PMRGCAuk
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Muscle Weakness and NO Stamina

I've just come in from our communal garden of the building, and I'm again, upset and frightened. ALL I was doing tending to few potted plants== no big flower beds, very LIGHT digging, 4-5 medium sized pots. I tried it out, because the weather is so nice, and, with a bunch of new medication, I can walk again--- MOSTLY pain-free, with very little stiffness--- almost normal! ..almost.

But, after 40 minutes, and a short walk to fill up with some water, I crouched down (squatted down?) to look at a small pot. I did not have the strength to stand back up; my right leg simply gave out, and I rolled onto the pavement, creating a bit of a scene.

I'm in bed now, still breathing heavily, sweating profusely (common with me) feeling as I used to after a run. Polymyalgia Rheumatica? Can it do this?

Also, though I can walk more freely, I still have the pronounced drunken stumble. My sense of balance has become very poor. I know I lost one job (at least) because the interviewer, believed I was drunk, and totally blew off my explanation.

Don't know what to say more, except -- Damn.

Bill

28 Replies
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Hi Bill,

Damn indeed!

Unfortunately, even though the Pred is helping the inflammation caused by your PMR, and therefore taking away the pain you had previously, it’s doing nothing for the underlying illness per se.

That means wobbly legs are par for the course for one thing, and you are not back to normal! Both the PMR and the Pred can affect muscles- so a sudden spurt of activity will leave you feeling like you’ve been run over by a steam engine! You need to pace yourself, that means doing something for 10 mins or 1/4 of an hour, and then rest for 5 mins! I know it sounds ridiculous, and maybe embarrassing but it’s true! Little steps, little steps with rest in between!

Although the sun makes us feel better, it also makes us think we can do more than we actually can!

Hopefully, this will be a one-off, and in future you can explain to others that even though you may want to do more, your body won’t allow it! Some will understand, some won’t!

It’s a bu##er, but it is what it is - for the time being anyway!

Take care.

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Oh dear bill. I am afraid it is par for the course. About 5 to 6months into PMR I was treated to a spa day for Xmas. Whilst my sister etc used the gym I literally just swam in a lovely warm pool and walked in the water for about an hour. I tried to get up the very easy steps...not a grab thing...about 5 steps that stretched the width of the pool. My legs just wouldn't work. It was like the ministry of silly walks.

I have been doing my first bit in the yard for a good while. I got a small still and sat in the shade with a scarf that has gel cooling in it and put garden rubbish into bags. Ensuring each bag was light enough to carry to the car eventually. I drank lots of water and every 5 mins I stopped and just rested for a while. After an hour I came in and laid down for a while.

The only way to get through the bloody thing is to pace yourself. Consciously plan the tasks and build in a rest. This will allow you to build stamina. People don't realise how fast stamina is depleted. Only takes a couple of weeks to lose most of your fitness. Please take it easy tomorrow. Hope you are not too bruised from your fall.pmr and pred can cause excessive sweating. Hence my cooling scarf.

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I have very little physical energy and have found the same as you. My muscles aren't so weak but I've experienced going out to the garden to do what I saw as a very small job and ended up completely exhausted. It is frightening. I'm staying with my daughter in the US right now and I was frightened before I came about whether I'd cope with the journey and how much I'd be able to do once I got here. it's actually been OK but it's the not knowing that's difficult isn't it

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I to decided , beautiful day , do A spot of weeding , knelt down , couldn't get up ,o/h came in handing , have rested on and off rest of the day , to have o/h say , you only did A bit of weeding, why are you so tired and puffy ? Couldn't make it up!

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Bill, oh dear, but sadly yes Polymyalgia Rheumatica can, and does do this to us. I fell over several times and once on the ground was totally unable to get up again because there was no strength in my legs. Once, forgetting for a split second that my legs didn’t bend, I quickly stooped to retrieve something low down and then literally rolled in a heap on to the floor calling for hubby to come and rescue me.

I, too, experienced the lack of balance problem. Once my walking improved, I joined an 8 week Nordic walking group run by Age Concern, and found that the walking poles helped enormously, with my balance improving with each class. Also an excellent way to offset the risk of steroid-weakened bones. Hope you feel better after a good night’s sleep.

