Discussions By Condition: I cannot get a diagnosis.

chronic fatigue or what????

Posted In: I cannot get a diagnosis. 48 Replies
  • Posted By: tpotsparky
  • October 21, 2006
  • 09:39 PM

Im nearly 40 and have suffered alone with this condition - the only description I call it is chronic fatigue. Only recently I got the G.P to refer me to the Chronic Fatigue service in Leeds, U.K for assessment but the shrink reckons i dont have C.F.S/M.E. I didnt think I did as the precursor seems to be normal health - viral infection - C.F.S/M.E. My symptoms have been with me for as far back as I can remember into childhood: Chronic Fatigue, Memory,poor concentration, lack of energy for exercise, and over the years total lack of sex drive, chronic weight gain and joint and muscle problems. With this is the usual barage of phsycological problems that go with these symptoms. Its having to cope with the long periods of unemployment, lack of social skills and friends and a partner which doesnt make me anamoured of life at all. All you get from the medical profession is "we doctors dont have all the answers" which seems to me to be a cop out!!!. Is anyone else out there suffering similarly that could throw some light on my predicament?. Anyone know of any research programs here in the U.K specifically for chronic fatigue symptoms not necesarilly C.F.S/M.E - I would be obliged for any feedback - thanks - Chris

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48 Replies:

