New to here, confused and frustrated

Hi, I'm new on here, just wanted to say hello and ask for some advice. I've recently been diagnosed as having Undifferentiated/Seronegative Inflammatory Arthritis after becoming very unwell suddenly at the end of January (no symptoms at all before this ). Diagnosed with Costochondritis at this time. Then in March my right knee totally swelled up. Saw rheumatologist in May, had knee drained and cortisone injection (which made a massive difference at the time but is now wearing off). Had systemic cortisone injection on wednesday to try to get rid of pain in chest and upper back but it's not worked.... Only on Diclofenac at moment. Trying not to take painkillers unless the pain is unbearable or to help me sleep. If you told me in mid January that in a couple of weeks time I would be crippled with arthritis I would've laughed and said "Yeah right!". Now found myself in this nightmare of unrelenting pain. Please tell me it's going to get better......

17 Replies

oldestnewest
  • It will but not until they get y on dmards drugs, I'm same seronegative RA and OA mine started off with a sore thumb in joint by the end off that month Nov 2014 I couldn't get out off bed everything was swollen but I was put on sulfazalasine,mtx and now hydroxocloroquine which halted the damage, but I'm still not controlled property so am going onto a biologic which will hopefully do the business I'm better than when I first started as I couldn't get out off bed hope y get treatment soon

  • Hi there Mazza_76, glad you found us, but sorry you needed to. Welcome to the site. I'm sure you will soon get some messages of sympathy and advice. I was diagnosed with zero negative inflammatory rheumatoid arthritis and OA 3 years ago, Suffer with hands and feet, also have peripheral neuropathy. Tried a few dmards eg sulfasalazine, did nothing, methotrexate tablets, couldn't tolerate, hydroxychloroquine and now methotrexate injections which are much better, couldn't tolerate strong pain Meds, but have recently been prescribed fentalyn patch at lowest dose 12 mcg which I seem to be just about managing, has helped with pain in feet and hips, lower back pain, but not so much with hands. Have costocondritis too, but couldn't tolerate the diclofenic, I have fibro too. Only take paracetamol for this. I do hope your GP and Rheumy can get you on the right combination of drugs that will help you "feel a little bit more normal". It will then get better to some degree and you will be able to function a little more. It all takes time, but I'm sure you will get there over time.

    Wishing you get some pain relief soon. Please come here any time and there will always be someone to off load to. I would go back to your GP or Rheumy and ask for stronger pain Meds. Are you on any dmards? if so they may need changing, if not ask about them with you Rheumy.

    Jan

  • Mine has been listed as seronegative inflammatory arthritis for nearly 30 years. Pain relief does appear to work best if taken regularly so may be worth a chat with your GP as it does not mean it has to be the stronger painkillers which can make you feel ill as well (codeine, tramadol etc). I take paracetamol and ibuprofen regularly and really miss it if I forget a dose. Once medication has been sorted things will improve but it can take time to find the right one or combination that will suit you. Farm

  • Hiya Mhairi54 & welcome. Yes it will get better once you're started on treatment & a little wait for them to build up in your system. Has your Rheumy discussed which course of treatment he/she's considering for you? It may help to know & also having a look through the NRAS site nras.org.uk.

    My experience was similar though not as extensive as yours seems to be but I went from being perfectly fine to hardly being able to walk in about a month. My h played it down initially saying I had a touch of gout until the rest of my feet & ankles joined the party, how wrong was he??? This was 2008 & I was diagnosed a fortnight later seropositive with the added thrill of OA & reacted well to treatment. I've done very well on my mix of meds, until recently that is, my weakest point has always been the first place it grabbed & proving difficult to bring under control but I'll get there!

    Any questions you only need to ask, we're a wealth of information covering all treatments. Be kind yourself & try not to push through the pain, it doesn't help. If the diclofenac isn't helping do see if there's anything else your GP thinks would be more effective, do ensure you're also prescribed a ppi (stomach protector, omeprazole or similar). NSAIDs can be very effective but like most things it's finding which one you respond well to. Hopefully it won't be too long until you're on proper treatment, only then will you start to feel things improving. :)

  • Hi nomoreheels, That's one of my biggest fears, that it's going to go for the bit that it originally went for. In my case it was my ribs at both the front and back of my chest. Can't even begin to explain how horrific the pain was. Honestly felt as though I was having a heart attack or being repeatedly stabbed in the chest with a very blunt knife. This lasted all night every night for weeks and weeks and was worst when I lay down in bed. Morphine didn't even touch the pain some nights. The thought that that might return completely terrifies me. Had hoped that this was a one off freak acute illness that was eventually going to go away but the longer it goes on I'm having my doubts....

  • Thank you, really appreciate the support.

