Hello Trix

Just wanted you to know I do not think that some problems are caused by not using a limb. I have RSD full body, but started in my left hand and arm. I own a business that requires me to be active and use my hand. It was over a year of very hard work on my part and that of PT before I could pick up a cup of tea. I have dystonia in that hand that I also have to deal with besides pain. It still is wasting away, but at least I can use it now.. I do salt baths every night and work my hand under water. Nerve blocks have helped along with lidoderm patchs when I not in a flare-up. I also belong to an RSD support group, which helps me to understand I am not crazy. But RSD will do crazy things to you. Wishing you gentle hugs and sleepful nights along with less pain.


CAROSE

The statistic on reversing RSD if caught early has been told to me by the specialists at UNC Hospital Pain clinic, Mass General, and UMASS Boston. You can also find it in the RSD Puzzle link that many of you refer to.

As far as the crippling effects go. Pain causes disuse which causes muscle wasting, bone loss.... that is what we know clinically. I realize that people can have multiple issues. Dystonia is a seperate diagnosis.Most people who have RSD are not dystonic. I am sure that on top of RSD it is quite crippling. There is no solid evedence that RSD in and of itself is crippling. It is the pain that causes disuse. That doesn't mean I think people choose to become crippled or don't work hard enough. I have permanent bone issues and function loss. I realize that not enough is known and there may be new information coming down the pike, I hope there is. I just feel like with a newly diagnosed person it best to stick with what we know and then let thier journey unfold. Each of us have seperate complications but I am a believer in building from the universal truths of RSD. There a symptoms that every one of us has in common and then there are the " do you feel this?" " Does this happen to you?" symptoms that can vary or could be a completely seperate condition that gets lumped in. I think a lot of Doctors start attributing everything to RSD once a person is diagnosed. It happened to me with an autoimmine disease. Fevers, rashes, chronic swelling ad tendonitis....... I was told it was my flukey sympathetic nervous system, the swelling was the RSD............ years later someone looked in a different direction and found an autoimmune disease .Now I am on treatment for Lupus and those are under controll. I am back to the same RSD symptoms I had since I was 3.

Agree........ disagree........... all information is good and keeps a balance

Hi Mommyjen,

Your facts about Dystonia are wrong, it is RSD related. Hugs, Roz

http://www.rsdfoundation.org/en/en_c...uidelines.html

Many patients with CRPS/RSDS will exhibit some type of movement disorder ranging from strength reduction (78%) to tremor (25-60%) to myoclonus and dystonia.
http://www.emedicine.com/emerg/topic497.htm

The authors describe 10 patients with reflex sympathetic dystrophy that progressed to a multifocal or generalized tonic dystonia. The neuropsychologic profile was similar to that of other patients with chronic pain, irrespective of its cause. The distribution pattern of dystonia, the stretch reflex abnormalities, and the worsening of dystonia after tactile and auditory stimuli suggest impairment of interneuronal circuits at the brainstem or spinal level. Antibody titers for glutamic acid decarboxylase, tetanus, and Sjögren antigens were all normal.


http://www.neurology.org/cgi/content...act/56/12/1762

That was a good article but I stand by my original thoughts.
Your article points out that it is in extreme cases not typical. The article is not from a medical journal. It is saying what some patients describe as happening, it doesn't demonstrate it as a function of the condition or as a criteria for diagnosis.

I would be interested in reading more about the movement disorder connection if you have more articles. I have a strange gait that I always attributed to hving walked in pain and the favorinf subsequent fractures. The thing I find odd is that in my home where I know the floor and subtlties I can ambulate short distance with out my crutches or chair. If I go out of the house I am a stumbling mess. I also find if I am in the dark I am throwing my feet around with no idea when they will hit the floor.

Hi Mommyjen,

I have dystonia in my right limb, I do not consider myself a severe case though. It is a very rough SX of RSD. I have to take Valium for it. Hugs, Roz

There are many different types of dystonia caused by many different neurological disorders.
A small percentage of RSD patients ( actual numbers vary according to which doctor you ask or which article you read) have dystonia. Most people with RSD do not have Dystonia and most people with Dystonia don't have RSD.
Once again, another intriguing discussion

Trix, I'm so sorry to continue the diversion of subject in your thread, but I feel that if a poster submits misleading and frightening information, it should be addressed.

I've split my post in two.

Tayla - I think it's fairly obvious, surely, that dystonia as it relates to RSD is being discussed here, not dystonia in general. Some of us are pretty bright and well informed actually, even if we're not nurses...

Mommyjen -
All good information is good. All incorrect information is dangerous, specially on a medical support forum. I can't see the balance in you coming out with sweeping generalisations, red-herrings and out-of-date information and then, when you are gently supplied with grounded information that challenges your claims, you shrug and go "Hey...whatever....".

You will be challenged, however, on a forum where everyone's experience of RSD is different. Many of us try to keep abreast of new research and can spot a dodgy fact straight away. But I wish you'd start to broaden your education about RSD, this is getting tedious...

About Roz's references:
These days it is not so much a paper journal that counts, but the quality of the publication. All three of Roz's refs are from highly respected publications. I mention this because you don't seem to have grasped that fact.

Roz's first cited reference
http://www.rsdfoundation.org/en/en_c...uidelines.html
is a web publication of the the "bible" of protocol for the medical profession, written by Anthony F. Kirkpatrick, M.D., Ph.D., Chair, Scientific Advisory Committee, Director of Research.

