Information is power. Share with them this site, rsdhope.org, and any other links and literatue you can find. I had a select few that were close to me as well who didnt know anything about it so there for "it didnt exist" type of deal. Once I shared the information they understood more and are no longer the "disbelievers" they once were.

Best of luck to you!

I hope things are going better for you and you are learning more about RSD to help yourself with it. We find on here the more we learn about the RSD the more we can find the right Drs., learn about new meds, and learn what comes with RSD that we have to help ourselves with.

As far as it being in our head, I believe we have all heard that at one time or another. I had a friend on the TOS forum and an Physical Therapist that helped me figure out what I was dealing with. It took me 3 years to get diagnosed with TOS and more for the RSD.

I have the best PCP and had the best PA I could have ask for but they had only had one case of TOS and RSD in their 20+ years each in medicine so it was a job to diagnose. My PCP finally asked me to get me a computer and help diagnose me. That was only after he had sent me out to about 40 Drs.

After my diagnoses then my TOS surgeon helped me to find the best Anesteologist and Hand Surgeon for my hand problems. This first hand surgeon I had who has now retired was one of the smartest Drs. I had ever seen. He was able to diagnose everything that was going on with me and it is too much to mention. He wrote a 3 page letter to my PCP telling him and making it pretty clear that it had to be delt with and how.

What I am trying to say, is that there are other Drs. out there that actually know more about RSD then PM Drs. I have not met a PM Dr. in our area worth his weight in salt but now I do believe there is one that was an Anesteologist that I am hearing nothing but good about so they are out there.

I honestly believe that PM Drs. deal with so many areas of pain that they treat them all the same. Wheather it's back problems, RSD, TOS, Arthritis, Rheumotoid Arthritis, MS, you name it. I think therefore they put us in the same catagory as the people with these other problems. To me RSD is something that the pain is worse then what comes with any other medical problem. There is even a scale out there that shows it. Someone might be able to bring that up for you.

I don't know how many times I have told my PCP that he doesn't get the pain that comes with RSD. Now the way he talks to me, I believe he does. He's helped me more then any PM Dr. could.

I guess what I am trying to say, if the PM Dr. don't or can't help you, look for other types of Drs. such as Anesteolgist that do blocks and some Rheumotolgist. I have not found a good Neurolgist but I have seen others on here say they have been helped by them.

Don't put your eggs in one basket. Don't give up on finding the help you need and don't let what some of the Drs. tell you go to your heart. It makes the stress worse and that makes the pain worse.

Good luck in finding that right help.

Ada

The first words in my reply on this thread were "I'm probably burning a bridge"; well, this time I may almost certainly be burning that bridge, and that bridge connects me to the people I care about more than anyone except my family.

I wrote things in my last post that I think should have caused most people to ask 'Are the experts we rely upon for accurate information about this disease actually lying to us?' But no one even hinted that they saw anything wrong in experts pretending that cyanosis doesn't even exist in RSD.

I asked you to imagine how things would be different if doctors who never heard of RSD were able to look it up and see cyanosis listed among the signs and symptoms of this disease. Do you really believe that wouldn't make any difference?

Instead, I watched this thread drop off of page one without a single comment. I'm forced to ask myself whether everyone here simply believes I'm full of ****, or whether taking this disease out of your life just isn't worth the effort of learning something about it.

I've felt this way before: At BrainTalk I wrote at least three lengthy posts about symptom migration. I talked about the science that shows that it is at least possible that oxygen free radicals (OFRs) play a role in this. I reported that taking the antioxidant grape seed extract (GSE) has almost certainly delayed any symptom migration in my life for ten years now.

I said even more: I reported that when I stopped taking GSE I developed all of the signs of inflammation in both arms and both legs within a few days. I said I couldn't prove the inflammation would have progressed to chronic RSD except by letting it happen, and I'm not going to do that, but that it is more than coincidence that the inflammation developed shortly after stopping GSE.

In the years since I wrote my first post on symptom migration I have read post after post written by people reporting that it was happening to them, that another limb had been taken by RSD. I have cried over that, then I would write another post about symptom migration, and then read more sad posts.

