I too have no blue color in either my feet or hands. However, my feet are bright red on the soles especially and burn like crazy. My hands are somewhat pinkish. The RSD Dr. observed that both my hands and feet were the colors that qualified for an RSD diagnosis in those areas. So I guess they don't have to be blue to qualify for RSD diagnosis. Mine were never blue although they were burning like crazy.
Yes, the fibro. responds to nothing - narcotics, anti seizure drugs,etc. I think sometimes the fibro. pain is worse than the RSD. Yes, they are 2 kinds of pain but do overlap. The fibro is such deep aching, RSD is the burning, stabbing. Yet I read where fibro can do that as well. Very confusing to have both as a diagnosis.
Sydney

Heya

I have dramatic cyanosis - my colour changes range from black to bright burning red - but I generally have freezing blue/ purple limbs.... and I have "cold" RSD.

Jules - I find that many of your strategies work for me too. I didn't start getting my life back from RSD (Well, with RSD) until I discovered that I was in pain doing nothing and in pain doing stuff - so tried to get on with my life. It was how I got back to college and decided to go to uni. I KNOW that anything that touches me will HURT so much - BUT - if I am on bedrest then it still hurts an awful lot.

I have taken narcotics from the beginning - I did try to stop taking all tablets for a while - but that wasn't good at all. I find, personally, that I HAVE to take some form of opiod to try and reduce my pain levels.

There does appear to be a bizzare seperation between people who work and people who don't. I have had RSD for 5 years and I am now in university full time. It is HARD, my pain generally has increased and some of the more unpleasant symptoms have got worse. BUT, if I am not able to do something with my time then I end up with WORSE pain because I am not distracting myself. There are days when I can't manage lectures or work.

I guess that with people who have a job/ course they love then they will do everything to keep working - I mean if Artist gave up proper work she would still be doing her art - and it sounds the same for you. Therefore if you were to continue it anyway it makes sense to carry on at work if you can. Eugh, not explaining this well, but I hope you got the gist!

Keep at it Love

Frogga xxxxxxxxxxxxxxx

Dont know how this got to work or no work lol. But, it is a good subject, and one we all need to read about. One thing I have learned is that we all are different in the ways this monster has effected us, and how we are able to deal with it.

I never got to try the grape seed because I am without the money to sustain the dosage, or even begin for that matter

I always wanted to though.

As for work, man that is something that I have fought with my inner self over for about 5 years. And about meds, well I remember that it took my doctor 3 years to get me to at least try them, and I found they work more than I thought when the doc dropped my insurance. So now no meds at all.

For me the losing the ability to work did not come on all at once. Little bit by little bit this monster has taken my life away from me. Just today I was outside talking with a couple of my boys about how I feel life has been passing by as I watch.

Then my son pointed out that when I was working life was still passing me by
He said that the difference is I was never around to experience life, I was always working. So life was passing me by. Now he says at least you get to play with the kids, and sit and talk with us. So it only a perspective, how you see it.

I think it depends on what you worked at, and how your employer would deal with the problem employee. I could never go back to what I was doing, even though it was a cush job. There is no way I am able, and my employers wouldnt put up with me missing days on short notice, or going home early etc.

It doesnt mean I gave up, cause I didnt. I tried to start my own business thinking I could make my own hours, not answer to a boss. But found my customers were my boss, and they also wouldnt put up with my problems. These problems effect every aspect of my life.

It has been 5 months since the pain meds were takin away, and in all honesty I would jump at the chance to have them back. I never realized how much they helped. I would estimate on most days it took 35 to 40% of the pain out. That is a lot compared to the 100% I am feeling 24/7 now.

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

Hey Jules,

I don't get mad because someone tells the truth. Sometimes learning a truth can make me stop and go back to the drawing board, but I believe in truth. I'm working on a reply and I'm working on the articles for the website, but right now I'm not working much on either.

I'm having a kinda rough time with pain, and doing all I can to limit it without taking more meds. The problem is that doing all I can really means doing less of everything; pain goes down when you don't aggrevate it by doing things.

Then there is the fact that my son brought me some stuff to smoke that is supposed to help with the pain. Well, when I smoke it I do less stuff, so my pain goes down. I guess its working. This stuff he brought me makes music sound better too...imagine that...Vic

I understand totally Vic! Great to have a son like that!

Jules

would this be stuff which is good when baked in cookies?

I tried it a couple of times but hurt SO much when it wore off was never worth it. I guess it's the muscle relaxant properties that kill me.

enjoy......

Froggsy xxxxxxxxxxx