Does anyone else here suffer from fibromyalgia and have difficulities with

[BlueStorm]

family not being able to understand the problem?

I get more fatique than pain so I am constantly tired. My dad thinks that I am just being lazy and that I don't want to work. He says that I have chosen to be on disability. I have tried to tell him that my condition prevents me from doing so, I have even given him a phamplet on fibromyalgia but he never read it. It's like he doesn't care about it or not.

So I don't know if any of you ever had problems trying to get your fam ily to understand your illness, if you have could you share your story.

I'd tell more but I am having concentration problems tonight.

Blue

[Warpy]

1. Families are not going to understand. They can't.

Fibro is one of those unfortunate diseases that doesn't have grotesque physical manifestations like swellings, oozings, or other things people can look at and feel sorry for. We don't cough and hack, our sinuses don't drain green, our limbs are intact, if often useless.

The best you can hope for is a kind of truce. One way you can achieve it is taking advantage of every time THEY get sick with a cold or flu, remind them that you feel JUST LIKE THAT ALL THE TIME. Sometimes it gets through to them; more often, it doesn't.

Men are especially bad about this. Most men don't do well even when the disability is an obvious one. A hidden disability like fibro throws them for a total loop. Divorces are frequent. Your dad is an example of why.

My advice is to get your own place any way you can. Living in squalor in a bad neighborhood is a lot less stressful than living with a hostile family in a good one, and a reduction in stress will likely improve your condition.

In any case, remind him that people are turned down for SSD every day and that it's very difficult to get. Remind him that while he may be a blockhead, your doctor and the federal government are not and that maybe when he goes to medical school, he'll understand a little more about it.

But move. Really.

[nashville_brook]

2. i'm not fibro -- but totally relate

i'm undiagnosed. prolly it's an autoimmune problem. even tho i've spent months in the hospital, been unable to walk, turned yellow, had bloodclots, picc lines, back braces, etc... my husband had little or no sympathy for me during the acute illness. he had none during the chronic phase, with less dramatic manifestations such as the piddling chronic pain, chronic fatigue, malaise, brain fog, swelling, etc.

wish i could be more positive in terms of providing hope -- but people who aren't sick and in pain just don't get it. it's like they turn on you -- almost like on nature shows when the pack attacks the sick cub.

i was discussing this with a friend who is a nurse in an ortho hospital and she said that there's even NURSES who roll their eyes at the transient diseases -- fibro and lupus. get used to it. i'm not used to it yet -- i'm trying to fight back. but, like i said - i don't even have a diagnosis yet. doctors don't want to see me b/c they can't figure me out. i'm on the verge of moving to a city with a teaching hospital just so i can be understood.

find a support group. get a good therapist. read everything you can on one-way relationships and don't let the turkeys get you down.

chin-up!

[Warpy]

5. Cripes, my ex would come to the hospital

during the worst of it when I had tubes going every which way and nobody was sure I was even going to make it and bitch about having to eat fast food and there were no clean shirts and the house was getting dirty blah blah blah.

That's why he's my EX.

I managed to work 12 hour shifts for 20 years after my divorce, alphabet soup, fibro and all. The reduction in stress after my divorce was so dramatic that my condition improved to the point I've been able to stay out of the hospital, my kidneys stopped pouring out protein, and the joint swelling has been rare and mild. Some of those first living situations were AWFUL, but without HIM, it was an improvement.

I mean it about shedding hostile family members any way you can. It makes a huge difference when you shed that kind of stress.

[nashville_brook]

6. i'm on my way to my temporary support hearing -- divorcing too

your ex sounds exactly mine. he kept me constantly on edge. he harbored a lot of anger toward me for not-working in the last year. he'd SAY he wanted me to be a stay-at-home wife, but he really couldn't stand it at all. i was a freeloader, as far as he was concerned. no empathy -- no love, really, when you get right down to it.

[WestHoustonDem]

3. I have fibro and Crohn's, When both were at their worst

I was the single mom of an 8 year old. My family was very understanding but my friends could not understand at all. That was before I connected with Democrats though.

