I was diagnosed with RSD in 1999, and it was unbearable. The doctor told me they had never seen the skin changes so quickly. But the fast skin changes was lucky for me, that the doctor recognized the RSD and started immediate Stellate Ganglion Blocks. I have some damage to the bone and muscle, but not too bad, and I had a severe case of RSD that went into remission with the blocks. I now do not have to take pain medications, except for over the counter, and I have been truly blessed. What I do not understand, is that if Paula Abdul has RSD like I had, there would be no way for her to work (it is too hard to just breathe and not commit suicide) If it is in remission or cured as she says, why all the drugs?

Hi there,
I am so glad that your RSD is in remission.
Please let me introduce myself:
My name is Alison, I am 12 years old (nearly 13) and I suffer from RSD type 1 in my left leg and right arm. I first developed RSD in my leg on the 16th March 2007 after an ankle sprain, I was diagnosed with RSD 4 months later.
2 months after diagnosis my PM doctor prescribed me "Amitriptyline" to help with the depression, but I suffered from a nasty side effect of "blurred vision", this resulted in a knock to my right arm ... I was diagnosed with RSD 2 weeks later. The RSD in my arm HAS been into remission, but the RSD keeps flaring up when the weather is cold etc.

I agree with what you are saying about Paula Abdul, I can't go to school because of the pain. Some people although there RSD is in remission, still have to take pain meds.

Take care

Hi bitty,

I have quite a few RSD friends who still work despite their illness.
To some it is the destraction they need to keep from focusing only on their pain.
Of course it does need a very supportive employer and good pain management but it can be done by some who are able to adapt their work to fit in with any disabilities there maybe.
I wish I fell into that category but I don't and was inclined at first to think they did not have the same amount of pain I had but that is not so--I should never have made that assumption--they are people I admire very much.
Best wishes
Tayla

Welcome to the forum.

I too am pretty much in remission due to lots of good medical care and SGB's.
I am still not able to work though. I tried going to work 3 different times and got down. I finally realized I can't do it.

As Tayla said though, there are people who can work with it but again I think they had the help also to get it into remission really quick and feel the need to keep going. I have a friend that is a Nurse. She always comes to mind. Every time I have surgery at our hospital, she is there. She is a great caring person.
Anyway, she has it in her left foot. She told me everytime she feels it coming out, she goes and gets a block. She's had it for at least 15 years.

Other people have it much worse. I was like you. I was so suicidal, my Dr. put his office staff on watch for me. He was on call for me day or night because of the pain and my suicidal tendencies. It seemed like it took us forever to get the pain calmed down. Actually it did take about 7 years. We finally got it to the point that I could focus on living about 2 years ago. I have delt with depression all my life but when I got RSD, it seemed like it was going to finish me off.

I think when it comes to working, I think it depends on how fast it is caught, the care a person gets, how bad the RSD is, and some people also have no choice but to try and work because of financial difficulties.

I'm glad you are in remission. We need stories on here of this kind to help others see that it can be done.

I'm also glad you found the group. You will learn a lot here and enjoy everyone here.

Ada

One of my doctors suggested there are different levels of remission and probably no one ever has a truly complete remission since it's always in danger of returning. There are also different reasons for the drugs. Some suffers have more or less trouble with various symptoms. Most everyone with symptoms, I believe, have sleep disorders. Then there are the many other problems as well which might or might not require medication.

Hi Bitty,
Welcome to the RSD family.
I have had pain all my life from a birth defect. RSD came with the hip replacement in 1999. (needed it from birth defect) I was only out of work for 3 yrs and just had to go back pain or not. I was going crazy at home. Belive me working was extremly painful and some days I thought the pain would kill me. But at the time, I refused to let this thing called RSD win. In 2005 the pain got to me. I remember driving home crying all the way. I wanted to find a tree I could hit so that I could end it all. So people can work with RSD. They work harder than anyone else because of the pain. I've lost alot to RSD. the use of my foot, more pain in my hip than before the hip replacement, my house. But what I miss the most is working. Feeling like I am doing something, being "normal". God Bless all of you that are still working. I know its not easy.

Sue K

I'm one of the people who are still working. As mentioned by Tayla, it's a distraction plus I simply must...

I love the people I work with, they're like family and so supportive. I love my job as well...I help protect the environment while saving people big bucks at the same time. It's very fulfilling for me. My husband also works at the same company, same field.

