Hello! Waiting for diagnosis

Emilola Member Posts: 7
edited 8. Apr 2019, 11:17 in Say Hello
Hi all,
Feel a bit weird posting on here honestly but I'll give it a go.
I've had upper back pain since October and I'd had joint pain on and off since I was a teenager (I'm 28 now) which I just thought was normal. Anyway this back pain escalated very quickly and I was off work for a little while. So I figured it wasn't so normal after all. Got told for quite a while it was mechanical back pain but eventually saw a GP who suspected I have spondyloarthritis and asked a rheumatologist to see me urgently. I'm lucky I live near a very good hospital (where I work as well actually - as a children's nurse). Anyway the rheumy reckons I have SAPHO syndrome which is similar to spondyloarthritis or comes under the same family? I'm not too sure as I'm waiting for a confirmed diagnosis but I have acne as well which is apparently connected to my pain. I've got a full body bone scan and a pelvic MRI coming up very soon.

I've now reduced my hours at work which is better but still a struggle. I'm on etodolac for the pain and inflammation but honestly I feel like the pain is getting worse. I feel like waiting for these tests and then having to wait to start treatment is slowly chipping away. Anyone have any tips on handling pain while you wait for more specific treatment?
I'm doing my utmost to stay positive but sometimes I'm so exhausted it's all I can do not to just burst into tears anytime someone asks me if I'm ok haha.

Anyway, this is getting a bit waffly...but hello and hope to hear from some of you! Any and all advice is most welcome. I may be a nurse but it's very different being on this side of the fence for sure!


  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi Emilola,

    Thank you for joining the forum, it’s lovely to meet you, I’m sure you will find help and support here.

    So you are waiting for a diagnosis, your gp seems very on the ball and has organised further tests for you which will make the diagnosis quicker when you do get to see a rheumatologist. I had to look up SAPHO, I read it can be treated by osteoporosis meds and/or meds for psoriatic arthritis. Right now your main issue is pain. I know it seems out of control but you have taken the first hard step which is to admit it’s there. Now you’ve done that you can look after yourself - here’s a link with ideas to help you manage your pain.


    Just to give you a 'heads up' here’s some information on treatments for arthritis


    It sounds like you have a rewarding and challenging job as a children’s nurse, and now you have a new perspective to offer.

    Keep posting, ask any questions you think of, take a look around the forum and join in wherever you feel comfortable - distraction is a good pain management technique!

    Take care
    Yvonne x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I am sorry you have had to find us. I have psoriatic arthritis which began when I was 37; now I am 60 and have osteoarthritis and fibromyalgia too. Cheerful stuff, eh? :lol: I was born with auto-immune nonsense and developed more aged seven so the PsA was not unexpected (unlike the OA) but I have it without much of the skin trouble so that is a bonus.

    There are around three hundred auto-immune inflammatory conditions so an accurate diagnosis can take time (in my case nine years) but I am positive that the sooner one begins the meds the better the outcome can be; I've seen that with my own eyes at my rheumatology unit and it can only be good that GPs are now much more aware of auto-immune arthritis and how it can present. Two myths still pervade the general consciousness however, that arthritis comes in two kinds and only affects the elderly. Balderdash. DD
  • frogmorton
    frogmorton Member Posts: 28,318
    edited 30. Nov -1, 00:00
    Hi Emilola

    I felt a bit weird posting too the first time Like I didn't really belong here, but everyone was just so nice and understood which just made me bawl. Like you I was struggling with pain at the time, (and had 3 young kids to cope with), work etc

    Pain is the worst thing to manage as is exhaustion. You have taken some steps to helping yourself with the fatigue by reducing your hours, but I'm glad you are still there as work is so good for our mental health as well as our pockets!

    I don't know much about Sapho syndrome, but a quick google shows it is related to PsA psoriatic arthritis.

    Most of us on here have tried and use a variety of things to minimise our pain. From simple painkillers like paracetamol and anti-inflammatories like ibuprofen (I take arcoxia via my GP it's a bit less harsh on the stomach!). Then there is the use of cold or heat....some of us like heated up wheat-bags on our sore bits - some prefer cool packs or ice wrapped in teatowels.

    Some find Tens machines helpful too.

    Sometimes your consultant might try a depot steroid injection too almost as part of diagnosis. GPs can prescribe a variety of different pain relief not available OTC as I'm sure you know from your job. Personally I get by on the whole with BU-Tec patches and Arcoxia the odd paracetamol thrown if for breakthrough pain and amitriptyline at night to relax me and my muscles.

    Take care now I hope your diagnosis comes soon.

    Toni xxx
  • Emilola
    Emilola Member Posts: 7
    edited 30. Nov -1, 00:00
    Thanks for the replies all!
    I guess I find it hard to believe that something could be wrong with me and I keep expecting someone to turn round and say "nope, it's all in your head".
    I use a lot of heat and ice packs, the problem is there are so many sore bits I feel like I need a full body heat/ice pack!!

    Has anyone got any advice about how to portray the pain/exhaustion, etc. to friends and co-workers? Actually my friends are really great and supportive but sometimes I feel cos I look relatively young and healthy, people might think I'm making it up or it's not actually that bad. I don't wanna keep saying I'm in pain cos I don't wanna moan but also want people to know it's happening...Maybe I'm overthinking it but it's something I worry about a lot!

    Thanks for the friendly welcome!! x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Quick reply as I have stuff to do: there are two articles on the web, namely 'The Spoon Theory' and 'There's a Gorilla in my House'. Both give clear but concise explanations of living with a chronic condition. DD
  • Emilola
    Emilola Member Posts: 7
    edited 30. Nov -1, 00:00
    Quick reply as I have stuff to do: there are two articles on the web, namely 'The Spoon Theory' and 'There's a Gorilla in my House'. Both give clear but concise explanations of living with a chronic condition. DD

    Thanks so much! Those are both really useful
  • stickywicket
    stickywicket Member Posts: 27,298
    edited 30. Nov -1, 00:00
    I don't believe you're 'overthinking it' at all. I started with RA at 15 and, in my 20s especially (two kids and no replaced joints) it was tough. We really do have to strike a balance between being honest with our friends and not moaning all the time. It's not easy but well worth the effort because, if we just pretend all is well, they will conclude they're being shut out, we don't want to go out or confide in them. All I can say is it gets easier with practice.