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?

A cautionary tale.

I have had much pain, and many weird symptoms for years.

Dr suggested that I had Fibromyalgia- gave me prescriptions for omeprazole, naproxen, and citalopram.

Its not Fibromyalgia at all- it’s an autoimmune disease which bashes my thyroid, making it underactive.

Hi all 👋 I was diagnosed with fibro about 9 years ago! Hate it 😭 the biggest thing that helped me was acupuncture - if this is an option for you I highly recommend it. Now I try to keep flare ups at bay with walking (5k per day x 5 days a week) - it definitely helps. Particularly for the leg pain; mostly for me it’s hips, knees and balls of feet so the walking eases that a lot. I also take a glass of aloe Vera juice every morning on an empty stomach and that helps (not sure how - only know that when I can’t get any I usually get a flare up). I also have rosacea and alopecia areata so whenever I get a fibro flare chunks of my hair fall out and my skin goes to shit 😭

Same. I had to give up my job 10 years ago, and I haven’t been able to work since.

@LemaxObsessive I’ve been on the seven day patches for about 8 years. I’d be interested to know if/how the four day one differ.

100% my fibro started post-covid. I have said it to every medical person or specialist i have seen.

I did see a private GP (before I was diagnosed with fibro by a rheumatologist) due to a number of the synptoms. She said that anecdotally she and her colleagues were seeing ALOT of issues post covid that they are convinced are related- food allergies and intolerances for example. She said she had a 50 year old man who had never had a food allergy in his life who suddenly developed anaphylaxis to wheat- he had a sip of beer and collapsed and was blue lighted to hospital. Had no idea. Released a few days later had another beer and collapse. She told me there are rumblings among her peers about really odd, unusual and unexpected illnesses in people that date from covid, but have not been identified as being covid-related (yet).

I don't have a choice.
I have spent two days in bed after a few shift but money us a thing.

Today i have a meeting with my manager to discuss if I want to go part time. I feel guilty about the loss of income if I do decide. We would be ok but it's still alot of money lost per month.
I also feel lazy.
Please help me make a decision! I am a nurse and work 12.5 hour shifts and had quite abit of odd sick days due to exhaustion and pain.

If you go part time you could if you want add a shift or two? I work 8 hours as a nurse. 12.5 wouldn't be an option at all.

Ive had FM since I was a child, but only got diagnosed at about 35. Im now 50 and have got, from a point of not being able to work, to working full time with 3 kids.

I'm a healthcare professional
And as part of my work end up supporting many people with FM and so have seen over the years a lot of what works and what doesn't for people.

I think it's really important to remember that there's no magic bullet. I used to try medication, but found that none of them really worked, sometimes of them made it worse through side effects and I really don't be on medication longterm.

Things that have massively helped me:

1. Exercise. The less I move, the worse I feel. I walk and do yoga most days. I play football ( which sometimes is literal agony for the first twenty minutes, but always always makes me feel better afterwards for a long time). I can go for not being able to walk down the stairs without hobbling to being able to run across a full.pitch in an hour.

The days I don't move I wake up feeling ten times worse and the pain just increases. You have to push through that pain. Just make sure you do lots of warming up and down.

1. Finding what I've become.intolerant to. I am hugely intolerant to wheat, raw onions and strong smells like.perfume. if I eat wheat , even a small amoutn I will have a huge flare up a coiple of days later. This meant it took a while to recognise. Onions give me immediate stomach and joint pains and perfume a migraine.

1. Acupuncture. Absolute.game changer. Takes away the extreme pain. And it's now been clinically recognised by NICE for chronic pain. Look around for multibed clinics as they can be cheap. Do NOT go to a physio that does acupuncture, as they will have just had a weekend or two course and not be able to treat it properly.

The people I see in clinic who are suffering the most tend to be on a array of medication. Lots of different painkillers that aren't doing anything. Often claim to have tried giving up gluten or wheat, but that usually means they still have it. And don't exercise as it "hurts too much".

It's a fucker of a disease and the many symptoms are different in everyone. It's really important to listen to your body.

I work full time, but i'm very lucky in that I work from home and if i'm having a terrible day.I can spend a couple of hours in bed watching TV and recoup. I also find make my myself go for a walk when i'm in that situation can be a massive relief.

But it is also manageable. Don't make it become your whole life.And your whole personality. A certain level of acceptance of it makes it much more bearable. I have a brilliant life and have learnt the less I give attention to it, the less it hurts!

I don't eat diary and milk. I have celiac disease and milk intolerance since childhood. Makes no difference.
Tried akupuncture. No difference.

I would never be able to play football or work full time. It's not a question of willpower. I can't. No matter what you say or perspective you think I have if my issues. If only it was that easy to gain back a brilliant life. I had one too.

If only it was that easy to gain back a brilliant life. I had one too.

Same here. Twenty odd years in a job that I loved. Kids growing up so I was going to have a chance of a good promotion or starting my own business. Lots of friends and a good social life. There’s no fucking way I would have thrown all that away on purpose!

As for “making myself” go for a walk, the wheelchair gets in the way of that. Trust me I’d love to be able to go for a bloody walk.

@HopSpringsEternal, I only hope you’re slightly more sympathetic to your patients 😕.

@FlatWhiteExtraHot i hear you. Im also in a wheelchair outside, I manage in the house as we bought a bungalow 19 years afo as things got more difficult. I was diagnosed 25 years ago after 2 years of being fobbed off. I also have Lupus.

I spent all my working life with children, as a TA, 25 years as a childminder and 10 years as a nanny. I had to retire when my last charge went to senior school as it was just to much for me.

I try to do some chair arobics, but dont manage more than 5 mins each day. Its just not that easy.

