The "composition" of illness support groups.

[DawnCt1]

i was recently diagnosed with an "uncommon complication" of my surgery, RSD or CRPS. for some unknown reason the sympathetic nervous system is triggered resulting in swelling, weakness, pain and stiffness, etc. in this case my right hand. my surgeon switched me to a different PT department and my hand has taken priority over my shoulder rehab. i found a "support group" for people with the same condition and asked for info with regard to their experience. i am not sure that was a good thing for me to do even though i got very good answers and comments that i was fortunate to have an early diagnosis. one other poster asked if it would ever go away. the answer she got was that no one on that board has ever had it go away. that was a discouraging answer. now i am thinking that RSD may be discribed as "uncommon" in the medical literature because there has to be varients of it. some people might get it, it goes undiagnosed and it goes away. other people get it, it gets diagnosed and treated and never gets written about or "counted" in the number of cases. the same can possibly be said of support group message boards. until something becomes "chronic" would someone with an acute illness necessarily seek out info on a message board? my orthopedist said "it will get better". the physical therapist said "it can get better". Spring training for the major leagues starts in 52 days. I plan to be ready in case they call me.

 

[escape]

I think you're right - you're probably reading about chronic cases on the support boards and not the temporary cases. I visisted a board about something that was troubling me and quite frankly, it left me depressed. As it turned out, I didn't have many of the side effects that the others experienced.

I think you are doing the right thing by keeping positive. Take the info with a grain of salt and do everything possible to get your hand and shoulder back to "normal".

As for the spring training - I wouldn't stay home waiting for that call but like you said, it's good to be prepared.

 

[LuvN~Travel]

That's one thing over the years reading on our support group for our daughter's syndrome, that the answers aren't always as 'pat' as some people think. Even among the doctors. We've gotten different answers to various things over the years that definitely didn't agree. In our daughter's case, we just take it as it comes. She doesn't fall into any 'one' category fully.

Hopefully, yours is just temporary. I know my sister had a blood problem last year that gave her fits for some time. And, most people were saying it eventually led to surgery. However, she is doing quite well lately, and even when she had surgery on her neck a few months ago, her blood levels were very good.

Good luck with your PT.
Kim

 

[DawnCt1]

i have resolved today that when i recover from this, and i am sure i will. i am going back to that board and tell others not to give up hope. that one can recover and get better. there maybe someone like me who "just checks in" and gets discouraged when they see nothing but chronic situations. this isn't to discredit there experiences because this condition can become chronic but if one is newly diagnosed they need to know that someone out there did get better.

 

[Poohnatic]

Dawn, as with any issue, there are some who will improve, some who will stay the same and some who will get worse.

RSD is one of those disorders that if someone improves, they're probably not going to be on a support website. My sis was diagnosed with it just over a year ago-and her Neuro told her that it would take up to 24 months to see it stabilize. She would no longer be able to work in her chosen profession because it required her to be on her feet all day-and she had RSD in her foot and leg.

My own personal situation is that I've had numerous surgeries on my wrists (name a wrist ailment, and I've probably had surgery for it). I'm a rare one-my wrists are much better than what the doctor even predicted, in part because I moved to a warmer climate. Had I been a member of an online support group, I probably would have shared that info with others.

Good luck with the RSD-I think that because it's a newly recognized disorder there are probably people who suffered through it and improved. Because they didn't have the RSD diagnosis, they're probably not on those websites.

Suzanne

 

[VioltePrincess]

personal experience with suport boards....

when I was diagnosed with uterine cancer I was referred to www.hystersisters.com -- a great resource. they have a variety of message boards, including one for women anticipating surgery, another for women who are recovering after surgery, one for cancer patients, etc.

I posted on the surgical boards when I had my surgery, and I was a pretty frequent poster on the cancer board when i was ill. and while I was first recovering I'd pop in and let everyone know how I was doing.

but Ive been cancer free for over a year now (thank G-d!), and I find I don't go back to the cancer forum...most of the women there are actively treating for the disease, and the ones who have successfully overcome the disease tend to move on, and don't ost on the board anymore.

 

[DawnCt1]

Dawn, as with any issue, there are some who will improve, some who will stay the same and some who will get worse.

RSD is one of those disorders that if someone improves, they're probably not going to be on a support website. My sis was diagnosed with it just over a year ago-and her Neuro told her that it would take up to 24 months to see it stabilize. She would no longer be able to work in her chosen profession because it required her to be on her feet all day-and she had RSD in her foot and leg.


Suzanne

how is your sister doing now?

 

[Lachesis00]

What is RDS? My sister has had issues like you described but it happened during and afte her first pregnancy. It got worse which each one and affects both hands and feet now. They thought it was vascular, but never have been able to pinpoint it. She has been to a ton of doctors over the past 10 years. I think maybe it's gotten better since moving to AZ. I will have to check out her hand when she comes over. It use to be swollen like a sausage and weirdo molten colors of blue, gray and purple, like it was bruised. Really weird.

