What's happening to me?
 

So I made a post about this before. But everything just keeps getting worse.
My CRPS started originally in my right leg and usually stayed there for most of the time. But last year it started in both legs and this year it is taking over my entire body. Its entirely my left and right legs. My back is hurting so much along with my neck, arms, hands, and right under my collar bones.
I'm getting intense migraines from the pain(but I have suffered with chronic migraines since a baby). On top of all this, its causing so much depression. I can't even take a bath with out horrible pain. The pain ranges from intense burning, to intense coldness. Also stabbing pains, weakness, vibrations, any type of touch, even if it is a little bit of a touch. I'm suppose to be getting those shots in my back (forgive me for not knowing the name of it) but my doctor is honestly not great and thinks I'm just over exaggerating. I just don't know what to do. What is happening?

Hey Jenna. I'm sorry to hear about your spreading pain, depression, and a Dr. that doesn't get it. My CRPS/RSD began in my left wrist. I now have it Full Body including my head, and well....all of my internal organs. I believe had I found a Dr. that listened a long time ago, this spread could have been stopped. I actually just found a Dr. a month ago that is really wonderful and he confirmed my suspicion that there were things several doctors before could have tried. Who knows. My point is don't give up on finding a Dr. that understands this disease completely or at least listens to you. I live in a small area and after nearly 4 years of a constant search I have finally found an amazing Dr, and I cannot even begin to tell you the contrast. Personally many times I just settled, and wanted a break from my constant quest for a knowledgeable Dr. It gets exhausting, but keep looking, don't give up. They are out there. My pain is not under control yet, but the few experiences that I've had with this Dr. already makes me feel confident that I've found a great care team. Good luck. Don't give up on finding a Dr. that understands you!

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Honestly. I think a lot of the "not believing" that I'm in so much paid. Is because I'm 18 they are always saying "she a kid she's faking" and that I'm doing it for attention honestandi hoping to find someone at the Cleveland clinic because that's where my first doctor was as a child for this but its just so hard

Hi Jenna,

I am sorry to hear of your worsening pain. Getting someone on board who believes you and wants to help you is imperative. If you can get to Cleveland Clinic it might be worth it. Dr. Michael Stanton-Hicks is there. He is a highly respected CRPS specialist and researcher. Their pain department will be familiar with CRPS, with spread, with all manner of presentations.

Frankly, I would not waste any more time with a practitioner who isn't believing what you tell them. I don't know how you could possibly be cared for properly under those conditions. What if they do injections for you and you have complications? What will they believe then?

Your age is irrelevant, but it is often helpful to go to appointments with support. If you have a parent or other older relative in town, take them with you. You won't feel so alone and doctor behavior may alter slightly.

If you can't get to CC soon, then call around and find other docs who treat this and can get you in. The less time you have such pain intensity the better. You may have to doctor shop a bit. Sad but true. I landed with the 3rd pain specialist because I just wasn't impressed or comfortable with the first two. Your confidence in your doc is important.

Please let us know what happens. I am praying you find help and relief soon.
Sending hugs and healing love, :hug:

Luckily I live really close to the Cleveland clinic and I will DEFINITLY be calling about that doctor. Because I am currently with some one in pain management from there who just doesn't listen. So I'll talk to getting in with that doctor. Even my original CRPS doctor that was pediatric was amazing and he was with CC too so I'll probably get in with that doctor because all my history is there.

Thanks so much for the sugestion!!!

Dr Stanon-Hicks is no longer seeing patients but there are other doctors in the pain management clinic, I saw Dr Bruce Vrooman at the clinic and he was wonderful. He is the only doctor that does the ketamine infusions but there is at least a 2 year wait list. However he did offer several suggestions that I can try. I chose not to have my lumbar sympathetic blocks done there because I live about 2.5 hours away. Overall though I had a great experience. When you are making your appointment if you want to see Dr Vrooman you need to tell them you want to see him specifically. Good luck!

Thank so much!