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I hate having fibromyalgia...

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BlueStorm Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-17-06 07:49 PM
Original message
I hate having fibromyalgia...
I hate the tiredness that comes with it and the everlasting aches and pains.

I just hate having no energy at all to do things.

I can't even think about what I want to post...

So does anyone else have complaints about how they feel?

Bah!! I'm gonna go watch tv.

Blue

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ZombieNixon Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-17-06 07:52 PM
Response to Original message
1. As far as I know, I don't have any conditions,
but my neck hurts like all hell. It has for a good few weeks now. x(
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MissB Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-17-06 07:53 PM
Response to Reply #1
2. Your problem is due to all the
turning around, looking at hot women since you're now back on the market. :)
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ZombieNixon Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-17-06 08:09 PM
Response to Reply #2
7. Hey, I'm surreptitious about it.
I don't do blatant, light-speed double takes. :P

Maybe I should. :shrug:

No, I've been spending more time than I'd like alone in my room of late. x(

The knot's from hours of being hunched over a computer screen doing crap work I don't want to do. :(
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BlueStorm Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-17-06 07:53 PM
Response to Reply #1
3. And having migraine type headaches are hell...
So did you do something to your neck?

BLue
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ZombieNixon Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-17-06 08:07 PM
Response to Reply #3
6. Spending too much time hunched over a computer screen, I think.
If I could do all my work on my laptop, I'd be fine, but the computers in the computer science buildings are all either too high or too low for me to maintain a good posture.

And of course, the stress of the past three weeks hasn't helped any. :shrug:
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MissB Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-17-06 07:53 PM
Response to Original message
4. I have no complaints.
Only hugs. :hug: For you, not Zombie.
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flamingyouth Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-17-06 08:03 PM
Response to Original message
5. So do I.
I had a minor breakdown over it on Saturday night when my pain and general malaise interfered with a special occasion. :(
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LordshipLadyship Donating Member (379 posts) Send PM | Profile | Ignore Wed May-17-06 08:27 PM
Response to Original message
8. It's a little known and filthy disease
My husband and I have it, and now we've been thrown into the chronic pain garbage pail, which means some doctors don't take the pain as seriously. Pain, exhaustion almost all the time, weird symptoms, flares from stress and weather and sometimes just foods, and then damn memory fog, so bad we get scared it's something else. Had just about everything X-rayed, blood tested, it's a lousy, lousy thing, and I've watched it bring down my husband more than me, it's hardest on him because he's ex-military, perfectionist, now needs cane to walk outside our place. We've had to have morphine , we have vicodin, on decent days, tylenol, but we try to keep that to a minimum. We've been in and out of hospital ER.

I wish all our fibro people on DU some moments of peace.

What helps us is warmth,aromatherapy pads, thermapads, rest, and my husband reacts very well to aromatherapy, but I know sensitivities are heightened with some, Mr. Ladyship has times he can't stand sound or light. All I can say is find something soothing, shut out as much as you can, and take care. :grouphug:
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CherokeeDem Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-17-06 09:43 PM
Response to Reply #8
9. It IS a Filthy Disease
Edited on Wed May-17-06 09:45 PM by CherokeeDem
I have had Fibro for 9 years, 9 miserable years. I am in the process of packing for a move to Kentucky and I am hurting quite a bit. A nice very hot soak in the tub with candles and incense helps. I wouldn't wish this on anyone but perhaps the BFEE!

I think I hate the brain fog and the inability to concentrate the worst thing that I have to deal with. The pain is constant and as my Rheumatologist said, you just have to learn to live with it. Wonderful...

Have you tried B-12 shots for the fatigue? My doc has me on weekly shots that I give myself...the shots really help me gain some energy. Takes those cement blocks off my shoulders...but of course, the shot itself causes pain. It's a trade off!

Peace to you as well.



Edited for spelling..
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Left Is Write Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-17-06 09:45 PM
Response to Original message
10. I'm sorry you're not feeling well.
:(

I have a friend with fibromyalgia, and it's just an awful, insididous thing.
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Patiod Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-17-06 10:37 PM
Response to Original message
11. Rheumatologists take it seriously
They know that it's an autoimmune thing. They deal with autoimmune things all the time.

I think we're getting closer to an answer - the fact that they have such good stuff for RA is encouraging.
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Hissyspit Donating Member (1000+ posts) Send PM | Profile | Ignore Thu May-18-06 04:23 AM
Response to Reply #11
17. Funny how autoimmune things affect your joints.
For me it is mainly in my wrists and ankles. Overall stiffness in my muscles, too.
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derby378 Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-17-06 10:41 PM
Response to Original message
12. ginbarn sez: "You hate it? So do I"
Edited on Wed May-17-06 10:41 PM by derby378
Unfortunately, her doctor says that her case of fibromyalgia is "world-class."

She's asking if you could PM her if you get a chance.
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u4ic Donating Member (1000+ posts) Send PM | Profile | Ignore Thu May-18-06 01:35 AM
Response to Original message
13. You and me both
:hug:
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UncleSepp Donating Member (1000+ posts) Send PM | Profile | Ignore Thu May-18-06 03:32 AM
Response to Original message
14. :: careful gentle hugs :: I hated it too
Nobody ever understood just how much it could hurt, when there was nothing to see. "You look fine, just tired..." I got so sick of that. I used to get so sick of not being able to stand having my clothes touch me, or being worn out from taking a shower and having to rest before getting dressed. I even got sick of the helpful hints, given the capriciousness of the thing - what works for one person is ineffective for another, and downright painful for another. I really REALLY got sick of nothing working, of having bizarre reactions to low doses of some drugs and no reaction to very high doses of others. I feel for you, BlueStorm. Some days, the worst part is knowing that nobody ever dies of it, and that you'll probably go on living like that for a very long time. No, these aren't very encouraging words, but they're real.