I've been enjoying several years of remission, but have my occasional flare-ups. I'm now blessed with good friends, many of whom I met on DU who are there for me.

[mopinko]

4. i came thisclose to a divorce.

and i had some long time friends decide i was not only not sick, but possibly dangerously mentally ill. (hard to prove this is not true, you will just have to trust me.) the only reason things are going well for me now is that i finally got some effective treatment. i live in fear of slipping back into it.
when you are a mom, it bends your kids into some unfortunate shapes.
a glimpse of the other side that i did learn to appreciate a little, tho, is that it is also hard to be them. it is hard to live with someone whose life is a constant struggle, and who is often unhappy. when i started feeling better, it was a weight lifted off of everyone's shoulders.
whatever you do, take care of your sleep. it was a huge part of doing better for me. there are a lot of little things you can do to make it better.
what are you doing/taking?

[BlueStorm]

7. Thanks for supporting me...

It is hard and moving right now is not an option as the waiting list for most subsidized apartments are loooonnng.

I'm having cocentration problems tonight again.

Blue

[Pharaoh]

10. Tis the nature of the disease

I have chronic fatigue, fibromyalgia and depression,

I have people who say they understand, but deep down I think they are skeptical, this includes family, my employer, and even some doctors I've come across, I do think alot of this just makes it all worse, and there is a feeling of hopelessness,

I have put in for a disability retirement, after 28 years, and 15 of them with fibro, I've just had it! nobody has a clue what your going through, you look just fine to them, of course we have learned to hide it also, When someone asks how you doing? They realllY don't want to know.

I really believe when I can get away from some of the stressors at work my fatigue may lessen, but it's the worse it's ever been this year,,I pray to be free of work by the end of this summer!

[OhioChick]

8. Here's a site

with a lot of information and a great group of caring individuals. (Regarding FMS and CFS)

http://p082.ezboard.com/bsunshine35446

[Pharaoh]

11. Well I checked out that site

and if it is'nt the most user unfriendly forum I've ever seen.......

stoned people must run it cause anyone with fibro fog will give up after an hour or so.........

[OhioChick]

12. Actually, it's not too bad once you get past the home page

Here's the forum with informational links:

http://p082.ezboard.com/fsunshine35446frm17

http://p082.ezboard.com/fsunshine35446frm10

.......And the "coping/support section."

http://p082.ezboard.com/fsunshine35446frm3

[flamingyouth]

9. Other people have a hard time understanding chronic pain

Or any kind of chronic illness. I think this is very common, and I'm sorry to hear that your dad is responding in this way to you.

I come from a long line of very "tough" Scandinavian people who never got sick, never took time off from work, etc., that sort of thing. Then when my parents got older and started to have health problems of their own, they suddenly became a LOT more sympathetic, I noticed.

Hang in there. You're not alone. :pals:

[hyphenate]

13. Not with my family

But with some friends. Like my friend Steve doesn't understand why I can't go hiking with him, and when he parks the car too far from the doors why I get teed off. By the time I reach the store, I'm already in pain and exhausted. He really doesn't get it--he thinks I'm whining. I've got both the exhaustion and the pain, and I'm also in a clinical depression. Add a few more things to the list (diabetes, heart disease) and life isn't exactly fun. If I could do more, I would. But it's difficult. And he doesn't get it at all.

He said he's had depression, but I doubt if he really has. If he did, he would know it's not something you "snap out of" and he would know that just existing every day can be a major deal. I've tried to tell him that if a day is planned to be out of the house, I can't do much else that same day--I have to gear myself up for whatever the day calls for, and plan the expenditure of energy carefully. But since he's healthy, it doesn't make any sense to him. More often than not, I've had to cancel out on him because on several occasions when we've planned something, it ends up being more grueling than I can deal with, and I end up in bed for three days afterward. He doesn't understand, and I doubt if he ever will.

[ChickMagic]

14. Oh yeah

And my sister is a PA, so she should know better.
My doctor says I have "world class fibromyalgia".
He's beginning to think it might actually be MS,
but I'm afraid to find out.