I am not so server, YET! Should I be doing something different? - Reflex Sympathetic Dystrophy Message Board

anetbnet · 09-15-2003, 02:06 PM

It has been almost 2 years since my first symptons. I have finally been diagnosed by a physiatrist. I had previously seen my family physician, orthopedic surgeon, physical therapist and a neurologist. My liver ALT test just recently came back at 225 (poor!). This my doctor seems to belive is due to the fact that none of the physicians I had seen knew what was wrong with me and told me to take Advil, Tylenol you name it. I did not sleep a night during my undiagnosed time due to severs pain and burning. I am left handed. My left shoulder, elbow, hand are the effected areas. I can still use this limb. I am currently on 1800mg. of neurontin a day, plus I use a TENS unit. I want to know the correct treatment for RSD before this gets worse or spreads. This distrophy has effected my job, my family not to mention my emotional well being. I feel so helpless. I have a torn tendon in my shoulder and alot of debris from a putti-platt surgery 25 years ago. Should this be repaired? What are the risks since I already have RSD in this limb? There does not seem to be anyone in this tiny community except my physiatrist who has a clue what RSD is, so any response is welcommed.

dayton · 09-15-2003, 02:21 PM

Anet, I don't know about the window cause you said it's been 2 years, right? I would go to a pain management doctor and have stellate ganglion blocks done right away.

I'm so sorry you have suffered for so long. Here are a few tips for you tho:

1. cardinal rule!! no ice, no ice, no ice.....
2. No iv's or needles in arm with rsd
3. no blood pressure cuffs (causes veins to constrict thereby spreading rsd)
4. No chocolate (drives me right to vicodin real fast)
5. No caffeine
6. Use warm to hot baths with epsom salts.

There is a book entitled "living with rsds) by Linda Lang. I would advise getting it (it's in borders, barnes & nobles and online) I think the others here may be able to provide more advice. Keep in touch and let us know how you're doing.

cattys · 09-15-2003, 03:11 PM

Anet,

Welcome to the forum,

Dayton is correct. You should be getting blocks. Did you ever get any blocks done at all.

This disorder takes away so much from us. My RSD started in my left wrist anf hand.

I hope you make yourself right at home here.
^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^* ^*^*^*^*^*^*^*^

cattys

riceneuroni · 09-15-2003, 06:39 PM

Hi Anet, Welcome to the Board

Sorry you're having such a time of it. This takes so much out of us it should be illegal.

Just wanted to say hi and welcome since I don't think I can offer much advice. You've had yours as long as I've had mine. My docs came up with a diagnosis within a month of symptoms - but they still never recommended blocks. I guess it's just the luck of draw who you get and what they know.

I've been on my own and have come up with lots of ways that work for reducing my pain. Maybe something will help for you, maybe not. Hope you have a good night.

Here's what I do and don't do:
I don't use the effected areas as much as possible (for me, that's my feet.)
No sugar whether from candy or fruit (but chocolate doesn't bother me. Hurray!)
For awhile B12 shots knocked out the pain then Methylcobalamin B12 tablets did. Now neither work, but it was nice while they did!
Cutting out gluten helps me a lot.
No direct sunshine or cold
No touching - not even light clothing for me.
I'm sure there's more, but these are the biggies I can think of right off.

Hope you get lots of suggestions.

brighteyes_007 · 09-15-2003, 07:41 PM

Hello,

I am brand new at this also....I hate it like everyone else in here.

I am respondig to your question of Advil and Tylenol effecting your liver.

Yes Tylenol will in very large doses effect your liver. If the dose is large enough it can kill you. There are many teenagers that unfortuantely has found out this information and try to commit suicide using Tylenol.. What they don't know is that it will destroy their liver. I am speaking of very large doses. If taken properly without surpassing the daily recommended limits PROBABLY note probably it would not cause liver damage. As in all things, it depends on your body and the reaction to medications.

Take care

It really sounds like everyone on this board are very caring people.

Brighteyes