Fibromyalgia question

[Fern27]

Hello I have been reading all your post with great interest hoping to learn more about this terrible condition. My question is Do you get really bad headaches with Fibromyalgia, as in nearly every day with the pains in your body? I’m just not sure if the Migraines are causing the bad body pains or the other way round? I’ve had both for a year now and I’m struggling to get a diagnosis and of course the right medication. Would be grateful to know if severe headaches are a symptom of Fibromyalgia please. Many thanks. 🙏

[Adlon57]

Yes I would like to know about this condition? Last 18 months in isolation from covid, told diabetes 2 same time, but stuck in bed most of the time, no exercise! A complementary daily walk around the block, PIP cut off, more sitting around, less exercise, no money no incentive to go anywhere, in the last six months terrible body pain, worse in morning, like a wind up record player, SLOWLY grind through the day, pulling myself up the stairs, collapsed in a chair about 80% of the day, actually slapping my body to get some response from muscles, by evening about 55-60% of body, now know by experience will take 'ages' just to get too sleep? Then exact repeat performance the next day! Is this a left over from the pandemic, wear or lack of wear on the body, abject isolationism, pure lack of brain thinking [actual slowing down of the working of the brain's working and reasoning] , breathlessness, plus I have osteoarthritis and epilepsy just to throw into the mixture! Then this perpetual pain is called FIBROMYALGIA? I don't have migraine headaches, taking about a dozen pills, too many other diagnosed conditions, I suppose something to be thankful for? 🥴 I truly hope you get some relief for migraine headaches, they are bloody nasty!🙄

[Midori in reply to Adlon57]

Fibro is a beast of a condition. It can be different in every sufferer. One reason why GPs don't really like to diagnose it, and some say it doesn't exist.

We know it ruddy well exists! Most of us also know that the depression is because of the pain, not the other way around!

[Fern27 in reply to Midori]

Yes I’m sure you’re right!

[0118sara]

I have suffered fibromyalgia for about 10 years, I also suffered with debilitating migraine for years, like 25 years, but a few years ago I was put on pronanolol 3 x times a day, it is a beta blockers, and now only have few migraines, compared to 1 every other wk. Also have sumatriptan for headaches if they do come Speak to your doctor xxxx

[Cat00]

I have chronic migraines and fibromyalgia, amongst other things, headaches are commonly associated with fibro. But I had my migraines many years before fibro.

[Sandra600]

I have fibromyalgia and also chronic migraine, I am currently waiting for an appointment with the migraine clinic at Addenbrooks about the new anti CGRP injections.

[Fern27 in reply to Sandra600]

Oh that sounds promising hope that works for you have to find out about that? Thank you

[Sandra600 in reply to Fern27]

Thank you

[Yassytina FMA UK Volunteer]

Do you mean you are struggling to get a diagnosis of Fibro ? I read here that people do get headaches with their Fibro but I think if it’s migraines I would pursue that with your doctor still as they can be quite nasty as you know, I was given anti sickness pills but mine do not come on a regular basis .when Ive had them it’s normally lasts 2/3 days and all I want to do is sleep x

[Patdoyle]

I have a headache most days. It’s a tight band around my forehead and behind my eyes. Diagnosed as vestibular migraine but started when I got fibromyalgia

[SusieSquirrel]

I was diagnosed with fibro about 4 years ago now but last year developed severe headaches everyday. Luckily I found a great doc after going to a few others who put everything down to fibro. She sent me for a brain scan which found an empty sella, which can indicate hydrocephalus and intercranial hypotension (i have both) and a cyst on my pituitary gland, which is benign...phew.Moral of the story is not everything should be put down to fibro.

