been a long timePosted by Kari B on 3/08/03 at 15:37 (112276)
It's been awhile since I have posted here... don't know if anyone will remember me but I had Tarsal tunnel release in Dec 02. I tried to keep posting but I have been in such unbelievable pain. I have now been diagnosed with RSD. I seem to remember that someones mother runs a support group for rsd and that there were several other posters to these boards who suffer with this. I was hoping someone could help me get some information about this disease. I hope all is well with everyone and that you've all been having a pain free 2003!!!! Hugs to all!
Re: been a long timeSuzanne D on 3/08/03 at 16:16 (112280)
Hi, Kari! I've thought of you often and missed your posts. I knew the last time you posted, you were using a friend's computer as yours was not working at the time.
I am sorry that you've been in so much pain and now have the RSD to deal with. I hope Wendy, Laurie, Janet or Tammie - or any others who also have this - see your post and can give you some guidance.
How is your little son? I remember our 'conversations' about him.
Take care. If I can do a search on some info on RSD, I'll post the link.
Re: been a long timeLaurie R on 3/08/03 at 16:21 (112283)
Hi Kari , I remember you . I am so very sorry you also have RSD . I do too... RSD is so very complex .... I can help you out .. Just ask away . Yes your right , their are a lot more people now on these boards that also have RSD then way back when .......
My best to you , Laurie R
Re: been a long timeLaurie R on 3/08/03 at 16:25 (112284)
Hi again Kari , I just posted to you on the TTS board ... Laurie R
Re: been a long timewendyn on 3/08/03 at 17:04 (112289)
it was Caryn's mom - if she does not post soon, I can drop her an email (you may need to remind me).
I have RSD too - but mine has fortunately gone into remission on its own (other than the odd flare up).
Was the RSD because of your surgery?
How are they treating you?
Re: been a long timewendyn on 3/08/03 at 17:05 (112290)
Laurie - how are you? I tried to email you a while ago - but I don't know if it ever went through.
Re: been a long timeLaurie R on 3/08/03 at 18:32 (112295)
Hi Wendy , How are you doing ? I never got your email . Do you have my new addy ? If not it is (email removed) .. You asked how I am doing .... Well I really don't know where to start.... I have decided to have one more surgery ... I am going to have the vein wrap surgery in a few weeks or so . I am waiting on the approvel....
They found that I have scar tissue on my PT nerve .. I had another MRI and a EMG test done ... My Pod will not be doing this surgery . He sent me back to the Ortho doctor I saw in Nov. At that time he had ordered me a AFO brace to see if that would work .WC even bought me a pair of NB shoes that cost them 151.00 .... The brace just made things worse ... He wanted me to try it for three month which was up this month ... He explained the vein wrap surgery more in detail this time.....
That is about where I am at now . Before my surgery I have to have a block done a few days before for my RSD ..
Thanks for asking about me ..... Laurie R
Re: hi kari b (and wendyn too)carynz on 3/08/03 at 20:12 (112298)
hello! I'm still here. Have been taking it very easy since having the shoulder surgery in January, slow to heal but on the mend now. Yes, it is my mother who runs a support group but not for RSD specifically it is a neuropathy support group but I know there are members who suffer with RSD also. The email is (email removed) and you can address your questions to Val. I know she will glad to hear from you so just let her know I gave you the email address okay. I have not posted here since before end of January since it's just not easy to type one finger one arm for any length of time. Today in the Fraser Valley (Abbotsford, Hope, Coquihalla Highway if anyone is familiar) we have blowing snow (or what they think is snow) and high winds which are causing some commotion on the freeway where it is very open. It is -5 celcius today but with the wind feels like -25 celcius not very nice for this part of the country where it usually rains in the winter but the temps stay very mild. I actually had to put on my jacket today when I went out. Kari, I hope you are managing with your post surgery recovery if I remember you had it on Dec 3? What is happening now that you are post op?
Keep in touch. I do read the boards though every few days. My foot has not been too bad since I have been off them since having shoulder surgery and now that I'm back to moving around and such I can feel it beginning to act up again. So here we go.
Wendy, you sound very busy with working and night classes etc. etc. Hope you aren't suffering too much in the -35 temps I have seen you having lately. Talk to you sometime okay.
Re: hi kari b (and wendyn too)wendyn on 3/08/03 at 22:17 (112306)
It is stupid cold Caryn. In the paper - they were saying that if an ambulance gets a call about someone slipping on the ice - they have to respond with lights and sirens (don't want the person to have hypothermia and frostbite by the time they get there)
We are expecting a Chinook tomorrow though!
Re: been a long timewendyn on 3/08/03 at 22:18 (112307)
I am not too bad Laurie - I will try to email you tomorrow.
Re: hi kari b (and wendyn too)carynz on 3/08/03 at 23:09 (112311)
yahoo! do you feel a big headache coming on!
