For the whole 6 years I have had this stuff, I have told my drs. Thats not what I have, and the reason is it just didn't match. A lot of the things did.

My hot to the touch hands, the pain 'sections' were so large... how was I to explain that I couldn't really put it in tiny little circles on an outline of a body. Like, yes that part is super sore when the dr. would poke one of the 'trigger points' for fms, but so were a milion other spots that he would just say, its just part of... blah blah...

My sternum gets so sore it feels like its just going to crush in. My arms swell so huge my fingers look like viennal sausages. My feet get so cold, even in the summer... I live in Florida!

MY pont is... (sorry) Why... why on Earth wouldn't even one of them say... this is RSD. I understand, it has many simularties (sp?) but I kinda would have liked to know, I have been asking silly questions on some really good sites. ya know? I must have looked daft. Like the symptoms above, and more.
Reasearching the wrong thing for a long time.

My question is what do I need to know?

Thank you for I appreciate your time.

still in ponder

Hi - we have a great group on our RSD forum here is the link to it-
http://neurotalk.psychcentral.com/forumdisplay.php?f=21

and one to our Useful Sites, Links, Articles and RSD photos thread -
http://neurotalk.psychcentral.com/showthread.php?t=247

To be honest, what you describe doesn't sound very much like RSD to me, but that may be because you didn't describe everything you've experienced. Did this start off with some kind of trauma? Was it first located in the area of your body that experienced the trauma (especially if it was one limb)? Do you have severe pain from very light touch (like air movement or light fabric brushing your skin)? Is the pain of a burning nature?

RSD starts in one area usually following physical trauma to that area, and it can spread to other parts of the body...but only a very unfortunate few end up with it in their entire bodies, and this process usually happens over months or years. It's a rather terrifying process. After time left untreated, RSD can be associated with progressive physical degeneration, such as osteoporosis and deformity of the effected limb(s) (not everyone gets this part, but many do, especially if not treated). Also, there are other sometimes overlooked symptoms such as nail and hair growth abnormalities in the effected area (some people get overgrowth, some get little to no growth at all).

Sometimes fibromyalgia is secondary to another chronic condition, although it can definitely exist on its own. It's also often associated with myofascial pain syndrome, which can cause extra pain in more specific areas.

I hope this helps you. I'll be looking out for your answers to the questions above! They're not the only questions to ask, but I hope they'll give you an idea about what to talk to your doctor about.

Hi, I am sorry I didn't include very much info. I guess I should have been more detailed. I was a little exaperated.
It all started back in '99.. Sounds like the beginning of a story, yes?
I fell off of my delivery truck, and broke 3 bones in my left leg, as well as pulverized the inside ankle bone, same leg. Now I sport a donor bone there. (and still can't dance) Also in the middle of the 3 surgeries I had an appendectomy, so that made for 4 surgeries in 3 years. It seemed like as soon as I was on my feet (literally) I was going back in for more. I had a hard time, and after-- was really hurting, but thought it was because I had become so out of shape.
We then (maybe a year?) moved to a new house and I was painting the kitchen. My arms starting hurting so bad from holding the paint roller I would drop it, and would have to change hands (amidextrious) both of my arms burned like fire!
This was not the first of getting back into shape, I began that as soon as I was healed from the last surgery. I digress, that was the very first ODD thing that happened, about two weeks later, for no apparent reason my left arm had swollen up so huge, it didn't even look like it belonged on my body, and was so very hot. I freaked, hubby freaked, Mom freaked... Went to the Dr... And the nurse freaked... Needless to say, I went through a battery of test - from lymphoma to a Doppler for circulation, a dang thing that shocked me that made me soooo sore for like a week later, (and 'wasn't suppose to') I went to a Neurologist after about half of the test, and was diagnosed with Fibromyalgia, and sent to a pain Dr. I told them all, it doesn't seem like the dx, I mean I looked it up in NIH... And it just didn't fit. I was blown away by the medicines that I was given... Over the 4 years I went there, I went from everything from morpine to methadone. I had babies to tend to! Ok, so they were about 7, 12, 13, 17... But still I had to remember who liked who, and who broke up with who, and ya know teen things... And my littlest girl, I hardly ever read to her at night! Everyone else did, but not mom, I was in lala land. So I quit all of the heavy meds and stuck to darvocet and hydrocodone.
The pain was so incredible I would near pass out at times, and just cry. Neurontin was a breakthrough. I dropped the hydrocodone. That made life more livable. But the pain is so severe, most of the time it felt like it the medication did nothing at all.
If I were to have to pick one place I wish would never hurt again it would be my left shoulder, in the front. My hands and fingers would be next, then the tendons all over. Do I have both? This is just crazy.
Yes rain hurts, cold is insane... And humidity sets me on my ear. I hurt so bad, I can't lie down sometimes, and just sit up cross-legged in bed, and sleep on pillows piled in my lap. My covers don't hurt.
The fibro-fog... Well, I don't know about that, I do mistake words a lot, like instead of couch, I say porch.. Silly things like that. But I don't think I have fibro fog.
My injury spots do hurt but not nearly as bad as the rest of my body does. I tried to explain to my Mother, who has tennis elbow, or tendonitis, (my kingdom for spell check, sorry) that is what it feels like all the time, pretty much all over. I can't hold a pencil for very long, and have replaced almost all of our dishes at least twice.
On the worse days, 3-5 a week, I can't even pull a pillow toward me. I mean I don't mean to be nasty, but I will stay in bed until I almost pee, because I know how bad it will hurt to get up!

