hmm i guess i am a little confused...i have had rsd/crps whatever the fad phrase this year is for almost 20 years and i think the only thing that has kept me from losing all function in my extremities is pt. there are patients who have advanced dystonia that has resulted in long term "locked" joints who are beyond the capabililities of the pt, but if you arent at that point yet i cant imagine why a doctor would say to avoid it. i am the first to say it is an uncomfortable process, but if you arent "locked" and you are trying to avoid that outcome you need joint manipulation. if you dont stimulate your muscles then atrophy is inevitable. as for the ins thing about a limit to visits, i had that issue with my old ins company and my doctor eliminated the issue by altering my dx as my symptoms changed (i.e. my initial complaint was an injury, then there was post surgery rehab, then dystonia in my r arm, r leg, then there was a dx that was post rabdomyalisis).
i am not trying to be a pita for those with this dx, especially those who have a fresh dx, my point is simply that at any point over the last close to 20 years i have been dealing with this i think that the one mainstay that has helped to keep me alive and able to use my hands and legs is motion and the function it permits. obviously there are people who dont have that option, those who for some awful reason progress despite pt or at a rate that exceed the capabilities of pt, but for those who are able to really need all of the help they can get.
when i first experienced the symptoms i thought that pt was exaserbating the problem and both my ortho doc and my pt (he was a good friend, i saw him for the first time when i was 9 and my knee subluxed and never seemed to go for very long without his expertise) had to sit me down and tell me that they understood that it hurt to do anything physical but the only chance i had to continue to function was to continue with pt. at least nowadays you can usually find a pt who has some experience with rsd/crps patients, when i started my pt read everything he could get his hands on but the reality was he was learning by trial and error with me.
for the recently diagnosed with lower extremity problems i have a question, can you find a pt who has some experience with a mirror box. it sounds random but there has been a lot of research and if you can trick your brain into thinking it is using a functional limb instead of the one that is displaying the symptoms. if you start using the box early the messages being sent to the brain can be rerouted, and the best part if you have touch sensitive problems the box doesnt cause a flare.
just a thought please dont feel like i am trying to offend anyone i just think that if there is anything that might help it is worth trying...if it isnt a possibility then at least you wont look back years later and say i wish someone had told me this is what i should have done and have regret.

Hi Carrie.
Ihave only one question here; How in the world did you manage to get in to see Dr S so very quickly? My understanding is that the waiting list to get in to see him at all are very, very long. It has not been unheard of for a patient to be on the list for close to or even over a year. How did you do it so quickly?

Thanks,
Jose

Carrie,


I just want to discuss a few things you have brought up in your posts and I am wondering if your PM doctor may not treat RSD/CRPS very often. I may be wrong but there are a couple of things he has said which don't seem correct.
He is right in suggesting Stellate Ganglion blocks (I gather that is what he means by cervical blocks) as the fact you are so newly diagnosed these maybe all you need to stop your RSD/CRPS advancing or in fact put it into remission.
I don't understand how he can state that IV Ketamine won't work
It is just about the most bizzare thing I have heard as NOBODY can accurately predict the outcome of a Ketamine Infusion.

I also think that physiotherapy is very much warranted and needed at this early stage of your RSD/CRPS, especially with a PT who has a working knowledge of the disease.
PT isn't just about the excercise, it is to help keep joints mobile and muscles from tightening. It surely is painful but I feel that the result of NOT moving can be equally painful and if you can prepare with analgesia beforehand then it really is beneficial.
I was unfortunate that I did not have early intervention and am now suffering the consequences with contractures, dystonia etc.
Physiotherpists who are knowlegable about RSD/CRPS should also be investigating the use of graded motor and mirror imagery--this has also been found to "trick" the brain into a different way of thinking about the pain.
I know that some people may think that this infers that the 'pain is in your head' but that is not what it means, but it is the brain that receives and registers all pain.

It is fantastic that you have already have had a consultation with Dr S.
His intervention this early is the best possible outcome you could have.
Wishing you heaps of luck
Tayla

great minds think alike...pt mirror box

Hi Carrie,


If your skin is red and warm (maybe like a mild sunburn), you are in the acute stage; the time when everyone agrees RSD can go into remission. The problem is that no one has any idea why people get better during this stage: Except me.

I write a lot about RSD here, mostly saying it is a disorder called ischemia-reperfusion injury (IRI); but I'm not even gonna try to convince you of that right now. I'm only here to tell you that two of the OTC meds that have been suggested here have been shown to be efficacious in clinical research: They are antioxidants and DMSO (an antiinflammatory/antioxidant).

(I will be happy to send you the research abstracts, just click on the "rsd_hbot" link below).

Should you decide to look up some of my previous posts, I need to warn you that I talk about the chronic stage of this disease, NOT the acute stage; and they are completely different. We are all in the chronic stage, and there is no known widely efficacious treatment for chronic RSD (not even ketamine). For us, it is incurable; for you there is still hope.

I hope you'll post more about your symptoms because I know that everyone here wants to learn as much as we can. You have a willing audience that is also willing to give lots of advice; much of it disagreeing with other advice...Vic

Vicc,
You said:-



If your skin is red and warm (maybe like a mild sunburn), you are in the acute stage; the time when everyone agrees RSD can go into remission. The problem is that no one has any idea why people get better during this stage: Except me.

Don't you think that if you believe you hold the key to this disease that it would only be fair to share it with the thousands of scientists who have been working on finding a solution for both prevention and cure of RSD/CRPS for decades??


Tayla

Tayla,

If I could figure out a way to reach those thousands of physicians, I would be doing just that. Since I can't, I'm trying to reach people with RSD.

I try to explain how ischemia can cause every sign and symptom of RSD, and hope someone will see that it is caused by the ischemia in ishcemia reperfusion injury (IRI). I plan a post in the near future that will show why RSD can't be the result of a nerve injury.

I can't save the world, but I like to think I help a few people...Vic

Vicc,

I don't believe anyone implies that RSD comes as the result of 'a nerve injury' except of cause for CRPS type 2.

I believe that RSD/CRPS is usually the result of some initiating event in or to our bodies that sets off an unusual response by our sympathetic/autonomic nervous system .To find what allows some people to succumb to this disease where others don't, would indeed unravel the puzzle of prevention and cure.

Not everyone who has RSD/CRPS has had a reperfusion injury as they have not experienced an ischaemic event which causes IRI. Nor do all people go through the stages of RSD/CRPS that you have suggested in your post to Carrie.
Tayla

Let's please get the thread back on topic and to supporting a member as we can in the ways needed.

Thanks,

KD

[post deleted]...Vic