had this CFS thing for 25 years, want to get a diagnosis

I have all the CFS symptoms but have never been sure it's CFS. i tried to get a diagnosis years ago, but I gave up and got sucked into life's stuff again. I generally always tried to ignore my problem, but as you can imagine, it influenced my life very negatively, even though I somehow am always working at something, or I'd go crazy. Also, I always find stupid doctors, I have changed doctors twice in the last 6 months and I have to do it again. Sometimes it's really hard not to get angry at them. But I am learning to use my logic instead of emotions. Maybe they are so foppish because they think people abuse the system of whatever. I am completely alone, and generally have been so for many years. I have a few really good friends but they have their own problems, so generally I don't bring mines up. In any cases, I started to hate complaining, so I don't really complain anymore. Sometimes I hit stuff, but I don't take it out on people. Has anyone got a diagnosis and can you give any advice as to how to go about it. Thank you

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  • it could be me? or if you have tender spots on your body fibromylagia?

  • hi, yes I think it's M.E., not sure what tender spots are, I am actually on the tough side as have been training in martial arts, but yes all my muscles ache, if I write, my hands muscles ache, if I walk it's my shins (sometimes quite badly), even if I speak, I feel an aching tension in the stomach. What I meant is how do I get an official diagnosis, but thank you regardless

  • Hi,

    To get the diagnosis, involves a process of elimination, so after you have all the tests they can do, without any other obvious cause being found, the result becomes chronic fatigue/fibromyalgia. If the condition deteriorates further, then ME can be the cause, which is very similar in symptoms to CFS/Fibro. Getting a diagnosis is important, as it creates anxiety from all the waiting, so its worth persevering with your doctor, for that reason. I have found that by writing a letter to the doctor, it is important for them to respond to the enquiry, but it's not worth writing a long letter, or they get easily bored. So, just a few well-chosen sentences should be enough to get the ball rolling.

    Hope this idea helps you. Best Wishes, Tearsofaclown.

  • thank you for all the advice, a concise letter seems a good idea. My problem is that I can't find a doctor that is actually interested at all, I have tried 3 in the last year and they are all hopeless. They say stupid things like 'you feel tired because you are not taking much sun'. Makes me wonder if this is really 2013 or the 17th century. Cheers

  • I do know what you mean by 17th century!!! That's why I find it better to be a little more detached and write a letter. It gives you a better footing, from being able to show that you are an intelligent, 21st century human being, not something from an old text book.

    Good Luck, if you do decide to go along these lines. I've found same-sex doctors have more empathy to patients they can relate to, so again, I hope this helps with your choices.

  • Yes, I think it's very important to be detached. I will try with the letter. Thanks

  • I used to always feel very tired and have found an natural solution to my problem without side effects. There were not outward signs to I was made to feel as though it was all in my head. Very frustrating. The results of what I use not have been life changing. I don't know if it would be useful to you but would like to share it with you with your permission. Also at a recent conference someone with fibromyalgia spoke of how it had benefited her too. Hope to here from you soon, Look forward to transforming those tears into ones of joy! Best Wishes.

  • hi,I am usually very suspicious of 'natural solutions' or 'alternative medicine', because if it really worked, everybody affected would be using it. Often companies devise unproven 'solutions' that are just profit making systems. I am not saying I am suspicious of you, but yeah feel free to let me know what you are using. Thanks!

  • Interesting comment. I felt that way too until my health improved. When the drugs I was given made me feel peculiar and out of control, I turned to natural recommendation mainly to avoid side effects. I can't promise you it will work for you. Just suck it and see as they say. I was not able to achieve the same result from the a high street brand. I use the highest grade of Aloe Vera. It's been used in my culture for generations. My source has Government approval and top Investor In People accolades. People often are skeptical about "natural solutions", and that's one of the reasons it isn't as widely used, people just say the same as you have and don't give it a chance. Bottom line is - when all else failed I had nothing to loose and everything to gain. Today my health is testimoni to its effectiveness. Hopefully, when you experience a benefit your wont care what anyone else thinks, so long as you get your life back - like I have. My mother never knew she could use it for her arthritis as a child she only used it as a shampoo. Try and keep an open mind. Don't play to anyone else's tune. Not even mine. After all only you feel YOUR pain.

