Can we have a chat about fibromyalgia?

[mineofuselessinformation]

If you bear to read my essay, I'd really appreciate it....
I've only just been diagnosed, and I'm currently off work as I couldn't cope with the pain and exhaustion I'm feeling. (Hindsight is a wonderful thing as I know now I shouldn't have tried to keep going as long as I did.)
I'm very frightened to be honest, especially as I don't even know if this is a flare or how things are going to be. (My sick note says possible flare).
My current problems are pain, muscles spasms, stiffness, poor sleep and concentration, and exhaustion. (I also have hyper mobility and arthritis - I suspect that's why I've never been diagnosed until now.)
I'm overwhelmed by it all.
I'm also the kind of person who likes to keep busy, so even though I've been pacing myself for years, it's difficult for me to just sit and ignore all of the things I have no energy to do at the moment.
I'd really appreciate hearing how a flare feels for you, and how you deal with day to day life, and especially if you work full time - how on earth do you manage it?
Thanks for reading.

[nicky2512]

Thanks mineofuselessinformation I will do soon. Just sometimes feels like pointless but I definitely will soon.
It’s not nice to hear about others suffering but sometimes it does help to know other people feel the same.

[whatnextdandelions]

Hi I dont have much to offer over and above what the PP have advised, but wanted to say hello. I have had fibro for 18 years, also hypermobile, also some arthritis. It has taken me a long time to come to a new normal, and there have been hideous years in this journey.
I worked in a very stressful role and when I left there, 10 years ago, my fibro reduced enormously.
Now I work from home fulltime (I have taken some office jobs and office based contracting since leaving the big stress job but found although I could do it for a bit, it was not sustainable long term). Working for myself from home is I know, not something everyone can do, but because I can do this, sometimes I am up at working at 4am and then finished early afternoon, other times I dont start till lunchtime. Like an idiot sometimes I do long days and suffer for it afterwards, but at least I have the choice.
I outsource everything I can - ie I have a cleaner and get people in to do DIY etc, and that really helps. I would cut down on all and anything else to keep her, as she is a life saver.
I find naps make it worse - I don't nap but will go to bed really early and get a lot of sleep/rest - I dont sleep that much but my body is resting.
In order to maintain the ability to work I have given up on an evening life - after tea I am done for the day. The kids know there is no point talking to me after about 6pm as I get too dumb.
Getting outside is enormously important. I have missed it for about a week due to knee problems and the fog and fatigue are currently a bit worse than normal. I try to get out every morning first thing, and am usually back before anyone else is up, so its convenient. I go for a walk throuhg fields etc, and that gives me time to wake up, gives me time to think over what is worrying me, and loosens up my body (I wake up soooo stiff).
You mention being busy and not being able to leave things, that is me too. I see the horror of the mess and things I need to do but have trained myself to ignore them in the evening, when I can't think staright and ache too much - these things might take me an hour or two in the evening, and increase my fatigue etc greatly, whereas I can get it all done in 20 mins in the morning, when my brain is sharp and I feel great (having come back in from my lovely walk).
I dont take any meds (I didnt get on with them) but find mindfulness helps, not overdoing it as PP have advised, and also ashwaghanda can help with the spinning mind, it calms me down. I had a friend hypnotise me years ago to assist with being able to sleep, and now I know I will sleep at night, sleep is less elusive, which helps.
I cannot sit at a desk, so have worked out a comfortable alternative work area, that also helps.
Best of luck with it all.

[HeartvsBrain]

Sorry OP, I am too tired and achy at theonent to say much, bit I am 20+ years with Fibro now, and I can tell you one thing I am certain about having had so much contact with other Fibro sufferers, not one of us has exactly thr same experiences, symptoms, or reactions, to any other of our fellow sufferers. So please don't get disheartened of what worls for one person doesn't work for you. You will learn your own limitations and what works for you over time, but this is your journey (sorry for the terminology), and it will be unique to you, but support from fellow suffers is usually a positive, so do join forums that resonate with you. Good luck going forward OP, you will still have plenty of good times ahead 💐 xx

[HeartvsBrain]

Ps. Sorry for all the typos OP, I also have Parkinsons, and together they make writing/typing a nightmare! xx

[mineofuselessinformation]

@whatnextdandelions, I'm still finding out what works for me, and am clueless as to how work will go. I have found though, that even doing one quite small thing wipes me out at the moment. I'm also very stiff in the morning (ankles particularly).
I need to try to go to bed earlier, but have been a night owl for years. It's not helpful to go to bed earlier than I can go to sleep IYSWIM, though as I get too sore to then go to sleep. (I'm just pondering going to bed and reading for a while though, which might help?)