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Oh Bill no wonder you are upset and frightened by what happened today. It’s been a shock to the system. I would say that balance problems are very common with PMR and are a Pred side effect. I can remember getting stuck crouching down to the level of an upset person at work and not being able to get back up. This was before I was diagnosed. I am sorry about the job interview. That sounds very unfair. I hope you recover soon, maybe mention it to your doc to ensure your BP is ok etc.

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Are you still taking the Gabenpentin? Is this a reaction to this drug and not to the PMR/prednisone? although I too gardened yesterday and had to come in and nap. But I don't have the wobbly legs... just tired. not the lurch.

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Hi yogabonnie: yes, I’m still taking Gabapentin , and recognise the side effects of that drug; however, taking it has finally relieved the pain and stiffness in my legs which was actually rendering me incapable of waking— so it’s a trade off I’ll accept. The side effects were strong the first dose,but have diminished quickly...

The wobbly, drunken stagger has been there from the beginning; it was the problem which sent me to the GP at first ( that, and the numbness in my fingers)

The tiredness has been there all along too— I guess I was hoping the medications would help with that...

oh well ..

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The original 5 "PMRFighters" - we used to call it the Polywaddle.

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I am using this from now on. I SO have the polywaddle.

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As my Mum would say “everything is skew whiff with PMR” blast this awful condition - pacing is the only way to go as I have found out over the past 5 months - slow but sure like a tortoise 😀 with plent y of sit me downs during the day.

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Hello Bill,l have had PMR for nearly two years now and although on a low dose of preds l have a lot of trouble with my legs,l cannot kneel down as that makes my legs go numb which goes on for days,it is also impossible to climb up onto a chair..l also suffer from heat lntolerance,this makes humid and hot weather hard to cope with.l am sorry that after enjoying a little plant potting,which can be very therapautic ended in such a distressing way.l have a lot of things to do in the garden but can only do a little each day,and needless to say l cannot kneel down and can only bend over which l feel is a rather ungainly way to pull up weeds etc...l sometimes feel off balance just standing still,PMR is not always easy to cope with and it is hard for others. to understand the way it affects us.

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Thank you SO MUCH all of you who took the time to reply. It helped me a great deal. You are all so kind 🙏🏼

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Bill, I have experienced theses things too. Now I’m invited to go with my daughters and grandchildren to go on a trip to Tennessee to visit my oldest grandson over Mother’s Day. I am totally stressed about the trip. I’m worrying about being able to do it. I told my daughter up front that I would not be able to keep up and if I chose to stay at the hotel to rest awhile they would have to understand. I haven’t decided whether to go or not. I would normally love to go.

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If your children understand pacing and you can be somewhere together without hiking all over you can have a good time. I just went from Illinois to California over Easter. I had a wonderful Airbnb with a private deck and my kids came to me. We went on half day trips and all went well. I find flying the most difficult even with assistance. One assistant told me she couldn't get me there fast enough so I was better off to walk so I did so I could catch plane. Fly direct if you can.

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We are driving down. It’s about 650 miles. I have told them that sometimes I may just have to stay at the hotel. We are going to Memphis and staying at The Guesthouse at Graceland so I’m sure there is plenty to do there if I don’t go with the family sometimes.

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Oh goodness...I can relate. I have had GCA and PMR for six years and I cannot pass the DUI test in the US. I have fallen multiple times ...so watch your step😂. Some of the oroblem with me, I think , was the prednisone I was on was too strong. I am now on prednisoLONe and that seems to be working. You might just try an other form. Good luck ..hint...it is the getting back on your feet that is the biggest problem...so have a cane handy.

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Sorry - but yes. The pred just manages the inflammation and so the symptoms are improved. But the actual disease process is still active and attacking your body tissues and leaves your muscles intolerant of acute exercise. It will improve - but it will take time and patience and knowing your limits and sticking to them.

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Does exercise intolerance and low stamina generally get worse as one tapers? At 6mg, I'm definitely less functional than at 9 or 8.

I still don't feel sick as I did when I began. Markers are still great, and no stiffness. The weak wobblies haven't come back, but late afternoon fatigue has set in along with a general weakness. I still seem to do best keeping moving rather than being sedentary but it is more of a push to do that.

