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Living with Psoriatic Arthritis (PsA)

I want to run and keep running

Great attitude, Sybil! You amaze me—I hope you’re able to keep it up on a regular basis. It can only be a good thing for your lungs and the rest of you, especially if it doesn’t hamper your breathing!
:running_woman:
And then there’s always this if that becomes too challenging: :biking_woman:

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Thank you for sharing. It is amongst my illnesses, and occasionally find I need to run away from smokers , including my husband, and car exhausts. Felt quite faint the other day walking in traffic, hard to tell if breathing insufficiency is heart or lung derived, but yesterday on a similar wild impetus walked up to third floor office instead of using the lift! Think will walk to work this morning, all hail to us!

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That would be me, but out of fear someone creepy was following me in the dark! My legs would probably turn to mush!!!

But, now that you’ve brought this up, I do remember times when I pushed myself into doing what seemed like the impossible, i.e., climbing scaffold to paint, chasing a runaway two-year old, bicycling—it actually does make me feel better!

You’re amazing for running, tho! It’s like you defied your COPD and did the opposite of what most people would do with that diagnosis—and surprisingly it didn’t hurt you at all!

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@letizia, air pollution is an issue for sure. I guess whatever the state of our lungs, third floor offices offer opportunities to expand capacity.

I find it hard to know what’s happening - sometimes I feel all funny for no apparent reason, I’ve got so used to it. I don’t even know if I have got COPD now … x-ray said I did but spirometry test yesterday showed a good 'ol pair of lungs - which doesn’t mean I don’t have COPD, but makes me question it. Pain & soreness in my upper chest / neck is constant now & I feel lousy, maybe something else is the problem instead of COPD or as well. I’m dreading the morning call to GP pleading for an appointment this side of Christmas - would love to run away from all that!

@Grandma_J, haha, your description of pushing yourself is wonderful - I see it all like a speedy silent movie … it’s like there is a side of ourselves that is still actually pretty fit … sometimes. And having even an improved chance of evading creepy people is on my mind when testing out the running. Any female who likes getting out on their own after dark needs to know that they can leg it if necessary. Guys too, of course.

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Too true. Really am considering moving to the coast, only get so tired as It is with work close to home downtown, that sometimes am too tired to do anything but sleep when get home
After all guess am no spring chicken at 57… but exercise is fundamental, even if Steve Hawkins managed to be my all time hero with his own problems

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Sybil, I am hearing you with finding it hard to know what’s happening - and sometimes wishing we could run away from it all (we won’t because we are both good patients, but sometimes…). I have been doing really very well most of the time, and feel generally pretty healthy, but popped up with a very odd inflammation in patches of skin on my face that has lasted for weeks, popping up and down at a whim overnight in different spots… cue the many tests to exclude all of the things that could be, and of course, no definitive answer, just raised ESR and CRP.

Meantime though, I did my first little showjump in over 25 years on a friends horse the other day - and OMG it felt good! Like flying :smile:

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Thanks Jen! I needed to hear that. I liked the GP who sent me for x-ray - he was zen-like! Barely said a word. And I was so proud of myself for getting out of there quickly to let the much sicker looking folks have their turn. Now I realise I was a twit - should have given him chapter & verse, not just breathing issues, he’d have listened I think. The thought of all the tests and whatnot, all the potential dead-ends, weighs on anyone who has experienced it.

Navigating the NHS is not easy, I guess there aren’t many countries where accessing medical services intelligently is easy. But like you say, there’s the things that happen ‘meantime’! i.e. LIFE. Flying through the air on a horse OMG, that’s living! Just a moment, but what a moment!

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I hope by now you’ve seen your doctor for this. You need some more tests. It sounds like either indigestion/heartburn which can mimic heart pain—OR it CAN BE HEART PAIN! I don’t mean to alarm you, but please get this checked out ASAP! Sometimes the stress test doesn’t reveal imminent heart attack—maybe you need an angiogram.

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Decisions, decisions. You sound like someone who loves nature. I live in a town but the proximity of the sea is a massive plus. Good luck with weighing it all up letizia.

