Newly Diagnosed Need Advice
 

As you know I was recently diagnosed with RSD. I found out today that I have a 1.2 degree tempurature difference from my hands to my arms, and temperature difference from my hands and arms to my chest.
What does this mean? What should I ask my Dr. for? What is my best chance for remmission? I apologize for burdening you all, I just have no idea what to do now.
Tracy

Hi,
Sorry to hear you got RSD. The good news is if you find out in the first 6 months 90% of people can get rid of it. Try not to put too much stock into the temperature difference. There are many causes of that and it is just one small piece of diagnosing RSD. The temp difference in and of itself is not dangerous. You want to ask for a 3 month plan. Ask them what the goals are for 3 month. Most important thing it PT Use your limbs and unless you have a fracture or injury try not to imoblize or favor it. Most of the " crippling" you hear about iwth RSD is from disuse. The wasting of muscle, spasms.... all of that would happen to anyone who stopped using a limb normally regardless of a pain syndrome. RSD is basically phantom limb pain so you can and should ask for nerve blocks. An early diagnosis and a good thing!
Stay on top of the doc's to get started on the PT and blocks. Try to stay away from narcotics if you can for now. You want to have some choices if you go past 6 months with no relief. I am sure others wil be along with more to add. I have had this since I was 3 and I am a married mom of 2 now. It isn't a death sentence so stay positive! I also reccomend seeing a chronic pain therapist just to help you stay on an even keel while you treat it. Blessngs

The temperature difference means that all sorts of things inside your arm are not working properly which is causing the temperature to be colder on the rsd side.

My rsd side used to be 10 degrees colder than the other.

It is just a symptom. There are many others besides pain, like discoloration( purple, pink, black), . Check out some of the rsd website that list all the possible symptoms.

Peace and hope,
Lisa

Hi there, I agree with Mummyjen. It is early days and things can get better!!
Sometimes you do need to be very pro-active and insist upon a referral to a doctor who will treat your CRPS with blocks, ketamine, graded motor imagery and physio instead of huge amounts of medications.
The temperature change is just a sign of sympathetic nerve dysfunction causing vaso constriction and therefore colder temperature. It is often transient and will often improve greatly with nerve blocks.
Please stay positive and remember that many many people get better but unfortunately they don't usually come onto these forums to tell us. You can get a pretty jaded view of the outcome but just reading CRPS/RSD forums.
Lots of luck and:hug:
Tayla

Some of the temp change can be from TOS too.

The early treatments as suggested by the others is the way to go- I think.

If you can add some Vitamins & supplements from a nutritional/healing standpoint- i think theres some info on that here or ask on the Vit & Supp lement forum- there are interaction checkers on both forums stickys too.

Hi Trix,

Check your PM's.

HOPE

I agree..
 

Hello..

I would like to add antioxadents such as grapeseed extract.. I just drink ALOT of white tea for my antioxadents, and if you wanna warm up that arm I'd sugest a warm soothing epsom salt bath (helps with the pain too).

I was diagnosed at 4 months and thanks to WCB didn't get my first block till I was over 9 months along (lol sounds like gestation) and by then it was too late. Do your research and then bring it to your doctor, but don't overload him/her at first.

I didn't push enouph and don't think it coulda put my fire out permanantly because I have body wide symptoms that started before my blocks did.

Sory to ramble the cold thing is scary just try to stay warm and do some research... we can help you here.. this group of people have awsome support and research potential here a goldmine.

Have you read the rsdrx.com website?

Best of luck hon and try keep that limb warm I find the colder I get the worse my pain.

Hugs'
Sandra :cool:

Hi Trix,

I'm so sorry to hear about the new diagnosis, but welcome, and I hope we can help a little. Several people here have TOS as well as RSD so you're not alone.

This is a startling statistic, MJ - please could you tell us where you found this info?

all the best :)

erm.....

"Most of the " crippling" you hear about iwth RSD is from disuse. The wasting of muscle, spasms.... " (mommy jen)

I'm sorry. I don't agree. To put it simply (I am really unwell at the moment so can't be at the computer for long and am getting a friend to type this) neurological issues are involved with RSD.

Also, my consultant (best specialist in the UK) believes that there are 4 types.

Explain more later.

Frogga xxxxxxxxx

Hey there, MommyJen- just wondering where you get this statistic??

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:hug:

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.

:(:(

Mommy Jen I am sorry that it took so long for you to be diagnosed with lupus - and yes, it is wrong that doctors attribute everything to RSD because it's easier - it shouldn't be like that. But, unfortunatly, it is.

