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

Lori,
Thanks for writing this thread.
I've had RSD since '83. Not diagnoses for 7 years.

But,
I've got to say, like the old saying we are what we eat, sometimes, we are the side effects of what we take.

I for one, HATE any pill I must ingest.
I take methadone for pain, the only side effect I notice, is constipation, if I don't get enough exercise.
I take Cymbalta, anti depressant, and some pain relief for nerves. (not much though).

Valium, to reduce the reaction to pain.

Imetrex for migraine.

Zanaflex, if I really hurt myself, and, occasionally to help sleep.

CPap, which is a total PIA!
(With O2)

I do keep Tums around, along with the anti diarrheal. (forget the name).

And, Lidocaine patches, for four herniated discs, two neck, two lowback, and my arms, hands. (TOS)

I've been tossed and crushed in two MVA, one involving a T-Bone by a Semi with trailer, and another where I was front seat passenger, and another driver blew a stop sign.
bam, head injury!

I'm a total mess, and sometimes, don't feel so lucky to be alive. But. of you're one of faith, as I am, ,I feel that I still have work to do here.
And, I'm trying!

It's difficult.

I must say, that I try to take the least amount of meds necessary, and that does not always work to my advantage (depending on what you think an 'advantage' is).

So You see, that you've kind of 'nailed' a universal question.
Is it me? The RSD? (Other injury), And what are the meds Side effects?

WE ALL ask ourselves these questions.

For most, it's much better to take the lowest dose acceptable regularly for our illness and pain, as opposed to prn. (as needed). Because usually prn, is too late.
Then the side effects spike.

I suggest that you work with your doctor, to get on a 'minimum' regular dose.
Then, have an acceptable amount available for 'breakthrough' issues of pain, or otherwise.

I've been doing this for 20 years + now.

I hope you can figure out which meds cause you side effects, that cause you to take another med, that might not be necessary.
This is key, to some sort of sanity with this disease.

I wish you ALL the Best!

Pete
asb

Thank you Pete

this is going to sound crazy but you reminded me of something. i have a herniated L4 disc i forgot to list..but i had 3 car wrecks in 3 years all having to do with back injury. and my first abdominal surgery was for a C- Sec for my twin girls. I immediatly got Fibromyalgia after they were born...that took 3 years to diagnose. After suffering 10 years with it, i had a truly miraculous pray healing and was symptom and pain free for 5 years! Since you said you were a person of faith, i thought i would share. I had one of those instant healings that you just cant believe happen, but it did. Wish it would happen again soon.

You are here to do more good Pete, we all must hold on to that. My girls worry that I am going to die early, Im only 48 and have been ill for 5 years. Even if it is just to be here to comfort them and give them life advise, thats a great reason to be here. I am truly sorry for all you are suffering with and what everyone suffers with here. I hope we find a reason one day for it all.
Lori

Curious on just how you are ascertaining if these are related to RSD, or if you are collecting general symptoms for anyone with RSD/CRPS? Because the docs went for the change in name to Complex Regional Pain Syndrome due to the complexity of the disease, the symptoms are just as varied from patient to patient, notwithstanding the commonality of: allydonia; parathesis; depression, insomnia, and most important of all....the PAIN after a trauma of some sort that the brain keeps the nerve endings firing away like a machine gun.

Now, admittedly, the complications from symptoms leave to the gray area...did the chicken come before the egg or vice versa? This is why I'm asking. If we can find some other common symptoms among us, then what you are doing is a badly needed. If, on the other hand, it is just a way for us to collectively see just how ridiculously long the list of symptoms us RSD patient suffer from, then I don't see how that would be productive or positive.

I wonder which way I would rather have my treating pain doc tell me about possible side effects most likely to occur, or future symptoms if I was at the beginning stages of RSD (which I am far from '98). I still wrestle with this on a day-to-day, & appointment-to-appt. basis. On one hand, if he doesn't tell me about any of it, and it does come to fruition, then I'm am surprised, if not shocked, and may not be prepared to deal with something else instead of if he would have told me about some sort of side effect, or the fact that my RSD could spread to some other body part. On the flip side, if he did, then I would wonder if my symptoms were psychosomatic (all in my head) because I knew in advance it was possible. Interesting. I guess in the end, you have to know yourself, and truthfully answer what would be best for you (or your family member if a minor).

