Advice
 

HI
FIRST TIME FOR EVERY THING, SURE HOPE SOME ONE OUT THERE CAN
ANSWER SOME QUESTIONS I KNOW THIS SOUNDS STRANGE WHAT EVER
HERE IT GOES, SEEN MANY MANY DR'S EVEN BEEN TO CLEVELAND CL.JUST
LAST MONTH A DR. TOLD ME I HAD R.S.D. BURNING IN LEFT THUMB AND
ARM, EVERY THING HURTS ANKLE KNEE ON TOP OF THIS I CAN'T WEAR
CLOTHES I GO AROUND IN A SHEET EVERY PART OF ME IS SO SENSITIVE
ANY THING OR ANY BODY TOUCHING ME FEELS LIKE MY WHOLE BODY IS JUST
AN OPEN SORE -BREEZE HURTS, SHOWER'S ARE A THING OF THE PAST. TRY ED
MANY MED'S INJECTION'S DON'T KNOW WHAT TO DO FROM HERE. CAN NOT
HANDLE THIS MUCH LONGER, ON VICODIN THAT ISN'T HELPING WITH THE
PAIN.VERY VERY DESPERATE
SUSAN:confused:

Hi Susan,

Im sorry that you are feeling so crappy, but know how it is!!! unfortunetly! Have they done any blocks for you?? Vicoden wont touch RSD pain!! need something lot stronger. Also are you taking neurontin?? or any seizure type drug. these help with the RSD pain and help with the sensitvity. When my RSD flares up to a point that i want to cut my foot and leg off myself, i use epson salt soaks!! this also helps with the sensitivity and also takes some of the swelling down!! Heating pads are also really good... i would ask your docs for stronger meds.. vicodin wont touch this and is prob like taking candy for you.. you dont feel any different when taking it!! Also Baclofen has saved me from the muscle spasms and the pain too!! might want to ask abou tthat!!

Hope its helps!!:hug:
AMber

Dear Susan

I am very sore to hear what you are going through --> big hugs. Have you asked your Dr to refer you to a pain management dr? this doctor may be able to help you find approrpiate meds that reduce your pain abit so you can start de-sensitisation theapies etc...

I have full body RSD and I remeber just how painful the alloydinia was (and is!) and the "unable to wear clothes" thing.

Ring your GP (PCP) in the morning and rquiest an immediate transfer to pain maanagement dr.

Good luck and welcome!!

Rosie xxxxxxxxxxxx

Sorry to hear about how your feeling. Although I do not have RSD myself my husband had it first in his leg (1995) and now it is in his arm due to a ulnar nerve transposition.

With his leg we found that hot-tub therapy really worked - It sounds like something tho that would not be good for you if the hot water is bothering you.

How about those blocks? I saw RSD_Angel mentioned them too - That would and should be a start for you. Ask your Dr about them and if you do not feel your Dr is taking care of you the way he/she should immediately seek another. You need help right away to insure this does not get any worse on you.

You'll be in our thoughts and prayers. Keep us posted.

Thank's
 

Thanks For Responding And Answering Some Much Needed Question's
Yes I Have Try Ed Neurontin Many Of The Med's In That Field Nothing
I Mean Nothing Is Helping, Now I'm On My Second Pain Clinic They
Have Gave Me 2 Nerve Blocks In The Back And One In The Neck Do I
Let Them Do This Again When Nothing Is Helping Is This Dangerous ?
What Do You Mean By The Sensatizing I Have Called Several Phy.ther.
Places They Never Heard Of Such A Thing-- I Swear I Can't Take Much More 4 Yrs. How Many Dr's And $ Have I Spent Just Last Month I First
Heard The Term Rsd-- I Mean I Wear Nothing But A Sheet Any Suggestion's On A Good Dr. Can Hold On Much Longer-- I Guess I
Will Have To Move Into The Other Bedroom Now If My Husband Rolls
Over His Leg Or Arm Touch Me I Mean I Jump And Scare Him To Death,
If I Wasn't Going Through This My Self I Would Think Some One Is
Making Up All This. Does Any One Have The Sensativity All Over ?

