Fibro dizzness: As many as 70 percent... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Fibro dizzness

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As many as 70 percent of people with fibromyalgia have dizziness as well. This type of dizziness can happen daily and last for a long period of time. This is unfortunate because it adds further disability and increases the risk that you may fall and become injured.

55 Replies
desquinn
desquinnAdministrator

do you have a source for that? I am not aware of anything quantifying it.

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Hidden in reply to desquinn

nhs.uk/conditions/fibromyal...

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Hidden in reply to desquinn

draperchirosource.com/dizzi...

desquinn
desquinnAdministrator in reply to Hidden

thanks for that. I knew that some people got dizziness but the 70% is not a figure I have seen quoted and unfortunately that site does not link to anything that supports it.

If it was present in 70% of cases with fibro then I would expect it to be a prime symptom which it is not. Also it has not been my experience that it as common as that. However, it is common if not ever present. Its a listed side effect on many of the meds that we take so can be part of the treatment rather than the condition as well.

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Hidden in reply to desquinn

verywellhealth.com/fibromya...

desquinn
desquinnAdministrator in reply to Hidden

thanks for that and it is a good sized survey but it does split things to other categories and does not pin cause. Also there is no age related information which would be relevant.

Midori
Midori in reply to desquinn

I used to get very dizzy and eventually attended our Physio's Falls Group, which helped a lot. In my case it was mainly Postural Hypotension.

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Hidden in reply to Midori

Thank you

rocklady73
rocklady73 in reply to desquinn

Wish I would have known this year s ago. Days of dizziness since I was young and I know my Fibro started back then. I've had tests and meds but nothing helps the dizzy flare up

desquinn
desquinnAdministrator in reply to rocklady73

with the cognitive dysfunction / fibro fog, dizziness can be an effect we have but it will vary significantly. And it can be from balance issues through lack of activity, side effects of meds, and number of other things. And age is a factor as well.

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Hidden in reply to desquinn

Yes it can and I would suggest that any dizziness is followed up by a visit to a professional Dr just to rule out possible vitamin deficiency, medication your taking etc.

Like yourself I've had dizziness for years and didn't know it could be due to fibro.

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Hidden in reply to angelikjan

nhs.uk/conditions/fibromyal...

Me too!

Patdoyle
Patdoyle in reply to rocklady73

Yes I am off balance and dizzy daily.

Hazel_Angelstar
Hazel_AngelstarAdministrator

While people with fibro might experience dizziness, there can be many other reasons for it. So don't just assume it's part of your fibro, get it checked out in case it's something that's treatable x

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Hidden in reply to Hazel_Angelstar

Yeah I’ve had all ct scans on brain etc all bloods checked 6 times in 6 months, ecg numerous times, bp 127/77 bmi 2.9

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Hidden in reply to Hidden

Just got over COVID in the last 2 weeks at home but dizziness started long before this

I’ve got FM and in the last six months have been getting dizzy to the point of passing out. My GP is well aware of my fibro and didn’t mention any relation between them. Instead I’ve been on a heart monitor (which was a waste of time as I couldn’t press the tiny green button as I was meant because I was already on the way to the floor🙄). Now I’m on the list for 24hr constant monitor, but it may be a while before one comes my way.Imvho, I’ve had fibro for over 40 years and if dizziness per se was really a symptom, I think it would have surfaced long before now.

Hidden
Hidden in reply to Fibrofoggiest

Dizziness is definitely a symptom you might not just of had it but many FM patients get dizziness in attacks and flares. Nothing wrong with my heart had numerous ECG and MRI and CT scans and Full blood counts all normal BP 127/77 BMI 2.9 I’m currently waiting on audiology test to rule out menieres

Fibrofoggiest
Fibrofoggiest in reply to Hidden

I’m not expecting my dizziness to be down to any issues with my heart, I’m just going along with what my GP has suggested. I have a feeling it is related to low blood pressure/orthostatic hypotension.I know everyone with fibro experiences different thing within flares, I certainly do, so I’m in total agreement with you.

I am however very concerned if your BMI is 2.9 that is almost incompatible with life ..... I’m hoping it was a typo!

I hope your audiology test goes well. Years ago I worked in a pharmaceutical advertising agency and we really got hauled over the coals as the advert we made for on drug claimed to “cure” menieres rather than to “control” it, as it should have read. If it does turn out to be menieres then there are good treatments out there to help you with it.

Stay safe and as well as you possibly can!

