Hi there,
6 years ago I came down with a mystery illness. So far no doctors had been able to get anywhere with a diagnosis, and I was just wondering whether if I posted a fairly detailed history of my case, symptoms and test results would you be able to offer any ideas about what it could be, or whether ME/CFS is the answer?
The illness began in November and completely out of the blue. I woke up feeling totally normal and then at just after midday I started to feel very weak and fatigued. This continued for about 30 minutes at which point I wondered if it was being caused by low blood sugar or lack of energy from having not eaten for a while, so I promptly tried eating food (even though I had zero appetite) and it made me much, much worse. I started to feel sick, shaking, sweating and heart thumping and also apparently became very pale – as was told by a friend. This continued throughout the afternoon until 5pm when I started to feel much better. In fact so much so that I believed I was over whatever it was and ate a full meal and went to bed assuming I’d be fine the next day. However, after waking and feeling ok during the morning, again at 12pm the exact same thing happened – fatigued throughout the afternoon. Come 5pm, I improved and felt much better during the evening. Every single day for the last 6 years this exact same pattern has happened – 12pm become extremely fatigued and ill feeling, 5pm I improve and feel better. Unfortunately, this was only the beginning.
After this continued for about 10 days I went to a doctor who performed some routine blood tests that whilst didn’t show any specific illness, did show an increase in ESR, CRP, white cell count (neutrophils) and platelets.
These levels continued to rise throughout December, January and February, but then in April had begun to come down. By August they were all completely normal, and although I felt a little bit better, the illness remained.
Not only does the illness follow a daily pattern that I mentioned above, 12pm worse until 5pm, but there is a bizarre but obvious 6 monthly pattern – my blood tests are all increased during the winter months (October to March) and then from April they begin to improve until August when everything is normal again, and then come October they all start to rise again and the pattern repeats itself. This has happened every single year for 6 years now without fail. During the winter I feel worse too, as reflected by the blood tests, but come the summer when they all become normal I only feel a mild improvement in myself.
Recently, instead of my CRP, ESR, platelets, neutrophils etc. being raised as I said above, they all became normal during the winter and instead my ALT (alanine aminotransferase) became very high (313 and top of the range is 50), stayed this way throughout winter and has since become normal again as I’ve come into the summer months. I had my liver scanned and a hepatitis screen to check for liver problems but all was fine. I’ve since looked ALT up and found that it can be caused by inflammation to the liver, and the increased ESR, CRP, platelets etc. points to inflammation too, although only during the winter months for some reason.
Other symptoms I have:
Strongly beating heart – At first this was only present between midday and 5pm, but it has now become constant at all times. Whether I’m lying, sitting or standing my heart beats far too strongly all the time and I feel a constant pounding in my chest. Not necessarily too fast, just thumping away in my chest. When I stand my pulse rate increases too. This was shown as postural tachycardia by a tilt table test.
Hair loss – from body and head. Hair on my head is very thin now, and is still constantly falling out. Also lost hair from my thigh calf.
Constantly low temperature - low on waking (average about 36.0 C/ 96.8 F) and rises slightly throughout the day peaking at about 9pm at 36.4 C/ 97.5 F). Also if I stand, walk about or do any exercise my temperature drops.
Fatigue – the fatigue doesn’t make me feel sleepy, and I never sleep during the day, just weak and ill. It’s hard to describe exactly, but since this all started I haven’t felt right once.
Loss of appetite – Since becoming ill I haven’t felt hungry at all. It’s like my sense of hunger has been switched off.
Digestion – bloating, gas and wind. Along with a loss of appetite I seem to have lost feeling in my stomach, as if it is not sending me messages of when I’m hungry. I could go hours and hours and never feel hungry.
Weight – Has always been very low, and no matter how much I eat I can’t get over 8 and a half stone/125lbs. I'm 5ft 10" and 26 years old.
Skin – I have severe seborrheic dermatitis on my face, scalp and torso.
Nervous system – It feels like my entire nervous system is very oversensitive, but not in the normal way people talk about. When I look at a TV, computer or phone screen I get what feels like an adrenaline release. I will sweat, shake, my heart rate increases and I have to open my bowels. This happens almost instantly. I don’t find the computer or TV a strain on my eyes or struggle with the glare. In fact the only problem I have is this ridiculous body reaction. I also get the same reaction of an what feels like an adrenaline release when I need to open my bowels – instead of the normal message everyone gets that tells them they have to go to the toilet my body instead does the shaking, sweating and heart rate increase which will persist until I open my bowels and it then stops almost instantly.
