New here - from England

[Tatty]

Hi. I have suffered with so many symptoms over the years and was diagnosed with fibromyalgia last year. I have only seen my doctor as it does not seem that they refer to specialists any more? I have quite severe mental health illness at times, which does impact on my fibromyalgia but I think the doctors are just seeing the physical challenges, are as a result of this. I know there is not a miracle cure but I feel a bit frustrated that it doesn't seem to be taken seriously.
I try to be positive and do not want to moan and I find myself not sharing how difficult day to day can be. I feel like a child trying to persuade or validate how I feel.
I am very lucky that I have a supportive husband and adult children. It will be really helpful to read other peoples stories and not feel as isolated

 

[sunkacola]

Hi Tatty, and welcome to the forum. You can moan here if you want to, or if it is helpful to you. We even have a special section for that.

You are indeed exceptionally lucky to have supportive partner and family, as it seems most people with fibro do not.
Still, you can feel alone even in a supportive atmosphere when you have things going on that the others do not, and maybe that is where this forum can help.

You are right that there's no cure -- miracle or otherwise -- for fibromyalgia. But there are lot of things that you can do for yourself without the help of doctors, and that may very well result in reduction of severity and frequency of symptoms. I wrote a post about that, and suggest you check it out.

Don't be afraid to talk about what you are going through here, and to talk about your mental health issues as well. This is a safe space where people will not be hard on you. I have had chronic depression almost my entire life, and many of us here deal with that and other issues. I personally don't see any benefit to people speculating about cause and effect when it comes to mental health issues and fibro, although it is well known that stress exacerbates fibro symptoms, so if anxiety is a factor it does seem to help most people if they can get a handle on that, using medication or whatever helps.

Ask any questions you have, and know that we are here to help.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[Tatty]

Thankyou, sunkacola for your welcome. I have just read through your past post and feel really positive to know I am already doing some of your suggestions. I will definitely be looking at some more. It us very true that we are our best advocates and something I need to remind myself.
With my mental health I am often told yo try and not be so hard on myself and your post is a good reminder for me to step back and allow that self kindness.
Thank you!

 

[SweetWithSour]

good reminder for me to step back and allow that self kindness

Hi Tatty welcome! You are among many who very much understand and can relate to your journey. You are not alone!

Keep practicing self kindness, compassion and love! Comparing ourselves to others is using an unfair and unrealistic measuring tape. I doing so, we at times feel not enough. We don't offer ourselves the kindness, compassion and grace we allow for others. Always know YOU ARE ENOUGH. You choose your journey and at the rate you move through it. You absolutely are enough, worth and worthy of it!!!!!

 

[Tatty]

Thank-you. It can be very difficult to find the energy & motivation at times, as I am sure many people will understand. I do try and use mindfulness to help me through those more difficult time. I remind myself how lucky I am to have my adult children & family. There are days when that has been hard but I think forums such as these are so helpful.
Today is sunny and autumn warm, my small dog is jumping around and making me smile. It's remembering the smaller things count so much.

 

[sunkacola]

It's remembering the smaller things count so much.

I have had a practice for many years, of grabbing the tiniest things and reveling in them. Even 5 seconds of feeling pleased with something small matters, even if that's the only 5 seconds I get to feel good or to laugh or even just to have a lightness in the dark in a whole day. On a lucky day, there may be 4 or 5 of those 5 second periods of time, but you never know when the next one will come, so I don't ever miss one.

 

[JayCS]

I have only seen my doctor as it does not seem that they refer to specialists any more?

Yeah, that's the NHS, I spose. Interesting how the 2022 UK guidelines (rcplondon) have been based on the 2016 ACR criteria (FMA UK) but omitting their bit about having to exclude everything else and it still possibly being fibromyalgia even if it is something else too ... A sharp tongue might say that's to save money...

On a lucky day, there may be 4 or 5 of those 5 second periods of time, but you never know when the next one will come, so I don't ever miss one.

Yeah, I also find it's good to pounce on these seconds and hold them up to the light.

