International ME/CFS and FM Awareness Day Is On May 12, 2018
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Odd Symptoms

Discussion in 'General Symptoms' started by omron, Apr 7, 2016.

  1. omron


    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.


    • 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.
    I have many other symptoms (weakness, low temp, low blood pressure etc.) but they are generally less strange. I picked the odd ones out in the hope they might be more recognisable to someone and point specifically to an illness or at least an area of medicine (although I've always been convinced it's an endocrine problem).

    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!)
    Old Bones and ScottTriGuy like this.
  2. Maria1

    Maria1 Silence speaks volumes

    Hi there

    That all sounds horrendous. I'm no expert but everything you mentioned made me think there's something going on with your thyroid, or some hormonal problem that could be affecting thyroid too.

    There are some thyroid specialists who treat on symptoms and believe that you can have thyroid disease despite blood tests showing as 'normal'. My endocrinologist is one of these specialists. I'm in the UK and have Hashimotos, diagnosed with ME/CFS too. I have antibodies but I know my endocrinologist treats on symptoms rather than just blood tests.

    From my experience of reading about thyroid conditions I can't help wondering if it's worth exploring more in that area, given your symptoms and your family history.

    Hope you get some answers.
  3. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Yes it's possible you have ME CFS (the diagnosis is self reported symptoms by the patient) but be mindful that to be 'sure' you have disease associated CFS ME it's hard to know 100% as there is no quick diagnostic test and in addition few exploratory tests are done at time of diagnosis other than exclusionary tests (ME CFS is a diagnosis of exclusion) to rule out the basics like Cancer, Thyroid, Diabetes. I say this, as doctors don't follow an exact list of 'rule out ABC', and so some are more thorough than others. Do keep that in mind, when concluding (by being told) ''you have CFS''. Make sure no stone is left unturned before accepting that diagnosis.

    I will now try and answer some of your questions from a patient perspective. I am not a doctor, but know more than doctors about my disease like most other patients. This isn't hard as no doctors are not trained in ME CFS, keep this is mind when doctors dismiss you or shrug their shoulders when lost for avenues of testing. They aren't usually spiteful, they are just ignorant on a medical level because they have no knowledge (due to no training). Mix this with well established disbelieving attitude and this is a recipe for disaster when you're a patient, seen as a ''heart sink'' patient in fact, i.e when the doctor sees an ME CFS patient, they know you're going to be impossible to fix.


    1) You can have a thyroid goitre without thyroid disease as inflammation can enlarge it. To demonstrate this have an ultrasound and see if a goitre shows up on the imaging.

    2) Hair loss can be caused by a myriad of things that you likely won't have been tested for, such as nutritional deficiencies and a condition called adult growth hormone deficiency which requires a specialist test to stress the pituitary gland, the first test is easy though IGF-1 level, although be aware a person can have severe adult growth hormone deficiency with normal levels of IGF-1.

    3)Low temp without thyroid disease is a common feature of ME CFS. It may be caused in some by blown thyroid receptors in the brain that don't react to the hormone levels in the blood (thus blood testing is pointless), it may also be due to mitochondrial dysfunction in which you are running a low core temperature due to having a metabolic disorder, lower core temperatures are favourable to infection also. Personally I would look into nutrition as you need to have correct levels of nutrition and factors such as iodine, for your thyroid to work efficiently.

    One quick explanation is if the screen technology changed in that time period from low refresh rate CRT tube monitor to an LCD screen with higher refresh rate. I couldn't use a PC without seizures until 'modern' computers arrived.

    In addition partial seizures can come and go, it's theoretically possible to not have one for 5 years, and thus the phenomena you described stopped out of nowhere.

    It could also be something else in your body changed. Your brain, feeds off your body and what is put in your body.

    Lastly, people with ME CFS do report their cluster of symptoms can change, and some do indeed vanish over time. This is also found in Autoimmune disease, such as MS.

    Sunlight has information going into your brain. People with chronic balance disorders, tend to get worse in bright lights.

