[Steff]

Hi- I do not have RSD. I have PN maybe, or neuropathy from prolotherapy shots. I had them injected into feet that had been operated on 20 years ago and started to hurt. Something went terribly wrong. It was the wrong procedure for the wrong person/pain. I now have burning, stabbing, pins and needles, no numbness pain in both feet, legs and up to my spin sometimes. No color or temp change except for one inch on my ankle where there is a growth of tissue and it feels a little warmer, but has been that way since day one of the injections. If I wouldnt have had the injections, I wouldnt be on the computer right now. It has put me in a wheelchair the pain is so bad. It gets worse to walk or to hand my legs. No change with temp or touch unless you push hard and then its awful.
So what do you think?
steff

[theoneRogue420]

Hi Steff,

Did the PN forum tell you why they suggested you post here? Not that we mind, lol, I'm just not sure what we can do for you. The symptoms of PN and RSD are similar, but if you don't have rsd, then it would be more helpful to you to use the pn forum, I would think.

Rogue

P.S. I answered the PM you sent me re: the other thread in medications.

[Vicc]

Hi Steff.

I glanced over at your first post on the pn forum, hoping to learn when you had these prolotherapy injections. It would be helpful to learn when they began and ended as the description of the prolo process involves inflammation, which is how RSD begins.

In RSD, the inflammatory stage can last anywhere from a few weeks to a few months, so knowing when your prolotherapy began and ended could be useful...Vic

[Steff]

i guess they are at odds to my horrid burning and maybe somethng that worked for rsd would work for pn or central pain

had foot surgeries 22 years ago. pain, not burnng, work travel etc. dealt with it. then last year i started to have more pain and had prolotherapy injections april 2006 pain was horrid and has stayed that way. crawled right up my body. stops at my waist.

[Vicc]

Hi again, Steff,

No one here is a diagnostician, but based this happening 16 months ago and you aren't reporting allodynia (painful sensitiity to light touch), or painful hypersensitivity to cold temperatures, I would doubt that it is RSD.

This is considered great news at this forum...Vic

[Steff]

light touch ? would that be like stroking my hand up and down my leg and it feels knives instead of a hand? or crossing my legs?
steff
i think the idea of posting here was to see if some relief any of you received from anything that sounded like my symtoms might be of use.
s

[Vicc]

Hi Steff,

I just had a major conscience attack earlier, and threw away a long reply that totally hijacked your thread. I'm a notorious hijacker.

I honestly can't think of a responsible reply. Saying anything beyond "I dunno" could be seen as giving medical advice, but that hasn't stopped any of us here; ever. All I can say is that you would be a real exception to the rule if your warm, red skin is RSD; 16 months is just too long.

These phrases aren't that common in the US yet, but there has been a trend in Europe toward talking about "warm" and "cold" stages of RSD. If this trend crosses to the US, it's going to lead to a lot more questions but no more answers. But the bottom line is that all of us have "cold" RSD.

If you aren't cold and truly do have RSD, I don't know what to say, except that "cold" is almost as common as "pain" and as "cyanosis" in diagnosing this disease. If you have all three, you most likely have RSD; the few symptoms, the lower the odds. After 16 months, just about all of us had cold (usually cyanotic) RSD.

But I write about what my research showed me is the most likely cause of RSD, and I didn't focus at all on diagnostic criteria: ever. It's possible someone wrote a case study of an RSD patient and reported symptoms of fever, or of a leg that burns and is totally paralyzed, etc, etc, but just about everybody agrees that people get better in the first few months (some say a year), and this corresponds exactly with the time when warm RSD goes cold. If your leg is still warm and red, I don't think it's RSD.

I have to tell you that those abstracts had my ******** detector clawing my back. I may be able to post some of my reasons for this, but I may not, so I will just say for now that I once had a friend who was a "real carnie" from the 1950s; when carnie was sort of semi-respectable, and my friend could cut right through the medspeak and show me the trick. I would check that stuff out on PubMed before buying into it.

All I can do is toss in the idea of a vascular surgeon, but only because I know how important blood flow is in RSD. If blood flow causes RSD symptoms, it could cause other symptoms. I don't know. My neurosurgeon refers to my recovery plans (for my back) as "clutching at straws".

