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Hello everyone

[Deleted User][Deleted User] Posts: 0
edited 16. Aug 2017, 16:15 in Say Hello Archive
Hi everyone, it's lovely to meet you all. I've just joined this forum as I am currently in the process of being diagnosed.

Since I was 19 I have had bad back problems and have had a few procedures done with little effect. Last year when I was 24 I was referred to a rheumatologist as the results of my MRI and bone scans showed inflammation of my sacroiliac joint and hips. When I attended my last appointment I was told that they think I have a seronegative arthopathy and bilateral sacroilitis, I've not been able to find too much information on the sero negative srthopathy and wondered if their was any information available.

For the last 4 months I have been taking sulfasalazine and naproxen. On my last appointment I was given an injection of depo-medrone to try and boost the effects of the medication. I think this has helped my wrist, as it is not quite as painful which is good but hasn't had much effect on my back and hips as of yet. Hopefully something will help soon as I am finding it very painful to walk in my hips and unconfortable when sitting at work.
The other problem I seem to be getting is feeling extremely tired all the time which makes it difficult to do things sometimes.

I'd be grateful for any advice, thank you in advance

Comments

  • moderatormoderator Posts: 4,082 mod
    edited 30. Nov -1, 00:00
    Hi Kirsty

    Welcome to the forum, I am sorry to hear you have been having problems for the past 5 years with no out come as yet. I have not had any experience with the possible diagnoses you have been given but feel that some of the members may be able to help you with suggestions for fatigue and work.

    However I would like to suggest the following information which may help. This is about different medications you may be offered and their effects.

    https://www.arthritiscare.org.uk/assets/000/001/670/Medication_160117_final_(web)_original.pdf?1488904905

    Also you may find it helpful if you contacted one of our helpline team advisors on 0808 8004050 for more information.

    Hugs
    Denise X
  • [Deleted User][Deleted User] Posts: 0
    edited 30. Nov -1, 00:00
    Hi Denise,

    Thank you for getting back to me, I'll have a look through the leaflet you have sent over.

    It's quite frustrating not knowing exactly what's wrong but it seems to be narrowing it down so fingers crossed I get an answer soon. I herniated some discs in my back which they think may have been connected. I seem to have more days where I am sore all over and tired than I feel well, so would be great for any tips! They did mention adding methotrexate on my next visit in a view months if the sulfasalazine isn't working on its own, so I will see what they say.

    This forum seems very good for questions and support.

    Thank you again.

    Kirsty x
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, it's lovely to meet you but I am sorry you have had to find us. I am under the arthritic cosh at the moment (I have psoriatic arthritis which is playing up) so won't hang about but I know you're there and will do a longer reply later when I've had a rest.

    Take care. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello Kirsty and welcome from me, too.

    It's always good to be able to name what's wrong but fortunately the meds are the same whatever it is. The family 'Arthritis' is is a large and dysfunctional one with many branches. I think they know a fair bit about yours. This is what ARUK says about it http://tinyurl.com/p9nyzpp.

    I hope that helps a little but please do join us elsewhere on the forums where we share tips, moans, groans and laughter :D
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • [Deleted User][Deleted User] Posts: 0
    edited 30. Nov -1, 00:00
    Hi DreamDaisy and Stickywicket thank you for your replies, its lovely to meet both of you. Its really helpful to speak with people with arthritis too, as people who don't suffer tend not to know how unwell it can make you feel.

    I hope you start to feel better soon Dreamdaisy and that the rest helps.

    Thank you for the link Stickywicket, I will have a read through the article.

    It would be good to narrow down the exact condition so I can get some more information, but I have heard it can take a long time to be properly diagnosed, so its great to be able to speak to people on here for any tips and advice.

    Its the tiredness that I'm finding really difficult at the moment, it just makes it hard to do things or concentrate doesn't it.

    It makes me worried when I go out for walks, as I know its the best thing to do, but then I end up in quite a lot of pain later and suffer the next day. To start with it was mainly my back that caused the problem but now it seems to be my back, hips and wrist.

    I always appreciate any advice so thank you both x fsmile
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    The trick with walks is remembering we've to get back again and not going too far and, literally, quit while we're ahead. It's difficult, especialy at first,
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
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