sleepytrex
New member
- Joined
- Sep 6, 2021
- Messages
- 8
- Reason
- DX CFS
- Diagnosis
- 10/2016
Hey - was diagnosed with ME in 2016, just had a diagnosis of fibromyalgia as well. At the time of my ME diagnosis I had never heard of fibromyalgia, and was focussing all my efforts on trying to keep my career, plus we had a baby on the way, so I never really stopped to consider why I was in so much pain all the time, particularly in my feet, knees, hips and back. About 18 months ago my wife persuaded me to visit my GP to tell her about the pain I experience, which then started the long process of receiving an official diagnosis of fibro, which I got a few weeks ago. I'm being referred to a pain clinic and the rheumatologist has also suggested to my GP that I consider anti-anxiety medication for the pain (the name escapes me).
I ended up losing my job as a teacher after 2 years of struggle with both my own body and with HR at the school, which was a pretty horrible time in my life and has left me with some PTSD. I'm pretty much bedbound now, and spend probably 98% of my time in bed. I can still manage short drives and the odd very short walk with my 2 year old daughter. My wife has become my de facto carer and provides the vast majority of the childcare.
After being initially misdiagnosed with depression and work-place stress, I was placed on increasingly larger amounts of sertraline, which, alongside being unable to exercise, caused my weight to balloon. I also get ravenously hungry during my crashes, and crave carbs of any kind. Prior to becoming ill I ran half marathons and ran about 40 miles a week, so never had to worry about what I ate. I always used to get people commenting on how skinny I was and how I should eat more. Not anymore!
I had a really good period last summer where I was even able to start yoga, which was a huge step for me as even mild physical exertion causes me to soon begin to violently retch. I also went vegan, and as I wasn't having to put all of my willpower just into getting through each day, was able to concentrate on losing weight by being incredibly strict with my food intake. I also wasn't feeling ravenously hungry all the time. I managed to lose over 4 stone and, although I had to be really careful, I felt like I had reached a stand-off with my ME/fibro. I started to feel good about my appearance again and was able to do more things with my daughter, like visit the park.
Boxing Day 2020 I had my most severe crash since my first initial crash and it hit me like an absolute sledgehammer. I had been very careful not to overdo it over the Christmas period and can't really point to anything as the cause of my crash, although I rarely can pinpoint one thing. Even visiting the bathroom was causing me to violently retch, and I was in so much pain from the fibro that it often caused me to burst into tears. My knees felt like they were on fire and wouldn't function properly (I fell down the stairs twice) and my feet felt like they were constantly cramping. I struggled to fall asleep at night due to the pain. This continued every day until about April of this year, when things started to ease up very slightly, although this is still the worst I have felt in years. Mentally it was incredibly difficult for me, and a couple of times I've told my wife that I didn't want to go on living anymore. I'm not depressed, it's just that this condition is so incredibly depressing. I've also slammed on all of the weight again as 'the hunger' came back with a vengeance, plus I haven't been able to do any exercise and have been stuck in bed all day.
I've shied away from forums after some initial bad experiences. People offering advice, such as eating this vegetable or taking that supplement or trying mindfulness or yoga or whatever it might be. I've tried pretty much everything, including CBD, going vegan, taking daily vitamin supplements, mindfulness, meditation, yoga (when able to, as even chair yoga is often beyond me). When I've explained that I've tried so many things and they just haven't worked for me, I've faced a lot of people accusing me of being a victim and not wanting to get better. This could not be further from the truth. I would love to be able to go back to teaching, which was my vocation and something I was bloody good at. I would also love to be able to take some of the financial burden off my wife, and do all of those things I want to do with my daughter but can't.
Anyway, if you're still here thanks for listening, and although I can't really offer any advice, I at least understand how debilitating and depressing this condition is for you. I hugely respect anyone struggling with this condition just for getting through each day and dealing with all the BS that comes along with it.
I ended up losing my job as a teacher after 2 years of struggle with both my own body and with HR at the school, which was a pretty horrible time in my life and has left me with some PTSD. I'm pretty much bedbound now, and spend probably 98% of my time in bed. I can still manage short drives and the odd very short walk with my 2 year old daughter. My wife has become my de facto carer and provides the vast majority of the childcare.
After being initially misdiagnosed with depression and work-place stress, I was placed on increasingly larger amounts of sertraline, which, alongside being unable to exercise, caused my weight to balloon. I also get ravenously hungry during my crashes, and crave carbs of any kind. Prior to becoming ill I ran half marathons and ran about 40 miles a week, so never had to worry about what I ate. I always used to get people commenting on how skinny I was and how I should eat more. Not anymore!
I had a really good period last summer where I was even able to start yoga, which was a huge step for me as even mild physical exertion causes me to soon begin to violently retch. I also went vegan, and as I wasn't having to put all of my willpower just into getting through each day, was able to concentrate on losing weight by being incredibly strict with my food intake. I also wasn't feeling ravenously hungry all the time. I managed to lose over 4 stone and, although I had to be really careful, I felt like I had reached a stand-off with my ME/fibro. I started to feel good about my appearance again and was able to do more things with my daughter, like visit the park.
Boxing Day 2020 I had my most severe crash since my first initial crash and it hit me like an absolute sledgehammer. I had been very careful not to overdo it over the Christmas period and can't really point to anything as the cause of my crash, although I rarely can pinpoint one thing. Even visiting the bathroom was causing me to violently retch, and I was in so much pain from the fibro that it often caused me to burst into tears. My knees felt like they were on fire and wouldn't function properly (I fell down the stairs twice) and my feet felt like they were constantly cramping. I struggled to fall asleep at night due to the pain. This continued every day until about April of this year, when things started to ease up very slightly, although this is still the worst I have felt in years. Mentally it was incredibly difficult for me, and a couple of times I've told my wife that I didn't want to go on living anymore. I'm not depressed, it's just that this condition is so incredibly depressing. I've also slammed on all of the weight again as 'the hunger' came back with a vengeance, plus I haven't been able to do any exercise and have been stuck in bed all day.
I've shied away from forums after some initial bad experiences. People offering advice, such as eating this vegetable or taking that supplement or trying mindfulness or yoga or whatever it might be. I've tried pretty much everything, including CBD, going vegan, taking daily vitamin supplements, mindfulness, meditation, yoga (when able to, as even chair yoga is often beyond me). When I've explained that I've tried so many things and they just haven't worked for me, I've faced a lot of people accusing me of being a victim and not wanting to get better. This could not be further from the truth. I would love to be able to go back to teaching, which was my vocation and something I was bloody good at. I would also love to be able to take some of the financial burden off my wife, and do all of those things I want to do with my daughter but can't.
Anyway, if you're still here thanks for listening, and although I can't really offer any advice, I at least understand how debilitating and depressing this condition is for you. I hugely respect anyone struggling with this condition just for getting through each day and dealing with all the BS that comes along with it.