I suppose that when all you've got left to clutch at is straws, you keep grabbing and hope you can find a way to make "straw-aid" taste good. (I'm not known for mixing metaphors, but I'm only human).

So I have to close as I began: I'm not a diagnostician. I am, however, fairly observant and have a pretty good memory. both are helpful in affirming my impressions over the years about the "really important stuff". I didn't learn that cyanosis was so common until I began meeting other people on the Internet. I never found the word in the RSD literature, but it somehow made me feel good to learn that my purple feet didn't mean anything truly awful. It's just RSD.

So now you know my bias and are better able to judge whether my advice is well-intentioned but wrong; or if I might have actually figured it out. I hope that somehow, this helped...Vic

[RSD_Angel]

I have both cold and Hot RSD... and i am in my 5th year of my RSD. My foot gets cold and blue/purple and yes i have severe pain... and then i can get hot RSD where it goes bright red and blotchy adn very warm if not hot to the touch...and yes i still have severe pain.. When i dont have bluish/purple color foot and leg i have red and blotchy leg and foot. I have a severe inversion of my foot as a result of RSD attacking my tendons in my foot and it is getting worse and i still go between hot and cold all the time..My doc said that its all bc of the RSD and it being controlled by the brain... it can go from one extreme to the othere and happen in mins. I also as you konw say a vasc surgeon and he said the same thing!! its a total trade mark of RSD!!!!

I think you are VERY wrong in what you said that if you have hot RSD that you prob dont have it..how can you say that when alot of us on this board have this same stuff going on.. and tell it to a newbie too... come on!!

~Amber

In fact.. at the top of the board theere is a link with pics of RSD... there is one of my foot and leg when i was haveing HOT RSD and was warm to the touch..i will post a pic of my blue and purple foot just to prove it that i have both.. and alot of us do also!!

[Steff]

i guess i do not have rsd then
i just hoped that some of the therapy/drugs you used might give me ideas to take to my doc to help my burning pain
vicc-i think you are saying you do not know what is going on-or i just dont get what you are saying at all
hijacking my post? what does that mean?
the p and n board has given me many sites to look at, but other than that
there has been little or no response
i will try them again
thanks steff

[Vicc]

Hi Amber,

I expected flak when I wrote that, but not a sense of outrage: I think you are VERY wrong in what you said that if you have hot RSD that you prob dont have it..how can you say that when alot of us on this board have this same stuff going on.. and tell it to a newbie too... come on!!

I qualified my conclusion several times, making it clear that I was offering my opinion and that my opinion reflects a bias that isn't shared by many here -- yet. I'll keep trying to push my view because I think people will get better if they only take the time to learn a little bit about ischemia-reperfusion injury (IRI). I can't think of a better way to spend my time and energy than preaching this gospel.

It's ok to offer an opinion here, and when someone disputes it, I see that as an opportunity to clarify what seems to be in dispute. The European trend toward talking about warm and cold RSD isn't all that rigid; some authors talk about the warm/cold RSD you describe, but its pretty obvious that while this does exist, the majority who talk only about warm and cold RSD are probably including the warm/cold group in the group they refer to as cold.

By saying that the bottom line is that all of us have "cold" RSD. I was putting myself among those who believe that when RSD turns cold, it enters a new and much more difficult to treat stage; that even if one alternates between warm and cold, it is the cold that defines this new stage.

I mentioned cyanosis and pain as other "really important stuff", and could have added allodynia, impaired hair and nail growth, and to a somewhat lesser degree, patchy osteoporosis and hyperhydrosis to that list. The more of these symptoms you have, the greater the possibility you have RSD. When some of them are missing, the likelihood that it is RSD goes down.

I also pointed out that there is pretty much universal agreement that treatment during the first six months seems to offer the best chance for a successful outcome. A significant number of people report the onset of cold RSD, allodynia and the real burning sensations some time between the first six to twelve months, and the literature about the onset of cold RSD places it in about the same time-frame.

