Originally Posted by lorigood243

I am so grateful for all of your posts. I just wish i could meet you all and give you hugs in person for all the help i have gotten here! You have given me hope to live because I know I am not alone and that you are trying to get through your day where you are!

The more posts i read...I say.."oh yeah i have that too" Since there arent any books...if your up to it could you list your symptoms and what you take for it even if its OTC meds. My hubby keeps saying my problems are from all the meds i take but if i cut any of them out , i am more miserable.

I have Abdominal RSD from 3 surgeries and my abdomen is very swollen

I have bad acid reflux take reglan and OTC Acid reducers , lots of tums
Diarrhea Imodium daily
Gastroparesis i am supposed to take Protonix but just cant afford it on my insurance
Sleep apnea wear a Cpap mask
Short term memory loss
constant fatigue i take caffine pills all day (dont drink coffee)
Fentanyl patch takes away tissue burning pain
Methadone very little (it makes me too sleepy)
left arm swelling ( my doctor drains it and i keep pressure on it)
swelling and numbing both feet a little it changes daily
Burning tissue also take Neurotin
Nausea i take promethezine
Swelling and spine pain i take prednisone (long story)
Diabetes metformin
Diabetes Glimepiride
Gas pain take OTC gas ex
Bladder pain i take Oxybutinin
sinus pain and stuffiness OTC sudafed non drowsy once a day
I have always been asthmatic so i use an inhaler for that.

I think thats it.

Im just wondering how many symptoms are all caused by RSD in us or are some caused by the meds we take for it?

Thanks in advance for sharing. I think it may help us all if we see how similar or possibly different our lists are.
Lori

Originally Posted by 1percenter

First, let me say the "ditto" to you about being recently diagnosed with RSD. I hate to hear an enemy of mine (I don't know of any right now) receiving this diagnosis. But any type of trauma to the body is a cause of RSD/CRPS, which includes surgery, gun shots, stabbings, breaks/fractures and sprain/strains. I sat, like most, glued to the TV watching the whole 9/11 unfold. But as much sympathy and empathy as I had for all those who died, I had even more wondering how many individuals would be diagnosed with RSD due to all the trauma, and worse yet, just how long it would take to be diagnosed; and that those individuals would have who to blame? (not that blame is something we need to focus on) I thought I was weird thinking that way, but I knew what I was going through and how I got it: I picked up a box at work (was a admin asst for mayor), it was too heavy, (duh!) immediately dropped it, and heard a pop. Dx at hospital was sprain/strain acromaclavicular joint (shoulder) 4/17/98. 3 mos. later, things weren't right; pain increased, instead of decreased. My arm from shoulder to fingertips, actually was turning black. Family doc (PCP) sent me to ortho (was about to leave to EUROPE w/kids to visit former exchange students) who told me nothing broken, but put a body sling on (reg sling with band that holds next to body) and wanted me to cancel trip. No way! As soon as home, ended up in ER 2x, once 'cuz I couldn't get out of bed next morning, 2nd time, after taking Vicodin ER prescribed & ended up in ICU due to allergic reaction.

Got home, PCP sent me to chiro, lasted 4 weeks pain kept increasing to the hypersensitivity stage; pcp then sent me to neurosurgeon. Tried PT, made it worse and intolerable, PT told neuro; sd thought either TOS or RSD and was on my way to Cleveland for inpatient care (3 weeks total; 1 inpt, 2 outpt all same room...u figure it out) that was all encompassing: OT, PT, treating, and psych. (loved last part...NOT).

1st visit with treating he gave me Stellate Ganglion Block (only works for upper extremity) to diagnose and treat at same time. It was unbelievable...like a magic wand. I could use my arm again, it wasn't cold, and no pain. wow. only lasted 2 weeks, but hey! next one lasted 4 weeks, next 8, then quit working; so doc suggested SCS (spinal cord stimulator). Trial was 8/99, perm 11/99; but my seizures increased dramatically, and somehow with those, the scs leads broke and bent, and revision time came, again, and again, and again, before finally I said stop. By this point, since surgery can cause RSD, it can also spread it, and it did; down my rt leg, and mirrored over to the left side. Time for the pain pump. 3/03. and in 10/03, after a refill, I had an awful spinal headache and found catheter slipped out of epidural space now. Another revision! 3/04 just had doc remove everything and went back on methadone (60MG) and baclofen orally, found a doc back home in Toledo. Once equipment removed, seizures went back to normal amount that my neuro couldn't explain (I tried to tell her it had to have something to do with implants). Years later, she ran across another pt with scs who experienced same thing. Another warning for anyone with any type of seizure disorder.

I'm not an expert on this. Even the experts aren't experts on it. But groups like these certainly do help one another simply because of experience. So, yes, I have no objections to being friends. By the way, I'm turning 50 next month (12/21), how old are you, and where do you live? I'm also on FBook. Not quite sure how you exchange info privately? hmmmm. And I certainly don't think it's all in my head...I'm saying...we'll hear it...and to a certain degree, it's true though (not psychologically speaking)..but due to the brain (in your head) not signaling the nerves to stop firing. HAHA.

One last thing: How do I reply without attaching your reply (thread) to mine! Takes up too much space!

Originally Posted by lorigood243

Thank you Cindi

Some days as you know are better than others. Since I have been on the Fentanyl Patch and a very small dose of Methadone...like 10mgrs a day..I am SO sleepy all the time. I cant stay awake unless i take the caffeine i will try to find something else. The B12 never helped me. I wish for just one day that i didnt have to think about this illness. Just one day for my mind to rest and have peace. When i go to to church and hear the music and sing, it fills me up and i dont think about RSD...other wise i have to calculate my physical movements, what i am going to eat and when. Just too much planning and thinking. I have to make sure i dont take pain meds before i go out to drive and that i have taken enough caffeine that i will stay awake to drive.

I am sure everyone else goes through this at one level or another. Im just tired of it.
I have to count my blessings of all the things i can still do and try not to think about the struggle of it all.
Lori