Walking mystery: Hope my friends here can shed some... - PMRGCAuk

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Walking mystery

bunnymom profile image
36 Replies

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 :)

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bunnymom
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36 Replies

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. 😓

bunnymom profile image
bunnymom in reply to

Sometimes I feel 82.

BonnyQuine profile image
BonnyQuine in reply to bunnymom

Me too!

markbenjamin57 profile image
markbenjamin57

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

bunnymom profile image
bunnymom in reply to markbenjamin57

Nice to hear others relate 😊

klairv0yant profile image
klairv0yant in reply to markbenjamin57

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

markbenjamin57 profile image
markbenjamin57 in reply to klairv0yant

See PMRpro's post on this topic..?

PMRpro profile image
PMRproAmbassador in reply to klairv0yant

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...

klairv0yant profile image
klairv0yant in reply to PMRpro

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

Klah profile image
Klah in reply to klairv0yant

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

PMRpro profile image
PMRproAmbassador

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.

in reply to PMRpro

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!!

PMRpro profile image
PMRproAmbassador in reply to

Costochondritis???

Klah profile image
Klah in reply to PMRpro

Is Costochondritis connected to PMR?

PMRpro profile image
PMRproAmbassador in reply to Klah

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.

klairv0yant profile image
klairv0yant in reply to

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 :/

in reply to klairv0yant

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

bunnymom profile image
bunnymom in reply to PMRpro

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!!

1Purplecrow profile image
1Purplecrow

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

bunnymom profile image
bunnymom in reply to 1Purplecrow

😘

Xanthe12345 profile image
Xanthe12345 in reply to 1Purplecrow

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

1Purplecrow profile image
1Purplecrow in reply to Xanthe12345

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

Xanthe12345 profile image
Xanthe12345 in reply to 1Purplecrow

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

Many thanks

PMRpro profile image
PMRproAmbassador in reply to Xanthe12345

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.

Klah profile image
Klah

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!

BonnyQuine profile image
BonnyQuine in reply to Klah

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

Tiny_Tim profile image
Tiny_Tim

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

Bobbury profile image
Bobbury

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.

Fracham profile image
Fracham

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.

bunnymom profile image
bunnymom in reply to Fracham

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.

Sandradsn profile image
Sandradsn

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!!

1Purplecrow profile image
1Purplecrow in reply to Sandradsn

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

Marilyn1959 profile image
Marilyn1959

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.

bunnymom profile image
bunnymom

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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