Hi all,
For the last 8 years I've been suffering with a mystery illness. Originally I was told it was CFS but as time went on and more strange symptoms emerged doctors began to doubt the diagnosis and I'm now back to trying to figure out what the basis is for all my problems. I've since realised that I've been ill from a very young age, at least 7 years old, but didn't become seriously ill until I was 20. I'm now 28 and am no closer to getting to the bottom of it.
I was hoping I could list some of my stranger symptoms that doctors are perplexed by or just don't want to engage with in the hope that someone may recognise them and possibly give me a starting point for where to go next.
Symptoms:
The majority of tests I've had done have come back normal, and I've had many! The abnormal ones were the seasonally fluctuating ESR, CRP and Neutrophils I mentioned earlier, a low FSH, raised Cortisol, and one time my liver enzymes were very high but they corrected themselves. But that's about it. Tilt table test ruled out POTS but I do get an increase in heart rate when I stand. Lots of autoimmune disorders ruled out, MRIs and ultrasounds showing nothing, and yet I'm so incapacitated I can't leave my house and can do little more than sit around and watch TV all day being looked after totally by my ageing parents.
Oh, and I don't get and have never had any pain, headaches, sore throats, depression or brain fog. In fact I'm pretty sure my memory seems better since I've been ill!
My sister has recently been diagnosed with a thyroid problem. She has a large goitre, nodule and thyroid antibodies. My dad also has thyroid nodules. I thought with the close family connection that might mean something but again, doctors don't seem bothered. No doubt because all my thyroid blood tests are normal.
Is it possible I have CFS/M.E.? I'm convinced I've been ill since I was very young, quite possibly birth, and it showed up in small incidences sporadically until I became very sick at 20 - could CFS work like that? Can you be born with it? Could it be keeping my weight so low? And have done so since I was a child? Does it cause all over hair loss? And just generally do my symptoms sound like it or something else entirely?
If anyone has any ideas or thoughts on some of these symptoms and there possible causes I would massively appreciate it.
Thanks! (Apologies for the length of this post!)
For the last 8 years I've been suffering with a mystery illness. Originally I was told it was CFS but as time went on and more strange symptoms emerged doctors began to doubt the diagnosis and I'm now back to trying to figure out what the basis is for all my problems. I've since realised that I've been ill from a very young age, at least 7 years old, but didn't become seriously ill until I was 20. I'm now 28 and am no closer to getting to the bottom of it.
I was hoping I could list some of my stranger symptoms that doctors are perplexed by or just don't want to engage with in the hope that someone may recognise them and possibly give me a starting point for where to go next.
Symptoms:
- Nervous system overreaction - this is going to be the strangest of them all and will probably make me sound insane, so I'll start with it. My nervous system has been doing some really weird things. From day one of becoming ill whenever I went to use and look at a computer screen I would get what felt like a huge release of adrenaline. I would sweat and shake uncontrollably, my heart would race and pound, and I'd have to go to the toilet and awful lot. This would happen without fail every time I looked at a laptop or computer screen. Then after 5 years completely out of the blue it stopped, and I could now look at computers again. However I began to get the same reaction if I listened to the radio! It had just switched. But it's specifically the radio. I can happily listen to sound that comes from the TV for example, but the radio results in this horrible reaction. This persists to this day. I have no idea what's going on or causing it, and neither do any doctors who either presume it's all psychological or just don't know. However I'm 100% certain its not a psychological issue. It just feels like an extreme and wrong overreaction to certain stimulation. And the fact that it can just change like a click of the fingers is very odd too.
- I'm losing the hair all over my body - I know that's not that odd, and goes with other illnesses, but I can't seem to get doctors to take it seriously. All the hair on my head, legs, pubic and underarms is falling out. And until I became ill none of that had ever happened. It's clearly not normal yet I get brushed off whenever I mention it to docs.
