Not as this overly matters but I'd like to know....

[lloydyuk]

I continue to suffer with fatigue admittedly it's improved massively however as the day goes on my battery dies very quickly after roughly 2pm and it drives me mad.

Unfortunately I have 3 main conditions that affect me all make reference to fatigue as a major symptom so I'm not sure where to start to possibly. Improve.

1- Hughes syndrome.

2. Cerebellar haemorrhage (acquired brain injury) brain infections causing cerebellar ataxia.

3. Adrenal haemorrhage, causing Addison's disease. (Non functioning adrenal glands)

As I tire my balance fails, my muscles stiffen, speech becomes slow/slurred and finally I twitch (Due to myoclonus) and Ataxia which is painful. It radiates or seems to from my diaphragm area. I'm told during my initial hospital phase the spasms were so violent 2 close friends had to assist hospital staff by stopping me bouncing off the bed onto the floor. Apparently I was lifting off the surface of the bed with a stupid amount of power.....scary.

Thanks for listening, I'm open to any suggestions. I should mention I keep as fit and active a I can and I am back to exercising 3 times a week plus a fairly active home life....

[Manofmendip]

Hello and welcome

Some of our members will, I'm sure, offer you advice soon.

Best wishes.

Dave

[Herb]

You could get a referral to neuro physiotherapy who can advise on the stiffening muscles and twitching, also an occupational therapist can advise on managing the fatigue.

Do you see a neurologist? they may be able to suggest education to help with the musclulor problems.

Also Ear Nose and Throat could check you out to see if there is anything they can help with the balance side of things. You don't say where you live, the access to these specialists is variable throughout the country but in the first instance talk to your GP.

[Herb in reply to Herb]

sorry typo should have read "medication to help with the musclulor problems."

There are all kinds of ways of coping with fatigue but I do think it would be good to all it over with an occupational therapist and then it can be directly tailored to your needs and you get that one to one support.

[GinaD]

I'm impressed that you are exercising several times a week and still looking for solutions! I agree with the above suggestions about consulting a physical therapist, occupational therapist and other specialists. What you can't fix you can adjust to -- giving the proper attitude. Which is appears you have. Brilliant! There is a big emotional gulf between the word "resignation" and the words"acceptance;," and "adaptation;" a gulf which many of us on this forum seek to recognize and bridge.

And do keep us apprised as to your progress. We all have varying symptoms on that huge spectrum of Hughes symptoms, one of the most annying being fatigue. And it can be hard to communicate with friends and family what "fatigue" means to autoimmune patients. Its not just a tiredness we can push our way through. I try to describe it as "bone deep fatigue." But here on this forum, we all know what the word means. And we all share and root for each other -- trying to share solutions and adjustments that help us bridge that gulf.

[lloydyuk]

Thanks for your replies all much appreciated. Ironically I was lucky to have spent 3 months in an intensive brain injury therapy unit in Bristol. I have outpatients therapy at a therapy unit also in Bristol. I've been discharged by most specialists and continue independently with some great teachers for my own 'stuff'.

I have been told Ataxia is rare as is CAPS and Addisons lol.......and currently as you will know there are no real cures for any only best management of each.

I know I should be grateful for what I can do and I honestly am, I won't be fully happy however until I feel I have my full time energy back.

I manage my fatigue fairly well and as I mentioned it's improved since attendance at the head injury therapy unit I mentioned.

It's 2 years of this new year so perhaps I'm expecting too much? Just how I am I guess, I strongly feel we are all responsible in the main for our own health with the help of others secondly. If the first bit isn't there we aren't going to get far surely.

[daisyd]

Hi I could sleep for 20hrs a day given the chance but for balance problems which included falling almost daily I was commenced on Hydroxychloroquine and noticed the difference in 3 days, it doesn't have any effect on my energy but balance is so much better, I have cerebral Hughes syndrome worth a thought

Good luck

[MaryF Administrator]

Hi you sound as if you are doing brilliantly and do they look at your Thyroid with all this going on, as it is common with Hughes Syndrome and at times does not show up with the TSH test? I have awful fatigue but find that if I exercise one day, I must rest the day after, although sometimes it is better. MaryF

[lloydyuk]

Thanks again, I'll look into the thyroid issue at my next appointment. At the least no harm in checking!!