Flare or the workings of an overactive immagination?

Mat48
Mat48 Member Posts: 1,161
edited 29. Aug 2013, 04:32 in Living with Arthritis archive
Hi All,

I don't suppose there's anyone here who remembers a trip I made down to Aberdeen about 22 months ago when I was installing an exhibition and had yet to be diagnosed with RA? I was flaring when I arrived and stayed in a disastrous "boutique hotel" which had loads of stairs and was generally an arthritis sufferer's nightmare? People on here kept me company and I got through the week very successfully as a result although I had a pretty grand flare up once I returned home!

Well tomorrow my husband and I are off down to the same city - once more for work but this time staying in a nice sounding corporate hotel with a swimming pool - just for 2 days and one night.

I could say that now I'm a whole lot more confident now - nearly two years on - about my RA being well controlled and behaving itself but actually that would be a lie. I find myself in almost the same situation as I was in then but not as alone because my OH will be there with me this time. This isn't necessarily a good thing though.

He really doesn't get how unwell I'm feeling just now and I don't want him to either. He has to work nights all next week just to get this few days off and I have to drive my middle son down to start uni a week on Friday which is a 6 hour drive each way over a long weekend. If he thinks I'm not going to be well enough to undertake this he will try and take on extra shifts or sacrifice his few remaining holidays to drive my son down instead. I really don't want that to happen because I really do want to take my son down so I'm just having a bit of an offload here instead of telling him how I'm feeling.

I've been taken off injectable Methotrexate now because of polyneuropathy. My GPs think the drug is causing this rare side effect, my rheumatologist is less convinced apparently but he agrees that we won't know until I've come off it. Tomorrow is the third dose I will have missed and I'm told the neuropathy should go away over the next week if the drug has been causing it. It's showing no sign of letting up yet though!

Of course this means there's a likelihood that the RA will return. I've been very lucky that it's been in hiding since April now and I had no swollen joints when examined a month ago. I have been starting to wonder if I even have RA or if it's maybe something more systemic and unusual such as Vasculitis? I'm waiting for results on a retake of my Rheumatoid Factor (was positive in 2011) and ANA (was negative in March).

So this evening, after another night of raging hot sparks in hands and soles of feet that are spilling over into the rest of my body like tiny electric currents - I feel that the RA might be coming back in a different way the last time I had time off my drugs in March. I feel fluey and achy and just really unwell. My feet are both sore, ankles hurt a bit and there's something deep and unpleasant going on around my shoulders and my neck and elbows. Every part of me is ablaze with what feels like electric currents and I have a headache too I don't know if this is the RA returning slowly or whether it's just cumulative exhaustion from too many nights writhing around trying to get shot of the pins and needles and failing miserably! No sign of any swollen joints and no return to full on pain city yet.

I know this is a stupid question because everyone is different but I just wondered if anyone has experience of what might happen when a DMARD is stopped for good with an RA that has been in hiding for a while. Might the immune system go wild and cause a big flare up or could it be rather similar to the start of RA all over again and come back gradually? I may well be imagining things tonight because I'm full of suspense and tension just now. But just coming on here and writing this helps relieve the tension a bit at least. I do feel a proper wimp just now - I just want to cry my eyes out all the time but am absolutely not letting myself because of sons and husband.

Mat

Comments

  • Toots
    Toots Member Posts: 483
    edited 30. Nov -1, 00:00
    Oh Mat, I'm so sorry you're feeling like this. I can't help you with your questions, but am sending squishy hugs your way. You're sounded stressed out and emotional, and even this newbie knows that's bound to make you feel worse. Keep talking to us here if it helps you get it off your chest. Hoping someone will be around soon who can be more helpful x
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Hi,

    I'm PsA not RA but they're both autoimmune & I too have had to stop mtx but for different reasons.

    I'm 8 wks without mtx now & I've been suffering full blown pain from PsA for around 3/4 wks, it's grim :? I have NO visible swelling but my CRP has been raised week on week while all my other bloods are settling.

    I think toots is right ... You sound very stressed!! Stress will skyrocket your chances of a major flare so try & find a few ways to relax if you can. Perhaps worrying about these things not happening or happening in the future etc is just making you worse, it sounds like you need to find a way to only deal with the here & now at the moment!!

    (((hugs))) xxx
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Thank-you both very much for your kind replies. Sorry Debbie to learn that you too are off the methotrexate now. I'm much less stressed this morning after a ten hour sleep courtesy of my new sleeping pills and Amitriptyline (and yes I was told to take them both together!). And paracetamol too - which meant that I've woken feeling ready for the flight I'm due to embark in an hour! Won't be able to respond on my iPhone so please don't be offended if I am out of contact for a few days to a comment.

    Mat xxxx
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    It's great to read that you slept & feel much better for it. Sleep is a powerful tool for physical & emotional healing :)

    Amitriptyline & Diazepam are meds that well known in my house, unfortunately none of it works against my insomnia but hubby sleeps quite well :lol:

    The best of luck with ure trip.xx

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