Finally Introducing Myself!!

[Guest guest]

Dear Fellow RSD Friends,

Hi! My name is a, and I joined the group about 2 weeks ago, but have been too sick to sit here and write an e-mail, but I have been able to read all the ones you send to the group. I am 48 years old, and have had Stage 3 RSD for about 2 years now...and I have been thru just about EVERYTHING! I am also married and have 3 kids, but am an "empty-nester," thank God!!

My heart goes out to everyone here...we are all suffering WAY too much! I read where one of you mentioned "the burning" - and YESSS! I have that horrible symptom to a large degree, and I think it is one of the WORST symptoms because there is not much that helps it. I have spent MANY a night sitting on the couch with my arms and legs in a large trashcan of cold water trying to "put out the fire." Those are also the times that I get weak and ask God to just let me die...it is so unbearable. Sometimes the trashcan and cold water work, and sometimes not, but if you are desperate, it is worth a try.

Anyway...I have full body RSD along with cardiac involvement and have to take cardiac meds to control the rhythm of my heart - I get alot of arrythmias that are SCARY, let me tell you! I also have herniated discs in my lower back, thoracic spine and collapsed discs in the cervical area underneath where I had surgery back in 1982. Also have 2 knees that need replaced, but no one will touch an RSD patient!

One of the things that frustrates me the WORST is the inability to get a COMPASSIONATE M.D. who is willing to help with the pain. I really don't know what they expect us all to do??? I was going to a neuro/RSD doctor here in Vero Beach, FL - but got no relief or help and I didn't really feel like I was being listened to. They just herd you in like a cow for your "injections" and I was having to try and talk to the doc while he was injecting me all over...and, naturally, I didn't get any answer above an "hmm-hmm." Also, the injections didn't help...have had so many, I think I have scar tissue from them.

Anyway...I was a nurse prior to getting this demon of a disease...and I just refused to be treated that way by the doctor any longer...so went back to my family doc who has tried to help, but things are so bad, he is trying to get me set up at The Mayo Clinic in ville. I understand that it is very hard to get in their Neuro division...so I am just keeping my fingers crossed and praying, because I feel like this is my last hope...I am really getting depressed, in spite of taking Sinequan for depression.

I have to use a walker to get around, and REALLY need a wheelchair, because walking seems to cause me the worse trouble later...the back is killing me, both knees, hips....plus that horrendous burning! I even get my EARS burning if I sleep on them, can you believe that??? And, lately, my abdominal organs feel like they have hot liquid all around them...God only knows what kind of damage is being done...don't even want to think about it, LOL!!

Anyway, I wanted to introduce myself to you "officially" - and if any of you have any questions about your symptoms or meds, I can probably answer, because I have taken every medication and have had just about everything happen to me! I read where one of you (sorry, forgot your name, honey!) was having bleeding with Neurontin...I had the same problem, bleeding from gastritis and elevated liver enzymes, plus bleeding under my skin, especially my arms where I bumped something lightly, like just doing the dishes. I have taken just about all of the anti-epileptics, and had trouble with ALL of them, except for Klonopin, which I am taking now. It DOES help the burning some, if I make sure to take it WITHOUT FAIL, and even after the burning starts, I will take a couple of extra (per doctor's okay) and it slows the burning down SOME.

What I wonder is: WHERE did this hideous disease come from?? I was a CCU & ICU nurse for many years, and NEVER saw patients with any of these symptoms...and then it just seems that suddenly adults and even poor little children are coming down with this stuff every day! It makes me suspect something either environmental or maybe even viral...I just know that everyday I hear of someone else who has come down with it - even without any injury.

I DO have a favor to ask!! If any of you know of a pain center or a GOOD RSD doctor that you have had good experience with, would you mind to let me know about them?? Like I said, I think I am "on my last legs" here and am DESPERATE and am looking everywhere for help. My family doc was giving me some pain medication because he doesn't believe that RSD patients should have such poor life quality due to suffering to the point they are bedridden (like me, most of the time) due to the pain - but since the Rush Limbaugh situation, the authorities here in Fla. are on a witch hunt for any doc that prescribes pain meds. My doctor was giving me Duragesic patches (fentanyl) - but now he says it is so bad with the DEA and state authorities that he and many of the docs he knows are terrified to even prescribe for cancer patients - that is how strict things have gotten...and we ALL know what the general opinion is out there regarding RSD...those of us who have it get very little respect OR compassion. Things are really crazy, because Fla. just passed "The Patient's Pain Bill of Rights" - which we thought was a God-send - but on the other hand, the authorities won't let doctors use it! It is like the right hand does not know what the left hand is doing...and I don't think that RSD patients, and including cancer patients, should have to suffer because of the unscrupulous acts of a few who do not abide by the laws or their doctors' orders. Lord...forgive me for the "soapbox" - but it wasn't long ago I watched my poor Mother die with pancreatic cancer and NO PAIN MEDS unless I took her to the ER and pitched a fit!!

Anyway...so sorry for the longggg "intro" - e-mails will be MUCH shorter in the future, I promise, LOL!!!

I am happy to help any of you that I can and my heart is with you all, and you are all in my prayers. If YOU have any suggestions for ME - would be VERY grateful for them, too - cause right now, I feel like I am really going down the tubes FAST and hubby is scared to death.

Blessings to You All!!

a

thumpergal@...