 

[DawnCt1]

What is RDS? My sister has had issues like you described but it happened during and afte her first pregnancy. It got worse which each one and affects both hands and feet now. They thought it was vascular, but never have been able to pinpoint it. She has been to a ton of doctors over the past 10 years. I think maybe it's gotten better since moving to AZ. I will have to check out her hand when she comes over. It use to be swollen like a sausage and weirdo molten colors of blue, gray and purple, like it was bruised. Really weird.

RSD is reflex sympathetic dystropy (old name) and is now called CRPS or complex regional pain syndrome. It usually occurs after trauma such as a fractured leg or arm but it can happen after surgery. They don't know what causes it. The sympathetic nerves that control sweating, constrictions and dilitation of blood vessels, the autonomic nervous, somehow gets a wrong signal, although that hasn't been validated. its a mystery. they do know that scrubbing,massage, rubbing with rough textures, and carrying weights, seem to reverse the "trend". I hope so. i am carrying my 2 pound weight with me everywhere.

 

[Poohnatic]

Dawn,

She's doing okay-not great. She's at 20 months post injury and now that it's cold, she's having some problems. However, she just completed school to become an LPN (did a 15 month program in 11) and is looking into jobs while she goes on to finish a surgical RN program.

Her injury was at work-and the workers comp board finally agreed that the RSD was a direct result of the severed tendon in her foot. Believe it or not, her doctor strongly recommended the nursing program. She's a natural at it.

She's taken a page from my book and is seeking a new home further south. The NY winters are hell on RSD, and I suspect you'll say the same about CT. Since moving isn't always an option, finding a PT program geared towards RSD is extremely important.

With ANY injury, PMA is what makes or breaks it. One only has to look to some of our fellow DISers to see proof of this. If you look at this diagnosis as a stumbling block rather than the end all-be all, you'll fare MUCH better. That's been my personal perspective as well. My coworkers take one look at my leg and are amazed that I even work-PMA is what gets me through.

Hang in there and think POSITIVE. I'm sure Kitty, Lauri, and many others can vouch for what you're not finding on that support site.
Suzanne

 

[debbi801]

Three years ago, I broke my heel bone stepping off a curb wrong. After a couple of weeks in a cast, I started having excruciating pain in my toes and where the toes connect to the foot. My ortho. took the cast off, re x-rayed, break is healing the way it should, no given explanation to the pain. By this point, if you gently blew on the toes, it was agony. Forget anything touching them. Many tests later, RSD was my diagnosis. My ortho. did tell me that it was an uncommon response to the trauma I had suffered to the foot.

I dealt with the pain through pain killers until the break healed. At that point, I started physical therapy. The PT helped, so did the excersizes they gave me to do on that foot. Cortisone shots did not help me at all.

However, three years later and I am not completely pain free. I can go days or weeks without an issue and then I can't walk without pain (although the pain is no where like it was). It is just something I've learned to deal with and I try to recognize the signs of a flare up to stop it before it gets bad. I've gotten better at that--we were in WDW in June and I was able to walk the parks for a week with just some occasional discomfort.

Just be prepared for flare ups. And, lots of different suggestions on how to deal with it. Because it is uncommon, there is not a lot of documentation on how to help. My ortho. was of the idea that they'd start treatment with the least invasive treatments and go on from there.

Good luck. Feel free to PM if I can answer any other questions.

 

[DawnCt1]

Dawn,

She's doing okay-not great. She's at 20 months post injury and now that it's cold, she's having some problems. However, she just completed school to become an LPN (did a 15 month program in 11) and is looking into jobs while she goes on to finish a surgical RN program.

Her injury was at work-and the workers comp board finally agreed that the RSD was a direct result of the severed tendon in her foot. Believe it or not, her doctor strongly recommended the nursing program. She's a natural at it.

She's taken a page from my book and is seeking a new home further south. The NY winters are hell on RSD, and I suspect you'll say the same about CT. Since moving isn't always an option, finding a PT program geared towards RSD is extremely important.

With ANY injury, PMA is what makes or breaks it. One only has to look to some of our fellow DISers to see proof of this. If you look at this diagnosis as a stumbling block rather than the end all-be all, you'll fare MUCH better. That's been my personal perspective as well. My coworkers take one look at my leg and are amazed that I even work-PMA is what gets me through.

Hang in there and think POSITIVE. I'm sure Kitty, Lauri, and many others can vouch for what you're not finding on that support site.
Suzanne

I was going to PT locally. The orthopedist was horrified that they didn't recognize my RSD, even if they didn't know what it was, my hand didn't look normal and I was complaining. He has me going to him PT even though its a 30 minute drive, they are very focused on my RSD with the shoulder rehab being secondary. Its not ignored, it just isn't primary. When I first heard the diagnosis, my first thought was "I ruined my life" (with the fall) but I am getting over that. Its only ruined if I say it is, and I am going to have a postive attitude, if it kills me and everyone around me. The smiles don't work for me now but that was meant to be a wink.