I don't compare myself to Dr Ignot Semmelweis, who tried to get surgeons to wash their hands; for one thing, he was reviled by the physicians of his day, while I am merely ignored, but I have some idea how he felt; knowing he had an answer that could save lives but knowing that no one would listen to him.

I'm not going to end up like Semelweis either, dying a broken man in an insane asyoum. At worst, I will die knowing I did all I could. At best, I will leave this planet knowing that my work made a difference in peoples lives. That I may be a bed-ridden cripple, but that didn't stop me from trying.

It's possible, but unlikely, that my words here will will leave some people feeling I've insulted them, and they might write replies telling me that the Forum doesn't need people like me. Enough posts of that sort, combined with no "attaboys", could drive me away. I don't even want to think of that happening and I'm sure it won't.

Meanwhile I have written thousands of words about the cause of RSD and feel that no one really pays any attention to them: like I'm pissing into the wind. You can't know how frustrating it is to know that you're right, but you can't find the right words to persuade others.

So, I'm not going to post a formal poll, but I would like to hear from others what you need to read in order to decide to take the time to find out if I'm right. It would be nice just to read that someone is paying attention, even if that someone isn't entirely convinced that I'm right.

If, as I suspect, the fact that I'm a lowly social worker arguing against experts simply outweighs anything I might write, I'd like to know that too. It probably wouldn't stop me from writing, but at least I'd know what I'm fighting.

I could understand that view, even though I've written so many words about the science supporting what I say, and made countless offers to email copies of research abstracts so you can see for yourselves that I'm not making it up. Maybe I'd just post the articles and definitions for the words I don't think most people would understand, so you could see for yourselves that I'm not peeing on your leg and telling you its raining.

I'm sure that some people here wish I would just sit down and shut up, but I probably won't do that. I would like some hints about how to make my message meaningful to you, however, because you may not believe it now but in ten years or so researchers will have proved enough to make it impossible to keep telling people this disease is the result of nerve damage.

Or maybe I'm just writing this post because I'm getting older, weaker and finding writing more and more difficult. That I'm asking for a couple of attaboys to just encourage me to keep trying. Kinda like a wife telling her husband that all she really wants is to know the he appreciates having clean socks when he needs them.

So call this whole thing a "Vic needs an attaboy" and then decide whether you really care whether I keep trying...Vic

Vic,

I appreciate everything you have written here. I do care I am want ing to be healed. I wanna know what causes it. I am thinking about going back to school to become a doctor. I dont know if there are any doctors that specialize in this but I want to look into it. DO you have any suggestions?

Dana

Vicc

Hey.... hope you are ok - or at least holding up ok..

Firstly, I read all your posts and really think about them - and try and fit your suggestions/ theory to my own personal knowledge of RSD and the medical theory of RSD (should be theories really).. However, sometimes you give me questions to think about, or points that I have to research and discuss with others before I can come back to you. - I have the equivalent of a US degree in chemistry and still tutor in it to first year uni students and many of my friends are chemistry/ biology/ biochemistry/ neuroanatomy students....

We all have posts that drop off the page - but, please, think! I have concentration span of a gnat and I know that others here haven't got the background in science that I have, or the opportunity to get hold of resources which can help understand certain bits. You have been researching this for 10 or so years? (that bit might be wrong) and are far more knowledgable about your theory (whether right or wrong) than we are, and it takes a while to understand it and how it applies.

I feel I would be doing your work, research and articles a disservice if I were to just skim read them and then not attempt to really understand what you are discussing - but unfortunatly with RSD I don't have all day. I have minute patches where I can work on understanding, where my vision comes together, my brain kicks in and I am able to become the girl I used to be - one that didn't struggle with how to spell "gone" (gorn) or what words mean or read the same page 4 times and taken nothing in. However this then means that it probaly took me a fortnight to understand what you said properly and to have thought about what I want to say... by which time NT has moved on. I think it would be great to set up a medical thread for this sort of thing so that we could all have time needed to understand your posts.

Also. Being honest. Many of the threads that you publish in tend to turn into "heated discussions" between A and yourself... and before you know it all the important parts of both your arguments have been melted down...... and in an attempt to stop the "discussion..." it is hard again to post about your ideas.

