Adjusting life to reduce joint pain.
July 11, 2011 3:27 AM Subscribe
How can I adjust my apartment and lifestyle to ameliorate severe joint pain?
My fiancee is a longtime sufferer of Crohn's disease who recently developed extreme joint pain and swelling as a symptom. We're not sure if it's Crohn's-related arthritis or a reaction to the Remicade treatment she started a few months ago, but either way, it's bad. Luckily we live in a first-floor apartment so stairs aren't an issue, but it's reached the point where standing up from the couch and walking into the bathroom is excruciating.
Beyond moving as little as possible, what adjustments can we make to reduce the pain involved in daily life? Higher seats so it doesn't take as much movement to get into and out of them is one idea that's crossed my mind.
My fiancee is a longtime sufferer of Crohn's disease who recently developed extreme joint pain and swelling as a symptom. We're not sure if it's Crohn's-related arthritis or a reaction to the Remicade treatment she started a few months ago, but either way, it's bad. Luckily we live in a first-floor apartment so stairs aren't an issue, but it's reached the point where standing up from the couch and walking into the bathroom is excruciating.
Beyond moving as little as possible, what adjustments can we make to reduce the pain involved in daily life? Higher seats so it doesn't take as much movement to get into and out of them is one idea that's crossed my mind.
Enteropathic arthritis is a real condition and known complication of IDB and can be treated.
As in all of the spondyloarthropathies, moving as little as possible is a really bad idea and will make her feel worse. I know from my own experience that that's contrary to 'common sense' and I know it's really scary to suddenly be in a whole lot of pain when moving and the impulse is to just not move.
I really encourage her to see a rheumatologist. Her GI doc may be able to help find one who knows a lot about enteropathic arthritis in particular. The rheumatologist may refer her to a physical therapist, who will help significantly in finding ways of moving that work for her and help her have less pain.
posted by hydropsyche at 4:47 AM on July 11, 2011 [2 favorites]
As in all of the spondyloarthropathies, moving as little as possible is a really bad idea and will make her feel worse. I know from my own experience that that's contrary to 'common sense' and I know it's really scary to suddenly be in a whole lot of pain when moving and the impulse is to just not move.
I really encourage her to see a rheumatologist. Her GI doc may be able to help find one who knows a lot about enteropathic arthritis in particular. The rheumatologist may refer her to a physical therapist, who will help significantly in finding ways of moving that work for her and help her have less pain.
posted by hydropsyche at 4:47 AM on July 11, 2011 [2 favorites]
Response by poster: She's getting tests run to rule out arthritis, but right now it looks a lot more like a drug reaction - a sudden flare-up with no history of arthritis in 10+ years of Crohn's, becoming much more severe about a week after her latest infusion.
posted by Holy Zarquon's Singing Fish at 7:39 AM on July 11, 2011
posted by Holy Zarquon's Singing Fish at 7:39 AM on July 11, 2011
One thing my mother has done is have a (high) seat installed in her bathtub/shower. She has the standard builder tub/shower combo and can't get in and out of the tub easily any more. The seat allows her to take the weight off her feet and not worry about falling while she takes a shower. There's a railing that helps her get in.
She also has a riser on her toilet. She refuses to use a cane/walker because she thinks they're undignified. (Don't ask me; I'd use one.)
If there are also problems with her hands (lack of strength, inability to fasten buttons, etc.) there are a lot of gadgets commercially available to assists. The Arthritis Foundation has a daily life section that may be useful in evaluating them (haven't needed to check recently but that's where I'd start). I will say as a long-term thing Oxo tools are the best ever for people who have grip issues, if that's a problem for her.
posted by immlass at 9:52 AM on July 11, 2011
She also has a riser on her toilet. She refuses to use a cane/walker because she thinks they're undignified. (Don't ask me; I'd use one.)
If there are also problems with her hands (lack of strength, inability to fasten buttons, etc.) there are a lot of gadgets commercially available to assists. The Arthritis Foundation has a daily life section that may be useful in evaluating them (haven't needed to check recently but that's where I'd start). I will say as a long-term thing Oxo tools are the best ever for people who have grip issues, if that's a problem for her.
posted by immlass at 9:52 AM on July 11, 2011
I have joint pain in a number of joints, but not all over, so what applies to me may not apply to someone with pain in more/different joints. But here's a lot of my adjustments:
* Everything's set up so I almost never have to bend down. Pots and pans in the kitchen are hung from the ceiling, not stored under counters. Clothes are in tubs on a bench in the bedroom. Anything I can, I keep between waist and shoulder height.
* There are places to sit everywhere in case I need one, except the kitchen, and there's a chair just outside that.
* A lot of people with joint pain get a stool for the kitchen that sets them at the right height for using kitchen counters. On really bad days, I don't touch knives.
