[allentgamer]

Sorry I havent been around much, hopefully everything will settle down enough where I can actually sit here and type for a few minutes.

The PT really took it's toll on me, and Im getting worse instead of better. That will be the last time I believe any physical therapists when they say they know how to treat RSD. Thanks to this self righteous goof I now have RSD in both shoulders, and down the right arm. The right shoulder is in a flair from hell, and just wont calm down. Every time I get the pain down I do something stoopid like, use my right hand, and it starts the whole thing over again.

Now my doctor has decided she doesnt want to take my insurance anymore, so I dont know what to do now ???? Gotta look for a new doctor, that may be a blessing in disguise after all the stunts this doctor, and her office has put me through. I will tell you all about the last visit tomorrow, cant type any longer.
all the best!!
Allen

[Debby]

Allen,
I just hate PT's who say "I know how to treat ___________." And they have no darn idea what the heck they are doing. It just galls heck out of me. I am sorry that it has made it spread like it sounds like it has. The doctor who has decided she won't or can't take your insurance anymore, is this the same one who sent you for PT??? And is it WC she won't take? or just your ins? Cause if it is your insurance, then she either has to post it in her office &/or send letters to everyone that she no longer takes that specific insurance. She just can't single you out. But then again, it could be a blessing in disguise.

Have you ever been able to have any Nerve Blocks done?? I can't remember if you have said one way or the other. Brain dead tonight *LOL* & most every day. I know WC has to ok it right? Again I can't remember if your WC case is over or not.

Well anyway, you sure do have all of my empathy. When I was PT for RSD if I could not stand to do what they requested then I told them I couldn't do that & gave them the exact reason. It increases the pain from RSD. And that would be the end of it. I did try what they requested me to do most of the time if I wasn't sure if it would be bad or not. If it increased my pain & stiffness then I would inform them of that & refuse to do that particular movement in the future.

Take care Allen, will be thinking of you.

DebbyV

[Jomar]

What therapies did they do for you, or have you do?

I found this information -
RSD PUZZLE #6
Physical Therapy

"There have been references in the literature that physical therapy can aggravate pain and RSD. Yet in every outline of treatment for RSD, the use of physical therapy is emphasized. These two statements seem to be contradictory."

Both statements are absolutely true. Excessive exercise and physical therapy that causes fatigue, pain, and distress to any part of the body, only flares-up and aggravates the inflammation and pain of RSD. On the other hand, the commonest aggravators of RSD are bed rest, inactivity, application of ice, and the use of assistive devices. In RSD, the best treatment is eustress not distress.

Distress refers to the stress of prolonged bed rest and inactivity. Like any other machine, prolonged idling of the body is distressful and causes damage to the body. Especially in RSD, the prolonged bed rest results in aggravation of pain and insomnia. The RSD patients suffer from severe, chronic insomnia due to the constant allodynic pain as well as due to the aggravation of constriction of blood vessels secondary to inactivity. One of the earliest signs of RSD is a restless night with the patient constantly being fidgety and changing position all night as well as having to get up and walk to get some relief.

The second form of distress is too much exercise, prolonged physical therapy.

The RSD patient has to learn that they will have pain with too much exercise, and the patient will have more pain without exercise. The patient will have to find a happy medium. The patient will have to rest and exercise frequently. Three days a week in the P.T. Department is not enough. The RSD patient should continue the instructions of the physical therapist from morning to night with equal periods of rest and exercise. The patient should learn from the human heart which beats approximately once a second for 80 to 90 years without taking a vacation. The reason is the heart beats half a second and rests half a second. The same principle should apply to physical therapy in RSD.

by
H. Hooshmand, M.D.
link- http://www.rsdrx.com/rsdpuz4.0/puz_6.htm

[frogga]

I hate PT I generally get worse from it from being pushed. Drs stopped it about a year ago cos I just couldn't handle any more.

