Awaiting diagnosis

Hi all am new around here, and am currently awaiting diagnosis.

I had some blood tests a month or so ago and because the tests didnt indicate I have lupus and also dont indicate

that I dont so I have to do my anticoagulants again in august

In the meantime summer is here the sun is shining

and the slightest hint of sunburn and I want to sleep.

Just arrived at a friends house and the velux windows are

Killing me due to the amount of light,I need a cool dark place to hide in.

11 Replies

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  • I don't know if I have Lupus or not? Latest blood test said no! First one said yes! I don't know where I stand? I do know I have spent my whole life avoiding the sun- always made me ill, I also have very odd health problems. Dislocating thumbs limbs, butterfly rash the peculiar month when I couldn't walk at all? No explanation! Now I'm stuck trying too get off the tramadol which is not easy! I have disintegrated in 3 months! I have gone from being someone who could do everything for herself & being a dancer in my spare time ! Too someone who has too depend on her boyfriend for everything & still no explanation! I don't know what to do anymore? I'm stuck on highest dose gabbapentin codeine & diazepam! & I just get labelled fibromyalgia- which has become unbearable! As I'm hyper mobile! I have life threatening food allergies asthma & feel like a freak! I'm very stressed out as I am. Appealing against atos & I blame them for making me ill & the poverty I'm now in! So not peachy! I feel like a freak of nature! I'm so ill & unhappy & now it's all psychological apparently!

  • I have heard so many people mention about suddenly not being able to walk( including me)...yet every doc I meet seems to have never heard of this...drives me mad! Don't let anyone tell you it's in your mind....if a plane crashed and investigators didn't manage to find out the cause they wouldn't tell the victims families that it mustn't have happened and it's probably in their minds!

    One day doctors will wake up and get it...

  • Hi Hun

    Im new too!!!I know exactly how u feel. Two yrs ago I hurt my back so my GP's started me on all of the drugs you mentioned. As my back and health got worse they just increased my dose. Last yr I was referred the pain management clinic and had all sorts of pain relief and it felt as tho I had severe sciatica and back problems as my back went into spasm. January this yr my GP increased me up to 1800mg Gabapentin and caused me not to eat through loss of appetite. Then as my new job started in April and was forced to move my symptoms got worse. The itching and feeling tired, headaches, dizziness is the worse, but I also get sore dry eyes, hair falling out, sore parts of body, aches all over, loss of sex drive, confusion, severe mood swings and more. I've been shouted at by a back consultant who discharged me twice saying I needed to see a head doc (mental) cos its all in my head. However thanks to having work medical insurance and not pre-existing and health got worse due to work I've been able to see a Reumy. Saw him today and I've bin told I've def got fibromyalgia but have also got all classic signs of lupus. Within an hour I had my bloods and several ex-rays done. Going back Thursday to get full diagnosis. But looks as tho I have both : ( so I'm here if u want to chat. Don't mind posting my number 07766222875 it's good to talk and all us sufferes care. I feel like a proper freak and cant enjoy the sun too cos of the butterfly rash. take care....Good luck and am here if u want to talk. lucy x

  • Just back from the derm specialist today and i was basically dismissed, eczema she said, fine to go out in the sun, so i went out for an hour and my face is already weeping, i have an appt with her again next week, i hope she's right but i know my GP will be gobsmacked as she disregarded all the blood and urine tests and said she is not qualified to judge my other aches and pains.

  • Take pictures of the face and bring with you. Say to her that you would like her to explain to up you IN WRITING why she believes this is not autoimmune given the blood tests. If she asks why you want it in writing say that you need it for your records, in case you get worse. The thing is that without a written advice, doctors can always argue that you have misunderstood what they said in consultation because it is your word against the doctor's. Once things are written down they can then be used as evidence in any negligence claim, so assessment and advice tends to be expressed more carefully, to avoid issues later on.

  • Fantastic idea x

  • You could also consider a referral to a Rheumatologist who would look at all your blood tests and skin and symptoms. Good Luckx

  • Hi Ronson

    I know you will be wanting a label for all your symptoms but for your sake I do hope it is not lupus as it is an evil illness, although it can be managable if it is. I do think it is worth bringing to your attention though, if you are a sun worshipper, that the effects of ultra violet rays can make your symptoms much worse and make life hell, I am photo sensitive to the extent that I have removed flourescent lighting from my house and all low energy light bulbs. If I go out during the day all year round no matter what the weather I wear gloves, scarf, long trousers and long sleeves I also make sure that any exposed skin is well covered with at least factor fifty sun cream. If the sun is strong I stay indoors the only time it is safe for me to go out without taking these precautions and not make my symptoms worse is when it is dark. So please for your own sake don't sunbathe and risk sunburn as you will make yourself feel awful if you are found to have lupus and are unfortunate enough to be photosensitive.

    I hope you get some answers soon and that this has been useful to you

    Madmagz x

  • Thanks for the support it seens everything i do seems

    to confirm further with the symptoms and triggers, photo sensitivity

    is a nightmare the lights in supermarkets shops and shopping

    malls set me off usually i just feel like dropping to the floor

    and sunlight makes me itchy and sleepy and its worse

    if i give in to it, I have to force myself up to do anything

    Add to that the compexities of hypothyroidism, depression

    Unexplained rashes and phlebitis, I do hope its not lupus

    but whatever it is if it can just be bagged and tagged

    that would do me fine, me needs to start wearing me hat

    I thinks and buy suncream, sunglasses in shopping malls

    look a bit weird too but they help.

  • Hyper mobility is linked to lupus as well as many other conditions, it takes a long time it seems to get the correct diagnosis. I have had an argument with my daughters gp and insisted she refer her to a rhuematologist as my daughter suffers from depression along with many other things, they always say oh your depressed! She may well be as she feels ill and tired all the time but in my opinion they are not getting to the root cause. We have many genetic conditions within the family that could be linked and I'm just wanting them all ruled out. We have an appointment in two weeks to see the rhuemy, so fingers crossed we get some explanations. Unfortunately no matter what the problem, you have to fight to get help and when feeling ill you can't be bothered. I hope you have someone that can help you through this. Good luck in finding the answers that your looking for. Take care in the sun. Xx

  • I knew it! Thank you! I knew hyper mobility & lupus were linked!

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