  • Thank you. It's good to know there are people out there who know exactly how you are feeling. At the moment I'm getting to a point where I'm saying I'm fine, when I'm really not, when friends ask me how I am because I'm sick of hearing myself being a broken record and saying how I'm sore all the time!

    GP doesn't think I have RA as all my blood tests have come back ok and I've presented in a 'non-typical' RA fashion ie chest/back and one knee. This is a whole new world of lingo I'm tying to get my head around!

    At the height of my flare I was on oral morphine, diclofenac, amitriptyline and paracetamol, but thankfully I have managed to get off most of these as the flare has subsided. Now only taking 3 x 50mg diclofenac daily and pain relief as required but still in constant pain. Had really bad reactions to co-codamol and tramadol, now taking Nefopam (a non-opiate based painkiller) but not convinced they do anything. Paracetamol does very little, and don't want to be taking morphine all the time (the only stronger painkiller that didn't seem to have any side effects).

    Knees feel as though they're about to flare up again. Have review appointment in August so keeping fingers crossed that they will be able to sort me out with something that will give me my life back. Would be great to get back to work and some proper exercise!

    My flare up happened 5 weeks before my 40th birthday (happy bloody birthday eh?!), and I was in the middle of a fitness kick to lose some weight before my birthday. The irony of it all is that I was the slimmest and fittest I'd been since before the kids were born 11 years ago! Sods law. Never mind, I'll get back there some day.

    Thanks again for all your support. x

    ps bit embarrassed I chose that username - is there any way I can change it?!

  • Ha ha! Thank you!

  • Ha ha, why thank you!!

  • I'm afraid whilst your GP may be a good general doctor he's not a specialist in the field & appears to be considering more typical bloods & symptoms, as in a seropositive diagnosis. As your Rheumatologist has diagnosed undifferentiated/seronegative this is showing in your bloods as lacking antibodies.... rheumatoid factor (RF), anti-cyclic citrullinated peptides (anti-CCP's). Symptoms are generally, but not always, symmetrical, less so in those given a seronegative diagnosis, though when initially asymmetric they may become symmetrical over time. As you've been diagnosed early onset your diagnosis may change to one of the spondyloarthropathies, ankylosing spondylosis, psoriatic arthritis, reactive arthritis but if your Rheumy suspects any of these he'll arrange an HLA-B27 blood test . This may be tmi just now but I'd recommend you read up on seropositive disease, the more you understand the better, I feel anyway, it's the not knowing which makes one frightened & unsure of prognosis.

  • Ok thanks. Will do that. Part of me likes to do a bit of reading as feel it gives me a bit of control over my situation, the other part of me gets a bit freaked out by what I read. Difficult to know what to do for the best!

  • I recommend you keep to reputable sites to save your sanity, our own NRAS nras.org.uk, Arthritis Research UK arthritisresearchuk.org, Arthritis Care arthritiscare.org.uk & a US site Arthritis Foundation arthritis.org though be aware that quoted figures, guidelines & meds can differ on the last site. Research papers may prove difficult to interpret til you're more au fait with things & I think you've probably more than enough reading for now!

  • Hello and Welcome. I hope that they get you sorted soon.

  • It would be worth asking the rheumatologist whether they consider you are more likely to have spondyloarthritis or seronegative rheumatoid arthritis. To my knowledge the term "undifferentiated" is more commonly used with spondyloarthritis. If that is the case, then diclofenac as an NSAID is the most appropriate first line treatment, and far more appropriate as a starting medication than DMARDs. Were you told to take the diclofenac regularly? As an antiinflammatory it is usually taken regularly at full prescription strength, and isn't nearly as effective if only taken occasionally for pain. NSAIDs aren't particularly strong painkillers, but if your pain is coming from an inflammatory process, then they are highly effective antiinflammatories, but they need to be taken regularly to work their magic. FWIW diclofenac was my magic NSAID when I was first diagnosed with undifferentiated spondyloarthropathy, but I did take it regularly, and pain would definitely return within 24-48 hours of stopping them. Several years down the track my undifferentiated inflammatory arthritis has been confirmed as ankylosing spondylitis.

  • Yes been taking maximum dose Diclofenac since the start but not convinced they're doing anything (or dread to think what the pain would be like if they were working!). Maybe i should speak to GP about possible alternatives. On Omeprazole to protect my tummy. Also taking turmeric regularly along with glucosamine and omega 3 supplements.

  • Hi. How are you feeling now dice your last post?

  • Have just read it back and have to say I definitely feel better although still not great. Going back to work today for the first time in 6 months. Mixed emotions, bit nervous about flaring things back up, but also looking forward to getting some normality back in my life. The last 6 months have been a bit of a blur, can't believe it's been that long. My knee has been great, no problem walking at all and managed to walk decent distances on a recent holiday. Pain in chest and back still there constantly but nothing in comparison to what it was like at the height of my flare in Jan/Feb. Thanks for asking.

You may also like...