[misreable]

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

[RSD_Angel]

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!!
AMber

[frogga]

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

[HubbyWithRSD]

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.

[misreable]

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

[Denise G]

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

[misreable]

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

[frogga]

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

[HubbyWithRSD]

Originally Posted by misreable

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 ?
Thanks For The Advice Susan

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.

[frogga]

Heya

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

Have you been evaluated for a pump?

Rxxxx