CFS? No formal diagnosis. Advice please?

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Hi there, a good few years ago now I came down with a horrible illness while on holiday in Turkey, I honestly thought I was at deaths door. Prior to this I had always been healthy and active, rarely in the house! Not long after I recovered and got back home I noticed I was very fatigued, had various enlarged lymph nodes tender to the touch in various parts of my body, often felt sick, chest pains, joint pains and many other symptoms to boot. Went off to the docs and their first worry was lymphoma, so was signed off work for 2 months while they investigated this. Many tests later and it was determined it wasn't likely to be lymphoma but I still had all these symptoms? My doctor then mentioned CFS/M.E to me and that it was a likely culprit..however I've never been formally diagnosed? Right now I'm going through a very bad patch, I'm in horrific pain and feel too tired to get out of bed most days along with struggling to concentrate at work and struggling to string sentances together. Does anyone have any suggestions on how to push for a formal diagnosis? I'm sick to my back teeth of doctors appointments with no real result sad

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13 Replies

  • Posted

    Hi Charlotte, i have CFS 18 months, iam 35 y/o. I got my diagnosis after 6 months of negative tests, i believe this is the criteria to get the diagnosis. On reading your post i also felt like i was dying in the beginning of the illness with an infection of some sort, swollen lymph nodes etc Felt ten times worse than any flu. I too was always active and outdoors, marathon runner/triathlete. Don't give up, make sure your GP tests you properly. Definetely make sure you get a lyme disease test, ask for western blot test as well as standard ELISA. Good luck ! How old are you ?
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    • Posted

      Thank you David, it's nice to hear from people who have similar experiences. I've had negative blood tests for soo long now. I must admit though I havent been as persistant lately with going to my GP as I had just given up totally. I've got an appointment next week, in severe pain today from my neck to my ankles and naproxen/ibruprofen not even touching the sides! I'm 21. 
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    • Posted

      Charlotte prioritise lyme disease test as it can often be missed. Also make sure your GP does an ANA (anti nuclear anti-body test), they often take months to do this test, but tell them you want this done. I've spent THOUSANDS on testing and everything was normal. I'm currently seeing a local Chinese doctor who has diagnosed me with kidney yang defieincy, it actually made the most sense to me when i looked it all up. good luck let me know how you go !
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    • Posted

      I agree with David, please don't give up, in fact keep pushing your GP until you get a formal diagnosis even if this means more tests, which I do appreciate can be hard to cope with but are important to help eliminate other conditions.

      If your doctor has already said that ME/CFS is a possible diagnosis then also ask for a referral to the nearest ME Clinic. I'm not saying that they will have any magic bullet to provide a cure but wth a formal diagnosis from an ME clinic, then other health professionals do tend to take that little bit more notice of you and my ME consultant has been a huge help in getting tests done and even diagnosed an unrelated arthritic hip that required surgery, missed by my own doctor who was taking the common attitude we tend to get from GPs when half the time they treat us like hypochondriacs or just hope we go away..  ( Try Googling " Heartsink Patient "... :-) )

      You do need to get every other potential diagnosis addressed and funnily enough, a good ME consultant can take more care doing that too in my experience.

      Don't let yourself become one of the many unheard and untreated sufferers as often the NHS is quite happy to let you be. It really is a question of  "He who shouts loudest gets heard" and as this has obviously been going on for some time you deserve being treated better....

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    • Posted

      Thank you very much David, I will take note and ask for this when I speak to my GP next week! It's funny you should mention seeing a Chinese doctor as this was also recently suggested to me by a family friend. I'm glad you have gotten a diagnosis that makes sense to you and hope you're well - thanks for the advice.
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    • Posted

      Thank you artistmike, I really am in a position now mentally and phsyically where I just want some answers and I'm ready to face whatever this is! 

      Sometimes I do feel like this is all in my head and that I am some what of a hypochondriac when I rattle off all my symptoms and hear myself complaining daily but it's really reassuring to listen to all of your advice, I really appreciate it.