I have severe (full body) dystonia caused by the RSD. According to my rheum (who specialises in RSD in the UK) she sees a subset of patients with dystonia and RSD and that this group of patients makes up about 20% of her patients. It is not an official statistic, but that's what I have been told in person.

Another issue with the "muscle wasting" is proprioception - if you don't know where you limb is and your brain is ignoring it then it will obviosuly not be used as much. Proprioception is due to the overwriting of brain patterns by pain signals (again, a quote from my dr - Prof Blake and Dr McCabe at the national hospital for rheumatic diseases in Bath otherwise known as the Mineral water hospital) which means the brain can't understand where your limb is and thus it is used less. This could explain why you can walk around your house but not outside as you know where you are in space as related to your house - because I bet if you moved the furniture around then you would struggle more because your brain wouldn't be able to understand where it is. Or you could just be lucky.

Well... even if we are just looking at the clinical features and their possible disabling effect (ignoring mood issues/ depression/ effect of severe pain/ sensitivity etc).

Osteoporosis/ bone changes --> (can be) disabling - hot bone syndrome
muscle wasting/ weakness --> disabling (not always caused by lack of use)
peculiar sensations --> numbness can inhibit movement not through lack of use but through loss of control of it.

(this is taken from CRPS & RSD Patient information booklet - published by RSD UK in association with the neuroscience resaech group, RNHRD Bath, UK).

I think we must all remeber that RSD is a very complex disorder - we are all individuals and MANY people get better from this, or at least recover to a point where their daily life is little affected by it.

I will have to come back to this - my pain is too bad to do this atm and vision is going.

Frogga

Artist,


I am sorry but it was not my intention to imply that people within this forum are not " pretty bright and well informed" and your addit to me was a somewhat sarcastic response to what I thought was quite a sensible reply to a statement regarding dystonia, which I do happen to suffer severely from. It is for this reason I have extensively researched it, it has nothing to do with the fact I am a nurse.
Whilst the majority of you are well informed there maybe some newer and less well read members who may become unduly concerned about the possibility of developing dystonia as a result of their CRPS which I felt was worth mentioning.
Cheers Tayla

Fair enough, Tayla! :)

all the best!

Way to pick my post apart and NOT pay attention. The AUTOIMMUNE SYMPTOMS I listed such as fevers and rashes are NOT rsd. The point being that not every thing is related and it is important not to let Doctors tell you that it is. How the heck does that scare anyone. Here is the reality....RSD is terrible but it is not a death sentance and that is the most supportive thing you can say to someone who's head will likely be filled with horror stories and worse case scenario's. You can surf the net to find anything to back up any theory so that get's old.

The BEST thing my Doctor ever told me to do was to RESEARCH and LEARN about RSD, the available treatments, etc. He even gave me web-sites to explore!! This Forum has a WEALTH of information in it, and has allowed me to discuss subseqent questions that I may have with my Doctor more intelligently. I wish I found it EARLIER, when I was first diagnosed.

The most DIFFICULT part of RSD is trying to explain to OTHERS all the ways that it can effect one, physically and/or emotionally. AND, what has or hasn't been effective. OR, just "venting".

It could be that Doctors that "discourage" their patients from LEARNING, are pretty darned "insecure" THEMSELVES, and far too "RIGID" in THEIR limited knowledge of RSD to be OPEN to other forms of treatment, etc.

After all, "knowledge is POWER", and SOME Docs sure like to wield their Power over vulnerable and defenseless patients. Personally, that is who I would "run like H***" from, NOT a Forum of SINCERE, knowledgeable, UNDERSTANDING and SUPPORTIVE members...

Brokenwings

Tayla,

You have picked apart my prior posts which I have ignored till now. In other words what people accuse other people of they usually are the guilty person and just turn it around in manipulation. Like accuseing someone of being sarcastic for instance.
Hugs, Roz

Ok. I really think we should calm this down a little bit.

I think the more this forum continues the more I realise how important not only what I say but how I phrase something is! The identical same idea, framed in two different ways can lead to totally different responses (If any one is interested - that's economic framing theory and why advertisers make things only 10% fat instead of 90% fat free - identical, but worded differently).

Mommy J. I have lived with this disease for 5 years and I can empathise with some of your ideas - such as not letting RSD take over your life - it is a major PART of it but it shouldn't RUN it. I also agree it is important your life shouldn't be just illness related but encompass other things that make us the people and individuals are. This is something I have seen across this forum - as people who are limited to the house or to bed start up threads on hobbies they enjoy or ideas for keeping mentally and physically busy to help with distractions (I think I mentioned the threads to you).

