I find this puzzling. I can walk the dog for an hour a day and feel pretty much ok , maybe I ll need a little nap later, maybe not. But if I stand for anything longer than 15 mins or wandering round the supermarket can leave me feeling really ill. Same goes for exhibitions. It seems I have to keep moving. Although once seated the feeling starts to wear off again. Anyone else have this or can anyone explain this to me ?
Why does standing bring on my symptoms rapidly wh... - PMRGCAuk
Why does standing bring on my symptoms rapidly whereas walking doesn’t ?
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Seekingasolution
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DorsetLadyPMRGCAuk volunteer
I have similar problems with my back, but it’s not PMR/GCA related......it’s lumbar spondylitis & left sacroiliac issues.
But agree it does seem odd, although I suppose when you are walking the muscles are moving, when you’re standing still they aren’t.... my back is always stiff first thing in morning until I’m up and about and moving.
Depends what you mean by feeling ill. However, my husband and daughter have the same tendency. I wonder if their blood pressure might be on the low end and without the large muscle groups like calves and thighs helping venous return to the heart, they suffer a drop in b/p. Just a guess.
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If it is PMR symptoms you mean - even standing requires a great deal of effort on the part of your back muscles in particular to keep you there. When walking they are moving and not in the same place for long as well as always doing something slightly different but when standing they aren't - and the worst thing for PMR-affected muscle is sustained or repetitive movements.
Standing is a killer!!! Like my back and leg muscles just crack up. I did in fairness have the back issue before PMR. But it is hard to fathom alright. I will literally bend over in pain if I have to stand for any length of time and pay for it after. Maybe movin the weight around is easier than having to hold everything up all at the same time!! Another joy!!!!
Hi. I’m new to this but I have had a bad back for many years before PMR recently came into my life (in fact thought at first it was my back problem reoccurring along with old shoulder impingement but it’s not). Anyway my bulging discs give me back problems and I too find standing much more painful than walking as a consequence. I am very new to PMR but I guess it just combines with other aches and pains we have and sometimes it’s hard to tell which is which? Whichever I hope it eases soon. All the best Liz
So glad to learn I'm not alone. Finally broke down and acquired a cellphone. Part of this involved a visit to the phone store where I had to stand, socially distanced from the salesman with a plexiglass shield between us. Ten minutes in I did remark on how I could use a chair. They are not allowed to have seating, a health and safely issue apparently. Whole experience was about 45 minutes and I was afraid I would have another flare, like I did after the one hour outdoors choir experience (standing in a cold wind for about an hour) last month. It does seem strange that standing can be harder on the body than the same amount of time walking, even if you fidget to keep the blood moving as I tend to do. I had trouble walking from the store, which is, like all the other phone stores* and the drugstore, all that is open in our largest mall at the moment. It was like walking through a ghost town actually. But I could hardly make it back to the car! *So many phone stores.....!
It’s very odd. But HeronNS seems to associate best with my symptoms. It doesn’t give me back ache, it starts to generate pain in my hips and thighs but that’s relatively minor in comparison to how I feel. I start to feel unwell. Fluey. Quite a different feeling to pain. I just don’t understand it or what’s happening.
That is the sort of feeling I get before the Big Fatigue hits. I can't do anything except lie down.
Yes I’m with you. Sit down as soon as , lie down whenever possible to put off a more serious flare. But why would that be ? It doesn’t make sense to me. Why wouldn’t the same feeling come on after a slow but constant stroll through the woods ? What’s the mechanism ?
Have you ever checked your BP when you feel like that? And the walk, however gentle, does tend to stimulate blood flow. Think guardsmen on duty ...
The first time I went through a taper, which was largely successful until sometime last year and I even flirted with zero, there was a time, I think I was at about 4 mg, when I would feel I was walking through water. It was just so hard to walk. I didn't then relate it to previous inactivity or standing. But what is happening now is rather like that, only I'd say very much worse. On the other hand I am five years older and have been on pred that much longer, so...? Who knows where we'll be in a couple of months time? Better, one hopes!
I’m having the same problems with no understanding why. I’m going to see my GP first of all as it’s not improving. Good job it’s better walking than standing.
Let me know if he/she has an answer. Someone suggested better circulation, maybe oxygen intake, others have back issues ( I don’t ) but it does happen so quickly physiologically.
I will. My biggest problem is climbing stairs, by the time I get to the top I can barely lift my feet up and can’t breathe properly so needs investigating.
Hi. I too have problems standing, yet I can go for a walk, not far I’ll grant you, but I do a little walk most days, it takes about 20 mins.
When I stand even for a few mins I have to sit down.
Take care
Xx
Hello 2013mayo, I think I have found my twin, PMR twin that is. You have just described my problem perfectly. My rheumatologist says it's not a PMR problem, but what does he know. NOT A LOT!!!!! Trevor.
Hi twin,
I think it depends on which rheumatologist you see, they all have different ideas.
