Newbie questions (yes .... more)

[Theziggy]

Just wondered if

a) anybody jogs or runs when pain free

b) anybody takes milk-thistle

thanks in advance

[Hidden]

Hahahahahahahahahahaha! Jog? Run? I do well to walk!

No on the Milk Thistle, sorry.

[PMRpro Ambassador]

Jog? Run? I'm delighted when I can walk!!!!

Why milk thistle? Which aspect of the claimed benefits are you thinking of? If it is the effect on the immune system beware - your immune system is overactive anyway and we are warned against taking supplements that "boost the immune system". Not to mention - pred is trying to suppress it!

It also interacts with a lot of medications so do check:

webmd.com/vitamins/ai/ingre...

[Constance13 in reply to PMRpro]

I often wonder what would happen with most of us if we ‘had to’ suddenly run.😏

[Hidden in reply to Constance13]

Hahahahahahahahahaha! I would be quickly relieved of my wallet and jewellery!

[Chrob in reply to Hidden]

I will not try to catch a bus either .

[Hidden in reply to Chrob]

Nope... it's usually 7-10 in for next one here in Brighton, no running for buses either!

[scats in reply to Constance13]

last time I tried to rush ( not run ) I triped over my own feet, they just can't move fast enough.

[powerwalk in reply to Constance13]

ha - I look at a bus - just out of reach - and I can't run - it just feels so alien to me now!!! and I don't get very far if I try - like my legs are still just walking even though in my head I'm running!!

[DorsetLady PMRGCAuk volunteer]

Certainly not at the moment - just had new knee!

Not that I could run before! But one never knows.🤪

[ConventCassie in reply to DorsetLady]

Soon thou, right? Glad you’re back!

[DorsetLady PMRGCAuk volunteer in reply to ConventCassie]

🤦🏻‍♀️😋

[peace_lover in reply to DorsetLady]

Hope all went well.

[Marymon in reply to DorsetLady]

I have had two new knees, can’t run but that may be me, the old avoirdupois, but you will be able to walk pain free.

No dancing on tables just yet💃🏻

[ConventCassie]

I do a combination of walk/run on the treadmill. If I’ve worked all day (standing) I only do 10 minutes. On other days, I can get up to 20-25 minutes. Now I’m into swimming on my days off.

[Hidden]

Welcome to Our Group 💐

Sorry, no running l’m afraid, I think l’ve achieved a lot when l walk more than usual!

Mrs N 💅🏼

[Pongo13]

In my Dreams....

And no to milk thistle

X

[HeronNS]

The most I can manage now is scout's pace if I need to get somewhere and time is short. Usually end up with pain in osteoarthritic spine the next day. I do wonder what would happen if I had to suddenly get out of the way of an oncoming vehicle - a lot of pedestrians get knocked down here, mostly in marked crosswalks 😱 because drivers don't seem to care that some of us are not especially spry.

Also no to milk thistle.

[Maisie1958]

Hello, I really couldn’t run or even walk vaguely quickly till about 18months post diagnosis of PMR. Even now, 3years later, I prefer to run (slowly) on treadmill-I could trip over nothing-kerbs and uneven pavements were difficult. No to milk thistle sorry. X

[JanetRosslyn]

I tried to run to catch a train on Saturday.... only because hubby went charging ahead and he had all our cash and Wimbledon tickets... I made about 10 yards then had to stop. Luckily hubby looked back and stopped too. I just stood there crying. Before PMR I'd ran 30 miles a week minimum and had completed 7 marathons. On good days I had wondered if I should try a little test jog. Definitely not for me just niw it seems. But never say never!

[Dream21]

No I was an avid swimmer 3/4 mile swim five days a week. Now after 2 years GCA/PMR, a 20-30 minute gentle walk on a good day is about right. If I do anything too strenuous, my body feels horrible and I am on the couch for at least a week. Everyone is different. This is just my story.

[markranson]

I don't run as I'm not really built for it anymore. I do however go hiking when I'm pain free. I've had PMR since mid-2015 (was in Hong Kong) and got to zero pred in February 2017 whilst in the UK. At that point I went for a fairly pathetic hike and at the destination (a pub of course) I felt very tired; you know, that lactic burn feeling in the big muscles which then stiffened up. Shortly thereafter I went to the NHS clinic for blood tests, which came back negative. That news was given by the receptionist so they had zero interest in discussing the matter further inspire of being told I was in pain. Anyway, a month later I returned to Hong Kong (self-employed / self-unemployed there) where red can be purchased over the counter. I put myself on 10mg per day and that did the trick, but as I tapered, I've only managed to get down to 5mg and still have pain in the shoulders/torso. I go hiking (plenty of hills here) whenever the fancy takes me and think it does me good.

[joyce69 in reply to markranson]

You go hiking! How fantastic. I went to the theatre last night which involved a much later night than usual for me. Today I am completely zapped and still trying to work up the energy to shower.

[markranson in reply to joyce69]

When I first developed PMR big time, it was about 2 days before a trip to the UK. Within 24 hours of arrival in UK I had trouble getting in the hire car, couldn't put my socks on without help etc. etc. I was in the UK for 2 months and saw to private doctors who had no idea what was wrong with me. I was given Ibuprofen first and after the second visit, Doclofenac. Nothing helped that much and when I looked in the mirror I had the complexion of one of this modern day Hollywood vampires. On return to HK I went to see my regular doctor and he referred me to a rheumatologist who diagnosed PMR. So, my initial symptoms were classic and very uncomfortable but, in spite of setbacks, I can manage at the moment and I seem to have fared better than a lot of poor souls. Being ex-military I think provides me with a lot of physical strength and perhaps a slightly higher pain threshold but I need to get fitter and lose some weight. I really feel for the folks who are apparently crippled by the condition and, once on Pred, have to suffer people telling them how well they look.

[joyce69 in reply to markranson]

Well done you and long may it last for you. Good luck 😀

[PMRpro Ambassador in reply to markranson]

That's interesting - your comment about looking like a vampire! I assume white as a sheet? I even bought make-up because I looked so grey. Wonder how common that is?

[markranson in reply to PMRpro]

Yes, I looked grey with dark eyes. I think it was caused by the stress and discomfort of the pain.

[Hidden]

I am desperately trying to get back to competing in agility events with my dogs, my whole life before PMR. I have started training with them recently explained to the trainer I cannot run but want to try distance handling. This week she set up a course and I was able to lollop around a bit, my dog is well trained and can follow hand and voice commands. Unfortunately the trainer wanted me to excecute a back and front cross which involves turning. Very dizzy so called my dog round instead. We completed the course perfectly but the trainer rather nastily said I did it wrong, I just didn't want to play the I'm not well card, but people just don't understand do they?

[Constance13 in reply to Hidden]

I went into a pain management hospital, mixed group of 25 - 75 year olds ( I found out later). I have PMR and polyarthritis. One of the ‘so called’ special therapists used to get annoyed if people didn’t do exactly what he said (how understanding is that)?😡 I complained and was put with another therapist who was ‘a little’ more understanding.

After two weeks I was a total mess - the organizer came to me and said “you can take this course once a year” (he had read my background). I was very polite and said “not bl...y likely.😂😂

[Danda99]

I take milk thistle alongside the pred, for a different disorder (which used to cause me 'piles' of problems!) There has been no interaction with the meds & the supplement for me.

I am training to become a Master of Herbal Medicine, but would never give advice to anyone without a detailed consultation face to face (it's against the rules anyway) but just letting you know it works ok for me and is good for supporting the liver.

Welcome to the group 😊

[Jackoh]

Welcome Theziggy!

No and no !