Went to my doc.'s app. ....
 

Fibro
 

I have been told I have Fibro too. It really doesn't matter at this point. The treatment is pretty much the same- if you google it you will find a lot of article..It is much more common then RSD.

Deb

I was diagnosed with Fibromyalgia in 1989. It was determined, from my medical history, that I have probably had it since birth. I have had muscle pain my whole life. I had pain in my legs that I remember curling up or rocking in the corner of our couch crying with it as young as 6 or 7 yrs old. My Mom even took me to the doctors, this back when parents didn't run their children to the doctor for everything under the sun. He said it was of all things "growing pains". I believe they have determined there is NO such thing as growing pains haven't the? *LOL* If not, they should!!

The pain of RSD has over ridden the Fibro pain for the most part these last 5 yrs. I honestly didn't think any pain could out do Fibro pain, but I was most certainly wrong. Fibro pain would literally knock my sox off!! I would miss work periodically due to Fibro pain & had it set up that when it did, they could not hold those days off against me as I would use Federal Family Leave Act for those days. I could use up to 3 days a month. It was especially bad in the Spring & Fall when there were lots of weatjer fronts moving thru. The Barometric Pressure changes were devasting for me especially the Lows, which btw are still bad for me. Here in California the changes in weather are not as severe or as often as they were in Iowa. But, like I said, before RSD I also did suffer horrible flares of Fibro pain. Now that my RSD pain has been more in control, I do suffer from Fibro pain again. It is utterly two completely different types of pain. I can absolutely tell the difference from when RSD or Fibro pain is flaring & when they are both flaring. I took Vicodin then Norco for Fibro pain when needed. Neurontin did not help the Fibro pain for me. Now I have a few real time friends with Fibro who say Lyrica has absolutely changed their lives for the better. Has literally given them back their lives. I do not take much Lyrica anymore as I gained way too much weight on it & all I did was sleep while taking higher doses. I only take 50 mgs at bedtime now. If my feet are flaring with the burning pain of RSD I might pop an extra 50 mgs to help cool them back down. I do however take 900 mgs 2x's a day & 1200 mgs 2x's of Neurontin for a total of 4 doses. I truly can't tell you if Lyrica helped or Neurontin helped with Fibro pain this time around or not. Before RSD I would feel as if I walked on bruises due to Fibro. Now it is more a bone deep pain in my feet, when they don't burn like smoldering coals or feel like they are thawing out from a deep freeze, or numb with a pins & needles affect (or is it effect? just can't remember which is correct anymore) or cramping etc etc etc. Sometimes now when I combine Aleve with what I take for RSD pain (morphine with oxycodone for BTP) it helps with the Fibro pain in my muscles.

What I am getting at tho, is that they are, atleast for me, two completely disparate types of pain.

Not sure if any of this was helpful or not. And I sure hope it wasn't too confusing a read. That happens when I write now days *LOL* I did reread this & it made sense to me anyway as is *LOL* but then what can I say? *LOL*

Good Luck,
Debby

Links:

National Fibromyalgia Association
http://www.fmaware.org/site/News2?pa...rticle&id=7355

Dominie's Fibromyalgia & Chronic Fatigue Syndrome Homepage
http://www.fms-help.com/

I have been living with fibromyalgia all of my life but only knew the name about 8 years ago. The only things that really help for me are cutting out red meat and eating healthy and walking. Believe me I know the feeling of the pain so bad that you are laying in and need to go to the bathroom so bad but you look at the floor and the thought of the pain of your feet touching the floor makes you want to cry. On good days or not so bad days try to walk, it really does help.:grouphug:

I have not been diagnosed with fibromyalgia, but my understanding is that it is pretty close to the same as RSD. How true is that? All I know is that my left side from my hand all the way up to my whole entire shoulder and sometimes my neck hurt so bad that it is getting harder to move it. Could anyone tell me what the difference is between the two. Desi I am so sorry to hear that you have been diagnosed with fibro as well. I wish you well and hope it doesn't get you down to bad. Remember we are all here for you if you need someone to lean on. We will do the best we can. Take care and soft hugs sent your way.

Sincerely,
Screwballpookie

So sorry that you have recieved a diagnosis of Fibromyalgia, Desi ((pain-free hugs)).

I haven't been officialy diagnosed with Fibro, although I do have a lot of the symptoms such as fatigue, tenderness in certain spots etc. I read somewhere that you have a much higher risk of developing Fibro if you have RSD or other chronic pain conditions and that in a lot of situations RSD and Fibro go hand-in-hand.

I wish I could help you more, just know that we're all here for you if you need anything.

Pain-free hugs :hug:
Alison

Awww Hon,

You don't deserve it. I agree with others that it often goes hand in hand with rsd. At least now it has a name and you know that you aren't losing your mind. I hope they can get it under control and get you feeling better now. I always joke that I don't know who I made so mad at me, but I'm sorry.lol... How is Bill doing? you have to take care of yourself or you will not be any good to anyone. We need you..

Hugs
Mary

Oh yah,
I just remembered what I used along with Vicodin or Norco for Fibro pain. I use to give myself IM Shots of Toradol. Toradol is an injectible anti-inflammatory medication. I was getting it originally for a headache caused by whiplash from a car accident I was in in 1991. Had that headache for over 7 yrs all told. But it seemed to help the muscle aches I had from Fibromyalgia also. My doctor back in Iowa sent me to the hospital & had one of the OR nurses teach me how to give myself IM injections in my thights. It was one of the most difficult things I had ever done sticking a 1 1/2" needle into my thigh but the headaches were so bad I did it anyway. Sometimes the thought of hitting the ER to have a shot of Toradol just wasn't feasible. It also saved us alot of medical bills.

