Advice please - new on here

Hi,

I hope you may be able to help advise me. I started with agonising right-sided chest pain (suspected pleurisy) after an ear infection back in March this year, which then quickly moved to both sides. This was sharp sudden pangs of stinging, stabbing, itching and vibrations at both sides of my chest and my sides and my back and has continued for months. It feels like someone is stabbing me unexpectedly and I have uncontrollable chest wall spasms. My Dr suspected arthritis and in May my anti CCP came back mild/moderate but the NHS Rheumy was dismissive and I've since seen a private rheumy who suspected early RA but then referred me on again. In May I started with sharp intense stinging and hammering finger pains and toes, followed by my hips and my knees.I've had lots of blood tests done again at rheumatology clinic but currently all normal/negative (including CCP) and including inflammatory markers. I'm in daily chest and widespread stabbing pain and struggling to function and sleep with this and worry. I've paid privately to be seen by a respiratory specialist but have to wait a while for a NHS scan. I'm looking into private MRI as I'm really scared at what's happening. Does anyone have advice on what imaging tests I should be asking for/whether A&E would be worth a visit as the pain just gets too much for me to cope with at times and I don't know how much longer I can cope without treatment I need. Thank you so much.

41 Replies

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  • Bumping just in case anyone can help?

  • Being seronegative or swapping around between weak positives and negative again seems to be a major stumbling block to a timely diagnosis or confirmation that it isn't an inflammatory arthropathy.

    I've never heard of someone presenting with pleurisy like symptoms at the onset but I've relatively little exposure to people with inflammatory arthritis. I'm assuming you have been assessed for a viral arthritis - or it's expected that its impact would persist in your blood test results?

    MRI scans are relatively affordable in some places. It might be worth checking out how much they'd cost in the UK v. (say) Lille. But, you'd need some expert advice on the scans that might be worth doing.

    If you suspect inflammation that is not showing up in your bloodwork, nor do you have obvious swelling, then it might be useful to request an ultrasound of (say) your hands or feet (can show otherwise concealed inflammation).

  • Thank you. It is really difficult as I have so many symptoms, including sharp sudden onset chest, back, hand pain and hand cramping/tightening. My ESR went up to 9 in May but went down to 2, so there have been differences but they're still in the normal range.

    I'm looking into private MRIs it's just I'm not sure my doctor even would know what is what. No one has investigated viral arthritis, so I'll mention this next week at my rheumatology appointment. My hand and foot pain started about two weeks after a bad bout of diarrhoea. But my hand has drawn up in sudden cramp like pain on and off for a few years - I'm not sure if that's related. I've asked for an ultrasound at my next visit. I do know I have mild greyscale synovial hypertrophy in my first and second toes. Just feel the medics are doing nothing and I'm left untreated in pain 😥

  • I'm never one to recommend going to A&E for ongoing problems but you shouldn't be living with undiagnosed uncontrollable pain so I think it could be justifiable in your case. I am sero negative but have had lupus/uctd for so many years despite this. My inflammatory markers were almost always normal too, nowadays they're trending higher for longer (ESR is normally 5 - 11 but now hovers around 50+).

    I went privately to see a respiratory consultant like you and then transferred to the NHS for tests but he forgot to request them so I politely waited months before questioning the silence. He did tell me that MRI doesn't show as much as a CT for respiratory things so you could save your money on that one.

    Ask for a second Rheumatology opinion and pursue the respiratory tests - the latter may yield lots of clues. X

  • Hi Clareb67, thank you very much. I've had so many sleepless nights and was thinking out of desperation A&E may just run the tests to help me. Do you mind me asking what your initial symptoms were as I do think I have a lot (if not most) of the symptoms of lupus (including pleurisy like pain) but my ANA was negative? I have a CT scan booked, like you I went to see a private respiratory specialist and he's referred me on the NHS. I think I may pay privately for an MRI before that in case, as I have had six months pain now and all the GP seems bothered about is my anxiety levels.

