Is it Lupus or all in my mind?: For the last... - LUPUS UK


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Is it Lupus or all in my mind?

Claireb5 profile image

For the last 6 months I have felt increasingly weak and tired. I already have type 2 diabetes and I am hypothyroid. On researching my symptoms I suspect Lupus, mainly due to the extreme tiredness, muscle pain and weakness and the red rash across my face. I thought at first I was just imagining things but eventually decided to see my GP. He has agreed to test for lupus but doesn't think it is given my symptoms could be due to so many other things. My blood tests are scheduled for wed but in the last two weeks I've had to spend at least 2 full days in bed ( 2 separate occasions) because I'm utterly exhausted and my arms and legs are aching - especially my legs. I've had to take the day off work and when explaining how I feel to my boss and even my friends I think it sounds like an excuse to be lazy. Does anyone else feel like this?

11 Replies

It sounds like it could be Lupus. Thyroid can cause the tiredness and painful joints but they say the rash across nose and cheeks is a big Lupus symptom.

Dear Claire

Your not alone and I've a similar scenario with a couple of differences.

Like you my issues started about 6 months ago. I don't have Diabetes or Hypothyroidism either, but I am a cancer survivor which we believe was the trigger for whatever this is.

On his own my GP went and sort a second opinion from another more senior GP, and both believe that I have Lupus. As a cancer survivor I've regular Oncologist follow up's and tests which wouldn't ordinarily be done via a GP. My Oncologists believe the same as the two GP's.

That's 3 medical professionals who all suspect that I have Lupus, with one very important fact which I will now add. Before anyone would give me an answer to what they thought it could be, I was given an ANA Lupus test which came back negative. It was then my GP started to say that he suspects that I have Lupus and that I may even be Seronegative.

I too have the face rash, and the symptoms you have described. However I also have a lot more issues, especially with the last flare. The fatigue wont shift, I've experienced extreme memory issues and difficulties in speech. All over body pain and yes the mirrored symptoms of both arms and legs where muscles scorched and joints felt incredibly painful.

The one test which had stood out was the LDH test, a GP wouldn't ordinarily ask for one. (so says my GP) but it just so happened that in between GP and Oncologist follow ups I had a routine cancer screen including LDH markers.

LDH detects any inflammation which is going on in your body. Mine were through the roof, and all the other cancer markers were normal. This proved medically that an inflammation was happening and that it wasn't mentally fabricated.

Further more, a recent CT scan shows enlarged lymph nodes around the lungs and lung scaring. but its not cancer at least.

From what you are saying I'd ask your GP for a simple LDH marker test. That will prove to him/her that you have an inflammation at least and its not fabricated.

As for me, I am currently battling the red tape and hope to see a specialist Lupus Rheumatologist who will help me.

The more I read into Lupus the more I can see that its a very good match for what is going on with me. One thing to remember is the key message which is written virtually everywhere. Is that Lupus effects people differently. But yes I am like you to a degree.

Hope this helps


Claireb5 profile image
Claireb5 in reply to Andy-1978

Thanks Andy. My GP did mention that the tests he has arranged would look at imflammation markers so hopefully it will include those mentioned. Will keep you posted once I get the results :)

Andy-1978 profile image
Andy-1978 in reply to Claireb5

Your welcome Claire and glad that your GP will be checking your markers.

my GP is fantastic but even he admitted that he wouldnt have done the test. But then it may have just been that the oncologists got there first.

Hope it works out for you.

Don't leave it to your GP - insist on a referral to a rheumatologist. In fact, if you have had these symptoms for 6 months already he should already have had that on the "to do" list. You already have a likely autoimmune history in the thyroid problem (not the Type 2 diabetes) so you are at a higher risk of developing another.

Paul_Howard profile image

Hi Claireb5,

I hope that your blood tests will help to provide some answers and push towards a diagnosis. As PMRpro has suggested, you may want to ask for a referral to a rheumatologist after you have received the test results. They specialise in autoimmune and musculoskeletal conditions so will have more experience to diagnose and treat conditions like lupus.

If you need more information about lupus you can request or download a free info pack from our website at

Claire, I have lupus and those are 3 of my main symptoms. Does the rash across your face get hot and burn? I agree I would ask to see a rheumatologist when ypu get your blood work. I have other symptoms now like a sore tongue and mouth as ND my scalp will start itching and I get hair loss when that happens.

I will say the exhaustin from a lupus rashould is something that is hard to explain but you are tired and my body feels like wet sand bags when it flares, it is to hard to even lift your arm and the pain it a deep aching that almost feels like it is your bones. Sounds familiar?

Sounds very familiar! My rash comes and goes but can feel like it's on fire when it's really red. The pain in my arms and legs kind of feels like I've been walking for miles and using weights with a kind of burning sensation. Part of me wants the tests to be negative as I don't want another illness to deal with but the other part wants confirmation so that I know I'm not just imagining it.

Hi, oh yes, I feel exactly the same. My legs never stop aching but first thing in the a.m. is the worst. I can't get out of bed some days and head straight for my pain killers when I can. I'm as tired in the a.m. as I am when I go to bed. I have no rash but all the other symptoms including losing my hair. Just remember you have to be your own advocate as a patient, especially if you're on your own. Good luck.

Its not in your head. Been told that by family for years.

Finally got help today, not wanting to complain as im used to being told not to...

Was dx immediately. Don't let ppl make you think ur crazy or anything!!

Believe in your gut,if something's not feeling or looking rt,it probaly isn't.


So got my blood results, blood count, iron levels, b12, and inflammation markers all normal. My TSH levels are elevated which means I'm not getting enough thyroid hormones so need to increase my meds - this could be causing my symptoms. ANA test came back with a weak positive but on its own is not enough to tell if I have Lupus. The main test results - Anti-DNA haven't come back yet. The Dr phoned the lab when I was in but they said it's a 3 week lead time so I need to go back in two weeks

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