Now I think I know what DOSM is. I feel like I've... - PMRGCAuk

PMRGCAuk

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Now I think I know what DOSM is. I feel like I've been beaten.

bunnymom profile image
bunnymom

In an effort to improve my fatigue I was reading on a website about adrenal insufficiency. ( I am currently at 7) It was mentioned that walking a short distance sometimes may help. It is a trial and error thing. One of the things I have struggled with since diagnosis is muscle weakness and I just can't walk very far. I am 62 and have no health issues save PMR. So I thought I'd take a brief walk on a nice autumn day. I walked at a very reasonable pace for 12 minutes and felt energized when I returned. I told my husband, maybe this will be the thing that works!

Well, when I woke up the next day I felt like I'd been beaten by a bat! Stiff and sore everywhere. Of course, all the mental sorting out begins...is it a flare, what do I do with my dosing, how can I feel better? After day two I took one ibuprofen which helped and went for a blood test. My numbers look ok to me. sed rate 24 and cpr .61 Will see what the Dr says but today I am feeling better and I think its all been what PMRpro talks about delayed onset muscle syndrome. Always something new isn't there friends? I share this in the hopes that it is helpful to someone else. Enjoy your day today. :)

57 Replies
PMRpro profile image
PMRproAmbassador

Yup - sounds like DOMS (soreness by the way, not syndrome). Don't give up though: next time just do 5 mins and perhaps a bit slower. If you are OK next day - add a minute more. Rinse and repeat. You have to get into training!!!

bunnymom profile image
bunnymom in reply to PMRpro

That seemed like such a miniscule walk but I did feel better for a very short time! A five minute walk wow.

PMRpro profile image
PMRproAmbassador in reply to bunnymom

Which means 2.5min out and the same back!!! Yes, it is miniscule, it will get longer but you need to get there slowly. Finding a suitable bench/cafe/other resting place might let you do more - x mins out, rest for 20 mins and x mins back...

bunnymom profile image
bunnymom in reply to PMRpro

That's a thought. I will have to review my walking route and see where I can stop for awhile. It is all fits and starts isn't it?

PMRpro profile image
PMRproAmbassador in reply to bunnymom

It is :-)

Hidden profile image
Hidden in reply to bunnymom

Hi

I used to go to a Garden Centre when l was trying to increase my walking. We went in the car, I’d take a shopping trolley to lean on then walk around the shop, stop for coffee halfway & if l felt up to it had another walk before we went home.

I was telling my GP what l did & he thought it was an excellent idea which he was going to share with other patients who needed to increase their mobility.

Just a thought & there’s always lots of things to look at!

Good Luck

MrsN 🌺

Lafontainepam1 profile image
Lafontainepam1 in reply to Hidden

I have spinal stenosis which limits how far, or how long you can stand. I go to the stores and with the help of the shopping carts, I can get some excercise😎

Good idea!

bunnymom profile image
bunnymom in reply to Hidden

Oh my but lots of purchasing too! I would be great to enjoy a coffee shop like that. Can't wait till Spring again. Your house about done?🌸

Hi bunnymom (Monica.. if I remember correctly from the Members' Day?)

Yep, I know this too. Throughout my PMR journey, and even when feeling pretty wiped-out with the DF (Deathly Fatigue), I've tried to keep physically active - within reason.

More recently, and hopefully in the Departure Lounge from the PMR terminal (and feeling tons better), I've upped my activity levels and got more-or-less back to my usual Action Man self (e.g. painting houses, DIY projects, lifting, shifting, climbing ladders, valeting the family cars, raiding Charity shops, brawling with Tedski etc) :-D. I'm fortunate that I can do 3 or 4 days' hard physical work despite the underlying PMR disease activity that obviously still hasn't quite burned out... yet.

But.... after a stint of 'MB style Heroics', I, too, feel the effects of DOMS - and usually need a couple of days of what I call 'Energy Catch-up' / muscle soreness / resting etc. It's quite predictable, and I now factor this in to whatever's coming up in my diary in terms of physical exertion / potentially stressful events etc. The term 'Pacing' comes to mind - as PMRpro says..? But I try not to increase from my current 2mg (and soon gradually reducing) Pred since I feel pretty good otherwise, and the trend is continuing. Maybe it's a matter of balancing increased physical activity / cortisol demand with Pred dosage as appropriate..?

