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Hi Barbara,

How are you today? I hope the rain has not made your pain worse! I know

when it is going to rain by the way I feel. It has finally stopped

raining here and I am looking forward to a bike ride this afternoon. It

seems that since the headache went away maybe it was not related to the

provera. I had to stop taking birth control pills when I was about 22

because of headaches and numbness, pre-stroke warning signs. That is why

my doctor only wants me to take this for 14 days. If this does not work,

I guess it will be time for another laparoscopy, which is a piece of cake

compared to ankle surgery! LOL I just hope I get back to being my

abnormal, unusual self! My doctors all tease me about my " weird "

responses to medical treatments and medications! I still have a large

ring on my chest from one of the surgical electrodes they used during the

surgery on March 31. That was almost 4 weeks ago and I have been using a

medicated cream the doctor prescribed to get rid of it! Oh well, it will

go away eventually.

Have you ever tried amitriptyline? I can't remember. It seems to make

my leg stay warmer and seems to be dulling the nerve irritation I have in

my RSD leg. I only take 10 mg at bedtime to facilitate sleep and it is

helping with that too. I sleep for at least 4 hours before I wake up

from the pain and then I have been able to go right back to sleep once I

roll over. Another one that worked well for me years ago was Pamelor. I

only took 10 mg of that too initially and it worked well for me.

Eventually, after a few years, I worked my way up to 175 mg which was too

much and I started developing petekia (sp), a red pinpoint rash that

spread rapidly while I was sitting in class. I went to my family doc and

he said I was bleeding internally and that the red dots were capillaries

bursting. Well I had to stop all meds immediately and went through

terrible withdrawal! I couldn't get out of bed for 4 days, thought my

head would explode and I couldn't keep anything down. My meds were then

reintroduced one at a time and they determined it was the Pamelor so I

couldn't take it anymore.

I am going to a new pain management doc on Monday and feeling a little

apprehensive. Will he believe me? Is he going to think I am crazy? All

those questions running through my mind. At least he can see the atrophy

and how quickly it gets cold when it is not covered with a sock or

something. He can see the loss of range of motion and shiny, red,

peeling spot on my ankle. I think he will agree that I have RSD but my

real question is " what will he want to do about it? " His findings will

influence the surgeon who is proposing the surgery to bury the nerve

under the muscle. I just don't want to do the wrong thing.

I went to a friend's house Monday to help her put together her gas grill.

She has a 2 story house and after walking up and down the stairs a few

times my legs really ache! Maybe it was the sitting and standing while

putting together the grill that did it! I went to her house again last

night to help her fix her VCR as it ate her friend's tape and after

walking up and down the stairs my legs really started aching again! I

wish there was some way you could arrange your house so you bedroom was

on the first floor. That might make things a little easier for you.

Then again, all of us need to keep using the RSD affected parts to keep

the atrophy to a minimum.

Well, time to get ready for that bike ride! Take care,

DJ/Debbie

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Guest guest

Hi Barbara,

How are you today? I hope the rain has not made your pain worse! I know

when it is going to rain by the way I feel. It has finally stopped

raining here and I am looking forward to a bike ride this afternoon. It

seems that since the headache went away maybe it was not related to the

provera. I had to stop taking birth control pills when I was about 22

because of headaches and numbness, pre-stroke warning signs. That is why

my doctor only wants me to take this for 14 days. If this does not work,

I guess it will be time for another laparoscopy, which is a piece of cake

compared to ankle surgery! LOL I just hope I get back to being my

abnormal, unusual self! My doctors all tease me about my " weird "

responses to medical treatments and medications! I still have a large

ring on my chest from one of the surgical electrodes they used during the

surgery on March 31. That was almost 4 weeks ago and I have been using a

medicated cream the doctor prescribed to get rid of it! Oh well, it will

go away eventually.

Have you ever tried amitriptyline? I can't remember. It seems to make

my leg stay warmer and seems to be dulling the nerve irritation I have in

my RSD leg. I only take 10 mg at bedtime to facilitate sleep and it is

helping with that too. I sleep for at least 4 hours before I wake up

from the pain and then I have been able to go right back to sleep once I

roll over. Another one that worked well for me years ago was Pamelor. I

only took 10 mg of that too initially and it worked well for me.

Eventually, after a few years, I worked my way up to 175 mg which was too

much and I started developing petekia (sp), a red pinpoint rash that

spread rapidly while I was sitting in class. I went to my family doc and

he said I was bleeding internally and that the red dots were capillaries

bursting. Well I had to stop all meds immediately and went through

terrible withdrawal! I couldn't get out of bed for 4 days, thought my

head would explode and I couldn't keep anything down. My meds were then

reintroduced one at a time and they determined it was the Pamelor so I

couldn't take it anymore.

I am going to a new pain management doc on Monday and feeling a little

apprehensive. Will he believe me? Is he going to think I am crazy? All

those questions running through my mind. At least he can see the atrophy

and how quickly it gets cold when it is not covered with a sock or

something. He can see the loss of range of motion and shiny, red,

peeling spot on my ankle. I think he will agree that I have RSD but my

real question is " what will he want to do about it? " His findings will

influence the surgeon who is proposing the surgery to bury the nerve

under the muscle. I just don't want to do the wrong thing.

I went to a friend's house Monday to help her put together her gas grill.

She has a 2 story house and after walking up and down the stairs a few

times my legs really ache! Maybe it was the sitting and standing while

putting together the grill that did it! I went to her house again last

night to help her fix her VCR as it ate her friend's tape and after

walking up and down the stairs my legs really started aching again! I

wish there was some way you could arrange your house so you bedroom was

on the first floor. That might make things a little easier for you.

Then again, all of us need to keep using the RSD affected parts to keep

the atrophy to a minimum.

Well, time to get ready for that bike ride! Take care,

DJ/Debbie

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

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Share on other sites

  • 1 month later...
Guest guest

Barbara,

The garden pictures are wonderful........oh, if only I could have one of

those spaces to piddle with! That would make my life complete, quilting and

gardening! I don't understand how you get down to do something like that?

Please tell me what the white plants are? I don't think we get those in

Alaska.

Now about all of you moving to Alaska........there's another benefit to

living here: once a year we get a dividend check from the oil companies.

Last year it was almost $2,000.00 and year after next they are talking about

ending the program and giving each person $25,000.00 ( a family of 4 would

get $100,000.00 at once!) We could buy allot of medicine plants with that,

huh? Start packing......we can start an RSD commune.

Barbara, you said you were waiting on a settlement........can I be nosy and

ask if it is from workers comp? SSD? or whom? You don't have to tell me, I'm

just curious.

in Alaska

rsd We Can Scoot Together

Dear Debbie/DJ,

I too am waiting on a settlement . So it will be off to Dizzy World ( as I

call it) for all of us. They now have electric scooters for rent and we can

clean them out of the whole lot for the day and have our own races !!!

Sounds great to me.

I also love Kings Dominion, I used to love the big water rides and coasters,

Busch Gardens ( Florida and Virginia too) !!! It's nice to dream, but I

don't think I'd live through one ride right now.

Soft Hugs Barbara

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