Walking mystery

Hope my friends here can shed some light on this question. I find it difficult to walk very far. I don't have any muscle pain or balance problems. I just get so far and my body says to me that I must stop. I am find around home as I know my distance but out of my area i can get into problems. If I say to my family I must rest now they look at me-- of course I look fine-- and then if I am pushed I fairly shriek at them "I'M SICK AND I HAVE TO STOP". What in the world is going on? Because of this I find it very hard to travel and have decided I won't for awhile. I marvel at those of you who are walking all over the place. Couldn't do it in a million years. I am 61 by the way and just had cataract surgery on one eye. Bit blurry but will get better. Other eye in 2 weeks. Thanks all :)

36 Replies

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  • yep. i know that feeling. I basically have to tell legs to get me to seat and look drunk. just spent early pm trying to walk with 82 year old ...i am 56 ....and she is better than me stamina wise. just arrived home a sweaty lump. 😓

  • Sometimes I feel 82.

  • Me too!

  • Hello bunnymom

    I can relate. I've noticed that, sometimes, I feel 'weak' rather than 'tired' (even though doing relatively well overall) - although I suppose you could argue that the two things amount to the same!

    It's only a guess, but it might be associated with, or some variation on the theme of DF (Deathly Fatigue) that comes with PMR / steroids / steroid reductions, even if you have no other symptoms (pain, stiffness etc). Maybe there's not enough cortisol washing around in the system (synthetic or natural) to keep your body's energy battery topped-up sufficiently, especially when under extra physical 'load'? And... you've just had surgery, even if relatively routine - and the associated Stress could be part of the equation too.

    I know what you mean about looking ok on the surface - people often just can't understand what's going on underneath..

    It'll be interesting to know what the Aunties think about this.. ;-)

    MB

  • Nice to hear others relate 😊

  • This is interesting to read, as I search for an answer to "why am I so exhausted after sitting at a baseball game for 3hrs". I only walked about a mile from train to stadium. But once home head, neck, back and joint pain. One day later, trouble motivating and moving. Very frustrating- unaware it can be from PMR combinations

  • See PMRpro's post on this topic..?

  • Sitting requires a lot of work by your back muscles - especially on uncomfortable seats. And taking notice is tiring - though maybe you just visit at the game ;-) But that is tiring too, as is fighting with public transport. It all adds up...

  • Wish I could add photo- I caught a ball too; that was excitement indeed :) thanks and have a pleasant day!

  • EVERYTHING is an activity!!...that is why it is so easy to get into trouble...perplexing anyway!

  • healthunlocked.com/pmrgcauk......

    healthunlocked.com/pmrgcauk...

    Fatigue is an integral part of all autoimmune disorders and some people are affected worse than others. Even I, familiar with my limitations as I am after 13 years, occasionally feel as if I have hit a brick wall of fatigue and all I can do is retreat to bed and sleep. Others can do other things - but not walk far.

    And depending on your current dose of pred - the adrenal aspect does come into play as Mark says.

  • The breathlessness I get doesnt help. Got Pain under ribs right side front And back. Don't know if I am holding breath because of pain or there is something wrong round ribs. Going to try and get Dr to at least get them to listen. 3rd time lucky!!

  • Costochondritis???

  • Is Costochondritis connected to PMR?

  • Don't think so but never say never. It is more common along with RA and ankylosing spondylitis but that is probably the nature of the diseases.

  • Omg this is my exact confusion: after a busy day, I have this happen. It feels similar to a time me too had broken a rib :/

  • yes. I have had a broken rib or 3 and it's that intense pain when I I try to breath or turn

  • That article was very helpful. I don't feel like such a crazy. I find it very hard to be able to predict what I can do and thus plan. 9 months more of working and then it will get better I hope

    I am at 12 going to 11 slowly so do always wonder how that may come into play

    Thank you again!

  • I am thinking something like that. But convincing her to at least examine me will be a trial!!