Take care
😍
Yes! Walked for two hours in the forest yesterday all ok! Some fatigue and glad to sit down afterwards but fine really. But standing baking or cooking is becoming very hard to do! I thought it was the haemangioma in my spine, though, which I had for a few years before PMR. So my comments may be non related, who knows! My doctor says I’m ‘complicated’ as have fibromyalgia, too, OA and inflammatory arthritis, job to know what’s causing what! Think you’re options are limited, learn to do what you can and limit the rest! I used to ‘ marathon’ cook/bake, now I can only do one or two items in a day, then rest! S x
"But standing baking or cooking is becoming very hard to do"
It's been a problem for me for years and it stems from the back problems - I can't do anything where I need to lean forwards at all and I can even feel lifting the kettle in my back muscles. Using a perching stool used to help with some things but really not practical now. It helps with the carbs avoidance though (no baking) and encourages seeking out food that requires little preparation or supervision when cooking! Pretty well all veggies now are done in the oven - brilliant!!!
It would appear, I think, that most people replying have done back problems aside from PMR and that the ‘standing’ issue is not airways related to PMR only! My husband cooks our evening meals, if I’m cooking I do it in the morning and put something into the Aga for the afternoon when it will be just right after about 4-6 hours! A matter of adaptation I think. Disability people said I should get a stool but Kitchen is small and not anywhere to stow it easily! S x
And one's knees just get bashed unless the kitchen is adapted. My Durham kitchen was very good - all drawers, almost no cupboards below counter level, and the hob was several inches lower so the perfect height for me. I was a bit worried when we sold it as the buyer was much taller than me - but she loved it!
Sorry for delay in reply, we are in portugal on holiday - joke! We were walking for three hours in the New Forest, where, as you know, we live! One stallion, lots of mares and 8 foals, plus sunshine! Anyway kitchen yes, knees would be bashed continuously! Counters are too high for me really as I’m only five foot high (on a good day) all cupboards below and an Aga...lovely oak kitchen out in before we purchased! So no stool! Take care and stay very safe please! S x
No apology needed - I know some people have a life ...
Not sure I’d call it that! Sixteen months without going into a single shop or having our hair cut or having a single person inside our cottage and not been into anybody else’s, either! Quarantining all goods in from food shopping to mail/parcels! Now excel at online shopping! Not even a single takeaway! Missing family so much, too. First outing after 14 months was to hospital. Other two outings were to the cathedral...for the jabs! No, not life as normal, but saved by living in a National Park and loving nature! Plus lucky to have a large garden filled with birds! S x
Fair enough - but you were out doing something nice at this point. Not like me 
Oh yes! Always! Even if it’s learning to crochet, or gardening or walking or building our model railway we always have nice things to do! I was hoping your life is nicer now as my friends on Lake Orta are getting about now, eating at restaurants albeit outside, enjoying nice weather on their balcony and walking a lot. I realise both of you have health problems though, and perhaps your norm is fairly quiet?! Take care of each other, Italy’s Covid numbers are truly improving overall by the looks of it! One day we shall travel there again, missed last Spring and this Spring’s visits! S x
OH doesn't eat real food any more! Nor walk. Anything I do is alone.
I’m very sorry to read that. I hope you have at least some better weather- although on the Isle of Man today it is breathtakingly warm and beautiful. I have an eager dog for company who is not chasing the bunnies 🐰
Fields of gorse near the coast. Lighthouse in the distance. Bert the dog in foreground
By UK standards it probably isn't bad - but by our standards it is pretty poor!!!!
I bought a perching stool to help me in the kitchen. It took an occupational therapist to point out that if I opened the cupboard door and make a space on the lower shelf I could put my feet on the shelf and tuck my knees in the cupboard so I could get closer to the work surface! Obvious once someone points it out but it wouldn't have occurred to me before!
I find cooking one of the most exhausting things I can do. The stool helps but I still need hubby to act as Sous chef and to get things in and out of the oven etc. Thinking of buying him some whites and a chef's hat
😂
Good to hear everyone’s experiences. My doc and the physiotherapist blame my weight and inactivity for my back problems. I too haven’t a problem walking, but standing in the kitchen does me in! I walk half an hour a day, usually and have been on a low carb diet for years - can’t seem to lose the weight I gained when first on pred.
Weight is very difficult to lose and very easy to put straight back on in my experience. I have had some success with Noom of late. It’s more psychological than nutrition based but they do encourage you to eat less calorie dense foods eg grapes rather than raisins. I find I can lose weight if I eat their minestrone recipe soup. Veg are sautéed in 2 teaspoons of olive oil, can of tomatoes, stock cube and ‘try not to eat too many beans!’ Ive also realised that what I used to eat as a snack whilst making my sandwich is actually all I should be having 😁. Plus it’s taken me a very long time to realise that I only use up 1200 cals a day so if I want to lose a lb a week I have to stick to 800 cals a day. Or for at least 4 days a week. Another tip was only make changes you can sustain- or you ll definitely put the weight straight back on. The weight I lost stopped indigestion but not PMR unfortunately
I know my back problems can't be ascribed to either - they were there long before PMR when I was slim and very active. But PMR definitely makes them worse!
