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Living With Fibromyalgia - Online Support Group

Ideas or advice for coping?

I am having a struggle with my attitude - much as I hate to admit that! I am finding myself falling into a rut in my thinking and I am not sure how to change it now.

I have gotten into the habit of seeing what I can’t do - you know all those things I used to enjoy doing so much but can’t now. I know that there are still things I can do, but it seems like so much of what I once enjoyed I can’t handle now, at least not unless I want to throw myself into a nasty flare. And that quickly takes the fun out of it!

I modified some activities and that sometimes helps, but even some of those things I can’t do now, even with modification. It’s so frustrating.

So, any ideas or advice on how to get and keep a more positive attitude?

When we’re you diagnosed? I went through a grieving period for awhile after I was diagnosed. I think it’s ok to grieve those losses before accepting a new normal. Gentle hugs to you. :heart:

I haven’t actually been diagnosed yet - just starting the process now. I go in the first of the week for a RA Factor test as my sed rate was 48. I’ve been dealing with this all for over 12 years but it has been getting worse the last few, especially the last year. This last year has been when I have been forced to give up so much.

I used to be the type that if I saw something that needed doing then I did it. If I wanted to try something I did. Didn’t matter what it was - hiking, camping, biking, big cleaning projects, moving furniture, raising various animals (like 300+ chickens, turkeys, guineas, quail and ducks), carrying 50 lb bags of feed, whatever. I’ve worked since I was 11 years old. And don’t tell me I can’t - I would do it just to prove you wrong! My grandma would say that’s the Missouri mule in me - and she doesn’t know where I got it because she kept hers! :laughing:

And yeah, accepting it and grieving are strong right now. You would think dealing with it for over 12 years I would be through that but for most of those years I pushed myself - I wasn’t going to let it get the best of me. And up until about 5 years ago I could do those things more or less on my own. And up until a year ago I could still do them with help or modification, but now? No. And maybe if I hadn’t pushed myself so hard to begin with I wouldn’t have hit such a low now, I don’t know. I do know I can’t go back and change any of that, so I have to live with it now. :cry:

And for some crazy reason the last few days has been a roller coaster of emotions. I am bouncing back and forth between wanting to know and scared to find out. :roll_eyes: And now that I have started the process, I can’t exactly say never mind, I changed my mind. :roll_eyes: Yet part of me feels like if I don’t have a “real” diagnosis, it’s not really real - once I have that diagnosis, I can’t ignore it or deny it, if that makes sense?

As scary as it feels, I think it’s always better to know what you’re actually dealing with. I am so sorry you have lost the ability to do what you used to do. I go back and forth grieving that as well, as so many of us here do. What therapies, meds, etc have you tried? Has anything helped? My latest is water therapy in a warm pool. It always makes me feel much better than when I went in. I can only offer you gentle hugs, emotional support and tell you to hang on - with both hands. :heart:

Don’t know that I really have tried many therapies. I used to love soaking in a hot bath in the evenings but when we moved up here 6 years ago I lost the bathtub, so can’t do that now. I really miss that as it was one of the few times I would see a reduction in pain levels.

As for meds . . . I’ve tried the usual over-the-counter pain meds and every pain/muscle cream I could find - some maybe tried to give relief, but no I can’t say any really helped. I told my son recently that I think most of the creams don’t really help with the pain - but if you get enough on, they give your mind a different sensation to concentrate on for a little bit. :smile:

I got a heating pad recently and am still trying that out. I think though that I need two that are the size of my bed; one to lay on and one to cover up with - then it would cover more areas at once. Course then I would probably roast myself :roll_eyes: and that would just give me new problems so maybe it’s best I don’t have that. :thinking: :slightly_smiling_face:

I guess it will depend on what your final diagnosis is. If it’s fibro, some people get relief from the med Gabapentin, lyrica, cymbalta. None of those worked for me, but they do for some. Taking magnesium malate supplements help me. I often wrap my hand/wrist or feet, or whatever hurts in heating pads. A heated mattress pad helps in winter. Light stretching, swimming, massages, cutting out sugar has helped. I can’t take NSAIDs due to an ulcer, plus they don’t help fibro pain very well anyway, so, I’ve had to search out other ways to get some relief. The worst for me is stress and lack of sleep, so I’ve had to make some changes to reduce my stress. I hope you get a diagnosis figured out soon and can find some relief.