That said, I've always pushed myself physically. And, of course, I now have to accept that I'm nearly 4 years older since the onset of my PMR (coming up for 62 - what, ME?!).. and all that goes with it. OMG: age 62 soon - and the stark realisation that a third of my Life is over already... :-( :-D

But seriously, I know what you mean about the mental 'sorting out' / making sense (?) of what's going on symptoms-wise during the course of this often un-predictable illness, and why. This seems to be a common theme for Us Lot of PMR and GCA sufferers..

Hope this helps. Best wishes and try to keep smiling on the often un-predictable journey to recovery ;-)

'Uncle' MB

I think sometimes when unsure I am better to try one ibuprofen than increase my pred which I am loathe to do. Sorry I didn't meet you at Members day. Wish I had tho! I'm in the US. Glad to hear you are steadily improving. Onward and downwards!!!

Oh, sorry bunnymom. I must be losing the plot - I blame the Preds! :-D Nice to hear from you from across the Pond. As you say, onwards and, er, in whatever direction! :-)

Hi Mark, I was the one you met, glad you remembered me??!!! aka Marymon.

Although the post does apply to me. Those who spotted the me weaving down The Caledonian Rd after the Meeting, looking behind for a taxi, would have assumed I had inbibed too many red wines at lunch, ha ha.

When I was rescued by this lovely grey haired driver, I fell in and gushed how grateful I was, over tipped, and when I met up with my son I did have a G&T to sustain me on the train home.

Lovely to hear you are putting yourself about, and hug to Tedski.

Monica

Hi Monica. Yep, sorry, I got you and bunnymom confused. That's Brain Fog for you!

It was good to meet you (and your son - I remember it well), glad you enjoyed the day and celebrated with that G&T. Me too, with a glass of the red stuff when I eventually got home to the Mansions at about 8 that evening. Oh well, but it was worth the effort!

Thanks, all's pretty good considering, much less PMR pain & stiffness, doing more physically, and with less frequent / severe bouts of the DF (Deathly Fatigue). Fingers crossed, on & upwards (or is it sideways) :-D.

Tedski is well and truly hugged - he seemed to be the star of the show at and since the Members' Day. Ha - typical..!

Best wishes, keep well & keep smiling.. ;-)

MB

Don’t do too much. Make sure Tedski earns his hugs and vodkas by keeping The Mansions up to scratch.

No good having a dog (bear) and barking (growling) yourself.

No, I'm well aware of the need for pacing - even now. As for Tedski? Today I've got him outside on the balcony painting the railings. Trouble is, he keeps stopping to 'wolf'-whistle (ha-ha) at the pretty girls walking along the seafront. I've taught him well.. ;-) :-D

Hmm! I can only imagine your reputation in WSM. Enjoy 😉

Hi Bunnymom,I try to walk everyday and have slowly over the past year increased my steps.I wear a fitbit and find it quite a challenge to keep it up.Today I really didn't feel like going out but the sun was shining and the sky was blue so I made myself go and enjoyed it.I definitely feel better for it and my legs don't ache like they did at first.

MayH profile image
MayH in reply to Sandradsn

You’ll soon be as good as new x

Sandradsn profile image
Sandradsn in reply to MayH

That would be amazing😃

Sandra / Bunnymom, I find doing 20 'push-ups' helpful in the mornings. First the left eyelid, then the right... :-) :-D

😀

Is your six pack coming along nicely Mr B?

I had high hopes S, until Tedski nicked it and glugged down the blooming lot in one go (Extra Strong Lager from LIDL - one of his favourites) :-/ Oh well... :-D

'Probably the best lager in the world'!

...and maybe the best Glugger in the world..? :-D

😂👍

Please what is DOMS? Xx

MayH profile image
MayH in reply to Daisychain12

Sorry I can’t help. I can’t remember x

Delayed onset muscle soreness 🤣

ChrisMcT profile image
ChrisMcT in reply to Angiejnz

Thanks, is it me but a lot is passing me by ATM as I can only work out just a few a acronyms! 😉

PMRpro profile image
PMRproAmbassador in reply to ChrisMcT

Always worth trying google - amazing how many acronyms it will identify although it does help to know the general context.

Especially 'TLAs' PMRpro. (Three Letter Acronyms..) ;-) :-D

ChrisMcT profile image
ChrisMcT in reply to PMRpro

Generally I can't be bothered, especially if it's a newspaper article!

