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

I didn't realize it at the time, but my son gave me this early fathers day gift an the 50th anniversary of my introduction to the Evil Weed.

Just before the beginning of summer vacation, one day in May of 1957, I learned there is a better reality than the one I was trapped in. (For those who might object to my saying that being high is a better reality: Nope, my reality really, really sucked)

I am pleased with the gift. It's green, but doesn't taste like lawn clippings. It will never immitate the calculated insouciance of a 1967 Panama Red, nor the child-like exuberance of a '71 Maui Wowwie, but it is definitely light years ahead of any '07 South Dakota dirt weed.

It produced a gentle state that made me smile (for several hours); all things considered.....I've had worse days...Vic

P.S: Yes, Frogga, but did you inhale? The nice thing about baking it is that you always have something to eat when the munchies turn you into a mindless omnivore.

I recal PMing you the sugestion you try it for your apetite problems back on ol B1.. was never quite sure you werent offended by my sugestion. It realy does wonders for me pain and stress wise and it does help the apetite alot, my stomach just isnt happy with food these days.. and the nausia it realy helps when nothing else seems to, lungs dont like it so I have to switch to brownies.. mmm..

Be well bud,
Sandra

Hi again Jules, and everyone,

I waited to reply until I finished my post on symptom migration, which I will post right after this one.

The only thing approaching 100% in medicine is the smallpox vaccine, and even it has been shown to cause the disease in a tiny, tiny percentage of the population.

I don't claim that GSE prevents symptom migration but I do believe it will delay it for most people. I also know I could be 100% wrong; well, 99.9% wrong; it works for me. I wish it had worked for you.

I won't talk about cyanosis here, because I am working on a post on this topic right now and hope to finish it soon. I will say that there are several known causes for cyanosis, and that except for RSD, it is always treated as a critical sign that must be reversed.

No one knew how to reverse it in RSD, giving the "experts" time to realize that it is not a sign of imminent death or gangrene. Time to decide to pretend it doesn't even exist. But enough for now...more later...Vic

Speaking - or not - of cyanosis, I just got an email notification from Amazon.com of the following:

Oxidative Stress and Neurodegenerative Disorders (Hardcover)
by G. Ali Qureshi (Editor), S. Hasan Parvez (Editor)

Book Description:

Oxidative stress is the result of an imbalance in pro-oxidant/antioxidant homeostasis that leads to the generation of toxic reactive oxygen species. Brain cells are continuously exposed to reactive oxygen species generated by oxidative metabolism, and in certain pathological conditions defense mechanisms against oxygen radicals may be weakened and/or overwhelmed. DNA is a potential target for oxidative damage, and genomic damage can contribute to neuropathogenesis. It is important therefore to identify tools for the quantitative analysis of DNA damage in models on neurological disorders. This book presents detailed information on various neurodegenerative disorders and their connection with oxidative stress. This information will provide clinicians with directions to treat these disorders with appropriate therapy and is also of vital importance for the drug industries for the design of new drugs for treatment of degenerative disorders.

* Contains the latest information on the subject of neurodegenerative disorders
* Reflects on various factors involved in degeneration and gives suggestions for how to tackle these problems.

http://www.amazon.com/gp/product/044...=pe_pe_snp_091

Yours for only $170.00 and most likely a better mind than my own in order to comprehend it.

Mike

Hi Everyone,

http://www.inaf.ulaval.ca/docs/Ramassamy.pdf

I haven't gotten a chance to read it yet. But it appears to be worth looking at. Hugs, Roz