    If I don't get any help next week I am going to have to get a second opinion as I can't go on like this. X

  • Ok, well I'm 50 now but the joint pain started following septic shock when I was just 23. My fatigue, malaise, pain and swelling would fluctuate madly and, as I was petrified of hospitals, I self diagnosed with RA and bashed on. My finger & hand joints started to hurt and swell with redness, sometimes for weeks on end. I could be crippled with swollen knees at 8 am then walking normally by the afternoon, possibly the same again the next day or maybe not! I would also have bizarre little blisters with black centres that appeared from nowhere. My consultant diagnosed me based largely on textbook clinical presentation back in 2001 and low wbc plus low complement. My dx has been questioned since and reconfirmed by a highly regarded Prof of rheumatology. Since 2012, I get bouts of chest pain - most likely pleuritic and have small airways disease caused by the flares. Plus respiratory weakness. The immune system is vast and complex. We're all expected to fit into the limited amount of diagnosis boxes but there's so much overlap that some of us just don't. I didn't have to pursue diagnosis but most do. Rheumatology seems to be struggling more than most specialities to keep its head above water so you must be prepared to be your own warrior. It won't be quick, that I promise you but there is a reason for your symptoms and you will find it. Hang in there!

  • Sorry to hear you've had symptoms for so long. Oddly enough, I just counted back and I was 23 when I started with my joint pains too, diagnosed as fibromyalgia. Have had odd pains on and off over the years since then but like you, have a phobia and am petrified of hospitals. It's only this year that my pleurisy types chest pains have really flared so badly, following an ear/sinus infection. I get a wheezy feeling in my throat too quite often. I guess I just need to ask all the questions of the rheumatology team next week. It's just knowing what questions to ask. Which blood tests/scans are needed. Feel like it's been a nightmare - I've read up about everything and it's terrifying. x

  • With your lupus how did they differentiate it from RA as many symptoms can be similar? Was it textbook presentation or do you have both together? X

  • Textbook plus no joint erosion despite repeated joint flares. I just asked them for X-rays plus anti ccp & RF at Xmas 2016 to rule out Palindromic Rheumatism - all normal.

    You need to shop around for a rheumatologist who is open to diagnosing without antibodies but it is effective treatment that is more important than the label.

  • I see. So your joint pain is thought to be part of lupus but not erosive? So it seems the joint erosion is key. Plus the markers. I haven't had x-rays of my hands and feet so may ask for those too. I agree the treatment needs to be effective as the pain needs to be kept under control even if they can't find inflammation in the blood tests. I'll be asking lots of questions next week. x

  • Ps. Sometimes doctors use a trial of short term prednisolone to determine if the pain is inflammatory.

  • Thank you - I'll ask if they can try that to see if it helps. Interestingly I find that ibuprofen triggers my pain more and I get a bit wheezy. I heard that it's not receommended in lupus? x

  • How did you get the diagnosis with being seronegative, was it through the respiratory scans or second opinion etc? Thank you. X

  • One of the difficulties seems to be that once you're not in the commonest categories of inflammatory arthritis, it's difficult to learn which tests are appropriate for the less common ones (there are reportedly >100 inflammatory arthropathies tho' I've no idea if the differences have substantial implications for treatment so are more interesting than clinically relevant, IYSWIM).

  • That's the challenge - I just wonder if there are other blood tests that they should be running. I know there are standard tests which they do but surely there are many others too. It's knowing what and how to get them?

    It seems like ANA is the standard test for lupus.

  • ANA is useful but not definitive. Anti-DSDNA is more specific. There are so many more - why don't you post in Lupus UK HU too?

  • Thank you - will do 🙂

  • Wow, your post has brought back so many memories from the beginning of last year when I had a really sudden onset of chest pain. I really really feel for you.

    I went to A&E where they told me I had pulled a muscle in my chest and it would gradually get better on its own. It never did, in fact it got worse, and the pain spread to my thoracic spine. I was at my GP almost every day begging for stronger pain relief because none of the pain killers they prescribed me even touched the pain. I was sent to an Acute Receiving unit at the hospital who carried out all sorts of tests for pleurisy, pericarditis etc and was given a diagnosis of Costochondritis (inflammation of the cartilage where your ribs meet your breastbone). They say Costochondritis pain mimics a heart attack. I had never experienced pain like it before in my life, and it was impossible to lie down to sleep. It was like a form of torture. What you have sounds very similar. Then 6 weeks later my right knee joined in the party!!

