At a loss at the moment.

[MsAndyIvy]

Just wondering where to start.

For the last 6 weeks I just haven’t been myself. Was originally told post viral fatigue following suspected glandular fever.

Doctor has suggested lupus which has been mentioned a few years ago. My current symptoms are:

Fatigue which gets worse after exertion.

Pain in feet and hands particularly, but I get random severe stabbing pains that can be anywhere

Really bad buzzing in my head- like tinnitus but worse.

Aches in joints.

Muscle spasms.

Feelings of being spaced out and not mentally alert. I can fond myself sitting for minutes at a time unable to focus.

Headaches.

Clumsiness.

Memory loss.

Don’t like sunlight.

Random temperatures particularly at night but at any time really.

Glandular swelling.

Depression.

I sound like a real sick note. I’m generally fairly high performing and full of energy. Though over the years I have had many instances of undiagnosed pain both in my limbs and internally, kidney stones, goitre meaning 2/3rds of Thyroid removes and hypothyroidism.

My sister has lupus. But only got diagnosis after kidney biopsy.

I’d just like some reassurance and any advice please!

Thanks

[Hidden]

Hi - sorry you’ve had a bad six weeks. It can take some of us years to get the right diagnosis.

After a lifetime of undiagnosed autoimmunity eg alopecia areata, rashes, allergies and severe eczema - I was diagnosed as Hypothyroid at 39/40.

Then at 47 I was diagnosed and aggressively treated for RA in 2011. Then, last year, after battling with mild secondary Sjögren’s and Raynaud’s and severe neuro symptoms I was rediagnosed, by lip biopsy and high ANA, with primary Sjögren’s.

As there is a lot of crossover between Lupus and Sjögren’s and you also have glandular symptoms -it would be worth looking into primary Sjögren’s as well as Lupus and RA. If you haven’t already I would request that your GP takes a full blood count, inflammatory markers and your autoantibodies - or at least your ANA and RF (fingers too numb to write in full but easy to look up). Whether or not these come back elevated, it is worth requesting a referral to a rheumatologist.

[MsAndyIvy in reply to Hidden]

Thanks Twitchytoes!

I'm 48 and have been struggling for ages then just feel worse than I ever had.

Right..I'm off googling Sjogrens, no idea what that is. Blood tests early next week. I will ensure that Dr does those tests.

I will chase up that Rheumatologist appointment too, even if okay.

Take care

[whisperit]

Hello MsAndyIvy

Just in case you haven't seen them yet, you might want to check out the LupusUK leaflets on the "home" page here. The one on symptoms and diagnosis may be particularly handy.

lupusuk.org.uk/wp-content/u...

x

[MsAndyIvy in reply to whisperit]

Yes they’re great!

[BillScotland]

I was diagnosed with severe pulmonary hypertension after a suspected heart attack (50 years old). I had been suffering from multiple health issues for years including infections, headaches, pains in my extremities, fatigue, sensitivity to light. LFT's showing high albumin, protein and blood showing +++ in urine but it took a liver biopsy to confirm Lupus

[MsAndyIvy in reply to BillScotland]

Thanks Billscotland. Any insights are really useful. As I sad i’m ‘At a loss’ and basically bloody fed up or not being me!

[Paul_Howard Partner LUPUS UK]

Hi MsAndyIvy ,

I'm glad to see that you've already had some really helpful and supportive comments from members of the community. Good luck with your blood tests. I hope that you are able to get some answers for what is causing your symptoms. Hidden suggestion of requesting a referral to a rheumatologist is really good advice.

We have a blog article about getting diagnosis of lupus which you may find helpful. You can read it at lupusuk.org.uk/getting-diag...