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What should I do?

Posted , 4 users are following.

nichola99319
nichola99319

I am still under the care of various consultants, I basically get ill every few weeks, heavy limbs, shaky, heady, sometimes short of breath, glans up in neck, sometimes sore throat, can affect my stomach and feel sickly, fatigued, runny nose, u refreshed sleep, myalgia sometimes,poor concentration, feel very flat and down, can't focus or be bothered doing anything, and everything is a struggle. I struggle to work but I go in anyway.

my bloods all normal except I have low compliments, and slightly raised immunoglobulin m. I have been like this for 14 years, I am 37 now. It has got significantly worse in the last couple of years, if I did anything strenuous I would get ill, swimming makes me ill, holidays abroad I get ill. I am always freezing cold when others are warm, yet I am hot at night. I have been under endocrinology, rheumatology, nephrology, gastro and now immunology and had cut scans etc. I tested positive for Epstein Barr virus and CMV but no active infection. I have mentioned CFS to consultants but they poo poo it because of my low compliments and immunoglobulin which is fair enough, I get that. The immunologist does wonder if I have a chronic viral infection causing my symptoms and so does other consultants, I have not mentioned CFS to her, and wondered is it worth mentioning, if I go out for day out with family, or do a gentle 2 hour walk I am floored afterwards and need to go to bed, this is when I am well. I have also crashed 5 times in the year, where I have nothing in me at all, and I sleep all day. When I have these flare ups they last about a week, in between I have normal energy unless I go for 2 hours walk/ day out.

i am just wanting some advice really, to see what you think. 

0 likes, 4 replies

4 Replies

  • olivetree
    olivetree nichola99319

    Posted

    Hi Nichola

    You have nothing to lose by mentioning CFS to your immunologist although I understand your reluctance after all the poo pooing from other consultants. I think you should mention it as your symptoms certainly do seem to fit. Ask her if she will refer you to CFS specialist/service for their opinion.

    In the meantime try not to push yourself it will only make things worse and (as you mentioned) it already is. I struggled on for years like you, trying to work (part time) and live a 'normal' life whilst continuing to feel unwell and experiencing these crashes. House work, social events, outings, long country walks and even short walks, reading, gardening ..... all those things became more and more unmanagable until I found that the only thing left in my life was struggling to work for 3 days and crash out for 4. I can't even do that now and have had to drasically reduce my hours at work to just a few and even this is a struggle. I am only doing this because I am hanging on to the hope that I shall improve in time and don't want to lose it. To be honest I could do without working at all at the moment. Don't want to scare you but really do try and pace yourself more carefully, you cannot beat CFS - if this is what you have - by fighting against it. It will always pay you back! The way forward has to be in recognising and calculating what you can do without triggering pay-back. It's not easy.  A referral to  CFS support will hopefully at least confirm one way or the other and help with learning how to manage it. Either way, I would suggest you research what you can about it, slow down, pace yourself.

    Hope you get this sorted out soon.

    Good luck.

    • nichola99319
      nichola99319 olivetree

      Posted

      thanks so much, i will mention it when i go back to the immunologist xxx
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