This could all be coincidence, but I don't think it is. I don't think so because my research has convinced me that RSD is an IRI, and this is exactly what one could expect of an IRI to skeletal muscle. I can't prove this; if I could, I wouldn't need to because I could post the research that proves it. All I can say is that it is much more likely that this is an IRI than it is a nerve injury.

Most of my recent posts involve showing how IRI explains every sign and symptom of this disease. And there are researchers who now write that RSD may be an IRI; just a tiny handful, but at least I'm no longer completely alone in saying it.

I decided to introduce the idea that people with RSD request a consult with a vascular surgeon partly because that is the specialty of the researcher who started me down my trail of discovery, but mainly because I think a few or them might get interested enough in the cyanosis to try to get to the bottom of what is obviously an ischemia. They seem to me to be the most likely candidates to connect the dots between these "two" disorders and break that news to the RSD world.

My doc said that its all bc of the RSD and it being controlled by the brain. I thought that idea had been totally discredited. You don't find much about it in the literature of the past 3 to 4 years, as the majority of the "experts" now seem more intent on finding it in the spinal cord. The idea that the brain played a major role was held by those who believed that the problem originated with damage to sympathetic nerves, and somehow the brain is/was reacting to misinformation by sending out bad instructions. There never was any objective evidence that this was/is what really happens.

If I were to pick "a total trademark of RSD", it would be cyanosis. That is (or damn well should be) a neon sign saying "vascular dysfunction". Except for RSD, cyanosis is something that must be reversed. They don't know how to reverse it in late stage diabetes, but they are trying to prevent/delay/reverse it because it is a sign that something is seriously wrong.

But unlike diabetes and Raynaud's Syndrome, RSD only rarely results in gangrene and amputations, so the "experts" have felt safe in ignoring it, and that's one of the few things they seem to do really well. They have been ignoring it for about 60 years now; ever since researchers proved that sympathetic vasoconstriction is not a factor in this disease or the cause of our cyanosis.

The "experts" back then chose to cling to the belief that someday the link between RSD and the SNS would be found, and they would ignore cyanosis until then because their neurological explanation just went down the toilet. I'm sure they thought that the proof would appear any day, but they're still waiting; and no one talks about cyanosis.

One reason for this reply is that I know I will never be able to explain all of the seeming contradictions of RSD. Anyone wanting to tackle that job is welcome to it. I think it is more important to focus on the similarites between RSD and IRI: Like the fact that both begin with a physical trauma.

It's unfortunate that the docs who know about IRI are mainly thoracic surgeons who will probably never see an RSD patient, and will never learn that cyanosis is the trademark of this disease. That's the one clue that might get them interested in looking into RSD.

I gave Steff my plainly labelled personal opinion about whether I think she has RSD, and I don't think that many here have gone further than I did to qualify my answer in so many ways. I am grateful that NT allows everyone to offer their opinion so long as is stays within the TOS. I believe I did that, and that my answer to Steff's question is founded upon sound science.

Steff, hijacking is taking a thread that talks about one thing and redirecting it to an entirely different topic. The reply I saved for another time contained a lot of what I just wrote in my reply to Amber. It has little to do with the question you asked and would have been inappropriate in a reply to you. It's not polite, but I have a habit of doing it.

It isn't hijacking when I put it in a reply to Amber, or if it is, everyone does it; threads here can meander in all kinds of directions and end up having nothing to do with the first post on them. That's just one more reason why NT is so interesting.

I wish I could offer some idea that might help you find your answer, but all I know about pn's is that some docs think that's what RSD is, and I think they're wrong.

I know I speak for everyone here when I say you're welcome to make this your NT home. We're pretty broad-minded here, and we know that pain is pain, no matter what the cause. Sometimes it hurts so bad we need to talk about it to others we know will understand. We understand. And we talk about other parts of our lives besides the RSD.

In fact, since my disabling pain comes from nerve damage in and at my spine, some could argue that I should be at the spiney or chronic pain forums. I do have RSD, thats been confirmed by a dozen docs, but mine is relatively mild. I suspect it is so mild because my "real" disabilities have limited my activities so severely that I never had a chance to really aggrevate the RSD, but I'll talk about that some other time.

Hoping you find your answers...Vic