Need my life back.....please help me!!!

Hello, I live in Brighton, I'm 30, was diagnose with RA over 3 years ago.

I stop my treatment with MTX tablets because it wasn't working for me. I'm seeing my nurse in September and starting with the injections.

But after all this time I still finding hard my day to day life.

I stop doing exercise and became a bit depressed. I don't know anyone who suffers from this. My friends and family support me but it's difficult.

I want to start exercising or taking an activity to help with not only with my body but my mind as well.

Just until now I come to terms with my RA, now I need a bit of guidance taking my life back....where to start? Who I can talk? Swimming or yoga and where?

I need to meet others like me....where are you...

13 Replies

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  • Well we are all here and a lot of us feeling like you! I had three and a half years till they hit on the biologic which I think is making me feel a bit better.

    For me patience was a virtue. I dole to a counsellor who helped me a good way in coming to terms with RA and helped me with coping mechanisms. I think depression is not uncommon due to pain and uncertain was and I was ashamed to be offered antidepressants. How daft was I coz they helped and I came off after 6 months.

    I too found exercise impossible and tried swimming but it was initially just too painful and I had loads of problems putting on the cossie!!!

    Glad you are going on the nor toons and I know it seems ages awayy bug in the schemf of things the time will pass and your treatment will start. Make sure u take ur pain relief regularly is my tip. Good luck and hope u prove soon cc

  • Hiya Amapola & welcome to our happy band who will be here to support you through what sounds like a rubbish time at the mo.

    You've already received good advice from allanah but I would question if you feel whether you're well controlled at present making things worse than necessary for you. As you don't mention if you are taking anything else for your RD is it possible that the pain & lack of your DMARD is having an effect on how you're feeling? You say that your MTX tablet med has halted until you start injections but were you not advised to continue taking them until September so it stayed in your system until you start injections? I'm a little confused also if tablets didn't work why the injection form is your next step, unless it was because of side effects the tablets had?

    Sorry for the questions but without knowing the answers it's difficult to figure out to help.

  • Well i stop taking my MTX an foli acid at the beginning of this year. Right now I'm only my pain killer Solpadol(codeine&paracwyamol)

    I was lucky I didn't had any side effect. I stop that treatment because I felt it wasn't working, I had lots o flares, swolling and a lot of pain.

    I saw my specialist last month and she thinks the treatment with injections can be the one for me..

  • So am I right in thinking your Specialist stopped your MTX? If that's the case why was nothing but Solpadol advised,by that I mean an alternative DMARD? Or did you decide it wasn't working & withdrew it yourself. if that was the case do you know it can take up to 12 weeks to notice any benefit?

  • Hi there,

    if you google 'NRAS Brighton' you will see there's a social group in your area. Why not get in touch with the group and get to meet others in the same situation. And if you are able to go swimming without too much difficulty, that's a relatively easy thing to do that will lift your mood and possibly help with pain.

    I do agree that September seems a long time to wait for Mtx by injection. You don't say how long you were taking Mtx tablets for, but as nomoreheels says, it takes a fair old while to feel the benefits - did you give it at least 3 months?

  • I already did, sent them an email a week ago but haven't heard from them.

    I was taking MTX tables for over a year.

  • Sorry for more questions Amapola, but really trying to help you. If you were taking the tablets & they didn't work why is your Rheumy intending prescribing the same drug in a different form? I'm confused & without some sort of understanding I feel we won't be able to answer your plea for help. :)

  • That's a shame - if I were you I'd send another email, might as well keep trying! I wonder if anyone on here belongs to the Brighton Group? Perhaps you could do is write another post here with 'Brighton Groups' in the title to make it even easier to spot.

    Also, how about phoning your rheumy nurse to see if you can get an appointment sooner? Just waiting around is a bit depressing, especially if you are without medication.

  • Hi ya,

    sorry to read you're having a bad time. I know what its like, i was diagnosed after my second baby, when i was 29, it is rough feeling exhausted, painful and swollen, i also find the annoying slow timescale of treatment effects adds to the frustration.

    i too wonder why if mtx wasn't helping theyve just planned to switch to injections rather than a combined therapy. Or switching your dmard? I was on hydroxych, methotrexate injection, folic acid and an joint targeting antiinflammatory. When that didn't work they added an anti tnd, they didn't stop the other drugs?

    i found it really helpful to talk to nras helpline, they set me up a telephone call with a volunteer who was in a very similar situation. That chat really helped me, could be useful for you too?

    hope you feel better soon x

  • A friend of mine switched from tabs to injection and is getting on better seems it enters the blood stream direct rather than thro the stomach so works better. I tried Tai Chi and found it relaxing.hope you get sorted soon.

  • I know how you feel. I'm twice your age and find it so hard but it must be even more difficult at a younger age. I tried to find a group locally (near Brighton). The trouble is the groups are usually either during the day, when I'm at work, or in the evening and I'm afraid I don't do evenings any more, the fatigue is just too much. I see a consultant at the Royal Sussex where I assume you go and I believe I'm very lucky with mine after reading some of the horror stories on this site, she treats the whole body and not just the disease. If you can go swimming I would think that's very good exercise and quite gentle. I can't swim but tried to get back to the gym last year but couldn't keep it up. Depression is a problem. I'm not looking for a 'support group' as such. I'm much more interested in meeting those with the same or similar disease who want to go out and be 'normal', meals , pub etc. Then the disease just becomes a topic in conversation and not the whole reason for meeting. Good luck with your search.

  • Thanks for your comment. It made my day.

    I want the same, a "normal" meeting

  • Made me smile too Amapola & thanks benjijen you've put the answer to a question why I missed going for the first time to latest local meeting to me which I was thinking I was intending to go to (?!) - I didn't really wish to be with other people in that sort of group & would much prefer an informal get together over a drink or meal with people with the same problems. Guess it was in the subconscious bit of what's left of my brain all the time!!

    I hope all this made sense it's been a long busy day. ;)

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