* We put in a taller kitchen sink faucet, so that I can use the sink more comfortably without having to bend over so much. Ideally, we'd have taller counters, but that would be a massive remodel and also affect resalability.
* I have a shower stall with grab bars, shower stool, and handheld nozzle; you can put these in a bathtub too.
* We're both tall, so we just replaced the toilet with the tallest one available. There are grab bars there as well. Also, even the toilet paper is stored so that I don't have to bend over to reach it.
* I'm planning to replace our couch with a taller daybed, so I can sit and stand a little more easily.
* With my pain, I get stiff if I am still for too long, so I move around frequently. I have a laptop that I carry around as I shift position multiple times a day. I have a standing desk, I can lay on the couch, I can sit in the recliner.
* We do have a wheelchair in case I have a really bad day and need some extra help. Occasionally I use it like a walker, sometimes I need to be pushed.
An excellent resource is an occupational therapist. They can come to your home and help you work out methods and tools for dealing with problems like this.
This sounds extremely difficult; I hope it resolves for her.
posted by galadriel at 10:59 AM on July 11, 2011
* Everything's set up so I almost never have to bend down. Pots and pans in the kitchen are hung from the ceiling, not stored under counters. Clothes are in tubs on a bench in the bedroom. Anything I can, I keep between waist and shoulder height.
* There are places to sit everywhere in case I need one, except the kitchen, and there's a chair just outside that.
* A lot of people with joint pain get a stool for the kitchen that sets them at the right height for using kitchen counters. On really bad days, I don't touch knives.
* We put in a taller kitchen sink faucet, so that I can use the sink more comfortably without having to bend over so much. Ideally, we'd have taller counters, but that would be a massive remodel and also affect resalability.
* I have a shower stall with grab bars, shower stool, and handheld nozzle; you can put these in a bathtub too.
* We're both tall, so we just replaced the toilet with the tallest one available. There are grab bars there as well. Also, even the toilet paper is stored so that I don't have to bend over to reach it.
* I'm planning to replace our couch with a taller daybed, so I can sit and stand a little more easily.
* With my pain, I get stiff if I am still for too long, so I move around frequently. I have a laptop that I carry around as I shift position multiple times a day. I have a standing desk, I can lay on the couch, I can sit in the recliner.
* We do have a wheelchair in case I have a really bad day and need some extra help. Occasionally I use it like a walker, sometimes I need to be pushed.
An excellent resource is an occupational therapist. They can come to your home and help you work out methods and tools for dealing with problems like this.
This sounds extremely difficult; I hope it resolves for her.
posted by galadriel at 10:59 AM on July 11, 2011
Be aware that if this continues, and you need to install things like grip bars for the bathtub, "wing" shaped doorknobs and faucet knobs, etc, the Fair Housing Act has a provision that requires your landlord to comply - the fine print will decide whether he has to pay for the installation or not, and other details, but for reasonable accommodations that are dictated by a disability like arthritis you have some legal backing.
posted by LobsterMitten at 2:08 PM on July 11, 2011
posted by LobsterMitten at 2:08 PM on July 11, 2011
Fair Housing Act information, for renters with disabilities
posted by LobsterMitten at 2:10 PM on July 11, 2011
posted by LobsterMitten at 2:10 PM on July 11, 2011
15 years of Crohn's here, with a lot of joint pain experience. My last Crohn's flare actually had no diarrhea/blood/cramping at all -- it was all excruciating joint pain, swelling, and rashes. And while I'd had arthritis before (due to too many years of prednisone), it'd mostly been only in my hips. This was a sudden full-body explosion of pain in all of my joints, that even put me briefly in the hospital because I could barely move at all.
So it could be a new symptom of the Crohn's. It manifests in mysterious ways sometimes.
BUT, it could definitely also be a reaction to the Remicade. I'm on another of the TNF-alpha blockers (Cimzia), and the side effects list can look laughably similar to the list of symptoms for the diseases they treat. New or worsening psoriasis, a lupus-like syndrome, rashes, joint pain, diarrhea, abdominal pain. My own weird side effects include constant eye infections and horrible cystic acne. This stuff does some really crazy stuff to our bodies.
Please make sure her doctor listens to her problems. He can either change her to a different TNF-a blocker, or move over to a different kind of medication. I don't know if she's tried immunosuppressants like azathioprine before, but I find that they work just as well as the Cimzia for me, but with many fewer side effects.
In my joint pain flare, they gave me various presciption medications for the pain and swelling (I remember Tramadol being one of them), but I had much better luck with the extra-strength Tylenol made specifically for arthritis. I think it's a little stronger and time-delayed.
I also agree with others -- it's tempting to lie still because of the pain, but that just makes the joints seize up more. She needs to try to move as much as she can, and perhaps gently massage the joints.
