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Glandular Fever - CFS/ME

Discussion in 'Life Changing or Long Term Physical Illness' started by sickanon2, Sep 19, 2017.

  1. sickanon2

    sickanon2 Active Member

    I have been ill for the last nine months with Glandular Fever. Originally, I was told I would recover within six months, and foolishly I continued working fulltime even after my diagnosis. Eventually, I lost my job, and thus my dream of being a graphic designer, due to my illness. Since my diagnosis, my health has deteriorated rather than improved. I live with chronic fatigue, chronic pain, headaches, muscular pain, swollen glands, and sore throat. I am in constant pain. In my efforts to find answers as to why I have failed to recover, I discovered in my online searching that there is a strong link between Glandular Fever and CFS/ME. In light of what I've read, it seems very likely that the virus has led to me developing a chronic illness. My GP is currently refusing to entertain a rediagnosis, and inisists that my primary diagnosis is still Glandular Fever / Post Viral Fatigue. I'm tired of not being taken seriously by medical professionals. I feel completely alone, and that nobody believes how ill I am. This whole situation has left me with suicidal thoughts on a daily basis. I can't continue living like this, with no answers and no medical support.
     
  2. Inastorm

    Inastorm Well-Known Member

    I'm sorry your feeling so low and are unwell.
    If you're from the UK, check out:

    https://www.actionforme.org.uk/

    Give them a ring or email for support, there are specialists in the UK that will give see you, you can ask for a second opinion from your GP, if he doesn't ring citizens advice and ask to speak to a PASS officer, they will help you make a complaint, it will be upheld as you have a right to second opinion/ to see specialise, any problems with not getting specialist due to living out of specialist area, again speak to PASS officer, as you can get a case made for out of area support.

    If you don't live in UK (I guessed from the term GP), still ring or email action for me, they will sign post you to the support you need in your country/ area.
     
  3. sickanon2

    sickanon2 Active Member

    I'm living in Ireland (the South) so I don't know if they'll be in a position to help me, but I'll contact them none the less. At this stage I'm so desperate for help, I'd try anything. Thank you for your reply!
     
  4. Butterfly

    Butterfly Sim Addict Staff Alumni SF Author SF Supporter

    I had meningitis and glandular fever in 2011 and it probably took a good year to feel better again.
     
  5. JmpMster

    JmpMster Have a question? Message Me Staff Member Forum Owner ADMIN


    I am very sorry for the difficult place you are in with not feeling like you are getting any real medical help. I spent several years feeling like nothing woudl ever help/none would actually listen and even now I hate Dr appointments because they are in large part useless in my opinion in actually fixing/treating things.

    I would like to share a few of my observations of the last 9 yeas or so - for what little they are worth.

    When it comes to diagnosis and labels, the only issue is thta as soon as Dr B reads what Dr A says his opinion is clouded and they only half listen to what you are saying and instead put al their faith in what Dr A wrote in a chart. If you ever have an opportunity to read a copy of your chart it is amazing as sometimes I have no idea how they wrote what they did base don what I said- it seems they are talking about an entirely different person. In the end, many doctors are in such a crunch of seeing x patients an hour that they do not listen very well at all. I have found thta is fixed if you are fortunate enough to be able to see the better specialists- but GP's are all a number of peopel per hour - move on.

    When it comes to trying to get a dr to change a Dx , it is always an uphillbattle,. You are asking them to put in writing that Dr A was wrong, or to go out on a limb and make their own Dx. In getting themn to do that , even if things seem a better fit many Dr's play the game of semantics- like for CFS -

    To meet the diagnostic criteria of chronic fatigue syndrome, or myalgic encephalomyelitis, you must have unexplained, persistent fatigue for six months or more, along with at least four of the following signs and symptoms:

    • Loss of memory or concentration
    • Sore throat
    • Enlarged lymph nodes in your neck or armpits
    • Unexplained muscle pain
    • Pain that moves from one joint to another without swelling or redness
    • Headache of a new type, pattern or severity
    • Unrefreshing sleep
    • Extreme exhaustion lasting more than 24 hours after physical or mental exercise
    If you did not specifically mention 4 of the items then they can simply say you did not meet the criteria. For example "not sleeping well " is not "unrefreshing sleep" technically, or if you say sometimes pain is in elbow or sometimes shoulders you did not say "moved from elbow to shoulder" . Sadly many Dr are literalists and diagnose by the book like a computer would - so if it does nto match near exactly they do not translate or ask for further clarification.

    In the end, if you are talking about things that hav eno known "cure" , the label is irrelevant. All they are managing is the symptoms anyway. Getting a dr on board with managing the symptoms is sometimes easier than getting them to agree with a diagnosis. I would not bother fighting the battle of Diagnosis so long as I can convince them to treat in a way that helps the symptoms and when going back for follow ups telling them they are treating wrong or particularly the wrong thing sets you up in a no win situation. Instead, I have found it helps to thank them for what they gave last time but really the more significant Issue I need addressed is ________ ________ ________ and list the specifics symptoms that are most bothersome, whether is pain or nausea , or sleeplessness. Get their brains off the treatment for a condition they have misdiagnosed and instead onto what can they give me to fix a specific symptom.

    I hope you find some help or relief and sooner rather than later. I will say it took several years but eventually I have managed to get treatments thta have helped. Don't give up.

    - Ben