I was rushed in for lumbar puncture and then had a shunt fitted which drains excess cerebral spinal fluid into my stomach. All during lockdown

[Fern27]

Thank you all for your kind replies. I’ve had aMRI on my head which was ok (I said I think my

Kids might disagree with you lol) on a serious

note the two seem to be connected by what you

say the trouble is I don’t know whether I need to

see a Neurologist or a Rheumatologist probably

both! But these headaches and pains every day

And I’m on meds is not good! and I feel for all you

that are much worse than me it changes your life

Thanks again

[mischiefious]

I was diagnoised with Fibro a year ago when my doctor told me this is what I have. This was not a surprise as I had thought for some time there was a possibility due to lots of the usual problems people get with fibro. I had servere headaches where I couldn't put my head on my pillow without immense pain. I would go round in circles all night long and take loads of painkillers which did not work. Anyway, I got sent to the nurse to take my blood pressure which turned out to be really high. I have now been on blood pressure tablets for serveral months and have stopped getting headaches. Turned out the headaches where not connected to fibro. It is hard to figure out what is and isn't connected but I got lucky with my fabulous doctor.

[Fern27 in reply to mischiefious]

Glad you managed to get rid of yours it’s just aMystery when you can’t find what is causing

The severe headaches every day and pain in

The neck and shoulders and other places

I’m on steroids this week to see if it’s Polymyalgia

But that’s not doing a thing! It’s all a puzzle

and all these meds have their side effects too!

Nightmare!

[mischiefious in reply to Fern27]

It takes alot of sleuthing to get to the bottom of problems connected to fibro even if they are distantly connected. My high blood pressure is a result of stress and of putting on weight through pain management / amitripaline / stress and depression all initally through fibro which came about through stress probably. (you could add in menopause as well I guess) Vicious circles! I wish you the best of luck getting to the bottom of your headaches as I know how hard it is to manage everything else when your head won't stop hurting.

[m1keym005e]

Yes, headaches are one of the many different symptoms of Fibromyalgia. Along with all over body pains, random pains, sleeplessness, feeling exhausted, depression etc etc.

[CheetieCat]

Hi Fern27, I had the migraines before, now use a preventative medication daily & also have tablets to use when I have an attack. It took a long time and lots of trial & error but it's made a massive difference, you should perhaps discuss options with your GP.

[Fern27 in reply to CheetieCat]

Ok so you take meds for migraines and meds for the Fibromyalgia too? Which ones work for you If you don’t mind me asking?

[Fern27 in reply to Fern27]

I’m taking Topiramate and Amitriptilyne but it’s not enough or working sadly

[CheetieCat in reply to Fern27]

I take Topirimate as a preventative and Almotriptan when I have an attack. Beta blockers are used as preventatives too, just trial & error to get what works for you.

[Fern27 in reply to CheetieCat]

Oh yes same as me then I take Triptans too when necessary but what do you take for the Fibromyalgia? Topiramate is for the migraine only?

[CheetieCat in reply to Fern27]

No it was originally prescribed for neuropathy but I think it can be used for fibro too. I've tried all the usual ones but weren't worth the side effects tbh. I use Tramadol, co- codomol, Arcoxia, Amitriptyline & another anti D just can't remember the name right now.

[Fern27 in reply to CheetieCat]

Omg quite a cocktail then lol yes I was thinking of the tramadol but heardBad things as you say what suits one might not suit another

Thanks for all your help 🙏

[CheetieCat in reply to Fern27]

Your welcome. Best of luck!🍀

[MADMUMOFSIX]

It’s really difficult to say hun… there are so many ways Fibromyalgia affects us and it is different for each person. I don’t suffer with migraines myself x sending gentle hugs

[Makie-Uppie]

You must have missed my comments about the job goblins armed with Jack hammers trying to drill their way into my head while their cousins the rock trolls are beating me with cricket bats.

[Midori]

I have had Migraine as long as i can remember, but I was only diagnosed with Fibro in my late 50's, I think.

[0dd_0ne]

I get constant 'normal headaches', most days. I've had migraines since I was 16 (possibly younger but they present differently in children so it's hard to know for definite), and at one point I was experiencing 2 - 3 a WEEK! I was put on Atenol, which is a betablocker, and it was a miracle worker. Migraines were reduced to one or two a month. Heaven! However, over the past year they've started to increase again so I suspect I've become resistant to the Atenol dosage. Trying to get an appointment to see my doctor about it (which is akin to getting an appointment to see the Queen...). The "normal" headaches are a daily occurance and is something that I've had since my fibro first appeared. I feel odd if I *don't* have a headache of some sort! Lol!

[Fern27]

Oh my goodness isn’t it awful though to have these daily headaches they just wear you down Hope you can find another remedy 🙏