Rsd/crps
 

HI, I'm Brandy, I'm 28 and I have had RSD since I was 14. I am a single Mom (father not in pic at all), my son is 10 and in the last couple years he has had to grow up real quick. My disease went into remission some years ago, it came back full force in 2012. It started in my right leg and now has moved up my hips and into my left leg now. I have to use assistance when walking now. My son is not ashamed to carry my camo pink purse for me :) Anyways, I was supposed to start Ketamine treatments last month, than last week, than next week, now I got a call today postponing it once again until September. I have had to wing off my pain meds for this treatment, does anyone know what I can do to relieve some pain?? Any suggestions would help, I have tried everything I can think of and still no relief.

Thanks, and I look forward to getting to know people who suffer with the same thing. I know it's not a good thing but it did make me feel better when I saw this and realized I am not the only one who suffers from RSD.

I'm sorry you're getting stuck in this position. It seems that for all we have insurance to help us, sometimes all it does is leave us wondering why we have it. :mad:

I do a few things for pain relief that aren't drugs. I use microwavable heating pads, I can't stand the electric ones because they're uncomfortable to use. I also use essential oils. For me ylang-ylang and frankincense are helpful, I'm not sure what others will like and find helps. The third thing I use (this is not G rated, sorry) is orgasm. It sometimes takes an iron will to block the pain out of my mind enough, but the pain relief is great. And free!

I hope they see you soon so you can get relief. :hug:

Hi Brandy - I'm sorry you're in so much pain. Cool kid you got there:cool:

I don't know how to help much on the meds side, since individuals have such different tolerances and reactions. Many here have had success with lots of different modalities and will be able to chime in. A warm bath with epsom salt and soothing music was always good for me though.

For me, the biggest pain relief came from visualization methods and meditation. Here's how I started: http://neurotalk.psychcentral.com/thread202210.html

Doesn't seem like much but it helped me:)

Hahaha Adalaide that's genius and you're frickin' dead on:)

There is a massive parasympathetic rebound after orgasm that provides long term, natural pain relief.

Pretty much all parasympathetic activities are great for managing and reducing RSD symptoms!! And Addy's recommendation is the most fun;)

Welcome bchristman. :Wave-Hello:

Welcome Brandy! Glad you found us! This is a great bunch of CRPSy friends here who offer hugs and share info.
Wow. CRPS at age 14, I am so sorry this happened to you so young. Were you injured? Or have surgery that caused it? Mine is in the right leg after multiple spine surgeries. For comfort I use warm baths with epsom salt, heating pad, soft socks, meditation musice, lavendar oil aromatherapy, aquatic therapy in a warm water pool,elevate my leg, and get cyber hugs from my NT friends!! Wishing you wellness - Lottie

Sorry you rsd came back so strong , hope soon you find a way to regain control back.
I'm so happy your son is such amazing young men,sure you are so proud mama.
My relief when flare ups are ,heating pads In the most affected areas,rest when possible,take my meds, cry if I have to ,gelato to refresh my belly , light and soft music Tibetan singing bowls to meditate and relax a little, but most important , always try to no fight a bad day,let it pass the only really good advise from my old pm dr.when you fight a bad day the pain gets back at you stronger then ever, sucks for sure.
I hope soon you found some much needed relief and also pamper yourself with something you like and distracted your mind from the pain,is almost impossible but do your best,
Happy you are here and we can in some way give you some source of support and comfort,wish you better days and sending you gentle hugs with love Jesika .:grouphug: