Rsd/crps
 

Hello. I had sun poisoning June 1. A week after the sun poisoning, I had electrifying pain and muscle spasms in my right shoulder blade and down right arm and wrist. Diagnosed with internal shingles brought on by weakened immune system from stress and sun poisoning. Pain never went away, and swelling began in painful shingles areas as well as lymph nodes on right side. Two doctors diagnosed with me with RSD/CRPS. Having a difficult time. Meds and PT have not helped and doctors don't want to deal with me. It's been 6 months and I can't imagine going through life feeling like this. As I'm sure everyone on here knows, it's difficult when friends, family, and coworkers don't understand what they can't see. Hoping the new year brings relief and understanding.

Welcome
 

Welcome Lola39! I am so sorry this has happened to you. I have not heard of internal shingles. Do you think that is actually what you had? OR do you think you were misdiagnosed? My understanding is that post-herpetic pain related to shingles can be very painful and last for months. Look for a good pain management doctor (they are usually anesthesiologists) who can help you with the pain. Feel better. :hug: Lottie

Hi Lola :) and welcome, although obviously I'm so sorry you have to be here at all, sounds like you have been through a really tough time recently with all that going on... I hope you feel at least a little better very soon. Don't give up on finding a doctor who can understand at keats part of what is going on in your body, and help you more with the pain. As a patient, you have the right to proper treatment, including adequate pain relief.

Have a good read through some of the threads here, and be kind to yourself at the moment. Stress is really bad for your system, and when you're in constant pain you are inevitably stressed beyond belief. Take some time regularly to try to find some calm moments - meditation has worked very well for me, and I was a determined sceptic to start with! You can download tracks on iTunes, or look online or YouTube. I use the Mindfulness ones, particularly the Body Scan. Even just deep breathing exercises help to stem panic and pain a little...

There are some things to try, including regular vitamin C which helps to prevent spread, and staying away from ice and other temperature extremes. Unperfumed Epsom salts in a warm bath can bring some relief too, especially if you do it regularly. Keep moving gently when you can, and never give up hope. We do understand how scary this can be at times, but you will find a way through.

Bram.

Hi, glad you found us. I hope you find some relief. Unfortunately not all doctors know how to deal with this type of pain. You really have to shop around for doctors. Some go to pain doctors like me because pain is the only symptom I have but some go to neurologists. It all depends.

I can't imagine internal shingles. Sorry you had that. I've had external ones and it was a horrible experience. I hope you feel better....soon!

Heather

Hey Lottie, I have RSD following carpel tunnel surgery but my sister inlaw had shingles in her ear and was mis diagnosed at first. Her pain was nearly unbearable. It has moved and she was so weak that I really didn't think she would still be here. She could not eat ect. She is going to PT now and is so much better. She was put on lyrica which has helped a lot. With it moving to other areas makes me think she may also have RSD. I hope they find a cure soon. There are so many wonderful people on here. Hope for remission for all of us.