Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
My husband has fibro and it is very debilitating. It has affected every aspect of our lives and he is always in severe pain and often foggy. If he does one thing (like make a simple supper) he's done for the rest of the night. Sometimes we can't have a serious conversation because of the fibro fog. He usually can't hold our 1 year old for more than 5 minutes without severe pain. He usually can't keep up with our 3 year old (physically, or how fast he talks). He's been working an average of 1-2 days per week and needs to rest all day if he works the day before (and he didn't work at all for 8 months after he first got diagnosed)He takes a whack load of medications just to get through the day.
Then there's a nursing aide at my work. I just found out she has fibro after knowing her for 6 years and I never even guessed she had any health problems. She's always cheerful, rarely misses work, and I've never seen her foggy. She has a very physically demanding job and keeps doing it. She said she's allergic to Tylenol and advil so she just doesn't take any painkillers. and I have met a lot of other people with fibro who are like her - coping well, able to do the things that are important to them, their whole lives haven't been turned upside down by it.
It seems to me like my husband and those other people don't even have the same condition. So what I'm wondering is : is there a gigantic range in severity of symptoms among people with fibro? Or is it possible that somebody's being misdiagnosed? Could my husband have something other than fibro since his symptoms seem so much worse than these other people? Or does he actually have fibro, but theyve been misdiagnosed and they actually have some milder condition?
I hope my question makes sense and doesn't come across the same way. I Know the other people are suffering too, but it's hard to believe they are put in the same category as my husband.
Then there's a nursing aide at my work. I just found out she has fibro after knowing her for 6 years and I never even guessed she had any health problems. She's always cheerful, rarely misses work, and I've never seen her foggy. She has a very physically demanding job and keeps doing it. She said she's allergic to Tylenol and advil so she just doesn't take any painkillers. and I have met a lot of other people with fibro who are like her - coping well, able to do the things that are important to them, their whole lives haven't been turned upside down by it.
It seems to me like my husband and those other people don't even have the same condition. So what I'm wondering is : is there a gigantic range in severity of symptoms among people with fibro? Or is it possible that somebody's being misdiagnosed? Could my husband have something other than fibro since his symptoms seem so much worse than these other people? Or does he actually have fibro, but theyve been misdiagnosed and they actually have some milder condition?
I hope my question makes sense and doesn't come across the same way. I Know the other people are suffering too, but it's hard to believe they are put in the same category as my husband.
My husband does the vacuuming. I do some light housekeeping. Weird thing...writing really hurts my hands, but I'm able crochet. I have the hobby of making greeting cards, but I can only work for short periods, then it's back to the recliner and heating pad. I am on disability, and no longer am able to work....though my case is being reviewed right now which is freaking me out.
I'm sorry to hear how bad your husband's symptoms are. Gabapentin has helped me some, but everyone is different.
1. cause (always unknown but I think we have several different "types")
2. speed of diagnosis
3. finding helpful therapies, ranging from yoga to meds to whatever-ness
4. willingness of doctors to keep helping and not just decide "here's your script, suck it up" (me, bitter, nope)
5. accuracy of diagnosis (that's why my docs still rule out autoimmune once a year, tho' my diagnosis sticks. Just to be safe)
6. willingness to keep going---get help
7. depression severity (I suffer the big D, so I know, when it hits, everything is worse, and FM causes depression like any chronic illness can, sooo....
We also have to deal with people who self-diagnose deciding any aches and pains are "fibro" when it's not (either ot get sympathy, or meds, or whatever). Just b/c people say they have it? Ask who diagnosed them, where, when, and with what testing methods. I've run across about a dozen people in my 20 years with Fibro, who decided they had it without ever seeing a doctor---as I learned when I asked them those questions.
BTW, consider that types exist for things like epilepsy, cancer, heart disease, stomach ulcers---everyone's got their own sub-category within a category---so don't worry about what "category" your hubby is in. Just keep doing what you can to help him recover some quality of life. (And in some cases, meds are as much aproblem as the disease. I get that with my epilepsy. Ugh.)
Sorry to go on so long, but after 20 years, there's my conclusions. I could be totally wrong. Whatever.
Peace and healing,
Leo
Having a young child in the house can be a major contributor to symptom severity. Lack of good sleep or too much noise or commotion can knock me down for for a long time.
When I cook I have to start early by chopping and prepping and laying down for an hour. Then I'm able to saute or whatever the next stage is and then lay down for an hour. Then I can put it all in the oven or whatever and I'm totally wiped out. I can't cook and do the dishes in the same day so I make meals that will have leftovers.
It's terribly hard on our love ones but please try not to nag him to do more. I'm sure he's doing the best he can and feels bad enough not being able to work more to support his family.
Take your child out of the house to the park and spend quality time and let your husband rest. It is not his fault that he is sick.
I work full time and when I'm not working I come home to committee meetings, conference calls, or sometimes just a night off, like tonight. I also take a crapload of medication. Like our conditions, our response to medication varies widely.
The short answer to both questions is yes. I agree with everything Leo said about self diagnosis and misdiagnoses.
Years ago., one of the "baseball Mom's" told me she had fibro and takes
magnesium and doesn't have fibro anymore - clearly she was misdiagnosed or diagnosed herself.
There is no cure. Some people are fortunate enough to not have fibro as severe as others
Ashley , I have great respect for you - you are always looking for info and asking questions. I never had that with my STBX - he was verbally abusive 're fibro and mocked the illness. Thank goodness I don't have to deal with that anymore.