Feeling a bit frightened - waiting for diagnosis
It has taken some courage to post on here as my symptoms are so non specific and sometimes I feel like I am going mad and if I am totally honest, I have been trying to distance myself from a Lupus diagnosis and did not want to believe having that is possible - if that makes sense.
For ages now I have been feeling really exhausted, to the point I could walk somewhere and not have the energy to walk back. I start the morning not too bad and by the end of the morning would sneak off to the toilets at work and rest my head for 10 mins :(
Gradually this has become worse, I wake up early hours of the morning with a weakness in my body that would make it impossible to walk, I feel as though I have had my bones removed. When I get up in the morning my ankles, knees, hands/wrists are so sore - I am taking 2 panadol/codeine in the morning as I cannot take NSAIDs and sometimes if the pain is bad - in the evening as well.
My hip hurts - as though it has dried out, the other week I noticed one side of my face was stinging to the touch and I had a mouth full of ulcers, this went away and then I got a cold sore on my lip - just get rid of one and then I get another.
Headaches - my goodness, a migraine type pain that starts with a pain/pressure above the right eye, and pain in my neck.
My head has gone 'cloudy', I am studying something I love at college (part time as I work during the day) and sometimes I can see things clearly and then its like clouds come over my head and I cannot concentrate and could stare at a computer for hours and not do any work.
Swollen eyes - I look like I have the biggest eye bags and my eyes are so dry and my vision is blurred and my mouth is dry as well. And dare I admit it - I am dry 'down below', I am 43 so thought 'Jesus Christ, this is the menopause', mind you the menopause is a normal healthy part of life but I still dont look forward to it - especially the dry part and now I have it anyway and it isnt menopause :(.
Dizziness, last year I got out of bed and felt as though someone had spun my world around and I fell on the floor, doctor couldnt find what was wrong and prescribed anti sickness tablets which didnt help and I periodically have the room spin round on me even now.
Emotional, I cant seem to cope with stuff I would normally cope with, when my Dad went back to the UK after a visit, I was ill for days afterwards - I dont know why. Earlier this year I was giving first aid on the scene of a car crash and I had a punching pain in my sternum, I thought I was having a heart attack, I wasnt panicking or anything but the pain was dreadful and I periodically get it now. I had to stop going to the gym as when I did strenuous exercise I would get chest pain and my heart would become irregular.
Sometimes when I breath in I get pain as well and it isnt my asthma, but its not often enough to see a doctor.
Strange vibrating in my feet, I feel like the floor is vibrating - but that could all be in my head I suppose.
Reactions - whenever I get bitten by a mozzie, I react terribly - my joints swell up and I become ill, I was bitten by a redback on Saturday and felt dreadful, my leg is now so bruised I look like I have been kicked - I bruise so easily.
Just before my period the symptoms are magnified and I feel awful. Although I have never been a sunworshipper - I am very pale skinned and have to take vitamin D supplements as I am low with those levels, I have to swim in a rash vest, hat and sunnies and have used total sunblock since moving to Australia from the UK but still, I feel awful in the sun, I cannot go out without my sunnies and my aches are even worse - why is that? I thought cold weather made joints worse not hot weather.
I know these symptoms do not make sense, I dont blame you for thinking that but I feel like my body doesnt want me anymore, that it doesnt like me - in fact I am crying just writing this down :(
Anyway, I went back for my blood results, expecting a thyroid problem and my GP has pointed out the following:
ANA is 1:320 - positive speckled pattern and mildly elevated CRP at 8
Parietal cell antibodies negative
Renal function - high end of normal - retest in 6 months
Urine - erythrocytes top end of normal
The GP referred me to an Immunologist - the next urgent referral (private) is for first week in July and I am also on the waiting list for another specialist who has an appointment for June so I can choose which one I want to see.
The waiting is so hard, I thought it was in my head but my GP said it isnt as there is clearly something going on.
Did any of you feel this frustrated waiting to see someone? I am also in turmoil as I have heard that one of the specialists I am down to see is very bossy and patronising and with my current mood swings, I am not sure how good I would be in dealing with that.
If any of you know of good specialists in the Perth area, could you let me know - I wouldnt mind knowing if anyone knows of either consultant that I am due to see, I dont want to post their names on here.
Apologies for the garbled post, my head has gone cloudy again.
You know, my husband was nearly killed in a car crash just under 2 years ago and I had PTSD just after, got some therapy and have come such a long way, my life is good right now and I am in a good space mentally and just as things were going my way, I now have this - life can be like that I guess.
Anyway, thank you for reading this - it probably sounded daft, it does to me. I guess I just have to choose which consultant to see and hope I can wait until either June or July.