Hello all,
It’s been a while since I’ve been on the forum. I have been knee high in work and I really have been struggling to keep things going in my work, home and social life.
I can’t remember where I got to last when I discussed my treatment, but at present I am waiting for a respiratory consultant appointment. I was to start biologics (secukinumab), but my TB test was positive, so I now know I have latent TB (not to worry I am not infectious) and I need to start treatment for this before I can even begin taking the secukinumab. In the meantime, I am in the land of limbo, I am on no DMARDS, only painkillers and a bunch of other neuropathic drugs I take for my chronic back pain. My body isn’t mine anymore. My feet, knees, elbows, wrist and fingers have a mind of their own and are all painful. I am still working, running the house and crashing by the end of the week, and as much as I would like to put my legs up and rest, this is entirely impossible in a house with kids and a husband. I have made a GP appointment, to see what can be done for me while I wait for the appointment, and I think I may ask for another shot of steroids as it could help relieve some of the pain.
To top this off, I have just begun experiencing a new symptom and I am hoping someone on the forum can help shed some light on this for me. Just over a week ago while showering I suddenly began to feel the shower floor shake beneath my feet. It felt like an earthquake and then it stopped. It happened again the next day and a few days after, but on the last few occasions it felt as if the floor was bouncing. I have seen stars before when I was in extreme pain, but never anything like this. I have told the family but they think I’m loopy. I will be mentioning it to my GP when I see him, but wondered if this was a symptom of PsA or something else someone has experienced.
Thanks for reading my post and I am looking forward to reading your replies. Enjoy what’s left of the day.
Blimey, sure that wasn’t earth tremors?? Failing that, maybe an inner ear problem? I don’t think you’re loopy, far from it, you’re as sane as the rest of us (though not sure that’s saying much!).
So sorry to hear that you have latent TB and that things are such a struggle right now. It ain’t fair! How long will the TB treatment last? I guess the only bright-ish patch in all of this is that the TB has been picked up. I’m meant to be having a second chest x-ray following exposure to TB nearly 2 years ago … was thinking I wouldn’t bother but you’ve got me wondering now.
Oh please, please if at all possible get some rest. My fiendish plan is to tell your husband and kids you’re off to PT, which of course would be a good idea. But even if you do do the PT, add a couple of hours on to spend sipping coffee or sitting in a forest or whatever floats your boat. And even if that isn’t possible and you have to be the party pooper who always goes to bed early, do go for it because, with luck, this ‘survival mode’ won’t be how it is forever.
FWIW I haven’t been able to take a shower for years… The force of the water is just enough to throw everything out of wack. One of those rain heads helps but not much
Hello Sybil,
You’re right I should put my feet up. I just sat down and I can feel the pounding pain of my knees, they’re like 2 bowling balls. I have been going to bed early, by 8 I’m knackered, so I either go to bed or fall asleep in the chair. I’m in my 40’s and I’ve got the body of a 90 year old. Ah well it’s all fun and games. I really shouldn’t complain.
If this isn’t enough to complain then what is?.. complaining isn’t the same as whining… it’s saying your stuff out loud in the hope that someone can help… even if it’s just by listening…
Sounds like where I was a few months ago, minus the quaking shower stall, which is a real baffler.
I hated it, but I had to take a few months off from what I had come, naturally enough, to regard as “the stuff one must do in life.” My wife was very supportive and took on a number of tasks which had always been in my bailiwick. For what it’s worth, there is no question, I think, that your family will have to do the same. I bet they’ll be happy to do it. It’ll probably be harder for you to lay down those burdens than it will be for them to pick them up.
It must be awfully frustrating to be unable to move forward with therapy for your disease. My rheumatologist was quite aggressive in giving first place to addressing the PsA over holding back because of the risks therapy entails. It was a little anxiety-provoking, but I went along for fear of irreversible damage to my joints. In the end, I am glad she took the attitude she did. I’ve managed to give the slip to the side effects, and the methotrexate/Enbril combo has greatly reduced my symptoms, so that I have been able to resume the responsibilities my wife had taken over. It just takes little longer to get them done, since I’m still a bit creaky. Oh, well.
I hope you can get some relief from your tasks and can soon get on to the therapy.
You really should complain, or at least, complain (vent) away if it helps even a tiny bit. This is turning out to be such a long old journey for you and that truly sucks. At least the delay has a reason this time … I’m scraping the barrel I know but maybe, psychologically, that’s a wee bit better than coming up against a brick wall in terms of treatment. If it’s any consolation, my knees were great big things forever … till I started Humira and down they went like magic! Wishing you the same before too long.