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Chronic fatique Syndrome?
Never occurred to me that I might have this, brought on by a change in an autoimmune disease such as MG. One of the main symptoms is having a good night’s sleep and waking up tired. On top of that, into my 10th night with a BiPAP and certainly greatly reduced those apnea events dramatically, and having at least 8 hours sleep. I have brought this tiredness factor up before and many here state they have noticed the same, and it’s definitely caused by MG which I get the impression my Neurologist is not of the same opinion. More like it’s a combination of steroids, mycophenolate and mestinon(all greatly reduced now). My IGG levels were very low after a series of vyvgart(injection form) and stopped that now and back on IV version) and had 2 days of IVIG which brought them up again and thought that was the main issue……concerning my tiredness and to a certain extent weakness.
Apparently not, as again this morning, after being up for 30 mins I’m back in bed again and legs are weak and I’m just lethargic and have to force myself to do something. Yawning my head off as I type this, this isn’t me at all, and eyes getting slightly worse as script on TV is blurry.
Perhaps overacting, I don’t know, anyone here with similar?
Onwards.
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8 Replies
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I have ongoing problems with fatigue but believe that it is because I can only sleep about 2-4 hours at a time. I never sleep through the night. I do exercise regularly – cycling – I always start off slow and tired feeling but after a few miles I feel very good. My breathing and sinuses improve.
That said, the next day I am v tired. Day two is worse, then I am ok again.
It is a new world for me.
I hope that you feel better soon.
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Hey there! I have ME/CFS and generalized ACHR positive MG. I know ME/CFS is a hard diagnosis to get but I had the same experiences as you and I knew something wasn’t right. I traveled to Mayo Clinic and they diagnosed me and finally I felt like I was understood. I tried Vyvgart and it put me back in the hospital. Now I am on IVIG every three weeks. Hang in there and no you’re not alone!!
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Did the MG cause the CFS or have you had this before? Plus how is your vision as mine is deteriorating and quite rapidly. I have fluid building up in both retinas( macular edema and central serous retinopathy)caused supposedly by taking steroids. In March went to my eye person who said the fluid had increased slightly but since my vision was still pretty good(which it was at the time) didn’t want to do any laser treatment. Fair enough but the last month, I just don’t know what has happened as I was down to 5mg of preds but Neuro raised that to 7.5mg..
Wondered also if there was any connection to just recently(nearly a month now) been fitted with a BiPAP machine and the mask I have, a certain amount of air may leak into my eyes??) Anyone else have issues?…….anyway, sorry this possibly should have a separate thread as turned into my eye issue as opposed to CFS, which I am slightly better than previous, due to of all things, perhaps sleeping better as apneas greatly reduced.
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Hey, I’m also a female under 40yo with ME/CFS and generalized (AChR positive) MG, since 2009/2010. I went to Mayo Rochester in 2011 after MG diagnosis for another issue, but was seen by neuro & surgery (consult for thymectomy). Did Mayo do anything to treat ME/CFS? They didn’t touch it, nor would anyone else for years, so I’m curious as to whether Mayo has any treatment or ways of mitigating this insidious, debilitating illness.
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Go to a pulmonologist and have your respiratory function tested. I developed acute respiratory failure from MG (I also have Lambert Eaton syndrome which may be worth getting tested for – the medication for it – Firdapse – helped me quite a bit on top of Pyridostigmine, IVIG, Plasmapheresis) which then turned into chronic respiratory failure = extreme fatigue. Yeah, oxygen kinda important, it’s just I didn’t realize my respiratory function was so poor until I was in the ICU. I was on BIPAP the entire time. In and out of ICU and hospital kept having MG flares with worsening respiratory function. 6 months later a respiratory therapist while I was in the hospital suggested I get a non-invasive ventilator. Long story short my respiratory function was so poor, the pulmonologist did prescribe a non-invasive ventilator. It’s called an Astral and they described it as a BIPAP on speed. At first I needed it during the day, and now I primarily use it at night (replaced the BIPAP) with a BIPAP mask. Has improved my respiratory function (as long as I use it every night) quite a bit, and thus my energy. The saddest part about all of this is I am a physician, and I could not find anywhere I looked that testing respiratory function (and supporting it if needed) in an MG patient is standard of care even after being in acute respiratory failure.
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I take trazodone 100mg once at night and take Melatonin. I get a good nights sleep but nap in the afternoon.
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I developed ME/CFS around the same time as MG — I had a positive ANA & over-training injury (rowing) in spring 2009, traveled abroad in summer, and then my health quickly deteriorated upon return in the fall. By spring 2010, I had dx of generalized MG and Hashimoto’s Thyroiditis; I had a bunch of other bizarre, unconnected symptoms which required additional investigation. I was diagnosed with ME/CFS at Georgetown, but never really have had it treated, even during my appt at Mayo Rochester (2011). It remains this insidious shadow that still significantly limits my existence. Consider checking out this quiz by the advocacy group for ME/CFS: https://solvecfs.org/me-cfs-long-covid/do-i-have-mecfs-quiz/ (link still works for me)
solvecfs.org
Do I Have ME/CFS? Quiz - Solve ME/CFS Initiative
Take our short quiz to see if you may have ME/CFS.
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I agree with your neurologist.
My very first symptoms were just that, get up in morning, take shower, go back to bed. I too was told I had chronic fatigue syndrome.
I wonder if once you get on a steady medication of the VyVgart and others you may be taking, you get right again. Even vyvgart can take time to get in your system to work magic, and I find that it is not always consistent.
Good luck.
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