Is this my body?

Hello beloved pmr/Gca friends. Maybe it is a bit of a silly question among much more serieus stuff. On one of the first warm and sunny days my friend invited me for a cycletour and eating out somewhere. He suggested a 30 km route, with everywhere shortcuts, in case of feeling tired or in pain. We had a lovely day, and I even said " I am on my way towards recovery." Next day fatique and pain, not surprisingly, but it was the price willing to pay, day 3 and 4 still in pain, day 5 was okay and back to normal. I hope to learn from you, since there were no red flags or warning signs, How to build up strengh and not overdo things. Next cycletour will definitely be shorter. Wish you all a Good weekend, the warm weather be beneficiant, Aletta

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  • Hi Aletta

    Well, this sounds 'normal' with PMR! It's good to get out in the sunshine and do some aerobic exercise, but you must be aware of the 'catch-up' period afterwards (fatigue / pain / stiffness) which can last for a few days if you work your muscles a little too much. I know this experience when I do 3-4 hours' hard work outdoors on the garden or house.

    My analogy is that, with PMR, the body's 'energy battery' is only about 50% of normal - and also takes longer to re-charge itself. So, it's important to pace your activity, not do too much at one time, and allow more time to recuperate than you would usually.

    That said, if you feel 'nicely' tired after exercise (not 'deathly' tired!), it must be good for you, and perhaps a sign that you're getting better. Moderate, regular exercise is good for the body AND mind, especially if you enjoy it. And, I think the body also synthesises Vitamin D from natural sunshine (?) - that's good for you too!

    Now, it's a warm, sunny day here in the UK so I'm off to do some 'serious' car cleaning - my favourite hobby ;-)

    Have a good weekend all!

    MB :-)

  • Thank you M B , your answer makes sense. Hope you are nicely tired and the car is clean afterwards.

  • Thanks Atella, like new again now - and a little sunburnt too :-)

  • Sounds normal to me! In PMR your muscles aren't able to signal you are asking too much of them - so the DOMS (Delayed Onset Muscle Soreness) tends to be worse - and then takes longer to heal. Training involves exercise causing tiny tears in the muscles which then heal leaving stronger muscles - for whatever reason it doesn't work as it should in PMR. So at the time you feel OK - although sometimes fatigue will hit like a brick wall! When that happens - shortcuts don't really help! It happened to me on a ski run, about 2/3 of the way down. That last couple of hundred metres to the lift was like climbing Everest even though it was downhill! My legs just didn't want to do anything, much less ski!

    That's why I always say start really small and build up slowly to find your limit that leaves you sore next day. Always leaving a day between for recovery. Doing it that way you don't have the horrible 4 days of pain, just a little bit which is probably what you are used to. Unfortunately it takes some weeks to get to what you feel is a more normal amount of exercise but you will get there. I found when skiing it was essential to do short runs with the rests on the lift - I couldn't do the same distance as 3 short runs as one long one, I needed the rest, sometimes a bit longer than just the lift. Can you plan more rests perhaps?

  • I agree PMRpro, thanks for your very expert advice as usual.

    Talking of exploring our physical limits, I asked my Rheumy if I would be able to play the Double Bass (a large, heavy musical instrument) when I recover from PMR. He replied with excitement, "Yes, Mark, of course!" I said "That will be a miracle, I have never even touched one in my life so far..".

    So miracles CAN happen - despite PMR? :-/ :-D

    MB :-)

  • Have you put it to the test yet?

  • Maybe a hunt around the local charity shops (again..) tomorrow? ;-)

    Funny thing is, I'm a great music lover (all types from Latin Jazz to the Modern Classics) and family genealogy suggests that I might be distantly related to the famous 20th century English composer Sir Ralph Vaughan Williams - who is one of my musical idols. If proved, that WOULD be a miracle - and could explain a lot :-)

    The Lark Ascending and The Wasps overtures, Dum de Dee, de Da etc....

    I'm in Heaven already on a Friday evening! :-)

  • Do you think you'll be allowed in? Living in Italy I find the concept of the other pace more attractive.

    Rumour has it the Italians run Hell (logical since the RC church invented it to keep the mortals in order). The heating system is broken and no-one will repair it today - domani, domani - so the temperature is pleasant. The food is good - not endless manna, you don't have to pray as much so no sore knees nor sing eternally - no sore throat.

  • Do you mean the charity shops or Heaven PMRpro? :-D

    Fond memories of visiting Italy from many years ago, especially the food, culture and a more relaxed lifestyle than the UK - although maybe not so 'relaxed' in a post-Brexit EU world? But better not to get onto politics or religion here..

