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...
I'm just plain sick of this crap. All of it.
I've had my 14th dose of Orencia this week. Good stuff. No side effects, and it really seems to be kicking in. It's summer, and it's been nice. Not too hot, chilly at night, my favorite. So what's the problem?
About six weeks ago, I reached for something and messed up my shoulder. Horrible noise, horrible pain. The past six weeks have been spent waiting for an orthopedics appointment, waiting for insurance to approve MRI, waiting for the imaging, waiting to get back into the orthopedics office. I know, welcome to 21st century medicine.
When you finally have an appointment, the object seems to be to get you out of there ASAP. Under three minutes? Bonus for the doctor. I really like the ortho-guy, but the practice has been sold to the local hospital chain, which is doing a Hungry Hungry Hippos thing around town. One of these outfits that puts a whole new spin on the concept of "not for profit."
Nothin' in the MRI is good news. Lots of our favorite words: tendinitis, synovitis, tenosynovitis, bursitis, inflammation, effusion, termites, and arthritis. Oh, a tear in a tendon, too.
Great, doc. Glad to hear it. Here I was fearing that nothing would show up. What now? Drugs, my dear. Make sure your rheumy has you on as many drugs as you can swallow, then add some more. Up the prednisone. How about a cortisone shot? No? Are you sure? OK. Go see a physical therapist for six weeks. But, I have decent range of motion and strength. What will PT do? We don't know, but sometimes it helps. Nope, the tear won't heal, but go to PT.
Off to physical therapy. The place has that gym-rat, super-jock air about it, and has "sports" somewhere in the name. Crap- I'm not a sports person, don't want to become one. Not comfortable. Therapist is a nice guy, actually. Until he tells me that an old injury doesn't cause muscle spasm in the spot where I say it does. Oh? I've only had this problem for twenty six years, probably about the time you were learning cursive writing, punk. But of course, you know where it hurts from school, right? My education is in the arts, not PT, so I'll just shut up now. I know nothing. Strength testing, then they show me a set of fun exercises I can do at home. The tech uses lots of gym rat slang. I have to ask her a couple of times what she's talking about.
The PT asks if I see a chiropractor. No sir. Haven't been to the witch doctor, the tarot card reader, or the crystal healer yet either. Passed on the Reiki and the homeopath, too. Oh. My. God. What have I gotten into now? (Some of you may swear by chiropractors. I tend to think they have a horrifying propensity for practicing way outside the scope of their licensure. And for selling overpriced supplements. And for scheduling appointments a dozen at a time, payable up front.)
4 am. Some sore muscles, to be expected. Shoulder hurting like a S.O.B. Muscle spasms throughout my back and neck. The headache from hell, courtesy of all the muscle spasms. The muscle spasm that I'm not allowed to have is especially knotted up.
Rheumy appointment today. Double the prednisone for a bit. Oh, good. There goes sleep for awhile.
It's going to be just sunshine and rainbows around here for awhile.
I've had my 14th dose of Orencia this week. Good stuff. No side effects, and it really seems to be kicking in. It's summer, and it's been nice. Not too hot, chilly at night, my favorite. So what's the problem?
About six weeks ago, I reached for something and messed up my shoulder. Horrible noise, horrible pain. The past six weeks have been spent waiting for an orthopedics appointment, waiting for insurance to approve MRI, waiting for the imaging, waiting to get back into the orthopedics office. I know, welcome to 21st century medicine.
When you finally have an appointment, the object seems to be to get you out of there ASAP. Under three minutes? Bonus for the doctor. I really like the ortho-guy, but the practice has been sold to the local hospital chain, which is doing a Hungry Hungry Hippos thing around town. One of these outfits that puts a whole new spin on the concept of "not for profit."
Nothin' in the MRI is good news. Lots of our favorite words: tendinitis, synovitis, tenosynovitis, bursitis, inflammation, effusion, termites, and arthritis. Oh, a tear in a tendon, too.
