Whether you are positive for Ataxia or a thyroid condition, exercise is the way to go.
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Itâs good to know medication is having a positive effect.
Is the ataxia linked to Hashimotos,
No I asked my doctor about it and she said it would have shown up on my blood work but I will ask when I go see my neurologist.
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This week I hav had a few very bad days.
Started with back pain which became increasingly worse I ended up in A and E by ambulance for tests.
Had all the usual tests - heart, blood
ECGs chest xray etc but apart from blood pressure - nothing.
I was sent home with no solution but am down to have an MRI soon. The pain continues and is extremely severe at times Coming in waves and very sharp.
The only thing that eases it immediately is my tens machine
Has anyone else experienced this please? I really think it must be neurological. Any help would be gratefully accepted
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I didnât experience pain for several yearsâŚI began to wonder what people were talking about. For a long time I was able to stay mobile (apart from balance issues) and Iâm sure that warded off pain.
After a year of enforced rest due to illness, my mobility worsenedâŚIâd spent too long without muscles being exercisedâŚstiffness and pain set in, mostly my legs but one arm is affected too.
Iâve heard TENS machines are worth trying for pain relief, as yet I havenât tried one, but I should think about it.
Itâs definitely worth being referred for investigation when thereâs a query about back pain, not all pain is related to ataxiaâŚwe shouldnât assume it is.
I hope this is resolved soonâŚLet us know when you get an answer.
Unfortunately, I also experience pain from sacroiliac down to my right knee. Sometimes it hurts like hell especially when I twist my body. I went to an Ortho MD and itâs not an injury but Arthritis. I can only attribute it to my long gait problem and age but it really has limited me. My only answer is that it is what it is. I just have to do the best that I can do.
Hi Issy, Iâve experienced severe back pain as you. Mine was due to many falls I have. I have extreme pain in my lower back. Looking at my diary, Iâve been to many doctors, had many MRIâs, 11 appointments with Acupuncture/Chiropractics, not to mention the cortisone injections, and I have an appointment tomorrow (virtual because I canât move) with another Doctor. I wish I had some suggestions for you. The only suggestion I have is get a good physical therapist to work on some exercises. I use an exercise peddler.
Hi Henry
I do hope you are able to get some help with your virtual appointment.
My pain I am now sure is some type of neurological pain. Sharp stabbing, tingling etc.
GP has increased pain killers and upped tablets for neurological pain.
I have had sessions with a neurological physio and follow exercise program. I too have an exercise bike- recumbent. I have been doing 5 miles daily since February- except the last few days. Do hope things improve for you.
Like Beryl said in one of her posts â I thought the worst thing about ageing was grey hair. IF ONLY!!
As I get on with years my balance gets increasingly worse - to be expected I guess 
. However, when I carry something (even light), my balance is off some more. I find myself touching walls as if I were drunk. Also, dark areas (nighttime) are tough to negotiate. I wonder if thatâs because of the Nystagmus. So getting up to urinate during dark night can be an experience.
Itâs much safer to leave a ânight lightâ on if you know you need to get out of bed in the dark. I have to do this because Iâm so disorientated in darkness and poor light.
Iâve been using a nightlight for years now.
Weather not good today. My Ataxia not so good either. Balance is more off today. Does weather affect Ataxia? Iâm not that familiar with weather changes or havenât paid that much attention to it.
Low pressure âŚseems to affect people, it does me too. Iâm inclined to feel more âheadyâ and tired. And because of this, I feel more aware of debilitating symptomsâŚ
Hopefully itâll soon pass.
Me too!!! I dont like it.
Some people find a âLight Boxâ can help during the short winter daysâŚ
I havenât tried one myselfâŚbut I do notice a downturn in ataxia symptoms at this particular time.
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Every now and then the Ataxia god gets mad at me and gives me a bad day. He (she) is currently mad at me. 
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Iâm sorryâŚ
This happens to me all too oftenâŚand the only comfort is knowing it will eventually pass.
I hope you feel much better very soon.
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Yes I get bad days too - I expect we all do!
My main problem at the moment is with emotions. My GP said I would probably have more âups and downsâ with Ataxia
I have a husband who unfortunately has Altzimers and I feel I am not able to cope at times. This is so difficult. Is anyone in a similar position? Lets all hope for more up days . Take care
Iâm so sorry IssyâŚ
In my experience, any âbump in the roadâ can cause symptoms to fluctuate and seem more difficult to manage.
This weekend I had a virusâŚit knocked me for 6âŚ
My power of communication was lost, balance went haywireâŚand I began to seriously wonder what was going on.
ButâŚemotional stress can be just as debilitatingâŚand it doesnât pass so easily.
Iâm a member of several Facebook Ataxia Support GroupsâŚand I do recall seeing posts from other members in your situation.
Having enough support yourself is very importantâŚhas your GP been helpful with referral to a support group for Alzheimerâs Carers
ButâŚ.Itâs just occurred to me that you may need assistance to get to a group. If I come across anybody else in the ataxia groups dealing with the sameâŚIâll let you know. xx