could it be fibromyalgia?

[sentfrmmyiphone]

i've suffered chronic migraines since i was a child, it would appear that i also have osteoarthritis in pretty much every joint, i have a couple of herniated disc's in my back.. i've been checked for MS whcih i'm told its not... Occ Health at work want me to go to my GP and discuss fibromyalgia?

I'm currently having what me and my DH call 'one of my flare ups', so i have a burning sensation down my left calf and foot, a lingering headache, my tinnitus is playing up, the sight in my right eye has reduced and i have pain and numbness down the right side of my face.

before anyone says 'stroke'... its not, been investigated for that in the past, have been investigated for heart attack in the past..

is it worth bothering the GP?

Could well be. I recently got diagnosed with fibromyalgia. They did all sorts of tests to get to this. I snt her headaches but I do get tingling and numbness in my face and arms. And I get horrible all over body aches and pains, fatigue , dizziness, titinus, eye pain etc..

Alternatively I'm pretty sure there is a type of migraine that is very consistent with your symptoms though I can't remember the name.

Why would you not go to the GP with symptoms like that?

Why is work diagnosing you with stuff that has no treatment - and could be used as a reason to terminate your employment for reasons of capability?

Are you a union member?

i think you can see from my thread I have seen the GP and consultants over the years for the various indepenant issues, all of which i have a formal diagnosis for.. so Chronic Migraine, Osteoarthritis, Hernited Disc's.. I am under the consultant for a new hip. I am awaiting a consultation to investigate the tinnitus unfortunately there is a 21 month wait with the NHS for this, I've seen an eye specialist who has confirmed no MS but i am starting with cataracts. I have seen heart specialists for the heart and have had CT and MRI scans for suspected stroke.

works OH have suggested i seek a diagnosis for fibromyalgia, which would be i assume an amalgamation of all of the above.

but thank you for your helpful comment.

This is a very good comment well made.. Work have been exceptionally understanding over the years and have made changes within my work place, suitable desk and chair, hours etc...

I guess if my sickness hits triggers then they can begin the disciplinary process against me. They are aware i am technically classed as disabled, and i work exceptionally hard to remain at work, but my absense, although not great is not yet flagging as i often force myself to work when ideally i know i should not be there.

I suspect they want one word for whats wrong with me rather than the list they currently have?

I personally see no benefit if having a diagnosis for something that has no treatment route which would be any different to what i am already doing.

Yes i am in the union

Hemiplegic Migraine is the name you are looking for, and the consultants considered it but i have had no formal diagnosis.. To be honest, they were so set on it being MS (sister has it and mum had it), that they have all got blinkered to any alternatives.

Fibromyalgia is (imho) just a label for widespread chronic pain/fatigue where they have been unable to find another cause. Seems like you have a diagnosis already (herniated discs and osteoarthritis) which explain the pain. Added onto that migraines and tinnitus.

i don’t see that a fibromyalgia diagnosis would be helpful or indicated. By all means talk to your GP but be aware there is a chance if you end up with a fibromyalgia diagnosis you then spend the rest of your life being fobbed off over any new symptoms and no investigation done as they will just shrug and blame everything on fibromyalgia. There is no treatment for fibromyalgia apart from taking painkillers which you can do without a fibromyalgia label.

Thank you.. this is actually what i thought! i can see no benefit to having the label other than i suspect it will make my works OH department easier.

I have refused so far to speak to the GP about this, and have told OH that if thats what they want then they can arrange a private consultation at their expense which i feel is fair.

As i've said i have worked very hard to be were i am work wise and am no way that far down that they will even consider getting rid of me.

It depends whether the perspective would change the treatment.

I had injury after injury for no good reason. Migraines, IBS etc. Fibro diagnosis drastically impacted how I treat myself, how I understand my body, and the medication I take now settles an over stimulated nervous system so I don't get the same pain.

It's a lifestyle change supported by medication, I feel. I now look after myself instead of driving myself to work harder at getting fit (resulting in an injury).