Also to do with my digestion is that when I drink fluid my body often reacts by shaking and sweating. My digestion is so poor that I cannot drink during the day as it fills me up and would not allow me to eat anymore food, and with such a low weight I am concerned about it dropping even further. So I finish my evening meal and then have fluid. However when I do drink my body reacts by making me sweat and shake – again what feels like adrenaline. This happens with cold drinks, so is not to do with the warmth from hot drinks. This coupled with my extremely poor digestion has meant that I find it very difficult to consume the required amount of fluid per day, and sweating and shaking every time you consume fluid is incredibly debilitating. I realise these could all sound psychological but can assure you they are definitely not. They are physical reactions that I have absolutely no control over.
Other problems with the nervous system are that any minor stress or tension results in a massive over reacting. I find it difficult to watch something like a sporting event or a tense thriller as even the slightly tension causes my body to over react and I will again sweat, shake, and have the heart rate increase - like a panic attack, but not.
It’s really difficult to describe all these problems accurately as most people seem to always get the wrong end of the stick, like I can’t look at a TV screen because it’s too bright and my eyes are sensitive to the light, but that’s not the case at all. All that happens is my has what feels like a huge adrenaline release - body sweats, shakes, heart rate increases etc.
Reaction after stress – If something does cause me to be stressed or nervous, as mentioned above, then the next day or a couple of days later I feel much worse. More fatigued, digestion worse, more sensitive nervous system. Also my temperature can increase and has on a few occasions after a big stress caused me to have a raised above normal temp or even fever. It seems that after something stressful then whatever the inflammation is that’s lurking in my body and causing my increased blood tests is able to have more of an affect, thus causing the problems I mentioned above.
The sun – I am unable to go in the sun as if I do my body also reacts by causing me to feel much worse the next day and then thereafter and also causes me to have an increased temperature or fevers. This to me seems like my body is viewing sunlight as a stress to it (merely guesswork though). I've only been able to go in the sun 3 or 4 times over the last 6 years and each time I've felt much worse after and had quite severe fevers a few days later too.
Sweating – whilst so many things cause me to sweat, I only do so from my back, armpits and legs. My face, head, neck, chest, stomach, arms and hands do not sweat at all, ever.
Sleep – I cannot get to sleep unless I eat something. I am wide awake and then I eat something small and I fall asleep within a few minutes. I often wake during the night and have to eat something small to get back to sleep again.
Racing thoughts – my brain seems to be over stimulated all of the time. I also often get racing thoughts when I eat.
Reflexes – very quick reflexes.
Greasy hair – within hours of washing it my hair becomes very greasy.
One last thing I have not mentioned is that along with following the seasonal-like pattern of improving blood tests during the summer months, some symptoms I have improve during these summer months and then can go altogether, but as the blood tests begin to rise again around October new symptoms will then emerge. So symptoms can come and go following this pattern every year and large parts of illness seems to be continually changing.
I DO NOT suffer from:
Brain fog or memory problems – my mind feels as sharp as it has ever done.
Dizziness/light headedness/fainting
Chest pains.
Headaches.
Visual disturbances.
Pain – I have no joint or muscle pain whatsoever.
Vomiting.
Immune system – been ill with regular viruses, none more so than usual though, and the immune system hasn’t struggled.
Depression – haven’t been depressed at all, just frustrated.
Doctors have performed quite a few tests on me:
TSH – in first few weeks of illness it was 2.2, now 6 years later it is 1.4.
T3 – 4.8 PMOL/L – normal.
T4 – 19.4 PMOL/L – normal.
Parathyroid – 2.8 PMOL/L – normal.
Cortisol – 901 NMOL/L – high.
Echo cardiogram, ECG and 24 hour heart rate monitor – normal but cardiologist noted my strongly beating heart and an erratic heart.
Ultrasound of stomach – normal.
Ultrasound of liver – normal.
ACTH Stimulation (Synacthen) test – normal.
MRI of head and lumbar - normal.
Urine metadrenalines – normal.
Anti-nuclear antibodies – negative.
Smooth muscle antibodies – negative.
Mitochondrial antibodies – negative.
Gast PL Cell antibodies – negative.
Liver Kidney microsomal antibodies – negative.
Endomysial antibodies – negative.
DNA binding antibodies – negative.
Rheumatoid Factor – normal.
Borrelia (Lyme disease) antibodies – negative.