Now me + carer have a list of stretches I have to do everyday to try and keep the joints that aren't "locked" moving and to try and stop my joints from fusing. Basically passive movements. Also have to do desense and I try to go swimming a couple of times a week. I hate PT's that say - I've seen x number of RSD patients and they've all got better because of me... it's like - I wish it was that easy..

for one year after I was diagnosed I gave up everything to concentrate on the RSD and physio and to try and get back to walking - even if it was with a frame or something... but it just made me so much worse.. grrr! so agreed an "exercise/ physio" thing with my consultant who agreed that PT really wasn't the answer for me.

So go with what your body tells you, but also listen to your mind. I know if I don't move I get worse, but if I move too much I get worse.. so I have tried to make a plan that meets that "in the middle" bit.. (more than min on bad days and less than max on good days) etc

good luck

rosie xxxx

sometimes with physio you have to go with your body...

Hey Allen,

I had a feeling you weren't ok. Damn shame I was right. Yeah, PT, all right up to a point and then NO MORE. Lie in bed and eat chocolates for a few days instead, that is my prescription for you for now...
Love, feel better soon,
all the best

[allentgamer]

It's for the poor folks who dont have an income, which I still dont have. Most doctors wont accept it. That said, I found this doctor in 2001 and have been seeing her since.

Now her employees look down their noses at people on this type of insurance, and if you can remember all the crap they put me through with meds. Well this last visit really got to me. After I signed in and sat down they called me up to the desk to ask if I really had an appointment. Then asked if I had the little appointment card, which I never needed before ever. Well I didnt so they said that they would have to work me in because I wasnt in their schedule. I said ok, but I didnt know it was going to take 2 and half hours to work me in.

Once I was seeing the doc I asked about the wait, and she quickly said I wasnt even going to be a patient after 11/7. Then it hit me that they did that on purpose knowing I wouldnt have the little appointment card. She did take xrays of the shoulders and told me she would call later that day with the results................no call lol.

I thought it was bad to have my hip and leg hurtin all the time, and having to ride in a chair, the osteo and all that. But wow I hope this shoulders and arms thing gets under control soon! The pt guy had me do this certain exercise that really hurt, and I have never recovered. I only did it the one day too. The dude got mad at me for not cooperating the rest of the visits on that certain exercise.

Well im done for again but I wanted to get this all out of my system before I stopped.
Love ya all
Allen

[dreambeliever128]

I couldn't do PT either. I spent 4+ years in PT but never did any. They did massages on me. I had some good therapist. My first 2 were very good, they didn't even try to make me do it. After they left the 3rd one made me try PE and I couldn't do it. I went looking for another PT'er and I found a husband and wife that had studied in Holland and were taught massage therapy was better for people then exercises. It loosens up the muscles and gets the trigger point knots down.

I did start walking though. I have walked for about 5 years. I would walk and cry everyday until the Physical Therapist got me loosened up and doing better. It took all of those years to do it.

I started with the RSD in the right shoulder and an Osteopathic Dr. messed up both of my arms popping my bones. Now I have it pretty much all over but I have got it in check with meds, blocks, and triggerpoint injections.

I don't know if I believe that the PT does an RSDer any good. It sure didn't do anything for me. I've been blessed for the past few years with the Drs. and Physical Therapist I have found but it took me a lot of years to get to where I am.

Nowadays Drs. can do anything they want to do. I have several friends that got letters from their PCPs saying they had too much wrong with them and they couldn't help them. I had a pain management Dr. at the University of Colorado that said he couldn't do anything for me so I do know they are out there and apparently they can get buy with it.

I am on state insurance also because of how I was done by SS so I do know what you are talking about. There are so many Drs. out there anymore that won't even accept it. But just keep looking, don't give up because I do know there are some good Drs. out there that will take your insurance. I have a Dr. that took care of me for 5 years with no pay at all. I put him in the Saint catagory but there's not a lot of them out there either.

Also the Drs. now are harder to sue because of the laws nowadays so they get by with even more.

Good luck on finding the help you need and remember, don't give up.

