Can we make a Fibromyalgia support thread 🙏 ✨️ ❤️

[sunshineandkindle]

Hello I've been recently diagnosed wi4h fibromyalgia and hypermobility and looking for other people in a similar boat.
I'm not on Facebook so can't join a Facebook group.
Anyone else around here with fibromyalgia that would like to start a thread for support?

I was diagnosed about 3 months ago so still feeling my way and learning about it.

I am about to start semi-daily swimming - more bobbing about really- in the hope that I can relax muscles. My GP is not interested so I have not been prescribed any medications so am using just over the counter anti inflammatory drugs when I have a flare.

I also have arthritis and bursitis so am in pain all the time from that as well.

best of luck @sunshineandkindle . It's an awful condition.

Thank you for your reply! Do you take any supplements? I waa told to do pilates but the thought gives me dread as I have no strength and everything hurts!

I take magnesium (children version as my DS also takes it). I also take B12 but that is because I also have pernicious anaemia. Otherwise no.

I have also bought a book by Dr Ginevra Lipton who is a doctor specialising in fibro and who has it herself. I found it very information dense and am reading it a second time to try and get it all. It's not that engaging to be honest!

I'm super tired and normally would have had a nap on the sofa but I'm trying my best not to. Do you need to have a sleep in the day?

Just woken up from mine.

If I am not working I sleep every afternoon for a good hour or so. I can't get through the evening otherwise (and I am an in-bed-by 8.30 person anyway).

I had a good five years of going back and forth to the GGP pretty much begging for help and support as i had no idea why I was so ill. It was a relief to finally know what was going on. But then i went through a real angry stage at how debilitating and life limiting this is. I have gone from working full time in a professional role (which tbf I hated) to dropping a day to dropping two to becoming less than part time as I can barely function.

It's just so tough.

I've bought magnesium and zinc supplement and tiger balm as had a little look on line. I've been told to do pilafes but my wrists are very weak and my shoulders are very painful so I don't know how successful I will be. Would u say it has gotten worse then?

Edited as first post I did only included the first half!

Hi can I join? I was diagnosed 4 months or so ago and came here first to get advice but was put off because so many people were saying it was a made up disease it made me feel rubbish honestly. So I really appreciate this thread.

I am trying to go medication-free as I don’t like taking meds but it’s proving difficult.

My biggest symptoms were pain and brain fog but now they are distant compared to the exhaustion! I get so tired that at the end of the day and when I wake up I feel like I’m coming down with a virus then I have a coffee or nap and then feel a bit better. I work full time in the NHS but having to use a lot of holiday so I can have more long weekends. I really want to go part time but that’s a big step for me financially and also the huge commitment I feel to work. But I also suffer with life long depression and anxiety and feel I can’t go on much longer like this.

Anyway that’s enough from me! Glad to be part of this.

Hi all. Im trying to remember how long ago I was diagnosed. It's been at least 15 years at this point, possibly longer I actually dont know. But I have had fibro for 24 years at this point. I hate it. I hate that I am treated like I am lazy and making it up too

I was diagnosed with fibro approx 12 years ago. It's so debilitating. I have a lot of nerve pain with it. I went back to work earlier this year and am permanently exhausted. The worst thing is I can't get to sleep at night because of the pain so wake up tired, go to work and come home feeling worse. I am on meds for it, which helped initially but working full-time is making the pain worse. I also have chronic back pain so am in constant pain, which causes more exhaustion. It's an endless cycle.

Hello everyone! Nice to "meet you" 😊 I've got dreadful hand and wrist pain atm, jelly legs, struggling with stairs and napping around 3 hours a day on my days off. I also work 12 hour days in the NHS! I was diagnosed 3 weeks ago but been living with widespread pain for years.

