Kelly,
I will reply more later, but one thing I wanted to mention is that 10 years ago, the Ortho said that my back was "fused" from spasm from my mid back to my bottom. I could not bend or twist or move at all......but it was from spasm. It took a LONG time working with it and doing PT and exercises at home now but I now have a "normal" spine with movement (I even had a baby 5 years ago!!).

You are so disabled, you may be eligible for a PT to come to your house and work with you??? Do you have SSI or SSD??? I am way out of my realm of understanding of how all of this works, I just want to get you HELP. My friend is a hospice nurse in Georgia and she visits homebound people in their homes. If there is any way you could get PT, I think that could help you in conjunction with good muscle relaxants and proper pain control. I honestly believe there is hope to get your mobility back and ANYTHING would be an improvement and give you a better quality of life.

I'll PM you in a while!! Thinking of you and wishing you a good day today!! Hugs!!

thank you mominpain

I did have PT in my home that is when they said, there was not much they could do for me, (I am so sick of hearing that)
yes I am on SSD and SSI, but again its auto medicare will not cover me,
I just got pass medicare with some of it, one of my Dr's going way beyond helping me, and has got somethings pass medicare, but no all,
we/ she keeps trying to do somethings for me in hopes that they will cover me
but there is not much anyone can do for that part, even one of my own Dr's PM
Dr, keeps telling me in the 20+ years, he has been doing this, he has never seen the Ins Co, go as far as they did with me, and it is there fault no one would treat me, they kept fighting to pay anything, I had to even pay out of pocket to have my tooth pulled, they would not cover it, even thou my TMJ and my tooth broke when I was hit, and it took them 10 days to send someone to see my truck, when I called , they said with in 24 hrs
so they left me out in a diff St, with out no help, I called and ask for help they just said we are still investigating it, !!
wow and the car crash was not one bit my fault
and I never had a ticket, never miss a payment, or was I late, and I kept up full coverage, I am 44, A+ driving record,

thank you mominpain
Kelly

Hi Kelly,

Thank you SO much for your kind words ... I really appreciate them and am so glad that I could at least try and help you even if it was just in a small way!

I'm so sorry to hear that your back and spine is so badly damaged and I really hope you can get it sorted real soon! I have spinal issues also although they have never been diagnosed - my PT's say that I am extremely bent over and I can't sit up at all. If I try and sit up, I just go into a slouching position straight away and it really hurts me! When I was on the Intense Physical Therapy Program at Great Ormond Street Hospital, London, a girl there had really bad Scolosis and she had a LOT of the same symptoms as me!! I did mention it to my PT's and they didn't really say anything and didn't seem that interested but still to this day, I wondered if there could be an underlying problem other than the RSD and the long list of other health conditions that I have!!!!

I really hope you can find a Physical Therapist that can help you and that will go easy on you! I would definitely look into the weight exercises that I told you about and see if they work for you or not - I have the website to where you can get some weights if you would like me to send them to you!!! Over here in the UK, we can only get PT's IF we go to the hospital and it's so stressful and painful trying to get ready and then travel there and back!! I wish you could find one that could come to your home as I am sure it would help you quite a bit - even if it is just in a small way, it is so much better than nothing!!

I'm thinking about you and if you need any help, you know where I am!

oh Ali,
every time I hear more about you it brakes my heart,
but how you handle it is awesome,

I am also bent over like that, no one knows why, besides the pain, it would take me over, then I could not bring my self back up, or sit up right just like you explained, even in PT when I was going in for it, I could not get off the table after PT, the pain was so bad, I just would try and roll off, and then I would have to bend over the table for a bit to try to stand and walk out of there,
and it kept getting worse and worse, then my PT finely, said no more
it was a very bad burning pain, like I felt like my spine was just going to snap in to 2,
I was not getting any better but worse, then I was sent to a nero surgeon and was told I needed surgery, then my Ins co said no,
but what you are talking about being bent over, wow,
I do not know how you do it, but what ever it is don't stop its working for you
look at every thing you do, and still try and offer help,


hugs to you again
peace
Kelly

PS yes I did get PT and OT in home for a little bit ,,but again there was not much they could do for me
oh and to get that pass medicare, my Dr did not write about having RSD
so when they came in, they where stock to see me,
we did get that cleared up, there was no way was I going to let someone
work on me like that with out letting them know what I have,
I know my Dr GP was just trying to help, but not at my health

Kelly,
Forgive me.....I cannot remember (darn RSD)......are you on a muscle relaxant??? Did you start taking the Klonopin??? Have you noticed any difference since you did?? There are so many different meds that could help you......I just do not understand why they haven't tried you on them??? If you could at least get a prescription written, other people on the forum have posted suggestions in a different thread about contacting the drug companies directly. Hugs....

hello mominpain

yes I did start them, not sure if there is a diff yet, I am only taking one a night for a week and then 2 next week and then up to 3 a day
I am on Zanx, so they want to ween me off of that, also,

I am also on Balafax ugg can not spell it, I take 4 a day, 40 mg,

how are you doing today?

thank you
Kelly

I'm doing better than I was last night......I can move my ankle again.....my whole foot hurts and I think has tiny muscle spasms in it because I have tender spots in it. I'm going to try to cook dinner early tonight before the pain gets too bad (which it always does later in the day).

Are you on Baclofen for your muscle relaxant??? I've heard from many on this forum that is what works for them. I may look into getting that for myself. I think the Klonopin will help you once you get up on the higher dose. It is good for several different issues related to RSD. Talk later!!