Hi Susan

Welcome to the forum

In one of the very valuable links posted by Roz/Buckwheat, a general "overview" of RSD:
http://appneurology.com/showArticle....leId=196513289
it says:
"Although opioids are the gold standard for treating acute pain, their use is highly controversial in CRPS.6 "We know that opioids cause hyperalgesia," said Harden. "If you have a drug that causes hyperalgesia and a disease that is characterized by hyperalgesia, how logical is it to use that drug in that disease?" Oaklander agreed that it was theoretically possible for opioids to worsen CRPS, but she said that this should not prevent physicians from prescribing opioids for certain patients who have CRPS. She did, however, caution that the lowest effective dose should be used."

So this applies to vicoden, oxycodone and oxycontin (anything with morphine in it)....may be worth trying to find a substitute for the vicoden to see if it lessens the sensitivity. May help a bit. (Didn't do a thing for my RSD anyway personally!)

BTW I went through the desensitization, it was a great help, though very hard at first...

Oh, a small request - would it be possible to type in maybe just small type, lose the caps - many of us have blurry eyes, that "mixed type" goes jumping all over the page for me - meds + old age = blurry vision !
all the best!

Thanks Artist - how are you doing? I know I should post on another bit ...

The blurry eyes thing is not good..- Susan's caps do make reading quite difficult.

Hope you are doing ok!!

Rxxxxxx

oops = forgot to say -->

desense is totally worth it (though you don't feel like it at the time) and it does REALLY help - I never thought it would - but seriously - go for it....

Rxxx

Hi Frogga
"wow" Lots Of Information You Will Never Know How Much I Appreciate Every Thing You Said You Sure Know What I'm Going
Through With The "sensivity" I'm On Vicodin Doesn't Help The Dr.
Is Wanting Me To Take Morphine Wow Haven't Done So Yet- Have It
In There Scarde Of It Do You Think It Would Help With The Sensitivity? I Will Sure Try Every Thing You Told Me I Printed Off
Your Note Will Take It To Dr. With Me On What They Gave You.
The Cold Thing I Swear Some Times It Is So Bad Wear 3 Pr's Of
Socks And Thank's To Rsd Hubby I Did Try The Heating Pad On
Back That Helped I Even Watched A Tv. Show With My Husband
Air Just Feels Good Till I Get Cold.if You Don't Mind Let Me Know What Med's You Are On

Thank's
Susan

Hi Susan.

Can I be really difficult and ask if you can not type in capital letters if possible? Sorry -it's just I have a real problem with blurry vision and can't read a whole email in capitals - I just had to get one of my flat mates to read it to me. Thanks!

Meds - I am no longer on clonidine - but I used to take that for the hypersensitivity. I agree with Artist - (she knows this stuff!) that morphine does cause a wind up mechanism in your brain which leads to you being more over sensitive. HOWEVER - if the morphine has been prescribed then it is worth starting it and discovering if it helps. Is your pain "only" the sensitivity or is it other pain? (I have sensitivity but also have severe pain pain). If you also have non/ sensitvity pain then giving the morphine a go might be an idea. I think that most of us on this forum have take it for a while - in the past I have taken MST (280mg)/ Oxycontin/ oramorph (up to 10mg 2hourly)/ methadone/ fentanyl (125mg) / etc etc... also anti eplieptics etc.

There is a new med on the market which some people have had great success with called Prialt.

However - it might be that it is worth working on the desensitisation with a therapist to try and reduce the sensitivity. So which part is most sensitive? if you wear a sheet doesn't it hurt when the sheet brushes against you? (shudder)???

I now take ketamine (oral), Dihydrocodeine (sort of v strong vicodin I think), Diazipam (Valium), Baclofen (a muscle relaxant), triphenidryl (another muscle relaxant), paracetemol, domperidone and diclofenac.

with meds it is really experimenting with your dr to discover what works, in what doses and in what circumstances.

Also --> can you not wear shorts and a vest (tank??) top? it might be more comfortable and help you to stay warmer - also if you wear a hat that stops you from losing so much body heat.

