Quote:
Originally Posted by StillTrying
Hi...I was diagnosed with RSD back in 2007 after a head on collision I was in. I shattered my right arm. After the surgery I was diagnosed with the rsd in my right wrist.
Well to make a really long story short, I have tried everything possible from neurontin to lyrica and every possible pain narcotic there is.
I am now trying a ketamine cream which I cant seem to put on myself due to the pain. I have no abnormalities to my skin other than the occasional motteling and some swelling in the right hand. I also have undergone over 12 stellate ganglion nerve blocks and I also have an internal spinal stimulator.
The stimulator worked the first 4 months than ended up agitating the rsd. The incision in my neck from the surgery now has rsd as well.
The RSD is now in my neck, my entire right arm, my lower right hip (where the incision is for the battery for the scs) and its also in my right knee. The worst of the RSD though is in my entire right arm. I have to put my arm in silk pajamas just to rest it down. Goosebumps sends me in tears.
Everything seems to have not touched it or made it extremely worse.
I am now at my wits end. My husband feels helpless and my family feels helpless...what do I do?
There is no specialist here and all I hear about are the low dose ketamine infusuions have been known to put the rsd into remission.
Any ideas?
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Dear Still Trying, We welcome you to NT and hope we can be of support and comfort. There are so many kind and compassionate people here for you. I am so very sorry about your accident.
Mine came following surgery. That was 15 years ago and now full body and internal organs.
Like was mentioned, RSDSA is a wonderful support site. Their annual meeting last year was here in Scottsdale, AZ Patients attended Saturday and Sunday was for Drs. and therapists.
One of my favorite educational sites is rsdrx.com go to puzzles list It is a list of 146 questions and Dr. Hooshmands answers. He practiced RSD for 40 years in Florida and now retired, but has an associate. You'll find a lot of good information.
Please do lots of research before any procedure. I wasn't correctly diagnosed for 4 years, but did start physical therapy for frozen shoulder following benign breast surgery. I am completely mobile except one hand is about 50% due to wrong diagnosis and delayed treatment.
For me, physical therapy , massage therapy although very painful has kept me mobile and out of wheelchair. I also have done a lot of pool therapy. Water needs to be 86 degrees. Hot tubs aren't good for some of us. No ice.
My toes started curling up in about year 12 and my Dr. had me in our pool every day and in 3-4 months, they were touching the ground again. I am so grateful. For the last 6 years I've had a good RSD Dr. He is a neurologist, psychiatrist, and pharmacologist. Good combination for what we have. When I went full body or generalized, my neuro suggested psychiatrist, i didn't like his two recommendations or really even him, and found my great Dr. in the yellow pages. I'm smiling.
Do you have a good RSD Dr.? Getting the right combination of meds is important. Many meds work on nerve pain that are not opiods. I'm on 2 high blood pressure meds. 1 sleeping pill 4mg of anti-anxiety med, lorazepam
4 mg of vicodin for pain.and one 120 mg cymbalta for antidepressant.
I used to be on 3200 mg of neurotin for the electric jerks, jolts, but gradually went off and have been off for 2 years without them coming back.
I was able to reduce the anxiety and pain meds with a better sleep pill that gave me 10 hours of restorative sleep. He did a trial study for seroquel. They found it not only helped fibromyalgia, but helped with sleep. I take 150 mg.
The ambien quit working
Epsom Salt Baths help me. Also have a hand/feet waxing machine that feels good on the hands and feet. I meditate, visualize, use biofeedback, journal, use candles, organic essence oils, distraction helps, reading encouraging books, staying in touch with family and friends, the tendency is to withdraw, but that is not really healthy. If friends are negative, we may need to limit how much we are around them. Try to be around positive friends and family. You'll meet many wonderful friends here.
Reach out and we will be here for you. One of your new friends, loretta with big soft hugs
PS: One important thing is to desensitize your hands, limbs. At physical therapy they would put my hand in a glass thing and blow warm sand around. At home I took 5-6 plastic bowls and put cotton balls, rice, beans, sand, sugar, just different textures of fabric and run your hands and feet thru. It's so important-just a little at a time so you can tolerate clothes, being touched, etc.
Take care, loretta