And the kicker if there is one. When I was laid up probably in the first week I experienced something soooo odd, that I don't even share it... All of the injuries were in the left leg mind you. But I felt everything in my right leg.. I mean EVERYTHING, each part . If lasted long enough for me to access the situation become bewildered, call my dad and told him... He thought it was the medicine. It wasn't. It was so very real.

So I hope I haven't bored you to tears... And maybe you can advise me. Or point me to another direction even... I don't know.

I appreciate you replies and the links as well, I have no idea what I have but it has taken any symblance (is that a word?) of my old life away. Everything, work, friends, travel, and making plans... well... how am I supose to do that!
I still have friends, they just don't come over anymore... especially a few at a time.

I hope this gives you a better idea of what is going on down here, and again I appreciate the welcome, and the help.

Oh yeah, Lyrica is the most amazing thing in my whole world! Short of the people of course.

Karen

About the arms and hands symptoms -

[I was painting the kitchen. My arms starting hurting so bad from holding the paint roller I would drop it, and would have to change hands (amidextrious) both of my arms burned like fire!]

you might want to read about thoracic outlet syndrome {TOS} on our forum - some think it can spread or cause sx in the lower body also.
Or it's possible to have TOS and RSD.
TOS forum - main page
http://neurotalk.psychcentral.com/forumdisplay.php?f=24
TOS useful info links-
http://neurotalk.psychcentral.com/showthread.php?t=84

Thanks for the extra info! I agree with Jo55---I know little about TOS, but there are a lot of symptom similarities between it and RSD.

I obviously can't make a judgement in your case...you could have anything, and I'm definitely no expert! I only know my own experience with RSD (12 years and counting) and the stories of many other people. To me, it doesn't sound like typical RSD, but what IS typical RSD? It effects everyone differently.

Here's what makes me think it might not be RSD: the worst pain is not where you were originally injured. Usually, but not always, the first place the RSD hits is the worse. In addition, you said that your covers don't hurt. Not everybody with RSD has extremely severe allodynia, but I think that most do. One commonality that you see in most people's RSD stories is severe pain from the lightest of touches. To the point where a cotton ball lightly touching the skin can bring tears. Not everyone is quite that severe. On my good days, I even wear pants, shoes and socks. It's not really easy though, and I have to have a sock that stays in place to keep my pants leg from direct contact with my skin.

I'm sorry to hear about all of your struggles. Whatever it turns out to be, I hope you find some relief! I first got RSD when I was 12; I'm now 24. It hasn't been easy...far from it, to be honest. But I can assure you that things can get better!

Good luck!

-Betsy