Do you know how to tell?

I never realized at first that I could not handle back rubs etc. hot tub jets hurt..... I did not know it was a part of this illness.

So, the other day I was pondering on how will I really know if I am done with all of this. Basically I think it will be a matter of massage. Can I handle it or does it still cause pain.

Today I rubbed my thighs not too deep but there was still pain.

How many of you have this muscle pain? I have no muscle pain with movement or excercise just with massage.

Is this part of PMR GCA or something else? I have had it since the beginning.

27 Replies

  • Good question I've been on Pred since late Dec. My PMR symptoms initially were confined to my shoulders and hips with a little carpal tunnel into the wrists and palms. But as the months have passed, (I'm at 15mg tapered from a short term high of 20mg) my legs seem to have gotten involved. Not pain, the weaker or heavier, or tingling. Is this a new symptom of PMR a side effect of Pred? If it is PMR, then the tingling was an early warning sign that no physician ever caught. It is a real conundrum.

  • To clarify. I have had the tingling since a year before the PMR fully declared itself. But the heavier/ weaker is new.

  • I think I know the heavier feelings. I can be walking from the car to my stairs and not think anything is wrong.....then I try to lift my legs to climb the stairs and I could not put words to it but after what you said they do feel heavy.

    I love upstairs as it is so private compared to down. So nope I will drag myself if I have to before I give up my penthouse. That is the nickname for my place as I have the best views of everything...

    Now if I could get out the old cigarette smell I would be an even happier camper.

    I find like today I went to the Dr. Office to pick up some paperwork and then a quick in and out of the store with only $20 worth in 2 small bags and by the time I got home and upstairs I was soaking wet from the exhertion and now my right upper arm muscle hurts.

    I want my old body back. This is nuts to do a little then lie down. Ok I am whining now. I have on the good side lost 4 lbs. I miss my toast however......

  • Morning, Have you tried a solution of 50% white viniger 50% warm water use it to wipe down all none porous surfaces my present husband was a heavy smoker when we met when I moved into his house this is what I did. ONE THING GET HELP I mean it. Olive

  • Hi Olive,

    Before I moved in they cleaned the walls then put some sort of sealer on them and then they painted. They said it would go away soon. Phooey.... They came back and wiped out my cupboards with vinegar as some idiot used a highly fragment spray inside all of my cupboards. That is actually worse than the cigarettes. I have an open bowl of vinegar in the worst cupboard and I can't even smell vinegar. It did not help to use the vinegar. I am wondering if good old hot soapy water might work. I simply don't have the energy to do it.

    I don't know if it is finally disappearing or I am getting used to it.

    My front door and all my windows are always open no matter how cold it gets. I don't mind the cold in fact I prefer it.

  • From the start of PMR (10 months ago) my shopping alerted me that something was wrong. If I pick up a 4 pint milk container it feels as if there's a gallon in there! When I shop, I have to use twice the number of bags and only half fill them, otherwise my shoulders and arms are really painful. My legs feel very heavy at times, especially walking up a slight incline - it feels like a steep hill. As Hindags describes, I've also had tingling in my muscles.

    These symptoms give me something to monitor and now that I'm down to 7mg pred, tapering to 6mg, they've been troublesome, so I'm sticking at 7mg for a while. 'Listening to my body' at last!

  • Wow you are down to 7 in 10 months. That seems a bit fast. Don't be in a hurry as I was and ended up with huge. Flare at 7 and had to go back to 20 to get it under control I also have GCA. I am now at 15 and having some issues with my right eye.

    Eye physician says don't take the 60 mg the Rhuematologist told me to take for 10 days as he checked my eyes and all he found was increas d pressure most likely from the pred he says. So in 1 1/2 weeks I go back in for testing.

    In the meanwhile I am having hot flashes and feeling Puney and my head hurts and my eye aches. I sure hope the eye guy knows what he is talking about. He is a eye physician not an optometrist..

  • I've always felt like I was walking through wet sand or cement.

    All these things sound so familiar.


  • Oh my favorite word and for a Chaplain it usually doesn't go over well.

    But sometimes it is what it is. Be real is my motto..

    Do you ever fall. I do and realized my left foot thinks it has lifted high enough just to catch the lip of something and down I go. But now after 3 really bad falls I tend to keep my 👀 on that lazy left foot.

  • The other way of looking at it is that these aches stop me over-doing things, which I'm sure I would be tempted to do, if I was 100% pain-free. I think they help me protect my muscles and ligaments from damage. Let's try to turn the negative into a positive! I know it's frustrating plodding up hills I used to be able to 'trot' up, but it won't always be so.

    I'm in cheerful mood today, as the sun is shining in West Yorkshire. I just pulled up one weed in the garden! (Left the other 999 to grow on.)

    Hoping you all have a good weekend.

  • Hello

    Due to very fragile/thin skin caused by long term use of steroids, it's very painful for me to have a shower with a fierce jet stream, and I have to turn mine right down to almost a trickle, it's mostly painful on my arms and legs. When I was first diagnosed with GCA I couldn't bear the spray on my head. If I should rub my body too hard or by accident I would bruise straight away. So mine is painful skin to the touch and not muscular.

  • So if you rub your thigh muscle it doesn't hurt?

    I found a huge bruise on my inner thigh right over my knee today. Have no recollection of hitting it. The skin on my arms tears when I bump into counter tops etc.

