I think I posted in the wrong place before, sorry about that.
I've had RSD for about 4 years now, and was recently diagnosed with Fibromyalgia as well. I have had a rough ride for the past 4 yrs, but recently it has gotten much worse. I've seen countless specialists and been on a few support group sites, and it seems I've heard so many different views on how RSD really works. Mostly a disagreement from people who actually have RSD, and doctors who treat it. I've had upper extremities RSD for most of the 4 yrs, both caused by surgery. One was a spread from one side to the other after surgery on the opposite side.
I've recently developed severe pain in my feet/ankles & calves, with sharp stabbing pains in my calves, and the burning pain in my feet/ankles & calves. Then my feet swelled up to twice their size, and they haven't gone down since. The tops of my feet are raised up swollen and my ankles and calves are swollen severely. Needless to say they hurt like crazy.
I became very worried about the swelling as everyone was telling me there were serious reasons feet and legs can swell, so I finally decided to go to the ER and find out what was going on. The doctor there did a host of tests, blood tests, urinalysis, EKG, Chest Xray, tests for blood clots, kidney, liver & heart problems, tests for thyroid, and diabetes, pretty much everything was tested and everything came back completley normal. So, in the mean time while waiting for some tests to return, the doctor asked me why I was on so many medications. I told him I had RSD. Now here's the good part. He said, "what's that?" no kidding, in 2007 with millions of people suffering terribly and their lives pretty much gone as they once knew it, here is an ER doctor who had no idea what RSD was, I said they now call it CRPS, nothing, he didn't have a clue. This to me is very, very upsetting. This to me validates the fact that RSD is not now, still, getting even close to enough research or press that it so deserves. Just go on the internet and you will find site after site after site that has people who suffer from RSD, and many who suffer from both RSD and Fibromyalgia. To find an ER doctor who has no idea what that is, is very sad to me. This was a very nice doctor, don't get me wrong, very plesant, great bedside manner, he knew I was very concerned and scared that my feet and ankles were so swollen and he tried his best to ease my mind that there was nothing showing up that was "serious" that was causing it. Of course he could not tell me if it was or was not from RSD, he didn't even know what RSD was. He told me not to worry and although he could not find an answer for me, he was not worried, and I shouldn't be either. Well, I felt very relieved that I didn't have a heart problem or other internal organ problem ect, but the fact still remained, my feet were as big as elephants and hurt like heck.
So, next I went to a health food store and bought a natuaral diuretic and I used those tight stockings, both of which did nothing, the swelling continued, actually I think the swelling got worse. This swelling, I might add, just came out of no where. 1st my feet began to hurt real bad, like I had been standing for 3 days or something, but I hadn't, then suddenly they swelled up like balloons.
Needing to get to the bottom of this, I asked many on my support group if anyone had had anything similar happen, and of course many did, I asked these people who have RSD and who better to ask. I wanted to know could RSD just jump and spread to the lower limbs? Well, they said absolutely, and it had happend to them and still was happening to them.
But then if I asked a doctor, they said , oh no, it just doesn't spread like that. It just can't spread from upper to lower for no reason. Conflicting stories here.
I then went to another specialist, showed him my feet and ankles and said I believed that the only answer was that the RSD had to have spread to my feet and legs. When I 1st had the RSD in my upper extremites I had sever swelling and still do often times. What else could it be? Every test had rules everything else out, and many had told me they had this happen to them. I was supposed to have back surgery a while back, but they refused to do it because of the "extremely high risk of spreading the RSD to the lower limbs" so they were saying that yes it can spread to the lower limbs, of course they probably meant because surgery was invasive and could cause it because of that. But this specialist I recently went to say, no way, RSD just can't spread that way. I said well then what is causing it because everything else has been ruled out. He really never gave me a straight answer I don't think, but after examination and a long talk he told me that I now also had Fibromyalgia to go with my RSD. Oh joy.
I said well can Fibro do this to my feet? He said no. I expressed that the many people I've been in contact with on RSD sites have had just that happen. They have had upper extemity RSD and then out of no where they now have lower limb RSD and swollen feet ect. And what about the many, many documented cases of people with full body RSD? They are out there. A few on the site I go on a lot. I couldn't imagine full body RSD, but even according to the RSD organizations, there is full body RSD. Although not the norm, it happens nonetheless. So, why would this doctor refuse to say my swelling and pain in my feet and legs was the RSD spreading? I don't know, but I really, really need answers. I'm desperate for answers. When you have something that you got from a simple surgery and it is something you've never heard of in your life, and it basically changes your life, you tend to want to know as much about it as you can. Especially when they tell you, there is really no cure, really no real one treatment, and you most likely have this for life. I did a lot of research, and every thing I read, rather a book or online stated that indeed RSD does and will spread in many cases. Some just from one side to the other, as mine did pretty fast, and some that spread to unusual areas, and some that spread to the lower areas, or upper from lower, ect, and some, not a lot, but some end up with full body RSD.
Okay, so this is what I know from reading and reading and reading. But, the doctor I am currently seeing will not say that this is something that can happen.
I suppose my question is, can RSD spread from the upper limbs, to the lower limbs? I do have nerve damage in both my feet from a back injury and a fall that demolished one of my feet when my back went out and I fell and twisted it, stepped on it backwards, because I had no feeling in my feet after sitting for a short period of time and when I went to get up, I had nothing there to support me, so down I went, but that was years ago and I haven't had any problems with my feet after the badly damages foot I thought healed, it was supposed to have surgery immediately, but the insurance company refused to authorize it, so sat in a cast for over a year and finally just took it off and said forget it. So, until this out of nowhere pain and swelling came, I hadn't had any problems with my feet any more. I have heard that RSD sort of feeds off of nerves, so it made sense to me that the RSD could have hit my feet.
But I will ask, can RSD spread from the upper extremities to the lower out of the blue,? and can it cause severe swelling that I have had in my feet/ankles/calves for months now?
I've posted to a few other sites, but no one ever answers, its so frustrating. I just want to know what I'm dealing with. I now have to find out what I'm dealing with with the Fibromyalgia, although I had been reading that, that was something that often happened with people with RSD, so I wasn't extremely surprised to be told about it, not at all happy news, but at least I was given a reason for some of my symptoms. The swollen, painful feet, I can't get any answers, from my current doctor anyway. He is supposed to be a specialist, but how can I take his word for this NOT being RSD, when I've heard so much to the contrary?
If someone can please answer and tell me for sure what they think is going on, I would be so thankful and it would so greatly appreciated.
Hoping to hear from someone soon, thanks for listening and sorry this was so long.