I think the last time I felt cold like that was when we moved here and I thought I'm not going to miss this stuff one bit, but then I can't stand the rain here either so it's a flip between chinook or low cloud cover but then all the flowers are in bloom and it's so green hmmmm.
Re: hi kari b (and wendyn too)wendyn on 3/09/03 at 01:19 (112316)
Caryn - I have insomnia...so I'm up on the computer. Checked the weather forecast and it doesn't look like it will get above zero until Wednesday (whhere did our chinook go?). It's minus 30 right now, and the fog coming from the furnaces and cars just hangs in the air. Looks very eerie out there right now.
I have so many errands to run - but I'm avoiding them because I don't feel like being out more than I have to be.
I have school Monday night and now I have to go (skipped last class because it was so cold).
Re: been a long timeKari B on 3/09/03 at 16:58 (112358)
My doctors don't know if the RSD was because of the surgery or because of my original injury, but most likely they think its from the original injury and the surgery just added more to it. The ortho doc says that I should have had 99% relief after the release but the pain just continues to get worse, so that is why he feels this way. This is a very small town so I have been able to talk to some of his other patients who have also had the TT release and the majority of them have no pain now. I just wonder why I got RSD. I know thats probably the biggest question most people who have been diagnosed but its really bugging me. As for treatments right now, I have had 2 blocks and only short releif, I am taking a pain releiver called Norco (I believe it is vicoden or something related to that) and he just started me on Neurontin 3 days ago. I am praying this will help. I have so much pain that I can barely sleep at night due to the sheet touching my foot, so I try to sleep with my foot hanging off the side of the bed and of course then I wake up to a swollen foot throughout the night. One thing about the Neurontin though is that I am definitely getting sleep LOL... its making me feel so dopey that all I want to do now is sleep, but he says that will go away soon. Thanks for all the feedback from everyone, I knew I could count on you!!
Re: been a long timeKari B on 3/09/03 at 17:01 (112359)
Any info you can share with me would be great... also, has the rsd affected your WC claim?? When I told my lawyer that I was Dx'ed with RSD, her first words were 'Oh no, that's not a good thing!' So, now I'm really worried. How much does the rsd effect your life? How long have you had it? Also, I hope your next surgery goes well... I will keep you in my prayers!!
Re: been a long timecarynz on 3/09/03 at 19:12 (112370)
are you taking the neurontin about 1-2 hrs before retiring at night? I know when I took it I found I was dozing off quite a lot and since I was still working then I decided to endure without the drug because I couldn't stand it that I would doze, nap and then not be able to sleep at night when it came time for bed so to speak. I remember someone else telling me that Ambien? was a good pill to take but I don't know if it's available outside of the USA so that doesn't help me out. Sounds like you have been having a rough go of things but I know with time you will feel better so try as best you can - life does go on we just have to change the path is all.
Re: been a long timeLaurie R on 3/09/03 at 20:52 (112385)
Hi Kari , Thank you for your prayers , I take all I can get ..... Yes my RSD was from my first injury , so WC is covering it .. I have had 11 blocks so far for the RSD and they work great ,the only problem is they don't last ... Only if they did I would be so happy .. I have had RSD now for almost three years ... I think when your attorney said oh on ,maybe because she knows their is no cure for it ... Plus all the treatment you will need and all the costs .. Right now my other foot problems are worse then the RSD is .. That is why I am going to have one more surgery , so in hopes it will lesson my pain over all ..
Please I know it worries you , but read as much as you can about RSD . The most important thing I can share with you is , get early treatment , RSD can go into remission ....
I have always been a difficutl case because I do have RSD and TTS and PF . Now if I just would of had one of the other , I think I would of got better. My treatments conflict with the other things that are wrong with my foot .
Have you been diagnoses with RSD ? Or are your doctors thinking you may have it ? I hope you don't ...
Take care and again , if I can help you in any way , please just ask ....
My very best to you , Laurie R
Re: been a long timeRicky J. on 3/10/03 at 08:39 (112407)
I too have been diagnosed with RSD that spun off from my TTS. I had TTS surgery two months ago. The pain from the RSD is unreal. My doc kinda explained it to me like this. My damaged TTS nerves started fireing intensely all the time instead of when they got aggrevated by me doing too much on my feet. When the RSD sets in the nerves wig out and they just keep fireing 24-7. He said that we need to suppress these nerves by using nerve blocks. He said it was kinda like a computer that was locked up and we need need to reboot it to get it working right. I started getting nerve blocks to calm my RSD. The doc said that we have to stay on top of this by not letting the RSD pain come back. I had 6 nerve blocks in 10 days. Each time I started feeling the pain start comming back I would call the doc and schedule another block asap. My nerve blocks would suppress most of my pain for about 24 hours. Doing these nerve block seems to have done the trick and put the RSD in remmission. I still have a lot pain but it seems to only be the TTS pain. This is a pain I can manage. The RSD pain ruled me, and it was destroying me.