Stabbing pain in ribs & negative ANA

[Bee2023]

I have not been diagnosed yet and have recently been given an urgent referral to The Royal Free. I have been having flare ups for the past 10 years but they are getting more frequent and worse. My GP has sent me to A&E 3 times.

Does anyone get shooting stabbing pain in their ribs and sternum? It feels like someone stabbing a knife into me and takes my breath away. Sometimes it happens in other places like my shoulders, hips, spine and once the top of my skull. It’s usually in the left side of my ribs which is left feeling tender.

It keeps me awake at night or if I do get to sleep it happens and wakes me up. I have had chest X-rays and ultra sounds which are clear.

The CT scan last week showed an 8mm opaque something on my right lung which they are going to monitor. The pain I was having was on the opposite side of my chest. When I am unwell my chest feels squashed like someone is sitting on it and I am completely and utterly exhausted. After a few weeks of feeling completely dreadful it passes and I don’t get the stabbing pain anymore and I am left feeling exhausted.

I’ve seen 4 Rheumatologists and am about to see a 5th in April. They are all baffled. Sometimes I have positive ANA and Ro but other times my ANA is negative.

My blood results show that my white blood count plummets, my clotting goes wrong and my blood pressure plummets. This last flare up I also got warning stage AKI blood results and protein in my urine.

I have had Raynaud’s for years and have had finger ulcers twice needing antibiotics because they were infected. My fingers swell like fat pea pods and I can’t use them. Hand scans showed it is subcutaneous oedema.

I don’t have rheumatoid arthritis as there is no inflammation in my joints. (That is what the hand scans showed).

I’ve had tummy troubles for years and test showed I have inflammation of my gut so I don’t eat dairy or gluten. I’ve lost weight even though I eat more than my husband. I’ve had electric prickles all up my back. Blurry vision. Double vision for 40mins which was very scary. My hair falls out everywhere, I have dark skin patches which they thought were morphea but they’ve done 3 biopsies and they were negative.

I feel like I’m on a roller coaster. I’m hoping the doctor at the Royal Free will help me. 🤞 I’ve noticed that the last 3 flares I’ve had have been when my family were all ill with Covid or high temp bugs which I did not catch but I became very unwell. I wondered if my immune system goes into over drive.

I was on Hydroxychloroquine for 10 months but my latest consultant stopped it because she thought it was the wrong drug. I did not have any big flare ups while I was on it.

Do other people get negative ANA sometimes?

Do you get shooting stabbing pain which does not show up anything on scans/ x-rays?

[OldTed60]

hi there. That all sounds most heavy duty for you to have to live with - confounding too when even your doctors are out of their depth. I recognise some of it and have confounded my own many rheumatologists and others over the years too but not quite as badly as was already autoimmune and menopausal when diagnosed with CTD, poly arthritis then RA, then changed to Sjogrens. Now have SSc antibody (two from same panel which is a bit confusing). But not definitive symptoms of SSc apart from Raynaud’s and severe gut. My ANA has been negative at first although already had positive RF and only methotrexate, then equivocal then very positive with negative RF - now steady weak positive 1:80 always with same high titre rare SSc antibody and another one equivocal points specifically to limitedSSc - but only evolving slowly in my skin. I’m Scottish but travelling to see the expert at royal free in July for one off consultation and overview.

I get bad lower rib pain - ‘specially now following falls with a couple of broke ribs on each side at different times. One right rib pops out if I bend down far. Lungs 3 years ago showed very early signs of fibrotic changes but seem clear now I’m on 3g Cellcept. Echo was okay last year but mentioned new symptom very random loud pulsating tinnitus a few times and they were baffled as me. Anti Ro is sjogrens far as I know often a very underestimated systemic autoimmune as can cause ILD, renal and other stuff so maybe worth asking about too when you’re at Royal Free. Sometimes antibodies take a long time to reveal themselves properly I’ve found. My rheumatologist is baffled by mine as first patient they have found with them here but some of us like to elude boxes. Sounds like you are one of these too?

[Bee2023 in reply to OldTed60]

Thank you so much for taking the time to reply to me OldTed. Good luck with your July appointment. I hope it goes well. 😊

[arisaig22]

Hi. I'm not able to speak to your entire history due to pain in fingers today, but wanted to say I've had over a decade of not being diagnosed/ misdiagnosed. I have similar sharp pain. Despite seeing a scleroderma/ systemic sclerosis specialist locally I had a private consultation with the Royal Free Prof privately a few months ago as I have been certain I had systemic sclerosis for years. He clearly diagnosed me and via my GP provided advice to my specialist re treatment plan. Also advised me to take specific supplements which have helped. You will be in the best hands at the Royal Free- a world renowned centre for research. Good luck.

[arisaig22]

Forgot to say, I too do not have the autoantibodies fir systemic sclerosis- yet. Walks like a duck, quacks like a duck.....

[Bee2023]

Thank you for your reply. I’m sorry to hear your hands are painful today 😔 I hope they feel better very soon.

I’m glad you were able to get a diagnosis and a treatment plan.

2 GP’s & the dermatologist thought it was. It’s my consultant who doesn’t think it is because my ANA is sometimes negative and she wants all the boxes ticked.

Will see what they say at my appointment in April. I’m keeping everything crossed they can help me.

[Barnwell]

Hello Bee2023.

That all sounds really tough. I had a similar experience of multiple and worsening symptoms for many years before limited SSc was finally confirmed.

Like you I experienced incredibly debilitating stabbing pains all around my torso for years. I have discussed it with many doctors and no one could explain the pains or identify a cause.

Since diagnosis with LSSc the stabbing pains have almost stopped. I don’t know why this is - whether it’s improved mental state/better stress management, or something to do with vasodilation (regular meds and Iloprost infusions) or a combination - but it is a huge relief. I realise that we’re all different but sometimes things can improve so don’t give up hope.

You will be in the best possible hands at the Royal Free and hopefully they will be able to help. Good luck. ☺️

[Bee2023]

Thank you for your reply Barnwell. I am so pleased to hear that your stabbing pains have stopped. That is great news. 😊