Hi Denise,

I too have been diagnosed with both RSD and fibro. I thought my RSD came first (after two failed ulnar nerve surgeries) but then a neurosurgeon friend of mine sat me down and said that I had fibromyalgia and that is probably what caused pain in my arm leading to the surgeries. I don't know, I thought I had the RSD first, but maybe this doctor is correct.

I fought both diagnosis for a long time. I was too afraid of RSD to accept I had it and that may have been a mixed blessing. I am now traveling to see a specialist at the Cleveland Clinic and he has been surprised at my recovery. He thinks it may be related to the lack of medication that I have taken. I was so much in denial about RSD and in so much pain from my surgery, that I could not force myself to get the SGBs or take the medications prescribed. Every time I try, I seem to get so sick from side effects.

I do struggle with RSD because I will tend to get a break from it but then it flares up again. I get so discouraged because I feel so isolated from the world. Like life is going on but I have to sit at home and miss it. I miss going to work, seeing coworkers, feeling vital, having some financial independence, etc. Yes, RSD (and fibro and all these nasty pain syndromes) sure can rob a person of some good years.

Okay, sorry to get down. I have been struggling for the first time in my life with a little bit of depression so I am working through it. Responding to a post is a step for me. I have read these forums for over a year, but I don't write as much because of pain or anxiety. You know, it is like - if I respond then I must be admitting I have the disease. Yes, I think I am still struggling with it all.

Anyway, I hope you are doing well. Also, I wanted to know what you did to get your RSD to go into remission for a while?

Hello and thanks for post I am so sorry you also have also been dxed with both.
At first I wore a catapress patch/Clonidine directly over the useless foot. This is how my Dr. Dxed me with RSD because in several days I could move it and start to put weight on it.
However it still hurt like **** so I wore the catapress patches its a heart med but works on RSD by slowing the nerve impulses .
I took Neurontin for the burning shooting twitching pain and tried most ever pain killer my Dr could think of most hurt my stomach real bad. I now have an ulcer most liiey fro the meds
I was on ibupropen 800 muscle relaxers & antidepresents After developing a rash where I put the patch my Dr put me on Clonidine the pill form it really helped.However.........................
I finally decided that I had had enough pharacuticals after trying a new SSRI that caused me to pass out on the bathroom floor and wake up almost unable to move except for my heart which was racing at 145-165!!!!!!!!!!!
After all this and 3 nerve blocks which did not help but did make it turn into full body RSD (my opinion)I decided I needed a new plan so I slowly went off all meds for 3 years.During this time my discomfort was minimal.
When problems came back it started with my stomach so I started to keep a list of what makes me feel bad.
It was the discovery that I was NOW allergic or sensitive to soy, wheat and dairy that turned things around for me.I also gave up cafein for 3 years.All forms of it except green tea boy was it hard to give up chocolate
I really thought the rsd was gone until I went on a cross country vacation for a month when I got home the pain was back but it was different instead of burning now I get a lot of all over muscle cramps and back, shoulder and neck spasms that last for a days.
Just when I was learning to deal with it again a stressful thing happened with my daughter and grandson.My Dr thinks maybe the stress and lack of sleep gave me fibro on top of the RSD but that's my GPs opinion. I did not think stress could bring back RSD I thought only a new injury could. I am learning stress can be as bad as an injury, for someone with RSD , as it leads to a lack of sleep and for someone with RSD that just spells more pain soooooo now I am back to taking Atenolo ,Soma ,Tramadol, Trazadone daily. &Valuim & Davocet when needed.
I hate meds and being dependent on them but several new books I am reading about Fibro say you need meds untill the flares are under control.
My RSD books say the same thing
What do you think ?Personaly I think it's the processed food.So I have gone organic.Trader Joes is my favorite store.
Take care and feel better soon.
Denise
Sorry the post is so long I am from Texas and come by it naturally LOL

Denise, this is so funny you mentioned Trader Joe's. I just made my weekly run there this afternoon. If I am being careful and watching my diet, I do feel better. But I have to admit, on the way to Trader Joe's I ran through McDonalds and got a medium coffee. I need it to get through my little shopping trip. That is one of my big hurdles to tackle - get off the coffee. Do you think it made any difference when you omitted caffeine for three years? Are you still off of caffeine?

