Can anyone help please : Ok so bear with me please... - LUPUS UK


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Can anyone help please

Babylove1111 profile image
24 Replies

Ok so bear with me please this is a long story. So for the past 2 years I've had the following symptoms which flare up and then I feel great and the they come back with a vengeance. Nocturnal back pain where I can barely move my back when I wake up at say 3am in the morning to go to the toilet, like pins and needles stabbing in my back. Severe fatigue, sweating, stiff joints and mild swelling. Dry eye in both eyes diagnosed by medical professional, aching in armpits, there are more symptoms but wont bor you. Then the other night had the most severe stabbing pains in the back of my head that I could not get rid of with painkillers. Kept me awake it was that bad, thought something was seriously wrong with my head it was that painful. Had an ana test taken by gp who said its negative as it's a very weak positive. Told him my awful new headache symptom which I had the other night and he just said just put some heat on it and all will be ok. The only next thing hes doing is an xray of my ankle to check for inflammation which I'm not holding much hope on enlightening this whole situation with any vital info on what on earth is going on with my body. Thanks for reading.

24 Replies
PMRpro profile image

Does the back pain improve once you get up and start moving about?

There are plenty of autoimmune disorders that won't show up in ANA - you need a rheumatologist, not a GP.

Babylove1111 profile image
Babylove1111 in reply to PMRpro

Thanks so much for your reply. Yes it does improve with movement. It literally ceases up throughout the night. When I want to change position in bed, I cant as I'm completely seized up in pain, i have to grit my teeth and count 123 move, almost bracing myself as I know it will be painful. Then there will be this lingering pain all night. Then when I get up in the morning, the pain is there but then improves once I'm up and about and has improved by mid morning then the cycle happens again. My gp wont refer me to a rheumatologist.

PMRpro profile image
PMRpro in reply to Babylove1111

Then you need to take someone with you and make a complaint, saying you want to be referred to a rheumatologist - you have all the signs of an inflammatory arthritis and one at least (the night time back pain that improves with mobilisation) that might point to something called ankylosing spondylitis (AS). The only way to diagnose if it is that or something else is to see a rheumatologist and have the right imaging done (a plain x-ray is often next to useless.)

Definitely DO see another GP though even that can be fraught if it is a very inward-looking GP practice where they stick together. Taking someone with you and asking (nicely) to take notes or record the conversation (so you can remember correctly what was said) does sometimes concentrate their minds! If you are short of an idea for xmas pressies - ask for someone to make donations for a private appointment with a rheumy. It is often the best £250 someone has spent when they have a silly GP.

It might be something else - but it is something and I doubt it is ovaries! And if it is, he should be investigating. Not everything shows up in blood tests. AS can start much later in life, especially in women - so he needn't say it is a disease found in young men so it can't be! Have you tried ibuprofen or Naproxen for the pain? That might be another sign it is an arthritis, especially AS.

It would be really helpful if you added a bit to your profile - age region where you live and what you've told us in this post for example. Then it is easy to find ...

Babylove1111 profile image

If anyone else can help, I'd be so grateful, so fed up of being in pain and my gp seems pretty unwilling really to put it politely, just ignores my awful night back pain and the other symptoms i mentioned in my first post and then starts going down a completely different path to do with OVARIES???? I never mentioned ovaries, it's so frustrating. Anyway, thanks in advance.

CecilyParsley profile image
CecilyParsley in reply to Babylove1111

Hi there, ovarian pain can cause severe back pain but if he suspects this he should be referring you to a gynaecologist so there seems to be no method to his deductions. I would definitely see another GP and get their perspective. If you are having such severe pain then there is a cause he just has not found it. Go prepared with bullet points of when it starts, how long it lasts, what exacerbates it, what eases it. Good luck, sadly it often takes a long time to get taken seriously with any autoimmune condition but persevere and do not take no for an answer xx

Makimon profile image

So sorry to hear you’re going through that and not being listened to by your GP. Unfortunately it can take many trips to the doctor before they will believe you/take you seriously although it shouldn’t be that way! I found keeping a diary of my symptoms helpful to show medical professionals and whatever you do don’t give up trying to get a diagnosis. See if they will refer you to a specialist doctor I.e a rheumatologist who can look into things further. Don’t give up trying to get an answer! Hope things improve for you soon x

Babylove1111 profile image

Thanks so much, symptom diary is a good idea. Maybe I should see a different gp, get a different view point.

