NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Curious (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/200421-curious.html)

Quote:

Originally Posted by LBMDDW (Post 1047935)

Sorry you are in the same situation :(

I have taken to biting my finger quite hard to help me concentrate, maybe not a great idea but work still has to be done. Mentally drained, a good windge help every now and then :) gets it out there.

I don't really have anyone local I can talk to, live in south wales but my family live up north. Not sure they get it either.

My husbands family come from South Wales, they don't get my illness at all. I've been in and out of hospital every year in the 22 years we have been married and nearly died 5 times. Not a card, phone call, nothing, they are just totally wrapped up in their lives. Out of sight out of mind I call it. I'm so sorry you have endure living like this. :hug:

Quote:

Originally Posted by PamelaJune (Post 1047939)

I have some very similiar issues with some in my husband's family as well. I also went thru a very serious illness.....Nothing.....no card, call, etc. Total lack of compassion or caring. Very hurtful indeed.

Gerry

Quote:

Originally Posted by ~Sage~ (Post 1047895)

Yes, yes yes! RSD can go into remission so do not lose hope!

Since I am not a doc, I'll tell you about my trip down RSD lane.

I got RSD from a stroke (brain trauma). I had about 2 months in hospital between acute care and rehab. For many weeks I had complete right- side paralysis. When I got feeling back, it was like a million scalpels slicing me up. The nurses just smiled. :eek:

From there, home where I lived alone, no family near, most past friends stayed away. Air (ceiling fan) going across my skin was excruciatingly painful. Skin on right hand and foot was bright red, shiny, swollen.

Two years after stroke and because of contracture of toes making walking feel as if I was walking on abscessed teeth, all the joints were sawn off and steel pins inserted in my toes for 11 weeks.

This is all back in the early 90s. I had no medical coverage for a few years and was not really diagnosed for four years, at which point I was put on Neurontin.

Intractable pain til from mid 90s til about 2008. I was eventually diagnosed as having RSD by five doctors. I totally agree with everyone here who is out of reach of knowledgeable doctors!

I got the RSD into remission, even though everything I had researched about RSD indicated that was not possible.

Do not give up! I used the most conventional treatment I could, refusing any surgical treatment like implanting of pumps. Personally, I believe that going the distance some doctors wanted may have killed any possible remission in the future.

Finally, when I felt mentally ready in case it was a mistake, I weaned myself gradually off the Neurontin! And out of the active RSD! Work towards that moment in your life! I know it may not be a forever state but it's bee about six years now and who wouldn't take that!

:grouphug:

Thank you for sharing your story. What do you attribute your remission too?

Lottie, I think mostly refusing to accept RSD as my fate, like refusing to go into that stage of acceptance with the stroke.

Fighting it mentally as 24/7 as I could. Refusing to succumb I guess.

I researched til late at night, read everyone's account, and fought.

I refused any invasive treatment because reading all the accounts on BrainTalk's RSD forum, those treatments were way too iffy and I could not risk more pain than I already had.

Mental work. Meditation. Wanting my life back. Wanting to live.

It can happen. I'd like to think I made it happen. Don't know. But I want you all to understand that though it can't be cured, and yes, it may come back, remission is really possible! Think of that every day. See yourself free of it!

I have needed BUT REFUSED a few surgeries. I have fallen a number of times. I am dealing with stuff - spinal stenosis, ankle-that-doesn't-work pain, broken toes, etc., etc., and I am "concerned" (to put it mildly) of the possibility that any injury could set it off again. But I'm so thankful for the last 5-6 whatever number of years since my last Neurontin. I have had four eye surgeries! Two were for retinal tears and hemorrhaging. But I'm okay!

Spend time every day seeing yourself free of this. I wish I knew if that helped but it didn't hurt. :roll eyes:

:grouphug:

Quote:

Originally Posted by LBMDDW (Post 1047935)

I don't really have anyone local I can talk to, live in south wales but my family live up north. Not sure they get it either.

Families, just like OP, don't get it. Period.

When I first moved back to Buffalo, my combo of RSD & Raynauds put me in such agony. My docs asked why I moved back from Florida. :roll eyes:

Anyway, I searched for a support group to see if there was one. I found the girl who had run it, but she shut it down. We did however have interesting conversations. When I asked her if there were any local docs who "knew" RSD, she said she drove to another city to see someone more knowledgable. :(

Maybe you could find a support group within a reasonable distance. At least you'd be talking with people who "get it". Other than that, come here or wherever you find people to talk with online. ;)

Quote:

Originally Posted by heatherg23 (Post 1047886)

depends on treatment. My left foot pain has been gone since 2006 because of the Spinal Cord Stim. I'm always worried if I hit my foot really hard on something that it will come back. I don't know if it's actually possible but you never know.

Heather I think that it can, but I don't have a SCS that might affect it positively to know yet:D... I was in remission for 8 years with my right arm and hand. I thought that perhaps I had 'cured' it after 30 years, but not. I just love magical thinking,for as long as it lasts anyway. :rolleyes: Last August I banged my arm on the garage door as I was taking out trash... and my old friend CRPS smacked me with avengence. :eek: Both arms immediately went berserk.:mf_argue: I guess it's that sypathetic nervous system hyperdrive... ready and waiting to kick into the 'GO' position. I try in every way to engage the PNS to counteract that. Rest, heat, quiet, calm, de-stress as much as possible and try to stay positive in healing... I pray for you that your foot will stay good... keep protecting it as much as possible... :):hug::grouphug:

Hana

Quote:

Originally Posted by LBMDDW (Post 1047910)

Thanks for the responses.

I was diagnosed about a year ago, I have CRPS in my right shoulder I have been working throughout which has been hard trying to put on a brave face but I am at the end of my tether at the moment.

Think I need to take to my doctors again.

I give you a lot of credit for being able to force yourself to get up and out to go to work while dealing with severe pain. Plastering on that brave face for long enough to work is a tough job in and of itself.

There are many on this forum who are really struggling with inadequate pain management and still trying to work. There are some who are somehow balancing work, home life, and reasonable treatment for RSD. There are also many of us who are no longer able to work because of the disability caused by chronic severe pain. You have friends here all long the spectrum who you can talk to or vent to. :grouphug: Our condition can lead us to feel isolated even a room full of people. It has helped me so much to know that I can always find support from someone who "gets it" here.

Please do talk to your docs. You need to get their help to maximize your chances of being able to work as long as possible. Do you have, or does your country offer, some kind of long term disability assistance if that becomes necessary ? In the US, we have SSDI if we have the qualifying work history, but it can take years to get approval. Try to use the time while you can still (somehow) work to get your ducks in a row for how you will be able to manage financially if you become unable to work.

I'll add that I think even with decent pain management, I think it takes a lot of drive to push yourself to keep working/go back to work, but the payoff for that extra pain can be huge. The socialization that happens in many jobs and the self respect/pride in a job well done are mental positives for anyone, but especially important for us. I wasn't prepared for the feeling of being devalued when I could no longer work.