It really is a cycle. And add in other conditions etc and it makes it even harder

Hi 👋 sorry to hear you’re all in this invisible illness club- it’s rubbish isn’t it! I have been diagnosed about 10 years with Fibromyalgia. I’ve had some times where it seems to have improved and allowed me to function more but this year has been hell due to stress and its impact on my Fibromyalgia ,
A few things that may help although everyone is different- the dreaded exercise, I don’t mean HIIT but I’ve found Pilates, swimming and walking useful to help stiffness admittedly restarting Pilates has left me drained and in lots of pain for days afterwards. However, I know that in the end it’s worth it and will help me build my stamina in the long run. It’s so so hard and scary as you know it will leave you in a flare but eventually it does help. But it’s definitely about starting slowly and gradually increasing and not pushing yourself to the maximum and also trying to ensure there is time afterwards you can schedule in some naps!
Supplements- magnesium, vitamin D + K2, vitamin c, vitamin B12
i am looking into trying ear seeding? Can let you know how that goes!
medication- antidepressants, amitriptaline, pain killers- doesn’t stop the pain but makes it possible to function

I also work in the NHS @sunshineandkindle and have recently negotiated an adjusted work pattern to allow shorter shifts (which isn’t usual
practice in my area) because Fibromyalgia is classed as a disability and therefore a protected characteristic under the Equality Act 2010. It might be worth an Occupational Health referral and discussion regarding reasonable adjustments to make life a little easier to pace.

Best of Luck x

I was diagnosed around 10 years ago after about 3 years of tests which apparently excluded any other illness. I’ve also got peripheral neuropathy and CRPS.

It’s a hateful diagnosis, which you will unfortunately find out, as literally everything will be written off as being due to your fibromyalgia. Migraines? Fibro. Gastro issues? Fibro. Actual compressed discs in your neck causing excruciating pain? Yeah we’re not touching that because fibro.

My symptoms have been marginally controlled (after a lot of trial and error) by a combination of buprenorphine patches and amitriptyline but recently I’ve had a lot more pain. I phoned my GP for a referral back to rheumatology only to be told that they don’t see fibro patients any more as it’s a chronic illness and they can’t do anything. Back to banging my head against a brick wall then!

hi everyone!
I was diagnosed last April after about 6 years of going back and forth to the doctor with exhaustion and pain. I think (eventually) I was quite lucky as I was prescribed Amitriptyline straight away and given an appointment to see a practitioner who specialises in fibro and is part of the pain management team.

As said above, my biggest fear is that anything that comes along now will be put down to fibro.

One thing that has, very unexpectedly, helped is taking mounjaro, for weight loss. I know this is controversial but I had weight to lose and tried it. It’s also an anti inflammatory and after about 3 months I started to noticed I was in less pain. Definitely not all gone, but better. I’m sure losing the weight has helped as well.

Reformer Pilates helped me, but I go to a class with a teacher who has a rehab qualification.
Some days I can do the whole class just like anyone else other days I have to have lower weights or switch to hand held weights for my shoulders. I am better than I was a year ago, but sometimes if I am having a flare like I am now I loose all strength in my shoulders and we adapt the exercises so they work for my strength level.
I have changed my job which has helped too, but currently work is really good - probably the best ever, but my shoulders are really bad I feel as though I have no strength and constant pain. So not certain if this immunemediated arthritis flare or fibro.
i did see IPASS, but the person I saw was obsessed with cold water therapy, but I have some Reynads type symptoms so the cold is awful for me. I said that heat was actually better ( when I work in Thailand for 2 weeks each year I am at my best), but she kept banging on about the cold water therapy,

Hi.
Was dx’d about 6 months ago.
But it was like was like walking barefoot on broken glass while chewing on broken glass just to get the doctor to pay attention.
Sort of like leading a horse, if you will.
I’d dx’d myself ages ago by process of elimination and dogged determination.
So anyhow, I take an Rx called Flexeril and it helps - occasionally.
I hurt all over, but mostly in my neck and shoulders and it radiates down my spine.
Many headaches.
I just try to rise above it all.
I don’t let it spoil my sunny disposition haha.

Could I please join?

