Muscle weakness from standing

[Admiral06]

I was diagnosed with PMR 12 weeks ago and have been quite active since my symptoms and side effects resolved 6 weeks later. Although I have no problem with yard work, gardening, or walking, when I stand for long periods I notice weakness in my legs and subsequent aching thigh muscles that continues for about two days. I first noticed it after standing at the rail of a boat while fishing Atlantic coastal waters. When my legs weakened I attributed the fatigue to working my muscles to compensate for the pitching motion of the deck. Next I got involved in engine work that required me to stand for about 3 hours. Once again, my legs weakened to the point of being wobbly and the aching muscles began the following day. This problem has since occurred 2 times more and it is now obvious that standing is a significant problem for me. Does any one have an explanation for this odd phenomenon?

[HeronNS]

Yes. PMR, and if you are on prednisone that will also affect your muscles, although I didn't notice significant muscle weakening quite so quickly - but then I am not in the same arduous line of work! Is this your occupation, or something you can do voluntarily?

[Admiral06 in reply to HeronNS]

Thanks for the reply HeronNS, I had this problem while changing the ignition system on my back-up generator, replacing a zone valve in my home heating system, and running 1" gas pipe to a new appliance. While I can hire someone to do these repairs, it would be a first for me. I guess my real problem is why can I walk 1-2 miles without a problem, or turn over the soil in a raised vegetable bed, but feel significant muscle fatigue from just standing. I can't make sense of it

[PMRpro Ambassador in reply to Admiral06]

Primarily because standing requires a great deal of effort from your back muscles to maintain the position. When you are moving they are also constantly changing position and don't get tired in the same way. In PMR sustained actions require your muscles to keep working without any rest - consistent movement provides that rest period.

But to be honest - I wouldn't complain too much if you can manage all that! Many patients would love to be able to walk a few hundred yards.

[Admiral06 in reply to PMRpro]

Thanks for your knowledgeable reply. I'm sure I still have it pretty good, but unfortunately this standing issue is a recent symptom that is troubling. I am also painfully aware that my condition could worsen in the future for any number of reasons.

As I write, my physician's office called with my latest labs: My Sed Rate fell from 48 to 16 and by CRP dropped from 41 to less than 2.9 in 12 weeks. The studies I have been following indicate a median of 16-19 for Sed Rate and 10 for CRP after 12 weeks. I guess this puts me at average for the ESR, but much better than average for the CRP. I have been off alcohol since the onset of the PMR, but on Friday night I think I will have a cool one.

Does the risk of GCA decline as the systemic inflammation goes down? Is this reduction any indication of prognosis?

[PMRpro Ambassador in reply to Admiral06]

No - the markers fall because the pred is managing the inflammation, it is doing nothing about the underlying autoimmune CAUSE of the inflammation, it continues to chug away in the background and could increase in activity at any time. All those figures are doing is showing you are on at least enough pred. It may well be you could manage on less - but there is only one way to find out.

[HeronNS in reply to Admiral06]

Haha. Before I was diagnosed I lived (barely) through a winter from hell. I still cannot understand why I was able to shovel snow for an hour yet had trouble standing up from a chair, climbing out of the bathtub or getting out of bed! Must use different types of muscles I suppose. I find it really hard to stand for long periods of time now, over 1 1/2 years into the pred journey, worse now than it was at the beginning. Yet I can do those other things which require flexibility with no difficulty whatsoever!

[Brixhamhampster]

Hello admiral06. What you describe about weakness standing is exactly what I experience. I am still able to walk a couple of miles a day, look after my allotment in small doses with regular rests but find standing to cook meals exhausting. Pmrpro and several others have given their usual helpful responses which I have also been grateful for but I just wanted to add my twopenoth to let you know that someone else has the same experience. Thanks to these wonderful people I have had guidance about how to reduce my steroids (now doing dead slow from 8 to 7 which I am told is one of the tricky reductions) and so far so good. I have had little or no advice about how to deal with this condition so this forum is a lifeline. I am in awe of what you are managing to do but do remember to be kind to yourself as well. It could be that pushing ourselves too hard got us where we are!

[Annodomini]

Reading your post has made me realise that the back ache and weakness I had been feeling just from standing in the kitchen has gone. I've had Bowen therapy for several months because of a severe attack of what seems to have been piriformis syndrome which had me bent double over a walking stick. So - yes, PMR did cause me to have trouble simply standing - as well as walking - for five years. Now I am sure that the PMR is on the wane and I am equally sure that Bowen Therapy has worked its magic on literally crippling pain.

[Admiral06 in reply to Annodomini]

Thanks Annodomini, I just read about Bowen Therapy and will keep this in mind.

[Brensy]

Hi Admiral6 I was diagnosed with PMR January this year, the symptoms you describe are exactly what I get when I stand or walk for more than 2 minutes and I haven't been near a boat for ages! It does make you feel very unsteady and a bit nervous certainly affects your confidence. As far as I am aware it is symptomatic of PMR. The aching muscles kick in with me straight away though and depending how much I have done this last last from a few minutes to the next couple of days, it's all about pacing yourself to minimise the after affects, you do sound very active which unfortunately I no longer am. Good luck with your recovery

[Whittlesey]

Hi Admiral06, would research meralgia paresthetica.

I have it, and your symptoms describe it. I also have GCA. .MP can cause thigh pain and spasm and many have difficulty standing.

MP is a rare disease. A neurologist who is familiar w MP can help.

Hope this helps and hope you feel better

Best to you, Whittlesey

[Admiral06 in reply to Whittlesey]

Hi Whittlesay, It would seem the number of diseases with acronyms is never ending and I now have an acronym that helps with at least two of my symptoms - SIR - Sit In Recliner. Though this it is not in my nature, I obviously need to do more of this; at least until I can taper lower. Thanks for the input. .

[billinSurbiton]

Hi admiral06:

You must be a hard Bull of a man if you are maintaining that level of activity. Obviously, your career and lifestyle have kept you active for many years, and your strength will help you get through this perplexing stuff. With respect, I will say that you are setting the bar too high for yourself. I'm no expert, starting out with treatment, but I wouldn't DARE try half the work you describe; I just collapsed in the garden, crouching down to tend to a pot. After 40 minutes of quite light work, everything gave out. I had to lay on the pavement until I caught my breath, and managed to flop into my bed, huffing as if I did a half-marathon. it's so very frustrating and upsetting.

Unlike you, walking and other activity quickly exhausts me, and gives me leg pain and stiffness for a day or 2. STANDING doesn't seem to be an issue–but then I'm trying to recount a recent time when I stood for a long time--- I will have to give it a try.

All the best,

Bill