Infectious Mononucleosis – negative.
Coxsacki B Virus – negative.
Toxoplasama antibodies – negative.
IgG – normal.
IgA – normal.
IgM – normal.
Chromongranin A & B – normal.
Compliment C3 – 1.38 g/l – normal.
Compliment C4 – 0.28 g/l – normal.
Glucose fasting test – normal.
Insulin-like Growth factor 1 & 2 – normal.
ESR – 60 mm/hr - high.
C-Reactive Protein – 77 mg/l - high.
Neutrophils – 12.4 x10^9/L - high.
Platelets – 460 x10^9/L - high.
MCV – 73.0 fL - low.
MCH – 22.9 pg - low.
MCHC – 29.6 g/dl - low.
Serum iron – 4.4 UG/L- low.
Iron Saturation – 11% - low.
Haemoglobin – 11.8 G/DL - slightly low.
One last thing – I’ve noticed as I’ve become more aware and familiar with my symptoms that looking back over most of my life, there have been small events that lead me to believe that whatever this illness is it has been sort of within me or lying dormant for most of, if not all my life. Looking back from the age of 8 I can think of about 10 separate occasions where I became ill for a brief period that had exactly the same symptoms as I now have all the time. Also the fact that throughout my entire life I have been such a low weight (up to 20 years old I weighed no more than 8 stone/120lbs) and found it impossible to put any on. I personally now believe that whatever is the matter with me has been there for over 10 years and I could well believe it is something I was born with.
I can only apologise for the length of this and the amount of information included (and if any doesn’t make sense), it’s just that I’ve been ill for coming up to 6 years now and I'm still no closer to figuring out what's wrong with me. All the doctors I have seen are either uninterested or seem to have absolutely no idea and are not willing to really try anything, so I’m left to myself to try and figure it out. In 6 years there hasn't been a single suggestion or attempt to treat even part of what's going on. Some have said it's CFS, some have said it definitely isn't. I'm at a loss, but unfortunately so are they it seems.
If anyone has any ideas or thoughts on any of this I would greatly appreciate them. It may seem like nothing but even the most random thought might give me something to go on or somewhere to start.
Thanks for reading!
Andy
P.S. I wasn't sure what part of the forums to post this so apologies if it's the wrong place!
6 years ago I came down with a mystery illness. So far no doctors had been able to get anywhere with a diagnosis, and I was just wondering whether if I posted a fairly detailed history of my case, symptoms and test results would you be able to offer any ideas about what it could be, or whether ME/CFS is the answer?
The illness began in November and completely out of the blue. I woke up feeling totally normal and then at just after midday I started to feel very weak and fatigued. This continued for about 30 minutes at which point I wondered if it was being caused by low blood sugar or lack of energy from having not eaten for a while, so I promptly tried eating food (even though I had zero appetite) and it made me much, much worse. I started to feel sick, shaking, sweating and heart thumping and also apparently became very pale – as was told by a friend. This continued throughout the afternoon until 5pm when I started to feel much better. In fact so much so that I believed I was over whatever it was and ate a full meal and went to bed assuming I’d be fine the next day. However, after waking and feeling ok during the morning, again at 12pm the exact same thing happened – fatigued throughout the afternoon. Come 5pm, I improved and felt much better during the evening. Every single day for the last 6 years this exact same pattern has happened – 12pm become extremely fatigued and ill feeling, 5pm I improve and feel better. Unfortunately, this was only the beginning.
After this continued for about 10 days I went to a doctor who performed some routine blood tests that whilst didn’t show any specific illness, did show an increase in ESR, CRP, white cell count (neutrophils) and platelets.
These levels continued to rise throughout December, January and February, but then in April had begun to come down. By August they were all completely normal, and although I felt a little bit better, the illness remained.
Not only does the illness follow a daily pattern that I mentioned above, 12pm worse until 5pm, but there is a bizarre but obvious 6 monthly pattern – my blood tests are all increased during the winter months (October to March) and then from April they begin to improve until August when everything is normal again, and then come October they all start to rise again and the pattern repeats itself. This has happened every single year for 6 years now without fail. During the winter I feel worse too, as reflected by the blood tests, but come the summer when they all become normal I only feel a mild improvement in myself.