    I should buy stock in band aids.

  • On the other hand - I like a hot shower with the more intense spray. I feel I can move better afterward. Tried massage once or twice after a flare. Gave lots of information ahead of time so the person could read up. It did not bother me at the time but I was sore several hours afterwards and l felt better then I started after two days. I guess I'm saying we are all different. I seem to be prone to myofacial pain/knots and piriformis syndrome so maybe that makes the difference.

  • Now I have a few more things to look up lolololo. Pisiformis doesn't even sound good lololol. This stupid iPad puts words in where I spelt different. I shall not correct it this time because the spelling they chose is funny.... Try and tell someone that you have pisiformis and see their reaction.

    Please I am not making fun of what you have.... it is just the dark humor us old nurses have. We have to laugh to keep happy endorphins racing thru our bodies zapping all the bad guys.

  • I have always had tender skin with PMR - you know how your skin sometimes hurts when you have flu? Even wearing clothes hurt at times.

    Do you mean that muscles hurt while you are rubbing them - or after? If you have any degree of myofascial pain syndrome then rubbing can release the cytokines that cause the inflammation - and until they are washed out of the body you may have pain. But I also feel some pain when I press hard on my thigh muscle - but I have no idea any more whether that is normal or not!

    At the moment I am having myofascial release therapy by a rheumy at the local hospital which involves her exerting heavy sliding pressure with her thumbs on the tight muscles in my shoulders - it hurt dreadfully the first time and produced bruises (I am also on an anticoagulant), hurt far less the second time. Before she started even firm touch on my shoulder muscles was uncomfortable.

  • Yep that is the only time my muscles hurt is when I rub them. I don't rub them normally it was simply to see how sore they are.

  • Hi Lin,

    I get pain in my thigh muscles after walking any distance, it goes away if I rest for a while, also pain when trying to massage the area.

  • Pain in your thigh muscles after walking that goes with rest is typical of claudication pain and merits a mention to your GP (who probably won't recognise it) and also to the rheumatologist. It is a typical symptom of GCA.

  • My legs are terrible! They are tender and sore as if bruised from top to bottom, as well as weak and heavy. I describe them as "wet cement noodles". The longer I'm on my feet or walking the worse they get. If I walk for an hour or so e.g. doing shopping it's almost impossible to do stairs. I need a railing on at least one side to pull myself up.

    They were like this for more than 8 years pre-PMR diagnosis and I saw many specialists without any diagnosis. After my total body melt-down and diagnosis of PMR, the docs figured the problem all along with my legs was PMR.

    Three years later and down to 10.5 mg from 40 mg, with a couple of flares in between, my legs are still the same. No 'pain' per se, just this incredible heaviness and soreness to touch.

  • I also have heavy legs and I have fallen due to it.. It feels like I have picked up my legs and the next thing I know I hit the ground.. After 3 bad fall nothing broken just bruised bad I now watch my feet on stairs and when I step over something...

  • The leg heaviness and very weak in the arm muscles all sound familiar. These are some of my less obvious symptoms I had about a year before I was diagnosed with PMR. Also shortness of breath. The leg heaviness was striking because I've always enjoyed a good walk with my dog, and it got to the point where I was very hesitant to go out anymore, because of the leg heaviness. This is the first time I've heard of others complaining about it however. My arm weakness was such that I thought I was getting Parkinson's (like my Dad). But I was tested for it and I don't have it. I hated going grocery shopping because I knew I would have to carry the bags into the house and it was becoming such a chore due to weakness in my arms. The shortness of breath is better now - I see a pulmonologist and I have a steroid inhaler. I no longer have the heaviness in my legs since starting the prednisone protocol and my arms don't seem to be as weak either. I am down from 20 mgs to 8 mgs at this point. Not sure how I'm going to do on 7 mgs - which I will wean down to next month......

  • I had shortness of breath and even wheezes but when they sent me to pulmonary doc he was amazed at how great my lung capacity was. My numbers were high 80's to high 90's. He said it was remarkable as I was a heavy smoker until 1996.

    I was so happy to hear about my good test results which he repeated because he couldn't believe it that I forgot to ask about my shortness of breath.

  • I smoked for 11 yrs when I was younger. Quit when I was 30 yrs old. I am now 65. Anyway, I always worked in a smoking environment. So second hand smoke until the mid 90's when they introduced the smoking ban. I assumed I was getting COPD or something when I started having shortness of breath, but the pulmonary doctor said no. She said I had restricted airways with an asthma component. Hence the steroid inhaler 2x a day. (Not albuterol - that didn't work for me). I feel better on the new inhaler. Still somewhat short of breath, but not as bad.

  • Nymima I was going to tell you about my cart I use for groceries.. Hoppa 23" lightweigt wheeled shopping trolley best $34 bucks I ever spent..

    it holds 3 bags inside n I can hang 2 more outside..

    It takes all the weight and makes it a lot easier.. I can even pull it up my stairs ... I got it in Amazon USA and I am sure their are other sellers.

  • I will definitely look at this!! TY!!

  • Ty I posted a pic of this on a new message.

  • I have an inhaler. I haven't used it in a long time so can't remember why I have a new one. Foggy brain. If I was going on a short hike that involved a hill I would use it at the bottom to get me to the top. That was pre PMR..

    I was told I have asthma back then I still think it was allergies inducing sob

    Who knows...

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