    Sunlight usually involves heat. Heat dilates blood vessels, this will make ME CFS or POTS much worse (as will having a bath) especially if you suffer from low blood pressure! Heat also is a problem for MS sufferers. Many PWME CFS report getting worse sitting in the sun or sunbathing, it possibly is something to do with VItamin D and it's utilisation, e.g an unknown immune/hormonal response. Have you checked your Vitamin D levels? (cheap test). Many PWME CFS have super low levels, worse in northern europe of course as they have little sun compared to the USA.

    Lastly, you can even be 'alergic' to sunshine, some people come up in a rash. This is also found in some patients who take certain class of antibiotics. Sun sickness. It's not imagined.

    This doesn't rule out ME CFS, and sounds familiar to what many patients experience. Remember in ME CFS diagnosis, all standard tests you mention should be normal.(It's diagnosed, using non inclusion based tests).

    Raised cortisol is not common in ME CFS but can be falsely elevated on a blood test due to stress or anxiety. The same goes for Prolactin.

    Try and get one taken at home and compare, this won't make any difference though if you're scared of blood tests or feel stressed during the procedure. I can chat quite happily an sit upright when having 10+ blood tests taken at once as I've trained myself to do this, at first I used to come over all faint and have to lie flat covered in sweat - adrenal response to fear/threat/pain. [/quote]

    As mentioned in part of my post, test your Growth Hormone and Adrenals, such as ACTH (not just cortisol). You don't have to have Addison's disease and have gross adrenal failure, you could have subtle secondary hypocortisol state because your brain (not adrenals) doesn't work correctly. Endocrinologists are famed for missing this.

    Also if you have low blood pressure you may have low blood volume - we know you don't have POTS as you said. Test ADH (Anti diuretic hormone), Test Aldosterone. Test 24hr urine Sodium. For a more accurate display of blood pressure overtime, have a 24hr blood pressure monitor fitted (it'll stop you from sleeping, but it's worth it).

    Cognitive dysfunction and associated short term memory problems is a key sign of ME although not required by many who diagnose CFS or CFS/ME . Depression is only found in some patients, not at all.

    New onset headache of type/pattern/severity is also a core feature of ME. People will differ in how they are affected by this of course, including photophobia and hyperacusis.

    Currently ME CFS is an acquired disease in which people report they were healthy, however, future research may show a subset of ME CFS is related to an infection you are born with and passed on by the mother/blood transfusion/STD, such as Borrelia infection that causes Lyme. If proven, that would be years away, it doesn't mean that the answer is Yes or No though, it's just not known, because we don't know what ME is yet and we don't know how many conditions exist within CFS either.

    I should add there are two accepted forms of ME CFS, although rarely discussed by government doctors:

    Slow Onset an Sudden Onset. The Slow Onset patients, tend to worse, and many like yourself report symptoms at a very young age years before getting sick enough to be diagnosed with ME CFS. E.g they got mild symptoms (not fatigue related) at age 5 or 10, but didn't get diagnosed until adolescence 12/13 in girls and usually around 15/16/17 in boys. Arguably, sexual maturity activates something in subsets of ME CFS, or, is related to vaccines given at this age, such as BCG for TB. Naturally government doctors and scientists would deny this, but government doctors didn't have their disease activated (triggered) by vaccines, so should remain quiet as their lives haven't been destroyed since childhood like ours have.

    Yes, because we don't yet know what 'it' is or what subset each patient has. Weight loss indeed appears in some patients, usually in the initial stage of the disease significant weight loss can occur (50 lbs or so). This was also my experience and others on here. Usually nothing is found, that doesn't mean nothing is there. I myself was accused of having an eating disorder when I felt permanently starving and lived of chocolate bars and coca cola. This implies some form of hyper metabolic state, as in later years I grew very overweight. Endocrine disorders can make people lose weight as can 'wasting' states in various immune diseases and infections.

    ME CFS sufferers and other conditions that affect your CFS often report they feel 'wired'. This may be brain waves becoming abnormal.