As I mentioned, I also agree with you that doctors are too fast to blame everything we suffer as RSD - (although then again, I can also complain about other doctors who search for something that isn't RSD - ending up with MS/ MD/ primary generalised dystonia/ Central Pain Syndrome and gosh knows what else!....... However, I feel that as RSD is not a well known disease and it's affects on individuals are different - we cannot say what IS RSD and what isn't - well, I can't. (eg the spasms - is this RSD? or is it dystonia? what about the spasms before the dystonia? or even the temperature change - is it RSD? or Raynauds? or did the RSD cause Raynauds? or is it something totally different?). It has taken me a while to learn that I am never going to have a full fitting label for what is wrong with me and I am unlikely to find the answers to my RSD questions. About rashes - I have had them ever since I developed RSD - and never had them before. The easiest way to tell if I'm about to flare up or collapse is to look at my throat and chest - if the rashes start then I am about to get ill. I have never seen information linking CORE body temperature to RSD and don't know if it affects it - it would make sense if it did because it's another part of the autonomic system which is responsible for homeostasis of all that stuff. I have however seen research about the limb temperature - the colder the RSD limb is the more tough you have to be with the treatment/ physio but you can still get better!!!

Also - from what I understand - RSD leads to hypoxia and chronic pain and neurological issues. Hypoxia --> POSSIBLE circulation issues, blood clots, non healing skin, easy to get pressure ulcers etc, infections easily got, muscle weakness and osteoporosis (hot bone) as well as increased pain. Also nerves dying off because of basically, interior frostbite (I haven't got the references but will find them if you wish).

Chronic pain --> lower immune system, tachycardia, blood pressure, weak/ strong pulse, fatigue, other types of chronic pain for instance from postural problems (hold your neck funny so it hurts less, then get a headache etc)/ digestion issues/ reproductive issues (periods stopping etc)/ problems with internal clocks/ sleep/ visual/ auditory/ concentration issues, Oh, and psychiatric issues such as depression, anxiety etc etc.

neuro issues --> bad proprioception/ movement initiation/ stress tests/ co-ordination/ control of various organs etc etc.

so even though it might not be PURE RSD, the symptoms themselves can create diseases or other problems themselves.

RSD does suck so much. Many people are lucky and recover but for those that don't it can be a very long and difficult and scary journey. This forum is important for that - to give people individual support as they work their way through to being able to "live with" it. The RSD spectrum can be very hard to deal with - I am very disabled from the RSD (I have mild movement in my right arm/ shoulder and movement on my face but that's pretty much it. I have severe dystonia and I have 24hr carers and am stuck either in bed or in my wheelchir.) BUT, this happens to very few people. But. what am I supposed to do? If we want to show newly diagnosed people that they can get better - I am simply scaring them? maybe their should be a bone yard for those with intractable disease? (ok. that's me over reacting).

MommyJ. I am very sorry that you feel the way you do about the forum. I also wish that you could think before you write and re-read your posts. You have interesting points, but they cause so much conflict that the actual ideas behind them are rarely discussed.

Frogga xxxxxx

:grouphug:

frogga...well said. :hug:

let's keep this on topic for the most part. this thread has such a wealth of wonderful information, but it is getting lost.

Mommyjen: You keep saying that collectively we misunderstand what you write here and that it was not what you meant at all. Here is a quote from your message on 3-12-07:
"If you feel picked on then chances are you are relating to something I wrote and don't want to look at it. I say look hard at it until you can soften to yourself and not feel guilt or ashamed or persecuted."

When some of us wrote that we were hurt by your earlier comments, you could have been gracious enough to say you were sorry and did not mean to hurt anyone by your remarks or even just let it go. Instead, you say it must be true if it hurts. Also, I am not aware of anyone on this forum who is ashamed or guiltridden because of having the misfortune to get RSD.

We are a family here. We listen to each other, offer advice when asked, are free to vent when we are feeling overwhelmed, and freely give support to each member. When someone says something we are intelligent enough to know if it has merit for us as an individual. You may be surprised, but we have been on this board for some time and have managed quite well without being told what or how to think.

I know you have had RSD longer than most of us, but that does not mean you know it all and we know next to nothing.


Regards, Lil

Roz,
I will gladly put my hand up if you think I have been argumentative or insensitive but I have checked all my previous posts and can not find one where I have "picked apart my prior posts". I apologise if I have but I would love to know when I have done so to deliberately undermine you.

If you don't think Artist was being sarcastic to me then that is fine. It was addressed to me so should not impact you at all.