Great, doc. Glad to hear it. Here I was fearing that nothing would show up. What now? Drugs, my dear. Make sure your rheumy has you on as many drugs as you can swallow, then add some more. Up the prednisone. How about a cortisone shot? No? Are you sure? OK. Go see a physical therapist for six weeks. But, I have decent range of motion and strength. What will PT do? We don't know, but sometimes it helps. Nope, the tear won't heal, but go to PT.
Off to physical therapy. The place has that gym-rat, super-jock air about it, and has "sports" somewhere in the name. Crap- I'm not a sports person, don't want to become one. Not comfortable. Therapist is a nice guy, actually. Until he tells me that an old injury doesn't cause muscle spasm in the spot where I say it does. Oh? I've only had this problem for twenty six years, probably about the time you were learning cursive writing, punk. But of course, you know where it hurts from school, right? My education is in the arts, not PT, so I'll just shut up now. I know nothing. Strength testing, then they show me a set of fun exercises I can do at home. The tech uses lots of gym rat slang. I have to ask her a couple of times what she's talking about.
The PT asks if I see a chiropractor. No sir. Haven't been to the witch doctor, the tarot card reader, or the crystal healer yet either. Passed on the Reiki and the homeopath, too. Oh. My. God. What have I gotten into now? (Some of you may swear by chiropractors. I tend to think they have a horrifying propensity for practicing way outside the scope of their licensure. And for selling overpriced supplements. And for scheduling appointments a dozen at a time, payable up front.)
4 am. Some sore muscles, to be expected. Shoulder hurting like a S.O.B. Muscle spasms throughout my back and neck. The headache from hell, courtesy of all the muscle spasms. The muscle spasm that I'm not allowed to have is especially knotted up.
Rheumy appointment today. Double the prednisone for a bit. Oh, good. There goes sleep for awhile.
It's going to be just sunshine and rainbows around here for awhile.
all that yack to say that there are very good chiros out there alto. might help you get relief in some way(s).
hope you feel better.
When I was sent to PT after my knee replacement surgery the PTs were located in a sports gym. Yup, real competitive rat packs. I hated it.
Flash forward to being sent to PTs for oncology rehab. The PTs are located in a small gym in the basement of the hospital. It's primarily a pulmonary rehab gym. I love it. I'm done with the rehab but I still go twice a week. The PTs check on me and know about my rheumatoid issues. The prescribed exercise does help. And, I'm inspired by the "old" people dragging their oxygen tanks to the exercise machines.
Good luck, hang in there, and don't smack the PT!
Nancy
NNS, I actually did go to a chiropractor once when I messed up my back and neck carrying too heavy a load. He was of some help, but I would only go back for something similar, not for this.
Nancy, I know people here who have gone to the hospital's cardio-pulmonary rehab program and loved it, including people for whom the whole idea of exercise was foreign and unwelcome.
I'm wondering about the PT. If your shoulder is inflamed 18 ways to Sunday are you supposed to be working it while the inflammation is still high? Can't that cause more damage to the joint and the torn tendon? The whole RA/PsA and PT confuses me. When you should & shouldn't and what it's supposed to help. No Dr has ever mentioned it to me as an option so I've never had that conversation.
My kid gets shoulder tendinitis from pitching and does pt at one of those sports clinics and loves it. Between the rah rah atmosphere & music that makes the windows shake it gives me a headache. I just sit in the car & wait on him now. Too old for that mess now.
Take care of yourself & get something to settle those "imaginary" spasms. Spasms & headaches, especially at night, are tough to live with. So is prednisone insomnia and pain and...
And please don't smack the gym rat. He's young & thinks he knows everything cuz his book learnin' told him so. Just don't let him push you beyond your limits. Soreness good pain bad. Learned that lesson the hard way doing PT after my wreck.
Hope you get some relief from the pain and can get some restorative sleep.
Emerald
Sorry you are having to deal with all the "stuff". Just know that you and all the others witnessed here are in our prayers.
'ole blue ain't doing so hot - have been off a while and really struggle to get to the computer anymore - just need to sit and not do pooh.