Oh wow yes I get that. I have had it for about 25 years courtesy of fibromyalgia xxxx

I agree with the advice to build it up slowly. For months I couldn't walk more than a couple of hundred yards without paying for it afterwards, but I tried to do a bit longer each day and now, although it can be exhausting to walk, I don't get the pain later.

One of my weekly treats these days is my walk to the public library. It's mainly along a pleasant quiet road, which has 3 bus stops with benches, 3 other benches and 2 nice clean low walls suitable for sitting on. My challenge is to have as few sit downs as possible, but it's reassuring to know the possibilities are there. In the old days, I zipped along in 10 minutes max, never thinking about taking a rest. Google says it's a 7-minute walk. I haven't estimated how long it takes me now, in case it's depressing.

An extra challenge is not to sit down while in the library, but I don't often achieve that and, anyway, I sometimes like to look at the magazines. I used to borrow up to 8 books at one time, but now restrict myself to 3 at the most and carefully check how heavy they are before I check them out. Then I might do a (very little) bit of shopping and I go back home. Final challenge - do I walk back or take the bus? In the recent very pleasant weather I did often walk back with several rests on the way, but now it's turning nasty, I'll probably be more inclined to catch the bus, though I only go 2 stops. Of course, I'm exhausted when I get home, but I do feel refreshed.

Years ago I read Arundhati Roy's novel 'The God of Small Things'. Sadly, although I know I enjoyed it very much, I can't remember a thing about it, thanks to old age/pred brain fog. I'm very grateful for the title though, as it describes the deity I now worship. How proud I am when I manage to walk for a few minutes, clean a window, change my bedding or read a short article in French without having to look up any words.

bunnymom profile image
bunnymom in reply to Marijo1951

We don't have busses here (small town) so I will have to plot out by car where I can rest. I didn't feel tired while I was walking only the next day. I have had times out visiting where I have hit the wall and have had to stop. I spent so much time resting in a Chicago consignment shop I thought they were going to hire me. My daughter left me there while she went on down the road. I examined everything they had and did get a bag full.

Marijo1951 profile image
Marijo1951 in reply to bunnymom

There are many disadvantages to living in London such as the astronomical cost of housing and the air pollution. However we do have benefits, including the bus services especially where I live in north London. I'd be lost without them, especially as I have a senior Freedom Pass and don't have to pay for public transport.

I was once so exhausted at a British Museum exhibition that I sat for 50 minutes in front of a very nondescript water colour painting of wild flowers. People were looking at me curiously, probably wondering what I found so gripping, and one of the attendants eventually came over and asked if I was all right.

Envy your access to the British Museum! ATB

I know I'm lucky - 20 minute journey on the 91 bus...

I have no health issues other than PMR. I walk 3 X 20 minutes everyday and find it makes me feel a lot better

Yes I found it made me feel weak ,it gets a bit better though as you get used to what yo can do and stop trying to force yourself ,Frustrating ,I have started swimming a couple of years ago and as a slow and very unnacomplished swimmer I didn,t try to go too fast .I couldn't swim fast before !!Just pottered with the kids as they were young . I do enjoy it and at the morning baths with a friend we are all more of the swim sedately for excercise,than show offs .Its good .I never thought I would I am over weight and self conscious but no one is interested ha ha so Its good .Soon get used to it . We do some walking up and down the pool .It is easier it does you good too .Physio suggested it . Less stress on the joints .

I find it uncanny how I wake up to posts that are so relevant to me. I am on 60mg Pred. Went to yoga class, felt great. Next day my body was like jelly, I could barely move. Epsom salt bath, then nap under heated blanket. Could be worse !! I think next class I’ll skip the stretches and do the meditation 😱

Hi, if it's any consolation I get just the same after walking any normal distance, like shopping at the weekend taking my usual route which I thought I would try for the first time since reducing my dose, well the next day I knew about it, and felt done in. This week I've had two days at work since being off Iast week as it was half term, and again it's hit me like a brick wall. It's all about pacing ourselves isn't it as I am finding out. Muscles ache and feel weak, and I'm knackered!! Sorry, I mean fatigued!