    Have you had a QEEG? I found this useful for catching spikes of seizures in myself and showing delta waves (Sleep waves) when I am awake!

    If you didn't know seizure activity can do lots of horrible things to you and you don't need to pass out and have convulsions. They can make you get vertigo, hallucinate, smell things that aren't there etc.

    This would be impossible to answer until ME CFS (if you have that) is researched for another 30 years. E.g. in some neurological disorders, strange things can occur, such as in Parkinson's disease.

    A psychologist would also argue, some with unfortunate lives 'adapt' by engaging in pleasure seeking activity in order to have gratification in order to not feel depressed and have less stress. If this keeps you happy, it's perfectly normal for a young person, especially male, to have a high sex drive. That's what testosterone does to people, it affects our behaviour in order to make babies, to keep the human race going. I wouldn't worry about it, unless it affects your life or others adversely.

    Panic attacks do this, as does low blood sugar attacks which many PWME CFS suffer from who don't have diabetes or adrenal failure.

    If possible buy a blood glucose testing kit and either yourself test, or get someone with clean hands to prick your finger and drop the sample on the testing device to see if its normal or not.

    Very rarely you can get a condition called pheochromocytoma that can dump adrenaline in your body, which can present as panic atacks, vomitting, chest pain, tachycardia, shaking and lose bowel movements (caused by the hormones). This is very rare though, but can be tested for with a 24hr Urine test.

    Possibly explained as this time of year there are more infections, and you're relapsing from repeat infection or a chronic infection.
    Old Bones and merylg like this.
  4. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    From my mamouth post above, I forgot to add if you feel 'nervous' a lot of the time other than what I discussed, you can test your Sympathetic and Parasympathetc nervous system in a basic manner, using a non invasive test (ECG +PC).

    It's called a Heart Rate Variability test. A basic DIY version even exits on modern smart phones (pulse sensor on back of phone) , such as from Samsung app, called Samsung Health I think.

    In myself, I don't have any Parasympathetic nerve function left, this phenomena is also found in Autism.
  5. Old Bones

    Old Bones Senior Member

    @omron You've received some good suggestions in the posts above. All I can add is that as a long-term ME patient, I don't consider many of your symptoms strange, but rather normal -- at least for me. I, too, become much worse if outside -- either in the sun; or in a vehicle, even if it is cloudy outside. It seems the light coming through the vehicle glass is intensified. I also reacted badly to using a SAD light in an attempt to resolve sleep issues. It was overstimulating (much like your computer experience), so my sleep actually worsened. And, my skin felt like it had been burnt by acid.

    I'm also always worse in the winter, better in summer, as long as I avoid the types of light described above. I have wondered about my histamine sensitivity as the reason behind the light sensitivity.

    And I know I've overdone things when in the middle of the night, I wake up sweating, trembling, heart pounding, and with the sensation that every muscle fibre in my body is tense.

    @Research 1st I find this comment very interesting. I've always considered my first experience with ME to have occurred at age 12, after which I seemingly made a full recovery. But now, I recall being hospitalized at age 5. I was unable to walk, and awoke screaming at night from the pain. My symptoms were attributed to over-using my muscles while learning how to skip rope. Of course, none of my little friends experienced the same problem. With rest, I gradually recovered and went on to live a normal, healthy life until age 12 as previously mentioned. My final ongoing experience with ME started at age 32.
  6. wastwater

    wastwater Senior Member

    I find CRT and plasma screens to have a stunning effect and can detect the flicker.
  7. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    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.

    that 's very common in me/cfs, your other symptoms are stranger. sometimes computer screens can make some worse as they are to bright but u didn't mention that was case. maybe post a full list of your symptoms rather then only the strange ones
  8. Hip

    Hip Senior Member

    Sounds like you might be reacting to the vitamin D produced by sunlight / UV lamps.

    Have you ever considered a diagnosis of sarcoidosis? Sarcoidosis patients are abnormally sensitive to vitamin D, which can cause symptom flair ups. In sarcoidosis you can also lose body hair.

