February 16, 2021 at 10:52 am #16261Bailey VincentKeymaster
I have been writing a lot about nerve and joint pain on the forum, and I’m sure it’s getting old. (Or maybe just I am getting old? Is that what’s happening?)
I know that arthritis and inflammation can be a big part of CF, but since we don’t talk about it that much or see it depicted often online… sometimes that feels like a myth? [Like IS it really a thing? Why don’t we talk about it more with our teams? What medications should we be taking? Why do I feel so alone in my whininess?!?]
Despite my sharing about it here (what has essentially been my year of spine, nerve and hand pain), and my significant lack of answers and solutions at the moment, I try to myself that “this is normal” for someone aging with (atypical) CF… at least I think so?
The truth is: I don’t see enough about it and I really wish I did.
I am trying to figure out practical tips to dealing with the increased pain, and so far, it’s a crapshoot. I really love hot baths with Epsom salts, but I honestly rarely have time for them. I also truly love my Theragun (which I got on Amazon for super cheap) but only if used in specific ways, otherwise it backfires. And, of course, nothing helps more than laying on the floor with an amazing playlist, and slowly moving my joints gently in a “movement flow” of sorts. Otherwise, I am truly like the TinMan.
What about you? What helps you? Let’s swap stories and if you ever want to know more about my Theragun or soothing playlists… say the word!
February 16, 2021 at 1:29 pm #16263Jenny LivingstonKeymaster
I’ve had joint pain since I was a young teen, and so often I also feel like it’s a myth! For two decades now, I’ve said things like, “I have arthritis,” or “That’s my arthritic hip.” Statements that are almost always met with giggles or “mhmm, sure”s.
My hands flare up most regularly, which makes any kind of computer work or even phone scrolling difficult. Heat and anti-inflammatory meds are my go to. I also have a set of squishy balls (called “SPRI hand recovery kit”) that is meant to sooth joint pain and prevent stiffness. They have been very helpful, but are specific to joint pain in the hands. When I have flare ups in other areas of my body, I also like hot baths and rest. Slow movement does seem to help, but there are times that the pain feels too powerful to power through.
I honestly don’t have good answers, but I can certainly empathize. We regularly joke about my grandma body in this house.
February 16, 2021 at 4:59 pm #16266Tim BlowfieldParticipant
My wife has had pain in so many ways. Currently back pain but pain in the hip area, legs and other places common. When she had Hyperparathyroidism pain was a feature till the offending ‘Adenomas’ were removed. We believe it developed as a result of the CF causing abnormal Calcium levels in the Parathyroid cells.
She has also been shown to have Sjogren’s Syndrome which also characterized by pain. Sjogren’s is an inflammatory response usually autoimmune but we suspect in our case is a response to the chronic antigenic stimulation of CF.
Osteoporosis/Osteopaenia is another cause of pain too common in CF’ers again most probably the result of abnormal intracellular Calcium.
And then CF’ers have Arthritis, spondylosis and all those degenerative conditions that non-CF’ers get as we get older.
It will be most interesting to compare the incidence of these issues in persons on and not on Trikafta.
Our CF physicians need to be encouraged to gather this information.
- You must be logged in to reply to this topic.