Quote:
Originally Posted by Zayne
Leslie my legs did a lot of twitching way back when. It happened so often and it reminded me of the same feeling I would get when my cat walked gently up the covers the same way the cover would feel.
It went away as it moved up my legs  .
Or so I thought it would be the best, only it wasn't as it kept going up my legs. The higher it went towards my knees, the less difference I felt.  .
But I still walk great. It is amazing to my really how well I do walk with dead feet and it all the way up almost.
I'm just worried about when it goes over the knee now and would like to hear in another thread if needed, how they manage if it is over their knees.
It is in hands bad now but I know it will get orse from how my feet did.
It is still managable but I have to keep myself thinking of the better things in my life now. I sure can't lose focus on the good things.
I have been under a lot of stress lately and denying that I am worried and my whole body, especially arms, is doing that bit that feels like my nerves or muscles are switching back and forth, really fast. I don't like it as I've started wondering how Parkinson disease does a body.
After injury, fibromyalgia. More life denenerative disc and then idiopathic peripheral neuropathy. I hope it ends there. |
Hi Zayne,
I have not had RLS but I seem to have severe neuropathy though I only got a symptomatic diagnosis from the ER. I don't have health insurance so I have not had any tests run yet. I do have an appointment with a volunteer clinic in 2 weeks and I'm hoping they can get me in to see a neurologist quickly. It all started 3 years ago with tingling and occasinal numbness in my left foot after I smashed my little toe on a table leg. Now, in the last 4 months after a fall walking into a store with wet floors, I have intense burning or cold numbness in both feet, horrific pain, as if there are little hard shelled creatures rolling around in both legs and excruciating vise like pain in my genitals. I'm only assuming that all of this is related to the toe smash and the fall but I really don't know anything for sure. I have been on 900 mgs. of Neurontin for 3 weeks but it doesn't seem to be helping and is making me very irritable. I don't know whether to cut it out or double the dose as I read that other people are taking much higher doses, some with success. Does that mean I'll be twice as irritable? The overall pain is worse on my left side and I walk awkwardly with a definate limp. I have found that icy or hot circulating foot baths, depending on how my feet feel, with epsom salts, provides relief for a decent amount of time and sometimes light massage if I can stand it improves circulation. I take an extended relief opiate called Opama 2 or 3 times a day and I find it helps better than other pain meds I've tried and it doesn't interfere with sleep. I also take flexeril, a muscle relaxer, at bedtime to help with sleep, which is hard to come by these days. I find some relief but I do feel 'hungover' most of the time, but it seems a small price to pay compared to the relentlous pain. I have to wear something loose and comfortable on my feet at all times, either lined slippers or plastic clogs with socks, regardless of whether my feet are burning or freezing. I don't want to be bound to all theses medications for the rest of my life, but right now it's the best I can do. I am reading lots about vitamin B12 and other supplements that can be helpful. I'll be getting tested for deficiencies at the clinic.
I know I'm sort of rambling here but the severity of my condition has come on pretty quickly and I'm just relaying my experience in the hopes that it will be helpful to others and trying to learn as much as I can by hearing other peoples experiences. I hope some of this has been helpful to you. John