What is a realistic aim?

[ledgemoorlady]

i was diagnosed 4 mths ago with PMR, and I also suffer from longstanding depression and SAD. I had an excellent start on Pred. but my GP was reducing my dose probably too quickly, I think. I got breakthrough symptoms of muscle fatigue and pain after walking about 250/300 yds. Also any normal activity around the house produced muscle pain after about 20/25 mins. This disappeared almost immediately when I stopped.

In the late afternoon/evenings I get cramps in my hands, but realise that magnesium may help this. I am currently on 20mgs pred. daily and have had a very restful day today. Consequently, although I have some hand cramps, the rest of me is functioning pain free, although I know when I go up to bed there's no way I could run up the stairs!

What sort of daily programme should I be aiming at in the way of jobs/exercise? I was a fit 82 yr old before all this started and my brilliant beginning gave me a far too optimistic view of what I can expect! I have a rheumatology appt. in late February, and I daresay I could rustle the pennies for a private appt. if there is anything to be gained by this. I live on my own. so find it quite easy to organise my activities round what I can realistically achieve!

But I really need to know a bit more about how much rest I need, how to plan a realistic rehabilitation programme, and what level of pain is is OK to work thro', and what is just causing more inflammation. Also, what dosage of pred should I be looking at, and how slowly to reduce? I do appreciate that at my age I may not be able to give up pred altogether.

Any help advice will be really appreciated!

Ledgemoorlady

[DorsetLady PMRGCAuk volunteer]

Hi,

I gave you a link to read through outlining what you may expect, perhaps you should read it through again and also read this about pacing yourself -

healthunlocked.com/pmrgcauk......

[HeronNS]

With regard to activity, my meaure has tended to be making sure that after every period of activity I've had a period to recover. Activity can be physical, but it can also include a pleasant meal or coffe break with friends. You will learn how to pace yourself, you seem very aware of the need for this.

I am curious how long you've been at 20 mg. Have you returned to this level after a too fast taper?

[SheffieldJane]

Have you tried one of those artificial sunlight lamps for you SAD? My friend’s condition has been greatly improved by this item.

Has your depression lifted at all since being diagnosed? My mood improved immediately upon diagnosis and taking Pred. I wonder now if it was a sign of its coming, it used to feel quite physical. Don’t leave it untreated, it makes everything much harder. Is there a support group near you. It helps to talk to others in the same boat.

What kind of tapering regime has your doctor put you on? 20 mgs was my start dose and it has taken 4 years to get to 4 mgs.

Pacing your activities is a very personal thing, unique to you. I tend to have a burst of activity and then a rest, I usually still need a nap in the afternoon and go to bed relatively early. On a bad day I may have one small goal, like putting a wash on and that’s it. I have complete rest days if I’ve overdone things or had a journey.

My Physiotherapist runs a bespoke Pilates class for just my husband and me. We have different issues and she incorporates that into our sessions. This can help strengthen muscles and improve flexibility. It maybe too early for you to manage something like this if walking 300 yards is painful. If you have a good engaged doctor, I would discuss your current physical limitations. Paying privately is a lottery judging by people’s experiences on here.

At my worst, PMRPro recommended Norwegian walking poles. They helped so much , particularly on slopes. You look like a serious walker, rather than an old lady with sticks. It was a way for me to increase my walking gradually and even get up a craggy slope on holiday. I bought them, cheaply, on line. Keep us posted!

[ledgemoorlady in reply to SheffieldJane]

Thanks for reminding me about walking poles. I'll dig mine out of the car and use them!

[Whatgrange]

I was so impressed by your succinct description of your symptoms now - they sound so much like mine! I am fortunate in that I do not suffer from depression though. I am female, age 77, diagnosed with PMR 2018. Before I found the forum I tapered gaily on at a fairly fast rate and not surprisingly had a relapse! Now recovering from that at 15mg now and reducing at 1mg pm.