    You might want to look into the Trevor Marshall story: he developed his sarcoidosis treatment (called the Marshall Protocol) after noticing his sarcoidosis got worse after exposure to sunlight.

    Symptoms of sarcoidosis are here. There is also neurosarcoidosis.
    Last edited: Apr 7, 2016
  9. omron


    Thanks for all the replies! I'll try to answer each separately:

    I'm in the UK too and still believe with my family history it would be silly to ignore it completely. Is there any chance you could PM me your doctors name? It might be worth me seeing them in case.

    Thanks for the kind words too!

    I'm actually having my thyroid scanned in the next month so I'll see if anything shows up there.

    I've had my IGF-1 tested and that came back normal. What sort of nutritional deficiencies would cause hair loss from all over the body?

    Actually I found I responded better to the older technology! For ages I made my family by CRT Tv's even when LCD/led became available. But when it changed and I was fine with TVs again I could look at any of the tech. We now have an LCD and I watch it constantly.

    Also, any ideas about the radio? The fact that I feel like I'm having a panic attack or huge release of adrenaline when hearing specific, certain types of sounds feels utterly bizarre.

    I'm from the UK so sun is a premium! My vit D is low but considering I've barely been in the sun for 8 years I suppose it would be. It's tricky to know if it's that or whatevers wrong with me causing it.
    The other thing is that it doesn't seem to be solely light. I tested it and I feel just as ill if I go outside in total darkness as if I go in the light. It's as if going outside at all makes me really sick, which is quite disconcerting.

    No rashes, thankfully.

    I'm actually OK with blood tests. My record is 14 in one go! But I don't think I get too nervous. Like you, I can happily chat whilst it's taking place and I've never had to lie down or sweated profusely. So even if I was a bit nervous the raised Cortisol is significantly higher than it should be, and so I'd be surprised if it was just down to my own stress.

    I've been wanting the ACTH tested for years but no doc has done it. This confirms I'll just have to pay and get it done myself. Especially considering 3 separate endocrinologists have told me I have all the symptoms of adrenal insufficiency.

    I'll endeavour to get all those done as I havent yet. Oddly though my blood sodium levels is always right at the top of the range and very borderline high. Which is a little odd as I don't eat badly.

    Interesting. If you talked to me without seeing me as I look pretty terrible (hair loss, weight loss etc) you wouldn't know for a second i was ill. I'm completely lucid, on the ball and very sharp, and I've often thought this had worked against me as docs probably think because I sound so well I can't be as bad I claim. My mum even calls me "the most well sick person she's ever seen!"

    What's interesting about the symptoms I experienced at a younger age is that they were basically identical to what I suffer with now, and they were triggered by certain events. For example I had 3 separate incidents of mini versions of my current illness after going to theme parks. These were all years apart but on these 3 occasions I went on intense rollercoasters and soon after experienced identical feelings to now. It would last a few days and then I'd return to normal. It's one of the main reasons I've always suspected some sort of adrenal involvement as rollercoasters I'm fairly sure will result in adrenaline production or rushes.

    Never had a QEEG. I'll add it to my ever growing list!

    I haven't had my testosterone checked for a while but it was within range but towards the lower end when I did. Would you not expect a raised level to be more associated with an increased libido?
    The real issue I have with it as a symptom is the fact that if I relieve that sexual urge or frustration, I become much more ill. Whether the body finds the act of having an orgasm stressful and thus makes me worse I don't know, but I have to either live with this constant high libido or do something about it and accept I'm going to get much more ill as a result. Which isnt much fun.
    Also, since the libido has increased so has my 'lasting time'' shall we say. Basically I have severe premature ejaculation. For a while I could quite literally think myself to an orgasm, no physical stimulation was necessary. Now I require extremely little stimulation. I know that some illnesses can cause this but I've always thought it goes along with my overreacting nervous system, or the fact that my body feels like it's constantly stressed - I've read stress is s big cause of premature ejaculation.
    (Apologies if some of that was a bit 'too much information'!)

