Heavy legs with GCA

[Bluey-1]

I have struggled for some days having returned from a wonderful holiday where I slept better, relaxed and generally felt more ‘me’. It has been up and down this week. I had a lot of recovery rest for a few days on our return so paced myself. Yesterday I felt well and had a couple of short walks. Last last I hardly slept and today feel washed out. My legs feel very heavy. Maybe I’ve done too much. I’ve been on 20mg steroids for 5 weeks with bloods due this week then a rheumatologist review next week. Is it normal to have this heavy, weak legs feeling due to either / both GCA fatigue / build up of insomnia / weak muscles / steroid effects? This disease seems to manifest individually and I wondered if there were others who have experienced similar. Such a contrast this week to how much better I felt on holiday.

[DorsetLady PMRGCAuk volunteer]

Think it's probably due to too much activity on holiday, lovely as it was.. and quite a normal reaction... just rest as much as you can for next few days, and hopefully things will return to as they were before...and plenty of TLC.

But just make sure it's not the beginning of a flare...

[Bluey-1 in reply to DorsetLady]

Thanks DL, hopefully things will settle but a flare is my concern. I have just emailed my rheumatologist as I note in the report from my 14/9 appointment it states I should contact them if there are any problems prior to the next appointment. I’ve outlined specifically the issues I’ve had this week. She may say she needs to see blood test results and I understand that but I wanted to put on record the symptoms I’m currently experiencing and asked her for advice. I guess in my head I’m worrying about blood flow in my legs…or is it just muscle weakness / general fatigue due to poor sleep. I’ve been doing so well but let worry get the better of me today as I’m feeling so washed out.

[DorsetLady PMRGCAuk volunteer in reply to Bluey-1]

Understandable, especially as you were feeling so good last week... hopefully just a blip, but good to get it on record.

[piglette]

I have heavy legs, which I blamed on the steroid as there is fluid retention too. When I mentioned it to the rheumatologist he said “yes you can expect that”!!

[Miacaro45 in reply to piglette]

I have been on high doses of Prednisone for over 2 years. I start to taper and end up having to go back up for various reasons. At this time, I feel I am experiencing steroid myopathy where my arms and legs feel very heavy at times. Not much I can do except for exercising and continuing down on the Prednisone.

[piglette in reply to Miacaro45]

I had thought that too. In fact I also get a pressure feeling in my feet. I was having lunch with a friend who has had chemo and she said she had a similar feeling in her legs. We both decided that there was nothing we could do, but live with it.

[PMRpro Ambassador]

I have to ask - how did you travel back? Could it be Covid? My daughter caught it on a Sunday night at work and felt rubbish all week but put it down to the stress of the previous week when her husband had been in hospital. At the end of the week she had to test for her next set of shifts - bingo, positive.

[Bluey-1]

Thanks for your replies. This site is so supportive. Days like today feel isolating. We flew back from Faro and on both flights I was relieved there was no coughing. I wore a mask on the plane but noted I was the only one. I have just done a Covid test, it was negative. I did have the Covid booster last Friday and apart from a sore arm at at the site of the jab I was ok over the weekend and only felt really grim today. It’s been up and down since our return but I must say worth it as I felt much better there and know I’ll be ok for future trips, especially now I’ve discovered airport assistance. Today I wrapped three presents, put together ready made hummus, avocado and toast for lunch and prepped salmon in foil for dinner. Hardly a busy day. I’m exhausted. Husband prepared the rest. Managed a nap mid afternoon which I can’t usually seem to do in the day. I really don’t respond well to steroids in terms of insomnia but I’m sure I’m not alone!

[PMRpro Ambassador in reply to Bluey-1]

The other daughter took 3 days of symptoms before testing positive - and in the end got a positive and a negative within a few minutes but the swabs were from different brands/packs. The LFTs are very unreliable with Omicron.

[toniaell]

I have heavy legs and arms regularly, with me I think its more more off the steroids as I have noticed a difference as I've reduced the dosage. Im currently on 15mg. However at each reduction my arms and legs feel heavy for a couple of days again and then they settle. So hard to know exactly what is causing what !

[DorsetLady PMRGCAuk volunteer in reply to toniaell]

If it lasts for such a short time then steroid withdrawal -affects people differently -I always felt premenstrual for a couple of days.

[Elephants2019 in reply to DorsetLady]

how interesting-at each reduction I gain 2-4 lbs, suppose water weight, but then weight resumes to normal, but takes a few weeks.

[Ridge]

You say you have just had a Covid jab? The first and forth jabs I reacted to. First was a obvious flare after 2 weeks (could be another reason but I don’t think so) and forth was a feeling of malaise and tiredness for quite a while. I probably should have increased the pred a bit?

Maybe a combination of doing more than usual and a vaccine? Perhaps if you hold steady until you see the rheumatologist is the best?

All the best. I’m so sorry.

[Oaks6]

I’m wondering if you are on statins? Apparently it can cause muscle problems. I’ve been on them for 5 years and over the past few months had muscle weakness in my arms and legs.

[Bluey-1]

Thank you everyone for your comments, a lot to consider. I feel slightly better today, legs less heavy at the start of the day, a bonus. I wonder whether it’s a combination of possible Covid vac reaction, muscle weakness due to steroids / GCA or just general exhaustion through poor sleep for months. I’ve never been great after one bad night’s sleep, let alone the steroid wake up alarm every night for months. Last night I tried the meditation approach of focus on breathing, name the distracting thought, back to breathing focus. Maybe it helped a bit during those hours awake. Who knows? That’s the question we’re all asking about this weird disease. From being out of it yesterday I have a friend round for coffee this morning and the sun is shining so it’s a good start. So thankful for your thoughts. It can get lonely and sometimes scary when you don’t understand what’s going on with your body and you have limited energy.

[Devoid in reply to Bluey-1]

hi I have experienced heavy legs and got to recognise when it was more likely to impact on what I could do in the day. Before I got out of bed I would try and lift one leg at a time about a foot off the bed, if I could hold it there for 30 seconds I was likely to have no problems with my legs that day but if it became very difficult or on some occasions I couldn’t even lift my leg I knew to have a restful day. Hope this helps and as with lot’s of things with illness it’s a phase that passes