[amiallison]

I have some questions and I hope some of you can help me:
Do any of you hurt all the time? If you hurt sometimes do the pains move like from top of leg to bottom, or one side to another?
Do the pains last hours? weeks? days?
The same for the tiredness, lethargy?
Do the pains and tiredness always occur together? Is there ever one without the other? Or one before the other? Is there a pattern?
Are these flares?

[Snoopy]

Do any of you hurt all the time?

Sometimes (comes and goes)

If you hurt sometimes do the pains move like from top of leg to bottom, or one side to another?

I have bi-lateral leg pain. My pain does not move around but encompasses both legs top to bottom.

Do the pains last hours? weeks? days?

Yes to all three.

The same for the tiredness, lethargy?

Sometimes (comes and goes)

Do the pains and tiredness always occur together?

No

Is there ever one without the other?

Yes.

Is there a pattern?

No

Are these flares?

An exacerbation (attack, flare-up, attack) is defined as a worsening of old symptoms and/or the appearance of new symptoms lasting more than 24 hours continuously. Exacerbations are caused by inflammation of the Central Nervous System(CNS). Exacerbations can last weeks to months.

Having pain and fatigue can simply be part of living with MS.

Information about Exacerbations:
http://www.nationalmssociety.org/abo...ons/index.aspx

[Erika]

Same answers as Snoopy, except my body hurts all of the time somewhere; mostly the legs from MS and in the joints from something else ?

With love, Erika

[SallyC]

Hi Ami. I have had all of the symptoms that you mention, at one time or
another, over the 50 yrs I've been infected with MS. Some at different times
apart, and some together. I don't have regular flares anymore, but flares are
stronger, usually, and as Snoopy
says, includes old and some new symptoms. You usually have no doubt,
when you are having an exacerbation.

When in doubt, go to ER or call Neuro/Doc, to see what he thinks or suggests.

Feel better soon.

[doydie]

My pain is pretty well from my neuropathy in my legs and feet. Pains and needles, hot or cold or both at the same time. Night time is the only time it really bothers me and my meds control that pretty good.

[Debbie D]

i have almost constant pain in my legs from spasticity. I also have fibromyalgia, which is a different type of pain.
The fatigue usually comes from the body fighting the tightness, at least for me. It takes a lot out of a body to slog through wet concrete, as it feels for me when my spasms are bad

[NurseNancy]

pretty much what the others have said.
i have a lot of muscle pain. also a dx if fibromyalgia. altho one neuro thinks it's MS pain. some drs don't agree but most of us do that MS er's have pain.

i've learned to give in to my fatigue. taking a nap really helps my pain.

one of the best things i learned my first yr with MS was to listen to my body.
if i was out doing errands and pushed to finish my "list" of things to do i payed a price. if i went home to rest i did much better.

i also learned to be gentle with myself. and the best thing i learned was to have patience with myself. i got slower, had to make a few adjustments, like using a cane. it's been 11 yrs and i still drive and i'm independent.

[Erika]

That's a really good point you made about the connection between pushing beyond fatigue and then getting pain. Same with how extra sleep can reduce it.

I've found both to be true, although the extra sleep for me has to come in short spells because remaining still for longer than a few hours results in more spasticity and pain.

Its hard to know what is too much activity sometimes because energy levels and reserves can change from day to day. Things might feel OK while you're doing them and then once you stop, the body rebels.
Its a lot like when you don't drink enough water. Once you feel thirsty, you're already dehydrated. With MS and I think Fibromyalgia too, once you feel tired, you've already over done it.

Taking breaks every so often to evaluate how the body is doing (if it can get back up again relatively easily after sitting for 15 minutes), goes a long way.

With love, Erika

[amiallison]

Thanks all of you. This pretty much describes me. Along with some sight problems on and off, bad balance and that I cannot comfortably stand still. I am waiting for my new insurance card and I am starting all over. Too many doctors each with a different idea ending up with no real diagnosis but a lot of drugs that I couldn't take long enough to know if they would work.
I don't have the luxury of "resting" because I have to work. I spend all of my time sitting until I have to get up and then walking until I have to sit. The doctors all tell me to "keep active to feel better" but it really doesn't work-I always pay for it later. It's hard to explain to anyone all of these symptoms that come and go, alone, together, for hours or days and no doctor has ever really seen when I'm bad.
Again I appreciate the sharing.