How do you survive with this?

Summertime · 10-07-2008, 09:04 AM

Quote:

Originally Posted by GalenaFaolan

Was the pencil thing like a little wheel with tiny spokes on it? I remember a couple of docs that had one of them and ran it up and down both of my legs. A neuro I saw would have me lie down and he had a safety pin in his hand. I closed my eyes so I couldn't see at all what he was doing, then he would touch my skin, on both legs with either the pointy end or the round part and with either the point or the blunt side I would jump and yelp cause it hurt!! When he told me I yelled about the blunt end we laughed.

That's just an rsd thing. We perceive that a stimulus is very painful when it shouldn't be painful at all. It goes along with the whole skin sensitivity thing. Back when this was done on me I had no touch sensitivity just sensitive to air on my skin.

Usually the cold skin temp is pure RSD. Especially when combined with the burning, severe pain and weakness like that. It's very "normal".

Hugs,

Karen

Hi

The pencil thing was the end of one the q-tip sticks the doctors have in their office. It hurt like heck when he did it.

I think what is confusing me is the combination of sensations I am getting.
Today I have terrible burning in my hip.

Thanks for telling me it's "normal".

Bosco · 10-07-2008, 02:22 PM

I have a spinal cord implant and I have had mine for over a year and wouldnt know what to do now if I didnt have it. It doesnt take away all the pain but takes the edge off. It maybe takes away 60% at times. I have RSD in both of my legs and I am on many medications still but the SCS is a godsend to me. It makes a little tingle sensation that kinda goes thru your legs (for me cause thats where my RSD is) and kinda relieves the pain. I have a charger that I wear either on a belt around my waist or by wearing these little adhesive patches on it to recharge the battery. I have a remote about the size of a cell phone that has 4 programs for me to use for different things that are pre-set by Boston Scientific who are the makers of my implant. You can see a video and get more information about the one that I have if you go to ...

Good luck to you cause this is a horrible horrible monster

and at times I dont know what to do ... I hate what has happened to me. I no longer can do the little things that I loved to do to make me feel like a girly girl. I know to other people its not that important but it was to me. I now am dependent on others to take me places since I no longer can drive a car. I can only walk maybe 10 feet or so on my own without the use of my walker before my legs buckle on me. I cant be the 'Nana' I always dream about being for my little Grandbabies. I cant clean my house the way I 'used' to like things done... you have to just let others help you and I want to do things my way and of course those days are gone. So many things we take for granted... so many little things l no longer have in my life cause I no longer can work and my employer failed to carry workers comp. Which means we are in a legal battle that shows no end in sight. My family have been so wonderful in dealing with what has happened.

I am very lucky to have a fantastic hubby that has shown that he is indeed a true hero for me.

Bosco · 10-07-2008, 09:12 PM

Wouldnt let me post the link to where it tells about the implant I have but you can look it up ... its by Boston Scientific

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