Arm and leg fatigue

[People1]

Anyone’s arms and legs feel very heavy when trying to do simple tasks like fold clothes? Not sure if this is the 80 mg of prednisone or Symptoms of GCA/PMA.

[scats]

Once the worst pain was under control heavy limbs were my main symptom. Sounds minor in comparison but is very restricting makes everything hard work. I just have PMR.

[People1 in reply to scats]

Thank you so much Scats. How long have you had PMR, what dose are you on now, and do you find the heaviness comes and goes? Thank you!

[scats in reply to People1]

Had PMR 3 yrs just reached 10mg this week walking almost normally for the first time, but not for long yet. The whole process was complicated by needing a hip replacement 18 months ago.

I can't remember any pattern in occurence of heaviness it was just there most days. There are few pavements around here and walking on uneven ground with heavy legs is hard work.

[MayH]

Yes once I started on Pred and the severest pain had gone, my legs felt as though they had concrete blocks attached. It lasted a few months and eventually went. I don’t know if it was the pmr or Pred.

[SnazzyD]

I had that on 40mg so goodness knows what 80mg must be like.

[People1 in reply to SnazzyD]

Believe me, beyond dreadful. So hope I can get advised to cut back though and worried about being on such a huge dude, but with blurry vision my diagnosing doctor upped it from 60 to 80mg. I finally found a rheumatologist who would see me sooner than January. Havecab aoot on Oct 15. My quandary is wondering if I stay on 80 mg my till then. Clueless

[People1 in reply to People1]

Meant to write have a rheumatologist appt on Oct 15....word finder

[pmrkitty in reply to People1]

My vision was very blurry due to the prednisone (I think) and heavy limbs due to PMR. I'm off the prednisone and my eyes are a lot better but still have extreme fatigue and heavy limbs which could be the Fibromyalgia I was also diagnosed with. Oh well, it will all come out in the wash!

[Scarter770 in reply to pmrkitty]

I quit prednisone after 3 years and my limbs are heavy and pain in muscles at night and each day. I will not go back to prednisone. Protracted toenail fungus on left big toe and can’t kill it !

[pmrkitty in reply to Scarter770]

I have the fungus on both feet and I got that before diagnosis and before any drugs were taken. My Sister has it also so I believe it is caused by the auto immune disease, Take care.

[SnazzyD]

Is this blurriness the same as before diagnosis and meds? The eyes’ focus can be messed up by Pred. I’m long sighted and my long sight was hopeless on 40mg. I was also unable to switch from one depth of field to the other without a minute or two of blurry vision while my eyes caught up.

As for tapering, it is difficult because we can all have opinions but can’t really tell you what you should do. Judging by others’ reactions being on 80mg I can imagine you feel pretty desperate for the ‘pain’ to end. Remember it is protecting you for now but it is undeniably a white knuckle ride.

[People1 in reply to SnazzyD]

While I was working on completing a PhD dissertation I had horrendous headaches, neck pain, shoulder pain, nausea, no appetite, sore occipital points on back of head and noticed how my vision was blurry while typing with all going on. So yes the blurriness was a presenting symptom.

[SnazzyD in reply to People1]

Is it the same now? Have you analysed exactly when it goes blurry? Is it random for example or in certain situations. I’m not lessening the urgency to see a Rheumy but it might be useful really homing in on what you mean because the eyes are so affected by Pred and it is difficult to see the wood for the trees and for the doc making the decision.

[People1 in reply to SnazzyD]

Mainly goes blurry while reading or looking at computer screen. I am now wondering if the Pred itself is also contributing. Well still trying to push to get in to see someone before Oct 15

[SnazzyD in reply to People1]

Pred certainly meddles with the focusing muscles of the eye, as with all your muscles. Well, maybe keep analysing so that you can give an accurate description of your eye symptoms so they don’t put the dose up unnecessarily if it really is Pred fuzz.

[People1]

Thanks SnazzyD. Getting used to all the new names such as Pred fuzz. Great way to explain it.

[patriciawhite]

Yes I do but I haven't been on that level of Pred to be fair so it's better answered by those who have .I have PM and other things but its the PM that seemed to cause the heaviness ,its frustrating and upsetting isn't it .

[PMRpro Ambassador]

The concrete overcoat is a common complaint - at all doses!

But do remember you have a serious systemic illnes AND are on a VERY high dose of pred - would you be surprised you struggled to fold the washing if you had real flu? Or maybe you've never had it - I struggled to get out of bed to go to the bathroom for 5 days with real flu - and when GCA is in full swing it has a similar effect. The pred doesn't alter that, the actual disease process is still chugging away in the background. Pred just relieves the inflammation - not the fatigue:

healthunlocked.com/pmrgcauk......

[Wraysbury in reply to PMRpro]

Concrete overcoat is a perfect description!

[dkusa]

i have gca. limb fatigue for over a year. be sure to have thorough exam of eyes. good luck. dave kelley

[Gaijin]

I've found that the feeling of heaviness comes and goes. For me, it's a sign of the PMR/GCA not under adequate control. I may be wrong but for me, the heavy limbs and muscle fatigability (which is almost the same thing to me) have been my main symptoms.

Hope you get relief soon.

[Gaycreasey]

Hi People 1. My problem has been weakness in my arms and legs but I also experience the heaviness and inability to even fold the washing! I had been on Pred solution since Jan 2017. Started on 15 mgs and now tapering to 5.5. Was doing fine and then I moved house and had to register with a new GP. Disaster from the word go. To begin with before I had even seen a doctor I received a phone call from a man telling me I was to go on to Pred soluble, reason being Pred solution too expensive. I complained and he told me I had already had this before so should be ok. WRONG!!! I was given a months supply, and 3 weeks in, all the old symptoms are back. Acute dizziness, weakness in limbs, neck pain, fatigue and brain fog. Went back to GP and saw a locum ( all of 12 years old). She asked me why I was taking steroids ( hadn’t looked at screen). When I told her it was for the symptoms of pmr she looked blank and then said I should have been tapering the steroids and should have been off them in a year. I was most rude and said that if she believed that she didn’t know very much about pmr. She reluctantly gave me one months supply and told me to come back for a consultation before they ran out. Seriously, are there any training courses for doctors on pmr? Whatever age, they seem to know nothing about it.

[Hidden]

That heavy, aching feeling (like jetlag) for me went on for months lessening a little each time the prednisone dosage is reduced. I found it took about 3 months for my body to adjust to the new monthly dosage. Going from 60 a day to 1 a day it is a long haul. I still get waves of weakness washing around my body.

[readingbooks]

yes

[readingbooks]

Yes, I have the heavy arms and legs symptoms limiting even holding up a book or newspaper etc. Feels like muscle weakness generally. i have pmr and am on 8 mgm of Pred having upped from 6. It seems to come with the territory. For now I am just persisting and hoping !

[People1]

Thank you so much to all who responded! You are all such angels to help and support one another, as you have.