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I'd like to introduce myself~
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ctbeth posted:
Hello from Connecticut!
I usually participate in the Web MD Pain Management Community. I have my, "About Me" story published there which I'll copy and paste on this community, too.

I have had seven back surgeries- two fusions (a three-level cervical and two-level lumbar), for the past three years I've had a St Jude's neuromodulator (SCS) that I love. It helps so much, but does not come close to making me pain free.

I've been reading discussions and posts on this community for quite a while, but seldom write.

I thought it would be nice to introduce myself and get involved.

Although I love the other community, there are so many persons whose pathology is so different than mine. I like to hear from other persons with spinal cord injuries. Not that I have anything against the "fibro-folks", (persons with fibromyalgia), but there of late seem to be so many more of them on the community than there are people like I am.

I hope this is a fair assessment.

I am middle aged, live in Connecticut, have four children and a partner named Kevin who has stood by me through tons of crap.

Please be assured that I have nothing against the fibromyalgia patients. I just have little in common with them.

Thanks, Beth
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ctbeth responded:
I just copied and pasted , "My Story" from the other community. Click on my name or icon if you'd like to read it.
 
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bj1208 responded:
hi and welcome to the support group -

it's fine to switch between the boards - we have several people that have fibro and other back problems - we never turn anyone away -

you can click on my name/pic and see my story - i had a single fusion 3 years ago - and have been in worse pain since the surgery and now I have 3 more bulging discs that they are watching - but so far say NO to surgery saying it will only add to my pains -

I had the SCS done 2 years ago - I have nerve damage in both legs - they say it either helps one or the other but not both - and I would have to agree - it took care of the pain in my legs but it made my back pains worse - we tried different frequencies etc and it would increase my back pains almost trifold - so I had it removed (the trial basis) - had all treatments to my back including all the shots u can name/radio frequency nerve ablation/steroid injections/facet joint/piriformis muscle injections - u name it i've had it! LOL

just recently found out that the problems I had with the steroid injections were allergic reactions - other pain doc's never listened - told this pain doc and he said nope won't work on me cause I have allergic reactions - that's great! i've tried the pain shots (anti-inflammatory/numbing agent) and no relief -

my only options now are to either be on the pain meds i'm on (morphine sulfate 60mg 4Xdaily; oxycodone 15mg 6Xdaily; neurontin 3600mg daily) which they say I'm at the limit of what i'm on - or have a pain pump implant - which I'm still kicking that around.

One of the best things I did was to be referred to a PHYSIATRIST Pain Management clinic - here's a link describing what they are

http://www.spineuniverse.com/treatments/what-physiatrist

they go deeper into pain management control than regular pain clinics - if ur not already seeing one you may want to check them out -

well I think i've babbled enough! LOL

let us know if u have specific questions we can help u with - take care - ^Joy^
 
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ctbeth replied to bj1208's response:
Hi again, Joy.
Yup, I've been through almost all of the above. I am very familiar with the specialty of psychiatry; it is a physical medicine specialist. I have one who works with my neurosurgeon.

My SCS also only works on the pain in my legs. The sensations do not go into my lumbar region. I take MSC 60 TID plus morphine IR 15 mg for breakthrough. I was on 90 mg TID and was able to taper down. I have horrible adverse effects and take the least possible of any opiate. Before the SCS my med requirements were far greater and I used Duragesic. I was also taking Methadone for a while. It improved myb pain tremendously, but the side effects were making my life unbearable: sweating (excessive) and extreme fatigue that didn't improve with sleep. It was so bad, especially the sweating, that I didn't want to leave my house and I felt like crap all of the time.

Now I've rambled on and on, haha.

Where do you live?
"Talk" again soon,

CTB
 
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bj1208 replied to ctbeth's response:
hi - I'm outside KC, MO -

I tried methadone, found out I was allergic to it - also tramadol - I don't have prescription insurance upfront -we have to pay full price and then submit for reimbursement - so I have to take generics - that's why I'm on what i'm on - I've found going to small prescription places they give u breaks unlike the bigger chains - so I'm saving $500 a month going to Medicine Shoppe -
only cost me $300 -

I'm also disabled so on SSI - not fun but it's a fact of life now for me -

anyway - just thought I'd drop a note - talk to u later - take care - ^Joy^
 
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ctbeth replied to bj1208's response:
I'm also disabled on SSDI, but I would so love to try to go back to work. My income is Workers Comp, but also have Medicare. I do a little volunteer work with my greyhound who is a therapy dog (and an angel <3). We go to a local nursing home and bring love and a little happiness to some lonely people.

I've been to Missouri. The Midwest is beautiful, but I've always lived near the ocean and cannot imagine being away from it. I've lived in CT, CA, and NH, and RI.

Have you children? I have three sons and one daughter who is my youngest. She does so much for me. I am so lucky that I have her. I mention her a lot and her name is Anneliese....my little angel.