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I know! You’re right. You’re just right. One more day of assessing this stupid bl**dy body and then I’ll make an appt. tomorrow unless I get one of my magic recoveries big time.

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Even if you get one of your magic recoveries, it wouldn’t hurt to have your heart checked or rechecked. It would give you peace of mind. Knowing what I know now, the only test that can give you a for sure answer is the angiogram. I had one 20 years ago (or so—I have no concept of time anymore) and it was fine. I had another angiogram 4 years ago and I’m so fortunate for the ER doctor who paid close attention to my “mild” symptoms and ordered all the necessary tests to convince her I needed the angiogram. I have a small amount of damage to my heart, but my cardiologist told me I would have had a full-blown heart attack very soon if I hadn’t gotten the stent when I did. Who knows how that would have turned out???

So, please push for tests—this is nothing to fool around with.

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I hear you, thank you Grandma_J.

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OMG my concept of time. It was 3 years ago—just before my 63rd birthday. I felt compelled to make the correction—I honestly think I’m senile!

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I know how you feel. I have had the desire to run, or in my case walk very fast, and bust my knees wide open just to feel alive again! After a long summer, then foot inflammation that left me in a boot and lots of pain, I just want to run free. Try something new.
In my experience my PsA hops around. My knee will hurt for weeks, then BOOM my shoulder hurts and my knee is fine. Then my back will kill me, then BOOM my toe is all red.
Maybe your COPD is another BOOM or inflammation trying to see what else it can mess around with. I really hope so. My grandmother has COPD and it’s not pretty but she is also inactive and doesn’t work her lungs like she should.

I wish we could all do a workout class together! Might be very interesting.

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Any of you “Runners” in the California area? We have a mod and a board member as well as several other members who are also runners. My goal SOMEDAY is to actually run/walk a half marathon (heart Surgery in Jan may slow that down). John Stammler on our board and an ASD Survivor runs a full marathon every year as a fundraiser (NY Marathon as I recall) for Bens Friends. How cool would it be if we could all get together for an event to demonstrate “We Have Rare Disease, but Rare Disease doesn’t have us!” Even if we couldn’t all get together in one spot we could hold concurrent events with small groups all over the place as an awareness event and joining by zoom conference to Celebrate… @Seenie could lead the scooter squad…

TJ

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I once was a runner. I ran many marathons and was extremely fit. Over a two year period I declined so much I could barely walk to the letter box. Sometimes couldn’t walk to the front door. After being diagnosed and having proper treatment put in place I’m much better than I was. However the PsA destoyed the joints and muscles in my toes.I miss running so much.

Hi ablast. Welcome to the forum.

I’m curious - are you able to walk any distance? How do you handle the damage to your toes in terms of activity? I’m guessing that footwear is key but am interested in hearing more from you.

My toes are somewhat damaged but obviously not so much that they cause constant pain. They complain randomly, like many of my joints. I don’t know if running or even walking makes them worse or better, I suspect it’s a mind-boggling mixture of the two.

Hey Sybil,
Walking distance pretty much depends on what’s going on with me at the time. At times I’m able to walk around and get the shopping done. Then there are days where it is a major effort to just get in and out of the car. There are also days where Just getting out of bed to get to the loo is a major effort. I have a very small vice and a few tools that I use to keep my fingers and toes straight as a couple of times a year they start to buckle up. I have a pretty high pain threshold and I push myself to stay limbar and stretched. I make sure I walk for at least five to ten minutes a day. When pain is relentless I tend to go pretty quiet and just want to be left alone. I find having a good bond with my dog and paying him attention takes my mind off the bad times. The mind still wants to go 100 miles an hour but the body just says NOT TODAY!!

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It’s like a magic potion sometimes isn’t it?

For a moment there I thought you were referring to a drop of whisky or something! Sounds like an interesting contraption!

Wow, things are so variable for you. But I suppose many of us don’t really know how things will be tomorrow or come the afternoon.

Totally get the need to hide away sometimes, too.