    I begged for intercostal steroid injections the first time I saw a rheumatologist, but he refused, saying he just wanted to see if it would naturally run its own course..... (bastard!). Five months later I was eventually diagnosed with one of the seronegative spondyloarthropathies (Ankylosing Spondylitis), and am now on treatment which has made a big difference to my pain and had mostly given me back my life. My best advice, is just keep going back to the GP. They will realise just how bad the pain is for you if you keep presenting yourself.

    You never mentioned what pain relief you are taking. I couldn't tolerate co-codamol or Tramadol, but for some reason could tolerate Oromorph (liquid morphine). I used to take Oromorph and Amitriptyline at bedtime to try to help me sleep although used to find that the Oromorph stopped working after a couple of hours. You can also ask for some slow release morphine tablets which might help you sleep a bit better.

    I remember thinking that the pain would never go away, and I was just going to find some way of living with that pain but my Costochondritis did eventually ease. This is a really frustrating time as it takes such a long time to get tests done/diagnosis etc. Just rest up and take it easy. This is a fab support group, I don't know what I would've done without it sometimes. Sorry you've had to find us, but hopefully you will be glad that you did. Take care. Mhairi. xx

  • Thank you Mhairi - and sorry it brought back painful memories ☹️ Did your chest pain start after an infection at all? I've been pretty much terrified for the last 6 months, so many sleepless nights, doctors appointments, specialist appointments and barely able to get comfortable at night. I do feel like the pain will never go and have to 'guard' myself.

    Regarding medication, I only have paracetamol and ibuprofen which I taken daily. The rheumatology clinic prescribed me Naproxen but I am not keen on the PPI which they said I'd need to take with it. I do need something stronger though, so thank you for the the recommendations 🙂

    I've looked up everything online (doesn't help at all as I suffer from anxiety). I do have tenderness in my chest and just a few months ago nearly flew off the bed when the rheumy examined me 😥

    Interesting you say that your knee joined in as my knee started to get pain and locking up maybe 8 weeks after, along with my feet. The pain I get in my back is in my thoracic spine area.

    Do you mind me asking how they diagnosed you - was it on clinical symptoms only or blood tests too? Did your chest pain ever feel like stinging (as well as stabbing)?

    Thank you. xx

  • Oh and I meant to ask - did you have any imaging done? I am trying to sort an MRI scan. xx

  • I can't believe you've been trying to manage that pain on paracetamol and ibuprofen only!! Get yourself down to the doctors tomorrow and request something stronger! Being in that level of pain is exhausting, mentally as well as physically. Give yourself a break. I found Amitriptyline really helpful in getting some sleep. It provides pain relief but also had a sedative effect.

    I can't remember all the intricacies of how I came to be diagnosed ie blood results, but the bits i can remember were being seronegative (no rheumatoid factor), HLA-B27 positive. I had an MRI of my spine, pelvis and knees where they found evidence of inflammation in my sacroiliac joint which, combined with the blood test results, resulted in my diagnosis of AS.

    As I say I really feel for you. I remember just what a scary time that was - being in so much pain and not knowing why. Once they figure out what's going on they can start to devise a plan to help you. Just hang on in there. This group is always here if you feel like you need a moan or someone to "talk" to - there's always someone who can relate to what you're going through. Take care.

  • I know - I do wonder how I got through as I had about 3 months where I had no painkillers at all, I was working through the agony and many sleepless nights with stabbing pains. I've been back and forth to the doctors so many times 😥 I think the pain and discomfort has also contributed to me losing quite a lot of weight and not being able to put any back on. That and the worry.

