I have been having a flare for a bit (Jinxed myself by using the R word - remission!).
I’ve noticed for a few years that when this happens I get ‘other’ musculoskeletal pain -migrating, doesn’t seem to be in a joint, doesn’t respond to pressure (so not typical fibro), but also not shooting or shocks, so not typical neuropathic. The best way I can describe it is like a discomfort, that has me continually wanting to move to move away from it (uncomfortable enough to disturb sleep).
Has anyone else had a similar experience and have some sort of explanation? I’ve been reading a lot about pain, and whom what I can see, it seems likely that during a flare my pain systems are getting confused. Has anyone else tried biofeedback or any other methods for this? I use mindfulness, which certainly helps during meditation, and some of the time outside meditation, but feel like there is another re-calibration needed.
Just picking up on that interesting phrase ‘wanting to move away from it’. I need to glue myself to the sofa in the evening in order to watch a TV programme all the way through or to hold a conversation because otherwise I just get up and pace around the house. I’m always fidgeting. Yep, I think that’s about wanting to get away from the pain or indeed my own body, if only I could! Not sure if moving stops the discomfort (which is often quite low-level, if extensive) but it takes my mind off it. So no answers I’m afraid, just that I can relate to what you’re saying here.
I get this too… it’s like with the kidney stones… if your moving the pain is less… Except less noticeable since it’s less pain but all over… Walking around makes the other pain worse though… It makes me feel like going crazy… wanting to move but not being able to move at the same time…
Yes, you’ve both kind of nailed it - you just want to keep moving to distract from the pain, but… if you move too much, too fast, too hard, then the inflammatory joint pain goes nuts!!
I’ve been (relatively) good for a long time (spending a lot of energy managing, but the have been managing), but just in the last few weeks my TMJ and neck have flared, and my management has hardly made a dent. I swear that big flares associated with the spine are some special rule unto themselves that turn a bit of brain fog into… “I’m sorry, I forgot why I came here, what my name was, and and why I’m looking for the sticky tape”. “Oh, it’s my house, that explains one thing”
25mg of prednisone per day and I’m still marginal on being functional, still with low fevers. I’ve got a rhuemys apt in two weeks, a pain management book on the way, I’m doing my meditation and moving the best I can…
Yes, movement does seem to keep the pain down–I think it’s the stiffness that we are trying to get away from maybe?
I always marvel that my husband can sit around and watch TV all day! When I get up in the morning, at first I think, oh, I’m just going to sit around all day and “take it easy”. But, that is so impossible! If I sit for 15-30 minutes in the morning, that’s the max!. Oh, sure there are breaks throughout the day–my feet couldn’t stand to stand all day–but not terribly long ones. It is good to keep our minds and bodies as busy as we can tolerate!
I used to have the HARDEST time with pain like you describe at night. The most comfortable way for me to rest without feeling like I was going to explode from the uneasy feeling the pain gave me was to pack two pillows tightly against my stomach and then roll over them so I was in a ball with my head down and my knees under me holding my weight. I would then rock back and forth. The movement part of this contortion was the most important.
Now that my disease is not well managed (in the gap between meds) I find myself jiggling my legs at work. All. Bloody. Day. Long. I wonder whether my coworkers think I have bladder issues! I take gabapentin for neuropathy in my feet which has taken away some of the nighttime issues but the general discomfort and need to move has me wondering about how overloaded by nerves must be feeling. I assume from inflammation?
I know what you mean! My co-workers (except direct boss) are unaware of my arthritis - I think they think I’m very odd at times!!
My GP has prescribed Norflex (orphenadrine) as a muscle relaxant due to the teeth grinding etc, however I don’t seem to be able to google a good handle on how it works, whether it is sedating - or what it will look like on mine site drug tests, so I’ve put it aside for now. At least one week without steroids - today already I was struggling to get a sentence out, hopefully I’ll bounce back soon😀
“Wanting to move away” from the pain… That is an excellent way to describe how you feel when you get that that deep down inside, unreachable, unable- to- soothe pain.
Nope, after falling asleep (properly asleep - like snoring - after I went to Bed at 8.15, and sleep at 8.20pm last night!) 4 times sitting at my desk between 12.30 and 2, then again twice on the freeway on the 1 hour trip home from work, I decided to resort to steroids again. I dunno - I know steroids are bad - but until I can change my work / home commute triangle, I’m struggling to understand the risks vs a debilitating or fatal car accident (which is only around 5/10,000 per day I think, but unclear how badly that is raised by lack of attentiveness / micronaps).
Ugh. So sick of this I’ll just get a big policy and never mind!
Yes but sometimes they are the only thing that will get you through your work day. I wish I had the luxury of just calling in for a few days at a time and not resorting to prednisone. But that’s not my life. So I power through with a little extra help and then crash and burn at home at night!
Okay then Steroids are bad. BUT the pendulum has swung once again… From “miracle drug” to “devils drug” to “Oh I guess low dose (>15mg) is okay” My wife who has severe asthma at times (not so severe she is willing to kick the cats outside so she gets NO sympathy from me) LAUGHS and mean LAUGHS hilariously at my steroids… I even hear as she is taking he 50mg MORNING dose and I’m taking 10 “why bother”
Lets not deamonize what saves us Read this STUDY and relax… They are even finding radiologic improvements with low dose steroids.
My rheumy is routinley prescribing 3 - 5mg/per day for all his arthritis patient and has been doing so for a long time (hes 75 so I do mean long time) with not a single adverse report. I’m no talking frequent bursts although they are much better than the old tapers not much in use anymore.
Thanks guys, I guess the key is to take a deep breath, and worry a little less about what might happen.
At this stage 25mg bursts are barely touching the sides, but it does seem to be cumulative, so maybe I should talk to my Rheumy about a permanent 5mg dose.
That’s really interesting about the 3-5 mg prednisone. My 92-year old mom has been on low dose 3-5 mg since her mid-70s when she was diagnosed with polymyalgia. They tried MTX but she couldn’t tolerate it, so she took prednisone. After the polymyalgia went into remission, she continued the prednisone but at a very low dose. She’s a very healthy 92-year old and the little bit of prednisone, I’ve thought, keeps her more alert and feeling well. Maybe we all should be on low-dose prednisone!