Recently, instead of my CRP, ESR, platelets, neutrophils etc. being raised as I said above, they all became normal during the winter and instead my ALT (alanine aminotransferase) became very high (313 and top of the range is 50), stayed this way throughout winter and has since become normal again as I’ve come into the summer months. I had my liver scanned and a hepatitis screen to check for liver problems but all was fine. I’ve since looked ALT up and found that it can be caused by inflammation to the liver, and the increased ESR, CRP, platelets etc. points to inflammation too, although only during the winter months for some reason.
Other symptoms I have:
Strongly beating heart – At first this was only present between midday and 5pm, but it has now become constant at all times. Whether I’m lying, sitting or standing my heart beats far too strongly all the time and I feel a constant pounding in my chest. Not necessarily too fast, just thumping away in my chest. When I stand my pulse rate increases too. This was shown as postural tachycardia by a tilt table test.
Hair loss – from body and head. Hair on my head is very thin now, and is still constantly falling out. Also lost hair from my thigh calf.
Constantly low temperature - low on waking (average about 36.0 C/ 96.8 F) and rises slightly throughout the day peaking at about 9pm at 36.4 C/ 97.5 F). Also if I stand, walk about or do any exercise my temperature drops.
Fatigue – the fatigue doesn’t make me feel sleepy, and I never sleep during the day, just weak and ill. It’s hard to describe exactly, but since this all started I haven’t felt right once.
Loss of appetite – Since becoming ill I haven’t felt hungry at all. It’s like my sense of hunger has been switched off.
Digestion – bloating, gas and wind. Along with a loss of appetite I seem to have lost feeling in my stomach, as if it is not sending me messages of when I’m hungry. I could go hours and hours and never feel hungry.
Weight – Has always been very low, and no matter how much I eat I can’t get over 8 and a half stone/125lbs. I'm 5ft 10" and 26 years old.
Skin – I have severe seborrheic dermatitis on my face, scalp and torso.
Nervous system – It feels like my entire nervous system is very oversensitive, but not in the normal way people talk about. When I look at a TV, computer or phone screen I get what feels like an adrenaline release. I will sweat, shake, my heart rate increases and I have to open my bowels. This happens almost instantly. I don’t find the computer or TV a strain on my eyes or struggle with the glare. In fact the only problem I have is this ridiculous body reaction. I also get the same reaction of an what feels like an adrenaline release when I need to open my bowels – instead of the normal message everyone gets that tells them they have to go to the toilet my body instead does the shaking, sweating and heart rate increase which will persist until I open my bowels and it then stops almost instantly.
Also to do with my digestion is that when I drink fluid my body often reacts by shaking and sweating. My digestion is so poor that I cannot drink during the day as it fills me up and would not allow me to eat anymore food, and with such a low weight I am concerned about it dropping even further. So I finish my evening meal and then have fluid. However when I do drink my body reacts by making me sweat and shake – again what feels like adrenaline. This happens with cold drinks, so is not to do with the warmth from hot drinks. This coupled with my extremely poor digestion has meant that I find it very difficult to consume the required amount of fluid per day, and sweating and shaking every time you consume fluid is incredibly debilitating. I realise these could all sound psychological but can assure you they are definitely not. They are physical reactions that I have absolutely no control over.
Other problems with the nervous system are that any minor stress or tension results in a massive over reacting. I find it difficult to watch something like a sporting event or a tense thriller as even the slightly tension causes my body to over react and I will again sweat, shake, and have the heart rate increase - like a panic attack, but not.
It’s really difficult to describe all these problems accurately as most people seem to always get the wrong end of the stick, like I can’t look at a TV screen because it’s too bright and my eyes are sensitive to the light, but that’s not the case at all. All that happens is my has what feels like a huge adrenaline release - body sweats, shakes, heart rate increases etc.
Reaction after stress – If something does cause me to be stressed or nervous, as mentioned above, then the next day or a couple of days later I feel much worse. More fatigued, digestion worse, more sensitive nervous system. Also my temperature can increase and has on a few occasions after a big stress caused me to have a raised above normal temp or even fever. It seems that after something stressful then whatever the inflammation is that’s lurking in my body and causing my increased blood tests is able to have more of an affect, thus causing the problems I mentioned above.
The sun – I am unable to go in the sun as if I do my body also reacts by causing me to feel much worse the next day and then thereafter and also causes me to have an increased temperature or fevers. This to me seems like my body is viewing sunlight as a stress to it (merely guesswork though). I've only been able to go in the sun 3 or 4 times over the last 6 years and each time I've felt much worse after and had quite severe fevers a few days later too.
Sweating – whilst so many things cause me to sweat, I only do so from my back, armpits and legs. My face, head, neck, chest, stomach, arms and hands do not sweat at all, ever.
