Looking for others with POF or Chronic Fatigue

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greenpeach06
greenpeach06 Posts: 1 Member
in Health and Weight Loss
I'm 32 and have Wegener's Granulomatosis (a life-long form of vasculitis), which is under control with medication but also leaves me dealing with mild-moderate chronic fatigue. And thanks to the chemotherapy and prednisone required for treating that, I was diagnosed with POF (premature ovarian failure) a few years ago. I just started HT last fall.

My hormones seem to have regulated somewhat, but I've gained about 20 pounds in the last 2 years. Some of that is due to a cross-country move this past spring (and living in a hotel for almost a month), but thanks to the hormones, I can't get either the scale or the inches to budge. I eat healthy, walk for 30 minutes five times a week, and workout vigorously twice a week when my illness allows. Unfortunately, some days the fatigue is so bad I can barely get out of bed, and on those days I also need to eat more carbs to keep my heart rhythm steady.

I'd love to find out how others deal with either POF or chronic fatigue. What have you found to help maintain a healthy lifestyle, despite the unique physical challenges of those diagnoses?

Also, would anyone else be interested in starting a group for something like this - a place to share articles or advice, empathy and encouragement, and perhaps accountability in keeping up with good habits?

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  • gentlygently
    gentlygently Posts: 752 Member
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    Hi

    I have CFS - started 2 years ago, lost job etc etc. Started after period of hormone horridness lead to mirena coil which my body hated.

    I have done a lot of 'spoon theory/energy management', a fair bit of just being patient with my body, a lot of building up my 'graded excercise', a lot of lying in bed (!) when I need to, and thankfully a lot of stress reduction (full time live in carers for the v elderly parents...).

    It is difficult to unpick what works of a this - prob a combination of it all, but I am really sure outting excercise high up the list if things to do when I can has really helped. i am now just getting towards some bed free days (as opposed to a post lunch crash) and feeling pretty darn good most mornings.

    I worked out my last weight gain (about 10 pounds) exactly equated to lying in bed for 2 hours every day...

    So - firstly - dont give up on tackling the CFS - the up to date medical advice works, albeit it slowly....(feel free to get in touch if you are not sure what advice I mean). And secondly you are so right to make excercise an important part of your day...

    I am tackling my weight gain really slowly. A very gentle increase in excercise goals (ie 'graded') each month and a gentle increase in sensible self control (not logging) eg cheese just twice a week, vast amounts of chocolate just once a month, and more modest portions of (ample!) treats. My health situation stressful enough without obsessing on this.

    So far so good - I have been losing a 'proper' (ie not water etc) pound or so each month. I am fitter and more confident in what my body will do.

    I hope that you find this encouraging... Good luck.
  • jesspow3
    jesspow3 Posts: 3 Member
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    Hey I think a group for those of us with CFS or similar would be super helpful! It can be difficult to stay patient with this kind of thing!! I've had CFS/PVFS/ME (whatever haha) for about 6 years now. I'd bare in mind that staying fit with exercise will not necessarily mean that you're protected from the crashes and whatnot that comes with CFS. I was an international swimmer and still became/become bedbound for periods. Finding your baseline for physical and mental activity is key to stopping the boom and bust cycles, the day time napping, and bedbound days. Allowing your body to recover is more important than the stats, the numbers, the time exercised. You might need to step back from what you're doing if you're having crashes regularly. Obviously if you have a stressful period or catch a cold or some other infection, that can cause crashes too, but those cannot be helped. You can control and reduce the bad days caused by over doing it though :)

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