LUPUS UK

Feeling dreadful-no one listening

Hi, i was diagnosed with severe me.cfs five years ago and have been housebound since then. Last year i was also diagnosed with fibromyalgia (not sure if i agree) and Connective Tissue disease. Ive been on hydroxychloroquine for two years but it doesnt seem to have made a difference to my symptoms.

I have a new symptom and wondered if it sounds familiar to anyone. When i overdo things - which can be as simple as a telephone call or making the dinner- i start to get a very dry mouth and lips and very dry eyes. I also have a burning, tingling mouth, tongue and gums, inside of nose, ears and eyeballs. It feels a bit like everything is burning and when i breathe through my nose the air feels freezing cold. If i open my eyes wide i can feel the air against my eyes and it feels as though im in the arctic! My nostrils feel very open as if they are so dry that i can feel the air as i breathe. I have the same burning/tingling over the whole of my body. The neuro says its all in my head and wants me to see a psychologist! But i wonder if it is a symptom of Sjogrens maybe?

I cant seem to get anyone to understand how ill i feel.

Any ideas?

Kate

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Hi Kate16,

We're not medically qualified here so we couldn't say whether this could be Sjogren's syndrome or not, but you may wish to ask your consultant to test for you and offer any therapies to help alleviate these symptoms.

You can learn more about Sjogren's at nhs.uk/conditions/sjogrens-...

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Hi Paul,

Thanks very much for the nhs link.

I am seeing my rheumatologist again in May so will ask her then. I just wondered, in the mean time, if anyone else had similar symptoms.

Best wishes Kate

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~Sorry, just seen this. You are under the care of a rheumy!

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Hi Kate. I'm sorry you are going through all this and feeling so 'alone' with it all. I was originally diagnosed with ME over 12 years ago, although very little testing was done to rule out other things, and then I was basically left to get on with things. It was a dreadful time.

Then a few years back I was finally referred to a rheumatologist and I discovered that I have SLE and also Antiphospholipid Syndrome, as well as other things, including a form of dysautonomia (which you may be aware of - there is now quite a bit of interest in whether at least some of ME's symptoms may be due to forms of dysautonomia). However, all these diagnoses aside, I would say that I do also have something that falls somewhere under the ME/Fibromyalgia banner, and am around the moderately affected level.

I don't have the precise symptoms you describe, but I do - periodically - experience some very odd, unexplained things. Particularly if I overexert myself; again, this can be by doing what for healthy people would be everyday activities. But my other, currently explainable symptoms, may also worsen. So, whilst I can't comment on whether your symptoms might be Sjorgrens, it doesn't surprise me that the symptoms you mention are worsened/brought on by over exertion. Are you under the care of a rheumatologist? They would be the obvious person to bring this up with and ask for testing. If you do have something 'recognisable' and treatable (or partly so), then it is worth pursuing.

Good wishes.

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Hi kate.....I too was told I had M.E about 11 years ago after being really ill on holiday in egypt and never really recovering......anyway after years of struggling on I went to the doctors in total desperation and asked for more invrstigation....to cut a long story short they found issues with bloods etc and referred me to rheumatologist. I have now been diagnosed with SLE and Fibromyalgi. What I did want to say though is I too suffer with a reslky sore throat and my glands enlarge if i do too much....i also have the painful nose you talk about and it feels dry and irritated all the time...my eyes are also extremely dry and at the minute im on antibiotics for 3 months as they keep getting infected due to dryness. I have not had a diagnosis of Sjorgrens but my eye specialist has wrote to the rheumatologist to see if this can be investigated. Anyway after all of that the advice that I give you is dont give up, nobody knows your body like you do and how you are feeling....doctors are very good at putting us into a diagnosis box and not thinking outside of that. I know you probably despair and dont have the energy but keep pushing because after 11 years im finally getting some answers for why i feel so bad. Big hugs x

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