Fibromyalgia and Headache : I just... - Fibromyalgia Acti...

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Fibromyalgia and Headache

Fern27 profile image
21 Replies

I just wanted to ask if anyone gets bad headaches with their Fibromyalgia. I have spoken to two

Neurologists and just happened to mention my

Fibromyalgia pains and they both said that Fibromyalgia does not cause headaches but I don’t agree (but didn’t say anything) because most of the time I have both body pain and headache. I am now going to see a Rheumatologist. Perhaps I just get both and they

are not connected? I am on medication

Many thanks in advance for any help

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Fern27 profile image
Fern27
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21 Replies
glochessum profile image
glochessum

Yes, headache and migraine. I find lack of sleep a trigger for headaches plus the tension we get in the back of our head and neck. Personally I think your doctor is not very up on fibromyalgia.

Patdoyle profile image
Patdoyle in reply to glochessum

Yes I agree with you on that. Doctors are few and far between who have a good knowledge of fibromyalgia

Selecter profile image
Selecter

Yes, headaches early hours of the morning preceded by neck and shoulder pain. Frequency much reduced by taking propranolol

Cat00 profile image
Cat00

I have had chronic migraines for 30 years, I have always rather assumed it was these that triggered my fibromyalgia , that and my insomnia, stress etc essentially.

Patdoyle profile image
Patdoyle

Yes I have a daily headache. Not pounding just like a tight band around my forehead. I think I squint a bit with bright light and causes the headache. Never got to the bottom of it unfortunately

bigalan profile image
bigalan

Yes, Headache mainly just above the neck for me.

Beautifulwoman profile image
Beautifulwoman

Because most doctors have not experienced these issues themselves, they simply don't know.

Words
Trippys profile image
Trippys

Hi Fern, my GP said the same thing as your neuro.

Arymretep profile image
Arymretep

All the lists of symptoms of fibromyalgia ive read include headaches or migraine , so it’s safe to say that they can be part of fibromyalgia .

Fern27 profile image
Fern27 in reply to Arymretep

Yes thank you I agree!

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

There are a growing list of "lists of symptoms" and seen over the years on facebook them going from 50 to 250+ and we complain about doctors putting everything down to fibro!!!!

Also comments about this or that doctor does not know about fibro because it says this here or they are bad drs are not fair either.

When we say that or this is part of fibro it then follows that if you have fibro then you will get this or that or that is how others read it when they think do I have fibro? We can think of core fibro symptoms and everyone with fibro will have them which is pain, non refreshing sleep and cognitive issues to larger or lesser degrees. But the other things that we associate with fibro can be commonly occurring comorbid conditions OR common reported symptoms that may be correlated with our community.

Those "bad doctors" deal with research and evidence and clinical guidance which I would argue about with them happily, but they are not looking at Facebook symptom lists. So if you have been diagnosed with fibro and then 2 years later you get headaches or 5 years before you get fibro you get them then do the same thing...... Go to the HP and get them checked out as they may be part of you and your fibro but they may not be anything to do with fibro.

Assuming they are part of fibro is not helpful in the long run just like dismissing them and finding it is something more serious would not be a good idea either.

ps other thing I did not mention is some people may get side effects of meds for your fibro or other conditions and that also makes it not part of your fibro.

Arymretep profile image
Arymretep

Surely that applies to everything on the list of symptoms not just headaches, everyone doesnt get the same symptoms , so what’s the point of having lists at all ?

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to Arymretep

Think your replying to my comment? I do not think there is much point to the Facebook lists I was referencing. But the ACR diagnostic criteria is not the same as that list and it does feature headaches (not migraines) but in the secondary criteria rather than the core criteria. So you can be diagnosed with fibro without experiencing headaches but not without the chronic pain and non refreshing sleep/fatigue for example.

Saying something is part of as opposed to can be part of (which you did) was the distinction I was possibly going for. We have this same conversation going over at least 3 separate posts so was trying so sum up in this one.

In the other thread someone had said if you will get fibro you will get headaches (as part of fibro) which is not the case.

Arymretep profile image
Arymretep in reply to desquinn

I Agree that if you have fibro you won’t necessarily get headaches , which also could apply to other symptoms like IBS, which not everyone gets including me

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to Arymretep

This is where it gets more complicated. IBS is comorbid condition so not part of but associated with. BUT and not complicated bit if we are looking at pain in the digestive side of things and not the "messy" bits then this could be fibro and not IBS.

Just like Gynae issues are on the big symptom lists and these do not apply to males but in women if you had vulvodynia then this could be fibro (more tenuous link) rather than separate. Some researchers have said they would not be surprised if there were connected conditions like these that had the same underlying trigger or cause.

Arymretep profile image
Arymretep

Why is fibro such a complicated condition lol😳

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to Arymretep

Because we have still to give or enough about it and know so relatively little about chronic pain and how the body processes it.

saj01 profile image
saj01

I've come to the conclusion it affects different people in different ways.... having read a lot of articles on it, it would seem that even doctors can't agree what causes it. All I do know is when I went to the doctors, I didn't get much help! So I'm doing my own thing... and trying to learn as I go along, picking up tips from people like yourself. Being on my own, it's been life changing. ... frightening at times.

Fern27 profile image
Fern27 in reply to saj01

Yes you are right we have to help ourselves and thanks to this site we can learn more about thisCondition.

LD58 profile image
LD58

Yes I get headaches with my fibromyalgia also pain behind my eyes.

saj01 profile image
saj01 in reply to LD58

Yes I do too... when I first went to the doctor about the constant headache and pain in my eye socket which nothing seemed to relieve I was told it was sinusitis!!!!

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