Emotional wait for new meds
em12345
Member Posts: 5
Hi,
I'm currently waiting for my next hospital appointment for a final decision on whether I will start Anti-TNF treatment (from methotrexate) for seronegative arthritis. While it's only three weeks now (I'm counting down the days!) I'm really struggling emotionally. Although my pain/swelling isn't as bad as it's been in the past it's ongoing and I've been feeling run down for months.
I feel like I should be emotionally stronger by now. I've definitely been through the acceptance cycle (I was diagnosed at 23 and am now 29) and learnt a lot from a great Challenging Arthritis course a couple of years ago. Yet every couple of years the arthritis seems to knock me down and I really struggle to be positive. I can't seem to stop being teary and tired. Do other people have similar problems? Any advice would be very gratefully recieved.
Thanks,
Emily
I'm currently waiting for my next hospital appointment for a final decision on whether I will start Anti-TNF treatment (from methotrexate) for seronegative arthritis. While it's only three weeks now (I'm counting down the days!) I'm really struggling emotionally. Although my pain/swelling isn't as bad as it's been in the past it's ongoing and I've been feeling run down for months.
I feel like I should be emotionally stronger by now. I've definitely been through the acceptance cycle (I was diagnosed at 23 and am now 29) and learnt a lot from a great Challenging Arthritis course a couple of years ago. Yet every couple of years the arthritis seems to knock me down and I really struggle to be positive. I can't seem to stop being teary and tired. Do other people have similar problems? Any advice would be very gratefully recieved.
Thanks,
Emily
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Comments
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Em don't be beating yourself up about being emotional and tired. IT's a difficult thing you're dealing with and having to wait for a decision while tired and in pain is not easy for anyone. Can you get anything to help you while you're waiting? Maybe see your GP? It's good you've come on here and can let it out a bit if you know what I mean.
I wish there was something more I could say but hopefully someone else will come along soon and be more articulate.
big hugs and hope you soon get a decision and feel better soon
rita0 -
Thanks for your response Rita. It's been really good to have somewhere to write down how I'm feeling and know that people reading understand. My doctors have been good. They have referred me for some counselling but... there's a waiting list. A lot of the advice has been painkillers and waiting it out and seeing how the anti-tnf treatment goes. Em0
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Hi
Yes, I get emotional and weepy at least once a week! It's normal it's hard to accept that you can't physically do the things you used to do or enjoy the things you used to do. It's normal to feel this way. We have to accept all these changes to our lives and our bodies. We're dependant on medication and often we're dependant on family members to help us. I found relying on someone else the hardest. You soon find ways of coping.
It's not easy but remember you're still the same in your mind.
Take care and remember you're not alone in feeling like this.
Warmest regards
Sharmaine0 -
Hi Em
I know exactly how your feeling!! Im going through the same thing at the moment. Im also waiting for a hospital appointment which cant come quick enough!
I was diagnosed with JIA 4 years ago at the age of 14 and have coped quite well with a few spells of feeling run down and upset but having the biggest one yet! Ive found just remembering the times youve felt like this before and that you came out of it and felt your normal self helps. And spoil yourself! Lots of bubble baths and treats u like to boost your spirits
Hope you feel better soon!0 -
Hi Em I started on anti-tnf in March after a flare up lasting 18 months so I understand your anxious! But hang on in there because it is fantastic. I couldn't cope with mxt because of the sickness but with anti tnf I have had no side affects at all apart from the stinging of the injection but that lasts a few seconds. I was diagnosed 14 years ago and have only just in the last couple of years accepted that this is life now and it isn't going away. I have accepted that I will have periods of pain but have also learnt to cut myself a bit of slack and as someone else mentioned treat myself a little. Hope time flies for you x0
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Thanks for all the messages of support/advice. I can't tell you how touched I am. It's been really helpful to hear that I am not alone and that other people are prone to crying too.
I've arranged some counselling over the next couple of weeks and hopefully that, treats, bubble baths and generally not being so harsh on myself will help.
Really good to hear the success you've had with anti-TNF Mrs Dalloway.
Laura - let's hope time until our appointments flies by.
Thank you. Emily x0 -
Hi there
I completely understand, I am in a similar 'waiting' position. My sero-neg RA was under control with an anti tnf (wow, it was amazing!) but gradually stopped working for me over the summer - just one of those things. It had worked brilliantly for about 18 months and made it possible to live a nearly completely pain free life. I have two weeks to go of a seven week wait to start another anti tnf - the wait is because it's given by infusion and I need an outpatient slot!
The pain is now horrendous, a horrible and very unwelcome reminder of this awful condition. My husband dressed me yet again this morning and I couldn't do a simple school run - couldn't grip the steering wheel. And that was after the diclofenac and tramadol It is not possible to be objective and sanguine when you are in pain. It is extremely difficult to accept your condition and get on with your life when the simplest tasks are nigh on impossible.
Hang in there until you start the tnf - I have had extremely positive experience of them and the hope that my new drug is as effective is keeping me going(ish - I have shed bucketloads of tears over the last few weeks). I will be back at the gym and swimming again soon!
I will be thinking of you
Maddy0 -
Reading this is so amazing. I have felt so alone with my RA for ages now despite a wonderfully supportive husband. When I read the posts in this thread I know that I have found a community that really understands.
I am typing with tears running down my face and I am not sure whether this is the relief of finding folks who understand and share my feelings or my empathy for others in a similar situation.
Which ever it may be, thank you all for being in this community
Mogwill0 -
Mogwill I know exactly how you feel about finding the site! I only know 2 people with the condition but Ive never chatted to them about it or got advice so its great to know that you can log on here and be welcomed and given alot of help0
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I agree with some of the other posts....well all of them really! I too am prone to randomly crying at the moment. Its so horrid. I only found this site a few days ago and it makes me so hopeful to know that we're all there for each other and we can say anything without fear of feeling stupid or anything.
Sending hugs to everyone.0 -
Until I found this site I had no idea there could possibly be people out there who understood how I feel and why other than my hubby. It has made the world of difference to me already and I am so grateful for the support I have received.
My few posts have been on the lighter side of things as I tend to clam up when the going gets tough but I do hope to be able to support you all in whatever way I can as we muddle through together.
(Damn tears)
A x0 -
Hi everyone,
I just wanted to say another thank you for all the support last year. I am now on Humira and it's been life changing. My flare up has finally stopped and I do think that being physically strong helps emotionally too. Today I had a hospital appointment where it was decided to half my dose of Methotrexate.
In two weeks time I start CBT through the NHS (I love the NHS but sometimes the waiting lists are a little long!) In the meantime I had some private counselling which really helped. Along with this forum I found it useful to read the Arthritis Care's booklet about emotions again.
I guess I wanted to remind people reading my old post that it really is an illness of ups as well as downs! :-)
Thanks again.
Love,
Emily x0 -
Hi Emily,
we haven't 'met' but I just wanted to say how good it was reading your original post and then the update!
soooo glad Humira is working for you.
hearing of your experience will give others hope and encouragement....x
Iris x0 -
HI Emily,
well done on getting on so well .... and I am so glad that humira has worked for you - especially since if my current combo doesn't do the stuff then I have to try one of the Anti-TNF's next.
I noticed you mentioned a course of CBT will be starting soon.
I am in the middle of a course of CBT and although it has been incredibly tough at times it has really begun to help. I wish you well and hope that you get a lot out of it.
hugs
WOnky xxx0 -
Hi Em, good to hear from you and delighted you are doing so well. I hope the CBT works out well for you.
rita0
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