    As a kid, I was a diligent choir boy at my local parish church (C of E) in North Devon - but later got the sack because the 'esteemed' choir master said I had (q.) 'Van Gogh's ear for music'. 50 years later I'm still working out what he meant, and also why he often ritually 'punished' many young boys by giving them 'dead legs' (via a well aimed kick) and 'chinese burns' on their wrists. So much for choir masters, but I'm not cynical despite all of this!

    Hey ho! :-D

  • 😳

  • Hasn't changed greatly with regard to relaxed. Even though I live in the more disciplined Germanic north, the men of the village are to be found sitting outside the pizzeria in mid to late morning with a glass of wine. The guy who runs the village ski hire shop sits there and nips back to the shop every 10 mins or so on his bike to be sure no-one is waiting. His old premises were much more convenient - he could see it without moving far!

  • The lark ascending reminds me on my 'trip' to Santiago, it was early spring, just as we are enjoying now, and in the fields of northern france there they were, the ascending larks making me intense happy.

  • Dear Aletta, Vaughan Williams' 'The Lark Ascending' is a truly ethereal, magical piece of classical music, and I recommend it if you want to re-capture such memories. It makes me want to cry with happiness every time I listen to it... :-)

  • I agree, did listen at least a hundred times. The Philharmonic with a.o. Yehudi Menuhin lifts you up, like a lark. So even the Dutch appreciate English music. 😎🎧

  • Ahh, it's good to know :-)

  • de Compostela I assume? I'd love to go - won't be pilgering though...

  • Yes but it is 20 years ago I Walked from Holland to Spain. If now I had to consider an oxygen mask as Slosh suggested 😳 And if you go there try to do it in wintertime, it is overcrowded now.

  • Where isn't overcrowded nowadays! I wouldn't go to Spain in the summer - but am hoping to persuade my husband we could spend a few weeks there February/March. I've given up trying to get him to use our camper in winter but now we have access to reasonably priced apartments - even he can't object to them in winter!

  • Wish the both of you a very special time in Galicia

  • Hi PMRpro ..Santiago de Compestella is Beautiful and The Catherdral has a certain Peace about it My Late husband came from Monforte -de -Lemos..Lugo.Galicia which also has a Cathedral . Monforte is where he's interred for the last 21years..Santiago was one of the 1st places i visited on my 1st trip to Spain aged 23years old .Galicia at this time of year is awe inspiring.I can't travel now due to my PMR and my legsand the exhaustion , l saw Dr Hughes yesterday and i have an infection in my legs so i'm on Antibiotics and a Depomedrone in the Butt for the muscle pain and to TRY to get down lower on the steroid before my next Appointment on the 4th May. I continue to fight on and i managed to go to the Chertsey PMR/GCA meeting last Tuesday .. If I could go Galicia would be the 1st place on my list . I try everything i can and hopefully on Tuesday i'm back to my Osteopath for Gentle massage and hopefully Ultrasound to upper arms and shoulders,a break from Bowen at the moment . Pete and l are hopefully going back to a River Lodge at Stratford on Avon in September so as he can have a weeks fishing and i can relax with my Puzzles and my Books. Hope you make Galicia..Best Wishes trish 29xx

  • 😂😂😂

  • O poor you standing on a snowy hill with your "batteries " empty. It must have been a hard way to learn your limits. Thank you for the explanation of DOMS, the more I understand, the better I can handle pmr. By the way you asked for my t-scores and now Gp told me, they are 0,2 and 0,6. And yes I Will step of the bike moreoften.

  • I ment minus 0.2 and 0.6

  • Those scores are brilliant. Fancy your GP planning to make you take AA without even checking!

  • And he did not even bother to apologize for it!

  • I hope he's secretly ashamed and is more careful with future patients.

  • If it was not for you and the other wise pmr/gcamembers I was on AA now so I am gratefull to have found the forum.

  • This and the Patient forum have definitely been a lifeline for me. :)

  • A too-familiar story with GPs HeronNS... :-(

  • Oh, mine was going to be the same, but....

  • Absolutely superb! I have to say - I'd ask what he thinks and would he try to get someone to take it without checking again. But then, that's me...

  • I rest in anticipation of a day with my grandson, it seems to put energy in the bank to spend the next day. I mean a really slothful day of lying around with my always busy granny's disapproving voice ringing in my ear.

  • O, there is a bank, can I open an account too? But maybe soon there will be red Numbers for me.