    Thanks for that - I'll mention the test at my appointment next week. It's been such a stressful and also lonely time for me, as I imagine it was for you last year. I am so glad I found this forum. Trying my best to hang in there and much appreciate your reply and very kind words. Thank you 😊 xx

  • Hi cappygal i have immense chest pain and after a short stay in hospital it was diagnosed as Chostochondritis which when explained to me it is an inflamed cartlidge in my chest as a result of RA so all i can do is treat it with pain killers which does help a lot of the time

    Sorry cant be more helpful but may just be something to consider

  • Thanks phil_54 and hope your pain starts to ease soon. Does it feel weird sometimes - I get tugging/pulling, itching and burning sensations and also twitches and spasms?

  • certainly twitches and spasms it sometimes feels like my heart is beating like a drum

  • I get that too. It's really distressing not being able to get comfortable isn't it :(

  • yes, I seem to be spending more time on the setee these days although my wife is incredibly understanding she just wants me to try and get a proper nights sleep as she worries, I just find it easier so i dont disturb her.

  • Blimey girl you are going through it darling. I don't have any advice that hasn't already been said. Keep going to the drs and A&E they will have to do something. I am sending you oodles of hugs.xxxx

  • Thanks Sylvi. I feel totally worn out by it all. Hope you are okay. Hugs back. Xx

  • Hiya

    My onset of RA started with a bout of pleurisy/pneumonia whatever you want to call it...

    Christmas party last year, next day I thought I'd pulled a muscle or something in my back after all the dancing etc at the party, didn't think much of it but it started to get worse as the week wore on, I eventually ended up at A&E as the pain was so bad I could hardly breathe - basically checked out and told was pneumonia, given anti-biotics, told bloods had high inflammation markers.

    New Year, started with horrific pain in hands and feet, went to docs and told her I think it may be RA... was referred and I was diagnosed on 1st Feb... given a steroid shot on first visit to Rheumy, chest xrays done, scans etc, started with Methotrexate pills now on injections 15ml per week, plus folic acid everyday except MTX day... since then I've had another 4 steroid injections (120ml) in my bum to ease the pain as when steroid wears off the pain is terrible and I find it difficult to work. Once steroid shot takes effect I feel 'normal' - I know you are not supposed to have many shots but my Rheumy has ok these each time... not sure of the side effects though.

    Seems to me that something like pneumonia etc is a frequent factor prior to diagnosis, not sure if there is a link...

    Hope you get sorted soon, big hugs...

    Sue

    xx

  • Thanks Sue and that sounds very similar in sudden onset. The only thing is my doctor didn't do anything to treat me - did the pneumonia get diagnosed by your blood inflammation? Are your treatments helping? My markers were normal and that's why I am still struggling to get any help as the pain/discomfort I have daily. xx

  • Hiya

    no pneumonia was diagnosed throug x-rays, it was in the new year when I went to docs and explained I think I may have RA as I was presenting with all the symptoms, when the doc did blood test there was some inflammation markers but not much... it was the pain and x-rays that Rheumy had done that gave me the RA diagnosis.

    the only thing keeping me sane at the mo is the steroid injection.. when that wears off I feel terrible. MTX has got my hair a mess and I feel nauseous with it too, I was given anti nausea pills but after reading the side effects etc I decided I would put up with nausea and try to ease it with mints etc... don't know what it will be like when they put me up to 20ml MTX...

    I think you should really try again with your doc and explain the pain you are in. I take Naproxen when the pain is bad if steroid has worn off...

    Big hugs pet

    Sue

    x

  • Thanks Sue. I've sent them a letter and I think they've just finally realised how much I've been suffering. I just can't believe how long it's taken to get them to help, this should've been months ago as I've been there so many times. I would like to take the Naproxen but they said I can't without a PPI :( x