My husband too has said to me several times recently that I am in denial about the diagnosis of RSD. I am lucky because he is so supportive when I need him. It has been hard one him, I can tell, but he doesn't ever complain. Seeing me in pain all the time and no longer able to work has been hard (I am 51 this year and did not plan on retirement until 65). It sure has been a financial hardship on us. Health issues can sure change the course of one's plans.

What makes it worse for me is that I live in fear every day of RSD and a spread. I can deal with the change in lifestyle and social life better than I can deal with the fear of the unknown. I know other posters have said the same thing - they went to many doctors (like me) in the hopes of a new miracle or answer only to end up with more meds and more emotional exhaustion. I think if I can just accept it, then maybe I can put some energy into creating some balance, rather than just going from doctor to doctor.

As for the fibromyalgia, I can't even get a handle on that one. I know I hurt everywhere, it is like all my nerves are so irritated all the time. I can tell I have had the fibromyalgia longer than the RSD. I was just able to deal with it by taking Advil, Darvocet and a few other meds.

I was interested in what another poster (I think her name is Cinnamon) had said recently about fibromyalgia and a connection to viruses we are exposed to. I know for sure I never felt the same after having a really bad case of mono (Epstein Bar) when I was 18-years old. It took me a year to get any energy back and from that time on I had constant aches, sore throats, exhaustion and flu -ike symptoms. This poster said her doctor gave her some antiviral meds and she felt better, along with some other treatments. I wonder if there could be a connection. It is very possible I think since doctors are not yet sure of the cause.

Well, my arms hurt (RSD in my left arm) so I will stop for now.

LIsa

Hello,

My name is Laura and I was diagnosed with fibromyalgia in October 2008. It's been a shock and I read that it presents with trauma and infection -- both are true in my case.

I am interested in the fact that you state that "For years I looked for all kinds of things that could be causing my problems.In the last 5 years I have been to so many doctors I lost count.I have been diagnosed with RSD, Fibromialgia (which I dismissed immediately big mistake on my part) , Arthritis, Mitral valve prolapse,tackycardia, osteoporosis,Stomach ulcer,
IBS ( I think it's because of the meds I take)Anziety and probably a few others I can't think of now as my memory is not what it used to be."

I hear that my diagnosis is a "syndrome" so my pain sensitivity will not go away and neither will my exhaustion. You have successfully raised 4 children. You provide me courage. I ask you whether the pain and exhaustion in your life fluctuates given what you focus on. Mine does.

This fluctuation of perception leads me to believe at times I do not have the disease. I have difficulty focusing on my health and realizing that I am in a ill human body that others depend on to function -- including me!? Is this what happens with you at all?

I, too, was brought up to "get over it.Pull myself up by the boot straps, you know think right, act right and you will be alright.Mind over matter". I accept a spiritual aspect of this and the gift of knowing how human all of us are at times...but then I distance myself. I am so scared that now I cannot live the life I envisioned for myself; I am scared of "me".

But I do not stay this conscious at all times and fell when I read your statement "well I guess I am here today to admit that I need help." I live in rural WI, and I just moved here so it is hard to introduce myself and then have so many needs to want to "complain" about (health insurance that doesn't pay, dearth of deep friends, lack of interesting interactions). I would prefer to be in a position of giving.

I just contacted someone outside the home (for involvement in something called "Lifeline" that allows ill and elderly individuals to remain in their homes). I want to start volunteering, and perhaps obtain a paid position with health insurance. But its hard due to the fact that I don't want to see myself as so ill and vulnerable; I am married to someone who has MS and I am 39. This is all their is.

I am lucky to be able to participate in this community and hear of someone else's life who suffers similarly. Your post reminds me that I am human and OK.

Your note added something to my life because it encouraged me to acknowledge that I am not alone in wanting to disown this disease And that fear given vulnerability remains normal. I wish you continued energy to provide such a beautiful gift of emotional exchanges.

Take care and good luck! You are an incredibly special woman.