I joined this forum for many reasons, one was to find support from likeminded people and learn how I would best approach my future with this disease.I have witnessed the whole gamut of approaches from people I have met with this disease, many have made me wonder if there was anything to look forward to as they focused overwhelmingly on the negatives and lived minute to minute expecting the worst. I don't want to be that way and I know it does NOT have to be that way!
I have had CRPS for over a decade, I have severe dystonia and am in a wheelchair and yes, I am a reg. nurse of 30 years but I am not insinuating that I am more knowledgable than the rest of you but I do have a fairly adequate knowledge of the anatomy and physiology of the disease.
Must admit I feel pretty disillusioned at the moment, I am uncomfortable thinking I have no credibility with you all. Please remember we are all newbies at one point in time.
Good luck to you all

maybe it's time to stop posting the personal replies back and forth -and focus on replies to trix's original post.

this is her post and her topic/question-

[trix
As you know I was recently diagnosed with RSD. I found out today that I have a 1.2 degree temperature difference from my hands to my arms, and temperature difference from my hands and arms to my chest.
What does this mean? What should I ask my Dr. for? What is my best chance for remission? I apologize for burdening you all, I just have no idea what to do now.
Tracy]

Let's take a step back and keep it on track.

thanks everyone.

Thanks Jo :) Hi Trix,

Not that I know anything about thermographical problems (:wink:) but you don't say if the temperature difference is higher or lower than normal. Confusingly, there seem to be three kinds of temperature symptoms in the limb - some are too hot, some too cold and others a mixture. Never seems to be just right.

Usually the hot type comes on early, often presenting with redness and swelling, like a puffy sunburn. The cold type comes on at a later stage and is often accompanied by a bluish, cyanotic colouration, and dry, shiny, thin skin.

I know we have many people here with both symptoms...don't know if anyone can tell you what it means - I'm not sure medical science knows that either - but perhaps people know ways of dealing with it.

There are certainly some back posts about the hot, swollen condition; I would just say that, whatever you do and despite what the medics may say, if it's hot, don't use ice on it, perhaps try contrast baths (alternating cool and then warm water) immersing you arm up to the elbow. I'm not too sure that the cold state is "helpable", except to keep the limb warm at all times.

BTW, if it's at the hot stage, this usually does subside eventually. I had that for at least a year. I don't have quite a "cold stage" now - 3 years on from getting RSD - but my RSD hand is thin, shiny, papery with stretched skin and is a little less pink, a slightly greyish colour. And I get bright red mottled areas on (what used to be) the fleshy areas at the base of my palm.

Hope this helps! all the best! :)

hi trix-- i have the icey-cold problem that turns the skin a reddish/bluish, mottled colour. at times, my palms are very red, with white splotches. the doctor says that this is caused by "vasomotor instability" and decreased "micro-circulation" associated with the RSD. the blood vessels basically go into constriction, so less blood flows into thr effected area. the skin is also thin and shiney, and feels like a bad sunburn. my fingernails have grooves in them. nerve blocks have helped with the circulation prblems, skin sensitivity, as do warm baths, gentle exercises and also a warm heating pad. sometimes, medicine can be prescribed that helps keep the blood vessels from going into vaso-spasm, such as diltiazem (cardizem is the generic). this also helped me, but i have rather low blood pressure, and had some problems with dizziness, and unfortunately, had to discontinue it.

the doctor has discussed a spinal chord stimulator. he has several patients who have had very dramatic results in their symptoms.

hope this helps.

brokenwings

RSD/CRPS and autoimmune disease
 

Hi. I haven't gotten into this thread thus far, but it seem that there is one point of clarification that I can offer.

Mommy Jen, there is as you must be aware a lot of information suggesting that RSD has an immunological component. By way of example, take a look at the following articles:

1. "Increased endothelin-1 and diminished nitric oxide levels in blister fluids of patients with intermediate cold type complex regional pain syndrome type 1," J George Groeneweg, Frank JPM Huygen, Claudia Heijmans-Antonissen, Sjoerd Niehof and Freek J Zijlstra, BMC Musculoskelet Disord. 2006; 7: 91. (demonstrating a relationship in human CRPS patients between cytokine production and diminished NO levels leading to vasoconstriction: as close to the Holy Grail as anyone is likely to come in a while, for my money at least);

2. "Evidence for local inflammation in complex regional pain syndrome type 1," Frank J P M Huygen, Anke G J De Bruijn, Martha T De Bruin, J George Groeneweg, Jan Klein, and Freek J Zijistra, Mediators Inflamm. 2002 February; 11(1): 47–51;