But I don't think it is anything that anyone would want to use who has RSD. I know I have NOT used it since RSD found my body. But I also don't notice my Fibro pain like I use to either. RSD pain so over rides the Fibro most of the time.

As far as the difference in RSD vs Fibro pain, well the burning pain is not a pain I would describe as ever having when I just had Fibro. I would get the tingling & numbnes, but at the same time deep deep muscle aches with Fibro. Also the tender points were like HOLY COW!! hurt to have touched, yet sometimes having them rubbed really really hard hurt soooooooooooooooo gooooooooood.

I just wanted to share what else I use to do for Fibro pain.

DebbyV

feedback
 

Not sure if this will work as I'm a new member. I am just being worked up for what may be wrong with my body. I do know that I have HHV-6 or Human Herpes Virus #6. It can cause all sorts of things. I am also being treated for fibromyalgia which is pretty generic aka chronic fatigue. I find that I need to take antibiotics at times for upper respiratory infections/gastritis. Also, take Valcyte for the HHV-6. If you go to the HHV-6 Foundation site you will get a lot of info on this devil. You will also wonder if you too have it. I want to look up the disease you have as I have not heard of it. It seems that the symptoms of all of these neuro disorders are quite the same. Just may attack one organ/system more than another. If you can give me a good website on your disorder I would appreciate it. Also, look at the Marshall study. Very interesting about the drug Benicar....spinkydee

Hi Spinkydee and welcome to Neurotalk.

There are a number of sites about RSD... one being www.rsds.org

We also have a Useful sites, links, articles section that has a wealth of information regarding RSD/CRPS:
http://neurotalk.psychcentral.com/thread247.html


Please feel free to roam around the boards and forum.... If you have any questions please don't hesitate to ask. Someone will always be around shortly to help you in any way that we can.

:)
Abbie

Hi Naja! I used to walk 2-3 miles every single morning. walking makes this fibro worse! I'm lucky some days getting up and down our stairs. It is so darn painful all over my body. It feels like my feet are crushed by walking!! I went to our local fair and had to leave. All we did is walk, sit down to eat, walk, walk walk!! I was in bed the next day and couldn't do nothing, as I ached all over. I still am in great pain from my RSD, now, this Fibro. It's kicking my big butt all over the place! LOL thanks for posting, Naja. ~Love, Desi

Hey Pookie! How ya been? Yes I believe this fibro is pretty close to RSd. Sometimes, the RSD is so darn painful, I told my doc, that all I want to do is sleep, I'm depressed over all this. I want to keep to myself, I don't even want to see my older sons at times, don't want to even answer the phone. My son's are starting to understand, but then sometimes, when they stop by, when I am hurting so bad, I put a smile on my face and act like I'm ok, so they don't have to worry about me, because their dad is so very sick. His kidney's are bad now and he is still on oxygen, very sick. These diseases are just really bad. Can't concentrate, sometimes I have trouble with my memory and don't even remember where I left something?? Anyway, Pookie, so very sorry to hear about your entire left side. did your doc. say the RSD has spread? Please keep us posted on that. Fibro starts out slowly, then one arm foot leg may hurt, ache so bad. then the fibro hits the deep joints of all over pain soon, and by the time you go to the docs, he will tell you what you have. I have never heard of this disease, until he told me what it was and I googled it. And yep, I have all the symptoms of fibro. RSD hurts the worse, a close second is Fibro. I will keep you in my prayers for your pain. I am sorry you have this pain, pookie!! Love ya, sweet friend, ~Desi

The best exercise for Fibro pain is swimming in a warm pool one that is between 89 & 92. No colder. If you can find a Physical Therapy/Rehab place that has a pool they are all usually that warm. They also usually have a program that people suffereing with Fibro can do. The closest for me is 45 miles away so I don't go but wish I could. Back where I lived in Iowa they had a PT place with a pool like that & the Rehab people there set me up with my own regimine. It was wonderful.

When first DX'ed with it in 1989 I swam in the public pool everyday & had the Fibro go into remission until 1997 when I was in a car wreck & it then it was back with a vengence. I do know being in shape helps more with Fibro pain than when not in shape.

The feeling in your feet like they are bruised could be the Fibro, mine would feel like that before RSD when in a Fibro flare. And yes walking on them did not make them feel better.

Hoping you & anyone else suffering with Fibro can find that warm pool to work out in. It is wonderful.

DebbyV

Wow...
This is really interesting. My rsd started in my left foot about 5 years ago. For the last 3 years or so, when I could walk, and almost all the time now, when I walk it feels like my feet are so very bruised, and like I'm walking on glass. I haven't mentioned it to the drs. because now that I have the scs I keep thinking that it shouldn't hurt. So I just pretend that it doesn't. Sometimes I feel like the only way to get around is to crawl on my knees, but I just tell everyone that I have to sit down, that it hurts a little. I wonder??????

Hugs
Mary

Alot of us with rsd seem to find out we have fibromyalgia as well. Most of the meds they are treating people for fibro are meds we are given for our crps. One being neurontin which lyrica is the new name. Cymbalta was given for depression as well as diabetic neuropathy and now approved for fibro. I have a forum with lots of information on fibromyalgia as i have that but its at the bottom of my list. I truly thing no matter what people say they will find a link similar to rsd in fibro.

If you wish to visit heres a forum for rsd


Jo