  • Hi, that's exactly my point. I don't play to anyone else's tune, I also speak from experience.I am actually open minded, like you wrote, who cares what is it, if it works, it works. But there's a lot of rubbish around so it's smart to use critical thinking. But I am definitely going to try Aloe Vera, I would be dumb not to. Thank you and be well, P

  • good comment pianist!!! YOU ARE SO RIGHT

  • yah,,but some solutions do work

  • Damn straight.

  • caesar, well at least now we know that 'some solutions work'. All we need to do now is search through the billions of 'solutions' and try to solve your little riddles.

  • Are you in the UK ? Ask your GP to be referred to Bath ~ Royal National Hospital for Rheumatic Diseases, Upper Borough Walls, Bath BA1 1RL 01225 465941

    info@rnhrd.nhs.uk

    rnhrd.nhs.uk

    If your GP refuses, ask them why, and to put on your notes that you requested referral and that he/she's refused and to put their reasons why. This is a handy tip for anything that you want. Your GP is there for you !!

  • yes I am in the UK. Very helpful information, thank you

  • hi, thanks so much for the info. I had a look. Do you know if there's alternative clinics like the one you mention, in or around London? I can't even afford the tickets to go to Bath....let me know what you can, thank you so much

  • I'm not sure if this will help but my doctors got around to diagnosing me pretty quickly.

    I wrote a list of every symptom I had that I could think of and took that in with me to see one doctor. She prescribed me anti-depressants and asked me to come back a few weeks later.

    My partner wasn't happy with that so he asked me to see another doctor. This doctor told me it might be PVFS (post viral fatigue syndrome, which is CFS brought on by a virus) and Fibro.

    After 6 months had gone by and nothing had changed he changed my diagnosis to M.E and Fibro.

  • it may be sleep apnea

    what size is your neck

    do you snore

    do you have morning headaches and a dry mouth

  • it may be sleep apnea

    what size is your neck

    do you snore

    do you have morning headaches and a dry mouth

  • it may be sleep apnoea

    what size is your neck

    do you snore

    do you have morning headaches and a dry mouth

    and a host of other things that goes with osa

    including heart disease

    diabetes

    cf

  • it may be sleep apnoea

    what size is your neck

    do you snore

    do you have morning headaches and a dry mouth

    and a host of other things that goes with osa

    including heart disease

    diabetes

    cf

    depression

  • There is a private hospital on the Kent and Sussex border where the main doctor has a particular interest in CFS/ME and does single consultations which can be very helpful. If you are down this way, just message me and I'll give you details. (It's the one where I went for my post-op rehabilitation, physiotherapy etc. after my hip replacements.

    Take care

    Ann

  • hello missrat, I am based in North London, would I be able to see the gp you mentioned? Don't they just accept patients who live within the area?

  • It would probably have to be a private consultation, but you can refer yourself. I think a consultation is £76. burrswood.org.uk

  • ..have you checked out your vitamin d levels ? Take a look at the vitamindcouncil.com and grassrootshealth.org It is so important in overall health so do read up on it. Also check out your thyroid with a full profile of TSH FT4 FT3 and Anti-bodies. Do it privately if your doctor resists.

    I was diagnosed with PMR - then FM - slept for several hours a day - and then at 59 was diagnosed with a Thyroid problem and the recovery has been amazing. FM/IBS/ME all came into being when the medical world changed over from Natural Thyroid Treatment to a synthetic T4. Suddenly in the 70's all these syndromes appeared as doctors became so dependant on Blood Tests for thyroid diagnosis in stead of looking at symptoms. OK I am not a medical person and of course there are people who will disagree with me. But hey surely it's worth eliminating before going down the no-hope route.

