HealthBoards

HealthBoards (https://www.healthboards.com/boards/)
-   Reflex Sympathetic Dystrophy (RSD) (CRPS) (https://www.healthboards.com/boards/reflex-sympathetic-dystrophy-rsd-crps/)
-   -   RSD and work (https://www.healthboards.com/boards/reflex-sympathetic-dystrophy-rsd-crps/964082-rsd-work.html)

snowman2 09-29-2013 04:24 AM

RSD and work
 
Hello out there I thought I would ask what people do with there days and if your able to work ? I haven't been able to work since I came down with RSD/ CRPS as I only feel good here and there and if this illness decides to act up then I'm done for hours I feel best in the morning but it doesn't last long and I'm going crazy stuck at home so I thought if I could find something to do it would help so here's the big question what do you do with your day to keep busy besides trying to feel good . Do you volunteer somewhere as I thought I could do that , I miss being out and around people but then I get stuck because what can I volenteer for if I don't feel good anyway I'm looking for ideas snowman2

Violet Climber 09-30-2013 09:56 AM

Re: RSD and work
 
Hi- I was diagnosed 7 months ago with RSD following wrist surgery. I do not know or understand a lot about it at this point but I am trying to learn. I totally understand the horror that goes through your mind when you think of all the activities you might not be able to do. I too am trying to get a grip on this. I have a motorcycle, snowmobile and 4-wheeler setting in my garage. I also was told to stay off the computer because of all the stories you will see about RSD. I can only tell you that it wasn't until a month ago when I was researching RSD that I read that ice should never be used. My therapist has been using ice on my hand regularly for six months. So that being said, I think we owe it to ourselves to do some research because so many care gives don't have a clue about RSD. Did you have any adverse reactions to the nerve blocks? I am trying to keep a positive attitude. Maybe we can help each other.

snowman2 10-11-2013 07:11 PM

Re: RSD and work
 
[QUOTE=Violet Climber;5228103]Hi- I was diagnosed 7 months ago with RSD following wrist surgery. I do not know or understand a lot about it at this point but I am trying to learn. I totally understand the horror that goes through your mind when you think of all the activities you might not be able to do. I too am trying to get a grip on this. I have a motorcycle, snowmobile and 4-wheeler setting in my garage. I also was told to stay off the computer because of all the stories you will see about RSD. I can only tell you that it wasn't until a month ago when I was researching RSD that I read that ice should never be used. My therapist has been using ice on my hand regularly for six months. So that being said, I think we owe it to ourselves to do some research because so many care gives don't have a clue about RSD. Did you have any adverse reactions to the nerve blocks? I am trying to keep a positive attitude. Maybe we can help each other.[/QUOTE]
Hi and thank you for responding 2 years into this I'm more aware to this illness but never did I expect it to be this bad I first had it diagnosed in my left foot after I had corrective surgery 2 weeks into recovery I was diagnosed with RSD and was told that they needed to treat it aggressively so I began doing SGNBs every week this went on for over 6 months I felt like a cancer patient but the doctors said hang in there we caught it early and have a good chance to kick it into remission but instead it spread to my other foot so they began doing one side one week and the other side the following week I was so week I couldn't take it anymore after another 6 months of SGNBs I put a stop to it as I became acclimated to the versed ( sedation ) it wasn't working anymore now I'm inboard for the SCS and that's the last thing to try I pray it works I can't do anything anymore I've sold are lake home lost my business sold all are toys except the snowmobiles as ill die before I give those up my wife and I just go on nice days its been a giant adjustment in our lives and I'm learning through here how to live with this . It helps me so much!!!! To be able to talk to someone , I hope to here from you snowman2

snowman2 10-12-2013 06:08 AM

Re: RSD and work
 
[QUOTE=Violet Climber;5228103]Hi- I was diagnosed 7 months ago with RSD following wrist surgery. I do not know or understand a lot about it at this point but I am trying to learn. I totally understand the horror that goes through your mind when you think of all the activities you might not be able to do. I too am trying to get a grip on this. I have a motorcycle, snowmobile and 4-wheeler setting in my garage. I also was told to stay off the computer because of all the stories you will see about RSD. I can only tell you that it wasn't until a month ago when I was researching RSD that I read that ice should never be used. My therapist has been using ice on my hand regularly for six months. So that being said, I think we owe it to ourselves to do some research because so many care gives don't have a clue about RSD. Did you have any adverse reactions to the nerve blocks? I am trying to keep a positive attitude. Maybe we can help each other.[/QUOTE]
My message account was full so I didn't get your response but I also hope we can help each other and keep as positive as possible I'm working with a coach on being positive that helps a lot snowman2

Violet Climber 10-12-2013 06:37 AM

Re: RSD and work
 
[QUOTE=snowman2;5231917]My message account was full so I didn't get your response but I also hope we can help each other and keep as positive as possible I'm working with a coach on being positive that helps a lot snowman2[/QUOTE]