  • Sounds more like depression to me
    Anonymous 42789 Replies
    • October 21, 2006
    • 09:41 PM
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  • Have your hormonal levels checked. Many times hormonal levels can play a part in the symptoms you described.
    Anonymous 42789 Replies
    • October 21, 2006
    • 10:46 PM
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  • Have you had thyroid hormone levels checked? Have you tried going to a country with more sunlight? Like on holiday or something? No offense, but when I was in England I realized it was a lot harder to be happy and energetic when you are stuck in doors all the time and it's cold and gloomy and gets dark at 4pm. (Although I did grow up in southern caifornia.)One last idea- have you looked up Cushings Syndrome? It's way more common than one would think, at least in the U.S. (However, most of the patients who exhibit the symptoms are usually on steroids for immunosuppression for things like asthma.
    Anonymous 42789 Replies
    • October 22, 2006
    • 02:00 AM
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  • I have M.E/CFS and your symptoms sound very similar to mine, excessive tirdness, flu like symptoms, muscle aches and pains, weight gain (although this can be weight loss in some people), memory loss and short concentration span, can't hold a job down etc... Along with many others!As far as "it sounds like depression" goes depression is a symptom of having M.E/CFS, not the other way around!!!!Most GP's have little or no understanding of this illness and it took me 3 years before I was finally referred to the M.E CLinic in Essex, the specialist there is also a neurologist and is wonderful! There is no magic pill that makes you better but they do teach you how to manage you illness, time and lifestyle!Check out their website www.nmec.org.ukI also have a light box as SAD is common in people with CFS/M.E I hope this helps a littleB
    Anonymous 42789 Replies
    • October 22, 2006
    • 00:16 PM
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  • I disagree and would say that ME/ CFS are merely somatic manifestations of depression. Chronic Fatigue is a symptom rather than an illness. Most commonly it is a symptom of depression (although I saw a chap once who had it as an unusual symptom of Lyme disease!)
    Anonymous 42789 Replies
    • October 22, 2006
    • 05:18 PM
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  • I would like to think my symptoms are depression but having tried quite a few anti-depressants over the years (PROZAC) being the worst by far none of the others had any effect!!. Also - I dont suffer with the muscle and joint pain all the time as described by a lot of M.E/C.F.S sufferers, only if i overdo it with say digging in the garden. Although within the last few weeks ive been using a petrol strimer which has now left me with a painful left elbow and the pain wont go away!, which the doctor has diagnosed as tennis elbow!!.
    tpotsparky 1 Replies
    • October 23, 2006
    • 06:29 AM
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  • I know for a fact that M.E/CFS is not depression, it is an illness and it is a shame that others do not see it like that!!!! This is what makes it harder for those suffering with it. I also believe that unless you've had it you do not really know what it is like!!!!I also believe that my specialist/professor who travels the world and is well known within the M.E areana knows what he is talking about!I know that M.E is not a form of depression, you get the depression from having M.E as it changes your life and for a while can stop you living your life as you were before = depression!!!!!!!!!! I was not depressed before having M.E and it took a while for it to manifest itself therefore it cannot be that M.E is depression. Now I have my life back and know how to deal with the M.E I am no longer depressed!!!!!!
    Anonymous 42789 Replies
    • October 23, 2006
    • 01:54 PM
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  • I totally agree with you.There is a great book - Living with M.E by Dr Charles Shephard, this also explains how depression is a result of having M.E.M.E is an illness and those that think it is not should perphaps read a little more into it by the professors who research M.E and work with patients suffering from M.E. Those who think it a state of mind have obviously not ever had M.E/CFS.
    Anonymous 42789 Replies
    • October 23, 2006
    • 02:00 PM
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  • People suffering from depression often do not want to go out, gym, for a walk or even just to socialise. They prefer to stay in and watch TV etc alone... M.E suffers want to go and and be normal and live their life normally which will often result in the tirdness, flu like symptoms, muscle pains etc etc Which then makes them realise that they can't live their lives as they previously had which results in depression!My friend was a happy go lucky type who was very fit and active,she now has M.E and wants desperatly to get her old life back. This made her depressed but she underwent a lifestyle management course and is getting her life back together and is no longer depressed, she can see the light at the end of the tunnel! I believe M.E is an illness (I have been to a few hosp app with her and listened to the professor) and that depression is a symptom of this disabling illness (some people end up in wheelchairs!)
    Anonymous 42789 Replies
    • October 23, 2006
    • 02:11 PM
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  • Info RE: M.EPay particular attention to the section where to be diagnosed with M.E some other illness have to be omitted first ie depression! However I can understand how and why some people may confuse the 2, but with the correct info it is clear that there are many differences!M.E is an illness and I think it is very important for people to understand this and not to belittle this illness! WHAT IS M.E? ME can and does affect all age ranges, from young teenagers to the elderly. The peak age tends to be between 20 and 40 and the incidence seems higher amongst those in stressful occupations. ME, or Chronic Post Viral Fatigue Syndrome, is primarily a brain disorder which typically occurs in a vulnerable individual, often at a time of stress, as a consequence of a viral or recurrent viral infection. Clinically it is a fluctuating disorder of energy control (fatigue). Symptoms commonly include prolonged recovery from any activity, muscle pain, sleep disturbances, disturbances of memory and concentration, irritable bowel, abnormal temperature control, emotional lability and mood fluctuations. The consensus view is that the average duration of the illness is four years and up to twenty percent of sufferers fail to return to previous levels of functioning. The severity of this disorder varies, though some patients are disabled for years. It is estimated that there are around 150,000 people in the UK today suffering from ME and related chronic fatigue syndromes. The loss of working hours and the inter-related burden upon social services amounts to many millions of pounds annually, less alone personal stress that cannot be measured. Disease Definition The centre is set up to see fatigue syndromes of all types. It recognises that chronic fatigue syndrome is an umbrella diagnosis and that the illness content varies from patient to patient. It includes that disorder designated myalgic encephalomyelitis (ME). It recognises therefore the need to advise and recommend very individualised treatment packages. The centre accepts the criteria as described by Fukuda et al 1994 as being suitable for the diagnosis, namely "substantial fatigue newly acquired of greater than six months duration which may be associated with cognitive or neuropsychiatric symptoms". It requires four other symptoms from a list of eight which includes recurrent sore throat, cervical lymphadenopathy, myalgia, headache, impaired memory multi-joint pain, unrefreshing sleep, post exertion malaise. It excludes medical conditions that can produce fatigue and psychiatric disturbances such as melancholic depression, substance abuse, manic depressive disorders, psychosis and eating disorders. The definition recognises Idiopathic Fatigue Syndrome - for those who do not fulfill the criteria of chronic fatigue syndrome. These include those with a life long history of fatigue symptoms (Fukuda K, Strauss S, Hickie I, Sharpe M, Dobbins J, Komaroff: The chronic fatigue syndrome; A comprehensive approach to its definition and study: Ann. Int. Med 1994; 121; 953-959. Our concept is that chronic fatigue syndrome (ME) represents a profound disturbance of functioning of the nervous system (brain) and its connections with the immune system and endocrine system (hormone).