My big concern is whether all the exercise I did early on to stay strong has hurt as much as helped. I recently stopped exercising for a while due to pain between shoulder blades and what has been diagnosed as rotator cuff or bursitis (on physical exam) but my physical therapist has encouraged me to resume with a new set of exercises easier on shoulders and focused on the spasm between my shoulder blades. Also my physical medicine doctor consulted with my rheumy and suggested that I stay at 6 for a while to help with exercise tolerance while I work with the physical therapist to deal with the new aches and pains. I started this morning. It felt very good to start doing these new exercises but right now, a few hours later, I'll be taking a tylenol because of rebound pain.

When might this exercise intolerance start getting better?

1) What does lower Pred have to do with it?

2) What does PMR have to do with it? I don't feel that the PMR is actually active, but the damage done by it hasn't healed. Does that make any sense?

3) How does adrenal sluggishness interact with the above?

Is there any research about this aspect of the PMR journey?

Lots of questions, Sorry.

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"At 6mg, I'm definitely less functional than at 9 or 8."

Probably your adrenal function is lagging behind.

Above about 8mg your body needs to make no cortisol. Below about 10mg you have to start making your own - exactly where depends on the person.

PMR doesn't have much to do with it - you need enough pred to manage the symptoms, but you also need enough to replace the cortisol your body needs. But they are different functions...

If your adrenal function is slow - it will take longer to catch up, that's all.

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Thank you so much. That has been my theory and I resist going up on Pred to avoid the slump because I fear it will just add to time on Pred.

Besides, what is really weird is that once I have passed through that late afternoon or early evening slump (it varies) I do get my stamina and energy back.

Getting back into some kind of exercise routine, albeit a wimpy one, has helped my mood the last few days. I just have to be very disciplined about getting to bed early enough to get up early enough to do the exercises first thing.

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"I resist going up on Pred to avoid the slump because I fear it will just add to time on Pred"

What dose you are on has nothing to do with HOW LONG you will be on it. You will need pred as long as the underlying autoimmune disorder that causes the inflammation is active - and NOTHING will change that. The pred has nothing to do do with that part, it is mopping up the water that is overflowing from the bucket the dripping tap of PMR is filling. Only repairing the washer that is letting the tap drip will stop that.

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My personal analogy to PMR.

Some years ago, maybe 20, I got xerox toner all over my hands at work. The letters on the copies I handled came off leaving a black powder on my hands. I really was unaware that it was toxic. I wiped my hands off and went back to my office. Only got to do a thorough cleansing hours later. The next day I awoke with big welts, itches, and bright red patches wherever my blood had pooled over night. I was given atarax and the itching stopped. Over the course of a month my hands and feel peeled as if from a chemical burn from the inside.

The acute inflammatory phase was over, but for the next two years, though I no longer had any redness, swelling, or itching, my skin overreacted to any little insult from the outside. Even a rush of excitement caused really bright facial flushing. Being a psychologist I decided my skin had PTSD. (lol) The overreaction stopped after two years.

This is how I think about PMR. The acute phase with rampant cytokines may be controlled by Pred, or may even have calmed down by now, but the tendency to overreact, to flare, will no doubt be around for a while. I'm only 16 months in.

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PMR is not an acute problem - it is chronic, a tap dripping into a bucket and eventually overflowing to cause a flare. If the cause of the PMR inflammation is active - you need pred. If it has burnt out - you won't.

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My balance is completely shot. I fall over on a regular basis and I’m amazed I haven’t broken anything thing yet. I always seem to fall on my knees which isn’t good as I have had them both replaced. I’m afraid I’m going to do them some damage. I have had some wonderful bruising, literally from knee to toe. So between PMR and pred have no hope 🙄

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So sorry you are having such a struggle.

How long have you had PMR and how much pred are you on? Is your balance shot from weakness or smtg else? Can you feel the lack of balance coming on or is it always bad these days?

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Hi I have been diagnosed just over a year. I’m on 9mg pred currently as I struggled to reduce in early months.

No idea why my balance is shot tbh. I have no pre warning just go. Went to GP about it last week so having blood tests and X-rays done. So will see if they point to anything.

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Don't know where you started a little over a year ago, but it seems to me that 9mg is a good pace.

No increase in weakness or fatigue before the balance goes? Wow, that makes it harder to cope. Requires a lot of courage and vigilance.

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