Ada

[Joselita]

Allen,
Oh Sweetie...I feel for you! I remember so well what it was like to go to PT that didn't know what the crap they were doing when it came to RSD patients, and how much more pain I would wind up in because of them. I was lucky, though, as they only managed to help my RSD spread up my leg, and not up into my upper body (that I did all by myself..). Seems amazing to me now, when I think back on it, and remember the tortures that they put me through, and how they topped each session off with ICE! Or tried to; I am a pretty good escape artist when I have to be, even from that thing they call a "Kyroboot"or something like that. YUCK!

I am sorrier still to hear that you have a beeyatch for a doc who is dropping you like a hot potato. Is it because she has stopped accepting the type of insurance that you have? You might make certain of that, by calling your State agency to find out. They can also tell you any other doc in your area that takes their insurance. They might also be able to help you out if you find that all of the docs in your area that do take that insurance "aren't taking new patients".

Have you gotten you SSD yet? Getting Medicare will help....even though there are docs out there that don't take that insurance, there are more that do than that take the state kind. If I am remembering rightly (and sorry...my brain is kinda mushy these days...Teenagers, you know? LOL) you are still stuck in the process of getting SSD? Is that right? If so...where are you? Been denied? Once, Twice, three times? Going before the Fed Judge yet? I won mine before the Judge. Just hold on...hard as it is, and as much as it sux and is not fair that they make us jump through so many hoops for so very long, just hold on. And, make SURE that you keep records of the problems that you are having now getting care, too. Try to get it in your SSD stuff, and FOR SURE make sure that the Judge hears about it if/when you get before him. The reason is, because it affects your care, and is detrimental to your health.

I really, really hope that things start going better for you. You are such a good guy....you so deserve a break. People like that lady doc of yours will have to answer for these things that they do...this I know. You just keep on keeping on, and let us try to help keep your spirits up as much as we can. Come and vent whenever you need to, and don't you EVER worry about doing it! I know how the doc hunting can get a person down, and how badly it feels to get dumped by a doc. Been there and done that too. LOL. Shoot, after all of these years, there isn't a whole lot that I haven't done (or at least heard about...LOL) with this RSD crap. Just try not to let it get you down.

Do you have enough meds to get you through? Call her office BEFORE the 17 if you don't, and try to get her to write you a script or at least refills....post dated if it makes her feel better....to help you, and to try to have at least one less to worry about, and to buy that much more time to find another doc. Erm...I know that there is other stuff to do...but I can't think right now. Get refills on meds...get copies of medical records...seems like there is something else to do before leaving a doc? If I think of it, I will get back.

I hope that you have a good day today...

((hugs))
Jose

[allentgamer]

For this doc, and it really I feel it is for the good. Thanks for all the advice and encouragement, I thought by now I would have the SSDI/SSI, and didnt think there would be any spread at all of the RSD. Boy was I wrong LOL!

My SSDI case is at the appeals council now, and my attorney says we should be hearing one way or another by Nov 11. He also said at the moment I cant add any info to the case, not until they make their decision. Im believing for the outright win this time around, but if they dont I have a very good attorney this time. Not like the one that went to court with me .

I want to post replies on a few of the threads, but I just cant sit here that long typing. That is such a bummer. Im pretty sure the RSD spread into the right shoulder, arm, and hand. Plus I think there is some other damage in the shoulder as well, but im not to sure what it is. My skin is real tender over the whole arm and hand, and the shoulder makes alot of noise when I move it that also hurts like the dickens. Popping, and clicking, and I think swollen too.

Well thats it for me for now.

Love ya all
Allen

[Jomar]

Allen , I haven't read all of your earlier posts - but the shoulder/arm / hand makes me wonder if you possibly have TOS too.

Have you read about thoracic outlet syndrome {TOS}
- for the shoulder/arm/hand problems?

Many with TOS have RSD also.
We have a TOS forum here too with many info links in the stickys.
a few-
TOS info:
http://www.nismat.org/ptcor/thoracic_outlet/
http://tos-syndrome.com/newpage12.htm
http://tos-syndrome.com
http://www.acofp.org/member_publications/thoracic.htm
http://www.cwce.com/feinbergarticles/tos.htm

and the link to all of the stickys
http://neurotalk.psychcentral.com/showthread.php?t=84