  • Just finished clearing up after my grandson's departure. Exhausting yes, trying out his roller skates meant I had to do a few mini sprints to catch up but it's worth it. And how we appreciate the peace afterwards!

  • Well it's more of an unreliable hole in the wall really.

  • Hi

    I rode my horse on Monday, she is usually pretty good, but Spring is in the air! So she pulled and messed about, a good canter settled her ..... I was fine then. But later in the day and for the following 4 days I have been very sore.

    I would not have even thought about this a few years ago, now it causes major discomfort, but the mental pleasure seems to outweigh the discomfort. But daily riding is certainly out.

    I do wonder though if the constant stress on my muscles is hindering my recovery?

    We have to try and have a little enjoyment though :)

    Best wishes to all

  • I don't think it will hinder any recovery - the illness is nothing to do with your muscles, they just demonstrate it! But if you start with a short ride on alternate days and then build up slowly you probably WILL get back to being able to ride for a decent amount of time and daily.

  • Oh thank you PMRPro, do you think I should be more or less painfree (recovered almost fully from previous ride) before riding again?

  • Difficult to say - if nothing else, if your muscles still hurt it won't be very pleasant riding will it? It always strikes me as fairly hard work! I've never ridden myself but did work with Riding for the Disabled for years.

  • Each to their own I guess, I know you ski - would terrify me!

    Its a little like if you have overworked at the Gym (distant memory), when you work out again it loosens the muscles - but I am not sure if that would work the same or just compound the issues following the ride.

    I suppose its Trial and error - but as long as the soreness does not cause a flare, I guess that what terrifies me ......

  • Don't ski now. Occasionally I regret having decided to give up. Far too expensive - and crowded with tourists who think they can ski but can't. No natural snow until almost the middle of January this year - December was rather limited given the price! And since the beginning of March we've had temperatures well above freezing and strong sunshine :-(

    I don't know at what stage you get to a bit of exercise will loosen up the stiffness - it is trial and error to identify it I suppose.

  • Oh thats a shame .... but I can understand your reasoning.

    I have had my horse for 20 years since she was a youngster, so part of the family. But I wont get another when I lose her, too expensive and I am too old and achy.

    So overdoing it a little should not cause a flare?

  • It may make you sore - but there is no reason I can think of why it should make the actual illness, the autoimmune bit underlying things, get more active which is what happens in a flare. It is chugging along in the background all the time at some level. Or you reduce the pred too far and uncover the rocks so to speak.

  • Thank you - your comments and knowledge is always much appreciated.

    Have a great weekend!

  • Yes Lesley, 'everything in moderation' with PMR? :-)

  • Your one to talk, car cleaning isn't moderation, only saying!!!!!! I pressure washed the driveway yesterday ready for the return of my SLK 200 after a little shunt (not my fault) despite my wife suggesting that will be over doing it. To day I felt deathly. Happy days.

  • Ha, Pete!

    Funny you should mention your SLK. I'm a great petrol-head and long-term Mercedes fan. After 7 Mercs including a couple of E55 AMGs (lovely!), I now have a slightly elderly but beautiful S 320 CDI Limo that takes an hour to wash properly due to its gigantic proportions. At nearly 17 feet long it overhangs a 'normal' parking space at the supermarket (a bit embarrassing when you pop in for a loaf of bread..). But with nearly 50 mpg on a long run and supreme comfort, it's just too good to let-go of.

    I wish I could fit into something smaller and sporty like your SLK, but due to being quite tall AND the dreaded PMR stiffness, it would be like doing a contortion act at the moment :-/.

    My strategy? When I use the 'S' locally, I pretend that I'm just a chauffeur and wear a 3-piece suit and tie with accompanying peaked hat (only joking). Weddings and Funerals maybe..? Now there could be another string to the bow! (fiendish smile etc):-D

    I don't know if any of the 'girls' here will relate to this obscure bit of this thread, but for some of us 'boys' at least, a car is more than a means of transport.

    As for pressure cleaning driveways, don't tell me about it. Did it today and, like you, I'm sure I'll pay for it tomorrow!

    As you say, Happy Days despite PMR - and Business as Usual?! :-/

    MB :-)

  • Wrote a reply Mark but somehow it got shunted to another position, its amongst this blog somewhere

  • Found it Pete.. :-)

  • Only "nearly 50mpg"? I'm upset when it falls below 60mpg! Have managed 70mpg - even with mountains in the way...

    I can fill up in Innsbruck and get to Calais on a tankful. Wouldn't try it from here - far too expensive!