I agree with @CormorantStrikesBack. I'm stuck with a Fibromyalgia label, from when I was diagnosed with hypermobile EDS, and it's caused me nothing but trouble as I've spent years having my pain and fatigue dismissed and not taken seriously. Turns out I actually have POTS (as well as the EDS) which IS treatable and I honestly think there was a chance I might have been diagnosed years sooner if I'd not had the Fibromyalgia label. Frustratingly, Fobromyalgia is still on my records so I appear to be stuck with it now.

doing some basic googling, i think you are right. i already force myself to exercise, even though it hurts, i push on as its great for my joints and my MH. i already take amitriptyline for my migraines and nerve pain in my back and hip, and as for 'talking therapies'.. with the state of the NHS as it is at the moment i'll go on a list only to be deemed 'high functioning' and sent along the private route which i cannot afford.

so basically, i'm just about already dealing with it, without the label, and i really don't want the label as it may hinder things moving forwards.. thanks

Have you read up on pacing? That was my biggest surprise. I was a boom bust person, and thought scheduling a rest was all that was needed. But no, pacing means slowing right down and doing less than you can. After a period of recovery you rebuild your stamina, but always doing less than you could.

Stress and pacing were my learning points, and recognising that excitement is also stress. I treat myself a bit like a toddler these days- do T get overexcited, overtired or overwhelmed! Send myself to bed when necessary 🤣

i shall have a read... but it doesnt sound like something i might enjoy to be honest, i refuse to let this body slow me down

That's the thing, isn't it? Cataracts can be treated, tinnitus (well, any hearing loss making it harder to cope with) can be handled with hearing aids, therapy and a quiet office, a hip can be replaced, discs can be operated on and physiotherapy offered with a decent workstation, migraines come and they go.

But fibro? No cure for that, no workplace adaptations will help, a whole load of misogyny and ageism mean it's treated as a mental illness/lack of character (have they gone on about brain fog yet?).

Workplaces then say you can't perform your duties and this will not improve, so time to fuck off. And then they can replace you with somebody younger, cheaper and frequently male.

I'd fight this attempt to overstep robustly.

Pacing isn't fun but, while it feels like slowing down in the short term, it actually enables you to do more in the long run. I ended up very unwell because I was unable/unwilling to get to grips with pacing. Listen to your body and don't push yourself too hard, you'll regret it in the long run.

It's more likely to do with your herniated discs pressing on your nerves. Fibromyalgia isn't really a proper diagnosis it's what they give to people when they don't know what's wrong.
I was diagnosed with it by a lazy doctor and many years later correctly diagnosed with EDS, POTS & MCAS.

@LadyWhistled0wn Can I ask where you got your MCAS diagnosis? I have EDS and POTS and I'm certain that I also have MCAS but the only specialist in the entire country is in London and private only. I'm planning on going to see him but I'm just wondering if there is another option.

Osteoarthritis is a disease on its own and if you have it in every joint that will be causing your issues?

I would definitely try talking therapies. Your determination to push on and fear of slowing down is almost certainly not helping.

Herniated discs could be aggravating the migraines and causing the tinnitus?

Doctors love a fibromyalgia diagnosis. It means that anything you ever experience in subsequent years can be put down to fibro and basically ignored.

Intestinal issues? Fibro
Back pain? Fibro
Migraines? Fibro

Once you’re diagnosed with fibromyalgia you might as well give up any hope of getting treatment for anything.

well from what you are all saying i am most definitely better off not having a diagnosis... it therefore does make me wonder why OH are pushing for it?

i shall just ignore them from now on and carry on as i am.. i'm horrified to hear some of your stories!

i've asked for help with my MH many times in the past, as i suffer from PTSD and disassociative amnesia from a absuive childhood. unfortunately because i am 'high funtioning' and 'self aware' and 'self reflective' the NHS are unable to help me because my issues run very deep and their standard 6 or 10 sessions would only scratch the surface, and because i refuse to take anti-depressants, they basically discharge me.. until i have another 'episode'

i've given up, i do as much for myself as i can, i am not going to get any help unless i pay for it, and i can't afford it. Currently i am well, and we shall see how long it lasts

Have you read ‘the body keeps the score’? I haven’t, but people with trauma history also more likely to have complex health needs. I can’t remember what I was reading recently but it’s an interesting area.

For me, self care is crucial. Not simply living a healthy lifestyle, but actually giving yourself TLC- in whatever form that comes for you. It can be really hard, but is also really helpful.

You don't necessarily have to go that deep if it's only 6 weeks, but I know it's not for everyone.

If you have PTSD and trauma you really should try and get some help.with it. A good trauma therapist could change your life.