Lost my balance

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SarahTaylor
Posts: 4
Joined: Thu Aug 15, 2013 6:41 am

by SarahTaylor on Thu Aug 15, 2013 7:04 am

Lost my balance

One night last week, I woke up and could hardly walk to the toilet. It was like being on a ship. there was no spinning sensation or nausea. It hasn't improved much. Get's bad after I've been up a few hours and had coffee and carbs. Much better in the evening after hours of just sitting around, and at night. GP said I had no nystagmus. Taking a little diazepam but trying to keep moving as much as possible.

I had something like this a few years ago and the only thing that helped was hardly eating carbs (anti-candida diet). I weigh 40 kilos so need them now.

I think this is my worst symptom of my CFS. Stugeron makes me feel ill. Stemetil a little better but GP prefers me not to use it while I can still walk a little. I'm a bit clueless about what this is and what I can do other than to keep going. Last time, consultants had no idea what it was. I refused balance tests as friends had them, they made them feel worse for weeks and no one benefited from results which were often normal. I feel imprisoned in my house at the moment. Any advice? Otherwise, I'm not too bad if I pace myself.

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Dr Charles Shepherd
Posts: 215
Joined: Wed Aug 07, 2013 11:30 am

by Dr Charles Shepherd on Thu Aug 15, 2013 10:31 am

Re: Lost my balance

Sarah

Problems with balance - often described as unsteadiness/walking on rubber/feeling drunk rather than spinning round - are a very characteristic feature of ME/CFS and there has been some research carried out into this aspect of ME/CFS

This indicates that in some cases balance problems may be caused by what is called vestibular dysfunction. This can be assessed initially buy examination in the surgery.

If you want to follow this research up there is more information in the MEA booklet: ME/CFS/PVFS - An Exploration of the Key Clinical Issues and in 'Living with ME'.

Unfortunately, treatment with either drugs (Stugeron, Stemetil etc) or balance exercises in ME/CFS tends to be of limited value

This is a symptom that should always be carefully assessed and (where appropriate if more severe) investigated in hospital at an ENT (ear nose and throat) department

Speaking as a doctor with personal experience of this illness, balance problems in particular, I can sympathise with what you are saying and the frustration at not having an effective way of relieving this particular symptom

MEA website and pdf literature order form: http://www.meassociation.org.uk
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

SarahTaylor
Posts: 4
Joined: Thu Aug 15, 2013 6:41 am

by SarahTaylor on Thu Aug 15, 2013 4:51 pm

Re: Lost my balance

Thank you.

kell6357
Posts: 1
Joined: Thu Aug 15, 2013 8:58 pm

by kell6357 on Thu Aug 15, 2013 9:10 pm

Re: Lost my balance

Sarah,
I too have had a lot of balance concerns. My kneecaps have suffered, and finally I decided a walking stick was the safest. It has saved me more than once.
Kel

Dolphinmum
Posts: 7
Joined: Thu Aug 15, 2013 9:11 pm

by Dolphinmum on Thu Aug 15, 2013 10:40 pm

Re: Lost my balance

Yep I sympathise as its a nightmare this balance issue. Half the time I feel drunk (don't drink) and half the time I feel like I've been on a roundabout and got off too quick. I hate the feeling when I'm say eating or watching TV and everything around me is moving but I feel like I'm in a time zone and stationery, trance like. I've used a stick for two yrs now but on hols I finally surcumbed to a wheelchair as both heat and symptoms overtook me. I am prone to Labrynthitus and when this happens end up on all 4s unable to stand, usually beeing sick :(

Housemouse
Posts: 26
Joined: Wed Aug 14, 2013 5:30 pm

by Housemouse on Fri Aug 16, 2013 2:25 pm

Re: Lost my balance

Same here - I've frequently been told I look drunk, 'summer grazing' is a darwback, (short sleeves and therefore skin meeting walls) I've found a lot of it is to do with 'over doing it' (how ever long or short it may be) and have yet to find anything that will help quickly - door frames are n0t where I think they are etc., knocked myself out once, and for some reason tend to fall to the right (never to the left that I can remember), I found a stick too difficult - a bit like having three legs, so in the end, when I was awarded DLA mobility I bought myself a power chair to use around the house and it's helped tremendously - I can get from room to room without mishap. In the longer term (if it happens more frequently - the nhs physio (long live the nhs!!) taught me Cawthorne Cooksey excercises - also my super GP taught me to gently touch walls or surfaces - I'm sure he put it in a much better way - but basicially it's to send a message to the brain about which way is 'up'. It definitely helps - even better when wearing long sleeves.

Dolphinmum
Posts: 7
Joined: Thu Aug 15, 2013 9:11 pm

by Dolphinmum on Fri Aug 16, 2013 4:15 pm

Re: Lost my balance

Housemouse, I understand what u say. I didn't remember til u said about the doorways and walls which I tend to brush along, bang into cupboards and then wonder where all those bruises came from. I use a stick outside for about 1m if I'm lucky but tend to furniture walk in the house. I've just had grab rails and stair rails fitted since I've got worse since March when my DLA application was refused. Although now I have an actual Ltr from consultant confirming DX of fibro and CFS. I so have access to mobility scooter from BiL so I can get out but usually go with eldest son as get confused and anxious.

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