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Tina 58520

Posted , 4 users are following.

tina58520
tina58520

Hi everyone, decided to join the groupd today.  I have had CFS/ME since 2008 when I was 44.  I managed to work up until May2013 part time of course.  I had a bad relapse which brought me into moderate stage, and unfortunately I have not worked since, and lost my job April 2014. 

 It is to be sure a very dibilitating condition which I find many people do not understand.  Meds:  Well I have tried amytriplyine, Naproxine, Gabapentin, and currently on Pregablin. (sorry for any spelling mistakes). Yes, I agree with anyone who says the tablets don't take away the pain, it just takes off the edge if you are lucky.   I have gone from a working mum, to having real bad mobility issues, lots of pain especially down one side, numbness, headaches, to name but a few.  I have had to have my home adapted e.g. grab rails fitted, a commode in case of emergency, and a wheel chair when I just can't walk too far when out with family.  I still drive but very short distances locally on a good day.  I have recently undertaken CBT but this did not work for me.  I was told to do things in small stages, this is hard to get your head around if you were someone who was always on the go.

I wish each and everyone of you luck in finding a good place to be where CFS/M.E is concerned, especially when it comes to convincing those in charge of benefits that this is a chronic illness whereby most of us don't know how we are going to be from day to day, or hour to hour some days.

I too would be interested in people who have overcome this dreadful illness and have been free of it for a considerable length of time.

1 like, 5 replies

5 Replies

  • david59662
    david59662 tina58520

    Posted

    Hi Tina, had my CFS 14 months now. You are so right when you said-

    'convincing those in charge of benefits that this is a chronic illness whereby most of us don't know how we are going to be from day to day, or hour to hour some days.'

    I often tell people i can't make plans, i have no idea what i'm going to be like tomorrow. Then i might have to attend a medical assesment for benefits when the reality is i cannot leave the home. So difficult.

    • tina58520
      tina58520 david59662

      Posted

      Hi David, sorry to hear about your CFS of 14 months.  I really understand you when you say reality is cannot leave the home.  I can some days, but have been housebound for week or so.  I too have taken a fall at the end of September last year and fractured my elbow which then saw me housebound for 4 weeks straight off.  Nightmare!  It is interesting in the replies I have had to see how many people have varying symptoms and how they try to cope.  I have just read about someone having a nerve test to ascertain why she is getting pins and needles, I have asked for one of these but was refused.  Interesting how G.P.'s operate, expect it all down to money and resources again.

      Best wishes

      Tina

  • guy72767
    guy72767 tina58520

    Posted

    Hi Tina....thankyou for sharing your story...all to familiar...I am in a severe relapse at present..had cfs for 34 years with managable periods...plenty of experiences. ..if you wish to message me you ate entirely welcome and I will do my best to reply when I can....very best wishes, Guy
    • tina58520
      tina58520 guy72767

      Posted

      Hi Guy, many thanks for messaging me.  You prove a point which I would like the professional who gave me six weeks of CBT to take on board and understand, not everyone overcomes CFS/ME.  She has this notion that small steps over a period of time will be the answer to everything.  Not being negative but if you are doubled up in pain and can't move this seems light years away.  My own brother told me a story of how he worked with someone who had cfs and was off work for two years and now back like nothing wrong with him.  Yet again some people do not understand, that we are all different and deal with things differently including overcoming illness and healing.  I was beginning to think I was in a minority having this debilitating illness for just over 6 years.

      I wish you more manageable periods, pain free of course.

      Best wishes

      Tina

  • guy72767
    guy72767 tina58520

    Posted

    Hi Tina....Message me any time...might be slow to reply, lol, but i will respond...wishing you well...Guy
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