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CFS/ME

Posted , 16 users are following.

pauladam1969
pauladam1969

Hi everybody,its my first time on these types of forums ive never been on one before.so hear goes

im a 45 year old man and ive been diagnosed with cfs/me late last year after having this disability since 2008,i used to be very active had a responsible job as a manager in retail,now 7 years later im starting to slowly except that my disability is not going to dissapear and i have to except that.its been a long and rough 7 years,my marriage broke up,i now live by myself in rural cornwall and dont really mingle with people outside since my disability,i get very anxious,i was never like these,i know i need to build up my self esteem but its so hard.

i have pains from my hips to my toes,the only way i can explain it is like running constantly and the pain you get in your legs (i remember doing cross country at school many moons ago)and thats the type of pain im in,there sore,painful,i use a rollator to get out,which took some getting used to as at first i thought everybody is looking at me,but if i wanted to go out i needed to use it.

since living by myself i do shopping in my town,my daughter helps me which is great.

ive not come on this forum to moan just to listen to other people who are in the same boat as me.

be great to hear from someone.

1 like, 53 replies

53 Replies

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  • tina58520
    tina58520 pauladam1969

    Posted

    Hi Paul,

    I am so very pleased you decided to join this forum.  I joined a few weeks ago and log in when I can.

    I am 51 this year, and was diagnosed with CFS/ME 2008.  I held down a very good career with a well known charity, part-time until 2013.  Yes, I agree with everyone who says stress makes the condition much worse.  I was overloaded from a working capacity and thus had a major relapse which saw me from still being able to work and enjoy life all be it with careful pacing, to a stage of being bedbound, and still now almost housebound.

    I am not ashamed to say I felt very sorry for myself, and heartbroken for the career I had lost.   I have worked from the age of 17 and never ever been unemployed or claimed a type of benefit for this.  I was utterly confused and frightened of the future and what it held.  6 months after losing my job, I lost my Mum, so you can see how bad things got.

    On a positive note, with the support of family, and encouragement from my G.P. I am back on my feet although it be with support of wheelchair for the worse days and crutch/stick other times.  I too will not give in to this condition.  I have started to do a task a day (with pacing), and am building.  It is not easy, but we all know it isn't, and we all know that we are not the only one going through this.  Knowing this helps me to get by.

    Pain in legs, oh yes!, from the hips down to toes, and also in the arms.  I had tried everything, now I am on pregablin which seems to take the edge of it.

    I too remember cross country, but it always sticks in my mind because I use to walk most of it and always came last!! lol.

    I am sure that you have had and will receive some very good advice/tips from the people on this site, and I know that we are all with you, working towards that better day that is achievable.

    Good luck

    Best wishes

    Tina

  • melanie00616
    melanie00616 pauladam1969

    Posted

    Hi there,

    At 39 I ended up with such bad fatigue out of the blue, that couldn't even get out of bed.

    Before that person that would have Rome built in a day!!

    After extensive research, training and people being put in my path found out that it was because of early menopause pending.

    Our hormones control over 400 of our bodily functions and actually our are bodies building blocks.

    I am under a professor in endocrinology which I found through the pituitary org.

    If you google hormone imbalance you will see it lists CFS and I know that the pituitary org treat men with testosterone cream to give them their energy back, etc. etc.

    I so hope this helps and if you need any further info on this always here.

    ps. the patches they have given me has given me my life back!

    • melanie00616
      melanie00616

      Posted

      p.s.  forgot to say that wouldn't recommend your gp for any blood tests on this as need to be done at specific times.
  • june83698
    june83698 pauladam1969

    Posted

    Hi Paul and everyone what a blessing to find this forum makes me feel I'm not going mad after all.  I've had my me/cfs since Jan 1990, took 5 years to diagnose at Kings college hospital in London.  My local GP's  are still in denial and say they have never come across long term cases and it's only a short term condition.  I agree with all the coping tips that have been suggested and wish I had been aware of them years ago - I learnt the hard way, did all the wrong things in order to overcome it and make myself better by sheer willpower - it doesn't work.  your body reacts so differently from one day to another, it's such a confusing illness  Anyway best of luck to everyone, brilliant to be listened to. Thanks