    Anonymous 42789 Replies
    • October 23, 2006
    • 03:44 PM
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  • "Primarily a brain disorder" - couldn't agree more!Unfortunately the bit of the brain affected is above the tentorium cerebelli!
    Anonymous 42789 Replies
    • October 23, 2006
    • 06:29 PM
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  • M.E CLinic in Essex, the specialist there is also a neurologist and is wonderful! BI worked at that hospital, and in that clinic. I started working there, with an open mind about CFS, but after 6 months, my experience convinced me that 1) the vast majority of patients there were depressed or had psychiatric or behavioural problems2) there is no basis behind this 'disease' since none of the patients had any abnormal blood tests/MRIs/ or any of the numerous tests that cost 10s of thousands of pounds.The specialist there is a neurologist, but he had no neurological explanation for the 'disease', and there was no neurological treatment for the manifestations of the 'disease'
    Anonymous 42789 Replies
    • October 23, 2006
    • 07:50 PM
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  • I also believe that my specialist/professor who travels the world and is well known within the M.E areana knows what he is talking about!Funnily enough, although his title is Professor, he's not a Professor of Neurology, or any other medical speciality.
    Anonymous 42789 Replies
    • October 23, 2006
    • 07:54 PM
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  • I agree with a lot that's been said particularly about M.E. but I picked up on the 'weight gain' part as I have an underactive thyroid and weight gain is one of the symptoms, that and tiredness, lack of energy. The Thyroid if it's not functioning properly plays a huge part in energy levels and an underactive thyroid can also cause depression. Get it checked out with a simple thyroid hormone blood test and good luck.
    Anonymous 42789 Replies
    • October 23, 2006
    • 08:15 PM
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  • Let's say, hypothetically speaking of course, that you're too lazy to work for a living.You don't want to lose your income and beer tokens, and don't fancy being unemployed (and the DSS makes it such a hassle- always making you have to go to collect your dole money, plus you're not a lazy unemployed scrounger after all, are you?)What does one do when faced with this paradox? Well disability living allowance of course! That way you not only get money, but you get sympathy instead of scorn, and special parking place which means that you don't have to walk too far into Tescos.There is problem with that though- you have to have a disability. Oh bugger, I'm as fit as a fiddle! I'm sure if the doctor did any tests on me they'd all be entirely normal. That's a real problem!Hang on a minute! What if I could find a convienient diagnostic label, which I could wangle into counting as a disability. One that had only fuzzy, subjective clinical features, and no demonstrable clinical signs. Nobody can prove that I'm NOT experiencing a fuzzy subjective symptom after all!Better still, what if I could find a diagnostic label where having a battery of normal investigations is expected!Now, this M.E. thing, I've heard a bit about that...
    Anonymous 42789 Replies
    • October 23, 2006
    • 08:56 PM
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  • There's nothing bloody wrong with you all. Please get out of my surgery and never shame it's doors again- I'm not interested. Either get your depression treated or bugger off!That felt good!
    Anonymous 42789 Replies
    • October 23, 2006
    • 09:29 PM
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  • I have had chronic fatigue for nearly 10 years now, I seemed to get it after a bad bout of EBV.I personally hate the term CFS, as it seems to be a large basket that doctors put you in when doctors dont know WTF is wrong with you. I do however share many symptoms of other people with 'CFS', including the original poster.Things that annoy me about CFS (other than the symptoms):- People thinking it is because you are depressed- People (espeacially doctors) thinking you are a hypochondriac- There is no blood test that says, 'yip, you definately have CFS'- There seems to be no cure all, although different treatments help different people.CFS can cause depression, I have had depression, I have gotten over my depression but I still have CFS. Now I am not depressed what-so-ever, I am annoyed I have this 'thing' they currently call CFS, but I am not depressed so please don't insult my intelligence and tell me I am and that is the cause of all of my problems. I have choosen to ignore my CFS for the past 6 years as much as possible in the hopes it would just go away. I decided to look into it again recently, unfortunately it appears there hasn't been any headway in terms of public opinion or research.
    Anonymous 42789 Replies
    • October 24, 2006
    • 08:39 AM
    • 0
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  • Thank you, at least you know where I am coming from. And I agree that CFS is a bad term to use!As for being lazy as one thread suggests - I actual work and I am not and have not ever been on benefits!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I enjoy my work and wont ever go on long term sick I want to beat the CFS and live a normel life! Those that are in wheelchairs and can't work surley have the right to benefits the same as other patients with other illness's do????I also had depression that maifested from the CFS but the same as you I am not depressed now and still have CFS.Alot of people have their own views on the CFS team but like their website says it is based on the individual and no two people with CFS are the same!!!!I have had some good experiences there and was very happy with most of what I learnt att he lifestyle management programme!Research is constantly being done around CFS and I hope at some point some real concrete evidence comes about and proves all the cynical people wrong!!! Then those of us with CFS can fill like like human beings and not made to be fakers!!!!! I was not an ill person before the CFS so why would I start making things up now!I have had throid tests and those have all come back clear. My partners Mum has throid problems and although occasionally tired she does not express the same sympotms as CFS and her tablets helped her tirdeness no end.I find the amount of negative comments very sad and I can now see why some people get very depressed about their illness, there is not the support needed from the public and the GP's!
    Anonymous 42789 Replies
    • October 24, 2006
    • 10:34 AM
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  • It is also not that easy to get disablility allowance, I have met a few people that were turned down! This not only shows the lack of understanding around CFS and its symptoms, my friend could not walk to the bottom of the road or wash her own hair!!!! However she didnt want sympathy and wanted to live a normal life a possible!Through my friend I met someone that had been turned down DLA twice, so it is clear that there are not that many people on DLA with CFS!So need for the cynical people to worry that these poor people are spending your taxes!The thread that says I still work - good on you, keep your chin up and ignore the cynical comments!
    Anonymous 42789 Replies
    • October 24, 2006
    • 10:39 AM
    • 0
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  • I also believe that my specialist/professor who travels the world and is well known within the M.E areana knows what he is talking about!Funnily enough, although his title is Professor, he's not a Professor of Neurology, or any other medical speciality.Maybe so but I am sure as a dr who has worked within this field for many years and has seen many patients from all over England and internationally, he knows more than the average person whether they worked there or not!I have met many many patients from the clinic and it was clear to me that they had depression through having CFS and the way it changed their lives etc... Some of course were severly depressed but hey we are all different and illness's no matter what they are affect people in different ways!Perphaps people should stop assuming and actually talk to those with CFS and see what really is going on, we are the best ones to discuss this illness - we have it!!!!!!!!!!!!!
    Anonymous 42789 Replies
    • October 24, 2006
    • 01:22 PM
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