PMRGCAuk
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Beware of the Water

Who knew Swimming wasn’t just like riding a bike again after a suitable hiatus? Then again maybe the bike wouldn’t go so well either. I’m aware I must take things easier with PMR, but I thot I was in shape. Work 8/9 hours on my feet & go to the Gym 3+ times a week so I wanted to swim to get my “arms in shape”. Well, that didn’t go well. I only planned to swim 4 lengths of the pool to start. I carefully got in using the ladder althou I was tempted to jump. I started the freestyle and I could hardly BREATHE. I could barely make it to the next breath after each stroke. I actually stopped 3 times before the end. On the return the back stroke went well. (Shoulders we’re functioning & all.) Tried the freestyle again (in College I could swim a length without breathing). So I tried to take less air and still stopped a few times. The backstroke went well again so stuck with that actually did 2 more lengths than planned.

SHOCKER how that PMR has such an effect. Getting out I was dizzy & stumbling like I had “sea legs”.

Can’t wait to go back Wednesday, but for all you 3/4 Club members-this isn’t for the faint at heart!

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WOW You sound like Wonder Woman

I work but only 5 hours a day

Walking is fine for me but my arms do not like to much exercise always feel it in the muscles hanging the washing on the line is like going to the gym for me .

I think many of us get breathless if its due to medication or being unfit who knows .

I can only Marvel at all you do puts me to shame .

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Snap. Hanging washing up is a work out for me too! I also want to have a lie down after having a shower and drying my hair 😂 Winner when it will ever be effortless again?

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I’m sorry, I didn’t mean to put anybody to shame. I was just so surprised at the physical limitation. I do have priorities and while I tried swimming, housework is not one of them. I do my fair share of resting.

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No

Don't worry you have not put anyone to shame

I just wish I had your energy

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Exactly. Leave housework and do something nicer.

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What's housework

Days of stressing over the house work long gone

PMR gives you plenty of time for doing things you enjoy as long as you have energy .

Sitting in garden thinking how beautiful the Wisteria is at present

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I can't breast stroke as my neck knackered and now PMR has precluded crawl (freestyle). I either walk up and down the pool or I swim underwater. If my neck straight and my arms not lifted above shoulders I am fine 😂😂

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I’ll try the breast stroke underwater. That’s why I gave up on swimming-my neck hurt. But I thot without contacts, I could do the freestyle. The backstroke was great except I’m afraid I’ll hit my head at the end of the pool.

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It’s horrible to be reminded of our limitations. Well done for persevering. I trot round within parameters, water is for bobbing about or floating. This truly is a systemic disease.

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Wow! Who knew? That’s like never come up before. Perhaps that’s why I don’t like meditating so much anymore. All my go to recordings involve deepbreathing for a bit. You’d thing we could improve it.

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....... and we are all unique.

I need a rider on all my posts that says “ in my experience or opinion”.

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Yes. It’s called IMHO on Facebook. Just so you know, your “humble opinion” is more valuable than my Internists or Rhumy’s opinion. We obviously are “Writing the Book”.

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WOW!!!!!

You lost me at, "...work 8/9 hours on my feet & go to the Gym 3+ times a week."

Wait... what?

I go to the loo and the refrigerator 3+ times a day...

PS - Seriously... you rock! Sorry the water won Round 1... go back and kick it's ass!

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LOL! :) I’m gonna try.

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I just laughed out loud with" I go to the loo and refrigerator 3+times a day"😂

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Hahahahahahahahaha. Good. It wouldn't be funny unless it were TRUE! : )

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😃

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You sound like wonder woman to me too! I'm going to be at a hotel with a pool at the weekend and, if i can find a swimming costume, may just try the Jacuzzi or a bit of gentle bobbing in the pool. I've no strength in my arms at all.

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I would definitely get wet & go for it - one arm at a time :)

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A+ for effort. Interesting enough my symptoms of PMR started after my first return to the pool in my attempts to get back in shape. Just started with gentle laps and stretching - nothing crazy. Next day woke up with all kinds of hip/buttock pain and stiffness. Tried swimming again about one week later - Boom next day wake up with shoulder/shoulder girdle and neck pain and stiffness. That was back in Jan 2017. Fast forward diagnosis of PMR and presently on 11 mg of pred

For me, I have noticed I am limited on how much I extend my arms and legs away from my central body frame. I know there is such a thing as neural (nerve) tension and was wondering (since arteries/veins and nerves travel together) if there is tension on the vascular system. I remember reading an article posted by PMRPro regarding a vascular connection and PMR. For me it’s like there isn’t enough oxygen getting to the muscles.

Wondering if anyone had thoughts on this?

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My perception of (undiagnosed) PMR was that it was an extreme version of pain caused by overexercising, only it never went away.

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Extreme version of pain for sure and in my case triggered by exercise. My curious mind wonders what keeps the inflammatory process going when normally one recovers from post exercise soreness in a few days.

What was your trigger to start the PMR process?

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Stress, I think. I'd been living through a cascade of stressful events for quite a few years, starting with my stepmother being scammed out of a very large sum of money, proceeding through plans for building an addition to our house (eventually cancelled), a broken leg, retirement and feeling housebound because of a winter from hell. And other events which seem minor now but at the time added to the load. One evening I remember writing a post for this very forum listing all the stressful events I could think of from the past few years. I think I got up to sixteen items. I then deleted it before posting, and it was like a release. I don't think I could remember all sixteen things any more. :)

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Wow. You have had a lot on your plate. I hope your stress is greatly reduced now and ‘the waters are calmer’ for you.

Like you I also experienced a lot of stress over a period of time and was just hanging on with life. Thought I’d finally do something selfish and focus on me when I tried the swimming. It was the tipping point for me.