  • Ha! Trust you to go one-better. In its defence, the 'mighty' Merc is a massive and powerful car so 50 mpg is pretty good considering. Just as well as it costs about £100 to fill-up with diesel - ouch! ;-/

  • Hi Leslie....I am a "horsey" person also. I have two wonderful Quarter horses that I have trained myself and have had them both since they were very young. My passion is riding bareback which I have done daily for years. Now with PMR 6 years + it is getting more difficult to carry on this activity... at least as often as I would like to. Like you , I pay dearly the day after and even longer sometimes. The joy I receive makes the "day after" soreness worth it .... at least ...usually. I always wonder when will this dreaded disease ever leave !? I was very relieved to hear that PMR pro thought that the riding would not cause damage to the muscles or cause a "flare" because I too have had the same concerns. I will follow for myself the sensible advice that she gave to you about slowly building up my muscle tolerance so as to be able to ride more often. Riding is a passion/ love that I will not easily give up! You all that participate on this site have made living with this illness more tolerable for me.... thank you from the very bottom of my heart ! Suzanne

  • Hi Suzanne,

    I understand completely, my daughter and I share two andalusians, I bred the youngster 8 years ago.

    I have been trying to increase my riding but there seems to be so many variables. The cold in winter hurts everywhere, especially my GCA. If she is jarring when she spooks or dives in to canter (we have a beautiful forest we ride in), there again I suffer more. But its been my life for so long, I try and do what I can. My daughter is great and does the mucking out, its like having my own personal groom.

    I agree the advice we get on here is invaluable and listening to others experiences.

    Sometimes I feel I am making the whole thing up! But then need another nap ............

  • Hi Lesley it was very nice to get your reply. You and I have 2 things in common......the love of horses and ...PMR. The first being a joy, the second being a most unwelcome disease.

    I too , need help with the barn chores and horse grooming. I absolutely would NOT be able to care for my horses because of the limitations of PMR , if it were not for my horsey "helpers" !

    It is indeed frustrating to have muscle fatigue and soreness from an activity that you have done your whole life so easily. I live on the coast of Calif. so it does not get too cold here but quite hot at times . It is the heat that will get to me now with the PMR...between the extreme sweating & feeling weak I now just pass on" those" days. When I do finish a ride & go in the house my groin muscles "quiver " for an hour or two.... crazy !!

    Where do you live Lesle ?

    Suzanne

  • Hi Suzanne I have messaged you 🙂

  • Has anyone tried Oxygen therapy - like hyperbaric. Get more oxygen through the vascular system and yo muscles??

    I was already sick on my cruise (but undiagnosed) - went snorkelling -,breathing deeply swimming around for two hours straight - thought I would be exhausted - but was literally the best I have felt for years!!

    I am normally a shallow breather though anyway.

  • When this happens to me my husband always tells me I was too generous with my spoons, what makes us laugh.

  • My friends keeps telling me I had far to many spoons and now I am back to normal ( but you don't look sick)

  • Hi Alerts

    Like you I just want to get up and get on but find you have to be patient and run the course and take things a day at a time and build up to exercise gradually and carefully.

    I myself could not wait to get back to work but I'm having to do it at gradual phased in pace so take care listen to your body it makes a difference.

  • Before the Merc I had a BMW Z4 but Jane wouldn't drive it, said it was too powerful. So when the PMR started I couldn't get out of it due to the stiffness. So sold it for a 4x4BMW X3, I could sort of fall out of that. 2years intoPMR I convinced Jane it would be fun to have a spirts car again, hence the Merk. My sons say old men shouldn't drive sports cars. Well I dont drive it much because lcan't sit down long enough. Polishing it makes my shoulder complain so I do it bit by bit. Your list of cars sounds great. Aren't us men so fickle. Have fun.

  • Don't start me off about cars Pete, I'll be here all day! I well remember at the start of my PMR (before going on the tabs) hardly being able to open the car door let alone tumble out. As for 'old' men and sports cars - why not, you're only here once! :-)

  • Thank Mark, I agree entirely.

  • Being on the small side I detest the SUV/4x4 things - I can't climb up into them. Sports cars would be fine - but they are so impractical...

  • When I was a consultant with Nissan GB at the time of the launch of the original Qashqai and Juke, the analysts predicted that they would appeal to the under 30's 'lifestyle' set. It turned out that more were sold to the over 60's because, as one 78 year-old customer told me "It makes me and my wife feel young again - and it's nice and high up". Little did he know about the appalling rear vision, blind spots and handling like a bread van! But then again, I am a little biased.