     

    • georgeGG
      georgeGG june83698

      Posted

      Yes it is good to be listened to. To be doubted and contradicted is so damaging. I find I am still a little anxious that my testemony will not be believed. Quite ridiculous really but there they are buried deep those wounds of decades ago. No web and no forums then to bring me comfort and point the way to health. What a blessing this formum is. I thank everyone who takes part.
    • pauladam1969
      pauladam1969 june83698

      Posted

      I'm glad I'm not the only one,saw so many consultants over the 6 years and it was only last year that my doctor said well it maybe a case of ME/CFS,

      It just makes me so angry sometimes when u talk to these people and they think your pulling a fast one or find it hard to believe.

      I used to hate going to my doctors as I felt he didn't believe me,I'd had enough and wrote a letter of complaint in early 2013,since then he has totally changed,but its a shame it had to come to that

      Think positive June

    • june83698
      june83698 pauladam1969

      Posted

      Thanks Paul good advice for everyone keep positive when you get down it all becomes overwhelming and leads nowhere.  Thanks for the support everyone x
    • bronwyn97278
      bronwyn97278 pauladam1969

      Posted

      Yes; as you all may have already read my earlier comment on same issue, re one doctor who told me "I was overstressed and needed to go and have a game of squash", and then stuffed me up more, by inserting acupunture needles into me to help me to relax..this just Knotted up the Nerves around the areas, and to this day, if I could sue him, I would, for the lack of, not only the mental anguish, but the lack of income/super etc, that my knotted nerves caused....that was the reason I had to give up my nursing career completely, as the pain from these knots was sooo severe, that I then had to start taking Neurontin...and not being a safe practitioner....I tell all, you know who you are, and ALWAYS believe in yourself...
    • georgeGG
      georgeGG bronwyn97278

      Posted

      . . "ALWAYS believe in yourself" I do so endorse Bronwyn's advice.

      i am my own ONLY executive doctor. My physicians are are my advisors and treatment facilitors. 

  • olivetree
    olivetree pauladam1969

    Posted

    Hi pauladam

    Sorry to hear you've had such a rough time. Has your doctor referred you to a CFS/ME specialist clinic?  I have also recently had a formal diagnosis and am now linked in with specialist support and will also be able to see occupational therapist who will hopefully be able to advise me about how to manage my condition around work.  Did you have to give up work completely? I work part time but I'm really struggling to do it right now and wonder whether i shall be able to carry on much longer.  I also get pain in my legs and feet but hands and arms too. Feel so weak sometimes.

    I hate feeling like this but i refuse to think I won't get better.  There have been times when my symptoms have almost disapeared and then it seems to come back but one day I am hoping for them to go away and never return.

    Welcome to the forum it's good to be able to talk about our condition with others who really do understand.

    • pauladam1969
      pauladam1969 olivetree

      Posted

      Hi olive tree

      Yer I've seen a pain management consultant and he said about getting a tens machine,which I have but if anything its worse after I've used it on my lower back as it gets so painful.I don't use it on my legs as a few people on here have said not to as it could get even worse.I've got an appointment with the physiotherapist to show me how to use it and the best way to use my rollator,as because when I'm out I walk with a gait and drop my shoulders,that doesn't help with the back pain,but makes it easier on my legs.

      I worked up until 2008 as I had abseses and and found difficult to sit down had about 12 operations and finally gone(touch wood) and in between 2008-2010 my legs started getting painful etc.

      So no I can't work as can't stand unadided for more than a minute or so and can't sit properly as I still get pains on my bottom and can get uncomfortable. I've finally got help from the DWP to do an online course in IT,as most of my working life I've been in retail manager etc,but I know I can't go back to that,and I have to except that.

      It used to get me down really badly,but its not to bad now a days,well off days but most people have them.I take fluxotine for depression I have done for 3 years now.

      Phew

      But think positive 😊

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