So sorry to here about the failure of the snb. I won't have another block. I have had severe headaches nonstop since I had the block. Dr are saying its not from snb. I'm not buying it. I've never had headaches before. I can't even lay my head on a pillow. Yesterday I saw my first neurologist. He ordered four mri to be done ASAP. I deal with workers comp so that may or may not get approved in the next three mths. He gave me neurotin. Within half hr the pain in my head subsided. It felt so good as I've had these headaches for two mths. Problem is in thirty min I also broke out in a itchy rash. He had said to discontinue immediately if I got a rash. Just my luck these days. I watched a video about a woman with rsd. She said to take something you used to love to do and with an open mind find a way to modify so that you can still do it or participate on it. Something to think about. I know it seems impossible at first but give it a 100 0/0 try. We still have a lot to give. We just have to figure out how to do it.

snowman2 10-12-2013 08:14 AM

Re: RSD and work
 
[QUOTE=Violet Climber;5231923]So sorry to here about the failure of the snb. I won't have another block. I have had severe headaches nonstop since I had the block. Dr are saying its not from snb. I'm not buying it. I've never had headaches before. I can't even lay my head on a pillow. Yesterday I saw my first neurologist. He ordered four mri to be done ASAP. I deal with workers comp so that may or may not get approved in the next three mths. He gave me neurotin. Within half hr the pain in my head subsided. It felt so good as I've had these headaches for two mths. Problem is in thirty min I also broke out in a itchy rash. He had said to discontinue immediately if I got a rash. Just my luck these days. I watched a video about a woman with rsd. She said to take something you used to love to do and with an open mind find a way to modify so that you can still do it or participate on it. Something to think about. I know it seems impossible at first but give it a 100 0/0 try. We still have a lot to give. We just have to figure out how to do it.[/QUOTE]
Yes that is true we do have a lot to give and to modify it is what I was trying to say like snowmobiling I can't go all day but if we get out for a few hours I really appreciate that and constantly working on doing that with everything and staying positive helps as well . I know there is a lot to do with our lives and the sooner we can except this illness the better it's had a big impact on me but I'm learning everyday and from people on here , having someone to talk to helps a lot , I didn't do well on neurotine I had side affects so stopped taking it . I'm sorry your having headaches I haven't had that at all but I do get nauseous a lot the doctor said its from all the pain I'm in so I take ondansetron 4 mg that helps a lot , I also take oxycodone and that helps my pain and I know people take that for headaches maybe you could try that the dose I take is 10/325 oxycodone

jewlz67 10-12-2013 11:55 AM

Re: RSD and work
 
Snowman, remember when I told you about wanting to start a support group? One of the ideas running through my head is to have a video support group. Like how people have conference calls....just do it to where people can talk face to face, so to speak, and give input as to how they are handling things and be there to give support on the bad days. I am trying to figure out how to go about doing it now. That's something you can look into to do there. I know you have a heart of gold and I think that is something you could give to help others....and it also helps you! It gives us that purpose in our lives again! Anyways, that is my thought on it all. If you, or anybody else, knows how to do that, please...let me know! I posted on ** on the RSD page that somebody has, asking if anybody is in the Northwest Indiana area. I'm thinking of making my own ** page for this as well. Just a place, like this, where you can either ask questions, vent frustrations, whatever is on people's minds....without restrictions as to recommending websites and such. If I do it, I will post it!

Violet Climber 10-12-2013 12:00 PM

Re: RSD and work
 
[QUOTE=jewlz67;5232006]Snowman, remember when I told you about wanting to start a support group? One of the ideas running through my head is to have a video support group. Like how people have conference calls....just do it to where people can talk face to face, so to speak, and give input as to how they are handling things and be there to give support on the bad days. I am trying to figure out how to go about doing it now. That's something you can look into to do there. I know you have a heart of gold and I think that is something you could give to help others....and it also helps you! It gives us that purpose in our lives again! Anyways, that is my thought on it all. If you, or anybody else, knows how to do that, please...let me know! I posted on ** on the RSD page that somebody has, asking if anybody is in the Northwest Indiana area. I'm thinking of making my own ** page for this as well. Just a place, like this, where you can either ask questions, vent frustrations, whatever is on people's minds....without restrictions as to recommending websites and such. If I do it, I will post it![/QUOTE]
I want to reply to this but I am so tired I can't keep my eyes open. I will reply as soon as I can. Keep smiling.

jewlz67 10-12-2013 12:06 PM

Re: RSD and work
 
[QUOTE=Violet Climber;5232007]I want to reply to this but I am so tired I can't keep my eyes open. I will reply as soon as I can. Keep smiling.[/QUOTE]

