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
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.
Yes I agree with you on that. Doctors are few and far between who have a good knowledge of fibromyalgia
Yes, headaches early hours of the morning preceded by neck and shoulder pain. Frequency much reduced by taking propranolol
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.
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
Yes, Headache mainly just above the neck for me.
Because most doctors have not experienced these issues themselves, they simply don't know.
Hi Fern, my GP said the same thing as your neuro.
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 .
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.
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 ?
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.
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
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.
Why is fibro such a complicated condition lol😳
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.
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