Reflex Sympathetic Dystrophy - RSD

[Matthis1]

Anyone else on the forum have this disease? I was diagnosed in 2003. I don't think giving up analogs is going to help any, but perhaps the weight loss surgery I'm waiting on WILL help at least with my back problems.

I have a Medtronic spinal stimulator implanted with the paddle electrode in my Thecal sac, so this really helps with pain relief, but I can only keep it on so long. After a few days, it irritates the nerves to the point of keeping me in pain that I can't control.

If you've never heard of RSD, just google it. Anyone can develop this disease and there is no cure.

 

[jj2]

Well, I for one, have never heard of this but I hope someone comes along that you can talk with.
I do know, from my own experience, that back pain can reach the point of being intolerable.
Also my hubby is disabled because of a neck injury---I imagine you live day to day pretty much like he does.

For those who want to read up on this, here is a link:
Complex regional pain syndrome - Wikipedia, the free encyclopedia

 

[Little Girl]

I've had RSD for four years now. I don't have a spinal stimulator, but instead use an Empi IF 3WAVE®. It doesn't help with the pain, and I can only stand to use it twice a week on a good week, but it does help with the swelling. Also, the company offers phenomenal support.

A great website to go to is the Reflex Sympathetic Dystrophy Syndrome Association page. They promote awareness, offer educational materials, refer you to pages where you can find others who have it, and raise funds for research. I especially like the educational pamphlets they have that you can print out and hand to family, friends, and even medical professionals.

Quitting analogs most likely will not help the RSD any, and may even make it slightly worse if you go off of nicotine since it has anti-imflammatory properties. But your lung function will increase when you quit analogs, and the better you can breath, the better every cell in your body can breathe, and this is always a good thing.

Something you might want to look into is seated Tai Ji. It's amazing what it can do for the body:

​

I just got the wheelchair Tai Ji Quan DVD and am going to learn it thoroughly starting today.

 

[AngusATAT]

I've had it for about 20 years now. I had a workplace injury to my right knee, and it wouldn't get better. It actually became more and more painful. It was about a year before my doctor diagnosed it.

So I've lived with the pain 24/7 ever since. Sometimes it gets to the point where I'll take a couple of painkillers, but for the most part I just try to ignore it. Some days I am more successful at it than others. My wife can usually tell the bad days by how cranky I get, lol.

 

[my2heartboys]

I don't have RSD, but do have fibromyalgia as well as chronic fatigue (and a couple of other things thrown in as well). I, too, live with pain everyday. To me it has become "background noise." That is about the only way to describe it and there are days when the background noise is louder than others. Problem is that with the chronic fatigue, pain meds are not really an option as they make me want to sleep more.

I didn't know that nic had anti-inflammatory effects, though. Nice to know.

Anne

 

[Little Girl]

I've had it for about 20 years now.

I'm sorry to hear that.

So I've lived with the pain 24/7 ever since. Sometimes it gets to the point where I'll take a couple of painkillers, but for the most part I just try to ignore it. Some days I am more successful at it than others. My wife can usually tell the bad days by how cranky I get, lol.

Aw, hopefully she's understanding about it and helps you out with it.

I don't have RSD, but do have fibromyalgia as well as chronic fatigue (and a couple of other things thrown in as well).

I'm sorry to hear that, too.

I, too, live with pain everyday. To me it has become "background noise." That is about the only way to describe it and there are days when the background noise is louder than others.

That was really well described, and I'd say it's similar in RSD, except that we also have loud moments on the quieter days.

Problem is that with the chronic fatigue, pain meds are not really an option as they make me want to sleep more.

I know just how you feel! I don't have chronic fatigue, but pain meds remove me from the here and now, so they're not a solution, but rather an unattractive alternative.

I didn't know that nic had anti-inflammatory effects, though. Nice to know.

Yeah, it's refreshing to find out that there's some good in it:

• The Good Side of Bad Nicotine
• Immunosuppressive and Anti-Inflammatory Effects of Nicotine Administered by Patch in an Animal Model

But at the same time it's a powerful chemical that's being introduced into the body, and it does have negative side effects:

• Nicotine Side Effects | Drugs.com

In the end, the less we add to our bodies and the more we're "just us," the better.

