So, do you ever...?

[Lisasberry]

Have you ever hurt so bad, 90% of your body? What do you do? Last night my feet, legs, chest, neck, head, arms...every part of me except my lower ribs to the hip bones was in extreme pain. 8 on the 1-10 scale. I thought about the ER, but what could they do? Left my doc a message but have heard nothing.

Just wanted some advice for the next time - which may be sooner than later at the rate I am declining. I appreciate you all so very much. nice to know one is not alone. Fiance tries hard, but others just have no idea of the pain.

Lisa

[virginia07]

Hello Lisa,

and, oh yes, I do feel the same pain as you (also an 8 on the EDSS scale), all over. And it's horrible.

So, what do I do about it? Well: moan a lot; curse a bit...and pray like mad!

I also use herbal remedies (turmeric/curcumin's my favourite for MS at the moment) - and inhaling lavender (essential) oil, helps me relax through the pain. It cheers me up too - lavender's a great anti-depressant.

I'm sorry you're feeling so bad at the moment, Lisa, and I hope things improve for you soon.

Take care,

Virginia

[lori]

Lisa,

I don't know how to cope with that kind of sudden widespread pain. My pain has been a gradual increase localized in my leg. But even with 3 pain meds there are times when it is overwhelming. I feel sorry for my husband and your fiance because it is such a helpless feeling to watch someone you love suffer. (of course I feel more sorry for me)

Did your dr ever get back to you? I hope he had an option for you.

wish you the best,
lori

[HereIam]

Simple answer: YES. Often I am surprised at the amount of pain I live with and think "well, I didn't sign up for THIS part of MS, that's for sure." It's just another invisible symptom, there are so many.

When it hits, usually I lay down on my bed for an hour or two. This some times helps. Mainly it helps to get me out of other people's way, as I get very crabby and nasty while trying to live among others while in horrible pain.

If I were to avoid the things that put me in pain, it would mean sitting in one spot all day every day, and that would be worse than being in pain!

Hope you can find a way to manage, I get it and sympathize.

[rdmc]

I'm not PPMS, but I deal with pain. Sometimes it's localized, sometimes widespread.

After I had my baclofen pump implanted, that did away with a lot of the leg pain.

But my doctor's are pretty tuned into the fact that MS can cause pain. I have several meds in my arsenal. I have a standing script for Lyrica (which I don't take except if I get burning nerve like pain, i.e. TN.) I have Lortab, and I usually take 1/2 of one of those to see if it'll take the edge off, if no relief, I pop the rest of the pill. And then I have a script for a low dose benzo, which I take if the muscle spasms are so tight I can't stand it.

I do agree with lying down, getting quiet, and trying to relax can help, but not always. Sometimes I find if I sit with my ipad and play some mindless game I can distract myself, usually that doesn't work.

I'm also a strong believer in heat and ice for localized pain.

I used to put up with pain, but I finally figured if I have to live my life with MS, I should have meds to help handle my symptoms. To my surprise when I mentioned it to the doctors they were more than willing to a accommodate. I don't take them on a daily basis, and they can see I'm not abusing them, so they seem to have no problem with it. And they don't always work 100 percent, but they work better than nothing.

If you're in that much pain, I don't think a trip to the ER is uncalled for, they can help with immediate pain.

Have you asked your neuro or GP about pain meds to use rather than trying to suffer through it? I find the tension from trying to deal with pain can, in and of itself, really fatigue me.

Hope you find some relief.

[Lisasberry]

Thank you all so very much. I do go lie down for a while - it doesn't help much, but with a Xanax sleep creeps in after an hour or so and helps lessen the burn and pain. I see my neuro Tuesday, so this is number one on the question list. I had no idea MS brought so much pain, fear and uncertainty. I worry about my fiance and if I should send him packing - but that would be another thread on a different page....

MS sucks!
Lisa