anyone have this when they are sleeping?
 

Lately, when I am sleeping I get this horrendous pain in both feet. I cant even describe it. If I move them it hurts soooo much. The closest thing I can compare it too is as if they were asleep but it is so much worse. Any advice?

Debbie

Hello Debbie!
Sorry that you're getting this. It sounds to me like neuropathy. Talk to your neuro, or dr.
My feet hurt so badly in the morning, all I do is say ouch ouch ouch when I first try to walk.
I had to get New Balance sneakers (always had them since rsd), but in a wider size.
I get discoloration in my feet, and sometimes they swell so badly, I can't wear any shoes.
(I missed a Very important funeral due to that) How do you explain?

Sometimes I soak my feet in the tub, with some epsom salts, and after, or after I bathe,
I spray them with anti perspirant, and rub them with Eucerin calming itch relief. (it's got oatmeal and menthol in it). very nice. (We can be our own compounding pharmacist!)
Then, on go the socks, make sure they're not too tight.

Other than that, you can try to cut a lidoderm patch, and apply it where you can / where it hurts the most.

Unfortunately, this is a peripheral thing, and it's hitting my hands too.

I wish you the very best as always, Debbie!

Pete
asb

TY
 

Thanks for your advice..I did sleep with lidocaine patches on my feet last night because they were burning up- I still got that awful pain when sleeping. I can't even describe it but it makes me cry....Why dp we have this..


Debbie

I would like to make a suggestion about applying the Lidoderms to feet.

I don't think they work well on the bottoms of the feet.
The nerves come down the tops of your feet--- so try 1/2 patch on the instep of each foot, leaning to the arch area.

This works better for neuropathy intervention.

This is a really good site to visualize the foot. Nerves are shown in yellow.

http://www.northcoastfootcare.com/pa...e-Anatomy.html

Look around that site...it is really helpful.

They even show an alternate way to lace shoes to take pressure off the instep:
http://www.northcoastfootcare.com/pa...e-Anatomy.html
This trick really helped me!

ty
 

Ok- I feel like an idiot but where is the instep?

Instep, is the high point over the top of your foot.
Mine is very high. Which give me also an also high arch.
Opposite of flat footed.

I agree w/ Mrs D. and I'm sorry I didn't' mention that.
Do you get more pain in your toes, than anywhere else?

Pete

Yep! Since my last block, it is mostly from the ball of my foot up to my toes. Severity depends on how 'active' I was the day before or the weather. I wore shoes and slippers yesterday to go eagle watching, and my entertainment for seven hours was playing scrabble, angry birds, and sequence with 2 of my grand sons. So I expected more fireworks this morning. Doc doubled my sleeping meds this week so not much bumping to wake me up, but it did. If I would try to lean over on my side and lay one ankle on top of the other, or just bump my foot against my leg it woke me. I have a Chi machine and I love it because

I am not to be doing any or at least limited walking for now, but it does seem to calm my feet and my whole self because it moves my whole
body faster that I can on my own an it really feels like exercise when I
am pretty immobile all day.
Like ain't so bad, I soak in Epsom , them massage each foot with tons
of lubriderm, even between my toes which is like some secret Chinese
torture. Mornings are hardest for me, ost of the time, but I don't
torture myself like most of you, I just don't wear shoes or socks ever.
Well, ok, I wear a special pair open in the back and a thin piece of
leather on top. Naturalizers I think. For socks at home I wear size 10-13 men's heavy cushioned work socks with the tops cut down to just at my ankle so I can keep them on. I can only take them for a couple of hours at a time so i'm happy warmer weather is on the way. Last week, I had to wear socks and boots because of an appt and snow. I read my husband a magazine out loud nearly the entire way as a distraction too keep myself from panicking.

I did suggest to my husband that we take the paper punch and make little lidoderm circles for the bottom of each of my toes! And the color is not always an indicator of the amt of the fireworks going off!

Walking softly for a while,
pat e

Footwear is a "trial and error" exercise for most with CRPS affecting that area. And I've tried plenty!

As I really need the support of an athletic shoe because of other foot problems, but want minimum pressure on the foot from the shoe, I have had the best luck with New Balance running shoes; specifically the 883 model, which is designed with a roomy toe box and forefoot area.

The running shoes have a mesh over a good part of the top of the foot, rather than leather which is not as forgiving.

I also went from a regular shoe width to a 2E in width. The extra width giving additional room to the foot.

This shoe has really helped me a lot in pain reduction and in attempting to keep a good mechanical "gait" while walking.

Good luck.......

Yes before the accident I wore size 5 1/2. Now the smallest I have are size 7 with the leather and they are stretched out. My boots are size 8 1/2. Something just happens in my whole body when I get shoes and socks on. I try different things, haven't found the right combo yet. Skin is my preferred footwear. oh, and a size 7-8 mens slipper with lambs-like wool on the inside.

TY
 

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

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

Gel
 

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 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

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.

hi
 

is klonopin like xanax?

Debbie

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