Fibromyalgia defeat / acceptance/ fight

[Victoriawould24]

I was diagnosed with fibromyalgia 2 years ago and am on amytriptylene and 20mg of duoloxitine and paracetamol.
I work full time but have adjustments at work when I need them and I also have caring responsibilities for two elderly relatives.

I am really struggling at the moment with ‘managing’ my symptoms.
Any sort of activity leaves me feeling in a fog and pain for days afterwards and I feel like it’s getting worse but what I want to know is am I supposed to stop doing activities and leading a well rounded life or am I supposed to push through and accept the consequences.
I have had no support or guidance from the doctor and don’t feel I need to go back to the rheumatologist just for general advice but I feel so alone with it.
I absolutely hate telling anyone how I am feeling physically, I feel like a broken record or as if I’m being dramatic/lazy/moaning,like I’m not that person I’m the one that helps everyone else and fixes things.
I don’t want to be a burden or a fun sponge or for this illness to be my entire personality.

I would just welcome any one else’s experience or advice.

Thanks

Hi I’ve had fibromyalgia for ten years. It’s advisable to do things, but pace yourself. I wouldn’t go shopping or site seeing on holiday all day without a rest in the middle of the day. If I’m going away for the weekend I book the Monday off work to recover. You unfortunately do have to limit what you do to avoid flare ups. I don’t clean the whole house in one go. I do one room at a time and DH vacuums. I never go out after work because I can’t. I get exhausted.

It is unfortunately very debilitating. There are groups you can join for support and to meet others who understand what it’s like. There are quite a few on Facebook and I’m also a member of a local one where they meet in person.

I do small spates of exercise a day. At the very least a half hour walk. Keep moving. I do a lot of leg exercises to strengthen the muscles. As I get older I get worried about losing mobility.

And vitamins do make a difference to energy and brain fog. I take b complex, D, cod liver oil and sometimes zinc. Things like hot water bottles and heated throws can really help.

I’m sorry you have it too.

@Vestusthankyou for your response, I did join a FB group but it was just silly reposted memes and things rather than real people commenting so I left.

I use UK Fibromyalgia Private Group on Facebook if that’s any help. I find it helpful. It takes a while to accept your situation I think. Have you been referred to Pain Clinic? They vary but can be useful to learn about coping.

I haven’t but I have asked for a medication review so will mention it then, I will join that group Thankyou.

If you scroll down in the Chronicle Pain category there is a post about Fibromyalgia support.

Learning to pace myself is the best thing I've done with regard to fibro. I'm in my 42nd year of it after having glandular fever aged 12. I did a pain management course in 2009 (I'm in Ireland) which really helped, they taught me to accept the disease and work around it, unfortunately I was medically retired in my 30's when even walking a short distance was extremely difficult, thankfully I haven't been that bad in years. I am prescribed oxycontin and oxynorm which does really help, I've been through all the usual medication with no success. Do not 'push through', thats what I used to do and it was destroying me, learn to take the breaks you need, rest as required, live life a bit different to others. I joined a support group about 20 years ago and left after two meetings, it was full of people trying to out do each other with how difficult life was for them, definitely wasn't for me. Have you got family support? I will always be grateful to my wonderful parents who never ever doubted there was something wrong right back to the 80's, I was lucky to meet my husband who has been my absolute rock and can tell when I'm getting a flare up even before I realise.

Hi, OP. I’m so sorry you’re struggling with this awful illness.

I was diagnosed in 2017, and I’m also riddled with arthritis. It’s taken me a while, but I’ve now accepted that it is a life-changing condition and my life has to be different to how it used to be, how I expected it to turn out.

I find ‘pushing through’ just doesn’t work for me. It makes everything worse and it takes longer to recover. I’ve had to decide what to prioritise. My main worry, initially, was letting other people down and I still don’t like to, but I know I just can’t help it at times. I try to rest in the days before an outing, but it doesn’t always work out. I feel like an airhead most days because of the pain and the side effects of my medications! I can’t be as house proud as I used to be. I can’t work any more, and worry people are thinking I’m just lazy. Even though I know I can’t help all these things.

I get what you mean about not wanting to become all about your Fibromyalgia, but it is a big part of you now. Try a few different coping strategies to see if anything works for you. Figure out if there’s anything you can stop doing, or reduce the time & effort you spend on different responsibilities & tasks. Are there any disability aids you could use around the house or workplace to make life a bit easier? Have you had an occupational health assessment at work to see if there’s anything your employer can do to help? Have you seen an occupational therapy nurse at your hospital? I found they were a great help,

The best advice I was given is to listen to your body, learn to recognise the signs a flare up is coming. Rest when you need to.

Thankyou for sharing your experiences @Mudflapsand @MaidOfSteel
I do have close family but I think you have hit the nail on the head about not wanting to let people down.
Being a fixer is built into my dna (years as a loan parent etc) and I need to relearn my default settings.
I think it’s possible that I have some internalised negativity towards my own diagnosis due to my past line of work and fibromyalgia being used as an opt out for certain people, I need to work on that too.
I will talk to my DH and think that his support in saying no to things will be a game changer (he does try and do this already but I fight it)
My work have been brilliant, I have a support plan and mostly work from home to my own pace.

I am going to ask for referral to a pain clinic, I also have arthritis but not currently on any medication for that.
I have also joined a support group on FB.
I really needed to hear your words- Thankyou ❤️.

I am in the middle of a flare up exacerbated by stress I think and so yesterday I logged off from work for a few hours and slept- then I thought ‘ I feel a bit better maybe I should cut the grass/ do some laundry/ log back on and finish some work.
I need to stop that and accept resting is vital to me.