    Bless.. :-)

  • Don't you just have to look at them to see they will handle like a loaf of bread? Never mind as well as a van with wheels...

  • Took the words right out of my mouth PMRpro - plus aerodynamics, 'chunky' tyre replacement costs, I could go on and on.

    But better tread carefully as it seems that most of the population drive 'SUV's nowadays and seem to like them for whatever reason! Sport Utility Vehicle (origin of term, guess where..) - I've always struggled with this motoring design oxymoron, a triumph of marketingspeak over functionality maybe? Give me a good old fashioned Volvo or Mercedes estate anytime (or even a Cortina).

    That's it, I'm showing my age now - and my motoring prejudices. Bad, very bad :-/

    Mr Grumpy petrolhead from Weston super Mare ;-)

  • Cortina????? Good grief man - Found On Road Dead...

  • Impractical yes, but they are so much more fun if you see what I mean (qualcos'altro) Jane however agrees with you and would much rather have a normal car, took a lot of convincing her to get the SLK so I have promised to take her to Venice in May for a very special birthday. Hope I can cope with the dreaded fatigue....

  • This site seems to jumble replies up, or is it me?

  • Don't worry Pete, got it! :-) Yes, the site does seem to jump about sometimes....

  • Should be a great trip in a lovely car - hood down and shades on..? Cool or what?!

  • Can't use a car in Venice.

  • Not fair.. :-(

  • Oh you are AWFUL, but I LIKE You...shove

  • My young and very pretty neighbour recently bought a Mercedes cabriolet and was showing it off to me last week. I said to her: "I bet it's fun driving with your top down!" I don't remember much after that - just to say my black eye is healing nicely ;-) :-D

  • Nice one, Oh you are...etc...

  • Oh no - don't get me wrong - if I were rich I'd have one AND a normal estate (don't even do saloons). In my dreams...

  • Oh no I didn't get you wrong, I didn't say how old the car was and Mark might think its a heap of rubbish.I'm just spending the kids inheritance. Oh and just found out that when I use my mobile to answer blogs, it sometimes goes wrong, so my answers end up replying to wrong person if you see what I mean. No wonder I'm getting myself in trouble. Decided now to use only the computer to reply. (must be my age)

    Going on a 4 mile walk tomorrow, hope I can make it to the pub. Geoff the walk leader only recently came of pred from a four year journey with PMR. He still has problems with fatigue but nothing like he use to.

    Happy days...

  • Hardly Pete, personally I've always preferred older Mercs to the latest generation (too much technology and they've lost some of their status). My 'S' is 12 years old but looks and feels like new still. She's ageing gracefully, and quietly dignified (more than I can say for myself with or without PMR!). If I won the lotto I wouldn't blow £75k on a new equivalent and worry endlessly about it getting dinged by a trolley at ASDA!

    Yes, prob your mobile is the culprit but not difficult to track down your posts one way or another (can't afford to miss the gags!).

    Good luck tomorrow, take it easy and enjoy the sunshine if you have it where you are. Geoff sounds like a good lead to follow (excuse the walking / medical pun!).

    MB :-)

  • granted, wow what a great car!

    Jane getting cross with me now, must leave the computer alone for a while.

  • Sshhhh... :-)

  • You know - it is only the UK that has this fetish about a new car every few years. We have a Passat, it was an end of range, we must get rid of it out of the showroom bargain - it is now nearly 9 years old I think. Here we see loads of Passats that are at least 2 if not 3 editions older. They don't bother repairing scrapes either...

  • Don't I know it! All down to sophisticated marketing by the manufacturers and the relatively low costs of borrowing here - an easy 'sell' for the dealers. UK new car registrations are up year on year despite all that's going on with the economy, Brexit etc.

    Nothing wrong with a 9 year old Passat (or most other makes for that matter) if driven and maintained sensibly. I've also got a 15 year old Toyota Avensis with 161k miles on it - still going strong and looking smart (even if only worth little more than scrap value). I regularly see much younger cars than yours on a sad heap at the local vehicle dismantlers - usually due to the UK Govt's car scrappage scheme and incentives for greedy dealers at the expense of their customers' best interests. Shocking - but that's the car business and they would argue that it keeps a lot of jobs going in car manufacturing and distribution...

    As for Cortinas, ah, memory lane! :-)

  • I'll try again, see reply under MB

  • Oh no I give up......

  • What ARE you like?! (only joking) ;-D

  • I'm an old person!

  • In numbers maybe, but I'm sure not in spirit ;-)

  • He He

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