Ideas or advice for coping?

General
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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?

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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:

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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?

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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:

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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:

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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.

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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?

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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.

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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

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Like you, in the early years of dealing and coping with fibro, I refused to let it get me down. I was very active and athletic and always on the go. So the whole exercise thing that the medical community states is a crock. Meds didn’t work; physical therapy was a waste of time; and massage therapy kicked my butt, and took a few days to recover from it.

Now 30 years later I’m worse than ever and at the end of my rope. Can’t hold a job, can’t get disability, and if my boyfriend didn’t pay for my household bills, I would be in the grave. I have about a 2 hour window where I can get simple things done like: washing the dishes, cooking my dinner, or doing a load of laundry. By the end of each night, every night, the only thing I can do is cry myself to sleep; that is when I can sleep.

Did you ever suffer from a head or spine injury?
Do you have anything wrong with your spine or head now? I would like to speech with you longer, but I don’t want to overwhelm you.

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No spinal injuries - though I am guilty of lifting and moving furniture, feed, hay bales and many other things which I should not have been doing by myself; often because there was no one else to do it.

The only head injury (other than the odd concussion or two maybe) would be a skull fracture when I was not yet 2 months old (a baby bouncy seat I was in collapsed toppling itself and me off the counter and onto the floor). As a child I suffered from seizures, which they assume were the result of that skull fracture. They said I would outgrow them at some point and I did when I was in high school (nearly 30 years ago).

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StrugglinginKs,

The reason I asked those questions is the more people I’ve spoken to, the more I’ve been seeing a pattern of past head or spinal injuries. I’ve had both; in fact I was born with a tumor on the left side of my head, and that is the side of my body where it hurts the most. I didn’t walk until I was 3; had to wear Forest Gump shoes, but soon after, my brother pushed me into a door jam and my head split open. Fell out of a window onto my back (pre teens), been whiplashed on more than one occasion, and a few car crashes that involved my back. This all happened when I was growing up. Thanks for getting back to me about those questions.

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This reminded me - I have had 2 car accidents. The first I was in high school still, a passenger, wearing my seatbelt, but was still tossed around. I slammed into my door at least once, head hit the window at least once as well. Was soon after this that I suddenly started having trouble with my eyes when reading and first got reading glasses. I always felt the two were related, though the eye doctor said no.

The second accident was shortly before (maybe within a year?) I started having trouble with the muscle/joint pain, fatigue, and all the rest. I was stopped at a red light and was rear-ended by another vehicle - they were not paying attention and never touched the brakes - hit me doing around 40. I was wearing my seatbelt this time as well. I wasn’t tossed around so much but, with direct impact from behind, I was thrown forward and I ended up with whiplash.

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Twanya,

FYI: Did you know that the “founding fathers” of modern medicine were butchers and barbers? From the way I’ve been treated during the past 30 years, I think I got their distant cousins. I believe if enough of us rally together, create petitions, protests to who knows who, something to really get people awareness that we’re not some butt end of some bad joke, we may spark something better for us than what we are dealing with now. Maybe we could reach out to Lady GaGa (not sure about spelling there) to be our spokesperson for our cause; she is well know, but I’m not sure how many people know that she too has fibromyalgia, and how there’s been times when she had to cancel her tours due to this illness. If not her, someone famous and respected to be our voice. I just feel like we are the forgotten and lost, were we don’t matter. But we have hopes and dreams and wish we could live a life pain free. To tell you the truth; I feel like I’m dying and no one hears me, believes me, or care. I live alone and sometimes I don’t have any contact with another person for months, I could be dead and no one would know it. I’m living in North Dakota now, and the health care is no better than it was for me when I lived in Michigan. Not sure what to do with out support or who I should write, get in their faces and say “WE ARE HERE.” help us. Well going to stop venting now, and if you can sift out my negativity and just see my suggestions, what do you think?

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Love the idea of Lady GaGa as a spokesperson! Phil Mickelson has done the profile of Psoriatic Arthritis all kinds of good.

And a darned good get-it-out rant is therapeutic for everyone, as long as it ends, and everyone then gives their head a shake and moves on. It does us all good to know we aren’t the only ones who sometimes feel down and miserable. That’s the beauty of Ben’s Friends.

Seenie

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Hi all! I don’t actually have anything to add but I wanted to say how much I appreciated the conversation and how much I got out of your posts.
I have been dealing with an autoimmune for years but Fibro has developed on top of it. Quite frankly, the Fibro is causing me more trouble than the autommune. It helps to hear what you are feeling and so on. A lot.

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Drs. Can help us some but we need to study self help with fibro…my fibro tool box is full… and i just know during a flare that i can find a way for relief…

I wrote up some suggestions in another convo here…in a newer thread

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oh my goodness for a moment I thought you were telling my story (at least in part), lol. I’m also a headstrong, do it all, workerbee from Missouri. I was diagnosed in 2001 but like you I pushed through it (in agony mind you) for years. then , like you I began to modify activities and work before everything finally came to a screeching halt. (There’s so much more to my medical story.) But I lived in denial of my diagnosis for as long as possible and my focus was on other lived ones medical matters which is why I’m only now beginning my acceptance and grieving process. I can relate to the way you feel in that respect. I’ve always been one who finds the silver lining to every situation, but I’ll admit I have days that grieving the person I used to be consumed me and I feel completely robbed of everything I’d hoped my future would hold. I’m working VERY hard not to let this be a daily occurrence but like you I struggle to remain positive. but if there’s anyone that knows how to improvise to improve a situation or problem it’s a Missouri mule so I have faith we’ll both find our ways. gentle hugs to you!

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I love the description of the road journey. I’ve been struggling with the same issues lately, but this is actually a very positive way to look at it. We (humans) like things to be linear - start = bad, get help, problem solved, but no form of grief works that way, which is a challenge.
I know you mentioned heat rubs were not much help, I’ve found two through a friend that I can use regularly and have found helpful- Metsal (must the the pain relief cream, which has no menthol and doesn’t burn my skin) and tiger balm- the white one (as long as I have vaseline on underneath, so it doesn’t burn me) actually provide some relief. I’m not sure if these are among those you’ve already tried (I’d tried heaps too), but another option often helps.