    Check out Thyroid UK website and the Health Unlocked for Thyroid. The people there are amazing and so supportive. Am happy to answer questions you may have....

  • Marz, what were your symptoms? Mines are physical 'fatigue' but it's not normal fatigue, it's as if the muscles in my body were doing a lot more effort than they really are. I am, ironically, a fit guy and did lot of (painful) exercise, but the symptoms were not brought up by these. I feel this 'fatigue' in every muscle of my body, for example if I write a letter I will feel the muscles in the hand really straining. Same goes for walking, when I feel this extreme fatigue in the shins. I also feel it mentally, this goes away for a couple of hours if I take a nap, but the physical symptoms are always there.Thanks and be well

  • I felt as if I was carrying a sack of coal on my shoulders.....and walking through syrup. It's only now that I am well that I can attribute so many problems to the dreaded Thyroid ! Having had so many problems and 13 operations I kept blaming the past - Crohns and Ileo-Caecal TB. I even gave up a career and started my own business so I could slope off in the afternoon and sleep !

    Other symptoms....dry and thinning hair. Loss of outer third of eyebrows. Dry and flaky nails. Skin problems - vitiligo on neck. Nasty itchy spots on arms. Weight gain. Loss of sharpness in thinking. Debilitating muscle aches and pains which made it impossible to sit still for any length of time. Bone pains. Lowered libido. Gut ? - due to surgical interventions over the years. There must be others I have forgotten !

    Since treatment began I have slowly improved and now at almost 67 I am feeling top dollar ! OK I live in Crete so I swim a kilometre a day in my pool for 4/5 months of the year - I play tennis once a week - teach yoga 2/3 times a week - walk my dog for half an hour most days....and generally enjoy life. Looking back yes I tried to do all those things but paid the price - pain and fatigue.

    Auto-immune Thyroiditis is the most common form of thyroid illness throughout the world. It is what both Hubby and I have - Hashimotos. In the UK they rarely test the Anti-bodies - Anti-TPO - which attack the thyroid and render it inefficient. So without testing how would they know it is not your thyroid ? As with all auto-immune conditions it starts with the health of the gut....inflammation in the gut is the root cause of most conditions in the body - including the heart. So gut health is important and as Hippocrates said - let food be your medicine..... Had I stayed in the UK I would still be ill as they would not have tested the anti-bodies as the TSH FT4 and FT3 were all within the ranges laid down by the powers that be... Cost is at the route of the problem.

    Thyroids produce a hormone called T4 which has to convert into T3 and this is required by all the trillions of cells in the body for everything to work. T3 is low in many people and soon Low T3 Syndrome will be a recognised condition !! Many people have difficulty converting T4 into T3 - I am one of those.

    You need good levels of B12 Ferritin Iron Folates and VitD for the conversion of T4 into the ACTIVE T3. Doctors will say your are fine even if you are at the bottom of the range - those pesky ranges again ! But if you have health issues then you need to be high in the ranges. b12d.org The other sites I have given you. Check you own signs and symptoms against the list on thyroiduk.org.uk ...you do not need to have them all !!

    I could write pages and pages - so I wish you well with what I have written so far and am happy to answer questions. Hope you soon feel better....

  • thanks Marz, I will look into all you mentioned. I must say that some of the symptoms don't match mine at all, e.g. I have an opposite problem with libido (too high, lol), and my 'only' other symptoms I can relate to with yours, are loss of sharpness of thought, feeling like a fog is around me (walking through syrup, or , as I say, deep trough sand). I am genuinely happy that you are feeling top dollar. I have dreamt about this for years. I remember that before my symptom onsets, at 15, I was always running around....I was very physical. Cross fingers, I will feel as good as you, one day. Cheers

  • ...unless you have the tests you will never know. What is so wrong with eliminating a condition with the proper testing ?

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