Celebrating them can regularly throughout the day and the next days can make them into minutes, e.g. by writing them down in a happiness diary and re-reading, talking about them etc. In my fibro blog entry yesterday I had so much I divided up my "reasons to be cheerful" into plant life, bird life, animal life, plant/bird/animal life and human life - 2 rare goldfinches feeding on my evening primrose seeds for half an hour despite rain, a buzzard sitting together with a jackdaw (why??) on the roof opposite my window for 5 minutes when I looked to the early sun, my wife coming home elated and overexcited last night after she'd been to a musical theatre, altho she's got so much to be sad about at the moment... (There, that's an example where happy and sad are mixed, and the buzzard is a bit scary for my feathery friends too which is often enough, and what I do for mixed situations is write it down so the happy or content bit comes to the fore.) I'll be trying to keep up that 5-fold division and maybe add further prompts. Prompt to praps remember, not pressure.

I also make sure I don't just wait for them to crop up, I create them. Like making sure I play table tennis almost every day, even if I can't move or talk much (which is most days) and it's only 10 minutes - but laugh I can, and those laughs change my body and my days. I think 'those funny table tennis moments' should be on there every day.

Also, anything can be beautiful for me. If I want a second of beauty, I turn the eye of the beholder on to it, et voilà. It can be a colour, a pet, something can be beautiful because it's familiar and close (like my wife), or because it's rare and exciting (like the buzzard, or just a new mushroom type in the garden grass this morning), or because it was familiar, but got lost and is now found and sort of new again - I so love the sparkling green moss in the garden and have missed it in the summer, but now it's coming up again, and a blackbird has ripped up a beautiful patch of it to find insects and I'm only slightly irritated now I've realized he needs it for food and so I patiently patch it up so he can rip it up again and perhaps find something delightful under it.

 

[sunkacola]

Also, anything can be beautiful for me. If I want a second of beauty, I turn the eye of the beholder on to it, et voilà.

 

[Tatty]

I am surrounded by hills and today the clouds looked as though they were bouncing across them. There has been a clear sky and I could see for miles. My imagination often saves me from a dark place, or when the pain is bad I can think about the history of life that has taken place around me.
Those seconds and minutes are worth it to imagine what I might do when I feel a little better - not thinking about what I've been unable to achieve.
I have watched some squirrels scurrying across the leaves and busily preparing for winter. It's about taking time to stop and notice life and remain present within it.

 

[JayCS]

I am surrounded by hills and today the clouds looked as though they were bouncing across them. There has been a clear sky and I could see for miles. My imagination often saves me from a dark place, or when the pain is bad I can think about the history of life that has taken place around me.
Those seconds and minutes are worth it to imagine what I might do when I feel a little better - not thinking about what I've been unable to achieve.
I have watched some squirrels scurrying across the leaves and busily preparing for winter. It's about taking time to stop and notice life and remain present within it.

Lovely!
"What I might do when I feel a little better" can help endure and get out of a flare,
and help grieve for and let go of our old life and embrace and motivate for the new.

Adding a few further thoughts...

I don't have to wait till I feel a little better tho:
whether in a backlash or flare or better, I'm always full of simple plans what I want to do next, in any moment there will be 3 or 4 things I want to and can do, and 100s on the list and I keep imagining how it'll feel when I've got them done, but of course something else crops up which is even more fun.
So I can leave out the "when" bit, in case it pulls me down, whilst "what I might do" alone pulls me up.

May sound really weird, but the part of me that wants to do my many resting activities, mainly online, actually looks forward to the next backlash, cos it justifies me not having to 'do' anything except write, research garden plants, supps, to make the next plans. That's life anyway, getting the balance right between doing and resting. And this is the first time in my life where I've learnt to enjoy resting. Cos resting to me often meant boredom or facing depressing or fearful thoughts or not being able to justify my existence. (Now I can embrace more clearly that I am justified to rest and just enjoy.)

So - there's always something nice I can think of to do in the future.
In the special moments themselves however, I usually don't imagine the future just as little as the past. That's like how you brilliantly express it at the end "be present within it" - also meaning being present in the present, rather than in the past and/or future. And that's cos in my long experience with anxiety it's the films in my head of the past and the future which make everything so tough. And once I imagine the future, I'm comparing it with the present, and once I'm comparing it's hard to prevent images of the past from coming up, even if I try not to actively compare.

