Hi. Does anyone else have lots of fatigue, especially on rainy or snowy days? I’ve not logged in for a while. I had surgery last August & now I’m in long term care.
Hi Geri I’m a member of several Ataxia Support Groups, and people regularly report feeling fatigued. It doesn’t seem to be related to one specific type either. I’ve had occasions when deep fatigue has hit, and can say it took weeks before I felt capable of returning to ‘ the new me’ During the dark winter days I usually experience a drop in the ‘feel good factor’ and now I’m just hanging on in there till Spring Dont forget, Surgery will likely have a knock-on affect. A few years ago, I had surgery/chemo/radiation, only now do I realise how long it’s taken to feel ‘me’ again Best wishes xB
Hi Geri, fatigue seems to be the norm with most ataxic conditions. I suppose that it is our body’s reaction to continuous compensation to balance/coordinate. It makes sense that we experience this even more after surgery as our bodies attempt to recover. It’s like all the energy goes into this recovery, and forgets we have to function as well. Fatigue seems to be magnified during periods of cold/damp/hot weather, I think our bodies work extra hard to adjust and correct to the current climate. With some conditions, sweating is limited or non existent, so the body has trouble regulating temperatures properly as sweating is part of the body’s natural thermostat. Damp weather seems to aggravate my arthritis, something I’m blessed with along side MSA (yay me!). Cold, damp, weather appears to be common amongst most arthritis sufferers. For what ever the reason, fatigue hits at the most inopportune times! and usually hampers daily activities/plans.
Thank you Beryl & Hutchy. Yesterday was terrible. Today is looking better so far.
Yes, I totally agree that our illness has a lot to do with fatigue. I also think that we have to work harder to have a “normal” life and that takes a lot out of our bodies so we get knocked out faster.
Yes Geri when the weather changes, so does my Ataxia.
Last year my daughter attempted suicide. I, my father, my aunt, and potentially some of my children (I haven’t told them of my diagnosis) have SCA1. I had symptoms of my disease last year. Today I am symptom free, and my aunt and my father have stopped progressing, and my daughter is on the Honor Roll at Northeastern University. I believe in “alternative therapies” otherwise known as “micronutrients”. You should never try anything based on the comments of some random internet quack, but if you are interested just talk to your doctor about “alternative therapies”.
Joe, I’m very sorry to hear of your family history. I’m glad to learn your daughter is now well and achieving at University While I realise you have the best of intentions with the links, please restrict them to your initial post on Complimentary Therapies xB
Yes, I agree with all these comments which also concur with my neurologists advice… notably our body has to compensate which depletes our energy.
I am lucky in that I am able to do things in the morning, my husband cooks lunch and I drag myself into the kitchen to clear up or check his ‘standards’… then I make a decaf coffee. Caffeine would be lovely but it has adverse affects on me. After coffee I play hypnotherapy and usually nap for an hour, It’s short day in Winter, In summer we go for a drive and walk. Hang in there, pace yourself and make the most of what energy you have. Best wishes, Patsy
As Ataxia takes upto 100% of your concentration, it may. also sap your energy.
Any minor or major health issue will require some or all this energy (hence there is not enough to go round)
There will be many ways to counteract this and it will vary person to person.
Share your symptoms with a medical professional to see if there is something that can be done.
Hello again, I went through chemo 4 years ago. Although I started having signs before the cancer had been found, it really started in after the chemo. I’ve never been the same and my asshole neurologist kept telling me it’s was all from the chemo and there was nothing wrong with me and I needed to get over it an move on. I finally went to get a second opinion out of town and he came up with this. Did your symptoms come on after your cancer treatment?
Some Neurologists are brilliant, some just don’t listen properly, and others are just plain callous. I suspect you’re not alone in seeking a second opinion. The first one I saw specialised in Epilepsy ( because I’d had a seizure), and she was awful If she’d really listened to me, and put 2 and 2 together, it’s possible things might have been very different.
I’d been experiencing ataxia symptoms for almost 20yrs, and been diagnosed for 3yrs, before cancer was detected. I know I don’t carry the BRCA gene but I am linked to a mutant gene called SYNE1. This may be the partial cause of my ataxia.
Testing for Episodic Ataxia is specific, and diagnosed by a blood test. Currently, 7 types of EA have been identified, have you been linked with a specific type xB