Re: Digest Number 2612

[Guest guest]

Hi everyone! My name is Janet, Nannyshere@.... I joined this group a few years ago but after changing from AOL, didn't get the digests. I recently found it and for the past 2 months have been trying to read ALL posts so I could catch up and start posting! LOL SOOOOO MANY!! But, here I am and have reached the final post! I would like to welcome all new to group and send out gentle hugs to ALL! I have had RSD for 4 years. I fell down stairs and shattered left leg in 7 places and broke my ankle. OMG, don't even want to remember that night!! Ouch!!! I had 2 plates and 8 screws in for 1 1/2 years and they started protruding through my skin. I had them out and I have not had a day without pain, BURNING foot and leg, and other body reactions! I may have had RSD before that fall as I lost my 31 year old son in 1996 and immediately started with my annual falls and mishaps. Grief. Wrose thing in life to happen is losing a child. I had a back injury in 1990 and now have 3 ruptured discs, a protruding disc in neck, have had complete rotor cuff repair, breast surgery, knee surgery, and of course my memory is very bad. I have done PT, without success, go to GP, get MRIs, EMGs, bla bla bla. I went to a Pain Management Dr. 2 years ago and tried nerotin, but seemed not to work. Had to stop taken it as I do not have prescription coverage. I am now on Medicare disability as is my hubby and do not qualify for Medicaid because we make $120 a month too much from SSD. Gov. is very good with figuring that one out! I should be on many meds for all my conditions but can not get them. (sorry for this novel, but want to get all this out of way). I know many of you are in the same boat and my heart goes out to you all. I live in Levittown, PA. My sciatic nerve went out last year and pain doc was going to do blocks but I canceled when that horrible pain went away. I am scared to death of needles in my back as I have had too many experiences with them. Seems they hit a nerve and it fells like I was hit over the back with a sledge hammer! Sorry, but I do know that most everyone I have talked to about that, never had that feeling. Lucky me! So, baby I am. As most of you, friends and family don't understand this horrible disease I have, so I just pretend what they think is wrong, being I have a little back ache!!!! They should live one day as we do and see the truth. But, not to be. My GP is great. The meds I am on now are: 750mg Vicaden 2 times a day, 2 clonizapen at bedtime, (can't sleep on my own), Zoloft 150mg for depression, (need 300mg but can't afford it) Nexium for erosive esophagus, (spelling is bad today lol) smoke too much, cholesterol med, and just got done having all kinds of test on stomach to find out why I have constant pain under breast bone in middle. Gastroligist says to stop smoking. Have another endeo test next week. What I am getting at is I need to ask this group what I should be having done for my pain. I can't hardly bare this burning pain in foot and leg. debilating back pain. I do wear Lioderm patches on the site of operation and that does help most of the time. My whole body feels like I was hit by a max truck all the time. Doctors seem to want to treat all pain seperately. I was interested in learning about the Katimine sp? treatment as I live by Dr. Swartzmen. But have heard it takes over a year to get an appointment with him. Nor do I know if Medicare covers it. Probably not! I too contemplate suicide but would never because of my 2 remaining sons and 7 grandchildren. I hate not being able to do much and just lost my 2 best friends of 34 years in the last 4 months. We just all seem to get one thing after another, don't we? But I do not ask "why me" because "why not me." I would like to ask the group for any info on what I should be doing. ((((((group)))))))) gentle hugs. I know most of you from your posts and can jump in at anytime with support and love and caring. I am so use of not getting it from around here that I wouldn't know how to act if I got it! LOL I am a silent pain bearer, ( not by this post though!!! LOL). But I do know that you all know what I mean. I will keep reading all the posts and my prayers are with all my fellow RSDers. God Bless , Janet, waiting for the CURE.

Digest Number 2612

[Guest guest]

Hi Janet!

Im so glad to meet you. Welcome back to the boards. It sounds like

you have had more than your fair share of pain and misery in your

life. Im sorry to hear that!

I'm rather new to the group, 4 months I think as I was unofficially

diagnosed in May. I sprained my wrist 1 yr ago today at work. I have

had the whole barrage of Dr workups and been the lucky recipient of

multiple injections both cortisone and stellate ganglion. Im on a

bunch of meds and question their ability to make me feel better every

day but I take them as I dont think I want to know how I'd feel with

out them. I'm currently awaiting a visit to yet another dr, this one

a neurologist in Boston to evaluate whether Im worthy of an SCS

implant as I failed the injections and cant have anymore for awhile

and they didnt really work anyway. I've been battling my employer and

insurance company about their denying me not only the implant but the

stress counseling as well, BUT they will approve all the

antidepressants I could ask for..go figure LOL

anyway, thats my story in a nutshell...Glad to meet you Janet and

welcome back

Many gentle hugs

Donna

[Guest guest]

