Hey Robin,

Just wanted to say I am from your side of the pond! I live in SE UK. My gosh, someone within 500 miles of me!! Sorry you have to be here!!

Love

frogga xxxxxxxx

Hi frogga, nice to meet you! Maybe we'll be able to help each other out with UK-specific information from time to time. Not that I know much just now. And I'm sort of hoping I don't have to learn too much!

.... if I should move my intro post to this thread.

When I first joined, I posted my intro thread in the "new members" forum. It never dawned on me that each disease would have it's own intro thread, don't ask me why, lol.... it certainly makes more sense.

As I seem to be spending a lot of my time in here, should I move it or rewrite it here? I have talked with a few people in the chat room who didn't know my story... nor could I find their intros either. I just wanted to know if it would be better or more helpful if my intro is in here.

Hi Rogue, I was advised I could just copy (Ctrl-C) and paste (Ctrl-V) my intro from there to here, and that's what I did.

Hi. I am Lisa and I am new here. I developed RSD in my left leg two years ago and it went away after eight lumbar sympathetic blocks. In September of this year, I began seeing my orthopaedic surgeon who has performed surgery on both of my knees since 2003. I had twisted my right knee in late July and the pain was not going away. I was reluctant to see my ortho as he had previously informed me that eventually I would need total knee replacements. I have been using a crutch (sometimes two) since October. My ortho put me through tests, physical therapy, more tests and steroid injections. In January he referred me to the pain center and suggested I had RSD again. I was floored! I didn't know that RSD could come back and that it could be on a different part of the body. And if he knew, why did wait so long to fill me in? Sure enough, RSD again. This time it is much worse for me. Ten blocks and no break in the cycle. I just had RF ablation on Wednesday and my pain is worse. I have a supportive family (as best as they can be). I feel rotten about what they have to go through because of me. I can't tell them how bad things really are, I don't see how they could handle that when I can't really handle it. My mom is great and is my best friend, so I try to protect her. My husband sometimes suggests that I try to "blow it off" (regarding the pain), so I don't tell him that the pain is so bad that when I am in bed I am begging to fall asleep and that when I wake up, I am severely disappointed because I realize that I have to live another day like this. That is very selfish of me, I know. I feel so two-faced, giving them my fake smiles all of the time and holding back my tears until I am in the shower.

After reading all of your stories, I feel like I am just a big baby for acting and thinking this way, considering what you all have endured. I also have bipolar which for the most part is well-controlled on meds, but sometimes it feels like the depression wants to take over. How do you all do it?

We started the intros on most of the conditions forums first - but as the site grew there were many new members joining that were new to forums and not sure where to post first so we made the Main Intro forum for new members.

You can copy your first post to here, or make a new one, or just put a link to your first intro post, which ever way you like.

Or I can copy/paste it here for you, just send me a PM if you want me to do that.

Hi everyone I have been looking far and wide for a place like your little community here! What a relief to finally find you.

I was injured on the job in Sept 1992, and the insurance company waited until Aug 1993 to finally operate. It was immediately obvious that something had gone horribly wrong. However, due to the usual work comp junk, they refused to admit it. Therefore, my diagnosis was delayed almost a full year.

I chased treatment all over the western U.S., even took part in a gov't trial, all to no avail. The only thing the experts thought might help would be a spinal stimulator implant, but of course I couldn't pay for it on my own.

I am now in my 14th year of RSD... it has spread to encompass both ankles and both knees. Lately I have been getting strange feelings in my wrists and elbows as well, so frankly I am terrified.

I have recently been diagnosed with epilepsy, as well. I am still unsure how that happened, lol! But Dr. suggested the rsd might have caused it.

I also have aids, so I am unable to go out much, for fear of infections from others. All I have wanted these past few years was a way to chat with others who knew what I was going through... and I seem to have found it!

I look forward to been an active member of your community.

hello, my name is jennifer and i was diagnosed with rsd to right shoulder, arm and hand just 4 wks. ago. My initial injury occurred 3 yrs. ago. I got hurt on the job and tore my right rotator cuff. I had surgery 10/04. after surgery i developed a frozen shoulder and needed a second surgery to remove excess scar tissue but because it was a work comp injury it wasn't approved for nearly a year. had second surgery 12/05. after second surgery i never regained strength and was never pain free. complained about it all the time but basically was blown off by docs. finally, about a month ago i had a severe attack of pain. it felt like someone was crushing my arm and holding it in a fire and i noticed mottling to the back of my arm. my doctor took one look at my arm at diagnosed with my rsd. unfortunately, my disability benefits had already ended. soooooo, my ortho doc referred my to pm and i have been paying everything out of pocket until i can get my benefits reinstated. i am currently taking, zanaflex 2mg bid, neurontin 300mg qid, elavil 10mg at bedtime, clonodine patch, lunesta for insomnia, and oxycodone for breakthrough pain. i also take a buttload of vitamins and supplements that i swear help me just as much as meds. i also have a tens unit that i use. i had a stellate ganglion block almost two weeks ago that didn't do a thing except cost me $312! That was one of the most painful things i have ever experienced in my life! anyway, that's my story and unfortunately i have to stick to it hope to hear from any of you soon, jennifer

So nice to meet all of you, I've learned so much already just snooping around in here. I'm Jeanne, formally diagnosed with RSD in both hands Fall 2006.
Hindsight being 20/20 I think this has been going on longer than that.
In the beginning of 2005 started getting alot of pain and weakness in the hands, went through the joys of electrocution and Ortho diagnosed me with Carpal Tunnel Syndrome. He wanted to operate then but it wasn't in my dayplanner for 2005 so I opted trying to put it off as long as possible.
I had injections in both hands to reduce the swelling on my hands (this is where the hindsight comes in) the shots would render me useless for a few days. It felt like they were broken and soooo sensitive to touch. I have also learned since then how to properly communicate with doctors and really express my pain because when I told him they hurt he said some people have more pain than others. I thought it was just part of the process.
I used to have such a high tolerance to pain, had all 4 of my children naturally, never took days off from work...seriously I chopped wood when I was 9 months pregnant
Last summer I just couldn't take it anymore, my hands were turning into the human claw so gave into the surgery. I had carpal tunnel release on both hands, two weeks apart. Did OK for about a month and then the rest is history. What was supposed to be 2 months off from work has turned into Long Term Disability My physical therapist is the one that actually first mentioned RSD to me. Since then I've been to 2 Ortho doctors, 2 neurologists and my PM doctor (who's the best of the bunch).
I started seeing the PM doctor in January of this year and he gave me my first stellate ganglion block at my first appointment with him. He has always been aggressive with his therapy and talked about SCS from the start.
I had 2 blocks withing a few days of each other and absolutely no pain relief. When I had the second block my arms got really mad and fought back, terrible aching pain and ice cold. I was put on blood pressure medicine to help with the temperature and we decided no more blocks.
Febuary it spread to both feet, they had been getting numb for a couple of months but the burning and aching pain literally happened overnight. So I was sent for more tests to make sure we weren't chalking everything up to RSD. That's when I was told Cold RSD and SCS was off my list of options.
I'm very stubborn with this little monster inside of me. I try to take short walks daily and have upped my visits with my therapist, but this is such an isolating illness. The Spoon Story was so simple but so true.
I'm trying really hard to find a way to accept this and fight it at the same time....to have RSD be a part of me without it defining me.
So thank you all for being here and sharing your experience, strength and hope....it helps me more than words could ever explain.
Jeanne

Do you experience any edema, white waxy skin or abnormal hair or nail growth??