Covid 19 worries

[julesster22]

Hello Everyone,

Wanted to give this posting another try now that I am not out the house as much and seemingly just squatting in my own house, LOL. I am now safely out of pains until I do some activity. I started this back in 2017 and now I am on 6MG Prednisone and tried to taper but it doesn't seem to be right for me. I have been on 6mg now for 3 months. I have not seen a doctor since March bc of the obvious! Now that things in my state are opening up the counts of affected people have increased in one of the highest day yet. I have never felt so much fear in my heart as I have during this time. I was able to work from home, but now on a 90 day furlough.....so now I have just my thoughts and my sweet dog to keep me company. I have picked up a small job that take me outside, to do lawn work. My partner has completely taken care of me with her soft heart and wanted to take my pain away. As if! So I feel I am stuck and there is no movement now. Every time I try to taper the pain in my right shoulder returns and it takes a couple of days to go back to no pain. I worked outside the other day, i was laying down pine straw for 3 hours....I thought I would be destroyed but taking some Naproxen helped me through. HOW or What can I do? Any advice or am I doing what my body allows?

[PMRpro Ambassador]

What you are doing is correct: you are not reducing relentlessly to zero, you are tapering slowly to find the lowest dose that gives the same symptom relief the starting dose did. You have done really well to get to 6mg - and to be able to stick there given the stress levels you are obviously under. Plus doing physical work - often that means people need a bit more pred to cope with it.

Just stick at 6mg for now - this too shall pass and then you can consider trying again.

[SheffieldJane]

Hi julesster22. It is hard isn’t it and a fearful time? I am glad you’ve got a loving partner and a dear little dog.

You are at the tapering stage that does seem to present real difficulties for a lot of us. Our own Adrenal system has to wake up now the dose has dipped below what is required and that can make you feel pretty awful. I think the disease itself has taken a toll. Our muscles have been starved of oxygen and react badly to physical work unless we are very careful in pacing our activities. I got stuck at 7 mgs for a year. I kept trying to taper but my symptoms would come back. 7 mgs was what I needed for a long time. One day things just felt different and I managed to get down to 6.5 ( I used a pill cutter on a 1mg tablet. That was the sticking point but I did manage, very gradually to get to 3 mgs.

The work you have taken on does seem to be very heavy - this won’t help your recovery I am afraid. It is interesting that your pain is in one shoulder, rather than bilateral. I wonder if you have injured yourself or have developed another condition? This would be worth exploring with your doctor. If you need to do this job, then you need to find ways to pace yourself and actually refuse some of the really heavy stuff.

If 6 mgs is what you need then that’s your optimum dose. Try not to stress too much about it. PMR can take years to resolve.

Naproxen is an anti-inflammatory drug isn’t it? They are not advisable with Pred and can cause stomach bleeds. Something has to give and it shouldn’t be your health and well-being.

Try to ration the news you access. It can really make things feel dark. This will pass and most of us will be just fine. 🌷

[Julesster84 in reply to SheffieldJane]

What to take for extra exertion? I cant find Tylenol which was what the rheumy suggested, just trying to be smart and not harm myself, as I sit for months waiting for people to take heed to the advice of doctors not our leader! I feel really good health wise and no pain, just wish I could do more like all of us! But I know I am blessed and just need to slow down and enjoy where i am in this life. I am so happy inside....just wish I could drop some weight and get my endorphins back! Cant do tread mill at all...everything hurt after that.

[Hidden in reply to Julesster84]

Happy inside is the best kind. ☺️

[PMRpro Ambassador in reply to Julesster84]

Start with just 2 or 3 minutes. Rest next day and if that is OK, add another minute. Keep adding 1min at a time with a day off between. It sounds slow - it will soon mount up! If it were ordinary walking I'd start with more and possibly add more each time - but a treadmill isn't normal walking, it is harder.

[SheffieldJane in reply to Julesster84]

That came across actually, your positivity. I found myself envying you a bit. You can do this you know. You are just impatient to be well, which probably means you are getting better. People on here swear by cutting out the carbs for the weight gain - something I haven’t had the will to achieve except in fits and bursts.

It must be hard hearing your news at the moment. I can imagine it adds to the sense of insecurity. We’ve found it best to keep off politics on the forum. I do hear you though. Is Tylenol what you call our Paracetamol? I get it prescribed. Heat can be a big comfort - even an old fashioned hot water bottle. Pace yourself though and have that shoulder checked out.

[Julesster84 in reply to SheffieldJane]

funny enough, i went to ortho and he wanted to operate on my shoulder and then it moved to the other shoulder.....so now what? LOL

[SheffieldJane in reply to Julesster84]

That sounds more like a PMR type thing. Mind you when you save one joint the corresponding one can start to have problems. I get it in my knees, coming downstairs sideways.

[PMRpro Ambassador in reply to Julesster84]

A bad shoulder that then spreads to the other - very likely to be PMR ...

[nuigini in reply to PMRpro]

This was one of my first symptoms. Crazy emergency room doctor diagnosed torn rotator cuffs!

[Constance13]

"Covid 19 worries".

I am a little concerned about the opening of lockdown here in Germany. We can do almost anything from Monday - family visits in hospitals and care homes (limited), churches, shops, schools, restaurants, hotels (limited), etc etc. Distancing is a priority however.

Too soon????

[PMRpro Ambassador in reply to Constance13]

Just because you CAN, doesn't mean YOU have to ...

[Constance13 in reply to PMRpro]

Had to laugh! I know that - just worried about the the others. It really is a rapid release from lockdown. A slower, bit by bit, release would have been more sensible.

[PMRpro Ambassador in reply to Constance13]

Just let them get on with it - with a bit of luck the R0 is low enough to allow a buffer. And if it doesn't work - it will be 2 or 3 weeks backwards ...

Given everywhere else is the best part of 2 weeks behind Italy I do find it strange they are so keen to get on with loosening the restrictions. But it is hard to know what to do regionally - if travel is unrestricted you may struggle if saying London is OK to get on with x, y, z but Manchester isn't because they are 2 weeks behind - there will be idiots who head for London ...

[Constance13 in reply to PMRpro]

It's the idiots massing to the coast - even those filling " our park"!☹️🧐. Mind they are very disciplined about distances.

[PMRpro Ambassador in reply to Constance13]

Mutti has spoken though: theguardian.com/world/2020/...

[Constance13 in reply to PMRpro]

Good old Mama!😂