Dear Janet: Hi! My name is Janet Underwood, I live in Southern Illinois. I just read your posts and gosh can I relate with you, on alot of things! I was hurt on my job at work, I crushed the femoral cutaneous nerve. It's in the area where your pants crease when you sit. At the time, the doctors were stunned that this had happen to me. I worked at a car factory, and worked on bumpers for the cars. Which they were very heavy at times, and had to throw these up and over my head. I was a Loader on the assembly line. Any way, it was my left leg, I went through so many nerve blocks to kill the burning pain. I can't tell you how bad those shots hurt when they had to go inside the nerve itself. I almost passed out from when they were given to me. My pain doctor at the time used to give me my nerve blocks. Well they worked on me with those shots alot. I had alot of steriods in my leg, which in turn ruined the muscles of my leg. I had too many blocks given at the time.

They worked on me for 17 months and 3 days. After that, I had to have the nerve cut, it was the worst surgery I have ever had. I will NEVER forget the horrible pain I had after I woke up from surgery. They not only cut my nerves but also the muscles at the same time. I had so much tissue damage from the surgery and shots. I went through total hell for along time, and still am. I have now RSD and have had it since 1998, injured the nerve in 1996, lost my father 6 months later to cancer. I was devastated, as I was not able to say goodbye. I was down on my back when he got so bad. I don't think I will ever forgive myself for this.I know it was not my fault that I got hurt. But to see my dad that last time would have given me so much. I also lost my brother at 30 years old in 1991, I was very close to all my family members. Now that I have RSD and now Fibromyalgia, my life will never be the same. I have lost all of my friends, I am so glad that I joined this group. This is my life saver

at night, I don't sleep anymore. I do good if I get 3 to 4 hours a sleep a night. I have so much BURNING PAIN in my left leg, it turns blue and purple all the time. If I sit for too long, it cuts the circulation off my leg. My RSD went straight to my right leg also, and it has never been hurt. I think because of the damage I had in my left leg that caused it to go there. It was the mirror image, I guess that it what they call it. I take Methadone 200mgs daily, and Loracet 10/325mg 3 times daily also for pain. I take nothing for the burning pain. I know what you mean about the burning pain, I have had this feeling since 1996. the burning pain is driving me crazy also. I have two kids one is 14 and 22. I just found out I going to be a grandma, and I am scared I won't be able to have fun with my grandkid. It is not fair, I have waited along time for this. This has ruined my life also. My doctor want me to stop smoking also, but that is alittle hard right now. I am a nervous wreck. I am

really glad that I wrote to you Janet, it's nice having someone to talk to. Thanks JanetJanet Meskers wrote:

Hi everyone! My name is Janet, Nannyshere@.... I joined this group a few years ago but after changing from AOL, didn't get the digests. I recently found it and for the past 2 months have been trying to read ALL posts so I could catch up and start posting! LOL SOOOOO MANY!! But, here I am and have reached the final post! I would like to welcome all new to group and send out gentle hugs to ALL! I have had RSD for 4 years. I fell down stairs and shattered left leg in 7 places and broke my ankle. OMG, don't even want to remember that night!! Ouch!!! I had 2 plates and 8 screws in for 1 1/2 years and they started protruding through my skin. I had them out and I have not had a day without pain, BURNING foot and leg, and other body reactions! I may have had RSD before that fall as I lost my 31 year old son in 1996 and immediately started with my annual falls and mishaps.

Grief. Wrose thing in life to happen is losing a child. I had a back injury in 1990 and now have 3 ruptured discs, a protruding disc in neck, have had complete rotor cuff repair, breast surgery, knee surgery, and of course my memory is very bad. I have done PT, without success, go to GP, get MRIs, EMGs, bla bla bla. I went to a Pain Management Dr. 2 years ago and tried nerotin, but seemed not to work. Had to stop taken it as I do not have prescription coverage. I am now on Medicare disability as is my hubby and do not qualify for Medicaid because we make $120 a month too much from SSD. Gov. is very good with figuring that one out! I should be on many meds for all my conditions but can not get them. (sorry for this novel, but want to get all this out of way). I know many of you are in the same boat and my heart goes out to you all. I live in Levittown, PA. My sciatic nerve went out last year and pain doc was going to do blocks but I canceled when that horrible pain went

away. I am scared to death of needles in my back as I have had too many experiences with them. Seems they hit a nerve and it fells like I was hit over the back with a sledge hammer! Sorry, but I do know that most everyone I have talked to about that, never had that feeling. Lucky me! So, baby I am. As most of you, friends and family don't understand this horrible disease I have, so I just pretend what they think is wrong, being I have a little back ache!!!! They should live one day as we do and see the truth. But, not to be. My GP is great. The meds I am on now are: 750mg Vicaden 2 times a day, 2 clonizapen at bedtime, (can't sleep on my own), Zoloft 150mg for depression, (need 300mg but can't afford it) Nexium for erosive esophagus, (spelling is bad today lol) smoke too much, cholesterol med, and just got done having all kinds of test on stomach to find out why I have constant pain under breast bone in middle. Gastroligist says to stop smoking. Have another endeo test