Get some rest Violet. It's the best thing you can do for yourself! No worries though, still gonna be here to try and help and just be a listening cyber ear. :wave:

snowman2 10-13-2013 07:39 AM

Re: RSD and work
 
[QUOTE=Violet Climber;5232007]I want to reply to this but I am so tired I can't keep my eyes open. I will reply as soon as I can. Keep smiling.[/QUOTE]
The nice thing about this site is you can talk anytime day or night I'm usually up half the night as the pain keeps me from sleeping . I hope your doing ok I don't know how severe your RSD as where all different but I love to here from people it keeps me going and the ** that jewlz is talking about is another way to talk I know I feel isolated so much as I'm sick all the time from this but I try to do as much as possible . Do you take something for sleep? Snowman2

snowman2 10-13-2013 07:47 AM

Re: RSD and work
 
[QUOTE=Violet Climber;5232007]I want to reply to this but I am so tired I can't keep my eyes open. I will reply as soon as I can. Keep smiling.[/QUOTE]
That would be a good idea to be able to ***** each other at a certain time each week , I'm not sure if that could be done or not with multiple people from different places but that would be a good way to start something . I'm just learning how to ***** I do that every week with my brother so he can see my mom as he lives in California and its been wonderful , I sure hope that you can figure out how to do that or if its ** that would be cool also you go girl!!!! Lol have a great day snowman2

jewlz67 10-13-2013 05:04 PM

Re: RSD and work
 
[QUOTE=snowman2;5232215]That would be a good idea to be able to ***** each other at a certain time each week , I'm not sure if that could be done or not with multiple people from different places but that would be a good way to start something . I'm just learning how to ***** I do that every week with my brother so he can see my mom as he lives in California and its been wonderful , I sure hope that you can figure out how to do that or if its ** that would be cool also you go girl!!!! Lol have a great day snowman2[/QUOTE]

I'm not very familiar with ***** either as far as to do a thing like that. So have you joined the 21st century and got on ** yet? lol

snowman2 10-14-2013 05:37 AM

Re: RSD and work
 
[QUOTE=jewlz67;5232321]I'm not very familiar with ***** either as far as to do a thing like that. So have you joined the 21st century and got on ** yet? lol[/QUOTE]
Yes I did that with the help of my kids lol !!!but now I'm trying to figure out how to ***** with my brother in Taiwan

kimbokimbo 10-15-2013 04:00 AM

Re: RSD and work
 
Hi Jewlz/snowman/violet,

I'd love to join a video call. I'm in Sydney & I don't know anyone experiencing this pain. I'd love to meet you all to chat. I feel very alone sometimes (most of the time). I've had 2 blocks now, the first one worked well and I was walking on cloud nine thinking I had beaten this horrible thing. After the second, I had a big dose of reality and I'm back in the land of pain. I'm finding it hard to get used too. I want to beat this thing, not let it beat me. I'm feeling like I have lost.

Whilst I haven't posted much, I do hop on here every night for support.

Thanks to you all- I know you are all fighting this beast, but you all do help many people like me, even from a comfort perspective.


Love to all xx
Kimbokimbo

[QUOTE=jewlz67;5232006]Snowman, remember when I told you about wanting to start a support group? One of the ideas running through my head is to have a video support group. Like how people have conference calls....just do it to where people can talk face to face, so to speak, and give input as to how they are handling things and be there to give support on the bad days. I am trying to figure out how to go about doing it now. That's something you can look into to do there. I know you have a heart of gold and I think that is something you could give to help others....and it also helps you! It gives us that purpose in our lives again! Anyways, that is my thought on it all. If you, or anybody else, knows how to do that, please...let me know! I posted on ** on the RSD page that somebody has, asking if anybody is in the Northwest Indiana area. I'm thinking of making my own ** page for this as well. Just a place, like this, where you can either ask questions, vent frustrations, whatever is on people's minds....without restrictions as to recommending websites and such. If I do it, I will post it![/QUOTE]

jewlz67 10-15-2013 10:24 AM

Re: RSD and work
 
Kimbokimbo, I can totally relate with the nerve blocks. My first one was wonderful!!! I didn't realize how much pain I was really in until I had the block and the pain stopped. Then when the pain started again and they suggested two nerve blocks, one week apart, I was all for it. The first block I was in more pain than before I had it and the second block put me to where I could barely walk! I am walking better than before but I still need to use a cane. The RSD is now in my left arm, lower back, entire left leg and foot, and my right foot. The pain in my right foot though is just from the top padding of my foot to my toes. Anyways, this wicked disease makes us all, I believe, feel isolated. That's why I love this site, you find out that the things you are going through, unfortunately, others are going through as well. I got the ** page setup so anybody who wants to can join or become friends on it. Its RSD in Northern In. I hope you all will become friends on it and we can talk and share there as well as here.


All times are GMT -7. The time now is 11:59 AM.