Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
it's nearly impossible for me to get out of bed now. between the pain in my shoulders and the joints from the hips down, and the ridiculous fatigue, i feel horrible every morning.
after a couple of hours, usually by the time i get to work, everything has eased up a bit. and i don't really feel fatigued during the day. but once 9pm rolls around, i'm thinking about bed. and then no amount of time sleeping is enough.
i've been running myself a bit hard recently - i'm working 19 hours a week and interning 12, so i'm out of the house 'working' 5 days a week for about 30 hours, plus travel time. which doesn't sound like much to most people, but i haven't worked more than 12-15 hours in a week since last june (with a one-week exception when i was doing some training). this is my last week of this schedule - then i'll be done with my interning and only be working 4 days, 19 hours.
at least, until they offer me full time. which i'll take because i love the job.
i've taken my 4th dose of humira with no effect, and my rheumy moved to texas (i'm in new york). i'm considering stopping the humira now and taking a bit of time on just mtx, maybe skipping a couple of doses and getting some tattoo work done, and trying some natural treatment. not to see if they 'cure' me, but to be able to see what kind of impact they really do have. if i tried anything now, i wouldn't know if it was the natural treatment or the humira. i'm considering acupuncture and something called a 'morphine bomb' - it's a particular combination of essential oils that you take internally for chronic pain relief.
sorry for my mouth vomit - thanks for listening :)
after a couple of hours, usually by the time i get to work, everything has eased up a bit. and i don't really feel fatigued during the day. but once 9pm rolls around, i'm thinking about bed. and then no amount of time sleeping is enough.
i've been running myself a bit hard recently - i'm working 19 hours a week and interning 12, so i'm out of the house 'working' 5 days a week for about 30 hours, plus travel time. which doesn't sound like much to most people, but i haven't worked more than 12-15 hours in a week since last june (with a one-week exception when i was doing some training). this is my last week of this schedule - then i'll be done with my interning and only be working 4 days, 19 hours.
at least, until they offer me full time. which i'll take because i love the job.
i've taken my 4th dose of humira with no effect, and my rheumy moved to texas (i'm in new york). i'm considering stopping the humira now and taking a bit of time on just mtx, maybe skipping a couple of doses and getting some tattoo work done, and trying some natural treatment. not to see if they 'cure' me, but to be able to see what kind of impact they really do have. if i tried anything now, i wouldn't know if it was the natural treatment or the humira. i'm considering acupuncture and something called a 'morphine bomb' - it's a particular combination of essential oils that you take internally for chronic pain relief.
sorry for my mouth vomit - thanks for listening :)
Others may have opinions on Humira.
Fourth dose? May take a little more time to rule out Humira.
Any leads on a good Rhuemy?
I'm for anything that could improve quality of life with out harm.
Never heard of "morphine bomb" although I thought most oils were not for ingesting. Young Livings are suppose to be safe. Not sure about other brands.
At the same time RA can do it's thing pretty darn fast. That concerns me Steph. It's been tough lately I get it. I'm in shoes much like yours for now.
I hope you find a good dr. It's time to discuss your other options.
You need & deserve some relief.
Blessings, Sammy
It's great you are doing something you love, and something you have worked hard to qualify for. Now you need to feel well enough to have both work and a life.
I know you never have felt like Humira was the answer. If you're eight weeks into it without much improvement, the chances are lower that it will do much. This might be a good time to start over with a new heumy, as much as we all hate doing that. Did your old one give you any leads on who might be a good fit for you?
the non-inkers ares not getting it :)
I think what you really want now is to get MORE ink, NOW thus the humira break. oh go ahead if you have to have the ink :) though I did not stop orencia when I got new ink last May. but you had a difficult heal i think on a re-ink didn't you like a while ago?
so do what you want if you need the holiday. But for biologic in general, given no adverse effects, I was on enbrel about a year and humira a year. i never have to hear a second guess from the rheumie about going back and re-trying. i also get lung infections while I am on biologics so I need a year to get any good run in that goes past 3 months before I have another chest infection.
kudos on the academic accomplishments
and what the hell is wrong with 9 pm huh? better than my unmedicated 7 pm... :)
depot
i know the progression can be really fast, but it's just so frustrating that nothing has helped at all. i think that's kind of why i feel like taking the break, getting some ink, and trying some natural remedies. and @sammy, most people do not recommend ingesting essential oils because many are caustic. i've studied them for a long time and am pretty confident with which ones i can safely ingest.
i do keep moving. i'm up and down all day at work, and i'm doing aquafit (most) saturdays. tattoo inks aren't regulated by the FDA, and blends are considered proprietary: no one has to share their complete ingredient list. my artist uses american-made inks from a reputable company, one that we've used for years. but i don't have any allergies or food sensitivities. not everyone does.
i'm just so frustrated with the things the disease is taking from me. i have so many tattoos left to get.
I wish you every success Steph :) - keep us posted :)
I'll post a new thread on how I felt about being intimately acquainted with this disease for 5 months unmedicated except for natural.
Depot