Fibromyalgia / Migraine: I’d like to... - Fibromyalgia Acti...

Fibromyalgia Action UK
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Fibromyalgia / Migraine

I’d like to hear from anyone who has acute fibro flares with a concurrent migraine - not sure what comes first.

I have a dx of fibro and it is generally well controlled with Gabapentin. I did experience these combined nightmares before my dx and treated them as ‘separate’ conditions. It was only when Fibromyalgia was dx and the comorbidity explained that five years of hell became clear.

I had a total knee replacement 3 weeks ago and this lot kicked in around a week ago and I’ve also had a couple of stressful incidents since. The Gaba has just stopped working. . If you’ve ever had this you’ll know the pain and debility and it can last up to 72 hours as can a migraine on its own.

My legs and feet are burning, every joint and muscle hurts and my anxiety levels are through the roof. The migraine pain in my head needs no explanation. I’m totally exhausted and can barely walk from one side of room to the other Slept for 13 hours yesterday

I was making such good progress with my knee until now

If you’ve suffered with this you’ll know that the fear of these episodes becoming recurrent again is too much to bare

Sorry for offloading

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sorry to hear you having it rough. yes i get migraines. i had migraines first in my tee anns and through my twenties, they improved slightly. the last ten years (i am 52) they are back with a veng. initially i put it down to hormonal issues... but i see lots of us have three things - ibs (since 18) Migraine (since 16) then finally fibro. i must say i do hold my stress in my body as i have always tried to hide my anxiety and pain. so i reckon i have made things worse internalised the anxiety and pain. i can't hide the pain from migraine. it isn't something i chose to do especially i think i just come from a family of people who always said keep going, don't show you struggling, not the thing to do. so in a way i am not surprised my muscles have gone crazy

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Sorry forgot to give you the link 😂🤣😂😂

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Thank you for responding Livonia. I think too many of us suppress our feelings and our pain. Stay well x

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Hi Scrambler 😀

I totally sympathies with you, I have FMS 20 Year's and Myalgic encephalomyelitis 18 years and osteoarthritis in knees hip and feiumar bone as well as cirvical and lumber spine.

I have a wide range of other physical health conditions, and one of them is hemableiga migraine.

The best I can advise you to rid of your flair is warm to hot showers place in the head of the shower at your ankles and shower upwards and especially when it comes to your knees. You can Also place Deepheat cream onto them and 20 minutes later just put a cool pad on them. Do the same anywhere else you are experiencing the F.M.S Fibro myalgia syndrome Pain.

Go to YouTube and type chair exercise and this also help. Because of you don't do these types of exercise then you won't be able to take one step and you already know how frustrating it is to only be able to walk across the room, very gentle exercise is so important for not only the body's of someone with FMS but also their minds.

Here is also a link that's helped so many people with physical disabilities and is so gentle but extremely effective.

I hope this helps you and you feel better really soon. 🤗🤗😇 Be well and keep strong 🤗🙏😇

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Thank you for your advice. Getting everything together is vile isn’t it? Hope you’re having a reasonable day x

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Hi Scrambler 😀🤗

It is hard but if you also try taking two paracetamol with a hot cuppa tea while in a dark room and just when your finished your tea put a dark cover over your eyes and extremely quiet soft music, maybe Dave it to a play list the days you don't have a migraine and then play it while you take very slow deep breath in with your nose and hold it for the count of 3 then sigh out through your parted lips pause then do it again while you listen to the very soft music . The reason for the music is for you to focus on that while doing the deep slow breathing of fresh oxygen to your brain so you won't be focusing on the pain of the migraine.😎😎😎 Keep dark glasses on even in the house for 12 Hours even if you feel okay it will prevent the migraine coming back. 😀🤗🤗🤗

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Sorry some my spelling was off there . 🙈🙊 I hope you know what I meant?😂🤣 Be well and keep strong 🤗

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🤗

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🤗🤗🤗🙏😇

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Sorry for your problems. I too suffer from migraines which appear to be getting worse, as do the fibro flare-ups. Had migraines when 12 years old, had wisdom teeth removed and things improved. now with fibro have suffered more migraines, feeling generally ill. I manage to control them to a degree but as stated they leave me feeling ill. Soluble solpedine help if I can catch the first of my symptoms, the eyesight 'loss' and distortion. Had recent fibro flare-up, which will not settle and I do associate the migraines with this. Hope you soon feel better, it is also the fatigue with me, just feel exhausted all the time. Unfortunately the constant regular 'fights' with the DWP do not help the situation!

