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On MTX after 10 wks off-feels like I'm back at square 1-BAD PAIN

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Posted 1/31/2011 12:29 PM (GMT 0)
I am in nearly constant BAD pain, day & night, except when it's agony, and have felt like this for the past 5 weeks. I've been too miserable to post until now.

I posted in Nov about having pneumonia. I'm mostly recovered, but I had to go off my MTX & Orencia infusions, even after a clear chest x-ray mid-Dec, because I still was sick & running a low-grade fever until 2 weeks ago. Doc said it would take 6-8 wks to completely bounce back from the pneumonia after the clear x-ray, hard to tell if I'm there yet with everything else going on.

Long story short-I woke up Dec 26 in agony with a horrible flare, got ok from rheumy to up prednisone to 15mg/day until the agony subsided, but by Day 10 I started feeling like "lock me in a rubber room" crazy and had to lower the dose so far that it doesn't help anymore! My last resort for pain relief makes me crazy now, I'm waking up in a giant mass of agony from head to toe, worst in the hands/wrists. This is lasting about 6-8 hrs after waking, and subsides a bit, down to 8 on a scale of 1-10. Then my chronic pain kicks in. The pain just keeps on coming...So sick & tired of it!

I finally kicked the fever 2 weeks ago, so got to start back on my MTX (10 mg/once weekly) & after I saw rheumy last week he upped it to 15 mg/weekly (my 2nd dose a couple days ago) but it feels like I'm back at square one, in agony most of the day, then down to just high levels of pain, and rheumy says it'll take time for the MTX to start relieving the pain so be patient-like I have a choice.

I was so desperate for pain relief that I asked my pain mgmt doc (for chronic muscle/nerve damage from auto accident) if I could up my opiates temporarily, because coincidentally, my chronic pain levels have also increased, and he agreed to it, but it turns out opiates don't really help my RA pain that much, so I'm between a rock & a hard place.

I don't know how I've made it through the past 10 weeks. Life is harder right now than it's been in a long time-since I was first diagnosed with RA 2 yrs ago! I can't give up but I want to so bad right now! I don't know how I'm doing it, and I'm so, so tired of it all-the RA agony, the exhaustion, barely able to function, and when all that subsides a little, the underlying chronic pain makes its appearance. Great, now I'm crying again! I'm giving up right now and crawling into bed.

Sorry such a long post-I'm a mess! Any hopeful helpful or just caring posts greatly appreciated.
Posted 1/31/2011 6:50 PM (GMT 0)
Awww lady- I hear you! I remember feeling like you during my horrific onset.

Why is it that pain meds do not touch RA pain???? I have yet to find any that will even take away the background chronic pain. But the Agony RA pain- forget about it. I remember taking oxycontin and then just trying to stay as still as possible to get relief. Like you said- that probably brought it down to an 8.

It's very depressing to feel no relief. It makes you feel hopeless. You are left to wonder when is this going to quit? I remember wondering if it would ever quit?

My (new)doctor put me on 40 mgs of prednisone to trigger my body out of that pain cycle. Would you or your dr. consider a dosage that large? I stayed on it for a few months then it took me a year and a half to taper of completely which sucked but if I ever get to that point of pain again....I would do it all over again.

That said- I've been experimenting with not taking my MTX. It's been 6 weeks. At first I didn't see a difference in pain levels. Then I felt like I was having more during certain periods of the day but it went back to what I remember as being "normal" for me. Now the past week I think it may be coming back bad. I have a little swelling (not a lot) and besides increased pain I am really noticing my hands being very very clumsy. I am having my blood test within the next couple of days and this will probably end my experiment. I want to see that my ESR and CRP are elevated. My doctor has been pooh poohing my chronic pain saying my blood tests say remission. He says maybe that horrible "rheumatic incident" really isn't RA. So lets see.

Yet when I read your story Lady- It's a wake up call. It took you 10 weeks to get to "the bad place". I don't want to go back to "the bad place". That will mean I live in "the chair" again. Scary scary time that was.

I wish you all the best in finding relief. Try a lot of hot showers, icy hot, heating pads, wrap yourself in ace bandages....pain pills do not work.  :(

I just remembered that you couldn't tolerate 15 mgs of prednisone so I guess 40 is out of the question for you.

I sure hope you feel better soon!

Posted 2/1/2011 5:20 AM (GMT 0)
Hi Weary-thanks for the reply! Today was another Agony day. I've been up for 10 hrs now, and a fair amount of the RA pain has subsided over the past 2 hrs, I have no idea why, but I'm just grateful that it's mostly just the chronic pain I feel now. That can be managed, more or less.

I feel like I should take full advantage of this bit of time right now when I can put thoughts together coherently enough to make a list of stuff I need to do, bills that need to be paid, maybe even balance my checkbook while my brain's not fogged out with pain or pain meds, but I really just want to lay down & enjoy this time of relatively low (6'ish) pain.

There is absolutely nothing fair about this stinking disease!!! I'm finally more mentally coherent than I've been all day, have much to do, and all I want to do is go to bed. I feel guilty doing that-I always feel like I should be doing more constructive things when I have the opportunity (low pain level), but I'm just so tired...

Thanks so much for your encouragement. I can't fully express how comforting that is to me right now. Bless you, but careful with the MTX. I'm living proof of things going south without taking it, and I wouldn't want my worst enemy (if I had any) to go through what I'm enduring. Be well. I'll keep you posted.
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