new here and feeling a bit lost

I'm not usually one to post personal things on the internet but I'm not really sure what else to do. I'm feeling pretty lost and alone. I was 19 when I finally discovered that fibromyalgia was the cause of all my seemingly random issues..I'm 25 now. I tried taking savella but stopped 2 years ago, the side effects were not worth the small relief it provided. I'm currently not taking anything at all aside from some vitamin supplements. There are days where I feel like I can't take it any more - I work full time with a really long commute and have a freelance job on the side..struggling to make ends meet. I question whether my desire for a "career in my field" is worth the toll it's taking on my well being. I don't really have anyone to talk to about this. Have any of you had a hard time dealing with what to do about work because of FMS?

I live with my boyfriend of 3 years and I'm realizing that he is not so understanding about the FMS. He just thinks that I should exercise and everything will be better. Honestly, I don't have the energy to work out on the weekend or time during the week to even think about exercise. I've tried to explain it to him but he seems to think I'm making excuses. We also rarely have sex anymore..If we try I get stiff, can't be in certain positions without pain and it causes us to pause. Once that happens he gets completely turned off and doesn't even want to have sex with me anymore..I feel like absolute crap afterwards. He also has a hard time with how tired or confused I get/the brain fog..sometimes I just can't find the words or say something completely wrong..after long stressful days at work I just feel like a zombie and I know that can't be fun to be around. All these things cause us to fight too. I try not to complain or put my issues on to him yet it still seems like the FMS is a problem because I'm not "normal". He's already said during an angry moment that he did not want to deal with my Fibromyalgia for the rest of his life and that I need to be more proactive (so I can cure myself basically).

Sorry that ended up being sort of a rant..How do you guys cope with flare ups? Any relationship advice?

Thanks for listening.

Hi, Bluebird. Welcome to the friendly fibro forum! None of us wants to be here, but we're oh so glad this place exists. It's such a relief to have the validation.

I'm so sorry your boyfriend isn't more understanding - I know that hurts a lot. Here you are, pushing yourself to the max, and he's still giving you grief. Do you think maybe he would be open to going with you to doctor appointments? You say you learned you have Fibro 6 years ago...I'm still going to recommend taking a look at "Fibro 101," our 1st thread, because information changes and anyway, it's always good to take a refresher - especially for those of us under the command of Major Fibrofog. "The Spoon Theory" is very good for helping "normal" people understand that when we say we're done, we're really done - and if we don't stop, we'll definitely pay later.


My husband had a really hard time getting his head around Fibro too, in the beginning. I have to say it took years...but we already had kids together, and we stuck it out. Now he totally believes me, but it's still not the same as actually "getting it." I wish he were the type to read about it, and go to doctors with me, but he's just not. And yes, he still gets frustrated at my confused thinking.

His mother - now, that's another story - she makes it pretty clear she believes I just need to get my act together. She's 83 and has always enjoyed amazing health - so naturally, she can't relate AT all. Take, for instance, the time I picked her up at the airport last year and took 2 hours to find where I'd just parked my car....no sense of humor whatsoever! Here I was, apologizing profusely and trying to explain Fibrofog, and she wasn't even cracking a smile.  C'est la vie.  And life's too short.  What's that saying? - "Those who mind don't matter, and those who matter won't mind" - I like that.  


You have to take care of yourself, that's the bottom line. Otherwise, it'll catch up with you and you'll end up even more incapacitated. Of course, the nuts and bolts of that are different for each of us...in my case, I ended up never getting my career off the ground, and was a stay-at-home mom and then a substitute teacher. Now I rarely even do that, but then I'm older, too, so some of the sting has gone.

I hope to hear more from you...we are here to help!

Debbie

If you ladies can work your way up to exercise, you will feel better. The trick is to start really slow. Gradually you get stronger. And the exercise will make you feel better and give you energy. Just go slow or you end up in a flare.

If you are taking supplements, try vitamin D3. It really helps a lot.

Try walking to start out with if you are in a warmer climate. That helps build your strength up.

Best wishes,

Hugs, Karen...

Have you tried different medications? I tried a couple that were recommended by my first doctor that did not work at all. Lyrica, although expensive, only worked for a little while. Ropinirole tore up my stomach before I could get to a dose that might have been effective. I changed doctors and the 2nd one put me on Flexeril/cyclobenzaprine and that works wonders for me. It is also cheap compared to the others. I still get the occasional flare and have Lyrica that helps with those. The Lyrica seems to work better used rarely than as a daily regimen for me. Hope you find something that works for you. Don't be afraid to get a doctor that might work better for you too!

Welcome to all you new members..
Glad you found your way here.

Some of us have already asked for advice re:lack of support from family & friends..
You can find by using search function.

Or, as I did, just reading thru past posts, stopping to read those that interest me...after many years dealing with their perhaps well intentioned but hurtful comments I recently was very blunt in my response... can probably search for my post using keyword 'liar'..

We are in tough spot - being in such pain yet we 'look' fine. Hence the term 'invisible disease(s)'. - another term useful to search. Also applies to some people with lupus, cfs, cancer & more.

Again, welcome