Frustrated as yet undiagnosed

I am new to this site, so not really familiarised myself with how to best use it. I am wondering how many people who are now diagnosed have been through what I am experiencing. I am being investigated for a suspected connective tissue disease due to a low white cell count, in particular low lymphocytes, mouth ulcers, joint pain and swelling, fatigue, acid reflux and eye problems. Because I am not positive for any of the antibody tests, I am being told this is Chronic Fatigue Syndrome. I am frustrated as I have had to reduce my hours at work to four days and 'tiredness' just seems to be a lame excuse. People don't understand the extent to which these symptoms plague me. The doctor says it will either show itself or else disappear. Meanwhile I am in limbo. This has been going on for about 2 years and is getting progressively worse. Anyone share a similar experience?

7 Replies

  • Hello Kylie. I have similar symptoms though mine had a starting point of a virus being a hacking cough. I too have no energy and recurring bouts of conjunctivitis, irritability but the hardest thing is the continual low humming noise in my left ear and no hearing in that ear. I am awaiting lab results for rheumy arthritis as my knees were so painful this week i could not walk. I will post my results and hopefully a diagnosis. I live in Hamilton NZ Are you in NZ too. My dr is very good even when i quote the internet at him and so i hope you are being listened too. Thinking of you

  • Hi there, no I'm not in NZ but live in England. Thanks for your reply. I have occasional ringing in the ears too and lots of other weird and wonderful things happening throughout my system. It is difficult for the doctors to pinpoint a condition such as RA or SLE as they share many symptoms. Still, it is frustrating. I have been a party pooper this Xmas; going to bed a t 9.30 Xmas eve and Xmas night due to fatigue and sore throat with the most horrendous bitter taste which is continuous. Don't know where that fits in. Hope you had a better time. Feeling more human now and off for a swim as I do find that the right amount of exercise helps, at least psychologically.

  • Unfortunately lots of us were diagnosed with MCTD. And lots of us spent many years getting the NHS to listen. It is awful to have to make excuses for a condition that depletes your energy. Tiredness and joint pain are symptoms of many diseases so it is understandable that Drs don't want to misdiagnose. However the fact that lupus is even in the conversation is a plus. Some of us had never heard of it and the Drs were never looking for it. So hopefully you won't wait too long. At least you are in the right 'ball park'. They may be right about your problems so don't wish it. They are all rotten to deal with whatever the name. Either way I hope you get relief soon.

  • Hi kyliesinead. I count myself as relatively lucky because I do at least have a diagnosis of RA and a rheumatologist who seems to take me seriously. But my symptoms have altered significantly over the past three years and I now have urticaria on my face and neck and have suffered from sores inside my nose for two years, some kind of constant parasthesia - cold legs and freezing toes, night sweats, burning hands and feet, very dry eyes and all sorts of other strange symptoms that come and go and to me correspond more with Lupus or Sjogrens than RA I feel - especially as very rarely have swollen joints.

    Originally I was diagnosed 9 months after my symptoms started because I had a mildly positive rheumatoid factor and high inflammatory markers (have you had these checked?) and a lot of

    synovial joint pain and some swelling. But now all this seems to have gone away despite my coming off Methotrexate (DMARD) and only taking Hydroxy presently. My rheumatoid factor has gone down to negative and my ANA is also negative so my rheumy and GPs are not sure what is going on with me now - some sort of Mixed Connective Tissue thing I suppose.

    I didn't know that ME could cause a low white cell count?

    I'm not really complaining because I presently have little joint pain or stiffness but the facial hives are getting me down a bit as they are very visible and itchy and I do get so tired very easily - plus the parasthesia and burning feet are quite unpleasant. And like you the waiting game is getting me down as I keep wondering if my RA has gone away, and as I'm told this is very unlikely and my inflammatory markers are still raised I guess it might all crash around my ears again one day which is a frightening thought. So realistically I think, like yours, my symptoms will probably emerge eventually so that I get a new diagnosis or confirmation that this is part of RA -and for now it's just a waiting game for me too. So hard psychologically I know.

  • I am a strong person so am dealing with the psychology of the waiting game but it is frustrating all the same. I do have periods where I feel very well and I could conquer the world at times like those. At the moment, all my joints feel like they're on fire, my eyes and throat are sore and I have this awful bitter taste in my mouth and throat. I went to see the Rheumatologist the other day, only to be told the clinic was cancelled. I am hoping that I will be diagnosed soon as this is certainly not in my head. I have tried to ignore it and get on with life as normally as possible but it just knocks me out and I have to take notice and let my body rest. Thanks for your response.

  • I am a primary school teacher and everyone is tired! So I just feel that people wonder what's so special about me that I need time off when they are still battling on. All I know is that if I do a five day week, at the end of it I can barely think, just a zombie getting through the day. I compare it to when my kids were babies and I was deprived of sleep. But you can't go round explaining to all and sundry that it's not just tiredness, it's an overwhelming fatigue with joints that feel like they're on fire. I am sure all will be made clear in the future.

  • I have the fatigue too at the moment but not the burning joints. The fatigue upsets me most though - can't do anything energetic without having to lie down afterwards. It


    Do you think its worse to not have a name to give our conditions? I consider myself to be psychologically robust too but have suffered serious depression over the past year for first time ever. I found that taking vitamin D supplements (was deficient) made a big difference to my state of mind. Most of the teachers I know are pretty exhausted - my sister included so it must be very hard for you.

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