Hi Firegirl, My heart goes out to you. High pain like that is so difficult emotionally, mentally to deal with. The more you can move around, out of the wheelchair, the better, even for a couple minutes. How long have you RSD? I've had it 15 years and now full body and internally, entire pelvic/spine region. A flare is so miserable.
We are in the process of moving and the activity has actually lessened my pain. I overdid yesterday and ended up with a cane last night-so there is a balance. But, for me, activity, even a little bit, and a healthy diedt high in anti-oxidants plays a part in lowering my pain. Water therapy has layed a huge part in keeping me mobile. Remember the temp needs to be 86 according to RSDSA.
Do you belong to a support group? If you go to RSDSA and put in your zip code, they will give you closest support group with leader phone number.
Did HBOT help any? How many dives did you do? My Dr. just built two clinics in Arizona with HBOT and I'm going to try it.
Do you practice meditation, visualization, biofeedback, music, massage, -massage really helped me-I also did desensitizaton from the very beginning along with physical therapy.aromotherap, any form of distraction. even painting by numbers. I'm going to buy a digital camera and start a new hobby of pictures, sending to friends, Add to my albums.
Before RSD, I had lost my parents-was 25 when my mother passed from cancer, Then Dad 7 years later from heart issues. I went into therapy -2 plus years weekly. It helped me more than I can say. Then when got RSD, it helped me. But when I was diagnosed full body and neuro suggested seeing a psych-I found one who I have been seeing 6 years once a month.. He is also is a neuro and pharmacologist. Can't tell you how much he has helped me, getting me on the right meds and right amount. I actually have gone down or gone completely off some meds.
Being on this support group has helped beyond what words can tell. The love, compassion, support is amazing. I had withdrawn and isolated, which was not good at all. Now I feel being able to share and support different ones has brought me joy.
I still have my days of crying, breaking down in the 'closet'-The internal pain is rough. I've passed out for an hour and half, then woke up and got my husbands attention. Paramedic said I was dead. Passed out again and way to hospital. Several days in semi icu. Caused by low blood pressure. I've been where I didn't want to live, but would never consider suicide.
This is a dreadful disorder, worse than anyone should have to endure.
What state do you live in? Thankfully we live in Arizona, although the summers are pretty dreadful, especially with the internal 'fire' My gyn is trying to put together a compounding cream with the compounding pharmacy.
What heart signs do you have? I had irregular ekg and went thru tests with cardiologist. Do you have sleep apnea signs- I do. Have applied for SSDI. I lost my health insurance a few months ago when we sold our business. I can't work anymore, thus the need to move to smaller house. Am so grateful we can pack slowly. Our house sold just about the same day as we finished remodeling the smaller house. Still have over a month before this house closes. The movers will move heavy furniture. My husband has had a couple back surgeries and sheduled for surgery on his hand-am going to get him to delay it a couple weeks till we are completely settled. I worry about RSD for him. I think this is the 5th surgery on same hand. It started with broken wrist while I was teaching him to play tennis right after we moved her from Oregon.
Please stay with us, develop closeness with different ones. We really care about you! We also have a combined education that is awesome. Are you sleeping at night? My Dr. was doing a 200 person study on seroquel and it's affect on fibromyalgia and found it helped people sleep. I wasn't sleeping all night till 6-7 am . After the study (which he put me in) started sleeping 10 hours. Can't tell you how much that helped my pain and general condition.
Also have been helped with lorazepam for anxiety, but I see you are on xanax. Please, firegirl, stay with us -we are here for you.One of your new friends, with big and soft hugs, loretta