how many of you have such severe pain that you cannot walk and need a wheelchair?
i am still trying to decide if i belong here. it seems to me that so many people can do things in pain i know- but at a tolerable pain.
i am in bed. i dread trying to get dressed
steff

I am not in a wheelchair, Steff. But I can only be out of bed from 3-5 hours a day. The rest of the time I am in bed or lying down on the couch. For several hours every afternoon and maybe a couple of hours a night I am pretty miserable with the pain. We are all different.

i ask this because i do not think my diagnosis is correct. it seems as if everyone has some mobility. i know everyone is in pain and to some great pain. but it seems that everyone can walk around, in pain, for awhile. where as i can barely make it to the bathroom without knives and acid ripping into my legs and feet, and then that's it. if i crawled on my knees they would hurt the same. i want to scream in agony and i do, just from 10 steps.
steff

I am not in a wheel chair, but I do use crutches (the kind that hook around your arm) to help keep my balance. Does your doctor have you on any medications to help you deal with the pain? If so, maybe you need to try something else. I had to go through several different meds before they have finally found one that is starting to help so I can be functional.

I am sorry you are in so much pain.

i had a 6 week period where i could not put a foot on the floor it was sheer agony.....everyone had different levels of pain and even with the person the pain level varies over time

In the beginning i was the same as Joe, a wheel chair was looking real good alternative than having to walk on my feet, i layed down on the sofa or bed every chance i could.

I was in bed basically for four months crying in pain. Each step was horrible and could barely put my foot down. I wore an airboot and when I got out of it I thought I would die in pain. I'm still in horrible pain and in a flare up but pushing to do more and am out of bed full days and now walking slow outside on short walks but the pain is intense but can do more daily things too. I'm so sorry for everything. Can I ask what your docs think is going on? I'm sure you have had mri of your brain and spine but maybe not cause I know for me they thought it was coming from there at one point for me. It wasn't though. I know I asked before but did you read my response about the tunneled catheter? I wonder if something like that would give you pain relief so you can get moving more. I was against it but now am thinking I may try it after I try something less invasive. Sending thoughts.

I use a wheelchair part time. I can walk short distances, like around the house, but cannot get around something as large as a grocery store, mall or airport without assistance. But it is mainly because of severe auto-immune fatigue rather than pain.

Don't get me wrong. The pain is awful. But I am generally able to force myself to keep moving no matter how much it hurts, whereas if I keep going past the point of physical exhaustion, I will nearly collapse.

There are times, though, when I do have too much numbness in my lower limbs to walk around a public place safely, and I would use the chair then too. Fortunately, these occasions are rare for me.

fanfaire,
whose husband doesn't mind pushing her around (in her wheelchair, of course)

All those diagnoses and the insurance company is fighting? It seems a dumb move on their part. Those are heavy-duty illnesses with positive tests. and I wouldn't have thought they'd do more than try to see if they could intimidate you, with all that going on.

<<Fanfaire,
whose husband doesn't mind pushing her around (in her wheelchair, of course)
__________________
Sjogren's syndrome, fibromyalgia, gastroparesis, diabetes, celiac disease, chronic myofascial pain, periodic limb movement disorder, Raynaud's, hypothyroidism >>


All those diagnoses and the insurance company is fighting? It seems a dumb move on their part. Those are heavy-duty illnesses with positive tests. and I wouldn't have thought they'd do more than try to see if they could intimidate you, with all that going on. (I don't see neuropathy on your list--have you had the nerve tests?)