Be well all
Bluedogs2
I'm old enough to remember the days when cortisone was thought to put one at risk of tendon rupture. These days, every rheumy & orthopod has a drawer full of prefilled cortisone syringes at the ready.
It gives me the creeps to do their exercises and hear a popping or snapping noise from it. It's nowhere near as dramatic as the first time, but . . . They say not to do the exercises if they hurt. I don't even know what "hurt" means anymore. The low-level background "hurt" I've had for years? Sore muscles? Or just the new hurt?
The double dose of prednisone seems to be kicking in. It doesn't hurt as much, but is still popping. I'm also developing an alarming tendency to say what I think, and my ability to suffer a fool, already not the best, is waning. This is a problem, as I work retail!
The shoulder might need to happen soon though. I'm waiting to see if the gabapentin the neuro put me on works or not. He thinks there's some nerve damage going on but I'm starting to think its inflammation pressing on the nerves. So I'll wait & see.
Those crunchy & grinding sounds are the worst. I wouldn't know what pain either. Honestly it's the houseguest that never leaves. I think we have such a tolerance that if there were a test they'd be amazed what we handle on a daily basis.
I'm glad the inflammation is down a bit and you seem to be feeling a bit better.
Emerald
Your post gave me a chuckle. Wow..can I relate to what you are going through and I am sooooo sorry to hear about the musical medical appointments. I have been to many different PT places. I have found two good PT that I feel really helps. The other PT places I have been to I feel exactly same way as you do. One of the two PT did therapy in a 92 degree pool which I loved (heat really helps me). Think about trying a different PT, but they all give homework. I also see that you stated in your last post that you are now saying what you think. When you live with pain like people do who have RA, it wears on you. I know it makes me short tempered and irritable when I don't feel well. However, if you want to keep your job and you recognize this as a problem, then this is the first step to get that under control.
Big hugs to you!!!
My shoulder just keeps going further down the crapper. Went to PT again today and had a phenomenally bad time. I really really really need to know whether or not to do the exercises they suggest of they set off the severe pain, and no one (this place hands you off to different people at every opportunity) could/would answer, or got back to me with an answer. I emailed the PT himself midday, but haven't heard back. It's really frustrating: I don't want to blow it by not doing what I'm told, but the level of pain and accompanying grinding/snapping noise is not confidence-inspiring either, and I don't want to mess it up worse, which feels like a real possibility.
Maybe things will look better in the morning.
I had frozen shoulder 2 years ago. I went only with the exercises that constituted the activities of daily life...as in opening door knobs, brushing teeth and trying (it is impossible) to put on a bra with a crap gone shoulder. I had a quicker heal this way.
as I recall from reading your posts over time, you work full time and have kids at home. THAT is exercise. I bet you limit your pain meds, go to work, and direct the kids plenty. there you go. that's your PT for now.
the problem with RA is that you are at a tipping point when working full time and managing that disease full time. that's 80 hours. you add another injury and all the attendant bullshit that goes with it including the cure people and their billable services - patience wears thin.
you need to sleep so you can go to work without zombie-ing down the stairs. I hope your pred taper works for you sleep wise. I also hope you turn the corner soon. I remember the desperation of wearing like three layered front zip sweaters (this was the late summer in New England so it was h o t) because I could not get a bra on (I live alone) and I was typing with one arm at work. it was not a quick heal. spasms are like long term labor they just keep coming in waves and you have to keep breathing instead of fighting them more by stiffening up.
feel better and stop following orders, that's not your style anyway, and you know it :)
depot
None of that sounds good. Not the increased pain or the crunchy popping sounds getting worse. Pushing yourself in PT doesn't sound like its helping.
Someone should be responsive and at minimum have the answers to your questions. Hopefully the head PT guy responds to your email. But you know they have a tendency to think PT is the answer to every ailment and if you just keep on keeping on all will be well with time. Go with your gut. Don't cause yourself more damage & pain. You already have a tear. I hope you start getting some sleep again. Being exhausted just makes everything worse.
Get some rest and I hope the shoulder settles down for you.
Emerald