  • HiBunny... yep, understand your situation. My friends are all walkers!!!!!, and their idea of a great afternoon is going for 1-2 or 3 or more, mile walk. With PMR, I would get a short distance, and need to sit down...I mean...SIT DOWN. My whole body would feel weak, my knees felt like they were going to give out, and I was breathless. Plus the feeling of having cement-heavy boots!

    This is not fun.

    My friends have come to understand (after 4 years), what PMR is, and how quirky the symptoms and effects can be. They have quit expecting me to "go for a hike", and welcome me to come when I feel up to it.

    As, time has passed, more of us are 70+, and more of us, for various reasons, have begun to hang out in the park, visiting, while others go walking.

    I also discovered a handy little walking slick that folds out a little seat, for those times I venture out and expect I might need a sit down part way to wherever. It's small and light weight, so that might be an option, if you fear being caught out with no place to sit down.

    Best of luck with your eye surgery, ..................and know that PMR will continue through its phases, ".......................................and you are going to get better and better.

    Keep hanging out on this forum,....we got your back❣️❣️

    Kind regards, Jerri

  • 😘

  • Would love a walking stick with seat can you tell me where you buy them please

  • The are readily available thru pharmacy stores, sporting good stores, and of course on google. 😁

  • Hi Purplecrow can you please tell me where you bought you walking stick with seat.

    Many thanks

  • Just google "walking sticks with seat" - there are online offers and if you have a local store for medical aids they will almost certainly have them too.

  • Not at all bizarre!! I am 3-1/2 years into PMR and one of my more noteworthy remembrances of this journey is measuring my "improvement". One improvement is the distance I can walk...I remember 1-1/2 years ago I could walk the dog about 2-3 blocks and then would feel like you describe! I still have PMR, but now I can walk the dog 8 blocks😊 Things will improve...gradually!

  • Thanks. Sometimes it's hard to remember that there's anything to look forward to.

  • Having been invcredibly energetic for most of my 77 years I am now reduced to very short walks indeed , during which time I feel just like a jelly with very weak legs . It always worries me , but it helps to know that this seems to be quite a normal thing with PMR. I find it so difficult to explain that some days I can do quite a lot, but other days I just want to crawl back to bed and sleep. Naturally others find it difficult to understand this evil condition and keep asking me if I am better .I think a sensible way of dealing with that is to suggest they ask " how I am today" ....I may be feeling well, or I may be feeling lousy, but at least they may begin to realise the condition is ongoing !

    Tiny tim

  • You dont say what meds you are on, if any! From my same experience had exactly the symptoms you describe. For me it it was liking trying to walk through deep mud or had blocks of concrete on my feet. After consulting and taking advice from all the good people on this blog I upper my pred and it worked! Doctor not too happy about upping the pred but that's another battle. Hope the above helps and you feel better soon.

  • After 7 years on preds I finally stoped about 3 months ago, I can walk OK on level ground but feel tired as soon as I go uphill. Dr blames steroids causing muscle weakness. My legs are now getting stronger, so keep walking.

  • That is very encouraging to hear.

  • I can't go uphill and my walking friend hasn't got the knees for downhill. Living on edge of peak district used to be a joy....still like a drive out there but it's not the same. fingers crossed I can enjoy again at some point.

  • I can relate to this too.I feel too weak to walk very far sometimes.It's not a pain or ache really....it's just an incredible weakness in my legs.If I'm in town I have to have a little sit down and then get going again!!

  • my solution also! Again, just taking care of ourselves😊

  • Hi Bunnymoms.

    Have you read 'The Spoon Theory' by Christine Miserandino? It is just a couple of A4 pages in length and I was really moved by it.

    It explains in lay mans terms, in the form of a short recount 'story', how our condition affects us, even though we look ok. Have a read and see if your family members might gain insight from reading it as well.

  • Yes mam I have read that. It's just hard for me to know sometimes when my spoons are gone or when they will be refilled. Not a bad idea to pass around to family members tho. Thanks!

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