I started this thread mainly to ask Vic about the cyanosis, and have not seen him respond yet. Vic, I hope I did not upset you with my grapeseed observations?
I am also hoping that you all realize I am not trying to say ANY of you that cannot work should be. Or that I am trying to be one up on you. It is just how it worked out for each of us with this disease. It does affect everyone differently. If just a couple things changed in my life - I would not be able to continue like I have been. It's a delicate balance.
One thing in my favor is that I have very little of the traditional sensitivity. So I can wear clothing and be around wind, fans etc. That alone makes a huge difference. I do have sensitivity - but it takes a little different form. For me, showers are painful. Massage is painful, but it keeps me together and healing... and the worst is unknown touch... like someone coming up behind me and patting me on the back when I don't know it's coming. You might as well figure I will be in increased pain for 2 days in that area after that. I can only wear certain types of fabrics for socks on my RSD foot - nothing harsh or itcy - soft and fluffy is best. My point is though... that if I had a problem wearing most clothes - it would make it a lot more difficult.
When I first had it in my foot - I was on crutches for almost a year, in a walking boot for a couple years, an AFO for a couple years. It was a lot harder to deal with then than now, when it's mainly in my upper body, and I am pretty much mobile. BUT - if it comes back with a vengence in my foot, to the point of needing crutches.. these shoulders will not be able to do that. I don't know if my employer is willing to go so far as having me at work in a scooter. Or what would happen if I could not drive.
I worry a lot about these things.
And, about the pain meds.... maybe if I had success with any of the ones I had tried (none relieved my pain to any real degree), I would be more open to trying stronger ones, or bigger doses. But I have not had any luck with the pain in my foot or this time in my shoulder with neurontin, lyrica, cymbalta (or probably 15 other anti-depressants), maybe 5 different muscle relaxers, a LOT of anti-inflammatories, oxycontin, percocet, darvocet, vicoden, ultram, duragesic, changing high blood pressure medications, steroids, botox, SGB blocks, tens therapy, Physical therapy at 3 places, choirpractic (sp?).... and I am sure I am leaving a lot out.
I am glad for those of you who can take the meds and have them help.
The only things that have helped me are topomax, calcitonin, baclofen... and now the norvasc is helping more than the clonadine. Prednisone will help if I am really really bad but I try hard not to take it. The botox helped, but I had a reaction to it, and he won't do it again. I did go to a great Occupational therapist at the Cleveland Clinic who taught me how to do therapy with RSD in general (don't make it mad!) and her program has helped. I also take some supplements that I think have helped.
I use lidoderm patches on my worst areas on my work days because they last the whole time I am gone. I use ketamine/lidocaine compounded cream the other times.
I do some of the meditation, I do about an hour and 15 minutes total day of stretching my arm and foot. I go to massage therapy as needed.... this has been the thing I believe that's helped me most. I've been told it may be the single reason I don't have the skin sensitivity in the way most RSDer's do. At first I was going 3 x a week, now I go every other week. I try to use my bad arm and foot as normally as possible. I open doors with that arm, etc to try to get extra exercise for it.
I do take ultram sometimes, but it helps my myofacial pain I had before the RSD, not the RSD very much if at all. Aleve helps my overall pain a lot, but if I take it at prescription strength or every day, I swell up like a balloon with retained fluid. So I try to keep it for when bad weather is rolling in (my worst time is when barometer is rapidly dropping) I have vicoden and vicuprofen I can take, but it really doesn't do much, so I seldom take it.
Two other things play into my being able to work that others are not blessed with -- a great employer where I have somewhat flexible hours, and since I work 2nd shift, if I need to stay in bed longer that day, or take a really long soak before I go in, it's no problem. There are not a lot of people who have the experience and qualifications I do, and my employer would like to keep me... so they are pretty tolerant of the nights I have to have a heat pack on, or have tears etc... they have another person who had to go on perm. leave because of MS and they treat him great. So.. I am not **to** worried about my treatment here.
The other is my elderly Mom lives with me now. She moved in 14 years ago then had both her knees replaced. She's 84, but you would think 55. She's a dynamo. She does about 3/4 the housekeeping, the laundry, mows the grass, does the grocery shopping. It's not always easy to live with your mother...
... but right now, I sure don't know what I would do without her. It's only the two of us though.. I don't have any other family for 150 miles. And very few friends - most have passed away unfortunately. Mom has outlived all her friends.
So, I have it really easy compared to a lot of you. It makes me feel really guilty a lot of the time when I read your posts -- I realize just how easy I do have it.
PLEASE do not think I sit here in judgement or on some high and mighty chair thinking "I am working and you are not".... no... it's just how it happened to fall this time. I could trip and fall down some steps next week and get it all down in my legs and be unable to work and everything could change in an insant. I know it too. I'm very scared of that day. I have been incredibly lucky to have this twice now and be able to stay working (the first time I was off for 2 months while my broken foot healed, but this time with my shoulder, I have not missed any time at all) and to actually improve given enough time (nearly 5 years for my foot last time).
All the best to all of you
Jules