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.

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

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

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

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

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!