What are fibro headaches like?

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I don't know what these headaches are I just know they are not migraines as the drs are putting them down as. They are so different to the chronic migraines I've been having for over 10 years, they are not responding to any treatment and my symptoms are completely different it's so frustrating! I have been having daily headaches which start at the back of my head on the left side where your head and neck meet. This comes over my head and into the front of my head and behind my eyes like a big pressure. If I tilt or lay down my ears and eyes feel like they are going to burst the pressure is so full. Joint pains particularly in hips and knees, fatigue (probably from lack of sleep) cold feeling inside bones. Had an mri of head, neck and spine and it was clear.

I am just trying to get my life back so any point in the right direction would be great. Thank you Xx

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  • Posted

    I get regular headaches with my FM RachRoux. They are often different kinds. Some are Migraine like and others are a dull ache and a heaviness for most of the day and sometimes 2 days. Barometric pressure in changes of weather can bring it on. Stress also plays a factor. If you are worried get another opinion from another Doctor. You may be having some extra emotional stress lately. That can have an impact. It could be that you are not sleeping well of late. That can bring on all kinds of symptoms and headaches. Take something for it and lie down girl. The family will not fall apart if you take care of yourself. They will learn to respect you more if you put some importance on your own well being. Treat yourself softly sweetie. This too shall pass. Maggie xx
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    • Posted

      I am under so much stress at the moment I'm trying to keep myself from falling apart so yes stress is a pretty big one at the moment. Changes in the weather really do impact my headaches they can get so much worse. I am trying to be less hard on myself and allow myself to try and rest. Thank you for your reply Xx
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    • Posted

      If you can talk to a trusted friend or family member about your concerns RachRoux, it would help you to get the thoughts out of your head at least. If it is something you cannot change, such as the conduct or speach of another person, then try to let it go. There is so much in life that we have no control over sweetie. Change the things you can, which usually involves ourselves, and let others deal with their own issues. I keep a journal when things get too much for me. I type out all that concerns me or worries me and that helps. Just getting it out helps. Then I try to reason on my worries in a more objective mind set. I have used this method for years and believe me, it sure helps to get things into perspective. Stress is a very detrimental part of FM. So do what you can to lesson this burden on youself. I also think that our men have a big impact on our stress. We are always trying to please them but what often happens is that we subject ourselves to be taken more for granted. Men and women think so differently. I have learned not to expect my man to know what I need emotionally. They often just do not get it. You need to ask for what you need. Spelling it out for them is often necessary. So learning to lower our expectations of others, can really help us to take better care of ourselves. Yes, rest and unburden your worries sweetie. There are ways to manage stress. Don't try to do the impossible. xx
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    • Posted

      Thank you Magpie, the journal is a really good idea I did keep one is the past and got out of the habit but will try and keep up to one again just to get my thoughts down. I have no contact with my family and this is a big part of the stress I'm under trying to accept I have no family is extremely hard and to add illness into it makes it that bit tougher. I'm lucky to have an amazing fiancé who understands me so well. Maybe it's something to do with it being a same sex relationship and females just understanding each other more whatever it is I'm lucky to have her she's my best friend! Thank you for your kindness =) Xx

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    • Posted

      Things may change in the future regarding your family situation. So many families are at odds today. The stresses of life are putting a burden on relationships. You cannot change people's attitudes and behaviours, so let go for now and take care of your health. Time has a way of teaching us all meaningful lessons of life. xx

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  • Posted

    Headaches can also be caused by the things we eat, gluten in particular can cause these bad headaches, but coffee, chocolate, all sorts. It's worth keeping an eye on diet just to see if you can find anything that might be causing it.
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    • Posted

      Never heard that gluten can cause headaches! My partner is gluten intolerant so I can start eating more gf foods and see if anything changes. I've kept a food diary in the past and there were no food links to the migraine headaches. I will have another go and see if there could be any triggers with these headaches. I have a vegan diet and I don't drink alcohol or eat chocolate. Caffeine is limited and not a daily thing. Will definitely try gf as I do love pasta. Thank you Xx
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    • Posted

      My dad suffered with migraine type headaches which began in his neck, he came off gluten and they stopped. Yours may not be this, but it is possible.