    My blood sugar has been checked and there's no problem there. I'm certain its not a panic attack though. I'm totally relaxed mentally its just my body going mental.

    I've had both metadrenalines and catecholamine tested and they were fine, so no pheochromocytoma.

    That's the weird thing about it, I don't find the screens too bright or harsh, or sounds too loud. It's all my body just weirdly reacting to the act of looking or hearing them.

    I'll post the rest of my symptoms up after this one.

    I think I have looked at sarcoidosis befire but will do so again, thanks!

    And thanks again to everyone who replied, I really appreciate it!
    Last edited: Apr 8, 2016
  10. Hip

    Hip Senior Member

    It's also worth looking at the Marshall Protocol itself. Prof Marshall believes that sarcoidosis is caused by L-form bacteria (bacteria which live inside human cells). His Marshall Protocol is designed to kill those intracellular bacteria, thereby treating sarcoidosis.

    The Marshall Protocol has also been used to treat ME/CFS.
    Art Vandelay likes this.
  11. Sea

    Sea Senior Member

    NSW Australia
    Blood sodium levels don't have anything to do with what you eat. If it is at the top of the range it is quite likely that you are borderline dehydrated/have low blood volume. This can happen in an illness which has diarrhoea and/or vomiting, low intake of fluid, an imbalance between Sodium and Potassium or, as in ME/CFS, some dysregulation of the system which controls how much blood volume you have. Patients who have low blood volume and are given saline infusions are often temporarily improved but the effect doesn't last. The body seems to have its set point that it returns to.

    A few more random thoughts:

    It would be good to list all your symptoms, not just the unusual ones, and all the tests you've had so far to make it easier for others to provide more helpful comments.

    Vitamin B12 deficiency is a big one that is often missed and can cause all kinds of weird neurological symptoms and all over hair loss. Serum results can be normal in some of these cases but there is some problem with the person being able to utilise what is obviously there. Other tests which give a clue to B12 being a problem are raised MCV, raised Homocysteine, raised Methylmalonic acid. Some doctors just give a trial of B12 injections even in the absence of positive tests.

    Screen weirdness is often a component of epilepsy.

    Autonomic dysregulation (OI, POTS, Dysautonomia and others) can result in the adrenaline dump, diarrhoea episodes you describe. These symptoms are often worse in people whose underlying pathology for the autonomic dysfunction is autoimmune. If thyroid autoimmune issues are a possibility then this would fit here.

    Seasonal change: is it possible that you are eating something different seasonally? Is there seasonal mould in your surroundings? Pollens? Allergies and food intolerances seem to go along for the ride with autoimmune illness. Sometimes they make a big difference to the overall picture, sometimes not.

    This sounds like classic Graves disease (hyperthyroid - maybe autoimmune) along with the fast metabolism and difficulty gaining weight even though some of your other symptoms are the opposite of symptoms listed for Graves and some you don't seem to have. It is certainly worth following up more in depth thyroid testing
    Last edited: Apr 10, 2016
  12. omron


    Hmm. Could be to do with fluid then, as I feel like I probably drink a bit less now than I did before getting ill. Is there any way to test for low blood volume?

    I will definitely list all my symptoms and tests results. I'm having a Dexamethasone Suppression test tomorrow so I'll get all the tests together after that (there have been so many it'll take me a while!

    My B12 has been 'normal' every time I've had it checked.

    I can't say for sure but I really don't think it's epilepsy. The fact that it just stopped and changed to reacting to certain sounds doesn't seem like epilepsy, does it?

    That's interestjng as my sister who has recently been diagnosed with thyroid problems - goitre, nodules, antibodies, low tsh - experiences very similar symptoms. She wakes during the night sweating, shaking, heart racing and diahorrea. She's also low in weight and has been all her life, just like me. That feels like it would be too much of a coincidence for it not to be related.

