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Hi there,
My name is Thor & I live in North-Central Massachusetts with the love of my life; Kevin. We've been together for 11 years now, & I {stumbled} on this site & instantly found that I had information that nobody offered me before! I thought I'd introduce myself so that--if Thor happens to say anything that is confusing via a Thread/Reply or Chat--I can have somewhere to say, my story is here! My highlights could easily fill volumes, but I've condensed it to the best of my ability.

I have been experiencing stabbing pain in my Left knee which recently descended into a whole collection of effects, worsening pain--though always "Through the roof" agonizing. With the pain, my major-depression has spiraled out of control, seemingly affecting a large portion of my capability to understand & form coherent sentences the way I once could, particularly with my Angel, which is more painful & confusing, then the physical pain that killing me more than the physical pain! For background, I've now been battling HIV-related major-depression--which {WAS} under control before THIS physical pain. Now, however, that is overwhelming that control.

The orthopedic surgeon that we were referred to thru BWH in Boston explained that I likely have RSDS as opposed to anything related to the joint/bone. It is always worse with movement, though it DOES hurt all of the time, in spite of unheard of amounts of the last available narcotic that I know of, after having either been allergic or maxed out on dosages. To help alleviate some of the exuding depression/angst/couples issues, we're both seeing a therapist & we share a couple's therapist as well. In spite of this intervention----seems like I'm dying from the disassociation of the pain & how it's affecting even the simple pleasures, eating, drinking, talking to friends has all become difficult as hell. I think, if the pain can, somehow, be dulled; we both believe that--along with an increase in one of my anti-depressants will help!

I wonder if this type of disorder is really common in avascular necrosis scenarios, & am I alone w/ this "un-viewable" feeling & is the pain ever going to be manageable? {those are a couple of questions I have!} But, MOST IMPORTANT TO US {are] OPTIONS.

Yours,
Thor {For us both too!}

Thor,
Welcome to the forum. Feel free to look around, ask questions, rant or vent. We are all here and have experienced the pain of RSD. There are many treatment options, medicine options and alternative options to try alleviate part or all of the pain.

Some of us are at different stages with our disease, but with each others support we all have been encouraged.

For you are God's beloved in this regardless of the seemingly overwhelming pain. I write not because I experience exactly what you know, but because my sister-in-law Terri suffers from the Long Lasting effects of RSD, diagnosed over a decade past, and the gangrenous effects such a disease brought to her through what has become the ever increasingly popular scoping of a knee injured in her work as a chef. Wondrous cook she remains, although chef no more.

Her legs were long ago removed at a point barely below the hips, availing of a slight platform by which to sit in her motorized wheelchairs [for there have been several over the years as they wear out]. Her Doc long ago gave over to the notion of providing her paliative care as agony in unrelenting pain, both bodily and phantom sought to erase her existence to a bed ridden imprisoned soul. Not to be dissuaded from life, she takes now dosages of Morphine which, by titration up over a LONG LONG time, have seen her pass the line of a dosage known to be fatal among other humans. Doc remarks with incredulity at her indomitable spirit..... and when I was visiting two weekend past, she motored up in that small town to the tiny church to hear me sing for worship. It was precious to know, she in pain, would share such moments with all of us. An appreciation plaque mounted there for her reads "Terri, long our inspiration."

Unwilling has she been to give up, painting t-shirts for oncology patients in a nearby hospital. Pain filled? Definitely. Seemingly wasting away? Yup at less than 90 lbs now. Nevertheless, she gives God glory in all she is able to share with her spouse, her family, her community, her love of God.

She inspires me.
Grateful, and welcoming you to this special place,
Mark56

On March 1, 2012 my husband received a tetanus vaccine. He had pain and initial redness, a bit of swelling for about 2 weeks. He then had a blood draw from the same arm 3 weeks after the tetanus and he experienced horrible pain at the draw site that then went up and down the arm. Two weeks after the blood his arm would turn a violent color of red/purple (like a BP cuff had been squeezed too tightly and left on) with white blotches. The pain was so terrible that he ended up in the urgent clinic where they thought he had a blood clot and sent him to the ER. The ER diagnosed him with ascending lymphadenitis. The next day he saw our PCP who diagnosed him with neuropathic pain syndrome. For the next month his arm would turn this horrid color and the pain would literally bring him to his knees. We were sent to a neurologist who performed an EMG on his arm and this was normal. Now for the past month/month and a half the horrible pain has subsided, the color has returned to normal, but now he has pain and numbness in both arms and muscle twitching/fasiculations in his legs along with numbness/tingling around his neck, jaw and mouth. He has substancial weakness in the original injection/blood draw arm with a bit of atrophy. He says it feels as if his arms are wasting away. He had MRI of his head (to look for MS) and his neck (looking for pinched nerve) last week and both were normal. Prior to March 1 my husband was an avoid outdoors man...hunt, fish, canoe, kayak, hike. Now he is sleeping 12 hours a day just so he can go to work to continue to provide for his family. We are going to see a neuromuscular rehab pain specialist in 3 days and hoping for a diagnosis more specific than 'neuropathic pain syndrome' and hoping that something can be done to stop the weakness, numbness, tingling, creepy crawling feelings in his arms. He does notice that if he lays his arm on a cold surface (metal computer table at work) or cold water, his left arm goes crazy with humming, tingling feelings. Just here for support and some ideas of what this might be. The more I read about multifocal motor neuropathy (esp. with the reaction to cold) I'm thinking perhaps this is it. I have been directed to this forum for advice. Thanks for listening. Linda from Michigan.