PMRpro profile image
PMRproAmbassador in reply to Lonsdalelass

I will say it again - NEW NORMAL!!!! :-)

PS - knackered expresses it SOOOOO much better than a mere "fatigued"

In the early days of PMR I broke up my shopping trip as 2 or 3 stores in one day was too much, physically and mentally. Then all the carrying in and putting away. Now I can do it. I think what killed me was my arenal glands were already struggling when I pushed the walk the other day. Live and learn don't we?

So true Lonsdalelass. All part and parcel of this nasty illness for many of Us PMR GCA Lot.

Well, now having gone to bed early last night and sleeping for 9 hours(!!!!!) I have woken to 'legs won't go' syndrome.......what is this all about???? Surely it should be the opposite after sleeping so well. It means after being at work for the first two days of the week, I now today can't physically manage my third. I've been in tears already, and feel PMR has won this week, and I hate it. Its a week now since I began to reduce from 15 to 13.5, and felt I had been doing so well (apart from Sunday). Am I heading already for the scrap yard? So depressing!

PMRpro profile image
PMRproAmbassador in reply to Lonsdalelass

Is this a return to work? And in combo with a reduction? Never a good idea I fear. However well you may feel at home, the effort of getting to work alone is a major add-on.

Back to 15mg. get things under control and then try just 1/2mg at a time. Preferably with one of the slow approaches. People who work almost always need more than if they don't. It took me over 4 years to get below 10mg from 15mg.

Ok dear that I have not had. Maybe start a new post so others may help you. I found working to be very difficult and after changing shifts and reducing hours I retired. Not to discourage you but you are up against a disease that may be with you for almost 6 years. You will learn what you can and cannot do but it takes time and resting. Hope your day improves 🌸

Thank you both, maybe I am just feeling sorry for myself. I suppose you could classify it as a return to work if we factor in half term (as I work Mon Tues Wed it was like 10 days off) and I started reducing on Weds in half term so its only a week in. I didn't think of it when I started to taper, only glad now I didn't go as far as the dr wanted me to (down to 12.5!) or I would be far worse I fear.

I have bloods again tomorrow, and a call from the dr on Mon next week to discuss results, so it will be interesting to see if anything i.e. my levels, have changed. Although I have read on here that we can have symptoms without those rising. So we will see. Should I wait for him to give me the go ahead to increase back up to 15mg? With having bloods tomorrow I am inclined to hold off, and i am hoping that by not being at work today and resting, I will be able to stay at 13.5mg. Is that me being naive and overly optimistic? Also, as i am on the enteric coated preds, and the lowest dose I have is 1mg, how do you get .5mg pills? I don't have a pill cutter! I could maybe try going down next time to 14mg and not 13.5mg?

PMRpro profile image
PMRproAmbassador in reply to Lonsdalelass

You have 2.5mg enteric coated? 2x5mg plus 2.5mg plus however many 1mg tabs you need to get to 13.5 or 14.5mg, 2x5mg plus 4x1mg for 14mg - with the full selection of enteric coated doses it is relatively easy to do 0.5mg steps even without using plain pred. You mustn't cut the enteric coated tabs though - takes away the whole point of them.

Yes, of course, PMRpro, so glad you're helping me with this! I can see how easy it is now (brain fog!). Is it safe to increase as we feel fit, i.e. without the drs say so?

PMRpro profile image
PMRproAmbassador in reply to Lonsdalelass

You are only going back to last week - not really an increase. Are you using a slow approach? Dead Slow and Nearly Stop (mine) or DL's version which some people find easier?

healthunlocked.com/pmrgcauk...

Lonsdalelass profile image
Lonsdalelass in reply to PMRpro

I am going to after this. I was intending to use the DSNS approach the first time, had seen the one posted on here by DL, and had even written it all down from this forum, but hubby thought maybe I shouldn't as the dr hadn't told me to, and I was thinking its only a drop of 1.5 and still some way above 10, so I should be ok........should have done it!! Obviously! I will be working at the weekend, both days, so think I will go back to 15mg on Friday and then speak with the dr on Monday as planned after bloods results are back. Thank you so much for all your advice and for taking the trouble to respond, it means an awful lot. X

PMRpro profile image
PMRproAmbassador in reply to Lonsdalelass

That's why we're here. So you aren't alone.

I'm asking that as I have to work at the weekend, and am thinking now it is a good idea to maybe up my dose back to 15mg to get me through. I won't hear from the dr until Monday.

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