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Thanks for your reply. I think the fatigue is the worst part 😩

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You have described my condition exactly! My migraines are getting more frequent and taking longer to go. Im undergoing a course of dental treatment that has disturbed my “bite”, suffer from hayfever and have just been told I have a cataract so I’m unsure if any of those things have caused an increase in migraines. It’s awful not knowing how you are going to be from one day to the next; trying to make plans only to have to cancel the day before, or even on the day. We are strong to survive all of this - well done us!

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Plans? What are plans?

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By plans I meant when you want to make arrangements to go somewhere, meet up with a friend etc

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Good morning Scrumbler. I have suffered with migraines since the age of 6. If you do suffer from them I am sure you will have taken yourself off coffee etc. But I have found in the last year that I have managed to control my migraines much more than over the previous 50 years by over hydrating, I started drinking more water when I had an horrendous fibro flair about a year ago as I felt so dehydrated during it. Sounds so simple doesn't it but honestly drink water and when you think it is enough drink more. Having previously been hospitalised with migraines and trying anything and everything to help alleviate the agony I have been amazed that since hydrating more they have been manageable, even during a fibro flair. Best of luck. Let me know how you get on.

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Thank you for your thoughts. I’ve noticed that if I don’t drink enough I get a migraine - but overhydrating doesn’t seem to stop it. Too late then perhaps 🙄

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Ok. So I'm in the process of being diagnosed with fibro. I was diagnosed with migraine with aura a couple of months ago. I used to take amnitriptalene for something years ago, which was great but it was short term for me and it made me groggy in the mornings and I like to not feel that for work. However, it is something that Drs are looking to put me on as it would cover both migraines and fibro, which they think I have acute flare ups of but becoming more often. Just an idea

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I hope what they’ve got in mind isn’t Topirimate😩. It’s an anti convulsant which can address both conditions. It’s got some heavy weight side effects 😡

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Since the first major fibro flare, 2 years ago, I've also started suffering from migraines. The latest batch has come after a flare which saw me reduced to shuffling instead of walking. As well as pain killers I find that White Tiger Balm helps, could be worth a try 🙂

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Do you use that on forehead ?

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Yes

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Hi replying to migraines. I've consistently been having migraines since 2007 caused by fibromyalgia. After trying several different meds i find Pizotofen is the best for me, couldn't be without it. I find reading from my mobile phone & Laptop for long periods really increase my migraine.

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I too find that too much ‘screen time’ is a factor / especially when using my phone.

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Have you tried Fever Few, I’ve had ME since Christmas 2005 and Fibro for about 2 years, with my onset of ME came a chronic headache, I’d never suffered from headaches before and this when on for a good 10 years headache 24/7 no break, no headache tablets worked, until someone recommended Fever Few, not the crap you get from Holland & Barrett they won’t touch the sides as they are only 100mg you need 1000mg I used to get mine from Amazon. They take about a week to get into your system, but that morning I work up and had no headache was an unexplainable feeling, now I take CBD oil so haven’t taken Fever Few for over a year now as the oil combats most of my pain so I can completely understand what your going through as do the rest of the people on this forum.

