I have a primary immune deficiency and fibromyalgia. Anybody else?

[DevonRex]

Just wondering because sometimes it's difficult to do all the volunteering I'd like to do for the Obama campaign and it really gets me down.

I get IVIG infusions for the immune deficiency, along with daily prophylactic antibiotics, but I still get sick a lot. And that makes the fibromyalgia worse, of course.

Anyway, just like to know if anybody else has to deal with something like this. I cope as well as possible but there are some days that it gets to me. Sometimes I'm angry and sometimes I'm depressed. I know that's just part of dealing with chronic illness and I'm sure most people here go through the same cycle. What really gets to me is that it makes me feel like such a fraud sometimes. Because I have great intentions of phone banking and all that, but then I get sick and I can't follow through. And then I don't want to explain to people why I couldn't be there because I don't want them feeling sorry for me. GRRRRRRR!!!!!

It feels better just getting that off my chest. Thanks for reading. :)

[mopinko]

1. yup

that is the way it is. i have been doing better the last 6 month or so. the biggest thing, i think, is taking ambien and really getting good sleep. lyrica has also helped the energy level.
but i really see that when i am angry and depressed, i am usually also tired. i see myself going there, and just go to bed. or at least let go if i can, and take care of myself. you just gotta accept that sometimes things don't work out. it's like that for "normal" people, too, just happens at a different place.
but the good stuff can cycle around just like the bad. for me, more energy for work, all the different kinds of work that i do, really makes a difference. big diff between tired from satisfying work, and tired from trying to cope and drag myself through another day.

[DevonRex]

2. I may have to get back on Ambien pretty soon. Now I'm taking

trazodone and it leaves me kind of tired during the day. I take Neurontin instead of Lyrica and it helps a bit. And I take Cymbalta which helps the depression and doesn't keep me awake like the other antidepressants do.

Looks like I'll have to get another referral to a rheumatologist to get back on the Ambien, tho. My primary care doc doesn't like it and won't prescribe it.

I do a lot better if I eat right and exercise. But you know how it is, you have a flare and then you're too damned tired and achy to do much of anything. Those are the days that I wonder how much good I'm getting out of my walks. Sure would be nice to have a cook and a housekeeper and a personal trainer, but that ain't gonna happen in this lifetime.

Oh well. It's just something we have to deal with. Nice to be able to rant about it here, though, instead of keeping it all bottled up. I don't like to dump it all on my family because they've already been affected by it enough.

[mopinko]

3. you primary is an ass.

ok, maybe not. maybe s/he is a really great doc. but i am personally so freaking tired of docs who are scared of sleep meds, but happy to put you on ADs, or whatever else to treat the symptoms of sleep deprivation. ggggrrrrrrrrrrr.
just personal pet peeve. i have fought so many rounds of this battle with my teenagers and their docs, social workers, etc.
and lost them all.

[DevonRex]

4. I agree. I seem to find great specialists but never a really good

PCP. Wonder why that is. Well, I did have a pain specialist who was an ass once but I never went back to him.

I've been reluctant to change my PCP because all the referrals have go go through there and if I change then I have to go through that whole mess again.

Between the insurance companies telling doctors what to do, and doctors caring more about covering their asses than treating their patients it's a wonder we get any help at all.

[mopinko]

5. as long as the surgeons are good

;P

i hear ya, tho. i like my pcp right now, but i have had some shit. i liked my last one right up until the moment that i hated her, and wanted to sue her but was too tired.

[OnionPatch]

6. You're not alone in that feeling you call "fraud."

I don't have your same health problems, mine are different, but they affect me in a similar way. I think a lot of people in our boat feel like this. You have the intentions and desires to do a lot more than you are physically capable of, and it's depressing to not be able to live up to these intentions. It's even worse when you feel like people are judging you negatively for it because you then feel guilty as well. That's why if I feel the need, I will mention that my health problems can flare up unexpectedly. And I refuse to beat myself up anymore over things that don't work out as planned. But mostly I try to find ways to contribute that are more flexible. For example, I am afraid to commit to walking precincts or staffing voter registration booths or other set events, but I found a way to help my local Democratic club by putting together their newsletter each month. I work on it when I am able. I could also help them sort out and print voter rolls for canvassers at any time. Writing LTTEs are easily done from home as time and energy permits. For the phone banking....isn't there a way you can do it whenever from your home instead of committing to a set time at a set event? At any rate, your health should come first and you shouldn't feel like a "fraud." And you aren't alone. I hope things will improve for you. :hug:

[cpamomfromtexas]

7. Have you researched adrenal insufficiency or failure?

I just got diagnosed and sounds like there might be an overlap. The crazy part is if I hadn't researched thyroid issues and found this doctor to do the testing I wanted, we wouldn't have found it. It also disturbs the thyroid as well.