Babylove1111 profile image

Oh ps. Does anyone know if you can ask gp for a print out of blood test results?

Jackpot67 profile image
Jackpot67 in reply to Babylove1111

Hi, I don't if your docs has online access eg book appoints, order prescriptions? Mine does and I also have access to all my consultations and blood results, maybe worth asking about. May also worth seeing a different GP with 'fresh eyes' to look over your notes and listen to your concerns. Good luck x

Insomniacette profile image

Hi Babylove1111

Yes! You are entitled to your entire medical file if you want! So you absolutely can get your blood test results. On getting a referral to a rheumy, you might want to consider politely just raising the question with your GP directly. "Dr X, I noticed you haven't referred me to a rheumatologist. I was wondering if you could walk me through your thinking on this". Politely make him explain his reasoning to you.

Good luck!!

miccika1 profile image

I would seriously monitor headache and go to a neurologist to help you. Those all look like neurological symptoms, and from what I understand they are not treated with heat.

😀.Your symptoms might not be autoimmune so keep an open mind. If I was you GP I would send you to a neurologist first considering your ANA was unremarkable.

Babylove1111 profile image

Thank you so much everyone for your support and advice. The other thing I've been getting is quite painful heel pain, maybe I've been walking weirdly due to my back pain.

Piscesdreamer profile image

Hello, A positive ANA blood test should be followed up with a full autoimmune blood panel. I recommend seeing a rhuemetologist. Sorry you are living in pain, I hope you get your diagnosis and treatment soon ♡

BeeManShrop profile image

Hello The pain in your heel could be Plantar Faciitis caused by fallen arches not necessarily anything to do with your other symptoms. I have had it and it is definitely painful. The solution, (recommended by a physio) for me was shoe inserts as the following link -- they are excellent, I now have them in all my shoes including slippers. Best fiver I ever spent. Hope this helps. Good LuckPS -- Re GP problem -- claim you need to see a woman doctor -- you won't have to say why.

OR search for Pro 11 Arch Support

Babylove1111 profile image

Piscesdreamer, thanks but cos my result is 1:80 then he said it doesn't need following up. His words were a rheumatologist wouldn't be interested in a referral with those numbers. Might have to take beemanshrops advice and see a woman gp. Thanks for the shoe advice too!

Roarah profile image

How old is your mattress? A high quality new mattress is life changing at times.

Supul profile image

Hi, Sorry you are not getting help from GP. Most members suffer such frustrating GP appointments time to time. Definitely prior to diagnosis, so do persevere.I have gone to A/E a couple of times before diagnosis if I was so unwell and needing help.

If I remember correctly my ANA was the same as yours at first. I got the blood test via a dermatologist I saw due to a severe swelling and bacterial infection that suddenly appeared on my ankle. I had visited GP about 4 times, with an extremely itchy ankle. She gave me different topical creams each visit.

I did not feel listened to until I had to visit A/E when my ankle 'exploded' with pus oozing..

The A/E staff were brilliant. I had antibiotics prescribed and returned for 3 days dressing changes to wounds..

I was advised to see my GP I was hesitant.. she took one look at my ankle and pushed an emergency appointment with dermatologist.

There began blood tests, referral to allergy testing and rheumatology.

I was very quickly diagnosed with Sjogrens Syndrome ?Lupus.

I suffer the severe head pain too. Actually, heat does help me. I place my head on a hot water bottle. It does ease the pain..

Nowadays, I suffer a type of 'explosion' zap in my head. Very frightening.. I researched this symptom. It does exist. Appears nothing advised to help. I put up with, it remembering GP wasn't so interested until there was a visual symptom...

All of these autoimmune symptoms can be hard to bear.. somehow the longer we have them... we do find our own ways of coping tho we don't feel alone on this site, members help, advise, listen... and when things get tough we are so thankful for one another...

