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Originally Posted by momzpeachy
Thank you so much for all of your replies and prayers. I finally got on the computer today and feel like typing. I've had a rough week and havent felt like doing anything. Talking to anyone has been difficult. I had a breakdown the other day and just shut down. Wednesday was awful. I spent pretty much the entire day crying. My Doctor's office called me (not the Doc of course) and she told me "no more ketamine". I can no longer have the ketamine boosters and I was removed from the inpatient list. I was really upset because I was just weeks away from doing the 5 day inpatient. I was hoping that would work. I did have a reaction to the ketamine. I am feeling better now and I can swallow once again. It did feel like an allergic type reaction. It also seemed like the RSD got worse which she said can happen. It was an adverse reaction and it just doesn't seem to work for me. Nothing does! I'm allergic to EVERYTHING and that's not a joke...I mean everything! I can't take most meds out there and when I did the allergy testing it showed that I am allergic to everything. They couldn't believe it. Morpheine is the only thing I can take and I was on it for almost 3 years and found that it can progress the RSD. I was taken off of it.
Currently I'm taking 2400 mg neurontin daily, 60mg cymbalta, and something for headaches that I can't remember the name off hand. Not much really. That's it. I'm in lots of pain and feel like crap. Today was a little better. The weather got a bit warmer so it helped. I'm just really really having a tough time. My face is so swollen and red. Actually my whole upper body is. Now my skin has also changed alot and is so shiny and pulling tight. It looks horrible. My skin always feels sweaty and gross. I wouldn't wish this on anyone.
Can anyone help me with what can I do to feel better? Any techniques. I want to stretch but it's hard. I so badly want to exercise but can't. 5 minutes of exercise puts me into a bad flare. I have gained so much weight. I'm flat out miserable and now I don't know where to go with this. I don't want to live the rest of my life this way but I don't have a choice. Some days I do wish I'd go to bed and not wake up or when I do wake up..all this would just be GONE! wishful thinking.
Take care everyone..I will hopefully keep posting..I need to vent and all of your support will help...thank you 
I will try and respond to those who pm'd. I can only sit here for little bits at a time. If you want to talk by phone..please send a phone number. I can call you. Thanks again! |
Hi Momzpeachy, My heart goes out to you. I know how it feels to be full body or generalized. I hate the sweating entire body-the redness, and skin blemishes or break outs. I have a room in our house, where I hide out, and pretty much like to be alone. I've had RSD 15 years ago-diagnosed 11 years ago. My husband is very supportive, although not at the beginning when none of us knew what was going on. It was 4 years before a diagnosis. Our daughter is 30-married 9 years. They moved to Chicago from Arizona 2 years ago and have been back for a year. They are staying with us for a few more months. He flys for one of the airlines and our daughter has worked for the same court reporting firm for 10 years. I'm grateful for everyones support, now that we all know what is going on.
Have you checked out HBOT? I'm going to try it, as soon as I save the $$.
I had very good success with physical therapy and massage therapy. Got full range of both shoulders back. It was very painful, but I'm so glad I stayed with it. Also, one of the biggest helps for me was swimming, and water exercises in the pool-86 degrees. It was kept my toes from curling up. There are gym clubs and Y that have pools for very little $$.
I hate the weight gain too. I had always been thin and very athletic. My daughter and I played tennis-5 days a week, water skiied, snow skiied, horse back riding. aerobics, dance classes. 10 K runs. I had a wonderful psychiatrist that helped me thru the losses.Also miss traveling a lot. But, I think it's like the earthquake, some lose their legs, but are happy to be alive and find other things to be grateful for. That helps in healing. I have several 'tools' that help during 'low' times. I Cry, too, but some of my tools are
music, scented candles, meditation, visualization, journaling,j comedy, sports games, sending cards to friends, keeping in touch with you dear friends, reading, e-mailing, stetching, massage, light exercising, do my nails, I'm on a high antioxidant diet, healthy chocolate. The cocoa bean is the #1 highest antioxidant in the world-the one I eat has a patented cold pressed method formula, thus not loosing nutritional value thru the cooking process like other chocolates. It also has the #2 highest antioxidant Acai Berry from the Amazon Forest. I know I won't be at peace with myself, till I loose that weight I gained from Neurotin and Lyrica. I really feel, I'll be able to cut down at least one of my high blood pressure meds, with weight loss.
So I'm working on healthy eating, exercise, and running a small business from my bed, healthy chocolate.
I wrote you last week by private message. I gave you a website with a lot of good information. Please don't loose hope, I know it's awful to deal with, but we aren't alone.
Last week, when I saw my RSD Dr., he told me about a RSD patient. There was a car accident here in Phoenix. Two cars collided on the freeway and hit a metal fence. One of the poles became a air missle and went thru the windshield of this ladies car. It took off her little finger and part of her arm and impaled her shoulder to the back of the seat. She had 18 surgeries. Her neurologist asked my neurologist if he would take her has his patient and do the HBOT series on her. She had frozen shoulder and couldn't raise her shoulder. After 9 treatments she was waiving to the TV crew. The tv crew came out and interviewed her and my Dr. I went thru 100 pt treatments to be able to get full use of my shoulder when it became frozen after breast surgery. plus 100 massagae therapy treatments.
The VA Hospital in Florida just put in 16 brand new HBOT for treatment of the wounded etc.
Take care of yourself, loretta with soft hugs
