Disease change over time

  • How do you feel your symptoms have changed over time? Have they fluctuated but overall stayed mostly the same? Gotten obviously worse? Gotten obviously better? Something else?

    For me it's complicated, because over time I've learnt more about my body and discovered lifestyle changes and medications that improve some of my symptoms even as they get worse or new ones develop.

    But if I look at my functioning, it's clear that I've been getting worse in a progressive fashion.

  • @river It can be so different for each of us, can’t it? The biggest factor for me has been the way uncontrollable circumstances have shaped the demands on my energies. Like you, I’ve found medications or improved strategies to manage my symptoms, etc but those uncontrollable factors have definitely led to me being more unwell now that I was when I first got sick. It’s nice when we get to hear stories of those who have been able to experience sustained improvements in their functioning, that brings some hope 😊

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    I tend to think of it as my baseline is getting progressively worse over time. So the bad days haven't gotten worse but there are far less good days and energy packets are getting smaller and smaller. Though have to say its amazing what you can adapt to and be grateful for.

  • @gretch oh yes this is similar to me!

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  • @gretch I totally agree. We have all had to adapt to this new normal, a world that is sometimes no more than four walls, and often for years on end. I say we are a pretty strong bunch of people.

  • Hi @river. I haven't had ME/CFS as long as many (about 3 years for me) but there was a definitely progression of worsening for me with possible stabilisation in the past year. From still managing to work full-time to 4 days to 3 days to extended sick leave to medically unemployed. I think a lot of the worsening in the first year or so was a definite inability to understand (or accept) my limitations and the impacts. I think I grew up with a type of stubbornness that comes with the push-through-the-pain type culture which did not help. I've eventually learnt to stop that sort of thinking so hopefully thinks will keep more stable now (though still fluctuating regularly). Glad to hear other's experiences too

  • My symptoms are the same as I have had me/cfs for over 20 years however I have developed due to long term illness (disease) a lot of secondary conditions that relate to it. e.g food intolerances and chemical sensitivities only in the last 5 years. In the last 7-10 high blood pressure, cholesterol, fatty liver disease, allergic conjunctivitis, severe hay fever, chronic progesterone deficiency, uterine fibroids, gall stone, pre-diabetes, lack of gut enzymes (proteases) etc. Unfortunately I do not have Private health to address some things until they become an 'emergency'. Fatigue wise, it fluctuates over the years and changes from day to day.

  • I can relate to time being an important factor in my overall experience of living with ME/CFS. I have experienced a significant change over time. I have been getting worse as the years go by.

  • It’s definitely a journey. For the first few years, it got progressively worse, and it felt like there was no end in sight. But then it plateaued and I learnt to live with it. It still fluctuated a great deal, there would be months where I was essentially housebound, weeks where I could neither summon the energy nor motivation to get out of bed. And then some days, I’d manage to summon a burst of energy and appear relatively normal, well, with at least a week of catch-up. Over time, however, my ability to have a big day (by my standards, I mean leave the house) go to sleep, wake up the next day and do it all again has improved drastically.

    I think this can be attributed to a number of things. My doctor, she’s been practicing what can be called nutritional medicine, and for many things it has been a very, very slow build up. (For example, my vitamin d was a 10th of the minimum normal amount - I was shocked, finally a test that showed an abnormality!) I take about a dozen things a day, most of them are not prescription, just carefully selected minerals and vitamins that my doctor thinks I need, and I think it has been working. The biggest marker is how several years ago, according to those blood pressure reading devices, I didn’t even have a pulse, well maybe just one when I lay down, but now it appears to read normal. It still comes back to bite me when I don’t look after myself, but it’s amazing.

    This takes me on to the second point, I’ve learnt how to read myself, to wake up in the morning and assess, “can I do this today?” It has taken trial and error and a lot of anguish to reach this point. I have my family well trained, they understand that if I tell them it is a bad day, or a bad week, I mean it. I plan things so I only have one activity in my day, like an appointment, with at least a day’s buffer in between if I can manage it. And this makes it so much better, I no longer tire myself out trying to get it all done.

    I think I’m fortunate in that it has improved. I will have a down turn, it is inevitable, but it is always two steps forward, one step back. I still make progress. And I feel like I’m over the worst. (It’s a great feeling)

    I can’t remember what it’s like to be truly healthy, but I can recall what it’s like to be unable to lift my head off my pillow, and I mean, trying and failing to lift my head. Every day I’m grateful for what I have now.

  • @RatsAreFluffy thank you for sharing your experience! I'm still in that volatile first couple of years and it feels like there is no end in sight just like you said. But I also take lots of supplements and have started to find some things that help a little (no thanks to my doctors though - that was all the patient community's doing). It gives me hope that your symptoms did eventually plateau.

  • @RatsAreFluffy Thankyou for sharing. You have inspired me to keep being pro-active in chasing some sort of balance. I admire your dedication towards progress, knowing how hard it is to stay the course. Today I am grateful to you for reminding me to keep seeking "that great feeling".

  • I have progressively worsened. Look, I feel that I have had ME all my life. Even as a kid of 10 I struggled to make a full week at school. I was even taken to a head doctor when I was 10 because no one could figure out why I didn’t want to (couldn’t) and struggled to go to school from Thursday onwards and why I seemed perfectly well in school holidays. They all believed I had psychological problems, they mostly still do, and I’m 62 now. I barely made it through high school , if they made me do PE and sports I was screwed for days after, if I went for fours days in a row it was unusual. The school even investigated my lack of attendance. I lasted in my first full time job for one year, when the winter came I crashed and couldn’t get out of bed. My father and his mother had this too, and my own mother believed they were both malingerers, so I got that label too. I have never been able to keep a full time job. I’ve gone through times of a kind of remission where I did better, but I think maybe that was a matter of how life was going. I had two kids, it was hard, when they were young I spent most weekends in bed. But sooner or later I would crash very badly and every time I’ve had a significant crash I’ve become a little worse. My big one came when I turned 50. I had a serious of major life events that I seemed to sale through, but as soon as things evened out, I crashed, majorly. I haven’t gone back to how I was before that, it’s been over 10 years, and I am now housebound and can only function on a very basic level, sometimes even not that if i happen to overdo or the weather is cold and wet. I have been diagnosed with autoimmune arthritis, fibromyalgia and chronic fatigue syndrome. Biologic treatments for the arthritis has helped me a little. But I am still gradually getting worse, maybe some of that is natural ageing and lack of fitness but my PEM is far more easily triggered now and takes much longer to recover from to my latest baseline. The baseline is getting lower too. I fear for my future. My grandmother lived on to 92, the last 20 years of her life she was a vegetable in a nursing home.

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