@HeartvsBrain, I'm nowhere near knowing how to help myself if that makes sense? I'm trying - I did a bit of Tai Chi today to get a bit of gentle exercise in, but my knees weren't keen on some of the movements!
Do you have any suggestions as to any groups that help? I've had a brief look, but many of them are email contact only and I'd like to actually speak to someone. (By the way, unless you want to keep going with typing, try dictating instead. I've had to resort to it a bit recently as although it's improved, my fingers don't want to do as they're told at times.)

I was going to ask a question, but for the life of me can't think what it was, so I'll have to come back when I remember!

[mineofuselessinformation]

As, yes, that was it....
Do any of you find your muscles get tired quickly?

[Hallelujah2020]

I’m so sorry that you are struggling and wish I could wave a magic wand for you

I’d love to say that I have all the answers of managing my fibro and arthritis but I still get things that knock me about and that are new symptoms BUT I’m so much better than I was and I have a huge arsenal of self care to try and help myself

Everyone’s fibro is different and I know for me it initially scared me a bit reading other people’s stories but it also made me feel so much less alone

Muscle wise yes definitely they get tired quickly, especially repetitive movements. I have to do a bit and have a rest etc

I find personally that as long as I do a bit and then have a short rest I can then continue

[Adarajames]

I’ve had ME for around 16+ years and fibro for maybe 12 or so (my space / time recollection is really poor, a def symptom!)

I’ve recently tried doing a small amount of work, allowed under the permitted work rule for benefits, but even 15 hours was too much. Am starting a new one currently of only 12 hours over 3 days, and even that is enough to mean I can’t manage anything else really on those 3 days, and can only cope as it’s working from home so I don’t have to use limited energy up in getting up, washed and dressed and out and travelling, also been staying with parents since lockdown and they keep me fed and house stuff done etc, otherwise probably wouldn’t manage even those 12 hours.

I need to rest / sleep far more than I manage, insomnia is a big issue and the more tired I become, the more the insomnia kicks in, not unusual with either ME or fibro. Be VERY careful with suggestions for graded exercise, it’s still one of few things offered as treatment, but much research by those who know / understand ME / fibro shows that not only does it not work in very many cases, it can also have hugely detrimental effects and cause for worse and longer lasting issues.

I take quite a combination of meds to manage at even the reduced level I do, and unfortunately they do start to creep up in dosage over time, abs there is a lack of understanding as to how to medicate it seems, just keep adding other things to the cocktail and hope it doesn’t all crash down on you at any point!

I found naproxen useless, they switched me from diclofenac to naproxen a number of years ago because it was much cheaper, but so ineffective that I ended up self medicating with meds obtained illegally from a friend, so got it switched back and does at least help reduce the pain now, even if nothing ever really stops it.

Rest, rest and more rest is the most important thing especially in the early days. If you push things, then it can last far longer / become far more severe. Don’t push to the point of exhaustion, look at what you think you can manage at any given time, and then do just a fraction of it. People who are driven / no good at sitting around when there are things to do are the people most likely to end up with ME / fibro, one of most important things I took too long to learn was that sometimes things just have to be left u til a later time. Make you own life easier by buying things ready prepared - sometimes even just having ready grated cheese rather than having to do it yourself, can make the difference between making a meal you can then enjoy v being too wrecked to face eating food that took your last ounce of energy to produce.

Think how carefully you’d treat someone you love who has the illness, and then treat yourself like that, as generally we are way too hard on ourselves.

If you can afford it, complementary therapies, especially acupuncture/ reflexology can be really helpful.

[mineofuselessinformation]

Sorry I've been away from the thread, and thank you for the replies.
I'm not feeling any better, really. Marginally more energy but I'm being very careful, whilst trying to do a little to keep me moving (and the house clean!)
I've had a real struggle to get a review as I don't think my medication is helping much.
After three e-requests and crying down to phone to a receptionist (and explaining to her how difficult it is for me to type anything of length), I then got a telephone appointment with a practitioner. He told me to up the amytriptyline to 25 mg for a week and then double to 50mg if no better??? (I understand why patients are started on low doses, but the 50mg is five times thb dose I started on. )