Another way of extending those special moments is the "artificial" one of photos and films. Artificial maybe, but also art. Photos of people don't work for me, maybe cos they take me into the past, away from the here and now. But my photos and films of the plants and wildlife in my garden now help me create many special moments out of one, a new one to me I started with the gardening last winter. Because I look more intensely, look for new perspectives on a blossom for instance. The camera can blow up even the 2mm blossom of a veronica/speedwell hidden in the grass, or one that is face down which I can't get under myself, so I can get a better and more wondrous glimpse of the reality in front of me. Then identify them with a tool helps me "know" them and being able to name is part of 'making happiness' - "taming", as the fox in The Little Prince says ("establishing ties"). To be truly wondrous for me they have to be my own plants, others can't give quite the same happiness. Although sharing, taking part, is another bit of it - secondary bonding I spose? The photo allows me to gaze longer and more often than my body and the weather does. And rouses the desire and helps to take a better look next time, so a roundabout back to "reality".

 

[Tatty]

Thank you - and I have a lovely vision of your garden and wildlife. This is such a pretty time of year, the field have changed from green to golden, and now brown with specks of gold. Trees are yellow, orange, red & green. I often think that colours are so important in life and help us to feel relaxed, warm and/or safe.

I love the idea of taking extra time to get to 'know' & 'understand ' those things important to us. Also, to remember this can be achieved without significant bounds of energy.

The being present in life can be so important but frustrating. However, those in the moment feelings remind me not to have regret but focus on what I have, and can achieve.

 

[Catre]

Hi Tatty, I'm same as you I have a supportive husband and grown children. We're you diagnosed with anything else besides fm? I was diagnosed with osteoarthritis arthritis then spinal disease few years later fm and my nhs specialist told me thats probably why I have fm. Osteo is related to fm some how. Not sure how though. So I'm wondering what your experience is.

 

[sunkacola]

Osteo is related to fm some how.

There's no relation, causation, or correlation between these two things.

Not to say that lots of people don't have both, as many do. Often, people with fibro will also have other things going on, such as ME/CFS, or arthritis (both kinds), or degenerative discs or carpal tunnel syndrome and so on. In fact, many of us on this forum including myself have other things going on that have been --separately-- diagnosed. But having one doesn't make a person more likely to have the other, and there is no direct relation between them.

 

[Tatty]

Hi there. Mine started after post natal depression 25 years ago, and the 10 years after being hospitalised with pneumonia. Much of the past 20years my pain had been linked to everything else going on but last year my gp said he would diagnose fibromyalgia. I've had more severe flare ups at times of trauma but the last 6 months have been very difficult due to the pain. I had some blood tests taken yesterday to rule out any changes. I have a relative who has recently been diagnosed with an autoimmune disease as well as fibro.

Its very hard to say why or how things have started. It has been difficult to get any kind of diagnosis over the years or any worthwhile discussion within health services. I'm hopeful this is now beginning to change

 

[sunkacola]

my pain had been linked to everything else going on but last year my gp said he would diagnose fibromyalgia

Many people started having the pain after a traumatic event, whether physical or psychological, and some have developed it after having a serious illness, especially if they had a high fever. There is some indication, although not proof, that having long covid could eventually lead to fibromyalgia.

Statistically, many people with fibro have had either a traumatic childhood or other serious traumatic events in their lives, but it is not known if that is causative. Having had a life of very high stress for years, whether from PTSD or other forces in life, is often found to have preceded fibromyalgia, and some think it is causative, which to me makes a lot of sense even if it has not been scientifically proven, because stress seriously exacerbates fibro symptoms in every person who has fibro. (At least I've never heard anyone say that being under stress does not exacerbate their symptoms).

Its very hard to say why or how things have started. It has been difficult to get any kind of diagnosis over the years or any worthwhile discussion within health services. I'm hopeful this is now beginning to change

It seems to be very common for people with fibro to have this experience. Getting the diagnosis is usually very hard and takes a long time and often a person has to go through a lot of people who are dismissive or say rude and untrue things, like suggesting the person is making it up. Like you, I hope very much that this may be changing.

Hang in there, Tatty. We are all here to support each other and I know that sometimes I need that support as well. Just knowing I am not alone is helpful, although I wish that none of us had to deal with this.