You say:
That is not what Dr. Kirkpatrick says:

"# Movement Disorder - Patients with RSD / CRPS have difficulty moving because they hurt when they move. In addition, there seems to be a direct inhibitory effect of RSD / CRPS on muscle contraction. Patients describe difficulty in initiating movement, as though they have "stiff" joints. This phenomena of stiffness is most noticeable to some patients after a sympathetic nerve block when the stiffness may disappear. Decreased mobilization of extremities can lead to wasting of muscles (disuse atrophy). Some patients have little pain due to RSD / CRPS but instead they have a great deal of stiffness and difficulty initiating movement.7 Tremors and involuntary severe jerking of extremities may be present. Psychological stress may exacerbate these symptoms. Sudden onset of muscle cramps (spasms) can be severe and completely incapacitating. Some patients describe a slow "drawing up of muscles" in the extremity due to increased muscle tone leaving the hand-fingers or foot-toes in a fixed position. This muscle disorder is called dystonia and it can be extremely disabling.

Patients with such seemly bizarre movements might be inaccurately diagnosed with a psychogenic movement disorder. Additionally, the fact that quite extreme behavioral changes often follow rather trivial injuries in patients with RSD / CRPS, this observation might contribute to the perception that the patient suffers from a psychogenic disorder as well.

Specific diagnostic criteria have been established for the diagnosis of psychogenic movement disorders in cases involving RSD / CRPS. 10 Unfortunately, physicians sometimes fail to follow these diagnostic guidelines and carelessly report a "psychogenic" disorder. 11 This misdiagnosis can be devastating to the patient and can lead to delaying urgent medical care.

A clinical test sometimes used to demonstrate that a patient is faking muscle weakness is called "give away weakness". This test is NOT a reliable indicator of a psychogenic movement disorder. Patients with RSD / CRPS will give away when a force is applied to their extremity because of pain. Also, because patients with RSD / CRPS have difficulty sustaining muscle contraction, they will give away as well."

Her second reference is from emedicine:
http://www.emedicine.com/emerg/topic497.htm
which is not a journal but is the original open access comprehensive medical textbook for all clinical fields. The author is Dr. Steven J Parrillo, DO, FACOEP, FACEP, Assistant Professor, Department of Emergency Medicine, Jefferson Medical College; Medical Director of Emergency Medicine, Einstein Elkins Park and Germantown Community Health Services; Chair, Emergency Management Committee, Albert Einstein Medical Center.

The third reference *is* a medical journal publication:
http://www.neurology.org/cgi/content...act/56/12/1762
Clinical aspects of multifocal or generalized tonic dystonia in reflex sympathetic dystrophy
J.J. van Hilten, MD, PhD;, W.J.T. van de Beek, MSc;, A.A. Vein, MD, PhD;, J.G. van Dijk, MD, PhD; and H.A.M. Middelkoop, PhD
From the Department of Neurology, Leiden University Medical Center, the Netherlands.

Since you brought up the subject of dystonia and muscle disuse , you might also be interested in this extract, also from the Guidelines:

"Failure to mobilize the affected region of the body might be a critical factor in prolonging the recovery from RSD / CRPS. However, disuse of muscle does not appear to be responsible for the genesis of RSD / CRPS. For example, investigators in Sweden have reported highly unusual data that makes it difficult to explain the genesis of RSD / CRPS simply on the basis of disuse. They carried out a pathological analysis of peripheral nerve and muscle taken from amputated legs of eight patients with RSD / CRPS. 13 In all patients, amputation was performed because the painful (hyperpathic) limb was useless or subject to recurrent infections. Skeletal muscle specimens were abnormal in all cases, but myelinated nerve fibers were normal, and in half the patients there was a loss of unmyelinated fibers. These findings suggest a microangiopathy in the affected limbs. Thus, patients with RSD / CRPS have tissues that are truly abnormal, and abnormal in ways that cannot be readily explained by disuse and/or psychological factors.

So, Mommyjen, to continue:
Well, it's a pity you didn't follow your own feelings - Trix's question was about temperature difference in the affected areas. Bringing in all that other stuff about wasting, bone loss, dystonia, crippling conditions, fevers, rashes, chronic swelling, tendonitis, death sentence - now, that is just plain scare tactics, and *not* supportive in my opinion. No one mentioned any of that till you did, MJ.

You say:
Why should Roz have to find articles for you? Can't you manage it yourself?

Some people on this forum (notably Roz) have spent a considerable amount of time amassing a wealth of information about RSD/CRPS; and they're posted right here. Couldn't be easier for you, you could begin your learning process by properly reading the back posts and their links. Or get yourself on the net, like the rest of us.

It's *extremely* irritating to read your persistently strident and uncompromising, often misinformed, posts. I realize I could put you on my "ignore" list, but I fear you are damaging what, until now, has been a pretty well-adjusted forum where we enjoy being together.

I know your viewpoint applies completely to you yourself, but bringing your soapbox into every single post you make and applying your own situation to everyone else is intolerable.

Here, we try to show sympathy, support and share information about new research into this condition. We take some pride in being as well-informed as possible, please don't undermine that by being so casual about it. We also, very importantly, try to *empathise* with eachother, a quality rather absent from your posts.