Please don't despair, you will find your way to get the medical help you need good luck x

Babylove1111 profile image
Babylove1111 in reply to Supul

Oh my god, my symptoms are so similar to yours, it's uncanny. The headache I had the other night was like electric shocks going through the left side bottom of my skull area with flashing lights, I told my gp about this and he just shrugged me off, I couldn't even rest on that part of my head as it caused it to shock even more. I thought at one stage I was going to have to go to A&E as it was so severe. My left ankle swells up too and gets really itchy to the point where it scabs, it's that itchy. My gp has booked me an X-ray on this ankle oh the 9th Dec, not quite sure what that will prove to be honest. I'm losing faith and feel there's no answer to this.

Supul profile image
Supul in reply to Babylove1111

Horrible symptoms aren't they? I think the most frightening for me is the explosive type head attacks. They come out of the blue. Mostly at night and wake me up. Sometimes during the day especially if I'm really exhausted.

I'm probably not good at pacing myself so get over tired utterly fatigued and must admit I haven't kept a diary to note if trigger patterns. This is something I will do since you opened this topic.

I did forget during early investigators - well later than I would have liked! I did see a neurologist who diagnosed cluster type migraine. He was very kind and offered ongoing service. However, one would have to get referred back to him via the GP each time I felt the need. As I explained I don't feel my concern is taken seriously if it's an invisible symptom. My goodness, GP has delegated a lot of the workload to the nurses. I did visit one time with an awful infection. The nurse looked at me saying well what part of your body is it this time?! I felt humiliated despite being called for antibiotics next day following a swab result showing a severe infection. Unfortunately, I learned to put up and shut up mostly. I study. I go to support groups and to HU for help and advice only going to GP or nurse if think I need antibiotics.

Anyway, the neurologist prescribed amitriptyline for my head pain, which may well work for many, though for me I experienced hallucinations so stopped taking them. What I would say is, amitriptyline is supposed to help with sleep and is an antidepressant which can be useful for nerve pain. So, may be worth a trial if you get it offered to you.

I've learned the hard way trying to get quality sleep should be something we do aim for.

Even after six years diagnosed I still probably make a mistake trying to be living as if I do not have autoimmune disease. Of course, my reserves get depleted and I flare again... one of the challenges of autoimmune disease is knowing what we feel whilst acknowledging that friends and family will still have expectations beyond us purely because we suffer invisible illness.. as I say, if we don't listen to and respect our symptoms, slow down, rest, we will eventually be brought down.. pace yourself. Wishing you every best outcome.. you have been given excellent resource advice from Chanpreet.. time to start reading .. xx

Chanpreet_Walia profile image

Hi Babylove1111,

Welcome to the LUPUS UK HealthUnlocked community, we offer a free information pack which you can request at

I'm sorry to hear you've been experiencing all these symptoms and are unsatisfied with your GP's performance. Have you thought about getting a referral to see a different doctor? To learn how to change your doctor and get the most from your medical appointments read our blog article at

Extreme fatigue, joint aches and pains and dry eyes are all symptoms associated with lupus. We offer a range of factsheets and booklets on lupus, symptoms and associated conditions which you may find helpful to read at

An ANA test only confirms whether or not a person has an autoimmune disorder, it does not confirm if a person has lupus. dsDNA antibodies are very specific for lupus. Learn about the tests and criteria that need to be met to make a diagnosis of lupus at

Headaches and migraines are common health conditions that can occur in a number of ways and can have a wide range of causes. People who have lupus have an increased chance of having headaches compared to the rest of the population, occurring in up to 72% of SLE patients. Learn more about lupus and headaches at

Please keep us updated.

Best wishes,


Babylove1111 profile image

I've managed to get hold of my blood test results and posted a picture.

Babylove1111 profile image

Picture should be at the top attached to my initial post. Not sure what it all means.

Babylove1111 profile image

Thank you Chanpreet and Supul for you advice and support.

Supul profile image
Supul in reply to Babylove1111

Sorry - I was writing you a long reply saying you are more than welcome. Also saying I did have specific ro antigens the other symptoms lead to my diagnosis Sjogrens query lupus..We have been there it's unpleasant trying to make sense of autoimmune illness when it strikes.. sadly, my longish reply seems to have been 'pulled' my computer just switched off!!! Never had that before. So, I will leave you to read as advisor instructions and wish you well.

My intention is only ever to offer help to suffering individuals. Good luck. Xx

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