Loss of balance

Apparently I have had fibro for more than 40 years, but about two years ago it got to the point where I finally got it confirmed, and had to retire from my business. About that time I had been on a Xmas cruise (no I'm not rich just saved for a long time!) and when I got back home I found that I had lost my balance and often looked like a drunk staggering about. I had thought it was just the difference you feel when stepping off the ship onto the shore but it has not gone away. I went to the GP and he carried out all sorts of tests but nothing was found, so that's how things were left. Is this a common thing with fibro that people recognise or is it something else that I should look into further? I am fed up with having to use a walking stick to get about. By the way when I turn over in bed (with great difficulty) it's like going to bed after a good night out and more than a few drinks, when you're sure the next time you turn over, it will be right over! I used to love a drink or two socially but haven't been able to partake for more than ten years or so because my eyes flare up and itch beyond belief, so it's just not worth it - pity but there you go!

12 Replies

  • It is normal for my balance to be slightly out, but the only times that i have had it bad enough to feel it lying down and that was during an illness that hospitalised me and once during a bad flair.

    When i was first diagnosed i tried to live as normal, then i felt dizzy most of the time. once i learnt to slow down and pace it eased off a lot.

    So you may be overdoing things.

    I think that you should still have a word with your Gp to make sure that there is no other cause.

    Sue :)

  • I have experienced this often, with me it is a build up of fluid in the ear, maybe something to get checked out. x

  • I agree with mayrose it is normal. I call them ditzy spells! Sometimes they last minutes sometimes months! I use cane but that is more due to my back. Hopefully your doctor can give you something to ease the spell. Hugs

  • As you say your Dr carried out all sorts of tests and they were all ok it sounds as if it could be a fybro thing, I know my balance is terrible and have to be careful not to fall as I have osteoporosis.

  • Yep and it hurts

  • Just wondered whether around that time you started on any new meds as sometimes they can have that effect. As Mayrose says if I push myself I can go very lightheaded and dizzy and that normally recedes if I rest. Hope you can find something that relieves your symptoms as it isn;t a nice feeling.x

  • I was having the same symptoms and was diagnosed with vertigo but it comes and goes. I have to use a stick anyway otherwise I would fall over legs arnt good. Hope you get a diagnose I have meds for mine. Xx

  • I am so sorry to read this and I sincerely hope that you can find the answers that you are looking for. I am always losing my balance and I have to use a tri-walker to get out and about. It got so bad that after one very bad fall a couple of years ago I was sent for an MRI of my spine and it came back saying that my coccyx have withered away and this is adding to my lack of balance.

    I want to genuinely and sincerely wish you all the best of luck.

    All my hopes and dreams for you


  • Fibro steals your mind and parts of your body. It's an insidious, creeping disease and I hates it forever! (Sorry, no, thats supposed to be hobitses!)

  • You say it happened after you came off your cruise?

    there is a condition called 'Mal de Debarquement Syndrome'.


    To my knowledge, the first reference to the syndrome was made by Erasmus Darwin, in 1796. He wrote:

    "Those, who have been upon the water in a boat or ship so long, that they have acquired the necessary habits of motion upon that unstable element, at their return on land frequently think in their reveries, or between sleeping and waking, that they observe the room, they sit in, or some of its furniture, to liberate like the motion of the vessel. This I have experienced myself, and have been told, that after long voyages, it is some time before these ideas entirely vanish. The same is observable in a less degree after having travelled some days in a stage coach, and particularly when we lie down in bed, and compose ourselves to sleep; in this case it is observable, that the rattling noise of the coach, as well as the undulatory motion, haunts us. " (Darwin, 1796).

  • Hi there regarding your loss of balance, i have this problem to when i have a bad flare up the soles of my feet was very painfull and my balance was all over the place like i was drunk (dont drink ), i have all other syptoms,doctor put me on Amitriptyline at night,they do help with the balance,but dont do much else, hope you get some help soon, although there is not much they can do for this condition,dont think they no how much we have to suffer,wish they would try to find out more to help us, lots of hugs.xx

  • Hi Holly20,

    What with everything else I had forgotten the pain on the soles of my feet. I don't walk well now and use a stick, but before that I had to pad my shoes up with all sorts of insoles and stick stuff to my feet and even then after a short walk they went red hot and felt as if I was walking on blisters! Before I was diagnosed with fibro I went to a physiotherapy specialist (after all sorts of exercises didn't help) and he said that my insteps had fallen (ie flat feet) and that puts the knees out of alignment which upsets the hips, hence all the pain. I was offered orthopaedic shoes but didn't take up the offer because of vanity, but am now very careful about what shoes I wear, and also have some shaped insoles which help a bit. I think the balance problem is coming from my head, maybe the ears, because I can be standing absolutely still and suddenly sway badly. Now the breast cancer has hopefully been sorted out and the radiotherapy finished (excellent care from everyone, and in fact easier to cope with than fibro), I think I might go back to my GP and have another go at sorting out the balance.

You may also like...