Magnesium seems to have helped my hands. A difficulty I have is to differentiate between PMR pain and ‘trauma’ pain eg a pulled muscle. I can’t take much in the way of pain relief and pred doesn’t touch it. One is much more likely to ‘pull a muscle’ with PMR because of the poor state of our muscles. I have found my physio helpful with this.

I feel that ‘aiming’ for jobs more often than not will prove a disappointment and you certainly don’t want to do that with depression! Look back on the day and be happy with what you have achieved! Even the tiniest thing! Perhaps standing in the kitchen and peeling a carrot!!!!

Very best wishes

[ledgemoorlady in reply to Whatgrange]

My depression is kept largely at bay with antidepressants, but I hate this time of year, with some days still masquerading as summer! I'm better once we get into winter proper. Light therapy doesn't help me unhappily.

[Whatgrange in reply to ledgemoorlady]

I just don’t like short days! My granddaughter’s birthday is on December 21st and I feel as though then we’re nearly in Spring!! Well perhaps a second a day towards Spring!!

[PMRpro Ambassador in reply to Whatgrange]

My daughter's birthday is the 22nd - and we used to be skiing by then. The joys of a country with all this white stuff shining in the sun! It has cured my SAD!

[Whatgrange]

Forgot to mention walking poles! I couldn’t possibly manage without mine! They really assist with balance and also give that extra little bit of momentum.

[Arflane97G]

Not sure I can help but I can certainly empathise! I am 58 and was diagnosed last month - went from walking 5/6 miles a week, enjoying yoga, swimming and Pilates to being practically housebound in about 2 weeks. Now 2 weeks into steroids and managing a walk / yoga stretches every other day. My walk goes past quite a few benches so I can stop for a rest if need be and stop for a mug of green tea in the local park - just great to be outside again and enjoy the autumn sunshine 🙂. I have learned to enjoy what I can do and the importance of a post lunch nap / lie down.

[PMRpro Ambassador in reply to Arflane97G]

That is the perfect way to get the exercise right from the start. Just start to carry a thick cushion for the winter!!!

[Arflane97G in reply to PMRpro]

That’s a great idea 😉

[ledgemoorlady in reply to Arflane97G]

Thanks for your reply!

[ledgemoorlady in reply to Arflane97G]

Thanks for that!

[PMRpro Ambassador]

Like DorsetLady, I gave you links that will help with a lot of the questions you are asking, she has given you the link again. Read them - again and again and again. And again.

Once you feel good on the 20mg, you can try a 2.5mg drop - and stay there for a month at least before dropping again. A 2.5mg drop to 15mg should also work. Then switch to 1mg per month reductions.

But above all, you must remember that the pred is only managing the inflammation and, therefore, the symptoms. The actual disease is continuing in the background. You wouldn't expect to go back to normal if you had flu - and the effect is similar. Any periods of exercise should be matched by a rest. That doesn't have to mean sleep - but using different muscles or sitting reading the paper, food preparation or even ironing will do after walking around not using your arms much.

Only you can work it out - what I can do isn't the same as DL can do and isn't the same as Heron can do and we can TELL you things to try - but you have to implement them. Do something you KNOW won't overtire you and then build up from that a minute or two at a time - go for a walk for a distance you can do, note how many mins. Rest the next day and be sure you have no sore muscles. The next day, add a minute out which adds 2 minutes to the total. Rest the next day. Keep doing that until you find the maximum time you can walk without pain. Stick at that for a few weeks - and then add a couple of minutes again. You have to "train".

But when you say "I got breakthrough symptoms of muscle fatigue and pain after walking about 250/300 yds." is that just in your calves? Or is it general? Does walking a bit slower allow you to walk further? Does that pain go as soon as you stop walking, only to return when you walk again?

And you evening hand pain/cramps may simply be you have tried to do too much with them. If I use a vascuum cleaner for more than a few minutes my hands will hurt for days, it all depends on what I was doing.