The pain and the other symptoms may be common, but the experience is different for everyone, so I have no expectation that what I did would ever work for anyone else. Living life anyway seemed to be the best bet for me, just ... carrying my miserableness to more interesting places, I guess. Here's my story - maybe it will bore you into a little bit of sleep ;-)

I went from an athletic, healthy cadet to a shuffling wreck between January and March or so of 1993, when I was diagnosed with fibromyalgia. An Army doctor confirmed the diagnosis in around April through an interview and poking my trigger points ("Does it hurt when I press there?" "F#<K$%@&!!" "I'll take that as a yes...") . The next two and a half years were awful, and I barely stayed in school. The summer of 1995 was the worst - I was on a horrible combination of drugs, could neither really sleep nor really stay awake, and couldn't close my hands enough to adequately hold a pencil or a fork. I was in language school at the time - logic being that it was better to be miserable doing something cool than miserable and bored. In the fall of 1995, I went to Germany for business school. What the hell, why not?

There was a ruin on top of a hill near my school that I wanted to see very much. One morning, I decided to go see it. The one flight of stairs in the school building was very difficult to climb, lots of hand rail pulling and a stop along the way, and I had no real idea of how I was going to get to the top of the hill other than stopping to rest often, taking it slow, and putting one foot in front of the other. That's how the climb went, too, hours of slow progress. Then, I saw the light at the top of the hill, and the sky through the tree trunks. I was almost there. The next thing that happened was that my roommate was behind me calling "Slow down". I had run the last hundred yards or so, off the path, up the hill, and had left him behind. I went up the hill sick and came down healthy. I don't know how it happened or why it happened, but the pain never came back.

Sometimes, it happens, that this goes away as mysteriously as it comes on. I knew a young woman who had and then didn't have crippling chronic fatigue syndrome, too. She was bedridden for a long time, but when I met her, she was riding a mountain bike. I was still sick then, and was rather skeptical when she told me she "used to have" CFS.

Anyhow, I don't know if any of that can be of any use to you, but heartfelt sympathy and a story's all I have to give. All the advice you've heard already :-)
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shockra Donating Member (1000+ posts) Send PM | Profile | Ignore Thu May-18-06 03:35 AM
Response to Original message
15. I used guaifenesin for fibromyalgia a couple years ago.
A few of my symptoms got noticeably better. Even the lumps under the skin on my legs started dissolving. But some symptoms were so much worse! Like the muscle pain.

I got a Bowen QRIBb test for Lyme Disease last week, and was in the high positive range. Everyone they've ever tested with fibromyalgia has turned up positive for Lyme, as well as almost everyone with ALS, MS, and Parkinson's. It's the only test where they actually look for the number of bugs in your system and take a picture of what they find under the microscope.

Here's another (actually less accurate) testing agency's take:

Dr. Nick Harris, president of the IgeneX Inc. testing lab in Palo Alto, says if it weren't for AIDS, Lyme would likely be the No. 1 infectious disease in the U.S. and western Europe now. "In our little lab alone we had 350 positive Lyme tests last year, and in the whole country there were 18,000 officially recognized new cases. Our Centre for Disease Control says it is underreported by 10-fold, so that's 180,000 last year alone."

He says a tremendous number of patients with Lyme are mistakenly diagnosed with multiple sclerosis, fibromyalgia, or ALS.

"These people have seen 30 or 40 doctors until they finally luck-out and find one who knows about Lyme and sends them for testing," says Harris. "About half the testing we do is on people like that, who've had Lyme for years, and years, and years. They are completely demoralized and have just been thrown into a category like chronic fatigue because their doctors have no idea what is really wrong."

Lyme disease is frequently called "the great impostor" because it mimics other diseases such as MS, ALS, fibromyalgia, Alzheimer's, chronic fatigue, and bi-polar disorder.

http://mypage.uniserve.ca/~ron-anne/bcnews.htm

It's incredible that doctors are using such inaccurate testing for Lyme, or not even thinking of it in the first place. So many people are suffering terribly that don't have to be! On the other hand, it's much better for profits. :eyes:

Here's a list of Lyme symptoms:

http://www.canlyme.com/patsymptoms.html
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ALago1 Donating Member (1000+ posts) Send PM | Profile | Ignore Thu May-18-06 07:53 AM
Response to Reply #15
18. I had lyme disease about 3 years ago
Luckily, where I lived at the time was a very heavily populated lyme area, so specialists were abound and could properly diagnose me. My symptoms were throbbing joing pain, general malaise, and skin irritation. But if I had left it untreated, I could have gotten chronic pain symptoms that mirror fibromyalgia.

I had a girlfriend with fibromyalgia once. It's not a disease to take lightly, and I can only imagine the frustration one might encounter when one claims it's "all in your head"...
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Hissyspit Donating Member (1000+ posts) Send PM | Profile | Ignore Thu May-18-06 04:21 AM
Response to Original message
16. CFIDS here. Dealing with the "arrogance of the healthy" is the worst.
I have gotten better and then gotten worse. My joints are burning right now.

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Random_Australian Donating Member (1000+ posts) Send PM | Profile | Ignore Thu May-18-06 08:00 AM
Response to Original message
19. ACK! ACK! ACK! Due to the stigma, that happens to occupy a high
spot in my list of diseases that really, really suck. I see you post it under that name even on DU. Pity. Anway, someday a cure, I say!
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