New girl here! RSD veteran. Recently diagnosed with Fibromyalgia..

Eliza,
Welcome to the forum. Many of us here can relate to what you are going through. It's really tough when the doctor asks where does it hurt and you have to say "it hurts everywhere." They don't understand and think we are off our rockers. You will love this forum and all the wonderful people here. Thanks for joining us.

Oh that is great that you have a wonderful PM doctor. Mine was amazing as well and they are so hard to find these days. I saw the other post about the anxiety and yep that's something that many of us suffer from as well. Now if we just had a magic wand to make everything better...well that's only in faery tales lol. Good luck with everything.

Hi! Thank you so much for the warm welcome. I really look forward to getting to know everybody.

Though I am a newbie to fibromyalgia I am no stranger to RSD and am so happy to help anybody else going through pain or that may have questions. I am sure this is going to be a great experience. For once I don't feel so alone!

-Eliza

Eliza, welcome to HW its very nice to meet you. I also have RSD, Fibro, chronic pain, blah, blah, blah......... What a horrible combination. I am very new to the SCS as my permanent was implanted this past July.

I just wanted to tell you how great HW is and how awesome the members are. Everyone takes you in just like they have know you forever, its a very supportive extended family. The chat area is also a nice place to hang out, it gets busy in the evenings, weekends are a bit slower.

Again, very nice to meet you!

Hugs,
Shell

Lol, what came first? Had symptoms of fibro for a long time but dx'd more as chronic fatigue. Got the arachnoiditis dx then had my first lumbar fusion about 6 years ago. Did great for a few months then started with the RSD burning from the waist down. That has gradually gotten worse over the last few years. The "official" dx of fibro has been in the last few years. They found the cyst in my spine in the last 2 years. Multiple surgeries later I am not sure what to think. The drs have assured me that all of my symptoms are pretty much interchangeable and thats why we went with the SCS. So far I am happy with it.

Do you know where/how your RSD started?

Eliza, nice to meet you, sorry it had to be like this.

One bit of advice when you are dealing with different pain in different areas of your body is to put it in writing. And use a pain scale of 0= (no pain) to 10= (Dear Lord make this stop and I'll be in church every morning, I swear) or something like that.

Do a pain inventory, and be honest, and be sure to list things that happen even occasionally. Start with your head, and the different regions of it (back, temples, ears, face, mouth) and work your way down to your left and right toes. Now the doctor knows what he/she is working with, or if they need to refer you - say to a neurologist, pulmonologist, or an orthopedist). Ask it to be added to your medical records as well.

Right now, you are far ahead of the game. You have two actual diagnoses. For a lot of us, our diagnosis is a symptom, like "pain" or the dreaded "low back pain" which can be so many things. And those nebulous diagnoses seem to make us look like drug seekers. Which I guess we are, to a point. We want it to stop hurting. If a pill does it, fine. We'll take it, but find out what's wrong in the meantime.

Ahem. Sorry. Back on track. We've got people from all over who are just trying to get through, who will have lots of advice to offer, even if it's not directly related to what you have, and they are darn nice people too. Welcome aboard.