Laura

Welcome Laura. And you are not alone. My name is Betty. I was diagnosed with Fibro and other things between May 2008 and Aug 2008. It is okay to ask for help when you need it. I have never been one to ask. If it can be done, I'd do it myself. That is just the way I have always been. Unfortunately, I had to leave a job I loved and enjoyed because of the pain. My rhuemi is still trying to find the right combo of meds to make the pain somewhat bearable to where I don't have to take so many narcotics during the day. I've also learned that you can only do what you can do and you have to take it one day at a time. Nothing more, nothing less. On one of the other posts, I stated we are survivors everyday that we get up even if we accomplish something or not. We have all been dealt a crappy hand physically in life. Just do what you can. When you get down, the pain gets really bad, or just feel alone, come and talk to us. We are all in this together. We do understand. I've come to think of this board as another part of my family that I rely on. Sometimes I don't get on for weeks, and then other times I'm on it everyday, several times a day. I am sorry that you are having to go through this. Please remember you have family here and we are always willing to listen and do what we can. Welcome and good luck with the volunteering. I do hope it works out for you. Please keep in touch with us.

Hi D,
Just 2 1/2 hours from Vegas. 45 miles south/south rim in AZ. Fibro pal although they didnt know thats what I had until a week ago tuesday. Kinda wondering if all these surgeries were neccesary. My little read headed step daughter is a message therapist in LV at one of the huge resorts. I have three grown and seven grandbabies that are my world, just wish I could bare to travel, riding kills me. Tomorrow is a new day, a new way!

Hi WC. You sure are new with your diagnosis! I'm not sure exactly why, but when they first diagnosed me with this I was shocked, dismayed, overwhelmed, even though it isn't 'life-threatening'.

It sure is dibilitating. I hope this post finds you feeling good.

Hello Denise,
Nice to meet you. So sorry to meet you like this! Well at least we will have alot to talk about. Well have to laugh about something


My Name is Charmaine. I live in Sioux City, Iowa. Iam 46 yrs young.
I have fibromyalgia. I have had this thing for 5 years.:mad : I have been on Lyricia for 2 years. I've gained 35 pounds(hate my self and all mirror's). because of the lyricia . I have had alot of side affects from this drug, like the weight gain, my tounge swells up(alot) my vision , nerves on top of head, so tired. And on and on. So my problem is I have tried twice in a year to stop taking Lyricia.
Oh man, I get like really sick, ichy ,cant eat, really tired. First time I lasted 22 days second time I lasted 9 days.
I feel like a 80 yr old .By the way my husband is very , very supportive. He helps me out as much as he can. Could not have asked for a better man! I Tell My husband " I hate to go to bed cause in the morning the pain starts all over again" Not that it ever goes away but at least I got thur the day

Hi I'm Crystal, New drug called Savella comes out in March specifically designed for Fibro and fibro only. FDA approved. Make an appointment with your Rheumatologist now, look at the FMA website or google SAvella. Get ready to try something different. Reports show mild side effects and relief as early as one week. I"ve been trying to start a local support group, looks like it's going to be big, I"m in upstate NY, I also do basset hound rescue so I have lot of connections there. Lyrical made me sick as a dog, I hated it.

Start weaning off the Lyrica now. The day is here to try the new one.
Have you tried trigger point injections? My rheumatologist is the bomb and they work great.
I'm surprised my husband hasn't screamed and ran, especially after my back surgery in November, I can barely do anything yet. I'm so excited about trying Savella and maybe being able to drop a couple pills and have it replace them it's not funny and the time will fly and it'll be on the shelves in no time. I have signed up for email notification for when it becomes available.
I'm just tired of having to bring my cane in order for people to realize I'm disabled. What the back brace doesn't speak for itself?? Duh. I"m 34. Just cause I'm moderately attractive doesn't mean I'm not in enough pain to want to beat the next person that crosses my path. LOL. I hope this helps. Just remember, you're beautiful, inside and out, and hope is on the way.

Hello, hello,

My name is Majo (well, Maria Jose, lol), Im 26, Im from Mexico city...
Have fibro... Just got diagnosed last april, and doc gave me lyrica... It worked, except it made my skin incredibly dry, along with my eyes, my mouth and nose. Also, my vision was "funny" I just had to stop taking it because I got sort of "poisoned", my fingers started to burn like hell and I had like little crystals under my skin After 4 days, Im back in pain I miss my lyrica actually !!!!
I still need to go and talk with doc to see what I can do... Aw. All my body hurts today. I cant type much in the computer.... ouch, ouch, ouch.

Anyway, glad to meet you !!!!!