Re: 'Tis me, again

[Guest guest]

Hi Kirk and all,

I too, struggle daily with this x.x..x disease. I have some really bad days

some better days and a few really good days (but not many and when I say

really good days - I mean a few hours).

I've been really, really sick since 2002. But struggled with flu like

symptoms daily all through 2001. The more I do in a day - the worse I am.

Because I have had shingles multiple times and I have Trigeminal Neuralgia

on top of Stills (and Fibromyalgia as a secondary dx to stills), I pretty

much struggle daily.

I use to have headaches all the time because of the Trigeminal Neuralgia.

The Neurologist put me on Topomax at night and that helps to reduce the pain

from headaches and TN (at least manage it). I also take muscle realxers

(just at night) and the two together really made a difference in regards to

my sleep pattern. Have you ever tried Topomax (it's an anti-siesure med)

and a muscle relaxer at night to see if it would help you have a more normal

sleep pattern? Just a thought. You could bounce this off of your PCP, but

you may need to see a neurologist for it.

I have fevers daily - the more I do, the higher they ARe. Occassionally

they will really spike high for no reason - Like last night it spiked to 103

... Just plain miserable. Drenched, etc. Even with the low grade fevers I

get that way because my normal temp is so low. Kineret has helped, but hasn

t taken all of the temps away. MTX also. I'm also on a low dose of pred,

but its something that I've been wary of every staying at high doses of for

extended periods.

Not to sound all crazy or anything, but the support of my family, friends

and my faith is what gets me through this - along with taking it one-day at

a time. If I'm having a really bad night or day, I know that the next day

may not be as bad. That helps me.

I also know to never give up in trying different combos of medicine. It

sounds to me like you don't have the right combo of medicine at all. You

should be able to get some relief and if you aren't getting any relief at

all - you need to keep pushing for an answer. The Doctors aren't God and

they don't know everything and if the ones that you have gone to so far

haven't given you satisfactory help, you have to keep pushing.

For instance, right now, I am having problems with my back and my abdomen -

I have an appt with my PCP tomorrow and she's new to stills, so I know that

I will need to educate her a bit to get what I need done so that I can get

the correct care, but I'm ready to do this. I want answers. I don't want

to be told, lets just wait and see how it is in a few months, when this pain

has kept me down for almost a month.

Anyway - this may not have answered your question, but I hope it helped a

little bit.