I just started reading a book called When The Body Says No - The cost of Hidden Stress by Gabor Mate M.D. He’s a Canadian physician living in Vancouver I believe.

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Yes. Once I was diagnosed and properly treated life changed a great deal. I've kind of let go of a lot of what used to bother me. Unfortunately my house shows that, but I'm not the only person living here and I cannot destroy my life by continuing to shoulder all the psychological burden of maintaining this dwelling. If my hubby is incapable of understanding that he's a partner in this, not just someone who could "help" me when asked, well, so be it. I don't have capital to squander on this issue any more. Although the fact that I mention it here does show that it still bugs me to some extent. But other issues have pretty much evaporated (as did my inheritance, into the hands of criminals; the Universe obviously did not intend me to be wealthy in this life 🙄😕). It's more important to take time to observe this beautiful planet. Or learn to be kind, which I think does not really come naturally to me. PMR has made me more empathetic. Old age has made me more patient with others.

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Definitely a life lesson from PMR for me anyways has been to be less self sacrificing and shoulder all the burden as you have identified. I have shouted out loud on more than one occasion “enough is enough universe”

Like you I have changed my focus. Try to be kind and enjoy the natural environment more. I appreciate the beauty of the backyard birds and their songs and my walks in nature.

I can’t change the past and I try to the best of my ability to not worry about the future too much and like you have learned to let go of many things and also people in my life who are not authentic and good for me.

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Disengaging from energy vampires is vital in long term illness and life generally. I knew one person who was so negative that they would find fault in winning the lottery. When they asked how I was I would say fine thanks....in return they would spend an hour telling me how everything was horrible for them. Like others have said many times on this forum when you do try and explain how you feel the response us you I am tired and have aches and pains. I always do a silent thought to the universe for people to to learning experiences that allow them to access their empathic and compassionate side. It's a shame one has to separate from others sometimes as I think it's all about connection. Without connections life is boring. Authentic and honorable people are vital to ones well being. The ability to laugh at yourself is also a great survival tool.

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Well said!!!! Connections are very important and the sharing of stories is what connects us. Just important to surround oneself with as you said authentic and honorable people. Key for me is to find balance of extrovert /introvert time. When one is wired to be a giver one has to watch that they don’t deplete their energy and find restorative time-PMR has definitely taken the lead on forcing restorative time😉

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You’re not alone in being meant to go through this life not wealthy. I wish I didn’t have to say I work because I have to. I think we all struggle & we all come to terms with things and cope. Onward!

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I felt like the pain in my legs was reminiscent of lactic acid building up when I used to cycle. I mean proper uphill cycling like Pyrenees or I presume like post hard run. If I stopped for a few mins it stopped then, but now after exercise it gets more painful even after stopping.

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I know. It used to be a short rest or a good nights sleep and good to go. It’s like a chronic build up of lactic acid or a chronic ischemic like trickle.

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See my response to karegodd

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Cycling up the Pyrenees, Tour de France? peut t'etre 🚵 I could drive up and cycle down when I lived there, and I could manage to sit and look at them with a glass of cool white. 😎

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I used to think it was great holiday 😂😂

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Yes - that is probably what happens. The exact mechanism isn't known - I personally think there may be something mitochondrial going on. But in PMR it is probably the small arterial vessels that are not functioning and the muscles don't get a good supply of oxygen in the first place and then the blood flow isn't efficient at removing the waste products which is what then leaves you with muscle soreness.

The autoimmune part of the disease is continuing, attacking the muscles all the time. making you feel as if you have flu. That chugs away in the background - all the pred does is remove the inflammation to relieve the swelling and pain some. The rest you have to do - pacing and resting appropriately as the muscles are unable to signal you are asking them to do too much and then are unable to repair themselves after exercise. So the DOMS (delayed onset muscle soreness) lasts longer than it usually did.

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That is the best discription I have heard and was my gut feeling after reading a reference article you posted awhile ago. It makes sense. Everything happens for a reason, it’s just to connect the dots. I tried to have this discussion with my rheumatologist just 2 weeks ago along this vain and he was noncommittal and dropped it pretty quick. Just another reason why this forum is so great. We all definitely have an invested interest in improving our quality of life and understanding better how to work with our body in the parameters of PMR.

Thank you so much for your experienced informed hypothesis of what could be the mechanism behind PMR. Further research is needed!!!

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It always is...

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That makes so much sense to me and explains why, sometimes, I'll have sore muscles in the morning that feel as if I actually did some exercise the previous day! (That's on top of the ongoing mild background ache!) Also explains why it's so easy to overdo things!

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BTW which article is it that karegodd is talking about?

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Sorry to hear that. We try to get better, but it seems a hard road. Not gonna keep me from trying thou.

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Good for you ConventCassie ! I could never swim pre PMRGCA so not going to try!!!

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I couldn't swim but I could manage aquafit in a warm pool even with PMR and no pred!

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That's encouraging- wouldn't probably have considered it as not good in the water.

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I can't abide getting my face wet now - I used to swim, do life-saving, diving to pick stuff off the bottom of the pool. But aquafit is differnt, you do it at your level and you don't have to get under the water!

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Never done much in water as nearly drowned when I was 10 but perhaps this is something I could work at.

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I went to Australia shortly after my diagnosis of PMR and although a really confident swimmer - almost drowned when I “dived” into the waves! I felt so stupid and now have no confidence in swimming. Totally agree with everyone re hanging washing out and drying hair! It’s all a horrible experience - especially when ones been relatively fit and active. Hoping one day things will improve!

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They will. But man! The ocean is truly a dangerous place & we have no strength to fight that undertow. (And we don’t know it!) I think we can rebuild the strength gradually, but if we don’t try- it will never happen. Baby steps!!!

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