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    • Posted

      Yeah i know the whole TCM thing can sound a bit odd but after 18 months full-time research on CFS with little answers this has been my best explanation as to what caused my CFS, what it is and how to fix it. I had to stop working and sell my flat because of CFS it has been a huge deal for me, i thought i had cancer, ms, you name it. I now see CFS for most young people as a form of adrenal burnout, as desribed perfectly in TCM. You do NOT need acupuncture to remedy CFS in Chinese medicine, it may help you with pain though but in terms of rebuliding the deep energy you have lost the herbs are best for this. Good luck !
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  • Posted

    I feel for you Charlotte, I hVe resorted to making an appt for a private consult after three years. I need to know what I'm dealing with. Good luck and I hope you feel somewhat better soon
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    • Posted

      Thank you very much Paddiwhack, I wish you all the luck in the world and also hope you feel better soon and get some answers.
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  • Posted

    Your symptoms sure do sound like ME/CFS. Many GPs are very ill-informed about this illness. It's best if you can see an ME/CFS specialist. Infectious disease doctors are a good place to start. There's no cure for this illness. In case you do have it, don't push yourself or you can get a relapse with worsening symptoms. Pace yourself--that's the key. Eat healthfully (no sugar or caffeine), get as good a night's sleep as you can, and de-stress as best you can, whether it be through meditation, listening to music, or taking deep breaths. Stress is your enemy. Best of luck.
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  • Posted

    Hi Charlotte;  I thought I may just add a little more to the other replies.   I am noting your comments re your PAIN in so many parts of your body....has anyone mentioned Fibromyalgia to you, as well?   I went for many years thinking/feeling the symptoms of CFS, but the pain that I feel in muscles (extreme flu-like pain....like muscles/skin burning and the continual aching)...has led us all (drs and myself) to agree that they're all over-lapping.  Which means treating each syptom, as there is no cure, at present, for either Fibro or CFS.....much research and input from this forum. One lady has advised us to have blood test for T4T3 Uptake (even if Thyroid test is negative)...which I have done, and awaiting the results....this lady has had her's done, and is now taking a low dose of Thyroxin, which she says has given back a lot of her Energy....but does not cure the disease completely....but as many of us say,  some more energy would be great.  Along with my other meds, I also take Bitamin B Executive to help me to unwind and rest, and drink Berroca (an energy vitamin supplement)  1 tablet dissovled in water, daily......does any of this give you help with your symptoms?    let us know,   Bron
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  • Posted

    Hi all, I didn't have a very successfull appointment last week. My GP basically told me that you don't get 'diagnosed with ME', that she is going to re-do all the same tests I've been through (just had bloods taken yesterday). She was in such a rush to get me out of the chair as she was already running late that she skipped over the majority of my symptoms. She never did anything or said anything about the chest pains, stiffness in the morning (it's gotten so bad I wake up and cannot move or grip anything for the first wee while). I had to mention about 3 times that Ibruprofen/Paracetemol does NOT give me any pain relief when I have severe muscle/joint pains - she told me she would write a prescription for codeine prosphate, which I now have. She told me to book another appointment with her next week and maybe she will put me on amitriptyline. I have this appointment with her tomorrow to disucuss. Has anyone had any experience on amitriptyline? Please...any replies would be soo appreciated. At the end of my tether. 
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    • Posted

      Hi Charlotte,

      I am sorry you are hVing such a frustrating time. I am awaiting a diagnosis too but I saw a private dr and he feels I am likely to have fibromyalgia after ruling out polymyalgia.

      I have very similar symptoms to you

      I do have a friend with fibro and she takes amitryptiline and finds it very helpful so I would say it certainly may help you. I take xeristar 60 daily (it's an antidepressant ).

      It does help me a little with the pain .

      I wish you a speedy diagnosis and some comfort

      Regards Kelly

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