Hidden
Hidden in reply to Fibrofoggiest

Cheers and thanks 👍

Patdoyle
Patdoyle in reply to Hidden

After years of dizziness I was told it was menieres but the ENT only confirmed that when he tested my hearing. You have to have hearing loss and tinnitus to get a diagnosis. Mine started 25 years ago but only diagnosed in 2019.it’s another illness that doctors struggle to get to the bottom of. I’ve seen 4 neurologists god knows how many ENTs and ended up with the probably menieres diagnosis with vestibular migraines and upper cervical damage. I take betahistine 3 times a day. Helps a bit. I hope you haven’t got menieres.

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Hidden in reply to Fibrofoggiest

nhs.uk/conditions/fibromyal...

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Hidden in reply to Fibrofoggiest

Your Dr must not work for the NHS because it’s states dizziness as a symptom

Fibrofoggiest
Fibrofoggiest in reply to Hidden

I’m afraid he does work for the NHS, but I’m not sure he is fully aware of all the complexities of fibro 🙄

Hidden
Hidden in reply to Fibrofoggiest

Type error 22.5 bmi

Fibrofoggiest
Fibrofoggiest in reply to Hidden

Phew...... I’m so pleased 👍😊

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I was talking to a consultant physio from QE last week and he told me something fascinating about FM

LisaSnow
LisaSnowVolunteer

Medications like pregablin and gabapetin can cause dizziness as a side effect. I felt really dizzy after a few hours of taking it today. I don't think it is due to fibromyalgia, more likely related to the drugs we take.

I do get dizzy and unfortunately have fallen many times ending up in hospital when I fell down the stairs my legs often collapse under me to with no warning doctor and hospital have no explanation as to why this is happening as wuth your self I have had mri many times and 3 cat scans the mri does show a build up of fluid and tissue in the base if my spin and believe that that could be the cause of my legs collapse but the dizziness they at first thought it might be my ears but as I now get regular ear infections but that was nit the case then they found that I have narrowing of the vertebrae though out my neck and said that this could be the reason but they did say that they cannot say for certain that not enough is k own about this at the moment the reason they ruled out my meds was that they dizzy spells happen most days they don't last for long but do get them several times in any 24 hrs

I have had spinal problems for over 40 years, initially around neck, that as well as pain, has caused seizures and regular vertigo and ‘faints’.... had all the tests over the years and everything was ruled out. My chiropractor says my atlas is small, and has always thought problems were due to narrow passage thru vertebrae that pressed on nerve/blood vessels, especially when neck/shoulder muscles got tense as vertebrae became disaligned. Gentle spinal manipulation( McTimoney trained chiropractor) every 6-8 weeks helped; acupuncture didn’t. Oddly after decades of learning what not to do to set it off ( from chopping carrots to cob-webbing), it is slightly better now ( though most daily tasks that get me spinning are looking into oven at thigh height and emptying the tumble drier...just gets my neck tilted at the wrong angle).... a fibromyalgia diagnosis about 6 years ago has not made it worse, though I do get rogue fibro symptoms like ‘needing to pee’. Of course fibro , and age, does mean I don’t do so much physically, and I now also make sure my vit/ min levels ( especially b12) are near top of range, as I am hypothyroid too. Doctors have been quite ok with the diagnosis re pressure on neck vertebrae, and I get family members to do some tasks.

I suffer with unsteadiness. I don't feel dizzy like my heads spinning etc tho. Its more unsteady. Stumbling and lurching about and walking like I'm ratarsed is very common. Tiredness doesn't help. Pregabalin made it 10 times worse and is something I came off, horribly and would not have again. Myblood pressure is a little high and I take a low dose of Ramipril for it. But its not enough to cause it. Its more unsteady gait and losing balance than dizziness. I broke my foot from losing my balance and lurching around the garden. It often takes me 3 attempts to get up from sitting. But its not just rising from sitting. I don't drink at all. Haven't for years. Maybe I should!

LisaSnow
LisaSnowVolunteer in reply to Mrslebon1

I took only one 75mg pregablin 12 hrs ago and my head still spins!

Mrslebon1
Mrslebon1 in reply to LisaSnow

It could just be an initial side effect. Its impossible to know this soon unfortunately. I took it about 4 years ago, when they were still sure I had Psoriatic arthritis duuuhhh. After a few months it was horrendous. I even tried to go up the down elevator in M&S and looked off my head, stumbling about. I took it for 7 months and it took about 4 months to slowly gradually come off. I'd give it a few days more then speak with GP. It suits some people so its hard.