Being idle just heightens my senses. I try to avoid the pain as best as possible. There are days though, when it get's so bad it's difficult to carry on without having to run to the microwave every half hour to heat up my heat pads! My fingers get so cold they burn, especially when typing, (like right now) It's painful to walk, so that walk to the microwave may help somewhat with my hands, arm and neck but the rest of me hurts...Can't win!

But I'm afraid to go to bed...so here it is almost 2:00 am and I have to be at work for 8:30 am. I'm afraid of the pain that will be there when I have nothing to focus on to avoid it. In a few hours I will try to get out of bed (although my lower back get's stuck), dress a 7 year old, make sure the teens have their lunch money, keys, have something in their tummies and the dogs are fed and walked (my son does that part this winter) then drive an hour to work and spend the entire day trying to focus focus focus! Sometimes I focus so much I forget to go to the bathroom or eat...if I don't move I get pretty stiff so I'm working on all this.

Putting on a straight face or forcing a smile can be difficult at times. I've had some good days though, but lately they are few and far between as I have it in all extremities. I guess full body, including lips and teeth. Everything is difficult to do.

I do all this number one, because I have to...
Financially
Mentally
Physically

We're trying to avoid Foreclosure right now actually. I have to file Chapter 13 because of tenants we had who really took us around the corner to the dump. (Dumped everything we had, even 401K) Financially, I dont see me being able to stop my 12 hour planet saving days! Luckily it's low stress and slow paced and it pays extremely well...

Mentally I was putting off the foreclosure and trying to just survive with every day things while trying to deal with my health, appointments etc. We have all apartments filled and I raised all the rent, but now I have $2000 worth of gas and electric bills which just popped up from December! Does it ever end?????????? I really have to get going as I have until the February 4th until proceedings begin to file. Just trying to get that hefty attorney fee before he can stop it!

Maybe my schedule, financial problems have caused my full body symptoms, not sure...but I just can't stop. Too many people rely on me, too much to take care of which I have to force myself to do. I'm the staple in the family...what would they do without me?

I guess deep down inside, as I feel worse and worse, I realize I may have to give in at some point and surrender if my body stops functioning completely...but until then I just have to try. I desperately try to work around it as much as I can. I spent $86 a CVS getting warm wraps and joint creams this evening. No wonder we're in debt! Last night it was $60 for prescription refills and bandages for my skateboarding, weightlifting son!

Anyways...I hope this explains somewhat why some of us work in spite of it all....


Welcome!

Hi bitty,

Maybe the only way ms Abdul can continue to work is by taking so much of a drug that she appears drunk.

I may be violating a rule by saying this, but: There is no reason to assume that her behavior proves she isn't able to dress herself or do anything else. She appears stoned, but not too stoned to dress herself; just stoned enough to look silly...Vic

Yes Vic,
I agree we can do quite a bit while we're stoned! Sometimes I feel so drugged up from my meds I slur....quite a bit actually!

Luckily everyone in my life knows it's from medication to control pain, but then again I might get different feedback from others if I was in the spotlight like Paula. The media tends to pick on people as well...I never support that and never take to much of what the media wants me to see! I suggest we all not take the media to seriously!!!!!

I won't judge Paula because I don't know her. She may have different symptoms and handle her meds differently. Lack of clear thinking is also associated with this illness...

I take my medication when I get to work, because I know I won't be driving for the next 12 hours. I take it periodically, at the appropriate times throughout the day. I take my last dose when I'm already home, again to avoid the driving. It's strong stuff and if I were to drive like that it would be like driving drunk which I'm firmly against.

Hi GHL,

I agree that most of us know that we may need drugs in order to survive, but we’re too afraid of becoming addicted to take more than the minimum amount necessary. We don’t like the side-effects and we may have to take them for a long time; more reasons to take as little as possible.

I think Paula Abdul chose to take high-dose ketamine in order to continue her career. I don’t think I’d have made that choice, but I didn’t know that the next 28 years of my life would be filled with pain. Had I seen my future, well, I dunno.

Finally, while I was taking five 7.5mg hydrocodone daily, I got into two slow-speed accidents in one week. Until then, I thought I was a safe driver, but safe drivers don’t cause accidents. I paid for the repairs (less than $500.00 for both cars – very minor), and I never got behind the wheel again…Vic