Hello,

While nobody "wants" to have RSD, yes, it would be helpful in treating it.

I do not have any signs of blue extremities. I don't have issues with sweating at all. But, I have RSD. Just because you don't have the above, doesn't mean you don't have RSD.

Mine is red - like a burn on my arm and has red dots. I also have this starting to spread in my other arm.

I would go see a pain specialist. They may be more informed of specific pain disorders. When I first started seeing this after surgery, my IM doctor said that I just need to live with it. When I told him that another doctor thought it was RSD he said that he'd never seen this disorder in his 25 years of practicing. You just haven't found the right person..

Good luck - and for your sake, I hope you don't have this because it really sucks.

Thanx, I hope not either. But after a year of symptoms and numberous doctors I wish it were something so I know exactly what to expect!!

I'm going to the doctor on Thursday, I'm going to ask him if he can refer me to a good pain doctor or someone who can determine if this is RSD or something else.

I have a feeling it is though...because I've ruled out everything else I could find. Ho ho hummm....

Thanx again!

Hi,

Well RSD is often a clinical diagnosis of exclusion - if nothing else is a reason for the symptoms then it is likely to be RSD. From what I have read you don't need every symptom in order to be diagnosed with RSD and thus not having full colour changes or full sweating doesn't mean that you don't have RSD. I would get properly evaluated by a pain dr who knows about RSD. Are you in the US? If so then it might be worth ringing around the pain consultants and asking them to find one who is good with RSD and who has experience treating it.

Good luck and I hope you find some answers soon

Rosie xxxx

Thanx Rosie,

I'll be talking to my Arm/Hand Specialist on Thursday, I'll ask him if there is a Pain Specialist around that he could suggest. So far this doctor has been very eager to help, but if this RSD he might not have the experience necessary to lead me to recovery. (Hopefully) Or at least stop it from spreading...

So frustrating. I just want to know when I wake up in the morning my face wont be swollen, my arm 10 times bigger and I even fear, sometimes, that I wont wake up at all.

It's so difficult to live like this...the pain, the things I want to do I can't seem to anymore.


I'm in Massachusetts, I dont know if there are any options for me. If anyone here can recommend a good RSD doctor in Massachusetts, I'd be most grateful.

dealingwithtos,

I hope you can stop the spreading of this aweful monster!

Good luck and thanx for your suggestions.

Hi,

The reason those two physicians want to exclude RSD because your arm isn’t “discolored” is simple and complicated at the same time: It’s simple because physicians who have treated RSD patients know that cyanosis is the most common objective sign of this disease. It’s complicated because cyanosis isn’t mentioned in any list of signs and symptoms of this disease. The word literally vanished in the late 1940s, after researchers proved that it isn’t caused by abnormal SNS vasoconstriction.

I have written about the reasons for this in previous posts, and will have more to say in a series I plan to begin posting in a few weeks, but for now I’ll limit myself to saying that there is a very good reason why those two docs you saw want to see cyanosis, and there are good reasons why it sometimes isn’t evident in RSD.

Cyanosis means that blood in the capillaries closest to the skin surface don’t contain adequate oxygen. Arterial blood isn’t flowing through the capillaries the way it is supposed to, and the oxygen has been leeched out of it. Capillaries below the skin surface will also be blocked, but we won’t see cyanosis.

Most RSD results from trauma to the skin surface, and we can expect cyanosis to spread over the skin surface as the RSD spreads, In cases of fracture, some ligament injuries, needle injuries, etc, the injury occurs below the skin surface and may not spread to the skin. Even some skin injuries may not present with cyanosis.

So, while cyanosis is common, it isn’t essential to diagnose RSD. Hyperhydrosis is much less common than cyanosis, and its absence should never be used to exclude this disease.

I was diagnosed with RSD in 1995, and have spent more than ten years talking to RSD people on the Internet; most, but not all, talk about cyanosis. Physicians who have treated RSD patients expect to see cyanosis, even though “experts” who write about the disease never mention it. I believe that visible cyanosis without another explanation is proof of RSD, but absence of cyanosis doesn’t mean it isn’t RSD.

Nobody wants this diagnosis, but I think we all understand what you’re going through; you want to know what it is. If it is RSD, not being properly diagnosed just makes things worse. Perhaps you can talk to one of these docs and help him/her understand that visible cyanosis isn’t essential. I hope this helps you sort things out a little…Vic

Hi MMoran.

I would be concerned about a doctor who is basing a diagnosis of RSD on the presence of cyanosis as it is not necessarily an early sign of the disease.
More often than not it is a swollen ,red and sweaty limb that is presented.
I have never had a doctor who was concerned whether I had cyanosis at all
It is only now after a decade of the disease am I showing cyanosis that isn't transient as I now have severe trophic changes due to continuing vasoconstriction due to an autonomic nervous system that has gone mad.
A more worrying sign of lack of blood supply is actually white skin.

Your description of transient changes is quite typical of early RSD and certainly not having ALL the symptoms ALL the time does not exclude you from the diagnosis and any doctor worth his salt should know that.
I wish you luck in you journey, lets hope there is another reason for your symptoms but please be reassured that even if this is your diagnosis there is still a good chance for improvement or remission if the correct treatment is carried out sooner rather than later.
Nice to meet you and good luck
Tayla