I'm new here and have RSD and Fibro to name a few!!

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New Member

Date Joined Oct 2007
Total Posts : 1
   Posted 10/15/2007 6:07 PM (GMT -6)   
Hi everyone, I'm new here and wanted to tell you some about me. I have RSD and fibromyagia. Also arthritis and degenerative bone and disc disease. I'm only 53 but have had pain for a very long time. I didn't know I had the fibro til I went to a rheumatologist about my other problems. I also see a pain specialist for the RSD. I got the RSD after a total knee replacement in March of 04. My ortheopedic surgeon blamed it on the passive motion machine I was in that caused tibial nerve damage that has now gone into the RSD in my right foot and leg. I feel it has spread. I've gone through a bunch of treatments for the pain and meds with no help. Now I'm waiting for a SCS implant to see if this will control some of the pain I'm in. On top of all this my husband of 24 years couldn't deal with this handicap and am now going through a divorce. It's put so much stress on me that I now see a psyciatrist for the depression I have from all this. I know how sick one gets of the pain. It keeps me awake at night. I have family and friends that don't understand that I'm in pain 24/7. I only take topomax and have the fentynal patch for the pain. I've gotten off all the other drugs that I didn't feel helped anyway. And now my one friend keeps on me about being addicted. I need these to just keep the pain down a notch so I can atleast get through my day. I don't drive anymore. I use crutches to get around. I've pretty much lost most of my life I use to have. I keep quiet about how I feel around these people because I only hear about it and they don't understand anyway. Most of the time they are angry with me because I'm not feeling good to go places. It hurts to move or even to sit here and type this. Well I hope this gives you an idea of who I am. I'm really a happy person most of the time and try not to let this evil get me down but it does. I understand where others are coming from when they talk about pain. I've lived with it long enough and am very sympathetic to all that have to live like this. My prayers are with you all.

Veteran Member

Date Joined Mar 2005
Total Posts : 4305
   Posted 10/15/2007 10:09 PM (GMT -6)   
I'm so sorry that you are having to go through all of this and I know first hand as to what you are having to deal with.My now ex-husband came home one day and told me that he wanted out because he was tired of having a sick wife.I have crohns disease,RA,AS,and sejerns and also have pyderma gangransum(sp) so I had alot going on and he just could not handle it any longer.I was crushed but I now look back on it and I now know that I am better off.So it you would like to e-mail or post her I will help in any way that I can.

Forum Moderator

Date Joined Jan 2005
Total Posts : 9152
   Posted 10/16/2007 8:47 AM (GMT -6)   
Hi tenderheart and welcome to our family! It's a shame that those around us can't or won't understand unconditional love. To leave you because of a disability is dishonorable. I'm so sorry. The folks here tho will always be around to support you...we won't bail on you. I'm very glad you found us...

Co-Mod Fibromyalgia & Chronic Pain Forums
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)

New Member

Date Joined Dec 2007
Total Posts : 11
   Posted 12/26/2007 2:33 PM (GMT -6)   
People who haven't been there will never know the experience of awakening in the middle of the night screaming and crying like a baby from uncontrollable pain. I don't judge people and they are going to do what they are going to do. Karma is like a rubber band it will stretch only so far till it snaps back with logrithmic force.
Sorry we have rsd,pincushion1
ps I also got divorced due to chronic pain

Regular Member

Date Joined Jan 2006
Total Posts : 83
   Posted 12/29/2007 12:37 PM (GMT -6)   


I'm not new here im just not on my because of my pain. mad   but I do have rsd and have had it since 2002..in November 2002 i feel down a flight of stairs and i have two very severe sprained ankles...at the time it was 3 days before my 18 birthday and i was cutoff my parents insurance..so i was brought to the hosptial and they put me in soft casts...the pain would not go away..eventually i got insurance 2 yrs later and went to an orthopedic surgeon and took mri and said i was a mess...i had several torn liagments and tendons and on top of that i was born with an extra talus bone which is in your heal..i underwent surgery on 9-21-04 it was 3 hr surgery i had to stay in bed for a month but it ended up to be longer because of complications...then on 6-7-04 he did the right ankle that one was just as bad same recocupration time...i noticed my toes were turning blue...not to mention..from 02'-04' in both ankles in had a total of between both ankles 40 ankles sprains...my ankles were really unstable..when he went to take of the hard cast and put the soft one i had something called alloydia which is extreme senstivity to touch plus my circulation was bad he said that wasnt a good thing he thought i need to see a pain specialist STAT..he said shauna im pretty sure you have a disease called rsd and it was probably from the inital fall back in 2002 ....i had six sympathetic nerve blocks by the second the doctor knew...but they just had to make sure...one the last one something went wrong and the anesthetic went into both my leg and realized that i had rsd in both my ankles and legs..six months later i became full body......on january 2,2006 i fainted and hit my head and started have myoclonic seizures which i never had before...i was admitted to the hospital and have been hospital numberous times since the i faint alot and have myoclonic episodes that can last up to 3 hours in all of my extermities including my head i have spent 9 weeks in a nursing home and at time i was 25 i just turned 26 in november last tuesday i fainted out of my wheelchair and ended up with a minor concusion and contusion all my body and a destation of my stomach 4 fall in a year and i faint quite a bit my doctor seem to think its from the rsd...my pain pills dont even help...but i am a fighter...im at stage 3...i have a neurostimulator in my spine for pain control it doesnt though... plus i have now immune system...i get sick quickly i have oral thrush twice within 3 months the first time it landed me in the hospital for 8 days and the in a nursing home again and homecare again...if you want to talk about your rsd i would love to offer any info i have...wish you pain free days shauna

Diagnosed with RSD 11/02 (full body as of august 06)
in both left and right ankles (due to major slip and fall in 11~02)
-2 ankle surgeries multiple tendon and ligament repairs,excision of talus bone
neurostimulator implant 5~06
myolconic seizures 1~07
fainting spells ~since i was about 15 yrs old
myofascial syndrome ~8~07
I'm on nine meds mostly pain meds and muscle relaxers stool softner and a multi vitiamn
Just got one Title 19 in July
Was denied SSDI in the middle of appealing

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