The most important thing is that this is most likely temporary. If she can find a medication that works for her, it'll help with all inflammation -- guts and joints alike.
posted by themissy at 2:20 PM on July 11, 2011
So it could be a new symptom of the Crohn's. It manifests in mysterious ways sometimes.
BUT, it could definitely also be a reaction to the Remicade. I'm on another of the TNF-alpha blockers (Cimzia), and the side effects list can look laughably similar to the list of symptoms for the diseases they treat. New or worsening psoriasis, a lupus-like syndrome, rashes, joint pain, diarrhea, abdominal pain. My own weird side effects include constant eye infections and horrible cystic acne. This stuff does some really crazy stuff to our bodies.
Please make sure her doctor listens to her problems. He can either change her to a different TNF-a blocker, or move over to a different kind of medication. I don't know if she's tried immunosuppressants like azathioprine before, but I find that they work just as well as the Cimzia for me, but with many fewer side effects.
In my joint pain flare, they gave me various presciption medications for the pain and swelling (I remember Tramadol being one of them), but I had much better luck with the extra-strength Tylenol made specifically for arthritis. I think it's a little stronger and time-delayed.
I also agree with others -- it's tempting to lie still because of the pain, but that just makes the joints seize up more. She needs to try to move as much as she can, and perhaps gently massage the joints.
The most important thing is that this is most likely temporary. If she can find a medication that works for her, it'll help with all inflammation -- guts and joints alike.
posted by themissy at 2:20 PM on July 11, 2011
Can she get on some pain relief meds (narcotic) in the short term or is that contraindicated by Crohn's?
Also: something I know (unfortunately from personal experience) is that autoimmune diseases run in packs. She could have developed symptoms due to the medication or it could be just a bad reaction. But especially with Crohn's, RA or SLE are common co-diseases - both are responsible for some of the symptoms you're describing.
Keep pushing for answers and solutions from your doctor. Keep moving as much as possible - it hurts but will hurt less in the long run...believe me. And keep supporting each other. Even changing sheets or loading the dishwasher can use up "all my spoons" (as the theory/metaphor goes).
Chronic pain is soulcrushing. Find a doctor who agrees and will do anything to help reduce the pain.
Excellent user name, incidentally.
posted by guster4lovers at 10:50 PM on July 11, 2011
Also: something I know (unfortunately from personal experience) is that autoimmune diseases run in packs. She could have developed symptoms due to the medication or it could be just a bad reaction. But especially with Crohn's, RA or SLE are common co-diseases - both are responsible for some of the symptoms you're describing.
Keep pushing for answers and solutions from your doctor. Keep moving as much as possible - it hurts but will hurt less in the long run...believe me. And keep supporting each other. Even changing sheets or loading the dishwasher can use up "all my spoons" (as the theory/metaphor goes).
Chronic pain is soulcrushing. Find a doctor who agrees and will do anything to help reduce the pain.
Excellent user name, incidentally.
posted by guster4lovers at 10:50 PM on July 11, 2011
Response by poster: No contraindication (although both her GP and her gastro specialist have been reluctant to actually prescribe one), but using Vicodin left over from a previous emergency-room visit has done no more than take the edge off. Prednisone, imperfect as it is, is doing more for her than any painkillers we've tried.
Thanks for the advice, everyone. We're trying some of the smaller changes, and I'm sure the big ones will come in time, assuming the pain doesn't pass first. It's especially nice to hear about the disability compliance law. Hopefully it's not necessary, but at this rate...
posted by Holy Zarquon's Singing Fish at 5:51 AM on July 12, 2011
Thanks for the advice, everyone. We're trying some of the smaller changes, and I'm sure the big ones will come in time, assuming the pain doesn't pass first. It's especially nice to hear about the disability compliance law. Hopefully it's not necessary, but at this rate...
posted by Holy Zarquon's Singing Fish at 5:51 AM on July 12, 2011
Response by poster: In case anyone was curious: Rickets.
Not arthritis, not a medication reaction, not a generic autoimmune issue. Critical vitamin D deficiency. Crohn's is weird.
posted by Holy Zarquon's Singing Fish at 10:52 AM on July 15, 2011
Not arthritis, not a medication reaction, not a generic autoimmune issue. Critical vitamin D deficiency. Crohn's is weird.
posted by Holy Zarquon's Singing Fish at 10:52 AM on July 15, 2011
Wow! I hope that means there's a better chance of relief.
posted by LobsterMitten at 11:18 AM on July 15, 2011
posted by LobsterMitten at 11:18 AM on July 15, 2011
I've heard from some people that rickets can be as big a struggle to correct as iron deficiency anemia. I'm glad you have some answers, though, and that it wasn't the plague of more auto-immune problems. Good luck to her!
posted by hydropsyche at 10:13 AM on July 16, 2011
posted by hydropsyche at 10:13 AM on July 16, 2011
This thread is closed to new comments.
posted by paulsc at 3:36 AM on July 11, 2011