RSD HAS ANYONE HAD RSD IN THEIR FEET/CALVES WITH SEVERE SWELLING & PAIN? PLEASE REPOND, NEED ANSWERS BADLY.

I have RSD & was recently diagnosed with Fibromyalgia also. Recently I believe the RSD has spread to my feet/ankles & calves. They are really swollen and are not going down no matter what I do. Its been months now & no change. I don't eat salt, had every blood test & every other test done to rule out any other cause for the swelling and everything was normal. I don't live where its hot, so the heat isn't causing it, its been very mild this summer, no real hot days at all.
Now one doctor says it is the RSD spreading to the lower area, (the RSD started in the upper area) but then another doctor said RSD doesn't spread like that? I know it does spread, it spread on my upper area from one side to the other without a doubt, and does spread to other areas that don't make sense, but this other doctor says it doesn't. Its very frustrating to have so many different opinions on things. Would love to hear from someone who has had their RSD spread to other areas that don't make sense. And, if anyone has severe swelling in their feet/ankles & calfs from RSD??? Or had another reason that might not have been thought of yet? Although they've done so many tests and everything was normal?
And if it has lasted a long time, and if it ever went away, at least the swelling part?? The pain I know all too well, with RSD really never goes away, but the swelling is horrible, if that would just go down I would be happier. I've lived with the pain & other symptoms of RSD for 4 years now, so I handle that part, with many meds, as best I can anyway, and now that the Fibro has been diagnosed, that give me answers to other pain spots I have.
But, I've been told he Fibro won't cause the swelling?? The RSD can?? But can't get an real answers or more than one doctor agreeing with the other. I've been trying to post on the doctor question side of this site for awhile now, but it keeps saying the questions for them are full? Does anyone know how to get a question in on that side of this site?
Help. Anyone have similar symptoms?
Please post! Please! Seems like everywhere I post, no one answers, sigh!

[holly56]

My husband has suffered RSD in his upper limbs.  It took a long time before we finally found an MD who seemed able to work with him successfully on it...it turned out to be an anesthesiologist who is also a pain specialist.  You might seek one out in your area for advice.  Good luck!

[LeoLady]

My husband has suffered with RSD in his upper extremeties since 1994.  The disease spread from one side of his body to the other.  The last couple of years he has had unrelenting swelling of his legs, ankles and feet for months at the time before going down.  We believe the disease has spread to his lower extremeties as well, all though the doctor keeps telling him he is retaining fluids.  The doctor put him on a fluid pill but they don't seem to offer any relief and then they will go back down to somewhat normal maybe for couple weeks and then they will swell back up again.  We haven't been able to attribute the swelling to anything buy the RSD.  Pain is being controlled for the most part with Ice and a barrage of pain meds.  Best of luck, don't let them fool you it's RSD or possibly could be your heart, I assume you have already ruled this out, I have done too much research on RSD and I myself have Fibromyalgia (since 1995), so I know both these disease very well.

[sufferinghere]

I fell three years ago and fractured my knee cap and tore tendons and ligaments in my elbow(badly) and hit everything on my right side. For the first year I simply had severe pain in my elbow and  received three injections with steroids which helped briefly. Out of the blue the pain stopped but returned unrelentingly six months later, it has not stopped since. Anyway a few months after the fall I began having periodic swelling in my leg, hip and lower leg. Not really any pain at that time but a few months after, my hip bone began to get larger and my clothes would not fit normally. I went to my internist who gave me an injection which did nothing. After that I saw an orthopedic surgeon, who I knew and he could not believe the change in the right side of my body. When I saw him my leg was hugely swollen. He thought I was in heart failure and sent me to a cardiologist, but before I left he injected me with three steroids and lydocaine. NOTHING!!! Shortly after this I began having extreme pain in the entire leg, feeling like my femur and shin and ankle were broken. My hip continued to enlarge and I saw the cardio. and had a full workup. NOTHING!! Now here I am in constant search on the internet for answers and the only thing I can come up with is RSD. I am experiencing anxiety, depression, even my face looks like I am ill. My clothes no longer fit and I spend much of my time at home in pj bottoms because pants hurt my leg and just cause more swelling and I have bought shoes a size larger than I wear just to accomedate the one side. This is devasting to me, I am a size 3 and now I have gained about 15 or more ponds and my latest dr. has sent me to a vascular dr. to have the leg wrapped and to neuro. However, I don't see how this will do a thing for the way my bones feel and are enlarging. I also have a swollen abdomen which is never a problem for me , I was an avid walker and did a lot of floor exercises but am now unable to do anything, my leg feels like it's being held together by rubber bands. The orthopedic dr. said I had about 10 or 15 pounds of fluid in my leg.I am scared to death at this point, as I am worsening daily. Haven't seen the other doc's yet. Am living on huge doses of prescription pain and nerve med's to no avail. Are you having any of the bone problems? How about the belly? I feel so isolated and was thrilled to see someone with the lower leg swelling. Oh, and my skin is different, plus I am breaking small capillaries as a result of the constant up and down of the leg. Although it has gotten pretty steady now. UP!!!Sorry, this is so long but after all this time alone I would love to converse with you.PLEASE WRITE BACK IF YOU ARE STIILL ON THIS  SITE!!!

[nanny_maroon]

Hi there,

I have the dreaded RSD full body. It does spread, however you will find doctors who think that it doesn't happen often and others who believe that RSD exists at all. Both doctors are in the dark ages. Some of these doctors are even in the pain profession (more likely to be the ones who think it doesn't spread that often).
The neurologist & even vascular surgeon should be aware of RSD aka CRPS as it is a neurological condition and it does affect the vascular system. Is the swelling fluid? Some people swell more then others, some swell like they have Lymphodeama and others just like a new injury or an old healing one.
Hopefully the neurologist and vascular surgeon can help you. If not ask for a referral to a pain specialist.

Send me a message if you would like the name of any good websites with reliable information. I run my own RSD/CRPS forum as well.

take care & try not to stress as it only worsens the RSD.

Fellow sufferer

[kitkatdls]

i was just dx'd yesterday after suffering for 2 1/2 years. I suffered a fall at work injuring many body areas: shoulders (slap and rotator right side), meniscal tear right knee ( surgery 11/07 failed). cervical disk injury with pinched nerves, and lower and upper back. I can go on and on. I was dx'd with Manic Depression and Bipolar Type II the first year mainly because no one would listen. They said I was mentally desturbed. Yeah! My work comp adjusters gave me nightmares because they did not see anyway I could be still sufferring from my injuries. I could go on and on. Yesterday, I through faith found the doctor of my dreams Dr. Neil Atlin of Dallas; TX. I have a chance to live again. Everything makes so much sense now. My neuro. and immune sytem went crazy. I was dx'd with Seizures and so forth. Please wish me well as I do to all out there. God Bless and Keep You!

[kay71]

I've been dignoised with rsd for 2 yrs after a spinal fusion. I have one Dr. that doesn't believe it spreads but to one side, while the neurosurgeons said rsd has spread full body. I can't understand why the one DR. keeeps telling me It isn't fullbody when I have the same burning devasting pain every where and also now my whole body stays modled and purple. Looks like he sould see the signs and learn more about it.  I know how it is to get so many different opinoins. Kay71

[midnightdoc]

My brother-in-law was diagnosed with RSD. He broke his lower leg in half several years back and the swelling and BAD itching keeps him up at night. He eats about 5 or 6 xanax a day along with hydrocone 7.5 and they don't faze him a bit. Good luck to all of you that have this. He like y'all are suffering way too much. God Bless.