Symptoms

Hi all hope all are as well as can be.

I've not yet been diagnosed with anything but I've been referred to a rhumy been told I could be waiting upto 18 weeks to be seen.

Anyway I'm getting so many different symptoms I don't no if I'm coming or going so would be nice if you could shed some kind of light on what I'm experiencing.

I have a rash well it looks more like I've been sunburnt but not been in the sun across my cheeks only seem to flare on night time and feel like my cheeks are on fire and my ears burn also get red blotches across my neck and chest.

Glands regularly flare up for no reason in neck under arms and groin.

Constantly got dry eyes and mouth.

Pains in my chest that radiates to my back

Numbing and tingling left arm that goes into fingers.

Back of my knees swell when in bed at night and constantly ache

Random muscle twitches

Heart burn and digestive problems ibs

Sharp type electric shock headaches

Palpitations

Muscle aches and pains wake up most mornings feeling like I've been to the gym when I've not

Night sweats and random burning up throughout the day.

Always tired

Sleep problems

Ulcers in mouth and nose

There's probably more but there the main ones. Please some help would be grate as feel like I'm going round in circles and it's taken about 3 years for the doctors to finally do something.

Sorry for long post emma. Xx

11 Replies

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  • So, tell me your symptoms then??? Sorry. Ive seen some Christmas shopping lists shorter!🎁🎁🎁🎁🎁🎁🎁🎁🎁

    Em, you poor lamb. Horrid! Frustrating! Miserable, ALL of them.

    Welcome to your first best reource. YOU ARE NOT ALONE EMS!! You have done very well to find our caring community and we welcome you with soft hugs and warmth.

    I have just discovered that someone seems to have flipped a switch and waiting times, over various specialities have suddenly shot from 6-16 weeks. I am

    Not amused for one. On the NHS website it still does say UP TO so crossed fingers its a merry pre Christmas jape.... Chances? 💭

    You will be well supported here and will learn much to help you as your knowledge expands

    Best wishes Ems

    Love

    ⚽️

  • Well you have almost identical symptoms to myself... I was diagnosed with lupus earlier this year and now also being investigated for fibromyalgia. The problem is that there are so many other conditions and illnesses that have similar symptoms so I'm afraid it's just waiting for the rheumatologist to investigate. If you can convince your doctor to request ana blood tests in the mean time that could help when you come to see the rheumy.

    Hope you get answers soon. know how it is not knowing...

  • Thank you for replying.

    Think I'm going to go docs on Monday and ask for ana test as my symptoms are getting worse and see if they can get me an appointment quicker I think 18 weeks to see someone is a piss take to be honest.

    Is it true that a ana test can show up negative and you can still have lupus? And that it depends how active it is in your system at the time for it to be positive

    Also with your first appointment with a rheumatologist what do they do?

    Many thanks emma xx

  • Also forgot to mention that I suffer from low iron count on and off and low vitamin d doctors have now put me on a low dose of vitamin d tabs for the rest of my life.

  • It's different for all people you can be positive and not have lupus and you can be negative and have it. but they will compare it with your symptoms and other tests. As far as I know it's sedimentary rate test that can show negative if lupus isn't active. But Im know expert. I only go on my own experiences and what I've researched.

  • Hi there,

    I am sorry to hear that you are experiencing all these issues. Once you see a rheumatologist they will be able to run the necessary tests to diagnose you.

    I understand that having to wait must be frustrating though. You could try phoning the consultant’s secretary regularly to see if there have been any cancellations and whether they are able to fit you in sooner.

    You might find having more information about lupus useful and you can request an information pack here lupusuk.org.uk/request-info... on our website as well as have a look at various other leaflets we provide about the condition lupusuk.org.uk/publications/ including a leaflet on the symptoms and diagnosis of lupus. lupusuk.org.uk/wp-content/u...

  • Thank you xx

  • Despite my earlier levity, Em, I do sincerely sympathise with you. T shirt, dvd etc.

    The most important piece of information I can give you is ALWAYS take someone into your appointment with you. Always. On here we have heard and experiencd some negative comments from rheumies. It is magical how they diminish with a witness.

    Second. If you want to ask questions, start with a piece of A4, and by the apt get it down to a shortish list of cue words. Most Consultants do not like reams of paper.

    Third, but really, 1, 1,1, 234567 READ. YOU CAN DOWNLOAD ALL THE INFO FROM THE LINKS ABOVE. Im sorry to say that we have to be our own advocates with our complicated diseases.

    You will find cross over symptoms, shared pains and aches and weird symptoms too. You have made a great start by listing them here. As you read you will be able to group them together in possibles, probables, and plain I've no ideas but you are not alone! We have ALL been through it. All of us... Some fortunate guys, great GP super Rheumy, fab quick diagnosis. Others bit slower and those who are really unlucky, it takes a long time.

    Remember, as you pointed out, not all blood tests are straight forward, yes or no. Other blood tests, the "normal range" is set too low, and will be negative, others use different laboratories so can not acurately compare like for like. Take your vitamin D level. In England, and Northern England we get too little sun. Low vitamin D results in Vitamin D deficiency. Has your GP tested you for it? If you are low you need a short intense course, followed by monthly top ups. I hope that that is why you are on a low dose. Its a top up dose. Am I right? It is a common Lupus discovery, along with other like diseases. All in all it is a lot to take in.

    Its 😡 damn frustrating all round.

    BUT if you are learning all you can about the disease, reading the posts here for information or posting questions big or small for expert advice and tips from our gurus, and the admin staff from Lupus UK, you can not be in a better place to feel more confident going into any appointment, with your person in tow.

    I feel for you but this can be a really empowering experience, once you get your head around it.

    You can do it. You are not alone.

    Come back with any more questions or queries any time.

    Welcome.

    Take care

    ⚽️

  • Thank you for your reply Hun.

    With my vitamin d I've had my intense course now I'm just on top up.

    I seem to pick up new symptoms every few weeks.

    I've noticed the redness on my cheeks I also get on my neck and chest but it's in blotches if you know what I mean.

    Also been burning up a lot recently even now it's cold to the point I have to sit down for few mins as feel like I'm going to pass out.

    And night sweats are becoming worse too.

    Oh the joys.

  • I am also in the same situation, I had to wait 8-12 weeks, I see my specialist on the 22nd... I have similar symptoms but also suffer from hair loss, weight loss, and a new symptom! Yay! Which is swelling near the ribs, under the armpit near the breast, muscles and joints are always tight. I'm just tired at this point. Looking and hoping for pain management, ask about that if you get "stiff" thanks for sharing. makes me feel less crazy.

  • Hi thank you for your reply.

    Have you been diagnosed with anything yet?

    I get achy pains and slight swelling under armpits and strangely at the back of my leg where my knee is this tends to happen at night time and wakes me up sometimes in the night.

    Your right all these strange symptoms does make you feel like your going crazy at times.

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