feet, but I can't seem to get a doctor to diagnose that. Although I am not able to really see too many doctors as I have no health insurance. I already now have a huge hospital bill because I couldn't stand it any longer and had to go and at least rule out any heart kidney ect problems, which was done, thank God.
I then went to another doctor for a consultation since the hospital doctor did not know what RSD was, and instead of getting the diagnosis I needed for my feet, I was given the new diagnosis of now also having Fibromyalgia to go with the RSD. Not really what I wanted to hear, and I still have no answers to what's going on with my still swollen still painful, still exact symptoms of RSD as I have in my upper extremities.
If anyone out there knows anything they can suggest, or knows of RSD spreading to the lower from the upper areas, PLEASE post. Or even any suggestions of how I can find out what's going on here. PLEASE post.  
Sorry for the long post. I need answers, this is nuts that I just sit here with so swollen feet that I can't wear shoes, or really walk because of the pain, and so painful that my pain meds don't really work, and no one wants to tell me why.
ANY posts would be greatly appreciated.
Thanks in advance.

[LLWB]

I also don't know what RSD is, but I know a lot about fibromyalgia. Itdoes not cause the swelling that you have. It does affect the nerves, and can cause pain in the legs and calves, etc. Do you eat a lot of salt? In this heat this summer, I notice my feet and legs swelling a lot more than usual. I hope you can get some answers, I know I didn't help much, but wanted you to know you're not along out here in cyber-space. Good luck.

[findacurenow]

Thanks alo for posting. Its so frustrating, I've posted in so many places and no one seems to answer. RSD is pretty much almost the same thing as Fibro, but it does cause swelling, and it spreads. Its caused by trauma, in my case surgery, from what I've read it is very similar and most who get RSD end up also getting Fibro for some reason. RSD causes severe nerve pain, and I'm finding out so does Fibro, but I just can't get anyone to say whether or not they had their RSD spread from the upper to the lower area of their body. I know it happens but sure would like to hear from someone who has had it happen to them.
I don't eat salt at all, never have, and I live near the coast and we've had an usually mild, and even cold summer, so the heat I've kind of ruled out also. I know my feet have swelled a lot when it was hot outside, but just can't blame this on the weather this time. And its been months now and its just not going away even a little. Also the swelling seems very different than the regular "too hot" feet swelling. When I've been in a hot summer for awhile my ankles would swell up, but this is just different, the tops of my feet are real swollen to where I can't even put sandals on, and it seems weird but even the bottoms of my feet seem swollen, and tight, & of course my ankles and calves also. Its just hard to explain, but its different than the too much heat swelling.

I actually know a lot about RSD and very little about Fibro, but the little I've read it appears to be very similar, symptom wise anyway. I just can't seem to get anyone to answer about this swelling and spreading of the RSD from an upper limb to a lower limb.

Thanks again for taking the time to post, I really appreciate it. :)

[Keephopealive]

Here are two websites that will help:

http://www.rsdhope.org
http://www.rsdfoundation.org

It's very important to find a doctor, such as a pain management specialist or neurologist, who knows about RSD. Yes, RSD can spread and has a mind of its own. Usually, the spread is up the limb or to the opposite limb, but another type will spread wherever it pleases. I've had fibro for years and the pain is primarilily muscular. I've had degrenerative disc diseases (two back sugeries) for years. I've managed the pain of both well, However, I've never had any disease as strange as RSD, which also can cause systemic changes (increased blood pressure, heart rate and hot flashes, to name a few).

Knowledge is power, but it's still important to check out all neurologists and pain management specialists in the area.  In the early stages, sympathetic nerve blocks might actually cure the disease. However, even if the disease can't be cured, there are ways to obtain symptom relief -- if the doctor knows what she/he is doing. Just keep on truckin' until you find an expert. Good luck!

[Keephopealive]

My legs are doing the same thing. And fibro has never caused me redness and swelling. I will let you know what the pain specialist says when I see him next week.  :)

[masarwa]

Hello its sad that you are going through this i have been diagnosed with RSD for 3 years the answer to your question is Yes RSD can spreed to others side of your body. I have 8 doctors i have seen Nerulogist/Ruthmotalogest/enstiulalogest/pain med doctor/therapy/phic doctor/or tho doctor/QME/IME.
they all told me the same. I have tried all med and blocks.SCS. RSD has changed my life i lost my house my friend my family and my self. the pain is always with me i live with RSD. and i know what you feel don't give up are you in CA. i have a very good doctor if you in San Diego area look for DR Franklin Kozin he is the best in CA. read about him he also was my QME. what med are you taking
for pain and etc...Good Luck

[masarwa]

RSD can remain localized to one region of the body indefinitely. In other cases, it can spread to other regions of the body spontaneously or by trauma to other regions of the body.

For example: In this illustration, RSD has spread spontaneously to the opposite upper extremity and to the lower extremity. RSD of the upper extremity can spread to the face causing problems with hearing and seeing. Also, RSD of the upper extremity is sometimes associated with difficulty in swallowing. RSD of the lower extremities can be associated with bowel and bladder problems. Thus the term Total Body RSD has evolved over the years as we learn more about this disease.

[patsy10]

I think like fibro, very few doctors will know anything about RSD.  So I would not be surprised if they don't know what it is.

[julie218]

My experience echoes so many here.  Misdiagnosis, ignorance and mistreatment.  What I have discovered is that it is very likely my autoimmune response to an innocuous injury.  Having contracted reactive arthritis when I had salmonella years ago (a reaction gainst the food poisoning),and apparently my longstanding seb. eczema is a belated reaction to cradle cap as a baby.  All these things store themselves away to come and hit you later.

Thus I am really concerned that the RSD I have had in my right arm since March 2008 appears to be travelling along my shoulders and 'pulling' on my spine.  No one will listen...has anyone experienced this particular kind of travelling pain?  I am so scared.
(I am on tramocet, amytrypilin and pregabilin -Lyrica)