    It's a no to all of those I'm afraid. I've checked to see if my diet is any different, we have no mould and I don't react or have a problem with pollen. I have read of people with thyroid issues having to change their dose during the different seasons. That's as close as I've come to an answer.

    Yeah it feels like thyroid needs to be looked into further. It actually seems like the higher my tsh, the better I feel. When it was 1.1 I was awful! Now it's 1.8 and I feel a bit better. And it seems to always drop in the winter and rise in the summer. Although maybe that's a natural pattern? Anyway, I'll carry on pushing for thyroid investigations.

    Thanks for all the help!
    Sea likes this.
  13. Sea

    Sea Senior Member

    NSW Australia
    There is a way to test but it's not a regular test to have. It involves an intravenous line and injection of a radioactive tracer. Blood is drawn and the volume calculated based on the ratio of blood to tracer. People with ME/CFS are presumed to have low blood volume because several studies have shown that to be the case. Low blood volume is different to dehydration but does lead to dehydration more easily.

    If you aren't drinking enough and have episodes of diarrhoea then that is the most likely explanation for the higher sodium measured. Usually people with low blood volume have normal sodium levels because the composition of the blood is the same, there is just less of it. This is different to dehydration where there is less water as a component of the blood, hence things that are measured in it are more concentrated.
  14. Really


    I can relate to a couple of the things you mentioned specifically about your nervous system. I'm really sensitive to computer screens too and they seem to make my vertigo worse, but there is a difference for me between looking at the screen when its just on its desktop and doing nothing, compared to trying to watch a movie or being on the internet. I can even put a audio file on and then look away so im not looking at the screen and this seems to affect me too. It's like im sensitive to any kind of visual stimuli maybe, but it still doesn't feel normal looking at the screen either if im not watching or doing anything. i can get shakes too and someone mentioned epilipspy in this thread and that being related but i dont know. Lately looking at a screen makes my chest hurt more and my neck get tense. I saw your blog and I know you said you believed you had this illness since you were young but did you ever take any pharmaceuticals before or around the time you got more sick?
  15. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    24hr sodium is the test you want with POTS. It shouldn't be low, but might be low normal. Low normal isn't ER level dangerous, it's just not good if you have OI (Orthostatic Intolerance) problems.

    24hr Urine Sodium, Renin/Aldosterone ratio, ADH, is all tied to low blood volume and in the literature Autonomic Dysfunction and POTS.

    Personally if I have this evidence (proven low blood volume), I'd not use the word CFS as CFS is meant to be ''unexplained'' fatigue. Having low blood volume is an explained reason for Chronic Fatigue, so the CFS diagnosis would then be out of date.

    This is why 'CFS' is so dangerous to patients. 'CFS' can turn out to be Adult Growth Hormone Deficiency (ACTH stim test useless as it looks at adrenals not your brain, for your brain you need to measure cortisol (fasting) with a provocation method such as Glycogen) and then measure Cortisol and Growth Hormone, due to stressing the pituitary.

    'CFS' can also be secondary adrenal failure. Not Addison's disease (adrenal gland) but your brain not working, such as using ACTH correctly to switch on Cortisol. Are people with 'CFS' screened with a baseline ACTH/Cortisol test? NO. And they should be. NB: I won't be surprised to learn in the future it's the neuroinflammation in 'CFS' that screws up our pituitary hormones

    They (CDC) explicitly state that everything must be unexplained (Fukuda CFS Criteria). but then 5,000+ biomedical papers come out, many linked to explained fatigue - but........ the CDC refuse to alter the criteria. :bang-head:

    If you have proven low blood volume, or any other explained reason associated to fatigue, you not have CDC CFS by their own rules.

    There are 3 other legitimate disease homes to try and get diagnosed under if all other causes (such as MS, Lupus, EDS) have been ruled out:


    That's how I changed my diagnosis, but it took years. I never used to severely affected, and it's crazy that the medical profession need someone to become severely affected, to 'prove' they have a disease. Think of all the people with jobs who aren't trapped in their homes or beds, who have diseases - most of them around the world live like this.

    Just not us. :(

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