new member

[Guest guest]

Hi my name is Becky. I live alone in Ca. I fell down some stairs at

work and hurt my back and knee and neck about a year and a half

ago. I've been in pain ever since. I'm going to have surgery on my

back in September. Fusion of L4,5 and S1 with decompression and to

open up the narrowing of some spaces that nerves go through as 3 of

them are almost close. I've since found out that I've had

pre-existing conditions of DDD and pretty sever Arthritis among

other things. I do remember experiencing pain before the fall but

just ignored it. lol I was busy.

The pain since has been awful. Never a pain free moment. Pain meds

make me nauseous so I (just about) only take them when I'm going to

bed at night when I can't distract myself from the pain. I'm having

to take more and more pain meds which means I'm sick at my stomach

just about all the time. I think I have accepted the fact this is

the way life is going to be because the surgery is not going to fix

everything, so I need to find out how other people are doing it.

In searching I found this group. I've only belonged to one other

group..a bird group. The rules seem daunting as my mind is fuzzy and

I don't know if I can do this group without making mistakes (I'm a

lousy speller), but I've been reading the emails since I joined

about a week ago and It looks do able so I'm going to try. You all

sound so supportive and and real. Thanks for accepting me into the

group.

Becky

[Guest guest]

Welcome. I am new here too. Don't feel bad.. i CAN spell i just CAN'T

type... lololol. And the higher my meds load the worse it gets.

I am hoping the surgery helps you. I have had 2 laminectomies and a

fusion at L4-5 and the next disc up is going. I have drug

sensitivities as well. I had a cortical stimulator implanted and it

has been a VAST improvement to my life. It isnt a cure all for me, but

I can function more days and take less meds than before. Once the

surgery is over and you have healed reassess everything and be sure

you have a good pain clinic. Then bring up the subject of the

stimulator. Mine is a medtronics brand and I am quite pleased. I have

had one battery replacement so far and that wasnt bad at all, not was

the implanting originally. The hard part was being SO careful about my

movements for 6 months after as the electrodes became andchored in my

spinal column.

Once the doc had tried all the other options for me, like drugs etc

and we decided on the stimulator, it took my insurance a year to

approve the trial. I had to jump through a few hoops for them and have

an MMPI ? test. basically a psych test where you answer a zillion

multiple choice questions.. they are making sure you aren't faking it I

guess... sheesh.

But no regrets now.. hang in there. This is all fairly recent for you

and it took me a number of years to fully come to terms with, it isnt

going to get better, and then rebuild my life. I can honestly say.. I

am happy now even though my life is far differnt than it was. It just

takes some time.

Becky wrote:

You all sound so supportive and and real. Thanks for accepting me into the

group.

[Guest guest]

I always have lots of jerking in my legs and back, especially when I

am laying down, but I have noticed since I quit taking neurontin,

gabitril and paxil, and have begun taking cymbalta, that I don't have

" the jerks " as much as I did. It may be your meds. What are you

taking? What is DDD and horners syndrome? I am not familiar with

either of them that I know of.

Thanks for the welcome. I think I will enjoy getting to know some of

the group members as we work daily with our pain monsters.

Lynn

[Guest guest]

Hi Lynn,

Welcome. I have a few very good friends that also have RSD. I know it

is a very painful disorder. I am glad that you have good pain management.

That makes all the difference in the world!

I am and am 35, married with two young kids (6 and 3) and we

live in Northern NJ. I have a very rare bone disease that caused my skull

to be over five times thicker then normal. I showed no symptoms so I was

diagnosed till the age of 20 when I began having terrible morning headaches.

I have undergone two skull surgeries to thin down my skull, another skull

surgery to remove a portion of skull that had been eaten away by infection.

I have also had two brain surgeries, one due to a brain stem herniation and

another to place a shunt into my brain. I have also been in two comas, have

had several other related surgeries and have had well over 30 spinal taps.

I use to have very severe daily headaches. I would wake up with them and go

to sleep with them. They would normally be around a 7 but sometimes would

get up to over a 10 and would cause me to throw up so bad that just rolling

over would induce vomiting. I would end up hospitalized with those for a

week at a time. Thankfully my last skull surgery took care of the headaches

Now though I suffer from terrible back pain through out my back thanks to

all the spinal taps. I am very fortunate as you are to have had wonderful

pain management. I take the Duragesic patch as well though I am on 350 mcg.

every 4 hours and also take Oxycontin and Oxycodone for breakthrough pain.

I have been going for pain management for 10 years now.

Prior to becoming disabled I worked as a Nurse and volunteered as an EMT on

a local ambulance squad. I really miss working and volunteering. Not that

being a stay at home mom to two young ones isn't work because it is but I

miss nursing.

This is a wonderful group of people. I hope you enjoy it here as much as I

have.

[Guest guest]

Hi ,

What meds are you on?

Take care,

[Guest guest]

Hey Lynn,

Welcome to the group. We live relatively close, I am from Northwest Arkansas.

I'm sorry you are in pain but very glad you have good pain management, something

that we are lacking around here.

I have Fibromyalgia, cysts in shoulders (and ovary)with nerve pain, arthritis in

leg/ankle from non-union fracture, and 4 bulging/ruptured discs in my back (T

area and S area) and endometreosis(had surgery for this and its now coming back

full force).

Did you knee ever get better or does it just get worse with RSD spreading?

Take care,

Caitlin

Lynn wrote:

Hi,

My name is Lynn and I live near Stillwater, OK. I have had RSD in my left

leg/foot/toes/hip/lower back (and now spreading up my left side andalso into my

hands) due to a simple injury five years ago.

__________________________________________________

[Guest guest]

I am sorry for taking so long in getting back to you, the meds that I

take are: cymbalta, topomax, neurontin, guinifenex, premarin, lunesta, duragesic

patches, lortabs, allegra, prilosec, reglan, actiq, prednisone, and coumadine. I

have tried a number of other meds also but these are the ones that seem to work.

[Guest guest]

Lynn DDD is degenerative disc disease, and horners syndrom was caused due to

surgery it is nerve damage that caused the whole right side of my body and face

to fall or droop different then the left, when I get hot the riht side of my

face turns red and sweats but my left side doesnt. it is strange to see a red

line when I am hot. Thanks

[Guest guest]

Hi Lynn,

I have felt this way many times. The depression mixes so well with the pain, I

often wonder which is worse or which is causing what. I'm really happy with my

" boring " job right now because I know that I probably couldn't handle much more

at this point, so I know what you mean.

I hope you do find the guidence and direction you are searching for. Cheers to

all of us on that note!

Caitlin

Lynn wrote:I hate changing meds. I

feel like I am just shopping all the time and then I wonder if the

changes are really physical or more emotional...just praying for

guidance and direction to find it.

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