Over the last week I've had to wear a holter monitor for two days and broke out in a rash from the adhesive, had a UTI, my back pain is out of control and now I'm having a PMR flare. My PMR has been very well controlled until I got down to 10 mg. I don't know if its the mg or the stress of everything else. And now my jaw hurts too because I keep tensing it from all of this pain and hot flashes. Oh crap. I am just miserable. Thanks for letting me vent.
there aren't too many people who need encouragement to feel bad.
The best course of action may be to wait until something else goes wrong and add it to the list. But what else could possibly happen (don't answer that .....).
The really nice thing about feeling miserable is that it can only get better ........ (least ways that's my story and I try to stick to it).
you poor dear 😭i feel your pain!
Maybe you have an allergy to the adhesive, was it latex? the rash could have caused a PMR to rear its ugly face.
Isn't it nice to just vent!?! Hope you feel better very soon. Break out the hot pad (for the back), drink up the cranberry juice (UTI), and sit in the freezer (for the power surges), it iwll fix you right up 🤗
I'm so sorry to hear that you are having all this discomfort at the same time. I have hot flashes too, but I call it night sweats. I sweat and then I take covers off and then I get chills. Never at the right temperature. I think I'd feel better if I knew what was causing them.
I'm very paranoid that I have GCA. Are you? The jaw pain would freak me out.
I'm sure someone more experienced will comment on here to help you. I'm still very confused about how you are supposed to feel if taking the right dose of prednisone.
Hang in there. Not knowing what is causing the symptoms is the worst part for me. But we have this great site that helps you to so much. I can't even imagine how bad it would have been had we had PMR before the Internet!
So sorry for you. OK what little advice I can offer (and I am only learning too as have had my pmr for only ('only' she said!!) 3 years, is the following. Re plaster - sounds like you needed a gentle one like Meopore or Micropore or something similar. Re the UTI - many sympathies from me as I am a permenent sufferer, and the only antibiotic I am not allergic to is cefalexin, so had way too many of those. However, my urologist tried urethroal dilation in hospital and it HAS helped a lot. He also told me that pred increases the frequency of UTIs, so damned if we do and damned if we don't! Could your back pain be OA? I have that too, and find it hard to decifer what is the cause of pain - pmr, OA, or what. Have you been checked for arthritis? I imagine those with more knowledge than me will suggest you up the pred a little to where it was controlled, stick with that for a while, perhaps split it with some at night and the rest early morning and ..... breathe, listen to gentle music, breathe, sit in a peaceful forest and breathe!!! Best wishes <3
Yup - I hate the adhesive on the ECG stickers! I was bright red when I finished the last one - the first didn't work and it had to be repeated. And of course the electrodes have to go in near enough the same place - ouch! The nurse was really apologetic - not that that helps much! They also gave me some cream that calmed it down very quickly so do ask.
My cardiologist said if this two day test didn't work I'd have to wear one for 30 days. I can't do that. The itching was awful. I couldn't wait to get those damn stickers off. I've had them on once before for a couple of days and had no problem so this is new.
Thank you everyone who replied. I was finally able to get to sleep last night and have woke up feeling better. So it's 5 am (yes I'm am early riser) and so far so good. <3
You never show an allergy the first time you meet a substance! It can be the second - or the thousand and second that it happens. Antihistamines might help - they do me.
There are also special electrodes for extra-sensitive people which have a different adhesive. I think there are different ones for 30-day monitoring but I might be wrong. I certainly couldn't face them for that long!
Amkoffee - google post-event recorders. A company called Preventice Solutions says they are designed for "patients who are hypersensitive or cannot tolerate electrode adhesives". Other sorts of longterm monitor still have electrodes - these don't. Worth investigating though.
I understand the rash! I have never had allergies in my life...but now, on the prednisone I have to be careful. About 1-1/2 yrs. ago I had a reaction to the latex in surgical tape...blisters, etc...yikes! Also this past year had my first UTI ever. Have had PMR for 2-1/2 years...ups and downs....flares...but in-between have managed ok. It is a roller coaster ride! Wearing the monitor, etc. is stressful....can add to a flare. I am @8-1/2m tapering to 8 using the DSNS method, trying desperately not to flare. Too much activity, too much stress spells trouble for me. And then the sweats at nite.
You will get through this😊...and then settle down again at 10m.
Hope you are using the slo-o-w tapering method. Hang in there!
What you say about too much activity and stress makes a lot of sense to me now. Eileen warned me early on not to be a Duracell Bunny but sometimes I feel so hyper that I forget. The night sweats are just a part of the process, I guess.
I can't add any input more than the discussion 'elders' have given...I just wanted to say how very sorry I am to know how much you are suffering..... I hope you feel better very soon😨
Sleep cures a lot of ills. :-)
Yes, know just how you feel...pain, stress, no sleep, and also the jaw pain, which I found out was clenching my teeth at night, and sometimes during day without realising it when the pain is at it`s worst.....dentist had brace made....cured it....even that relief helps....and maybe more sleep, because it can wake you up....
Hope you improve soon....it`s a battle for us all....Good luck...
aaawww, sweet, thank you 💙