Is your low carb as low carb as you think? Many people find the last of weight loss is because of the carbs they aren't aware of - like using fruit as a healthy snack. Healthy it is - low carb is isn't!
I can only lose weight very very slowly without going to starvation levels - I've managed just over 5lb since the beginning of Lent which for me is not bad at all!
Thanks for your reply. I had lost 30 lbs following a well rounded, nutritionists recommended diet before getting PMR. That is what I’m still following. I must admit I cheat every once in awhile but haven’t had potatoes, rice, quinoa, pasta etc for years. Protein, fat and fibre at each meal, grain once a day - not for evening meal, sprouted grain bread only, 2 allowed fruit portions a day, one sweet potato a week, no red meat etc,etc. Finish eating by 6 pm. A little of every diet I’ve been on and was very effective. Alas, doesn’t seem to be as effective now😊
Keep an honest food diary - and work out your carbs, bearing in mind there is some in all veggies and fruit.
You say 2 portions of fruit - what though? Snazzy and I can only lose weight on 20g of carbs a day - 1 medium banana can take us over that without adding anything else at all. And an apple is heading there. Fruit like that these days is all so big! Even a bowl of salad leaves has some carbs. A slice of bread, even the sprouted stuff quoted 12g carbs when I looked it up. A sweet potato is no better than an ordinary potato - in fact, dietdoctor says they have more carbs!
It's the pred what does it - if you have a fair bit of weight to lose, most diets will achieve a good result but the nearer you get to what you want, the harder it gets. Pred releases glucose into the blood stream from the muscle stores of glycogen - and that triggers insulin release too. Insulin plus excess glucose equals fat deposits so you do better when you reduce the BG levels as much as you can - which means from diet as you can't control the pred effect.
Both potatoes are a healthy carbohydrate source. And the same amount of white potatoes and sweet potatoes contain about the same amount of carbohydrates (1/2 cup = 15 grams of carbs). Sweet potatoes, however, have more fiber and are slightly lower on the glycemic index than white potatoes. For this reason, blood glucose will rise a little more gradually with sweet potatoes than with white potatoes. I usually have one half of a sweet potato one day, the rest the following day. Blueberries and strawberries are my fruit of choice , usually with yogurt, hemp hearts, chia seeds and almonds for breakfast.
Oh I'm not disputing that at all - but the point is that in the context of pred and weight loss, carbs are carbs are carbs whether they are healthy or not or whether they send BG up quickly or less quickly. It is the total amount of carbs you eat that is the crux in the low carb or keto approach to weight loss.
Thanks for the informative reply!
Does any of this ring a bell?nhs.uk/conditions/postural-...
Thank you for looking for an explanation but this isn’t the answer for me. My main complaint after standing for a short time is feeling fluey.
I was so interested in reading this post and answers, but almost no answer addresses my particular problem. I have not been able to stand still for more than a few minutes since I was a child. Yet I can walk for long distances. I generally have low blood pressure and have always attributed this phenomenon to that. Others did suggest that reason. Just to clarify, I am on no treatment for my leukemia, have no serious back issues, am quite thin and always have been. I'm going to continue to go with the blood pressure explanation for me! Good luck to the rest of you finding solutions. I'm just going to have to live with this for the rest of my life I think.
I have the same problem. When I stand for a while I have pain , especially in my right hip and upper thighs .
Do you start to feel fluey and tired as well by any chance ?
Yes I do , and I feel as I have a fever but when I take my temperature I do not .
Yes that’s exactly it !
Yes . That does sound familiar although I don’t know if it is related to any physical ailment. I worked as a carpenter all my life and I would always prefer walking to standing. Traditionally ‘concrete floors always draw the feet". That was the phrase I grew up with. You could try changing your footwear, I used to swear by Doc Martin ‘cushion-sole’ shoes or boots when I was working. Those Scholl heel support insole things might help as well, and they are cheap enough. Good luck.
Now that’s an expression I remember! I went to see a podiatrist recently to see what I could do about foot pain. He recommended a pair of shoes that look like trainers made by Rieker. The main aspect is that they don’t bend and so support the foot. ( I had chosen to wear very comfy bendy shoes with inserts!) This trainer apparently stops the pronation that causes bunions and movement in the small bones of the foot. I also like the zip which means as little time bent double as possible !
Unbendy trainer to support foot
Thanks for that. I shall look out for Rieker shoes. Fortunately since I retired, my standing around periods are greatly reduced. So old age does have some benefits!
Same here...not sure why, but if I am standing at the kitchen counter, 10-15 minutes is my limit...but I walk back and forth in the house or outside, no pain. I do think the amount of weight I am carrying may play a role. I didn't gain from the steroids for about a year, but that party ended!!! Even counting calories I continued to pack it on. 💖💖
Yes I realise the weight thing is going to be a constant battle. The days when I could eat salad for a couple of days and do a bit of jogging to lose a few pounds are looooong gone !
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