- I can't go outside - physically I can but if I do I get really ill a few days afterwards. I don't know what it is, possibly sunlight, but if I was to sit out in my garden for an hour then a few days later I would be really ill. So for the last 8 years I've been virtually housebound. I tried using a SAD UV lamp for a couple of days as well, and that made me really ill afterwards.
- I'm worse in the winter and better in the summer - this is unrelated to vitamin D as I don't go outside any more in the summer than the winter, nor is it seasonal affective disorder as I don't get any depression, but I always feel much worse from October through to March. This was even reflected in blood tests as for the first 5 years of being ill my ESR, CRP and Neutrophils would begin to rise in October, peak in January/February and then begin to decrease in March before returning to normal throughout the summer. The next year they would follow the same pattern, and so on. So it feels like my body is responding or reacting to the seasons or weather changes.
- Whenever I'm worse or have done something to make myself worse (exercise, been stressed, gone outside etc) a few days after the event I will wake during the middle of the night or very early morning sweating, shaking, heart racing and pounding, neck very tight and having to rush to the toilet, sometimes with diahorrea. This always happens during the middle of the night for some reason, and is always a reaction to something I've done that my body clearly doesn't like.
- I cannot gain weight - its as if my body is locked at a set weight and refuses to put any on no matter how much I eat. I'm currently underweight and have been since I was young (around 7or 8 years old) as whatever is wrong with me has been there since that early age and quite likely birth. In fact my weight was picked up by my GP when I was 7 and he was supposed to monitor it but that was never followed up on. I'm now 28, 5 ft 10 and weigh 120lbs. 5 years ago when I was much more ill I weighed under 100lbs and doctors feared for my life as I was so underweight. Thankfully it improved and I've slowly managed to gain some but I'm still too low and considering I sit around all day doing very little activity and eat more than enough I can't gain a pound. I've even tried adding in meal supplements between meals to try and help but still it makes no difference. I'm absorbing food perfectly as all my vitamin, mineral and iron levels are fine but the weight will not go on. Just to be clear this isn't any sort of eating disorder. I've always eaten well and more than enough my entire life but it has never made any difference. I assume something is speeding my metabolism up but don't know for sure.
- I have an increased libido - this is bizarre considering how ill I feel and that most chronic illnesses seem to do the exact opposite but I genuinely have a noticeably increased sex drive.
- I feel like I'm overstimulated all the time. I can't sit still even though I feel so weak and ill, my mind races constantly, I talk and move too quickly even though I'm very weak and my reflexes are extremely fast. It just never feels like my body is never able to settle.
The majority of tests I've had done have come back normal, and I've had many! The abnormal ones were the seasonally fluctuating ESR, CRP and Neutrophils I mentioned earlier, a low FSH, raised Cortisol, and one time my liver enzymes were very high but they corrected themselves. But that's about it. Tilt table test ruled out POTS but I do get an increase in heart rate when I stand. Lots of autoimmune disorders ruled out, MRIs and ultrasounds showing nothing, and yet I'm so incapacitated I can't leave my house and can do little more than sit around and watch TV all day being looked after totally by my ageing parents.
Oh, and I don't get and have never had any pain, headaches, sore throats, depression or brain fog. In fact I'm pretty sure my memory seems better since I've been ill!
My sister has recently been diagnosed with a thyroid problem. She has a large goitre, nodule and thyroid antibodies. My dad also has thyroid nodules. I thought with the close family connection that might mean something but again, doctors don't seem bothered. No doubt because all my thyroid blood tests are normal.
Is it possible I have CFS/M.E.? I'm convinced I've been ill since I was very young, quite possibly birth, and it showed up in small incidences sporadically until I became very sick at 20 - could CFS work like that? Can you be born with it? Could it be keeping my weight so low? And have done so since I was a child? Does it cause all over hair loss? And just generally do my symptoms sound like it or something else entirely?
If anyone has any ideas or thoughts on some of these symptoms and there possible causes I would massively appreciate it.
Thanks! (Apologies for the length of this post!)