      Like Magpie said, stress is a huge factor, and always make fibro worse whatever your symptoms might be. It not an easy thing to beat or to keep at bay. There is an online course on mindfulness which is free at the moment, if you have time you might find it helpful. But yes, don't be hard on yourself, be kind and gentle, just as you would be to someone else in your position 😊

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    • Posted

      Thank you for the advice on the mindfulness ill have a look into it. I have done it in the past but find myself too stressed to switch off. I struggle with anxiety ocd and depression so there can be a lot going on in my head at one time. I need to learn to slow things down. Relaxing is not my forte.=) xx
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    • Posted

      Yes, very often stress, anxiety and depression go hand in hand with fibro and they are probably the most difficult things to try and control. It seems the harder we try the worse we get 😕 But this course seems to have helped, I think I might just have to keep doing it over and over though, just to help me remember ☺️ 

      If you're interested look up "future learn" then mindfulness once you've got there, and it will come up. It's rather nice because you can take it at your own pace.

      take care

      gentle hugs

      Boqer

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  • Posted

    @rachroux... I suffer from very similar headaches huni usually starting where my shoulder and nape of neck meet back of my head graduating up and round to include my temple, eye pulsating, down side of face ... mentioned this to my gp after nothing seemed to shift it and she told me to try taking a dose of piriton... made no sense to me as i have never suffered hayfever etc but she said that sometimes fibro sufferers have reactions similar to sinus, hayfever, allergies dependant on heightened sensitivity to certain types of foods n smells or even temp changes and as i suffer sudden drop in temp in bones and joint pain(although all tests show clear for arthritis n rheumatism) it maybe worth trying.. i sceptically tried it and it actually did seem to help ease it... it maybe worth a try ??

    Another thing when u sleep u may find it more comfortable to try sleeping with a nursing pillow(the v shaped one) supporting ur head and shoulders and a bolster pillow down length of spine n legs curved into ur shape.. it may help u rest if you are kind of cocooned.. it does me but i know everyone different...

    One last thing... try to relax and not over think when u start with the headache try switch off and get some rest if not sleep.. easier said than done i know but please try...

    Sending gentle wishes of restfulness your way..

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    • Posted

      I will definitely try taking a Piriton if that helps these then that would be great. I've never suffered hayfever either but anything is worth trying. I like the sound of the pillows too as I find myself constantly tossing and turning in pain at night. I can never get comfy and feel I need to squash my head to relieve the pressure enough to fall asleep. If I can just get comfy and even just rest I wont feel so exhausted and keep having these mini meltdowns. Thank you =) Xx
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  • Posted

    Hi RachRoux

    It's not a tension headache you are having is it? I say that as the way you are describing them that is starts on the left side where your neck and head meet then comes over your head. What you describe sounds exactly like I was getting which was tension headaches. Do you get tight around your shoulders too? Clearly you are also getting anxious cos of them so maybe you need to do something to help you relax. Try a massage to see if that helps you at all. If it is tension headaches then a massage should help as it will relax all your muscles again.

    Hope you get to the bottom of it. Alison x

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    • Posted

      Hi Alison, drs don't think it's tension headaches no. The headaches I get are pretty severe and are practically every day. I also have nausea and vomiting with these headaches and my eyes do these strange involuntary movements. I'm having a monthly massage to help in general as I'm pretty stressed at the moment. Thanks for the reply Xx
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  • Posted

    oooh its interesting reading the replies, I get headaches but its not the sort of headache i used to get either, mine starts kind of near my tonsils and feels like my throat is swelling up, then i get a numbness or a tingling on my left and side of my face, my eyes feel like they have gone bulgy, i instantly strart yawning and feel kind of exhausted and a bit distant with a achey very pressurised feeling in my head and behind my nose, my neck, shoulders and arms feel achey tingly too, ive wondered for years what it is as its not typical migraine symptoms but its not headache symptoms either. It can also dissapear occasionaly very quickly so not typical of allergies or sinus infection. Bewildering really, it doesnt happen only when im stressed or anxious so im not sure if its anything to do with that either. Weather sets it off alot.

     

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    • Posted

      Have you had this new headache checked with drs? If not definitely get it checked, I went to my dr with one sided numbness and tingling that had started with my headaches and I was admitted to hospital for a week on stroke observations. It's always better to be safe especially if this is a new symptoms you are experiencing! Xx

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