 

[Matthis1]

So I wonder what can take the place of the anti-inflamatory nature of nicotine. You know, I've had more pain since I stopped smoking..... I thought it was just a bad 2 weeks I was going thru!!

 

[Little Girl]

It might be. Stress is a big factor in how bad of a day a person with RSD has, and quitting smoking is stressful.

How are you doing now that it's been a few days more?

 

[Empress Kitty]

this is an excerpt from another post of mine in a different thread:

I hate being in pain it is torture! I can't even have intimate relations anymore because of the Allodynia (hypersensitivity to touch for those that do not know the term, being touched in my affected area feels like I am being sliced with razors, clothing rubbing my skin, heck even a breeze can hurt me also cold sensitivity to the extreme: I couldn't swim in my parents pool it was too cold and hurt. It was 86 F I can't be more than 6-8 F below body temp) plus the constant burning pain OMG! Like being doused in NAPALM and set ablaze! Even on all these painkillers its never below a 6/10 and thats a good day! It gets waaay higher on a regular basis. My affected area is my left side from toes all the way up to my shoulderblade but there are three main "epicenters" that are the L knee (where i had the surgery for chondromalasia which triggered the RSD and needed the surgery after a car accident where I wasn't even driving!!!) my hip and a few inches below my L scapula. but pain is still present in the rest of the affected area (just now as severe) OH and I already have the deforming of my hip joint and my knee and tibia and fibula are both bowing on the left side (yay for RSD causing rapid osteodegeneration. BTW did I mention I am not even 25 yet? I'll be 25 on December 19 2011 and the RSD happened right after my surgery Aug 25 2005 so I have had this disease for almost 6 years and had pain for a few years before that though if I could go back I WOULDN'T have had the surgery that ruined my life... I am well on my way to a wheelchair and already need a cane to walk I also don't sleep much. The pain keeps me awake and if I move in my sleep I wake from the pain. Loss of sleep causes cognitive (thought speech and memory problems) in a lot of RSD patients(Me included). I have trouble remembering things, I repeat myself like a 90 year old Alzheimer's/Dementia patient, and I sometimes take 5-10 minutes to find the word I am looking for in a conversation. Even simple words I have used a million times before. I also recently found out that RSD is the most painful thing you can have (it tops the McGill pain scale at a whopping 42!!
I just got a new doc and omg I love him! He is doing all he can to help me. He has me on a 2 day patch rotation now instead of 3 (I was withdrawing every 3 days on the 72 hour cycle, they wore off for me after 48 hours and that was I have been told fentanyl is WORSE than heroine for WD I take 4 10/325s a day on average (sometimes more sometimes less but I have to make sure I keep it in balance as I am scripted for 4/day)
He is working with my insurance to try to get funding for me to go to MAYO and be more of a human guinea pig :sigh:


BTW Sorry for the novel here, but I want to get my story out and talking with others who know PAIN (not pansy little crap) but REAL pain. If any want to know more, ask me. This is rough on sufferers and their friends and families alike.

IMHO living with chronic pain is worse than a terminal illness, at least if you are terminal the pain doesn't last forever... again just IMO your view may differ.

Love and Peace
~Kitty

Find the thread here:http://www.e-cigarette-forum.com/forum/new-members-forum/180494-ok-i-think-least-today-i-give-up-i-cry-uncle.html

Other useful links:

What is RSD?

American RSDHope

www.rsds.org/

 

[St. Nick]

I also have RSD, since 2003. I'll be glad to talk about it to anyone interested. It's spread to my arms, legs, back, and chest, and I have 2 Medtronic Stimulator Implants to help with the pain. 26 surgeries, the last 4 in Sept. and Oct. of this year. Mine is getting worse fairly fast. People who don't have this disease have no idea what real pain is, especially the burning, clothes rubbing, and being touched on the wrong places.