194/365 – Explaining fatigue and myasthenia 

Being fatigued is just the same as being tired right? Get a decent night’s sleep and you’ll be right as rain? It’s a hard symptom to explain because, in a world where everyone’s driven to exhaustion, how can you know if you’re in the grip of fatigue? It’s kind of like a migraine in comparison to a normal headache – a paracetemol isn’t going to cut it.

In my 190th blog, I tried to capture how feeling fatigued had stopped me from doing the duathlon last weekend. How it stripped away my strength and left me feeling like I was running on empty. Sadly, the fatigue has continued this week not helped by some late nights and having a few too many glasses of wine. I’ve tried to ignore it, doing my usual things – work, running, yoga, salsa dancing, Childline, learning bits of Spanish and even a bit of socialising (pictured above out for a cocktail with my lovely friend Kate last night). It’s been a fight. I’ve had absolutely nothing left to give and, while I’m glad to have kept pushing on, fatigue can stop me getting any enjoyment from things I know I love. 

It makes your head foggy, your body feel like a dead weight being dragged and can even make your words slur and tongue thick (handy for Spanish). Elaine pointed out that it’s probably to do with being on a lower dose of steroids but it doesn’t feel like the chemical induced blues of a few weeks ago.

Today, after a lovely catch up with Kate and with the prospect of a weekend in Scotland with friends and family, I can feel the grogginess lifting. If you’ve never been fatigued, I hope that’s always the case and if you’re currently in the grip of it I’ll send any surplus energy I have in your direction.

7 thoughts on “194/365 – Explaining fatigue and myasthenia ”

  1. Fatigue is just so horrendous. I describe it as ” heavy body syndrome ” or as if I am buried under wet sand. Such an effort to drag myself around some days and no amount of sleep shifts it when it’s really bad. Like you, I try to keep going as I would rather feel fatigued but satisfied that I have at least achieved something rather than waste time waiting for it to pass and have achieved nothing! It was 30 degrees here last night at 10pm and I just trailed around trying to find somewhere to go to sleep. Generally the sofa downstairs wins the battle!

  2. I know the feeling well! As a fellow MGer fatigue and being tired is just as different as being sleepy and being tired. Your symptoms are exacerbated and it is not always because of the medication difference but the environmental and mental stressors that you take on in your life. I have had to learn that in the last 2 years of having MG. I have learned that alcohol usually makes it 10 times worse for me during that time so I can only drink when I am at the top of my game not during my fatigue otherwise I risk crisis. That may not be the case for you. I also notice that when I rest more, find small enjoyable things (reducing stress) drink LOADS of water, and take all my medications at the same time each day I start to feel a bit better. If this doesn’t help I get an outpatient Plasmaphersis session and then I become 100% again. That is my life line right now. I’m not sure if that is an option for you but it works wonders for me and I’m usually feeling right as rain within 30-48 hours! I also tend to get more treatments though just to be ‘safe’ about 3 rounds in 7 days every other day and that way I’m super energized and strong. I hope you find something that helps soon.

    1. Hi, glad to hear that you are super energized and strong as an MG patient. As for me it is the contrary, I lack alot of energy, I can’t stand for long, I’m exhausted quickly. I’m on mestinon and azathioprine, but still no progress. Can’t do anything, feeling tired. Don’t know how to get energy. If you can help plz. Thanks.

      1. Hi, thanks for replying, so nice of you. I’m from Mauritius, far from you. I’m 60 yrs. Diagnosed on December 2014. Since that on Mestinon 3 tab daily. Azathioprine 50mg taken for 1 month and now 100mg taken 1 month again. Thymectomy done on March. Still not seeing any improvement. Now anxiety has taken over. And now i’m on lexamil 10mg. Don’t know how to cope with the disease. Best regards.

      2. Well it takes times to see the improvement. The immunosuppresants take 1-2 years to work properly and that gave me anxiety too. I am just becoming fully stable after being diagnosed in october 2013 and I never had a thymectomy. I take mestinon evey 4-6 hours where I use to take it exactly at every 4 hours because I was that bad when I first was diagnosed with a timespan for over night. You are in my prayers. I’m 30. I also get plasmapheresis as an outpatient when I feel really weak as an option so that I do not have to be hospitalized, I’m not sure if that is an option for you.

  3. Thanks for reply, I am only 2 month on immunosuppressive drug. Have to wait for 2 or 3 years as you say. Heard about plasmapheresis, but in my country this treatment is not available. There’s only a few people with the disease. I have to manage with the mestinon itself. The side effects are so awful, diarrhea, frequent urination etc. Is taking supplement of choline helpful? Thanks a lot again for your nice advice and help. You too you are in my prayers.

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