New member and just want to take with people than understand fyermyalgia.

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New member
Apr 16, 2016
Hi, I've been suffering from fibromyalgia for 6 years but it feels like a lifetime. The worst part about this is that your own family doesn't fully understand this illness or even care to understand. It's been to long and they just make me feel like a drag so I wish to contact people that understand this illness and side effects. I'm tired of being stuck in my room when I'm having a bad episode. My husband is very active in all ways so he doesn't understand that forcing me on a hike, walk, extecise, daily sex and forcing me to go out will not snap me out of it. My children wish I was their old mother that would alway take them to do physical activity and mom would never get tired. They act like I'm a drag and they just want to do things on their own because they don't know if to count on me for certain activities, parties or outings. When I don't give in to let them go on their own they get upset. When I make the effort to go along am a drag because I get tired too quickly and I need to go home. The newsest set back is that I'm starting to have seizures and the doctors can't give me a reason as to why. So as you see I really want to talk to someone that going through the same situation or had gone through it at some point. How you got to make your children and husband understand and still respect you.
That's a hard one and i have been through and still go through the emotions you describe.

There are ways to show and give them information like books or down loading info from the web and their is a good video on youtube by Haullie Volker called voices of fibromyalgia that might help them get a clearer picture of how it is for you.

One would hope respect would come just from the fact you have been and are no doubt a great wife and mother.

Maybe you shouldn't stop them going out on their own so they can let off steam doing activities you can't keep up with and make use of that time to truly rest and enjoy the peace and quiet or pamper yourself with a long bath and reading or whatever you enjoy within your capabilities.

We all have to make adjustments but this is two ways...daily sex and hiking and forcing you to go out when you have fibro seems way too demanding.

I wouldn't give in too that at all. I think some discussion needs to happen as marriage is meant to be loving and caring in sickness and in health.

It is soooo hard dealing with fibro alone and now you have seizures about which i know nothing. Can they be controlled with medication?

Are their some quieter activities you can do with your children but still have fun as a family like board games, card games painting etc.

You don't say how old they are...are they at the go off with friends age or still very young.

I am sure others have advice...welcome and stay here to ask or vent any time.
My daughters are 17 and 15. 17 year old is moving out for college in a few months. Husband and I have trust issues with 15 year old. We let them out but they want to be out everyday. 17 year old doesn't want to work so she does errand for us and we give her money. Husband works 12 hour shift an usually works 2 to 3 day he has off as overtime. So I'm very board and of course wish my daughters would spent more time with me.
I see so your children are at the age where they are going into adulthood and striving for their own lives and independance.

I don't know the dynamics of your family ....and you have come here for support and we will truly give it.

AS an outsider commenting on the bit about family...when my son was 15 ..16 ...17 his role in my life was as a young man going to college ...out with friends...chilling in his room either by himself doing homework listening to music.....or having mates come round and them having BBQs in our garden or raiding the fridge!!!

Mum was not included.

We were very close and we chatted over meals and he told me where he was going and had a coming home time ...he asked me for lifts....and i gave him my motherly advice..hugs and their were loving boundaries in place....and of course sometimes disagreements.

I think its pretty normal behaviour to be out most of the time provided they are getting home work done and getting enough rest....they are spreading their wings and learning about life.

That must extra be hard for you as you have fibro and get bored but in truth our children don't belong to us and it's not really thier responsibility to keep you company...nice as that would be. If they choose it that's lovely but this is their time for growing levels of freedom and fun.

As far as your husbands time goes could you lovingly explain to him how precious time together is so that he doesn't work quite so much overtime.

This is such a personal thing between you and i know nothing about your life....and can only go back to my original idea of playing the video i mentioned and having a bit of a heart to heart with your hubby about how you feel and what changes you might be able to make so that you can manage your illness and still do things together.

Probably a big part of the change in your childrens' attitude is part of becoming independent and not to do with fibro at all.

My son definitely didn't want me with him at parties when he was 15 and family outings naturally reduce as they grow up.

You are grieving hard for the old you and it takes time to reach fact i would say you never do totally as feelings of 'if only' still rise in me when i can't do the things or go to places i want to so very much.

Take Care
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Thank you for your input and taking the time to give me advice. My husband and I watch a video about fibromyalgia about 4 years ago but I didn't see any change in him. We where having a disagreement a few days ago about my illness and he said all it was is that I'm weak minded. It took me a few day to get over that comment even after he apologize within minutes. I feel he sees my illness like depression and he wants me to snap out of it.
Oh Karr888 i am so sorry you are not getting the understanding you so deserve. I guess one video is not going to change him...maybe send him to this site and see the level of suffering in so many ways that people are going through!

I think almost all of us have come up against people not believing us or thinking we are exaggerating or not trying hard enough. If i knew you personally i could spent the week with you sharing stories, as despite my rational advice i have been wounded endlessly at different times by family who just don't get it.

The internal tears i have shed could fill a bucket...but i expect like you its all kept inside eating away...our needs not being met when we feel so vulnerable and the world just carries on without us.

Please stay on can let off steam and built friendships. You get to know about regular contributers a bit and its somewhere to go when you feel all alone.

I am sure your husband loves you very much and without being biased i think men have a hard job dealing with illness and generally want to either fix or ignore it....and even get angry because they don't want it to affect thier lives so much.

It has caused problems between my partner and i and he is a very caring man but he has said some things that have cut me to the core at times.

When i first got fibro and was very scared as it took over very quickly from good health with no pain at all to my whole body racked with pain.

I could still walk most days and carried on pushing myself to go out do shopping etc but it was getting harder and harder and i would come back from doing things and crawl into bed with a hot water bottle.

Some days i could hardly do anything.

After almost a year of this i could no longer deny that i was never going to get better and was investigating and reading all i could about fibro looking for hope and help. I read that some people end up in wheelchairs and was at an all time low going through grief despair and not yet at acceptance.

I relayed my fears to my partner who bluntly said 'There's worse things than ending up in a wheelchair'!

I was dumbfounded.....but he couldn't feel the pain...i still looked healthy....i was still walking around a reasonable amount and when i said i needed to stop now he couldn't feel how much i hurt ...he couldn't feel that i got out of bed stiff and like i had been run over by bus and would sit with my morning cuppa fighting back tears of pain and frustration.

I hope hearing that helps you feel that i and many others share all your emotions and loneliness...a kind of loneliness not always of being on our own we can be in a room with loved ones.... but alone in a sense of no one around us truly understanding....seeing the world from the place we now do and trapped in our own bodies
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Thank you it let me see I'm not the only one who has a husband that doesn't understand my illness. Thank you once again.
Welcome to forum. Sorry to hear about your husband's attitude :(

BTW, IF your illness would be depression. It wouldn't be easy to snap out of it either! It's not "just like like that" -issue at all.

Your husband seems to belong people who gives advices like "be more outside / take a daily walk / etc" and really think that it would help. They feel well with sports and can't understand that it is not same with all the people in the world. Talk, talk, talk... Explain fibromyalgia, give names for your feelings and tell that stress could make it worse. And your husband creates that stress when not believing.

Take care!
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