Undiagnosed and rare conditions
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Feeling ill... and undiagnosed after 2 yea

tracky1tracky1 Member Posts: 8 Listener
hi there I’ve just joined and thought I better introduce myself in more detail.
if this is the wrong place I have posted this, forgive me, still trying to find my way around.

ok so my story goes back around 7 years when I started noticing extreme tiredness. Dr prescribed iron and vit d. I was a working mum with a toddler so I just got on with it. Fast forward to 2016 the tiredness had changed to fatigue and could be debilitating at times then I became not well with a virus and the onset of various symptoms that haven’t really left me.

Woozy head (no Vertigo), severe brain fog, motion sickness with movement of head, dull ache at bottom off skull, fatigue, periodic numbness and pins and needles in feet. A flush across cheeks that comes and goes that’s been diagnosed as rosachea, body aches, sprains. I am easily bruised although not excessively large but do experience random purpura, I have hyper mobility in most of my joints, I get fatigue in my legs when walking up stairs and fatigue in arms when raised for any length of time. Titinus periodically, my jaw clicks and pops as do most of my joints etc. I suffer at least a handleful of these daily but symptoms change but there all around flaring up periodically. I suffer from Achilles tendinitis and plantar fasciitis off both feet too that I’m attempting to repair through excercises.

i have been referred to neurology and had mri on brain which was clear and ruled out ms, my lumbar spine mri only showed two bulging discs at bottom of spine ( now I know what causes the pain at the bottom of my back when standing for any length of time.) referred to rheumatologist  My bloods have all came back clear showing no signs off autoimmune which rules out lupus or another connective disorder they identified hyper mobility although gave no input on this, I’m hypersensitive to local anaesthetic too ( that’s fun at dentist and hospitals... not lol) Thyroid, diabetes etc all negative.  Ent does not beleive it is within my ears. I have been referred to sleep clinic too as I experience sleep apnea at times.  I attend initial appointment this Tuesday for this.

My doctor beleives it to be viral? I pushed her at my last visit to determine if we could be looking at anything else, she said no. I guess due to the negative previous tests. I know I have cfs right now but this has never been diagnosed or even brought up by my doctor. I beleive I may have a few differen things going on that may or may not be related.

ive had to give up work for the time being as my body couldn’t handle the fatigue crashes... now trying to claim universal credit which is another story.

ive learned to manage most days and accepted my symptoms whatever they might be that day. My worlds smaller now and I have learned to manage my life through pacing. I do forget sometimes and pay for it the next again day but sometimes it’s worth it to experience things on the good days.  Sometimes it does drag and get me down. I try and stay positive but I just feel ill at times. I’ve learned not to really discuss things like my health, people don’t really want to know, or they say it’s stress or anxiety. Plus I’d be going on about it daily, my close family know of course and a couple of good friends.  Sound like a complete hypercondriact and I don’t blame people for switching off.

I would like a dianosis off something for my own for my own peice off myself  so I know it’s not all my in my head.

oh and I have two beautiful children my oldest is 9 and he is finally being referred on the ASD pathway after 3 years fighting, my little girl is 6 and I beleive suffers from SPD although undiagnosed and my husband suffers anxiety. Lol we are a delightfully challenging family. I guess pretty normal in these times though. Every family’s got something going on right.

sorry for the book I’ve just written...

Tracky x


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  • deb74deb74 Member Posts: 760 Pioneering
    hi tracky1. i have ME and your symptoms seem to me to be the same as mine. don't be suprised if your doctor doesn't take your symptoms seriously. i was originally told it was all in my head and there was nothing wrong with me. i have since changed dr. mine started 3 years ago after i got a really nasty vertigo bug. i am lucky i have a very good friend who also has ME and he is always there if i need someone to talk to. i would try a differnt doctor if i were you. at first all my symptoms were overwellming and i didn't know what was happening to me. hope that has been of some help.
  • jennyjuniperjennyjuniper Member Posts: 5 Listener
    Sounds like autoimmune disease to me.  I have Primary Sjogren's Syndrome and had a similar problem with diagnosis.   In fact a lot of your symptoms similar too.   I was sero-negative at first but am now RO52 positive and have abnormal creatine kinase.  Confirmation of PSS was by lip biopsy, saliva measurement and Schirmer test.  The first rheumatologist I saw couldn't find anything wrong, he only did blood test,  and told me to come back when I needed a hip replacement! My GP thought I did have an autoimmune disease, but didn't know what it was.   After asking for a second opinion I saw a different rheumatologist and got a diagnosis.  That was ten years ago.  Now I attend the Sjogren's clinic in Newcastle and sometimes the CRESTA clinic as there are connections to CFS.  Recently had electromyography which has ruled out myositis for the time being but still have the symptoms.  Now looking forward to a muscle biopsy.  
    It does help to put a label on things even if, as in my case, there is no treatment.  At least you feel you can give yourself a break for feeling like rubbish. 
    Not sure if this is much help, all I can say really is I hope that eventually you will find somebody that can give you the assistance you  need.
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @tracky1, and welcome to the community!

    So sorry to hear about your situation, I can really empathise with feeling so unwell and not being able to find the answers. You mentioned that you'd had various referrals, but I wondered whether you'd considered seeking a second opinion from another GP? Sometimes, this can be a really useful way of identifying things that haven't yet been investigated.

    I'm by no means a medical professional, but from a personal perspective, it may be worth looking into M.E. This is a long-term condition that differs from CFS, and having a diagnosis of this can open the door to many more condition management options. Again, this is something that it may be wise to talk to your GP about. Please do let us know how you get on, and do come back to us with any questions! 
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