next week. What I am getting at is I need to ask this group what I should be having done for my pain. I can't hardly bare this burning pain in foot and leg. debilating back pain. I do wear Lioderm patches on the site of operation and that does help most of the time. My whole body feels like I was hit by a max truck all the time. Doctors seem to want to treat all pain seperately. I was interested in learning about the Katimine sp? treatment as I live by Dr. Swartzmen. But have heard it takes over a year to get an appointment with him. Nor do I know if Medicare covers it. Probably not! I too contemplate suicide but would never because of my 2 remaining sons and 7 grandchildren. I hate not being able to do much and just lost my 2 best friends of 34 years in the last 4 months. We just all seem to get one thing after another, don't we? But I do not ask "why me" because "why not me." I would like to ask the group for any info on what I should be doing. ((((((group)))))))) gentle

hugs. I know most of you from your posts and can jump in at anytime with support and love and caring. I am so use of not getting it from around here that I wouldn't know how to act if I got it! LOL I am a silent pain bearer, ( not by this post though!!! LOL). But I do know that you all know what I mean. I will keep reading all the posts and my prayers are with all my fellow RSDers. God Bless , Janet, waiting for the CURE.

Digest Number 2612

[Guest guest]

HOPEFULLY I WON'T GET CONFUSED WITH THE 2 JANET'S, BUT THE 1 WHO HAD

THE NERVE BLOCK HAVE YOU CHECKED ON THE SCS TO SEE IF IT WOULD BE OF

ANY HELP TO YOU AT THIS TIME. I HAVE 1 AND HAVE HAD SINCE 1999 & IT

TRULY HELPS IN EVERY AREA BUT MY CHEST. HE SAID THAT IT COULD BE

PROGRAMMED TO GO INTO THAT AREA, BUT IT WOULD BE A TRADE OFF BY

LOSING IT IN ANOTHER AREA. DESPITE THIS FACT I WOULDN'T TRADE IT FOR

THE WORLD. THE OTHER JANET YOU MENTIONED PAIN UNDER THE BREAST BONE

THAT'S WHERE MY RSD HAS SPREAD BUT WE CAUGHT IT WITHIN THE SMALL

WINDOW OF RELIEF & THE BLOCKS NOW WORK IN THAT AREA. I ALSO WOULD

LIKE TO ASK HOW DOES YOUR HUBBY HELP YOU, AS FAR AS UNDERSTANDING

GOES?? I ALSO KNOW WHAT YOUR TALKING ABOUT BEING A LITTLE OVER THE

WIRE WITH GETTING ANY ASSISTANCE. MY EX DIVORCED ME WHEN I GOT SICK

& HAD ME THROWN OUT OF THE HOUSE & I WAS LIVING ON DISABILITY WITH NO

HELP FROM HIM & EVEN ON THAT I MADE TOOOOOO MUCH MONEY TO GET HELP.

IT BECAME A MATTER OF MED'S OR EATING. IF I'M NOT MISTAKEN THE LAST

TIME I CHECKED INTO THE TREATMENT YOUR TALKING ABOUT MEDICARE

WOULDN'T COVER IT. I HAVE BEEN TOTALLY BLESSED WITH A MAN WHO LOVES

ME FOR WHO & WHAT I AM NOW & WE JUST CELEBRATED OUR 1ST YR WEDDING

ANNIVERSARY. HOPEFULLY AS TIME GOES BY I WILL BE ABLE TO SEPARATE THE

NAMES & REMEMBER WHO IS WHERE!!!! GOD BLESS & TAKE CARE BEV FM GA

Barbara

>

> Heck no----I didn't even 'think' of that. I'm so cautious not to

call him to often even though he's said to do it.

>

>

>

>

> In a message dated 9/30/2004 10:24:01 AM Eastern Daylight Time, RSD-

CRPSofAmerica writes:

> BARBARA TORREY <torreyb@p...>

> Subject: Re: Barbara /

>

> Crap. Have ou called your doc to see if he can temporarily bump it

a bit to get you where you need to be so that you can get back on top

of things? Oy. Barbara

>

>

>

>

>

[Guest guest]

But I do know that you all know what I mean. I will keep reading all the posts and my prayers are with all my fellow RSDers. God Bless , Janet, waiting for the CURE

Hi Janet,

I am Lin. I live in Oregon. I am one of the few west coaster in here. I am not sure why that is, except that the disease it not well known among doctors and we have1 doctor here I call him. Doctor O. he is a doctor that if an insurance or w/c needs a doctor to say that there is no such