  • Hi-I'm from the US so if my medical terminology is different, you will know why. Brief background on me: I'm a RN, 24 years of critical care nursing with a speciality in cardiac care. So I know chest pain. :) In June of 2013 I developed substernal as well as right and left sided chest pain. Pain varied and went from chronic, achey, nagging, sharp, grabbing to finally acute and very sharp. I was under an incredible amount of stress at that time so I ruled out acute cardiac (LOL, nurses are the worst patients) and figured it was stress and anxiety. In actuality my chest pain was present about a week so I didn't sit on it for a long time. The morning I woke up and my chest pain was sharp and radiating down my left I made an emergency appointment and got into see the Dr right away. EKG showed a probable Anterior Myocardial Infarction per the GP's reading so off to the Heart and Lung Unit I went. Fast forward, it was not an acute MI, but EKG and lab work showed pericarditis. Inflammation of the lining of my heart. At that time the cardiologist didn't know the cause but treated it with usual meds including a strong anti-inflammatory. I did receive steroid injections around the pericardium which helped in the long term. 2016 I get a referral to see rheumatologist after 6 months of severe fatigue, bilateral joint pain, redness and swelling in my hands, shoulders, elbows and feet. Rheumatologist started me on Methotrexate after lab work and bilateral hand MRI confirmed RA diagnosis. He told me at my first visit that he had seen I had pericarditis 3 years earlier and I was an unusual case as the pericarditis was the first symptom of my RA to appear. He said usually heart and lung involvement occur further along into the disease process. It made sense because my cardiologist was never able to find out why I developed pericarditis, all assumed it was due to stress and I agreed with that theory.

    Point of my story. Every person is different and the symptoms don't always come out as textbook perfect or follow the clinical flowchart of how this disease should progress. Keep seeking medical care and providers who will listen to you and who also think outside the box. Become the squeaky wheel. :) Best of luck to you, I hope you get the answers and the care that you deserve.

  • Hi Julia, thank you very much for sharing your story and for your well wishes. It's very worrying having chest pains, and oddly enough I was actually looking up pericarditis just yesterday, as lots of my pain has been just off the centre of my chest. I am most worried that the doctor hasn't run even half of the tests she should have, I feel like I've just been left to worry because I suffer with anxiety and I'm not coping well at all.

    I had similar one sided pains back in 2015 which subsided, plus sporadic hand pains.

    I think I'm going to have to pursue the MRI scan (which two doctors refused me) as I just can't go on suffering like this. I have my rheumatology appointment next week and really need answers and help.

  • I had a similar experience with my GP when it all kicked off last year. She just kept giving me more painkillers and sending me away saying the chest pain would get better by itself with time. It never did. After a month, my friend, who's a doctor, recommended I go to see a different GP to get a fresh pair of eyes on my situation. Was one of the best things I did, as she very quickly recognised that I needed to be seen by rheumatology and referred me on. So why don't you try going to see a different doctor, see if that makes a difference?

  • I've actually just asked to be moved to a different GP. It should not really have had to come to that though ☹️ I'm waiting for their response. Everything seems such a battle just to get the care I need 😥

  • Fingers crossed you get some answers and relief soon. Is it your first rheumatology appointment next week? Best advice would be to write down all your concerns and questions, and bring someone with you to your appointment who can support you and be another pair of ears to take in all the information! Let us know how you get on. Mhairi. x

  • Thanks Mhairi54. I'm making a list of questions. I've had a few appointments with rheumatologists so far but don't think I've been asking the right things. x

  • I'm no expert but your symptoms don't sound like RA,...I was diagnosed with RA last year and was at the point where I could hardly move because of the pain specially in my hands and wrists....My shoulders , neck and jaw were affected and I had a low grade fever,....My own GP dismissed it as carpal tunnel syndrome without doing as much as a blood test,...I'd reached breaking point when my husband took me to A+E one night,...I was in so much pain I wanted to die it was one of A+e Doctors who admitted me immediatley and brought a Rheumatologist to see me,...Within the hour i had a bloodtest and an x-ray and RA was diagnosed,....I was given a Prednisilone shot and it was like a miracle,..3 -4 hours later the pain had gone ,....My advice is don't waste your money by all means go to A+e they saved my life

  • Thanks Harimah, it sounds like A&E really helped you. I've been like that at times with the pain and it's just awful. Doctors have been so dismissive 😥 I really should've gone to A&E but was not sure if they'd help me or just give painkillers & have a fear/phobia of hospitals ☹️

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