3. "Intermediate Stage Complex Regional Pain Syndrome Type 1 Is Unrelated to Proinflammatory Cytokines," Renate J. M. Munnikes, Christel Muis, Martine Boersma, Claudia Heijmans-Antonissen, Freek J. Zijlstra, and Frank J. P. M. Huygen, Mediators Inflamm. 2005; 2005(6): 366–372 (as described in their most recent article, this study looked at "patients with an intermediate duration of CRPS (median 20 months) and . . . found a significant elevation of IL-6 and TNF-a in the involved extremity compared with the uninvolved extremity"); and

4. Frank J.P.M. Huygen, MD, et al, "Successful Treatment of CRPS 1
with Anti-TNF", J Pain Symptom Manage. 2004 Feb;27(2):101-3.

All of which I have previously provided links to at: http://neurotalk.psychcentral.com/sh...p?t=247&page=3

There's also another article from the Huygen's group that I've come across and will work into a thread of it's own, along with some potentially very interesting tie-ins going far afield, which I will try and post in the next couple of days. In the meantime, here's the article, Frank J.P.M. Huygen, et al, entitled "Mast cells are involved in inflammatory reactions during Complex Regional Pain Syndrome type 1," Immunology Letters 91 (2004) 147–154. A copy of the full text of the article is attached hereto.

The whole point of this is to say that a lot of us have been convinced for some tome that CRSP-1 is, at lest in part, in origin, and very possibly auto-immunological as well. I know that there have been a number of thread on this and BT1 in which people were shared for information regarding their autoimmune conditions. (You may have lupus, I have some sarcoidosis.) But perhaps the most telling thing to me was a widely reported pattern of RSD remission during pregnancy. You haven't mentioned this one way or another, but perhaps it happened to you. In any event, researchers looking at an autoimmune thyroid disorder not only found a remission of symptoms during pregnancy, but a mechanism to explain it: chemical mechanisms the body produces in order to block attacks on the fetus (with it's own genetic structure) in the immune system's ongoing struggle to distinguish self from other. See, “Postpartum Autoimmune Thyroid Disease: The Potential Role of Fetal Microchimerism,” Takao Ando and Terry F. Davies, J. Clin. Endocrinol. Metab., 88: 2965–2971, 2003, the abstract for which follows:

Fetal microchimerism is defined as the presence of fetal cells
in maternal tissues established during pregnancy. Immune
suppression of maternal immunity during pregnancy by the
placenta may play an important role in allowing the establishment
of such fetal microchimerism. However, peripheral
blood fetal microchimerism that persists in the postpartum
period is considered a natural event and implies the induction
of tolerance during pregnancy. Identification of fetal cells
that persist preferentially in maternal tissues subject to autoimmunity,
such as skin and thyroid, has also suggested the possible immune
modulation of the autoimmune response at the target tissue by fetal cells.
Accumulating evidence suggests that fetal immune cells may
be reactive to maternal antigens and, therefore, have the
capacity to trigger graft vs. host reactions. This would provide
a mechanism for the initiation and/or exacerbation
of autoimmune disease.

The course and severity of autoimmune thyroid disease
have long been known to be profoundly influenced by pregnancy,
with disease suppression prepartum and exacerbation
postpartum. However, the precise mechanisms involved have
not been fully understood. Here we have reviewed recent information
on the possible role of fetal microchimerism in autoimmune
thyroid disease, focusing on the immunological
consequences of intrathyroidal fetal cells and their contribution
to postpartum exacerbations.

Unfortunately, the article is just slightly too large to post here. I would however be happy to email a copy to anyone who wants it: just send me your email address in a pm and it will be on its way.

Bottom line, I believe it's a mistake to try and draw line between RSD/CRPS and other immunologically based conditions, where a great deal of evidence suggests that we're all in the same soup.

Mike

Thank you to those that answered my questions. My hands are colder than the rest of me. The skin is bright red, with mottled white patches. My arms have a sunburn like "rash"on them. They are quite swollen, and shiny. When I use them too much the "rash" that runs all the way up my arms gets really bright and hot. My upper body sweats like crazy. Then my hands turn a dusky purple colour. It is no fun at all.
Anyway gotta go daycare kid getting out of hand.

My best advice is to take advice from all sources, research, don't trust just one doctor, read, learn and find strength from wherever you can! This is your disease/condition and the best thing you can do is get information, question information and learn from information. You are in the early stages and that is in your favor. Last but not least, always get daily hugs!:hug: