[boo55]

Today, it was passed by me that I may have rsd In dec. of 2005 I fell on ice and since have had surgery on my hand and on my ulnar nerve. My last surgery was in Jan. of this year. I dont seem to be making any progress in fact the pain in my hand and elbow radiates up my arm into my back and neck. I barely sleep more than 4 hours a nite and am so stiff in the morning that i sometimes wonder if I am going to make it down my stairs. Working is almost impossible.Some days I just wish I could sit down and not get up. I have had ot and pt. When I went to pt they used the tens pro on me and it made the pain and swelling worse, so I stopped going. My ortho sent me back to ot because I am loosing the strength in my hand it actually is at its worse now.I can't carry anything more than couple pounds with my hand. If I do I drop it and if I am lucky enough to be able to hold on to it my upper arm and back hurt terrible. I have swelling in my shoulder, neck and the side of my right side. I just feel like I am a mess that can't be fixed! It is so awful to be up in the middle of the nite and in so much pain. I see my ortho on Tuesday does anyone think that I should ask him about the possibility of having rsd? Thanks for listening to me whine and any answers or suggestions would be appreciated. Boo

[perceypor]

YES YES YES! That is what is sounds like to me. I have had RSD for 20 years now, that started in my right upper quad. First, go back thru your medical history. Record EVERYTHING. If you can get the original records, get them. Do some rsd research over the weekend, if possible. If you are in that much pain, it probably is RSD and it sounds like it is on the move. It only took seven months for mine to begin to spread. I fought my way thru RSD for 17 years undiagnosed - it is tough. Don't ever be afraid to bring something up to your docs. If you are intimidated to ask questions, then go somewhere else. You HAVE to have a team that you are comfortable with. If this is RSD, you WILL need to be able to talk/ask questions and get answers. They are there to serve you. There was little known about RSD for years, most docs are afraid of it, because they don't know. Their fears, for whatever reason will HURT you. Take control of your doc visits. You have to tell them what is going on, what you need, they don't know. Think about it - how many patients they see a day.

DON'T LIVE LIFE IN CHRONIC PAIN - LIVE A LIFE OF CHRONIC PAIN!
I don't know if you are religious - however, read a few chapters of DUETERONEMY! It will help. God defines RSD in chapter 28, tells what it is, why we have it, how long we will have it and what to do to live with it.

Sabrina

[Christina Marie]

I'm new to this forum, but wanted to get back to Sabrina after my medical appointments which were yesterday-- the neurologist I saw took awhile to think about my list of symptoms, he initially said I don't have a misshapen foot, (although my big toe nails fell off and my left foot seems misshapen to me-- because it has a torn tendon after having a broken toe this summer.) I had the log list of all of my symptoms, surgeries, etc. and he saw the pattern. "Less is more" in my case he said, and he saw that whenever one thing happens, another thing follows (i.e. removal of a cycst caused a swollen lymph node.) I realize that I don't have a full blown case of RSD, but I know I'm regressing in my physical state, and I've read in so many places that early treatment is critical.

He agreed to use RSD as a working diagnosis for me and gave me a prescription for lidocaine ointment to be used in the highest pain area in order to try to "contain it" . I asked him about the "explosion" I heard in my knee after I broke my toe, and he said it was probably caused by the nerves misfiring. If I understood him correctly, the nerve dammage is on the outer edge rather than deep nerve dammage which would show up on an EMG.

I was happy to just try something pro-active rather than to continue treating only the symptoms (which grow in number every week).

The bad news is, my second appointment was with the rheumotolgist who had initially referred me to the neurologist because when the neurological stuff (dizzieness, involuntary leg movement, tremors) started, she thought I probably had MS. The rheumotologist asked me "whose idea was RSD?" I told her the neurologist asked for her input on the situation and the medication, but she just looked at the prescription and sat it aside. She did a quick exam (made no comment on the RSD) and then said she had done all she could do for my fibromyalgia. She asked about my disability status--- I told her it was pending because there are more reports coming back from my last hospitalization. I'm wearing a heart monitor due to the fact that after my hospitalization my heart was racing and blood pressure was up then way down--- she asked about the monitor in a condesending tone, like, "so everything is fine with your heart, otherwise they'd call you on the phone, right? I agreed, because she was correct. Then she told me there's a new doctor at her facility who is working with fibro patients who need some "cognative" or "behavior/stress reduction" issues addressed. She said there are some people who wake up at 2 am worrying about their SSI/disability and that triggers their pain. She then said something to the effect that some people just think "if they can stop working, everything will be alright". I lost my temper at this point. I told her that she doesn't know anything about me, where I worked or what I've been through. She tried to say (with a smile on her face) that she could imagine what it would be like. I told her no, she can not possibly understand. I told her she didn't know anything about my work history, and at this point she tried to open my file. I put my hand on it to keep it closed and to get her attention. I told her I worked for the same place for 16 years, she didn't know how badly my co-works, staff and supervisor wanted me to stay, and most of all, how badly I wanted to keep working. It went on like this for awhile, still she never mentioned RSD. I told her I don't need cognitive help and I asked why on earth she would recommend something like that for me. She said it was because she had attended a seminar that morning and a colleage of hers just received a grant to implement this new program and she said it sounded good and thought people would benefit from it. I'm still emotionally freaked out by the fact that she was so off base and obiously put off my the idea of trying looking at another diagnosis as a possibility as well as a new treatment. She actually had the gall to say something like, "I don't know, maybe they'll approve your ssi/disability based on your heart issues alone," and I didn't bring up the conversation of disability, she did, but it was if she wanted to dangle that over me as a threat, or to see how I'd react. I told her I never wake up in the morning worrying about it, my only concern is that I need to be covered by Medicare/insurance because I'm not physically able to work and I'm sure that it would be next to impossible to buy an insurance policy (I'm currently covered by COBRA). I have been fortunate to work with so many good doctors and nurses, but yesterday I felt the female doctor I saw was so unbelievably insensitive that I'm still rattled.

Of course I'll never go to see her again, but I'm worried & wondering about what she will say to my neurologist.... just when I felt as if I was getting somewhere.....

Christina

[perceypor]

Christina, I am sorry for that appointment! They really don't get it. RSD is very complex and most docs just don't want to get involved. I went on an IME for my LTD company, now remember, I was already on SSD and my disabilities were documented. This doctor told my insurance company that I was suffering from a SUPER IMPOSED SOMATIC DISORDER. They have just been granted lots of money to do research in that area, and guess what? They find their own patients. They are known as "insurance whores" in the industry. They have to have patients in their programs in order to keep the money flowing in. It's bad! If that doctor put on paper your diagnosis, go with it. Get you a lawyer to get your social security. You will not have to pay up front. Obviously, you cannot work. And with a diagnosis of RSD, we all know what that means. Try to get an RFC (residual functional capacity) from your doc. This will suffice for SSD. SSD does not care what you HAVE, they only care about what you CANNOT DO. If you need a lawyer let me know. [moderator note: e-mail address has been removed] is me.

Sabrina

[Christina Marie]

I'm fairly certain the neurologist did document RSD, although he said it would be a "working diagnosis" but that is so much better than wondering how all of my many symptoms could be related. I feel like I have a potential solution, or at least an answer as to how all of the pieces might fit together.

Thanks for sharing the info about programs & grant money. That makes sense now. The rheumotologist actually referred to the neurologist by the wrong last name during my appointment with her-- so, even though they work in the same building, they must not see each other on a regular basis. Thanks for the e-mail address- I will be in touch.

Christina

[perceypor]

Man, how I wished you could get to Florida and see my team. They are wonderful. There is no such thing as a working diagnosis of "RSD", you have it or you don't. They know what you have. They could be afraid of malpractice. Since they don't know enough -- they stay away. DO NOT let them do this to you. Get an RFC from someone. Contact a lawyer! It is exhausting, but, it is worth it. We will be treated better soon. Awareness for RSD is on the rise. November 8, it is on in DC. There will be a get together there to discuss the Pain Act.

Good Luck
Sabrina

[Christina Marie]

That is scary...

The way my neurologist explained it is that there is no one definitive way to diagnose RSD, just as there is no definitive was to diagnose fibromyalgia. He reminded me that several (two, at least) have put the label of "fibro" on me, and I told him I was aware of that. He said he was willing to "try" the RSD treatments based on my symptoms/illness pattern, but because I don't have the "full-blown" version of RSD, he said it will be "trial and error". I was amazed at how well that small bottle of Lindocaine(sp?) worked on my back. But my legs are keeping me up at night now.... knees to ankles ...three sleepless nights and you know how that goes....

Do you know (or does anyone out there) what the best early treatment for RSD is?

Christina

[crabby0713]

hi! my name is maria. i was diagnosed back in june '07 w/complex regional pian snydrome aka RSD. what had happen was i had slammed my thumb in my car door. after being treated in the er and no fractures were found, i was sent home w/ some pain meds and told that i could return to work in a few days ( this was on a friday).by that monday, not only the thumb was acting up but my hand, wrist and lower portion of my forearm where killing me. i had made an appt w/ my primary, who took 1 look at me and refered me to a hand specialist. i went for my visit to be told that i just really hurt my thumb and once the nail fell off i would feel better. so i waited a few more days and by this point it's affecting not only my hand but my wrist and arm. i then went back to this hand specialist, who on a 2nd approach to treatment, realized that i have cprs/rsd. i was then immediately in contact w/ an anaestesiologist who started an aggresive treatment for plan for me. this included the stellate ganglion blocks (about 2x's a week) more pain meds, nuerontin and physical therapy ( 3x's a week). long story short, i've been living w/ this condition for 5 months now. my progression had declined to the point that i needed a nuerostimulator placed in my spinal cord.
the smyptoms you have are what i've expeirenced. the constant swelling, throbbing, aching, shoting pain that radiated up through my arm into my arm pit and chest wall. my hand would turn blue and go numb. or the exact opposite would happen where it would turn bright red and burn.( you could actually hold you hand up to my hand about 2 inches from my skin and feel the heat )
i couldn't wear sleeves b/c of the sensations.nothing could touch my hand or arm b/c the pain was devastating!!! it's tough! the amount of pain i was in was dibilitating, shear agony. nothing was helping. my quality of life was gone. i was placed on a neurontin, but that knocked me out ( that was the only sleep i was getting and i was only averaging about 1-2 hours of sleep and then 2 hours awake.talk about frustrating. ) i have been out of work since june and i'm not even sure i will ever be able to return. it's very scary to be this way. i am 31 yrs old and am facing a life time disability. i would never want this for anyone!!! may i suggest maybe meeting w/.an anaestesiologis?? or even a hand specialist. these doctors seem to be more intune w. the condition. i could recommend my docs depending where you are at. thanks for listening to me whine and let me know if you need anything!!!