Sleep – I cannot get to sleep unless I eat something. I am wide awake and then I eat something small and I fall asleep within a few minutes. I often wake during the night and have to eat something small to get back to sleep again.
Racing thoughts – my brain seems to be over stimulated all of the time. I also often get racing thoughts when I eat.
Reflexes – very quick reflexes.
Greasy hair – within hours of washing it my hair becomes very greasy.
One last thing I have not mentioned is that along with following the seasonal-like pattern of improving blood tests during the summer months, some symptoms I have improve during these summer months and then can go altogether, but as the blood tests begin to rise again around October new symptoms will then emerge. So symptoms can come and go following this pattern every year and large parts of illness seems to be continually changing.
I DO NOT suffer from:
Brain fog or memory problems – my mind feels as sharp as it has ever done.
Dizziness/light headedness/fainting
Chest pains.
Headaches.
Visual disturbances.
Pain – I have no joint or muscle pain whatsoever.
Vomiting.
Immune system – been ill with regular viruses, none more so than usual though, and the immune system hasn’t struggled.
Depression – haven’t been depressed at all, just frustrated.
Doctors have performed quite a few tests on me:
TSH – in first few weeks of illness it was 2.2, now 6 years later it is 1.4.
T3 – 4.8 PMOL/L – normal.
T4 – 19.4 PMOL/L – normal.
Parathyroid – 2.8 PMOL/L – normal.
Cortisol – 901 NMOL/L – high.
Echo cardiogram, ECG and 24 hour heart rate monitor – normal but cardiologist noted my strongly beating heart and an erratic heart.
Ultrasound of stomach – normal.
Ultrasound of liver – normal.
ACTH Stimulation (Synacthen) test – normal.
MRI of head and lumbar - normal.
Urine metadrenalines – normal.
Anti-nuclear antibodies – negative.
Smooth muscle antibodies – negative.
Mitochondrial antibodies – negative.
Gast PL Cell antibodies – negative.
Liver Kidney microsomal antibodies – negative.
Endomysial antibodies – negative.
DNA binding antibodies – negative.
Rheumatoid Factor – normal.
Borrelia (Lyme disease) antibodies – negative.
Infectious Mononucleosis – negative.
Coxsacki B Virus – negative.
Toxoplasama antibodies – negative.
IgG – normal.
IgA – normal.
IgM – normal.
Chromongranin A & B – normal.
Compliment C3 – 1.38 g/l – normal.
Compliment C4 – 0.28 g/l – normal.
Glucose fasting test – normal.
Insulin-like Growth factor 1 & 2 – normal.
ESR – 60 mm/hr - high.
C-Reactive Protein – 77 mg/l - high.
Neutrophils – 12.4 x10^9/L - high.
Platelets – 460 x10^9/L - high.
MCV – 73.0 fL - low.
MCH – 22.9 pg - low.
MCHC – 29.6 g/dl - low.
Serum iron – 4.4 UG/L- low.
Iron Saturation – 11% - low.
Haemoglobin – 11.8 G/DL - slightly low.
One last thing – I’ve noticed as I’ve become more aware and familiar with my symptoms that looking back over most of my life, there have been small events that lead me to believe that whatever this illness is it has been sort of within me or lying dormant for most of, if not all my life. Looking back from the age of 8 I can think of about 10 separate occasions where I became ill for a brief period that had exactly the same symptoms as I now have all the time. Also the fact that throughout my entire life I have been such a low weight (up to 20 years old I weighed no more than 8 stone/120lbs) and found it impossible to put any on. I personally now believe that whatever is the matter with me has been there for over 10 years and I could well believe it is something I was born with.
I can only apologise for the length of this and the amount of information included (and if any doesn’t make sense), it’s just that I’ve been ill for coming up to 6 years now and I'm still no closer to figuring out what's wrong with me. All the doctors I have seen are either uninterested or seem to have absolutely no idea and are not willing to really try anything, so I’m left to myself to try and figure it out. In 6 years there hasn't been a single suggestion or attempt to treat even part of what's going on. Some have said it's CFS, some have said it definitely isn't. I'm at a loss, but unfortunately so are they it seems.
If anyone has any ideas or thoughts on any of this I would greatly appreciate them. It may seem like nothing but even the most random thought might give me something to go on or somewhere to start.
Thanks for reading!
Andy
P.S. I wasn't sure what part of the forums to post this so apologies if it's the wrong place!
