Frustration!! Anyone else felt this??

ali87uk Member Posts: 17
edited 28. Jul 2014, 14:01 in Living with Arthritis archive
I was diagnosed with a seronegative spondyloarthropathy in my sacroiliac joint 2 years ago (I'm 27), which is probably PSa as there is psoriasis in my family.
I'm on depomedrone injections and nortiptaline. I had a bad flare this weekend and as no one was around GP wise had to see emerg Dr who prescriped naproxen and solpadol. I spent the next few hours being sick due to the solpadol! Now my GP has prescribed similar painkillers but slightly less strong. I'm not on Mtx as apparently it isn't as effective with spine conditions as other joints and that vs the side effects meant for now I am not taking it, plus my arthritis seems to be just in my sacroiliac joint and hasn't progressed.

I am just frustrated with the lack of support for flares between steroid injections and feel I have no support. I have pushed to be referred to pain management clinic today.
I see the physio, have a sports massage every month and chiropractor every 3 months or so. But this weekend I was in agony with muscle spasms and I didn't know what to do!

Has anyone else felt like this and what helped you? Sorry for the essay and rant!


  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    Hi Ali

    It doesn't sound like a fun weekend. Have you got a regular rheumatologist? Most rheumatology departments have a nurse on the end of the phone (or via answerphone) who is your first port of call in this kind of situation. If you have a rheumatology department it may be worth calling them and asking to speak to the nurse?

    We all get furstrated with the cycle of flares and meds to control them. It does sound like you are in a very tricky position though. Meth is not the only disease modifying drug though so I wonder if it is worth asking about another option. Steroids aren't great long term and if you keep using them for every flare thats not great. Muscle spasms are hard to deal with - they just get worse and more painful don't they.

    Sorry I haven't been much use and I hope thinge feel better soon.
    Hey little fighter, things will get brighter
  • ali87uk
    ali87uk Member Posts: 17
    edited 30. Nov -1, 00:00
    I've just called the nurses, she said to call back tomorrow... not the most helpful! I feel there is a lack of care and follow up. I myself work in the NHS and try my hardest for each patient to get them where they need to go or recommend that they get seen by the correct person. Really losing my faith though from the patient side of things.
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
    Personally I think dealing with all the various frustations of arthritic life is every bit as challenging as dealing with the pain, fatigue, disabilities and physical limitations.

    I think it was a good move to ask for a Pain Clinic referral and you seem to be doing well by having regular sports massages and chiropractic help.

    I wonder if the Pain Clinic will re-assess your meds. I believe it's true that meth doesn't work as well for backs as for other bits but there are other DMARDS. Regular steroids, if there is no plan to reduce them, would seem to me like short term gain over long term damage. I only have steroid jabs very, very rarely. In fact they constitute my back-up plan which, I guess, is what you're looking for.

    You say the solpadol caused your sickness but it could just as easily – maybe even more so – be the naproxen. Anti-inflammatories are notorious stomach-wreckers and, if taking them long term patients should be prescribed a stomach-protecting med with them. Always take your pain meds with food – just a small amount eg a plain biscuit, will make all the difference.

    In short, I'd ask your rheumatologist what they thought about a DMARD rather than the steroids as being your basic treatment. Then you have plenty of back-up options – steroids, NSAIDS (with a stomach-protector) and painkillers.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Hi and welcome from me.
    I am sorry to hear that things are tough at the minute..
    the pain clinic is the best place to go for pain control, they can prescribe things that your GP may not feel happy dishing out.
    Sadly flares are a regular thing for a lot of us, as said before the steroids are best left for back up times.
    I as well as many others here really do understand the pain and frustrations that go hand in hand with with it.

    wish I could offer more advise but it sounds like you are on the right track with thempain clinic and awaiting a chat with the rhuemy nurse.

    best of luck...
    n035.gifRa-1996 -2013 RIP...
    Cleo - 1996 to 2011. RIP
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Hi ali87uk
    I don't think we have met so welcome from me
    I really do feel for you ,I am waiting to see a neuro surgeon for my back and the sacroiliac joint ..I have never had pain like it and nothing is touching it at the min..I think they are going to offer injections into the joint to see if this helps, so you could ask about this ..have you been referred to a pain clinic..they can organize this for you..I have learned you must speak up and be heard when you see someone, please let us know how you get on
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Frequently. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben