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.