I realize this may seem trite, but the horrific turn this has taken surely seems to call out for the best of the best rather than being bounced from one to the next each with different, and apparently not relevant DX which do not lead to care. Seeing the neuromuscular rehab pain specialist sounds as though a good walk in a more positive direction for answers. My pain specialist is every bit my go to person for the issues which plague me.

Frankly, the thought which came to my head first when I read your developing nightmare was either Mayo Clinic or Johns Hopkins. Why think in terms of turning in such a direction? Simple, the clear development from a simple innoculation has been horrific results which escape answer to this point. When my cousin had four children, each of which turned out to be affected with Autistic Disorder, she being a hospital floor nurse made a bee line to Johns Hopkins. When my sister in law was first diagnosed with RSD after a purportedly "simple" [there is no simple about any surgery] knee scope surgery, and the ultimate impact was gangrenous limbs heading toward amputation, Mayo Clinic was given the big consideration.

Your husband's situation seems the more difficult of the hard cases determining what to do..... but given the direction in which the neuromuscular rehab pain specialist directs you, questions whether there is some special clinical diagnostic program anywhere which may prove to be answer driven and detail responsive may be more in the direction of patient advocacy your husband needs. In fact the specialist whom you see may well be former clinically trained in such a program..... ask. Get answers, deeper answers than "here is a script for a procedure."

Prayin,
Mark56

Name is kristina im 24, here is my strange but true story.

I was a cake decorator at Vons. While i was making butter cream i was pushing the solid 50lb block of icing into the bucket of a commercial mixer " meaning its big" and it only fits in the bucket if the paddle that mixes it is positioned a certain way. Ive done this many times before i manually moved the paddle and i crushed my left hand between the paddle and the bowl keep in mind the space is less than an inch wide. it sounded like every bone in my hand was broken. I was in shock i had to collect my self and move the paddle back off of my hand. i took it out and it was bleeding from my palm and the top of my hand. i ran to the front of the store and quietly told the first co worker i seen that i had hurt my self bad. as she ran to the phone to page a manager i started crying i couldnt believe what had just happend. i had done it so many times before and did not get hurt. i got taken to some urgent care center they said i was FINE. i went back to work a few days later. i went back to the dr my self and told him somethings wrong my hand feels really weird. he gave me light duty. three months later my hand turns purple and i tell my manager that this isnt right im going to see the dr again. he sends me to a hand specialist. he gives me PT and accupuncture and then doesnt see me for months. i request a new dr. she tells me THERE IS NOTHING WRONG WITH YOU. she gives me a cortazone shot in my ring finger and gives me PT also. the PT is so intense i cant take it. the PT notices that i had been complaining about my shoulder hurting and it being hot all the time. like its on fire. she tells me that i need to make it clear to the Dr that it is my shoulder now that is hurting. so i go to the dr and tell her look im not *edit* crazy im young and i want to work but there is seriously something wrong. i told her my fore arm my upper arm and my shoulder up to my neck feel like they are burning. she tells me its because i hold my arm close to my body and that i need to use it more...and releases me back to work. i was so ****** off when she turned around and told me well if your going to get mad ill change it to light duty instead of full duty...why would she say that? anyway i go back to work after 8 months of being out. i start my cakes i do 80 of them " thats normal work for a Cake decorator" and i do my normal stuff. im off the next day... talk about pain i couldnt get out of bed i wanted to go to the ER i was in intense pain. i go to work the next day i life one tray of cakes and i start to cry. my manager noticed that i was struggling and asked me to leave that it wasnt safe. so i requested a QME appointment. the dr says that i have symptoms of CRPS so he sends me to a specialist. they do x-days of my arm neck and back. he said that im not crazy and that he agrees with the QME dr that they need to look into that. So last week after a year and a half of thinking im crazy i get diagnosed with CRPS type2 and its getting worse. i havent started pain management yet i have an appointment on the 24th and im nervous. i missed my last one due to anxiety. im depressed and just so lost. im taking tremadol and i cant sleep. my mother actually committed suicide when i was 15 she sufferd from fybromialgia for 6 years and couldnt take anymore. this reminds me of all that i witnessed when i was a teen. she was on so many meds shed sleep all the time. and i dont wana be like that. im freakin out my gf and its starting to freak me out.



kristina

Kristina,

Welcome to the group. First off, you are not crazy. Unfortunately, like so many we end up with dr.'s who don't know what rsd is or the fact that we are not faking.
going to the pm will be (hopefully) a good experience as long as he has experience in rsd. You will be able to get on the proper medications and start different procedures to help with the pain.
I am sorry to hear about your mom, that must be rough. Make sure you get on an antidepressent as well as pain meds and you will definetley see a difference. Just remember, there are many meds out there so if 1 or 2 don't work don't get frustrated. Be honest and truthful with your dr. and they can make adjustments to help you. Good luck and welcome.

A little bit about me.

My name is Candice, i am 21 , and I was working as a 911 dispatcher, I am no longer able to work. Fortunately, I have a wonderful family that had been really supportive and loving through everything.

I was Diagnosed June 26,2012, after months of being in pain and not understanding, and being passed doctor to doctor. My rsd/crps is in my right hand.

I dont have a lot of people who know what this is, or what it has done and is doing to me. I am so lost in this.. I have some many questions, and no answers

welcome Candice to the group. You will find your answers here in this wonderful bunch of people. I am sorry about hearing you have rsd, but glad to meet you.

Pamela 36 Diognosed June 27,2012.... Im blessed with hope today. First SGB in a week and half and wondered if anyone has experienced relief from the block?