Thanks For The Advice Susan

Hi Susan,

I'm so sorry to hear how much pain you're in. I had to have a series of 5 blocks, these are Stellate Ganglion Blocks, for my one arm. It helped VERY much! Did you have Stellate Ganglion Blocks, or Epidural Blocks? The SGB's are used mainly (if not only) for RSD. You need, usually, several...not just one or two.

Have they talked about trying you on Lyrica? It's a newer form than Neurontin. Less side effects, I think. Did you give it some time? What about Cymbalta? Or, another antidepressant that helps with pain?

I agree also that Baclofen helps tremendously, too. It's for spasm. Keep reading here on this site. There are so many different methods that people talk about here that have worked for them.

I agree with an earlier post that you definitely need a Pain Mgmt Doctor. Regular doc's....or Orthopedics...just don't have the expertise to work with RSD or any other chronic pain condition.

Don't give up hope! We're here for you!

Let us know if you ask your doc about a referral to a pain mgmt doctor.

(((hugs)))

Denise

Rsd
 

Hi Denise,
Yes The Injections I Have Had Were Epidural I Guess 6mg. Of
Betamethasone 4mg. Lidocaine Cervical Injection Epidural They
Have Written Down--i Was On Lyrica For A Long Time No Help
Also Cymbalta Nothing. I'm Going To A Pain Clinic Now They
Are The Ones That Have Given Me The Injection's Been On So
Many Med's I Don't Know Where To Turn Any More 4 Long Years
With This Just This Last Month The Dr Said He Was Treating
My Rsd Pain Upper Extremities I'm In Michigan I've Been Told The
Clinic Here Not To Even Waste My Time. Have You Had Or Have Any
Kind Of Sensitivty If So Or You Know Any One? Please Let Me Know
What To Do--i Feel Like I'm Living In A Third World Country Know
One Can Help, A Year Ago I Was Going To Another Pain Cl. Here
Got Know Where There He Said He Didn't Know What Was Wrong
With Me Have Ran Every Nerve Test There Is To Do All Negative
Would Appreciate Any Leads Help Any Thing Now I Don't Know How
Much Longer I Can Go On.what Is Baclofen? Been Waking Up The Last Few Nights Wet I Guess Sweating

Thanks Susan

Hey Susan

Sorry - I tried to type an email last night but the computer deleted it - VERY frustrating.

I do understand the type of pain that you are going through - when I first got this I could stand nothing touching my arms or legs. I had to wear very tiny shorts and vest tops - which is NOT good in the UK. I couldn't bear to go out of the house because the air might touch me and I was scared of sleep in case my arms or legs or anytihng would touch the bed. I used to sleep with my arms and legs hanging over the bed in case I touched anything.

However.. there are some meds that can help - such as calcium channel blockers like clonidine - which has helped. However, it is desensitiastion which really works - I PROMISE you that the pain is worth it. Seriously, before I started I NEVER believed I would be able to toucha keyboard again, put my feet on the floor, bear to stand anything touch me, be able to go outside etc... I REALLY never believed I would again. But I can now.

Desensitisation involves getting the nerves used to being touched again - so it means starting with a soft fabric and working upwards- I started with fleece - we started with just putting my hand on it, then moved on to trying to rub my skin with it, then moved on to harsher fabrics etc.. The same is also done with tactile things - like dry pasta, peas etc etc.

Very slowly I learnt that if I could get the sock/ trousers/ sleeve, whatever on and then stay very very still it didn't hurt as much (I have cold RSD so I am always freezing).

The other thing I have found helps with desense is using the softest fabrics and then soaking things in conditioner - my socks are the softest things ever and my carers wash them in bowls of conditioner so they stay really soft and loose.

I know this isn't much help - but if you need someone to talk to about this then I do understand.

Take Care

Rosie xxxx

My husband had 26 sympathetic nerve blocks. That was back in 1995 with no adverse effects as of date. I feel - It stopped the RSD from spreading to his other limbs.

** Just a note - I know I said hubby had it in his arm now which is true but that was due to the nerve transposition - Not spreading of RSD.

Heya

I stopped with the blocks cos they were doing more harm than good.

Have you been evaluated for a pump?

Rxxxx

Hi Susan

Welcome to the forum :Wave-Hello:

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 :Red eyes: - 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


.

:eek: 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. :p

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. :grouphug:

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