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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   anyone have this when they are sleeping? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/146505-sleeping.html)

fmichael 03-13-2011 07:30 PM

Quote:

Originally Posted by debbiehub (Post 752628)
Thanks for all of your advice.. Grarme- what kind of sleeping meds do you take?

Debbie -

Sorry for the belated response. Ever since I've been with Dr. Richeimer (2003) I've been using a compounded ketamine gel. And it's funny, most of the pain in my feet is either compression (as in having my ankles garotted with steel bands), a sense of having my toes worked over with a hammer, or deep "bone crunching" pain in the ankle joint.

But late at night, for some reason, is when they turn bright red and begin to burn. The current mix is Ketamine, Gabapentine and Lidocaine (10, 5 and 5%, respectively) in an "Ogel," and works wonders. Although it's prescribed twice a day, I generally only use it at bedtime, unless my feet are really hurting and I have to put on shoes and socks to go somewhere. As such, 500 ml. lasts about two months, which is ironic because if I was using it 2/day as prescribed I would go through it in a month, and yet my insurance co. is only willing to pay for 400 ml./mo. as prescribed.

Why haven't I asked Dr. Richeimer to start writing a 400 ml. Rx? Because I just learned a couple of months ago about the 400 ml. policy from my wife, where we are required to pay cash up front and my wife - as the named insured - gets the check months later, depending on how may times the claim is rejected because the insurance company's clerks scan their own form in backwards! Still, it means that I write a check for $802.00 up-front, and three months later we get back $581.60 which is net of the $60 co-pay, so the carrier is clearly having the benefit of the float.

If WC can be compelled to pay for ketamine infusions, I don't see why the gel would have to be out of reach. But then, what do I know about WC?

Mike

gramE 03-14-2011 02:03 PM

Mike,
Thank you. Too many times I tried to explain to my dr that I could not do the compression sock because my ankle already felt like it was wrapped with rubber bands like we did when we were kids to make our fingers or hands turn blue and then we took them off really fast! He was sure I was a whiner and said the pain would not go away unless I wore them every day. Loose socks increase the pressure, but it is there even without socks. I love it when someone validates me by sharing a pain. Sorry. But thanks anyway.

GramE

debbiehub 03-14-2011 06:25 PM

Gel
 
Quote:

Originally Posted by fmichael (Post 752736)
Debbie -

Sorry for the belated response. Ever since I've been with Dr. Richeimer (2003) I've been using a compounded ketamine gel. And it's funny, most of the pain in my feet is either compression (as in having my ankles garotted with steel bands), a sense of having my toes worked over with a hammer, or deep "bone crunching" pain in the ankle joint.

But late at night, for some reason, is when they turn bright red and begin to burn. The current mix is Ketamine, Gabapentine and Lidocaine (10, 5 and 5%, respectively) in an "Ogel," and works wonders. Although it's prescribed twice a day, I generally only use it at bedtime, unless my feet are really hurting and I have to put on shoes and socks to go somewhere. As such, 500 ml. lasts about two months, which is ironic because if I was using it 2/day as prescribed I would go through it in a month, and yet my insurance co. is only willing to pay for 400 ml./mo. as prescribed.

Why haven't I asked Dr. Richeimer to start writing a 400 ml. Rx? Because I just learned a couple of months ago about the 400 ml. policy from my wife, where we are required to pay cash up front and my wife - as the named insured - gets the check months later, depending on how may times the claim is rejected because the insurance company's clerks scan their own form in backwards! Still, it means that I write a check for $802.00 up-front, and three months later we get back $581.60 which is net of the $60 co-pay, so the carrier is clearly having the benefit of the float.

If WC can be compelled to pay for ketamine infusions, I don't see why the gel would have to be out of reach. But then, what do I know about WC?

Mike

Mike,

I used to use the gel too...isn't it very sticky? I have not gotten it in years though, The pain in my feet when I am sleeping is so hard to explain. It hits booth fee the same and its the whole foot..kinda like they fell asleep but not quite...

kathy d 03-14-2011 11:02 PM

Dear Pete,
You said "My feet hurt so badly in the morning, all I do is say ouch ouch ouch when I first try to walk." It is nice to know I am not the only one in the am saying Ouch Ouch too! I absolutely HATE the first time I put my feet on the floor because it is sooo painful.

And grameE said "Something just happens in my whole body when I get shoes and socks on." I have the same problem too! I can't put socks on my feet until about noon. Even then the pain is horrible. It is nice to know (unfortunately my dear friends) that we are all different but have alot of the same issues to deal with. That is why I love this site. It is an amazing support system. I learned more here than with most doctors!! Best of luck to all and I pray each night for lower pain for all people suffering with chronic pain especially rsd.
Take care,
kathy d

denise18 03-15-2011 06:13 PM

I have dealt with this for years and my neuro put me on klonopine and its seems like a miracle no pain or burning. Also after 22 yrs I feel like my arm belongs to me and the redness and swelling seems less.

debbiehub 03-15-2011 08:57 PM

hi
 
is klonopin like xanax?

Debbie

fmichael 03-16-2011 02:03 AM

Quote:

Originally Posted by debbiehub (Post 752984)
Mike,

I used to use the gel too...isn't it very sticky? I have not gotten it in years though, The pain in my feet when I am sleeping is so hard to explain. It hits booth fee the same and its the whole foot..kinda like they fell asleep but not quite...

Dear Debbie -

Truth be told, I'm not sure what's going on with your feet is purely RSD/CRPS, based on the second sentence of your post. It may be time to see your neurologist.

But as far as the gel is concerned, its formulation is a matter of art as much as science. It took a while, but the same pharmacist has been compounding mine for 8 years, and now it's smooth as silk. (For what it's worth.)

Mike


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