I can't be bothered to defend myself really. But.will give it a go....I am not on an array of medications( my choice) I used to be a nurse I have other health issues too( which many of us do) There is not a one size fits all solution. Many of us will have tried all manner of things to see what helps.I do not have a defeatist attitude but I do feel very sad at times. My life has changed hugely in the last year.I loathe discussing fibro/ cfs and other health stuff so I don't,unless I have to.

I’ve had fibromyalgia over ten years. I changed to an easier job and manage to just about work full time. I take medication to sleep mainly. It reduces my pain and makes me drowsy. Good sleep reduces my pain levels the next day. I wouldn’t be able to work without it. I too find I’m better without meat.

I try to exercise but I don’t use pools or gyms as I have another condition where I need to avoid infections. I’ve recently found out I have arthritis in both knees, both hips and both shoulders in my fifties. I think there is more to my illness than fibromyalgia. But finding out what has proved impossible so far.

My life is limited by it for sure. To work full time I spend evening and weekends recovering. I can’t go out much, I’m too tired. I really like my job and colleagues and have a supportive family. That keeps me going.

I was diagnosed with fibromyalgia three years ago after contracting Covid in September 2022. My life has gone from working on a female psychiatric ward, hurtling about all over the place, to working from home on a crisis line in absolute agony all day every day. I also have psoratic arthritis and ankylosing spondylitis which was diagnosed last year. I just do what I can do on any given day and try and keep a sense of humour (not always easy).

You're not the only one. I suffered for years with awful fatigue and all over pain. I used to say to DH that it felt as if every joint and every muscle hurt. I could no longer drive because of inability to concentrate and pain in my wrists. I could no longer read books for the same reasons. Life was grim. My only diagnosis was Chronic Fatigue Syndrome, although on my symptoms they could equally have gone for fibro.

Turned out I had secondary hypothyroidism caused by a pituitary malfunction. As soon as I got on Levothyroxine, I made a full recovery.

A PP mentioned a pituitary tumour. You might want to look at this angle.

You should always explore all the possibilities. I have done that too. Unfortunately without success.

I’m already on a high dose of levothyroxine and had been for years before fibromyalgia reared its ugly head.

@Mum3542 I’m fairly sure there’s more to mine too, but once you get a fibromyalgia diagnosis that’s it. You’re just expected to live with it and stop asking questions.

Feeling like a failure after calling in sick due to leg and butt pain. Im walking like an 80 year old! So so fed up

Never feel a failure for listening to your body. In my experience if you try & power through the episode builds, is more severe & lasts longer. One day resting hopefully should nip it in the bud & you’ll be good to go tomorrow.

Sorry you are feeling so rubbish . @sunshineandkindle I agree with @Yogachick
It is so frustrating and upsetting sometimes isn't it though?

I had a pleasent surprise today. We have travel insurance with our bank account.

Looked at what was covered and Fibro isnt so had to phone them to inform them and find out how much it was going to cost me.

The customer service guy was lovely. Very polite and easy to understand. He went through everything with me, added Fibro to my profile, added all my medications and said thats fine your covered now. I asked hiw much it would be and he said nothing!

So that was an expense I was expecting that turned out not to be!

It’s awful isn’t it. I have a sedentary job, largely from home, but honestly I don’t know how some manage. I hope it’s starting to feel a bit better.

Morning All, can I please join this thread?
My dd is 19 and has recently been diagnosed with fibromyalgia so I am looking at ways to help her manage the pain and fatigue. Her pain is in her hands and wrists which affects daily life a lot, uni, weekend work, home etc…

Dh has rheumatoid arthritis so originally doctors thought it could be that but all tests came back clear. What else could we test for?

Consultant was great with her and said they were reluctant to prescribe meds, steroids or antidepressants, due to her age but we are struggling to find anything to help.

I’ve had fibro for over 16 years, it started after the birth of my second child. It took over two years to get a diagnosis and that was due to being at the doctors every week asking what was wrong with me! Had lots of tests and everything came back normal, then the fibro diagnosis was given. It’s interesting how people are saying they started after Covid - is that Covid itself or the Covid vaccine? I’m not an anti vaxer by any means but I believe it was the swine flu vaccination I was advised to have while pregnant, that kicked off my fibro (my own opinion obvs). I manage to work full time but I am exhausted on an evening and weekends and pay the price then. I don’t take any medication other than standard pain killers as I found I felt worse on medication. I suffer with chronic migraine (runs in the family), have spondylitis in my neck and suffer low back pain too. I can’t wear necklaces, scarfs or anything that basically puts any pressure on my neck as it is agony, some days I feel like I can barely lift my head! I also can’t stand being hugged due to pain, I’m constantly tired and brain fog is horrendous. All of that and peri-menopause on top and I often wonder how I make it through the day! The one thing I find really helps my neck pain is biofreeze….take it everywhere with me! Thanks for starting this thread…very useful to hear other people’s experiences. Best of luck to everyone on this horrible journey.

For me there was clear correlation between virus-ME,Covid- Fibro. I hoped getting Covid for second/third times would reverse it but doesn’t work like that sadly. I’ve stopped taking co enzymes q10, too expensive,not noticed any detriment.
https://www.instagram.com/p/DRHxEFWjCtm/?igsh=Zm1hbTFteWZwaWY0
I've started doing these daily,it’s really helping clear the brain fog and give me energy. I’m theorising my lymph is clogged so this might help. Breath of Fire in Yoga also helps unclog my brain on the days( rarer now) where I get a flare. I’m following Slimming World,weight loss is slow but it’s sorted out my chronic gut issues which I was under a consultant for. I very very rarely drink alcohol now as it definitely links to a flare for me.