constant fatigue, all tests normal

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My first post here, not sure this is the correct forum...My symptoms include extreme fatigue (able to sleep any time), forgetfullness, brain fog, feelings of unreality, in addition to occasional restlessness and tingling in my feet. All blood tests are normal (incl. all the usual suspects, thyroid etc), no inflamation, heart/EKG/stress tests normal, testosterone within range. I'm a 62 year old male, professional musician. Drugs include mild diuretic (for cochlear Meniere's), Crestor for atherosclerosis and (previously) high LDL. 10 mg Prozac as the symptoms were deemed to be psychogenic in nature and as I have indeed suffered from many depression and anxiety symptoms in the past. 

Looking forward to your input

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14 Replies

  • Posted

    Hi, I can relate to your post very much. I finally got a diagnosis of cfs/me after being referred to an infectious diseases clinic which seem to cover this illness in a lot of health authorities. They basically rule out everything else first. I have since received a lot of help with understanding the illness and coping strategies etc but the bad news is that there is no wonder drug.

    You are not alone and if you persue a diagnosis of me/cfs you must manage your expectations. Best wishes

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  • Posted

    Yes. You've come to the right forum.  One question: do you get fatigued after doing various activities? If all your tests have come back negative, you should explore the possibility of ME/CFS. Some of the major symptoms of this illness (although many others are possible): sleep problems (too much, too little, unrefreshing sleep), postexertional fatigue, orthostatic intolerance (tired upon sitting, standing, walking for the shortest amounts of time, brain fog (difficulty concentrating or remembering stuff). Also, many people with ME/CFS (myself included) grapple with depression and anxiety. This is because of what the illness does to the brain,and because of the limitations the illness places on our lives. Just because you've had anxiety and depression in the past does not mean this is the cause of your problems now. Frankly, I think most of us have been treated as if this illness were a psychological disorder. It is NOT! Try to find an ME/CFS specialist--perhaps an infectious disease doctor. It does sound like you could well have this disease. Because of massive ignorance and arrogance in the medical community, you'll have to advocate for yourself and get to the proper doctor to get a diagnosis.
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  • Posted

    Definitely sounds like you are in the right forum, I can relate to some of what you say. Problem is they have to rule out everything else before CFS enters the picture. Not all drs are bad, mine is wonderful and extremly supportive and helpful.

    After battling this condition for many years I now feel that I am getting back to normal. The bad news is that I did it all myself and required a huge amount of will power to fight the condition

    Best of luck

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  • Posted

    Thanks guys! Yes indeed: my sleep is terrible in precisely the way Jackie describes; also no matter how long or how short I sleep, I am totally unrefreshed. As for fatigue after exertion - that's only partly true in the sense that I am fatigued *constantly* No more after walking my dog than before - if you know what I mean. Brain fog - big time! Orthostatic intolerance - yes, though not terrible. I do feel a tingling in my feet, especially after walking or standing (diabetes has been ruled out) Is the concensus that this is originally a viral disease? It would make complete and perfect sense, as I came down with a pretty vicious respiratory illness in May 2014 and the first symptoms immediately followed (mostly a strange kind of restlessness at first) I put it down to my anti-depressant at the time (Lexapro/Cipralex 5mg) pooping out and was put on another SSRI by my doc. Very little if any progress since. Thanks again. Your input is truly invaluable
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    • Posted

      I forgot to mention that tingling in feet and other nerve issues is often a symptom of ME/CFS. I have this too, big time, though early on it was pretty mild. I immediately got tested for diabetes, but tests came back negative. ME/CFS can affects many body systems, which is why there's such a big range of symptoms. Like you, many people, including me, had sudden onselt after a virus. Personally, I think this illness is causes by a virus, but the research community has yet to find out what causes ME/CFS.
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  • Posted

    Yes indeed many people develop this post virally but not everyone. Others are post operative or after a trauma of some sort. So my theory is that it's the body's reaction to a hardship of some kind, sometimes sudden and sometimes prolonged. But then for whatever reason the body can't recover its reaction and we're kind of stuck in this reactive state. Which is why so many of us have heightened fight or flight responses whilst we are ill.
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  • Posted

    Hi , it's been a couple of months since you posted how are you doing now any change   Any diagnosis?? I felt I had to give you my two pence worth. The symptoms are very like mine it took me years to find the answer , mainly through my own research and eventually a doctor who treated the symptoms not the blood tests. I am assuming all thyroid bloods came back normal ? Have you been tested for autoimmune disease ? Hashimotos ? If you have this your blood tests will almost certainly return normal possibly for years until your gland is so damaged almost destroyed . Peroxidase and antithyroglobulin  are the tests needed ? A thyroid ultrasound would probably be a good idea if you have a GP who will talk this over with you and act on the info. Very difficult to find as , for what ever reason , doctors even endocrinologists stick rigidly to the TSH T4and T3 blood tests and very rarely ask labs for the antibodies tests !! Many sufferers are given the ME/CFS " diagnosis" or their favourite depression and there suffering goes on and on with no light at the end of the tunnel. Dr John Lowe a brilliant clinician specialist and researcher is worth looking up he has treated and cured. Many many hundreds of patients ignoring  blood tests and going by watching touching and symptoms . Also dr skinner is worth looking up . There is a letter on line which describes autoimmune thyroiditis to a tee. Go to " I AM HASHIMTO DISEASE , a letter for patients, family and friends " is this you . Best wishes sy
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  • Posted

    I do not see headaches in your symptoms post. No headache at all?

    Also, what do you mean by no inflammation? This is very interesting. How did they test no inflammation?

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  • Posted

    Headaches have not been a feature, no. Inflammation has been measured both by sed rate and by the level of C-reactive protein as well as plasma viscosity
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  • Posted

    Sylvia, thanks for the input. Hashimoto's has been discounted though judging by the new information you have provided it might be time for a serious re-test. That said, I started Wellbutrin a few weeks ago and the drug has taken care of about 70% of my fatigue and other symptoms, pointing to - at least superficially - to a diagnosis of depression. We'll see how it goes and I will check in from time to time
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    • Posted

      Do you think it was the prozac making you tired then? And when you came off it and went on the Wellbutrin the fatigue lifted?
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    • Posted

      Hi! I just came across your discussion. I am wondering how you are currently feeling? Has the Wellbutrin continued to help you? Do you still have fatigue?
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  • Posted

    When you say feelings of unreality, is it like you're in a dream all the time?

    I'm curious if no inflammation is an overstatement. I don't know how accurate CRP elevation tests for localized inflammation as judgement seem to work by range, unless probably it was comparing to your own values before you had the symptoms.

    I'm 34 so I won't be acting as if I know life better than you do.

    Pull your root-canaled tooth.

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  • Posted

    Dr durrant peatfield a well known thyroid doctor believes the usual blood tests. Most doctors do are unreliable . He believes one of the significant signs for diagnosing hypothyroidism is the basal temperature on waking . You have to use the under armpit method. Take your temperature on waking then every 3 hours if your temperature is a few degrees lower than 98 -6  37% for a few days this is a better way to start looking into thyroid disease . Before blood tests Broda Barnes used this method of diagnosis way back in the thirties and treat these patients with natural desiccated thyroid . Now synthetic T4 is used   Just thought i would add another two pence worth into the mix . It's pretty thought provoking tho!!!!
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