Hope my experience helps, good luck in finding some peace xxx

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This has bad side effects for anyone prone to gastritis. Sod’s law - most of the supplements which can help have this side effect, including Turmeric

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Sorry to hear about your flare up, I’m actually having the same flare up today. Hurts to walk, feet feel like they are on fire, pain intense around neck and shoulders and a migraine that is making me wear sunglasses in doors. In my flare ups my legs tend to ache before the migraine. I have been on gaba, then Pregbalin and now trying amitrptyline but not found any that helps yet. Waiting for my pain clinic appointment to come through and hoping they can help 🤞

Will keep you informed 👍

Meanwhile I found using a ice pack on my forehead eases the migraine and a eye sleep mask. Hope your flare does not last too long, my flares seem to come when I’m stressed so try and relax ( very hard when you are in pain I know) I have an app where I listen to the waves crashing on the beach that helps ❤️❤️

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Thanks for the tips. Hope the waves aren’t crashing too loudly 😩. Your episodes sound very much like mine. The leg pain starts first and I know Im in for it.

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i was sent to the headache clinic where i was diagnosed with chronic migraine, but because i take a large amount of meds already i was given botox ( on the n.h.s ), they give you four sessions 3mths apart and apparently it helps 30% of people, you could maybe suggest this to your gp,...hope it helps

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I’ve been considering this. Did it work for you?

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I suffer from a large number of comorbidities. For the FM I take GABA, Venlafaxine, Paracetamol, Naproxen, OxyContin XR & Oxycodone and yet I am still in one of my worst flare ups of all time.

Additionally for my Migraines I am taking Topimarate and Pizotifen, but the treatment that has helped the most is the Botox. To the extent we are about to start reducing the Top. and Piz. tablets.

If you can get it then take it, it takes about two sets of injections to fully kick in, so twelve weeks.

I wish you all the best and good luck, never despair their is always another option, another treatment or therapy.

If the FM is truly beyond what you can cope with their are residential courses on the NHS to teach coping strategies, from meditation to better drug combinations.

Be well,

Rai

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Thank you for your kind words 😊

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Hi,

I have just been prescribed Sumatriptan for my regular migraines with fibro and it is incredible for clearing the pain when it starts. Maybe talk tk your doc about it? Can't believe I lived with migraines for so long! X

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I’m a bit of a wuss with this drug. Heard some grim things about the side effects 😩. Mind you not much could be worse than what I’ve got.

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I react to EVERYTHING. Am not on any other prescription drugs aside from this one, due to many many side effects, and have had no problems with this so far. I always think its worth trying. Unfortunately often us fibro's have very little to lose as our normal is often so difficult. Hope you find something that works for you xx

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just about to start my 2nd one but had at least 1 day free from headaches

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Hi yes I get regular migraines with regular flare ups with fibromyia it's not funny I know how you feel its the worst feeling in the world. I take rizariptan for the migraine and two Anadin Extra. Lay down in a dark room. It can last up to a week sometimes I've had migraine for weeks at a time. My flare up with fibromyia are more regular than ever. I'm like you struggling to get to one end of the lounge to the other. There's nothing you can do. I've tried everything over the years. Gabardine and pregbalin are the same drug they don't work for me they just made me put weight on. Hope you feel better soon. Take care

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It seems the majority of responders are being offered some form of drug from the Triptan group of drugs. They are highly effective at blocking a migraine from developing beyond the initial twinge, however you have a limited window of opportunity to take your first tablet, and your second one (if you need it) thirty minutes later.

For a large number of people Triptan’s are an excellent choice, however for others they just don’t work.

I personally had horrendous side effects, worst of all being blindingly horrific migraines that left me laid out in bed for weeks.

I did find that another migraine interrupter ‘Cafergot’ was very effective for me, however this has now been discontinued (mostly due to the fact that the Triptan drugs were so effective and with fewer side effects.)

So the drug I’m on now and the drug I recommend to everyone is Botox, rather than an interrupter it’s a preventative that has to be done every 12 weeks. I get a 70-80% reduction in migraine attacks after 3 treatments.

I should put in the new drug Aimovig, which has now been made available at the National Migraine Centre but you would have to pay for this yourself. They are claiming a 50% reduction in Migraine incidents, in those suffering from more than four incidents per month.

Okay, that’s my lot. Love to you all, we all share in each other’s pain and angst xxx

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