Originally Posted by Neurochic
Loretta has just summed up what I was trying to say about how much you may need to put in to get a fairly small functional improvement which can make a massive difference to your quality of life.
I had endless physio for years both before and after my diagnosis and whilst I made only minuscule functional improvements, I am certain that in the long term this has had a real benefit. I have fewer sensitivity issues, I have more mobility than i would have had in my originally affected foot and ankle, I have probably got more mobility than I would otherwise have in my other limbs (all are affected) and I am sure my dystonia which affects my whole body from my toes to my neck and face is less severe because it could be much more fixed than it is. It also helps you feel better about yourself because its one of the few things you can actively do to help yourself. Swallowing pills isn't very satisfying!!
Neurochic, thank you- I so agree with you. I know without a shadow of a doubt, the physio got almost all my shoulder/arm range of motion back. I didn't know I had RSD for 5 years. Even when it moved to opposite shoulder and more PT, it was worth it. I also know when it moved to my hand and it was frozen like a board and couldn't use it or even touch it, it was worth all the pain and trips for PT. Even though that hand didn't get full range of motion back and is frozen like a claw, I can type and have a little strength in it and can curl it to 4 o'clock position (left hand) I had significant delay in treatment-Rheumi doc here in AZ said I had RA. I knew that wasn't right, so traveled to Oregon to Ortho Sports Injury Group. The hand Doc saw it and said I think RSD. sent me for tests and next day was in PT. He gave me a stack of print outs on RSD and I didn't have a clue. Had a good neuro and ortho hand doc here in AZ and his PT people had experience in rsd and pt.
One thing they had me do at home 7 days a week, was get plastic bowls and put different textures in them, like cotton balls, sugar, rice, and put hands in them. I no longer have any sensitivity of touch to hands, feet.
I know without a doubt, the work was worth it, and when my toes starting curling, I did the same thing, daily till they touched the floor again, including swimming 3-5 times a week in warm swimming pool.
And I totally agree with you on the MEDS. They did get me thru some tough times, but I went off them. First, the neurotin- I was on 3200 mg. I had terrible daily electric shocks- bolting thru my body and brain-would have leg and feet spasms, arm and hand spasms. I don't know if the high neurotin stopped them. But, I went off neurotin and cymbalta. I had been on as high as 6 vicodin a day and 4 lorazepam a day and over a year and half ago, I decided to go off them 1 pill a month reduction. So, it's been a year without them. I do take meds to regulate blood pressure and heart rate. I do get syncope on rare occasion.
And take mirtazapine, an anti-depressant. I have to say if the eyes keep burning and the TN keeps acting up, I would take some pain meds on bad occasions. The feet are a daily deep burn, but I'm in no where near as bad a shape as I was tween 96 and 2010.
So, like yourself, I feel sooooo it's worth every possible effort. And I, like yourself, feel a large part was the PT and the 'at home' work helped with the 'outcome' of the 'present body' But going thru the PT is really really really hard- no getting around that memory.
Like someone else said, I also am glad you stopped holding back in posting and enjoy your posts and very apparent experience, knowledge,, or some kind of background that is respected. loretta