RSD Questions
 

Hi All,

I can not seem to find an article which actually breaks down different people and their symptoms of RSD.

The reason I'm looking, is because two doctors have ruled out RSD because my left arm is not showing signs of color change (although it does get quite red easily). I have visible signs of poor circulation, cold palms, sweaty sometims (not all the time) in my hand.

My arm is swollen stemming from my elbow region (where I was stuck with a needle over a year ago by a Phelbotomist) to my forefinger, right up to the back of my neck. Even under my arm...I was starting to get pain and looked and found a vein popping out. My arm has been swollen for about 8 months now. I get burning flesh pains...you know, like someone is holding a blow torch to your skin!!!!!! I have definate signs of muscle weakness as well.

So even though my arm isn't blue and I'm not constantly sweating...is it possible for me to have it? Not that I want it...but without knowing what exactly it is...it's kind of difficult to treat. The symptoms I have had for over a year indicate I have most of the RSD symptoms listed, so I believe this diagnoses would be the most accurate.

Any thoughts? Your input would be greatly appreciated.
Also, if anyone knows a link or two to documents that suggest RSD can be present without color change or skin abbrassions, please let me know.

Thank you so much friends!!!!!!

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!:hug:

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.

:hug:

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:confused:
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:hug:

Hi Vic,

Thank you for this information, it is very helpful. I am going to print your post out and bring it to my doctor if you wouldn't mind.

This makes perfect sense to me!

I have just received records from the Neurologist from my visit in June.
He stated in his report that "it is not obvious that it is a neurolgic problem". But continued to say "My sense is that there might be damage to one of the tendons in the elbow that occurred durring a blood draw in September."(2006)

Then my MRI report says: "There is no evidence of fracture or bone bruise. there appears to be a very small joint effusion. Overlying tendons and muscles appear intact".

I have just read that join effusions found in MRI's are classified in being early signs of having RSD. Again, I think the signs point to me having this.

Thanx again Vic, your post has been very helpful indeed! Good luck to you and your new posts which you are planning on submitting. I am eager to read them!


Tayla,

It is very nice to have your support and input on this issue.
I wish you well and hope that you find peace with your autonomic nervous system soon.

Thanx again!

Melissa:hug:

It would be wise to see an RSD specialist ASAP. This disease tends to become chronic if not treated within a couple of years and the clock is ticking.