[Sophie_]

Hi Guys,

I hope yee are all well, today was a pretty horrible day for me, I didn't sleep too well last night, I was up walking the floors at all hours with spasms in my hips and just pure back pain that was truly, truly horrible. Legs thankfully are still behaving thanks to the Stim. I had the stim turned up for the back but that became more uncomfortable that any help.

My question is, is there something you do to help you cope when your pain is particularly bad, so bad that getting up out of bed that day is enough and you've taken all the pain meds that you can take. A day when normal just doesn't even have a chance of happening.

Do you just deal with it and pray to God that he takes it away soon or what?

I'd love to know and i'd love to hear your ideas.

Plse PM me if you'd rather not share on the public forum.

thanks

Sophie

[Mark56]

It is just not right that so much pain should bedevil you. Your stim surgery is pretty recent, yes? What an awful predicament! Since my stim was not officially made operational for a couple of weeks after permanent implant, I had to control pain with the pain meds my physiatrist prescribed. I did walk, did lie down, did move carefully. Lay on my side and put a pillow between the knees. Applied cold packs to the incisions. Among my pills was flexeril, a muscle relaxer for the possibility of spasm, and as they occurred due to the disturbance of some muscle tissue, I did use them sparingly.

I pray that your spasms will abate, and soon!!!
CARING,
Mark56gently

[Sophie_]

Thanks Mark,
It sure does suck but hopefully tomorrow will be better, i've taken the muscle relaxers as well to no avai, it's one of those days when even the drugs don't work. Yes my SCS is recent, Dec 2010, myself and Jenna just discovered that we were in the hospital at the same time with the same surgery, same surgeon - Small world I guess.
Thanks for your help, every little advice helps and it's good to have people here that know what your talking about.

Later alligator

Sophie

[Mark56]

Since your physician probably did not prescribe medicinal muscle relaxers which would help with the spasms. Do you have a way to send help to a druggist for an over the counter remedy for muscle spasms, such as a balm or cream. I am bouncing my head off of the wall trying to come up with something for you.

Caring!!
Mark56

[Sophie_]

Hi Mark,
You're very thoughtful, my GP gave me some last time for the times when this can happen but getting them to work enough is the hard part, please God i'll be better tomorrow, i guess I just needed to let off a bit of steam.
How are you today, good I hope?

Sophie

[irljenn]

Sorry sophie to hear how much pain your in! its no fun watching the clock and especially now your back in work it must just make it harder to do that also.

I also tend to pace floors at night for me its the burning pain my feet will burn up so bad they look feel they could explode. i never take sleeping tablets but on friday dr insisted i take one at least twice a week in order for my body or brain to cope with the bad nights this seems to be working a bit for me but I am also back on ketamine which i have to say to seem to ease my pain a bit. i was also perscribed these new patches ( i will pm you the name in the morning as they are upstairs) these patches are like pads of local anesthic and they kind off numb the area and i find them helpful they work for 12 hours now i can look a bit silly with them all over me but however we have to find relief from this pain is worth looking a little silly!!

i hope the pain calms down soon

[Mark56]

Oh, yes, I remember hot foot. To this day have one which seems to sense warmth. Now this is weird given that my feet are numb; but, I have been known to put those blue gel cold packs on my "hot foot" since it felt "hot" and the blue gels seem to help.

I am sorry Sophie about this situation,
Mark56zzz

[Rrae]

Originally Posted by Sophie_

Hi Guys,

is there something you do to help you cope when your pain is particularly bad, so bad that getting up out of bed that day is enough thanks

Sophie

I curl up in a BALL and pray for SLEEEP ! !

Geeze I'm so sorry you are having such a pain flare.

On days like this, I know that I'd burn thru all my breakthru meds, which would leave me with no 'ammunition' for the NEXT flare not to mention taking my liver and kidneys for a ride. And....I'm pretty suscepticle to depression and a day like this would sometimes open a door to some pretty 'dark' thoughts.

I sure wish I had something better to say other than - we sure know what this is like. And that - this place is the greatest place to be to vent or blow off steam.....we usually have to talk each other thru it. It does help

Hey, I wanted to ask you - is this pain the same type of pain you had PRE-scs?
When I have a day like this, it's a whole 'different' kind of pain....
which makes me wonder if the scs is somehow to blame....is it possibly aggravating the nerves?

Wearing tight clothing can spark a flare. Mrs D pointed this out to us over on the Peripheral Neuropathy forum....and sure enuf I realized that my lower back and hips were burning on a scale of 9 - why? Because I had been wearing my lumbar support belt too tight!

Anyway, as Mark and Jenna have shared, my heart goes out to you...
oh, and I wonder if Jen is talking about the Lidoderm patches?

..........Rae

[Mark56]

Reading your post on Nan's thread gave me the history which I lacked in addressing your situation. Now I know as you said above in this thread your surgery was same time as Jenna's [brave Glove trotting soul that she is] late 2010 and that you have returned to work, only to have this spasming flare of pain crippling you despite the apparent proper and beneficial working of your Stim.

It was the spasms that nearly drove me to madness prior to my first discectomy/laminectomy/fusion in the lumbar spine. I was SCREAMING at the top of my lungs into a pillow held to my face so as to stifle the screams. Unfortunately my family had to witness that profile until my lower body began to shut off in the classic cauda equina symptoms which caught my neurosurgeon's attention. Emergency surgery saved me and also brought an end to the sever spasms. Over the course of years spasms have continued to quiet to the point I now do not notice them.

That which gets me down now is the burn through BURNING nerve pain which overwhelms my STIM. I have learned I can tolerate running my Stim signal up and up until it transcends the effects of parasthesia to the point of inducing paralysis. Then, all I truly notice is the Stim signal itself, although the inhibiting side effect is that movement is wholly impossible from the waist down. My doc urges caution in the use of the Stim at such strength since papers have not been written to document long term effects. I do use it this way only sparingly. I do not know whether there would be any effect upon spasm.

I wish I knew what more to suggest regarding your spasms, but I do not know. Reading that your doc now considers a second Stim to bring possbile benefit to you. I hope and pray your doc's care ultimately helps you gain rescue from the spasms, as I know what pain lies within them, oh how I know it.

Prayin for you my friend,
Mark56zz

[Sophie_]

Hi guys,

Thanks for all your messages yesterday, it helps believe it or not, todays blessing is, i'm glad to have found this forum where everyone knows what we're going through. This morning I put on some of those Lidoderm patches that Jenna mentioned, I forgot I had some so and i feel the benefit of them, it's just pure old fashioned back spasms, not like pre scs and thankfully no burning foot although there has been many a day when I would just love to walk on a cold tiled floor, even when it was minus God knows outside!
I sometimes do have more back ache if wearing tight clothes and yet I love me jeans so much! I can't even wear the support belt that much.

I ocassionaly do turn up the stim to overwhelm the antziness of my legs and that helps, turning it up for the backache is more of a nuisance than a help though this is why my Doc is considering the second stim (and for right leg), it hasn't really helped my back much. Restless legs is horrible, often keeps me awake all night but last night I took a sleeper, some of those breakthrough pain meds and I'm happy to report today I feel much better, yippee, I even went to work this morning!

Thanks for all your support

Sophie