How do you deal with fatigue?
Hello everyone! I am curious and would like to hear about the different ways you deal with/ handle being fatigued. As for me I always seem to have a roller coaster type fatigue. One minute I can have all the energy in the world and the next completely drained.
Like today, I woke up super tired. Although I got 6hrs of sleep. I woke up around 7am and took a nap at 11am, woke back up around 1:30pm and had so much energy. I was able to go on a walk with my son and clean the house. But I know in an hour or 2 I'm about to be drained again.
Thanks for the Imfo is there a quick pick me up that could give me an afternoon BUZZ ? I always feel bad after the 3 PM hour ( out of nickels ).
Hey there! We are excited to welcome you and have you join this fantastic community. Do you currently or have you ever taken pyridostigmine (mestinon) for MG treatment?
Jodi, Team Member
I am only recently (less than a year).I take both Mestinon and Imran and up until the past week the only real changes in my life was to get at least 8 hrs of sleep per night. This past week no amount of rest has given me any amount of recovery. I have been told to increase my mestinon to see if that helps. Has anyone found your energy levels just change for no apparent reason and do you have any ideas to help?
Hey there 😀 We are glad to hear from you. Fluctuating energy levels are experienced by many individuals with MG, although all of a sudden change in energy is likely a response to an environment or circumstance change; if not sleep, as you mention, the cause could be stress, weather, infection, new medication recently, bright lights, or diet including vitamin deficiency. I would monitor your health for changes such as fever, coughing, shortness of breath, congestion, stiff neck, urination or bowel movement changes, skin changes, swollen lymph nodes, or nausea that could indicate the presence of an infection.
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What dose of mestinon are you currently taking, and how often? This could be a sign from your body that you need to increase the dose of current treatments or add another treatment. IVIG is used by many when symptoms are controlled with their current treatment regimen, but they need some extra help to control some unmanaged symptoms. Here are some articles with some ideas that could help you retain your energy levels: https://myasthenia-gravis.com/living/body-scanning, https://myasthenia-gravis.com/living/dont-waste-energy-stressing, https://myasthenia-gravis.com/living/minimalism, https://myasthenia-gravis.com/living/prioritizing-vitamins-minerals.
Jodi, Team Member
First, I honor my body and I see a mental health care provider. When I feel fatigued I take a nap, but my therapist helps me to discover, how; lifestyle and work concerns can worsten my MG symptoms. I have have had to learn to accept that my life has changed and I must delegate tasks. I can't "shop 'til I drop" anymore without calling 911. Instead, I identify the places I need to go and I choose which one or two I can handle today, not what I could handle last week. I have begun paying attention(write it down if I need to) to what I have been doing not only in the moment but over a full 30-31 days. I look for what caused the increased stress levels and how I responded to those situations. What caused me to use too much energy. I look for ways to reduce or eliminate such issues from my life. My therapist has been great with offering helping me in this area. Finally, the last concern is difficult and doesn't make sense when we consider what MG does to the body but don't skip the gym. Every physical therapist who works with people living with disabilities have told me the longer I can stay strong longer I can fight some of the MG problems including fatigue. Just start slow.
hello
, I love the idea of writing down everything you do and also writing how that specific task made you feel. I too make a "to-do list" everyday and cross out what I manage to get done. I don't go back and write down how that task made me feel, but I think that is something I want to start doing. I'm glad you have a good relationship with your therapist and it sounds like they really understand you and your needs which is a huge plus. Going to the gym scares me now. I used to be so active and go to the gym every other day. Now, I dont go at all. Last month I started going on morning walks but that only lasted a few days until I stopped. I found myself running out of breath fairly quickly, which scared me. I tell myself that running after my 2 year old is good enough. I do want to start exercising again but I'm not sure where to start.
