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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hey Deb,
It was early in my diagnosis that I started my dives my pain was then what I thought was a 5-7 but would now call a 3 - but the longer you live with this the more pain you get used to living with - or that's how it has gotten with me as my pain has gotten worse. The pain did improve with the dives - mostly what they did for me was my insomnia went away and I could sleep - as we all know when we sleep is when we heal - I also didn't have anywhere near as much swelling in my foot and leg and my temperature was much closer to normal rather than my foot being so cold all of the time. I know that it helped me. I guess I was very blessed that work comp paid for it but they had done it for another person at the hospital with RSD so to have refused me would have been grounds for a nasty lawsuit so I think that's why it was approved. I'm asking to start again and they haven't said yes yet - and the other person has been doing it straight for 2 years so now we are going to see what the "real situation" is going to be like - but they (work comp) have been being very unfriendly with me recently - so that good relationship that I used to have has finally gone away - not with the adjuster that I was working with but with the bean counters up the chain as they realized how much my treatments are going to cost over my lifetime as I am not improving. As for where my pain is now - on my best days I'm at a 7 and that's with some major medications and the use of a wheelchair when I'm out in public. At home I still try to use my leg as much as I can because as we all know if I stop using it I'll never get use of it back. I'm terrified of where my life is going now and it is difficult to stay positive. I'm dealing with horrible depression and of course since work comp is playing nasty they aren't paying for me to see a therapist - money is very tight but we're coming up with it or I don't know what would happen. This disease is horrible - I have wonderful friends and family but feel so worthless that it is so hard to find reasons to feel positive or happy about anything. I know that the "old" me is dead but it is becoming more and more difficult to define who the new me is going to be due to the lack of support and the way that the work comp system is continuing to promise help and then literally the next day take it away - it is tearing down any sense of hope that I had. I'm so sorry to dump this on you - it's not what you were asking. I will say that oxygen is a healer - a mask only will get your saturation up to what a healthy person would have at room air anyway. The reason that the HBOT works is that it supersaturates you and forces the oxygen into your tissues so that it gets down to those nerves where your vascular system is not working well (thus the swelling, coldness, sweating...) you know the symptoms - the nerves are making the system not be able to heal itself - oxygen helps the healing process. I know it is expensive - I also know that my work comp paid about 1/2 of what most people pay - so you can negotiate a rate for yourself if you promise to go for a set number of sessions - like 40. I hope that this information helps - and if I didn't answer all of your questions feel free to ask more - I'll answer them to the best of my ability. Big wishes for a pain free day and I hope that the start of school isn't too rough on you - I know it is hard but I know that you have a lot of good motivation and help in your family to keep doing it - they love you and they need you - and you have your kids at school too... those smiling faces have to help some too - focus on the good thoughts when you can and hopefully it can help some of the pain go away. Best wishes to you in whatever decision you make.





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