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newly diagnosed

Posted , 5 users are following.

nichola99319
nichola99319

Well after almost 2 years of tests, i have been seen by rheumatology, gastro, endocrine, gynae, immunology, renal. Had ever test under the sun. i finally asked for a referral to a CFS specialist who i saw on wednesday. I am relieved to have a daignosis as to whats been causing my problems. I have been suffering for 14 years with problems, but was not too bad till 2 yrs ago when i bought a horse, and i was getting ill quite frequently. Luckily i sold my horse, but symptoms never went, kept crashing every few weeks. I thought i had CFS, so i started to try change my life.

The CFS team were brilliant with me, and will arrange for me to go back and see the OT now for pacing, but i am lucky unlike some, i only have it mild, dipping into moderate.

I have took up meditation and trying to change my thought patterns to more positive ones. I am just relived to know it wasnt in my head!!, some GP's/consultant have poo pooed CFS when i mentioned it to them. they even said it a mental thing, and one said to go on anti depressents, even though i was never depressed!.

years ago i asked the question and was poo pooed, to the point i never ever went back, and put up with the illness (albeit was lot better than now back then)

Anyhow, i can now move forwards with it, and learn to manage it.i am so very grateful for this site and all the advice i have been given, i didnt realise back them that i was the one making myself ill, by doing too much physically and mentally too.

So BIG thanks XX

1 like, 3 replies

3 Replies

  • sally_14743
    sally_14743 nichola99319

    Posted

    Hi Nichola 

    so pleased the clinic has helped it did for my hubby too. But you haven't caused this illness lots of people work too hard and stress too much and don't get it .. There are other factors ... Otherwise Africa and India would be full of people with m.e who work 7 days a week and have a meagre existence .. It's viruses, pollution etc as well... 

    But to recover yes you do need to stop over doing it and stressing ..pacing etc and I am sure you will start to reap the benefits of your OT help and start to improve towards recovery ... So so pleased for you 👏😊

    • caitlin39841
      caitlin39841 sally_14743

      Posted

      Hi Nichola, i'm so very pleased to hear you've had a good experience with the ME/CFS clinic. it feels that these clinics are learning to meet people's 'actual' needs, rather than their Governmental outcome targets.

       when i did the ME course some years ago, there was a 'culture'  of  ''if you try harder you'll do better''. of course pushing beyond one's energy availibility is detremental. i relapsed badly whilst doing the  course. i acquired new neurological symptoms as a result of instruction to push harder & cut out the daytime sleeping. these symptoms  have remained and become more marked & debilitating with time. 

      i do hope you make progress with the 'Pacing'. be kind to youself - this matters. in time, with well managed pacing, dietary etc interventions you have every chance of fully recovering.  

      all good luck.

      C 

  • pam_87693
    pam_87693 nichola99319

    Posted

    Well done Nichola, yes I had all the same thing years ago, thankfully my GP is going to a conference on CFS, I am glad you had all the tests! Just one thing did they ask if you were double jointed? I do hope they did even if you aren't! 😜💕
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