About the cyanosis - it is recorded in my medical records that I am cyanotic - there are pictures and other records to show that. I also have had dopleers and thermographies done which support this. In the UK it is used as part of the diagnostic criteria - I think. I know that their patient handbook has stuff about cyanosis in. It also makes sense in the context of hot bone syndrome/ osteoporosis/ skin problems and co-ordination problems.

It is wrong that doctors don't examine for cyanosis - or that they don't record it. Does your neurosurgeon? I was told that the cyanosis was why I had the blocks done.

Also, onto ketamine - I don't agree. I have been using it orally for 18 months and find it far better than morphine/ oxycontin/ pethidine/ fentanyl/ methadone/ and whatever other drugs in that category I have been thrown on for pain.

Please keep up your theories. Do you save these emails to your computer?

Also, have you tried a laptop tray for the laptop so you can work flat in bed? that's what I do alot of the time, and I then use dragon.

love and take care and thanks for all your thoughts

Froggsy xxxxxxxxxxxxxx

I suppose the conclusion to this is - I am here, thinking and listening... you talk about making things more accessible to others - the best way I feel we could do this is to have another sticky which included definitions for people unfamiliar with medical jargon, to give them the time and space to understand

Hi all--its been a while for me...this is very interesting. After the discussion re ischemia/cyanosis here, I went back through my pain doc's records. There are nmuerous references about my hands/arms being cyanotic or ischemic. with the associated reddish/bluish colour and decreased temperature, related to the RSD/CRPS. These findings are particularly documented before and AFTER the stellate nerve blocks. (after the blocks, the skin colour/temp changes improve dramatically, amd the pain is significantly reduced). Although I have not had a thermogram, my pain doc places special temperature pads on both of my hands, and records the temp before and AFTER the blocks. (warmer AFTER the block).

I am not sure why thermograms are not used more regularly here in the U.S. to help diagnose RSD/CRPS. There are many scientific articles that recommend the use of a thermogram to aid in the diagnosis of RSD, the International Reflex Symathetic Dystrophy Foundation, etc.

Another interesting thing I saw was the "rationale" for a trial Spinal Chord Stimulator--and that the literature shows that Spinal Chord Stimulation can help improve "microvascular circulation".

Although I am not as well-versed technically in chemistry, etc. as many of the other posters here, this ischemia/cyanotic aspect got me thinking...

When someone has a partially clogged artery to the heart, and the heart muscle is not getting enough blood flow to the heart muscle, the patient experiences "angina"---PAIN as a result of the heart being deprived of blood and OXYGEN in order to keep the muscle healthy and functioning properly.
If the supply of blood is "cut off" for a significant period of time, the heart muscle experienced permanent damage---otherwise known as a "heart attack". That portion of the damaged heart muscle no longer functions; it looses the ability to contract, due to scar tissue, and also the nerves cannot conduct electrical impulses properly across the area of scar tissue.

So, it kind of makes sense, as Frogga pointed out, that with RSD, and ichemic reperfusion injury as Vicc has pointed out, that the muscles, nerves and bones in an RSD patient will similarly be negatively affected. Skin, nerves, muscles and bones are all "organs" of the body which MUST have adequate blood supply and oxygen in order to maintain healthy intergrity.

As to WHY some doctors do not just come right out and label these colour changes and decreased temperature of the skin as a result of ischemia or cyanosis is baffling--these are "symptoms" of ischemia/cyanosis, and part of the diagnostic criteria for RSD/CRPS, if I understand this correctly.

Of course, as to WHY this phenomena occurs in RSD is the "mystery"!! But, it sure is an interesting topic!

Sincerely,

Brokenwings

I saw Vicc's post in the "Cyanosis" thread first and replied to it there.

Thank you very much for all the information.

Take it from a ditch digger; a rational man will weigh the evidence and examine the facts regardless where they originate.

I've certainly encountered some of this same prejudice in several areas.

It seems the more some people examine trees the less they become able to see the forest.

http://charityadvantage.com/MN_RSDSC...rfromRSDer.asp

Heather