So enjoy the rest of your weekend. Kevin and I are going to watch a scary movie.

Is it still cold there? We're freezing here.

TTYS,

Bet
 
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bj1208 replied to ctbeth's response:
hi Beth - yea I'm covered under my hubby's ins as primary and then Medicare - not bad coverage ....

Yes we are back in the cold again - we had a weeks worth of temps in the 70's and 80's then the "S" word happened - I'm looking outside now and it's gray cold and there is snow coverage on the ground - streets are ok - they were too warm for the snow to stick - and it will be like this all week - snow chances at nite and rain during the day - it was so strange to look outside yesterday evening at 7:30 and see it snow - we've really had some strange weather this year and last year - way too much snow for what our norm is supposed to be -

I had 2 daughters and my hubby has 2 daughters and a son - so between the 2 of us we have 5 grandkids with another on the way next month - my oldest daughter has 2 boys (my only grandkids by blood) are both Autistic - they are 5 and 3 so they are very precious - oldest is just starting to say words - they go to a special school right now and the oldest will start regular school but special ed in the fall - so am proud of them!!

hubby and I rented Case 39 - it was pretty good - couldn't decide between that and Devil - so that one won -

well take care - hope everyone has a pain free or low day! ^Joy^
 
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ctbeth replied to bj1208's response:
Haha,
We watched "Devil". It was stupid- the one with the people trapped in the elevator, right?

Grandchildren? I thought you were a young Mum. May I ask how old you are. If you mind, then don't answer.

As I wrote: I have three sons and one daughter. Kevin had only one son, Jordan, who died tragically this past Sept 4 (2010). He and my daughter were VERY, VERY close and we had high hope for a grandchild that would be both of ours biologically. Yes, it was unusual that a middle-aged couple's son and daughter would be dating. They were just like mini-me and mini Kev.

All of our lives have been devastated by Jordan's untimely passing.

TTYL. I have so much to do and am in so much pain. I wish that I could go back to bed and have a nice, long nap~

CTBeth
 
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bj1208 replied to ctbeth's response:
hi - well I just turned 50 last december - so still young - guess both hubby and I started young and our kids started young too - oh well

Yea the Devil is the one with them trapped in elevator - we watched preview and thought same - looked too stupid - so we chose case 39 -

I'm so sorry about your loss - I know that can be devastating -

well I'm getting back on my heating pad - this cold weather is hitting hard on my plate and making it hurt worse - ttyl
 
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ctbeth replied to bj1208's response:
Hi Joy.
We have so much in common it's remarkable.
We're even the same age. I'll have to post a pic of me and Kevin, too.

I've forgotten: At what level is your fusion?
I have a C4-5, C5-6, C6-7 and a L4-5, L5-S1. My cervical healed fine, but this is not to say that I have no residual pain in my neck and shoulders as I certainly do.

The lumbar levels entitled me to the mis-fortunate diagnosis I share with you: FBS. You may have read in "My Story", that I had to fight worker's comp for many, many months to get the surgery I badly needed. The neurological damage from all of the compression over all of that time is permanent.

I do not tolerate a heating pad, but we have a Jacuzzi and I could live in it.

Do you have either a temperpaedic (?sp) or sleep number bed?

We are sleeping on a Stearns and Foster, "Orthopaedic Extra-Firm". Kevin (who was working internationally and just came home on 24 Feb this year) does not like it at all. I guess for a "normal" person it is like sleeping on a Fred and Wilma Flintstone bed. We have to make a decision soon or he'll be sleeping on the sofa and I will not have any of THAT, Haha. He's just home from eight months away, so...

Do you think it would be a worthy thought to post a poll regarding, Temperpaedic vs Sleep Number?
I do currently have one on the pain management community, but not everyone there is living with spine damage. A lot of the fibro-folks like the temperpaedic's softness which is a no-nay-never for me.

Have a nice evening. I'm showing my greyhound tomorrow so I'll be to bed early.
CTB
 
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bj1208 replied to ctbeth's response:
hi - my fusion was a single - L5-S1 - but I also have 3 other bulging discs that they are watching at L4, L3 and L2 - so much for thinking it would be more stable after the operation! LOL

We have a hot tub my hubby is getting ready to install outside - it's a big one - got it off of craiglist.com very cheap - think it said if u haul u can have it - it's that big -

hubby was ready to get it installed for my birthday but then the snows came and the frigid temps too - ugh! we also have a swimming pool - so I'm kinda spoiled - i just lay across my raft and soak up the sun!!!

I can't remember what our mattress is - but we spent $1500 buying it - it's and orthopedic one and it is really great - we've had it a little over a year and I still love it -

sure you can do a poll - you may get a few responses - but our membership has dwindled down quite a bit from what it used to be - we used to have close to 10-15 active members - slowly one-by-one they retired - so.......

have a good one - take care - Joy


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