Do I suffer from Fibro?

Discussion in 'Fibromyalgia Main Forum' started by DJohnsonUK, Feb 5, 2010.

  1. DJohnsonUK

    DJohnsonUK New Member

    I shall start with an introduction. My name is Debbie and I live in the UK. When I was 11 years old, I had an illness called Mesenteric Adenistis, within 6months of coming out of hospital I lost 6stone and found daily life a struggle. These are my symtoms:

    -Bad memory
    -Easily tired
    -Aching joints and muscles
    -Diffculty sleeping or sleeping to much
    -Frequent loss of appitite
    -Frequent pregnancy scares (Late on period and exsecive urination)
    -A pattern in my pains: If I go out on a Monday the following Wednesday my pain will be segnificantly worse.
    -The feeling of my muscles shaking
    -Pins and needles in my fingers/toes
    -Sensative hearing
    And though I dont know if it is linked, but I find concentraition diffcult if there is noise in the background, sometimes I find it hard to speak (Mid sentance loss of memory) and also dyslextic type symtoms.

    I require your aid due to the fact today I finally had the courage after 10 years to go to my doctor. Upon me being there 3 minutes, he asked me to leave.. I did not ask for a diagnosis, I simply asked for information and help with finding out more about possible reasons for my difficulties. I only mentioned Fibro, then, and I quote, he looked at me and said "I'm sorry Miss Johnson, but I have a really busy surgery this afternoon." and opened the door for me leave.

    I hope someone here can shine a light on my situation, thank you very much.

  2. richvank

    richvank New Member

    Hi, DJohnsonUK.

    It sounds to me more like what we in the U.S. call chronic fatigue syndrome, but is probably better called M.E. (myalgic encephalomyelitis) in the UK, because the psychiatrists have taken over the term "chronic fatigue syndrome" there, and what you have does not sound psychiatric.

    I know of two physicians in the UK who are experienced in treating M.E. One is Dr. Sarah Myhill in Wales, and the other is Dr. Andy Wright in Bolton.

    I hope this is helpful.


  3. DJohnsonUK

    DJohnsonUK New Member

    I have just found a CFS/FMS clinic in london who has a website, email address and telephone number that I can use. I think that is my next port of call, however, thank you for your recommendations, I shall most certainly look them up should I require.


    Debbie Johnson.
  4. AuntTammie

    AuntTammie New Member

    I really urge you to consider posting the name of the clinic here before you go, bc unfortunately, many of the clinics in the UK are notoriously terrible for treating CFS/ME, and others on this site from the UK (or probably many of us from the US) could tell you if the one that you found is typical of the UK treatment, or not. (I can tell you rt off to avoid any centers associated with Peter White or Simon Wessely...or NICE guidlines.)

    I hate to sound negative about this, but as Rich mentioned, the typical response in the UK is to treat CFS as a psychiatric disorder, and then to push CBT (they will tell you that CFS is a result of "abnormal illness beliefs", and they will refuse to accept that it is caused by anything physical, though there are many documented physical abnormalities in CFS patients) and then they will push graded exercise on you.

    Though this may possibly be helpful to a small subsection of patients, it can actually cause a lot of harm to many, and has not actually been tested at all on the more severely ill. This kind of treatment led to the death of one patient in particular, and I am unbelievably forgetting her name rt now, just remembering her initials, SM (thanks to my foggy brain). They are also fond of sectioning CFS patients in the UK.

    (US treatment is often not much better, so don't think I am just saying this to disparage your country.....I am most definitely not doing that, but rather am trying to save you from emotional and physical distress from getting mistreated simply for being sick.....and, also, feel free to check on what I am saying with anyone here - though this may sound a bit extreme, I am not exaggerating about this)

    The two Drs that Rich mentioned both have excellent reputations for treating the real physical issues in CFS, and there may be some others that I don't know of who someone else could recommend. Good luck!
  5. DJohnsonUK

    DJohnsonUK New Member

    I found this from UKFibromyalgia website's friendly doctor list.

    The London FMS/CFS Clinic
    Central London and Guys Hospital
    For a free information pack contact Daniel Austen on 01438 812165 or

    I wont be making an appointment, I need a local doctor, as I dont drive and I have two children to handle. But I wanted to chat to someone that may know surgerys in my area and how I go about this.

    I'm not completely unfirmilliar with M.E/Fibro either, I neglected to mention my mother and older brother who have both been diagnosed. My mother in 1984, infact! But thats also the reason why i've never really spoken to them that much about it, I never wanted them to think this was a 'CopyCat' syndrome. However, all of that was put to bed last week when they all sat me down and had a difficult convosation with me, which resulted in me booking that doctors appointment. For the last 10 years i've found something else I could blame this all on. Busy with school, depression, pregnancy, two kids, ect ect. But now i've been on St Johns Wort for nearly a year, i'm running out of reasons.
  6. DJohnsonUK

    DJohnsonUK New Member

    Okay, thats it. I no longer see the point. My mother in law and partner of 2 years just told me that because i'm thinking about it, i'm feeling it. Whats the point of a diagnosis? I can cope at the moment, I dont need medication or a word on my notes which would only catagorise me. If I get worse, i'll seek help.. Though I doubt i'd get any.

    Thank you everyone for all you advise, I think perhaps you are a minority of people I feel I could come to and talk about my bad days.
  7. Nanie46

    Nanie46 Moderator

    It sounds like a chronic borrelia burgdorferi infection to me...that is chronic lyme.

    All of the symptoms you mention are common to chronic lyme.

    Many people who had a fibromyalgia or chronic fatigue syndrome diagnosis, later found out that the CAUSE of their symptoms was borrelia burgdorferi and common coinfections like babesia, bartonella and ehrlichia.

    The mesenteric adenitis sounds like Bartonella symptoms.

    Here are some links you should read carefully...

    Look at the symptom list on pages 9-11, and the coinfection info on pages 22-27 of this expert's paper....

    There is a lyme board here. There is also a very active lyme board at where you can use the Seeking a Doctor board to find a Lyme literate MD (99% of Dr's are not lyme literate). also has a great Medical Questions board.

    If I were you I would find a Lyme literate MD and get a good thorough evaluation.

    If I were you I would also get a western blot IgG and IgM, test #188 and #189, through Igenex lab in

    Any regular Dr will order a "lyme test", see a negative result, as most are, and tell you that you don't have lyme for sure....which is WRONG.

    Lyme is a clinical diagnosis based on history and symptoms, not a lab test.

    I only had a fibromyalgia diagnosis for 21 years before I figured out on my own that the cause of my symptoms was chronic happened to alot of others here also.

    Hope you get some answers!

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