Sick and tired of feeling sick and tired 😓

[Bahmum]

Hi all I’ve never posted before but really wanted some advice - I know no one here is a doctor but I really appreciate your opinions.

I think that I may have lupus but despite having a positive ANA and P-ANCA the GP told me the results were TOO WEAKLY positive to be a concern despite me being symptomatic and was dismissive of a referral or any further testing or a referral. In fact he suggested we may need to look at “how I think about things” which made me feel like I was going crazy.

On a daily basis I am exhausted, nauseated, feel flu-ish and fogged if that makes sense and often have severe one sided headaches (but not the typical migraine attacks that I suffer from). I get pins and needles and burning sensations in my hands and feet on and off through out the day. I get random fevers that come and go without reason and I have no temperature tolerance AT ALL. If I go out in the sun I come out in hives on my arms and back (not prickly heat actual hives) within minutes. All my lower joints click and my back and knees although they don’t swell are extremely painful. My heels swell and become impossible to walk on at random. And I can’t do anything with my hands that involves prolonged gripping or pressure as I get severe pain in my thumbs. I have been told I have Raynaud’s as I get a strange pin prick red rash under the skin in my fingers that feels like tiny shards of glass that then blisters and peels but it happens anytime of the year without the fingers going blue or white. Sometimes I get a circular red rash on the tops of my arms and across my back and faintly on my cheeks but it comes and goes so is not consistent. I get a lot of random sharp chest pain and my kidney results came back as “below the normal”.

In addition to this there is a family history of autoimmune illness in my family as my mum has psoriatic arthritis and Hughes syndrome.

I guess I’m just not sure where to go from here and feel disheartened. This is seriously affecting my life but I don’t feel the GP believes me.

Does this sound like Lupus to you?

[AgedCrone]

You will have to stand up to your GP & insist on a referral to a rheumatologist.

I can't comment on whether the symlptoms you quote might be Lupus,, but they certainly need a second opinion....& further investigation.

[Fennella02]

Your symptoms sound as though they could point to a number of AI conditions and certainly need further investigation. You will need to push hard for that referral as we don't all produce the textbook range of antibodies and some conditions don't show in the blood tests at all. Be prepared for a fight and do whatever it takes to get their attention. Photos and a symptom diary are useful evidence to keep. Referrals cost GP practices money so they aren't always very generous with them.

[whisperit]

It's impossible to tell from this distance but you definitely deserve a better response. have you seen the LupusUK leaflet on symptoms and diagnosis? lupusuk.org.uk/wp-content/u...

It might be a useful guide for you to structure another discussion with your GP? Lus or not, you should feel that your concerns have been listened to and your doctor has satisfied you that s/he is coming to the correct conclusions. If they can't do that, then do seek another opinion. Good luck x

[Kerrclan]

Hello, what you are feeling is exactly how we all feel before our diagnosis. The Chronic symptoms you describe and continue to experience need to be assessed by a specialist consultant Rheumatologist to run further tests. I had to endure years of similar symptoms in order to get a referral to a specialist which delays vital treatment. My mental health definitely deteriorated during this time. You literally feel as if you are losing your mind. Please have a look at Lupus UK website where you will find great advice on how to prepare for referral to Rheumatologist from GP. Also have a look at Lupus UK skin care in the sun. No matter what the final diagnosis will be the symptom treatments are generally the same Be assertive. Make an appointment today and perhaps consider a different GP at your practice.

Good Luck

[leslieliesel]

Well...I was DX'd a nearly a year ago because of a very BAD rash from the sun..hands arms chest back...I was dead dog tired and my joints and mostly small joints hands feet elbows hurt like the dickens....I have felt crummy for a long time... like a mild flu with no fever...I didn't bother telling my dr how I was feeling...because it was vague...the rash got the dr to pay attention..Blood work came back HIGH ANA 1:1280 homogeneus(sp) pattern....biopsy came back discoid lupus....more testing...so, keep at it Bahmum and if you have a rash insist on a biopsy... my dx is subacute(sp) Lupus(skin joints and Fatigue) yet for YEARS my kidney function has also been low....My Best

[Paul_Howard Partner LUPUS UK]

Hi Bahmum ,

You've had plenty of excellent responses from other members of this community already. I would agree with the sentiment from many of the other members. We can't say whether you may have an autoimmune condition like lupus or not, but I would suggest that ideally you do need to be seen by a rheumatologist and so need to get a referral. It may be that you need to try seeing a different GP if you feel your current one is dismissive of your symptoms.

You can read more about changing GP and read other advice for getting a diagnosis of lupus in our article here - lupusuk.org.uk/getting-diag...

[Bahmum]

Sorry for the long time to reply this week has not been a good one 🙁

Thank you all for your responses and taking the time!

I followed your advice and did go back and see another gp who was much more understanding. I’m now waiting on the results of further blood etc tests and have a chest X-ray next week. So although I’m not hoping they are positive I’m at least hoping for some answers.

I hope you are all feeling as well as you can xxx