Frogga,
Physio? Do you mean physical Therapy? If so NO I did Yoga once a week before this all started and walked a few nights a week. I wasn’t in great shape but I was very flexible from being a gymnast when I was younger. Once my 1st symptom occurred I stopped all physical activity. It was painful enough to just walk up a set of stairs. My docs said to save physical Therapy for when I get back from Germany. Insurance Companies only allows a certain amount of visits per year/lifetime not to use them up now, save them for when I REALY need them.
Carrie

Carrie,

I never heard of insurance companies putting a limit on phy thereapy?? or even a life time limit... I have had 2 insurnace companies and had phy therapy with both of them and they said as long as I pay the copays and make a gain or still have the diagnosis that they would still pay with no limit. I am interested in yours having a limit and a lifetime limit!! god that would suck ! sorrry.

Have you tried getting into seeing Dr. S in philly instead of going to germany? and how long have you had RSD??


Amber

Hi Carrie

Ok - so what have you tried? The way I understand it you have full body RSD for the last couple of months and you are now developing dystonia in your left arm? Is that right?

Ketamine - you can take this orally every day - which I do. Some people here swear by things like Grape Seed Extract and antioxidants such as DMSO. There are pain creams which can be used which are a mixture of ketamine/capascin and other stuff. Blocks - it would be worth a try as you sound like you are in the beginning stages of RSD and you are not going to lose anything by trying and they really help some people.

I am really baffled by what you say about physiotherapy - to not have had any at all? If you believe that your RSD is similar to the RND type then surely having physio is really really important (and yes I do know exactly how much it all hurts! but I have been unable to find a physio willing to treat me for the last 2 years or so because I'm too advanced/ in too much pain and alot of the deterioation I have had to deal with since I feel is related to that. The problem is that contractures can form fast in RSD areas and so physio is really important or SOME way of keeping the muscles moving/ normalised.

I know this may sound like a rant - but I have had huge problems with physio which alongside severe RSD has meant that I have developed contractures in most of my joints. You may never get them, many don't, it's just I know how hard to deal with they are and I don't want anyone that doesn't have to to go through that!

Love

Frogga

xxxxx

Frogga,
Is oral Ketamine covered by insurance RX plans? The only thing I have tried is regualr meds, anti inflamatories, anti seizure, muscle relaxers, pain med, anti depresants & supplements. Have done no physical therapy and do not plan on it. I tried to ride my exercise bike a once or twices but it just made my leg muscles too weak later in the day and I ended up on the couch with limp burning legs for the rest of the day.
What is DMSO that you mentioned in you mesage?

Carrie

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.

Amber,
I've worked in the medical administrative field for 12 yrs. almost all ins companies or at least the ones in my area NJ have a limit on physical therapy. my plan NJ Blue Cross/ Blue Sheild) is somthing like 40 visits per diagnosis.
I have seen Dr. S, he is the one that pu me on his Germany list. He controls the list. He said I need IV Ketamine too but we are fighting with my insurance company on getting it covered. I've only had RSD for 2 months.
Carrie

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