Hi Struggling,
I agree with Debstinydogs and also go back and forth with grieving. I was diagnosed about 3 years ago (though dealing with symptoms for more than 10 years), and some months are better than others. You’d think, by this point, I’d be finished grieving, but no. I think part of the reason is that I am always being presented with new or increasing symptoms, so just when I finish grieving one aspect of the illness or losing part of my “old” life, the next month I’m dealing with a whole new set of symptoms or the realization that “oh, now I’ve lost that friend too”. It never ends. I know this sounds negative, but it’s really about having realistic expectations. We are warriors because the battle is ongoing and to pretend that it doesn’t exist or will go away will only lead us to disappointment. There will be some successes but there will also be losses - days when you can’t even get out of bed and feel nothing but pain and self-pity.

For me, the bright side of the illness is that I no longer put pressure on myself to perform. I can’t perform the way I used to and so I am so much more gentle with myself than I used to be. I am more organized and disciplined than I used to be (especially about housework because to keep the apartment orderly, I need to stick to a schedule that has been carefully crafted to pace light and heavy tasks). I have a full-time job (I can’t afford not to work), but I am no longer part of the rat-race: I am never going to perform at a level that will earn me a promotion, so now I make every effort to make sure I maintain my job and perform quality work, but my health matters as much or more than my job. My illness forces me to make self-care a priority. It’s forced me to appreciate a salary while I can still earn it. It’s forced me to appreciate days when the pain is manageable.

Is it possible that you don’t want a diagnosis because, unlike other illnesses, a diagnosis won’t actually help? There’s no cure. It’s not like they can say “Ah, you have strep throat” and prescribe antibiotics. A diagnosis just puts you into a category of having a condition that baffles medical professionals.

And who the heck would want that?

Thanks GoLightly. I am slowly coming to the realization (once again!) that, like many other areas in life, this is going to be a process, a journey. There will be times of “road work” - delays, detours, traffic cones, flag men with stop signs, bumps, pot holes and all the rest. But there can be times of wonder, discovery and joy, too.

It just depends on how you look at it. We have a lot of pastures around us here. And this time of year they are next to dead. They have lost the vibrant green of spring and summer. And at first glance it is brown, dead. But if you look again, look more closely - see it? There are deep purples, reds, golden browns, yellows, oranges and yes, even some greens. In it’s own way it is still beautiful.

And I am struggling with a possible diagnosis - like you said, what is the point? It doesn’t really change anything, doesn’t really help. And I probably wouldn’t have even tried for one, except for family. I love my family dearly, but they just don’t understand. They try, but the support is very limited. In their mind, if you are sick, hurt, etc. you go to the doctor - you get a diagnosis, meds, and everything is fine. And sometimes it just doesn’t work like that. Sometimes there is no way to “make it all better.”

The doctor ruled out RA and is now saying it is just severe arthritis. And at this point, I am ok with that diagnosis. I don’t know that it makes much difference to me really and in some ways it will make it easier with family. They understand arthritis, they don’t understand fibromyalgia. I have tried for 12 years - they just don’t get it. So for me, if arthritis makes it easier for them to understand, great.

Hello,
I am having the same problem.
I don’t know how to accept the life adaptations I need to make in order to stay functional:( it feels as though part of me has died and I am going thru the morning and acceptance process.

The one thing I have been working on with a counselor is forgiveness. Forgiving myself and the situation. Realizing we all go thru changes and it’s okay. Accepting that I’m not the same person I once was and that I can find joy and new talents in endevers I would have not thought of if I had not come into these limitations.

I hope that helps.

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Oh my gosh you sound just like me.
I’m on cymbalta and I think it’s helping a bit … That may be an option