I am a person who usually tries to see the positive (especially since my diagnosis). I've been described by my doctors "you're one of my patients in the worst pain, with a horrible incurable disease, but with the best attitude I've ever seen." Like I said, I "USUALLY" am. With RSD, I have my bad days where I can't quite see the positive in sight those days; I'm human. But I've also been called the "1%'er" because if there are 100 patients (despite condition, disease or illness) I'll be the 1 person with complications, or some weird and wild thing to happen to them. LOL. I've grown to love the nickname, instead of thinking I'm some freak now.

I know, you're thinking, who the heck is this person? I'm brand new. Power is knowledge and all that stuff. Found RSDSA's FB page, and kept searching. I used to lead a regional support group; downloaded every bit of info I could from the internet for those meetings; invited speakers to attend (even lawyers to explain BWC and/or disability). and all around general support. I found that once they had the knowledge, and unfortunately, once they saw the possibility that it COULD spread systemically like it did for me (10% actually) attendance died down next to nothing. Sent out postcard surveys complete with postage for ideas: "everything great..wouldn't change a thing. Just didn't feel need to come any more." I think since RSD isn't curable (yet), then support will always be necessary.

I am extremely grateful for the online sites! Just want people to be careful on what they ask for sometimes, because it can be detrimental. However, that being said, I have had some weird allowances added to my claim: DVT (blood clots from being immobile-flow thru); sprain/strain left medial cartilage knee (flow thru); both of which are now in the stage of being added to my PTD because they were both allowed after my PTD was approved. Bottom line, my attorney said he's gonna get me more money (he always gets 1/3 so not surprised he contacted me out of the blue for this). Just an FYI for any of you on PTD that have any other claim allowances added since.

Additionally, attorney is working on adding "urinary retention/neurogenic bladder" (after pain pump placement with morphine made it impossible for me to urinate); and most recently (last week) my doctor has dx me with "thoracic facet joint disease" that he told BWC is directly related to my RSD (again, both are flow-thru...I got this problem because I already have RSD). Hope this helps.

I am in need of assistance to see if anyone has had thoracic facet joint injections/blocks done before? Asking because all other blocks (including RFA's) left me numb for about 12 hours or more, and this one did not at all. I am having some pain relief now, 6 down from 10+ Thurs a.m, and have no idea how long these last. Docs have also added clonidine to morphine pump, plus oral keppra (1500 mg/day) with no relief. How long do these blocks last?

Thank you for reading this lengthy posting. Please understand that I mean no disrepect, just am cautious individual who knows everyone is different. I hope to get to know you all better. Thanks for your time.

Thank you for replying to my post. You put alot of thought into your response. First let me welcome you here and say that there is alot of knowledge to be had form the members that have suffered with this for many many years. I only was diagnosed 4 months ago and i search every day to try to learn what my body is doing and how i can live a more fulfilled life. I am bed ridden mostly and have been for 5 years. My RSD came from 3 abdominal surgeries, that last one nearly killed me. So many of the symptoms i have came after the 3rd surgery. I have way more questions than i have answers. I am truly sorry that this disease has happened to you.

Dont let anyone tell you that your symptoms are in your head. this is all real! it is complicated and even doctors dont fully understand what is happening to us or how to help. please post often and other members can help you greatly. I hope to learn from you as i have learned from others.
Can we be friends?
Lori

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!

Welcome to NeuroTalk.

If you click the Reply button at the lower left of the page under the last post, there will be no quote attached. The Quote function attaches, the post from which you clicked it.

Hope this helps.

Thank you so very much Mrs. D.

shows I'm a member...but of no groups. I sat and wrote this nice reply in the SCS/pain pump group (had both, have pump again), and it says I don't belong to any groups yet; and I tried to make sure that nice long post actually posted, but now I don't know...says I only have 2 postings today. Can't figure out how to add myself to a group I guess. Thought when I posted, I would be auto added?

groups are extra and outside the main forum.

You can post anywhere you want to.

If you take too long to post, you may be timed out. To prevent this you check the little box next to your username field when you log on.... it says, "remember me"...then you have all the time you need to make longer posts.

All new members are moderated and watched by a moderator to assure you are not here to promote spam. So there may be a short delay until your first posts show up. This period passes quickly however. So please be patient, and try not to duplicate your posts at first.

p.s. I just approved your post at SCS forums!