I also suffer with some stumbling/ dizziness like my legs also can’t take me. I normally go to the right but funnily enough I have left sided weakness. Some days are worse than others and how your feeling with other symptoms also does not help. I have M.E as well as fibromyalgia and suffer chronic migraines. I hope this might help some people. I’m no longer on pregablin. I hope your all not so bad this morning but gentle hugs to you all.

filenada
filenada in reply to Twinkle0411

Hi, I have recently been told that I too may have ME as well as FM.... Can you help me with some words of wisdom please, regards Filenada

Thanks for this information, this explains a lot why l feel dizzy sometimes

I’ve been investigated for over two years now by ENT, audiology, neurology, cardiology for the dizziness, balance and headaches I have on a daily basis. I’ve had every test, scan you can think of, done a specialist audiology physio programme, taken out different medications under supervision to see if any of them work. And nothing (the tests show v poor balance but no reason why) exactly the same as when it suddenly started. I wake up feelings like I have a hangover, and if I’m lucky and stick to a now carefully honed morning routine the headache will go, but the lack of balance remains an issue. I have to use crutches outside otherwise falling would just be when not if. No-one has suggested it might be fibro and it never occurred to me either - it feels different. And would mean there probably isn’t a treatment - the last thing I want to hear. About to try adding in new drugs rather than focusing on a diagnosis- seeing if anything works.

See my reply above to Jam 1861. It seems to have started off around 26 years old ( I am now 67) with horrendous neck pain that useless GP said was ‘ virus’ related, and then got numerous stiff necks... the seizures were at about 38-40.

Thanks - my ENT consultant thinks it’s something to do with my neck - similar to you. But my orthopaedic consultant who is doing work on my lower back but has looked at and scanned my neck is v dismissive of that. I have another consultant who is going to focus less on a diagnosis but more on whether there is any medication that might help (muscle relaxants do a little).

The neck problem was never seen on xrays/ scans, but the gentle chiropractor could mend it ‘overnight’...it would just go back in 3-4 weeks at its worst. Fact that muscle relaxants work a bit suggests to me it is similar to mine; my shoulders/ neck muscles would go rock hard. Might be worth trying a spinal manipulator/McTimoney trained person ( not other chiropractor or osteopath, or even sports therapist, they are far too aggressive).

Thanks - I will look into that.

So true Hocca, I stumble due to dizziness and nausea that accompanies it! Trouble is it's very difficult to quantify - hope you have a better experience. Much kindness ☺️

It may also be a simple case of bppv.

Wasn't sure if I can contribute, praps a little: When I had dizziness for a time, I learnt to prevent it by closing my eyes when moving my head quickly, like when stooping.

Hi Your right it’s dreadful I get it every day sometimes all day meaning I can’t move from that spot.

So sorry your suffering big hugs 🤗

Regards hel52

Hidden
Hidden

Thank you for you reply because according the one of the forum members who runs this Fibromyalgia post is telling me it’s not a symptom and not recognised and yet a lot of people are replying to say they have it and he is now telling me my Consultant Physician at the QE doesn’t no what he’s talking about not just on dizziness but the term of Fibromyalgia means

Jam1861
Jam1861 in reply to Hidden

As I said I struggle with the dizziness but they have not said that it is cause the the fibromyalgia that causes me brain fog constant pain stumbling I have to walk with frame now always tied may be it is that although fibro has been around a long time they still do not know what causes it and a lit of so called medical professionals don't believe that it is real even when presented with the reposts from.mediacl journals and hospital diagnosis I guess it is in a way like civid we learn as we go along one size dont fit all

Yes. I have it from time to time... It's weird, on those days I have to be careful how I am, move otherwise I lose my balance!

I do get dizzy spaells but didn't think to relate it to fibro, thought it's a part of ageing!

I too have dizziness. Sometimes get up with it and sometimes comes on during the day. If I sit down for a while it starts to wear off. Got it badly in Sainsburys last week and had to sit down in the shop but I was fine after sitting for 15 mins.

moo196
moo196 in reply to Little08

Sounds like bppv. Have you discussed this with your gp? The epelay manoeuvre and brandt daroff exercises may help.

Little08
Little08 in reply to moo196

Thanks. The GP reckons it's the medication I agreed until I saw the post about dizziness. Blood pressure always good.

My understanding is something to do with the ears - irritation (swelling?) to the eustachian tubes . Possibly caused by sternocleidomastoid muscle in neck. There are some people who say stretching the muscles in the neck helps.

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