HI! I'm Lynn..and new here..I have RSD..my story

[Guest guest]

Hi everyone! I'm the new girl for today! My name is Lynn and I live right

smack dab in the middle of Florida! and am a very rare..native of the

state! In fact, my grandchildren are 5th generation Floridians AND our county!

Pretty neat really..( or boring..I guess however you look at it!)

I am 50 years old..WOW! I still can hardly believe I'm 50!! I have had RSD

since Feb. 1997. We were leaving a restaurant at closing time and the dew

had fallen on the handicap ramp which is just outside the entrance/exit

doors. They had painted them neon yellow because they had had people tripping

on it. However, they hadn't roughed up the surface of it and it was slick

when wet because of the paint. I fell so hard that my shoes flew off into

the parking lot! Within hours, I was in horrible pain. I had never felt pain

like it before. And over the days, it got worse and worse.

I went to our chiropractor & after working on me for a week, he retook

xrays. He said my back looked like I had been in some type of trauma since he

had last taken the xrays.. I hadn't...other than the fall. He said he

hated to do this, but he thought I should see a GOOD orthopedic surgeon. I have

degenerative disk disease in my spine and had kept it pretty much under

control until this.

I went to an orthopedic clinic and they did tests and therapy for 3

months and I kept getting worse. Finally they said the only thing they could

see

left was one disk that looked the worst..and doing spinal fusion there

might possibly help. I remember asking them what chance was there I could be

worse after surgery ( other than dying of course) ..and they said it was

about a 1 1/2 percent chance..and about an 86% chance of pain relief success

of some kind. I was in such horrible pain that I said, Go for it! Well, as

I'm recovering from surgery, I realize that my legs.. which before the

surgery were fine, were now very painful & very weak. My husband would have to

help me shower and one evening I asked if he would shave my legs.. as he

started, I just KNEW he was striping skin off of my leg, it hurt so badly! I

yelled out that it was hurting me badly and he was cutting me.. and he

showed me that he wasn't cutting me and was being very gentle! Well, I'm sure

those of you with RSD know this is the sensitivity that is so common with

RSD. This would also happen if someone patted me on the leg.. and I thought I

must be crazy feeling like that was hurting me!

When I went back for my 2 month recheck after surgery, the surgeon looked

at me and said, Oh my GOD.. you are getting RSD!!! " When my husband and I

both asked, WHAT is THAT?? He said that it was the most painful thing you

could possibly get..and that people with it often tried to commit suicide,

the pain was so horrible! I will never forget hearing him say that!

Well, there just happened to be a lady at my PT's that had been diagnosed

with RSD and she told me about her pain management doctor that was near

us. What a blessing that was! He was an amazing doctor. ( no longer

practicing now ..Sigh)..The physical therapist also thought my legs looked like

RSD

...and said I should go see this doctor.

And thus began a long journey..that I am still in. I have had trigger

point injections, bier blocks, lumbar sympathetic blocks, epidural blocks,

epidurals left in attached to a ball pump with marcaine where I could clamp it

off or let it run..until my legs were tingly enough to get pain relief then

close the clamp. , right lumbar radio frequency sympathectomy, spinal cord

stimulator trial, patches of specific blood pressure meds that often help

sensitivity, all the different seizure type drugs including neurontin, and

pain medicine.

I even saw a physical therapist who specialized in RSD. That was pretty

neat..but I got kicked out of the program because I was just too sensitive &

it would cause me to get a lot worse instead of better. So..pain medicine

is the only thing for me that has worked at all. I'm blessed not to be on a

very high dose..thank the Lord..and it at least takes the edge off the

pain..most days..

I am also affected by barometric changes in the weather.. in fact, I think

some of us should get together and put together a business where the

meteorologists use us to predict the weather along with their other

instruments!

Yes???

After I went through the spinal cord stimulator trial, I did have a kind

of strange thing happen. I started 'feeling' better. I have always just not

felt well through all of this..but I noticed that I felt better..and the

pain wasn't quite as severe. SO..I started trying to do more..and found out

that if I took it gradually, I COULD! For 2 years, I was in a partial

remission. THey wouldn't call it a complete remission because without pain

medication, I would go right back to the same pain as before..so I still had to

take pain meds. But I did everything that I had done before getting RSD. I

DID have to pace myself much more though...or I would flare. Then as sweetly

as the remission started, the monster raised its head again..and now I am

probably as bad as I ever was.

I have to be in a wheelchair when away from the house as not many steps

or standing until I am in agony..but if in my wheelchair which reclines as

well as has leg supports where my legs can be elevated, I am able to go out

every now and then...not much though. My only comfortable position is

reclining with legs elevated...and some days even that doesn't help. I am able

to walk gingerly in the house and usually around the house to take the dog

out. We have a very sweet little toy poodle named Candy.

She helps me more than you could guess.

The RSD is from my low back down through my toes. And since being

diagnosed with bladder cancer and all the poking and prodding from that, I also

have RSD in my urinary tract. I am finally in remission from the bladder

cancer after 5 years of cystoscopies and treatments at least every 3 months. I

am now able to go 6 months between cystoscopies and no treatments! YES!!! I

am due for my next cystoscopy the end of October.

I also have stage 2 kidney disease, high blood pressure, mitral valve

insufficiency, and Graves disease that I am finally also in remission pretty

much to..I did the radioactive iodine treatment for it, and am now on

synthetic thyroid hormone. Soo..life is, if not anything else, interesting!!!

I have a very strong faith and without God I dont' think I would be making

it. I also have an amazing husband. He is my 2nd husband and we met

online. After a great friendship, he asked if he could come to the States, meet

me, and sweep me off my feet. I let him, and he DID! and I'm still swept!!

He married me knowing about the RSD etc.. and left everything he had ever

known to marry me and care for me. He is amazing! I also have 4 adult

children who are pretty supportive and both my parents which are too. I have so

much love in my life, that helps a LOT!

Well, I've written a novelette here so I will close.

I am already blessed by the posts I have read today from this group..and I

thank you for sharing and being so supportive!

Lynn

[Guest guest]

Welcome to the group,

I hope you find what you need here.

I do know about RSD because I have that with fibromyalgia and diabetic

neruopathy (bad spelling)and a few more things .

I find the pain some days to be unbearable even with my pain pills.

Living in Maine doesn't help Where 6 months out 12 are pure cold,ice and snow.

Blessed be,

Ms.Katurah

>Lynn wrote:

>Hi everyone! I'm the new girl for today!

>When I went back for my 2 month recheck after surgery, the surgeon looked at

me and said, Oh my GOD.. you are getting RSD!!! " When my husband and I both

asked, WHAT is THAT?? He said that it was the most painful thing you could

possibly get..and that people with it often tried to commit suicide, the pain

was so horrible! I will never forget hearing him say that!