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Overwhelmed and scared

Posted , 5 users are following.

optimistic100
optimistic100

Methotrexate was rough. I gave up after 6 months. Yes, it stopped most of the pain BUT...... I was sleeping from 6pm til 6am and taking a one hour nap before leaving work to drive home. Flare ups continued. I stopped the med cold turkey. For three weeks I was pain free and my preciously foggy brain cleared up perfectly. I lost 6 months of my life. Now the pain has returned and I am back on Meth, much to my dismay. I was always weary and afraid to even take my grandsons for a sleep over because I feared getting ill when they were with me. This is not living. Help

0 likes, 5 replies

5 Replies

  • kathie37110
    kathie37110 optimistic100

    Posted

    Methotrexate did not work for me either and I had the same reaction.  I weaned off of that and Lyrica - at that point my next step was a wheelchair.  Since getting off of those meds I have used acupuncture and a chiropractor for pain management and have modified my diet greatly.  Getting rid of dairy was a big one.  I love dairy.  But it has capsin in it which causes inflammation.  I found my pain reduced when I gave that up.  Also gave up caffeine.  It is a long and exhausting journey.  Has taken me three years to find what works for my system.  Stick with it and hoping you can find what works best for you as well.
    • optimistic100
      optimistic100 kathie37110

      Posted

      Thank you Kathie37110,

      I have done the same things you have tired. The accupuncture was torture on the sore joints. I even see a Chinese herbalist who has me drinking tea made from "farm raised scorpions". I cannot tell if this has helped. The one thing I understand is that dairy is the enemy. My newest tactic is trying to make my body more alkaline. This will help the inflamation too. Lastly, coconut water without too much sugar (Bai Waikiki coconut water) seems to help. I think it is the megadose of potassium and magnesium. It works for me to reduce inflamation. I am not recommending it. I can only say it helps me.

    • kathie37110
      kathie37110 optimistic100

      Posted

      And that is the thing - finding what works for you.  I have been seeing a chiropractor lately who has helped more than all of the specialist put together.  She isn't a bone cracker but does gentle manipulation.  Took me a long time and several tries to get off dairy.  Caffeine was easier than I expected.  I also had vertigo for four months and took a lot of falls, which is what led me to the chiropractor.  I know it is all very exhausting and pills are not the answer for me.  Sounds like you are on the same path as I am.  I will try the coconut water!

       

  • Rowbirdie
    Rowbirdie optimistic100

    Posted

    Hi optimistic- I like your name!

    I m 64 now and was diagnosed 2 years ago.

    Methotrexate is the gold standard treatment but has your rheumy suggested a different dmard such as sulphasalazine or hydroxychloroquine? I currently have all 3 plus a biologic infusion every 6 months as I had a severe form.That s what it's taken to deal with the pain . So yes, I still seem to need far more sleep than before, but at least my RA is under control and I am able to look after grand children, go dancing and walking ....but with less stamina than I used to have and probably more brain fog than I d like.

    i m just letting you know my journey as the meds have been a life saver to me despite extreme reluctance to be putting so much ' stuff' into my body. But then RA is destructive and debilitating if left .

    hope you manage to find what works for you.

  • Guest
    Guest optimistic100

    Posted

    It didn't work for me. I told the doc if he didn't take me off of it, I would. Fortunately I got on Humira and like you said the brain fog cleared up. I always considered the day after taking MTX to be wasted because I couldn't do anything. I will never take that stuff again
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