hello! a very gapped update. I'd be a terrible blogger.

[hazmatrec]

hi folks!

first and foremost. thank you all for being here. I've lurked and read the pinned things and the signposts and as much as i can find.

it was about a year and a half ago that pain started in my hips, and it was last October when the gp was confident about it being pmr enough to start corticosteroids, and it was only about two days after that when the pain eased gargantually enough that i could walk around the block, put my own coat on, and do the reduced physio at disability north. however. any attempt to drop the steroids dose, even with extra pain med work, and i was back to grinding fire in my joints. so in November, gp decided to proper refer me to rheumy, to get things checked out. in mid Feb, i still had no indication of an appointment. when the gp chased it up, there still was no date set, but also he was told i would need to come off the steroids before being seen. I'm too tired to argue any more. i just laughed and laughed. because i was the one who said if i take steroids before getting things checked out, it will be too late after. so, I'm thirsting down to null. and i don't have to worry about about relapse, because I'm supposed to be in bad shape. i just need to keep an eye on the adrenals. I'm just down to ninemg now. still no date from rheumy. almost no exercise. about twice a week i can dose up and "do" about 2000 steps, the local park/ shop and back, if its a good week. i try and stretch and move around the house, but i feel like such a lump of pain. to top it off, my weakling knee gave out and then my back felt bad, and then i had coccyx pain. when i selft referred to musculoskeletal for the knee, they sent me to a&e to check for cauda equina syndrome (losing the use of my legs). a funny way to describe it - "your butt hurts? go sit on an awkward wooden chair in a&e for six hours, please". it hurts enough that badly, but the time scale's wrong. so, they didn't sort it in a&e, I'm on an urgent outpatient path; mri tomorrow. i hope they find something definitive, because the tailbone still hurts. it's been able to distract somewhat from the pmr/ rheumy waiting, but i could have dealt better with a jigsaw 🤪. plus, they won't look at my knee until they know my spine is going to keep working or no. priorities, huh?

so. we're not sure it's pmr. or we still think it is but the gp wants clarification that involves untreating first. and like me like always, something new has come up in the meantime. which I'll have to remember to get help with when this and then that and then the other is looked at.

i say again. thank you all for being here.

kind regards

cath tyler

[HeronNS]

Sorry to hear you've been having such problems. It's made worse, isn't it, by not being able to get out and about without pain. I don't know if it would help you, but when I injured my knee back at the beginning of the pandemic eventually I found using a cheap elastic brace from the pharmacy enabled me to start walking a bit more, and gradually (along with physio exercises) building back some strength and fitness. Although I know I'll never be a 10,000 steps a day girl again! What I think happens, one thing gives out, or gets injured, or whatever, and that causes a cascade of other difficulties. I hope you find the cause of yours and are soon on the ment. Do let us know how you get on, Best wishes - and good luck! 🍀

[hazmatrec in reply to HeronNS]

thank you! yes, i always seem to be thwarted in my attempts at meagre but vital moving around sessions. when i was about two weeks into reducing the corticoids, i think i let the pain get to me and moved a bit less. so then with the extra weight i already had, i gained just that little enough more. that's when my knee started locking again. and then, walking to 'protect' that is when my back was strange. and now my knee gives way, my legs go numb, and my back seizes. whee. the 13yrold youngling thinks I'm a barrel of laughs, i tell ya. 🛢🐒😳

[HeronNS in reply to hazmatrec]

We'd make a good pair, hobbling down the street! Every once in a while when my hip hurts (I think it's referred pain from my back, plus some bursitis) I find myself walking "funny". I'd like to use my Nordic poles to improve my posture and supply a bit of support, but have found when I do that my shoulder acts up, and can take days to recover. This is very frustrating! As SheffieldJane points out in another thread today it seems just as one finds what might be a solution to a problem another thing pops up!

[Karenjaninaz in reply to HeronNS]

I found that walking like a penguin was very annoying my case. My rheumatologist gave me some exercises that I could do. Leg lifts lying on my back and side leg lifts have really helped so that I don’t walk like a penguin anymore. I just walk slowly.

[HeronNS in reply to Karenjaninaz]

Gosh, was my comment only seven days ago? Touch wood, since my Moderna shot on Monday, well, since Wednesday since I recovered, I've felt like a whole new person! I just realized reading this that I haven't had any hip pain at all, and even my shoulder which has been troublesome off and on for a long time has lately been much better. Long may it last! I even discovered I walked almost 12,000 the other day and expected adverse reaction, but - nope!

However, to respond to your actual comment - I've done leg lifts of various kinds for many years, as they are part of the regimen used to strengthen my core for back problems. For the hip I fairly recently started doing an exercise called the clamshell, got it off the internet, and it really made a difference. I had self-diagnosed bursitis, as that's what my pain matched, and this was a recommended exercise.

I walked like a penguin before diagnosis and treatment, and was doing lots of different exercises at the time as I foolishly believed I was out of shape and needed to try harder. Didn't help, needless to say! I needed pred!