Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Hi there, I'm new to this group as I've recently had a consultant disagnosis of fibromalgia whilst I was asking about Ehler's Danlos syndrome. It was a quick and confusing consultation but the following photocopies of the medical letters listed fibromalgia as something I apparently have. I haven't had a blood test yet to confirm as I was refered to the hypermobility clinic where they'll probably diagnose yes or no.
I've looked at the symptoms and the one that's bothering me most atm is the headaches. Luckily my joint pains aren't too bad from what I've read unless I move or because I'm used to them, and I've developed habits that help me deal with that. But when I've taken paracetemol and ibuprofen in the past for my headaches they haven't helped. I remember when I thought it was anxiety induced (and being anxious probably didn't help) I got nautious and threw up. The first few times were a suprise and the doctor put them down to tension headaches. They have fallen into a pattern of happening in the evening but not every day. They're kind of random and I've worked out that they're not made worse by my anxiety issues as they are not influenced by more anxious days or continuous events.
So I'm wondering if there are any particular ways to aleviate them? I've done google but all I learnt was "40% of people who have fibromalgia experience headaches" or something. Usually I leave them and may try painkillers but they're getting annoying. I actually have one right now and distractions help. But blue light seems to bother me so I have a red filter on my computer. I'm bad with noises anyway so even mildly loud ones are bothersome. I'm trying a heated wheatbag tonight and I'll see how it goes. But I'm wondering if someone can explain why fibromalgia produces headaches and if there is a specific treatment that's helped.
Hope your joints are kind to you
J x
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We're all troubled.WSo, to remind ourselves we're not at rock bottom (this is a reverse optimism thing I learned as a kid):We are not living on the island of Krakatoa when the volcano goes boom!Yeah, okay, that sucks.***Toay in 1942, Pierre Laval announced that the way to free France was for Germany to win WW2. Pierre did not win a lot of friends. When the war ended, quite quickly he was tried...
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Another day, another ouchie?My bruised achilles tendon (don't ask) makes my foot numb. Wonky on meds, whacked it.Now, as to fibro:A lot of reports are going around some parts of social media that fibro (and dang near anything else) are caused by post-Covid, post-flu, post-vaccinations, post-pick-something.1. Your risk of death or serious complications beyond "ow, that shot hurt!" are typically...
Whenever i get sensitive to light and sound and get nauseous, it is usually a migraine and not just a headache...
I am also wondering what other symptoms, other than just joint pain, that you have for your dr to give you a fibro diagnosis.
Another possible source of your headaches grinding or clenching your teeth. You may not even be aware of it. See a dentist knowledgeable about TMJ. A bite splint can be made to put your jaw in a neutral position while you sleep. Take care.
Evaluate your sleep, both length and quality.
Consider if stress is causing teeth clenching as Fantod suggested. I carry stress in my neck causing headaches.
Headache relief takes patience and constant monitoring.
Keep a journal so that you are not relying on memory when discussing your symptoms with a doctor.
I also have issues with skin healing, random rashes caused by nothing, sores from itching, psoriasis and dry skin, urinary incontinence on occasion, urinary overflow, very much a night owl and irregular sleep even when I'm well, often get colds which were thought to be pollen allergies, I wear glasses, anxiety, depression, twitches, abdomen pains, fatigue, a chest pain that feels like my sternum is going to "click." That's all I can think of that I told her about and she noticed (the consultant). She also said that I have Marfan's syndrome and mentioned possible Ehler's Danlos but I got all these from the letters. So I have kyphosis, minor arachnodactyly, no scoliosis but my ribs are lopsided from the kyphosis, pes evectum, and that's all I can remember right now. My GP agreed and we're waiting on various hospital responses. I've got one saying I'm on the waiting list for the hyper mobility clinic. It's weird having all these medical terms applied but when I look in my "physiology and anatomy" book designed for medical students (from a paramedic family member) it all makes sense and it's like I'm in an episode of scrubs where they're trying to get the interns to guess the diagnosis. A lot of my symptoms have been present since childhood and some have been introduced in adolescence and more recently. It feels nice just to list it all and say look I actually have something to the doctors who told me it was growth pains.
I do have a tense jaw and I've been trying to relax it recently but it's always just clenches back up and I'm definitely going to look into what you've suggested, thank you. I try to keep as hydrated as possible, I have low weight issues (it's really annoying, I can eat for somebody twice my size and barely make it into the healthy weight bracket) and if I stand up and get a dizzy spell then I just bounce around and get all bruised. Plus it's really helped with my mental health, though I admit that I sometimes don't drink as much as usual. I thought that they were due to dehydration and I drink lots of water when I get them but then it didn't do anything so I just filled up anyway.
Sorry it's been a couple of days. I want to let you know how reassuring you've been and I hope that you can all find relief. I shall have a look into the mouth-piece and ask my GP about medications. I've started keeping a diary as to when they get bad and I'm managing them. Good luck
Hope that you feel the strength to deal with your headaches, and that everything else is kind to you so there's less to deal with.