So can you walk around and do stuff?

take care

Rosie xxxxxxx

Hi Artist
" Know more caps " my husband is allways on me about this so sorry
sure don't want to cause any one any more problems let me know if this
is to small--why haven't these Dr's said any thing about the Vicodin all the
$$$$ I have spent I bet you any thing your " right" how do I get off what I'm
on ? also on Oxazepam (serax) two a day 15mg. each for panic attacks
tryed valium once had major panic attacks just tryed once maybe I quit
the oxazepam to fast what to do now I guess I won't try the morphin--I think
the last shot they gave me in my neck did help with the burning in left arm
and thumb feet are burning a little now hard for me to hold with my left arm any pressure makes my arm really burn--the thumb and arm pain!!!!!!!!!!
this all started after shingel's also I was a manicurist by trade I think I have
just over used my hands really miss seeing my client's--don't get out much
not worth puting the clothes on ? the cold live in Michigan not by choice--
wonder what I could take for the pain?& panic attacks I also take zoloft at
night--pills just sick of it. I just don't believe these Dr.'s they have to know
this just agervates every thing.The best thing that has happened for me in the last 4 yrs.Is the advice I have gotten in the last 2 days.
can't find the spell check on this sight? T
Thanks Susan


.

lost my connection and my post.

hi susan

sorry to say we don't have a spell check feature here. nobody really seems to mind the typos and the errors. thank goodness..since i'm a typo queen.

the default setting on the font size is a 2. here are some examples of the larger sizes. you change it by the little arrow next to the number. no real change until about 4 or 5.

3
4
5
6
7

putting breaks in the paragragh helps too. makes it easier on the eyes.

i'm so sorry you are having such a rough time. you have an awesome support group here.

Hi Froggy,
" Know caps so sorry " let me know if this is to small yes sometimes i wear
a pair of real short silk shorts then I get so cold if I 'm put on the spot and I
have to wear a top I turn it inside out still misserable the sheet is so old
and so soft for some reason if my shoulder's are bare I guess the air thing
getting to shoulder blades and shoulder makes it better--crazy I know I tuck
the sheet around my breast off of my shoulders--the more I'm hearing I
really need to get off the med's I'm on how ? I was a manicurist by trade
can't use the left arm very well "know pressure" on it it will burn and hurt
you know, I will sure ask my Dr. about the new med what a night mare this is--home most of the time Dr. after Dr. found out more the last couple of
day's from all of you then the last 4 yr's.What does the clondine do? did
you have any side effects any of the med's you were taken or the ones
you are on now?
Thanks again
Susan

Hi Sarah

Thanks - that type face is much easier for me!

It sounds like you need to discover the sort of shops that I (if not the other people on this site) frequent. I live in very soft clothes -they are an absoloute must. I also live without seems...(sp?) as they really hurt.

I am not sure what you are like with pressure - but I wear skiing trousers (salopettes) now - to deal with the cold - they are fleece lined and lovely and warm (my legs are still ice cold but they don;t feel as cold - which is always good!!! I also wear the softest socks ever - they are made of very soft wool and go up to my knees - they are agony to get on but once they are on the screaming of my nerves calms down. Have you considered a "boob tube?" (I am not sure what they are called in the US - basically it's a piece of material that is circular and goes from your armpits to your waist/ hips. I tend to wear alot of fleece under my "real" clothes/ braces - mum made me a fleece neck warmer which goes down on to my chest and across my back - sort of like a poloneck without arms.. it works really well. Oh - also - if you soak your clothes in conditioner then they go REALLY soft.... it's totally the way forward - my carers soak some of my clothes - the ones that go next to my skin - I am trying to get over that bit - but failing atm.

It sounds like you need meds short term to get to grips with the pain - most of us on this site need meds to get through the day and to have any form of quality of life. It is hard - but we all live with this in some form or other. I really feel you should give the morhpine a try if it has been prescribed to you - if you don't try it you don't know whether it will work - it might not help the sensitivity but it might help other sorts of pain that you are getting - also unless the drs know how you react to it they won't know what the most succesful form of med will be for you --> so it might not help the sensitivity but it might help other parts.

You must miss your job a lot - it is a big change to go from being active and working to neither. I miss all the things I used to do before RSD - like play the double bass or be able to go out with my friends (I got this when I was 16).

Clonidine is (I think) a calcium channel blocker - I'm not quite sure how it works - but someone like buckweat (Roz) could tell you I'm sure. All I know is that it is often useful in reducing sensitivity. However, the only real way to improve it is working with a therapist on desensitisation - do you have OT's in the US? they are sort of like physios - but they deal with occupational therapy.

I don't get many side effects from my drugs - BUT - my drs have carefully tailored the doses and the different types to reduce side effects and to increase efficency. Basically, they allow me enough relief to study and for me to be able to go to lectures and to allow me to have the ADL (activities of daily living) done. They aren't a cure - but they give me a far higher quality of life than if I didn't take them. The worst side effects are constipation/ vomiting/ diarheeoa (why is that such a hard word to spell!?!?), fatigue/ sleepiness and spasms.

Hoep this helps a bit

Love

Froggaxxxxxxxxxxxxxx