Are you in the UK, @FlatWhiteExtraHot?
Because that sucks.
And it sounds as though you’ve got the shittiest doctor wherever you are if he’s telling you that, wow.
I’m very sorry you have migraines - my mum had them & I watched her suffer for years & years.
I have tension headaches - still awful but nothing compares to migraines and at least I have something I can take for them.
My doc & I just came to the Fibro conclusion after a series of conversations, where we eliminated everything else. I wasn’t even aware that you could be tested for Fibro.
Then again, I live in a backwater.
This is none of my never mind, but I think you deserve far better treatment than what you’ve been receiving. ❤️

Hello all. This is a very good idea starting this thread op. I was diagnosed with Fibromyalgia/ Chronic Fatigue Syndrome last month. I am actually relieved to have a name as I thought I was going bonkers. I am also feeling sad,angry and abit sorry for myself and family. I expect these feelings will fluctuate. I have been offered medication,one of which is Duloxetine but am staying away from meds as I already have monthly injection for migraine and have B12 etc.I have vestibular/ chronic migraines and chronic back and neck issues/ pain too. Really hard to plan anything and exercise is tricky. I do some stretches for back but am hit and miss re any other forms of exercise. I am sorry we are on here but very glad to 'meet' you all.

Good morning all.Hoping we all have a decent day! I have just had a cup of tea,brought to me in bed,which is luxury and am waiting until bathroom is free then I will get up! 'Quick whinge alert'....everything is hurting..even my little toes! Take care all. Hopefully we will pop in and out of this thread when we can.

A few years ago, one of my friends asked me what having fibromyalgia feels like. Amongst other things I said it's like having permanent flu, your body aches most days and the pain keeps you in an exhausting state of vigilance. And when you get a cold or virus - and there's always something going around! - it just adds to the existing rubbishness of how you already feel every day.

Yesterday was a write-off. I barely got out of bed and could do little else but watch TV and sleep. I'm tempted to list every bit of me that hurt, or the flaring up of other stuff that just added to the general grimness, but that's probably even more boring to read than it is to write! 😬 Today there's a little crack in the clouds and I think I might be able to manage a bit of shopping, so I'm thankful and hope to make the most of a patch of respite. And try not to dwell on the thought that it will be all too brief.

Wishing everyone on the thread, and anyone else reading, something good today 🌻

That's a good description of fibro.

I keep hearing from health professionals that 'fibro isn't degenerative'. Well I know that's not true. I recently tried to do a 5 day temp full time job and I could not manage it. A year ago I could have limped through it. 2 years ago I could have done several weeks in a row.

I was talking with someone who also has fibro, and I said the pain is one thing. I'm in pain all the time anyway due to decades of back issues and bulging discs. I can basically cope with the pain- it's the fatigue that is the killer. I'm really only good until about noon then my body shuts down.

No diagnosis but wondering if I have it.

As well as the FATIGUE (in capitals because otherwise it just looks too small a word!), I also have:

1. Evenings where I feel like I’m coming down with flu, but wake the next day and it’s gone - shivers, body aches, slight temperature, headache. This is probably 3 nights a week.
2. Waking in the morning with stiff joints and aches and pains
3. Skin that feels bruised - even poking it hurts. My kids throwing themselves into me elbow first is agony
4. Seeing stars when I stand up
5. Despite a good diet and vitamins my hair is snapping and my nails peeling. Skin is good but hair and nails just seem to be giving up

Does anyone recognise the above please?

I recognise all the above. The stars when getting up and feeling dizzy. I have had recurring 'vertigo' for a decade now but actually feel it's related to fibro. I have to stand very carefully.

Plus the painful skin. I have a friend who every time she sees me draws me into a hug. The pressure actually caused me incredible pain and I feel like I will be bruised. I don't really have it with others (she's about the only one who hugs though). I feel like her fingers are talons stabbing me deep into the muscle.

My hair is falling out also.

One thing though (in case it helps anyone else) - since september 1 I have been vegetarian and I have had an easing of the pain and stiffness in the joints. I have not had any muscle spasms since then- and i used to have hand spasms a couple of times a week. This week I ate a chicken stir fry for the first time and the next day was stiff and in incredible pain. I have been doing a little research into inflammation and meat eating and there does seem to be link in people who might be sensitive to meat proteins. I started being veg not because of fibro- but because DH has been vegetarian since 2018 and he is the healthiest person I know and I thought I might give it a go.