RA, Lupus & Sjorgrens syndrome ?

Just wondering if anyone else has Lupus & Sjorgrens along with the RA ? Ellie (my 15 yr old daughter) is having bouts of sheer exhaustion, sometimes 4-5 days apart often lasting 2 days. As I said in my last post, the Dr whom we saw on a emergency appt at James Cook, said it was the Tramadol...everyone else said if it was that, Ellie would be tired constantly. Sorry but English wasn`t the Dr`s first language & we really couldn`t understand all she said.I`m in 2 minds whether to take her to A&E as the meds aren`t helping the pain.

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  • I would take her back, don't let her suffer in pain when it can be controlled.

    I too suffer from bouts off fatigue just like your explaining in fact this past week I've done nothing much else than sleep, I've probably managed to stay awake for a total off six hours a day and slept the other eighteen.

    Which I believe is past off an ra flare for me.

    Hope she can get some help soon x

    Take care x X

  • Tramadol can cause tiredness but so can RA, I think the language difficulties you encountered didnt help, from what you say the Tiredness is probably caused by the RA, try and see a different DR x

  • Maybe it would be worth taking her to A&E although that might be even more exhausting for her. I haven't tried Tramadol yet but everyone says it makes you tired. It's hard to know what is the medicine and what is the disease really. Is she on any other weekly medicine such as Methotrexate? I find that I am completely wiped out for 2/3 days after taking mine - it's a pattern I can now adjust to so I know when I'll be good for things or not. No answers I'm afraid I think you need to find a doctor you can really speak to. She's too young to be in this position. I know of a very good rheumy in Oxford who specialises in childhood arthritis. As it's reasonably rare in this age group it would be worth finding someone who specialises in the childhood forms of these diseases even if it means a lot of travel I think? TTx

  • Hi all, thanks for the answers,Ellie`s had Methotrexate, didn`t touch the pain. there` isn``t a pattern as such to the exhaustion so can`t even plan things in advance for her ! having a `good day` so far today, so hoping it lasts.

    The RA nurses were fab at James Cook, regarding the `language barrier` ! Will see how we go over the next day or so..if pain is no better it`ll be a trip to Northalerton. x

  • Methotrexate isn't meant as pain relief as such it is meant to slow down the progress of the disease so should work for pain too but it can take a long while for this to happen. It certainly might explain the additional fatigue though? TTx

  • Hi, Tramadol is very strong, I tried it and couldn't manage as it wiped me out and I could not focus at all. James Cook are great and they have some great anti TNF drugs if other medication has not worked to control the flare ups. My specilaist reminds me to take pain relief, paracetemol and coedine phospate at regular intervals to stop the pain getting on top of me. Good luck and hope she gets on the right treatment to help her soon.

  • I have JRA, Lupus, Fibromyalgia, & Sjogrens. I am in a good place right now, on Mtx, Arava, Prednisone, folic acid & Vit D. I'm now walking up to 5 times weekly too. I had a lot of pain & exhaustion in my teens, when I was re-diagnosed after 9 or so years of remission. Some of it might be her hormones & just growing & the social part too. It takes a lot out of you to be in pain & 'different' from your friends, and not being able to do what you used to do (sports, etc).

    As soon as her meds start building up in her body, they should help with inflammation & pain. I hope that Ellie gets relief soon, and you too. Since I'm in the US, I don't know what A&E is, but it sounds like going there might be a good thing for Ellie. Hang in there.

    Christine

  • Christine A & E is the 'accident and emergency' department in our NHS hospitals, no appointment needed. Walk in, sit and wait (can be up to 4 hours) but you do get seen (eventually). Or, taken in on a stretcher by ambulance, seen as soon as they can and then taken to a ward in the hospital if it's necessary. When it's children they are pushed through as quickly as possible and are seen as a precident over others if possible. Don't know what your equivalent is.

    Judi

  • Oh, thanks Judi. We have the emergency room at any of our 3 main hospitals in Lincoln, and also some LinCare offices that take less serious stuff. I've never gone to LinCare before, but it's nice to know that they have evening & weekend hours as well as the hospitals do.

  • Hope Ellie gets the pain sorted ASAP.

    Would something like pepsi max, coffee or something like that help with the exhaustion? Something with a bit more caffine, I know it's not good for RA but when I'm feeling exhausted I have an extra cup and actually found it has helped (3 mugs instead of 2 mugs)

    Judi

  • Be careful of too much caffeine, it takes the calcium out of your body. I'm not supposed to have any because of my osteoporosis. (I don't avoid chocolate though, I 'need' a piece every day).

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