Head in Sand...

[tempusfugi]

I don't know what to do so thought I'd be wise to seek advice on this knowledgeable site. My PMR journey started a couple of years ago, since then it's been a bit up and down, mainly because I developed Carpal Tunnel Syndrome (CTS) which somewhat confused the issue.

A year ago, my Rheumy reported that I may have mild CTS: since then, after tests, it changed to very severe CTS in both hands, leading to sleepless nights and loss of appetite. This has now been remedied by having operations to release the median nerve in both hands. I still have pain in some fingers - same on both hands - but was warned this could be the case, because of severity. I am now free from the worst pain and am sleeping/eating again, as normal, thank heavens.

While the above has been going on, I have been slowly reducing Pred. Since January though, I have been stuck on 9mg for 5 days/week and 10mg for 2 days. I don't feel able to reduce further because I've felt muscle aches and pains which, though not dramatic, have warned me not to go fully onto 9mg or to move to 8.5mg.

Recently, I've suddenly been more active - operation on left hand, brother coming to stay to help me out, hair appointment, meeting up with friends which included an overnight in hotel, back to hospital for removal of stitches and dental appointment. More than I've done for months, to be honest...and yesterday I went for a 20 minute walk with a friend. Not much, one might say, but we went for a coffee afterwards and I found I could hardly get upstairs in the Cafe plus when leaving, I seized up and hobbled off, bent over like a 90 year old! (Apologies to any 90 somethings - I know you're not all as I describe)!😊

My rather outspoken friend told me I wouldn't be going anywhere if I 'continued to walk like that' (after I suggested that I was thinking of visiting somewhere later this week).

Sooo, what to do? Should I stay where I am Pred-wise or increase to, say, 15 mg for 2 weeks then drop down to 10 mg? Am I heading towards a flare if I carry on this way, allowing the dripping bucket to overflow. What do you wise ones think? I'm supposed to be going away next Monday to meet up with friends (another overnighter and travel by train). Should I cancel on this occasion? I wonder if I should have increased earlier but the CTS has confused the issue, I'm afraid. Most grateful for your thoughts and apologies for the length of this post.

[DorsetLady PMRGCAuk volunteer]

Would be sensible to follow flare protocol - and yes probably wise to postpone upcoming visit.. disappointing though that might be.

Between now and Monday is a bit quick for you to feel well enough I think .

Guess you know the procedure- but if not-

healthunlocked.com/pmrgcauk...

PS sticking your head in the sand is never a good idea… for all sorts of reasons… 🧐 which I won’t go into…

[tempusfugi in reply to DorsetLady]

Thanks DL. Will check out the link and avoid the sand! Just needed to hear what I'm thinking!

[PMRpro Ambassador]

I don't think you are heading for a flare - you are already there! I think you have your message at present that you need at least10mg and you need to treat it as a flare first. And you need to remember the pacing lessons. You can do lots but you can't burn the candle at both ends.

Reducing when you are already dealing with other things rarely ends well. You should have got over the CTS thing first.

[tempusfugi]

I know you are right, PMRpro. I'll start the flare protocol tomorrow morning.

As regards the pacing lessons, I DO understand in theory, of course, but...when it came to putting it into practice, I think I've probably been so relieved to get through the CTS, that I started to do things that I've put off for months...

Yes, agree I should have put reducing to one side while dealing with CTS, but it was slightly more complicated than that. I saw a rheumy for a second opinion about the pain in my arms (and hands) earlier last year and he declared in favour of PMR. Told me to increase Pred and slowly come down again.

It wasn't PMR but searing nerve pain along my arms which eventually became clear. That's when I should have stopped the reductions, I know that now. Ah well, I suppose it's all hard learned experience😒