Help for jelly legs?

[agingfeminist]

I am fortunate to tolerate pred really well. On 60 mg for almost a month for GCA and PMR two and a half years ago. Early on got alarming muscle wastage...upper leg muscles primarily. Now chugging along at 4 mg (with periods of deathly fatigue) but NO improvement in muscles. (Only other side effect...large bald patches)

I have tried gentle exercises but 2 minutes is my limit. After 5 minutes walking my muscles are jelly. I do clean my home, look after my garden...but only for short periods at the time.

Walking is the real challenge. I have tried to do a few minutes everyday. But no stamina and no improvement - in fact they feel weaker.

Suggestions really welcome...is there any light at the end of this particular tunnel?

[PMRpro Ambassador]

Have you asked for specialist physio advice?

[agingfeminist in reply to PMRpro]

really difficult/impossible to be sure to get good advice and I can do so little exercise without my muscles complaining that I am very wary of any physio. If I do my minimal gentle exercising will it ever get better or can the myopathy be for life?

[PMRpro Ambassador in reply to agingfeminist]

Mine resolved just by switching from Medrol which had caused it to prednisone. I'd had no problem with prednisolone either. I'd been on crutches much of the time because of an achilles problem - once I was on prednisone and even walking with crutches they started to recover and bulk up again.

[agingfeminist in reply to PMRpro]

not sure if this is encouraging or discouraging. I suppose the fact that the myopathy was reversible is encouraging

[SheffieldJane in reply to agingfeminist]

When I first began with PMR, I was really quite disabled. My wonderful Yoga teacher offered to do yoga, on me basically. She would move and stretch my limbs and very gently, increase the way I could move. I just laid there while she clambered about. It was a really lovely experience that helped me at a scary time. I don’t know if this is a common treatment on offer or she was just my special Angel. I became definitely more flexible.

[agingfeminist in reply to SheffieldJane]

Definitely your angel! What a wonderfully caring person.

[SnazzyD]

I had the same issue, starting at 60mg I thought I was doing well in the first couple of months after diagnosis (March 2017) and then my muscles dissolved even with daily walking albeit not fast. Previous to diagnosis I was very fit with good muscle definition. I don’t mean the gym look; just the result of doing lots of different activities. I had assumed that when on low doses, as promised by the doctor I would get back to “feeling human” as he said and start about rehab. I had not put on weight due to low carb and had had a high protein diet throughout. However, low adrenal function and a very low threshold for muscle damage and fatigue the transformation did not take place. In fact I ended up with widespread tendonitis, I suspect from what exercise I did do. I ended up with crippling Achilles tendinopathy and a vaginal prolapse due to a stressed out pelvic floor. Both a podiatrist and a pelvic physio spotted hopelessly weak hip and low back and front muscles. So I set about daily barely there exercises and achieved a big turnaround over 18 months. My daily steroids stopped in August 2020 in the midst of long Covid after a year dropping from 1mg to zero. It is only in the last month I have suddenly noticed not being punished for doing ten minutes weeding in the garden and my muscles don’t just pack up, plus I can see some thigh muscles. I don’t know why, something has shifted and I am now tentatively increasing the difficulty of my daily floor exercises. It’s nothing todo with what I decided, I just had to gently keep trying. It took a year of the prescribed hip and abdominal exercises to mend my Achilles and 80% of my pelvic floor with lots of setbacks. I don’t know if my recovery would have been faster without being hammered by each of my 3 Covid vacations, the last one taking 3 months. I also got Omicron twice this year. Of course I am not resting on my laurels but am tentatively upping my game 5 years after diagnosis. No gym yet but perhaps one day.

[agingfeminist in reply to SnazzyD]

I am so sorry you have had such a rough time. But I am encouraged by what you wrote to GENTLY persevere and be patient. I have continued with pelvic floor exercises throughout (always have done those). This is a long journey...I need to constantly remind myself of that.

[SnazzyD in reply to agingfeminist]

Interestingly the pelvic physio said my pelvic floor wasn’t in too bad a shape but the lack of abdominal, pelvic and back strength was resulting in all the stress from internal organs being laid unfairly at the pelvic floor’s door.

[HappyDiamonds in reply to SnazzyD]

Thank you for posting this Snazzy as everything you have written except for the prolapse applies to me. I have GCA, started on 60 now on 6, walking difficulty, muscle wastage, tendon problems, assumed lower doses would make me human again as previously very fit. What I don't understand though is why the medical profession look at you surprised when you mention these symptoms as though they have never heard it before or you are telling porkies/over exaggerating. If I didn't hear others experiences on this forum I would be worried out of my mind. Would you consider expanding on the "barely there' exercises you did please? All I dream of is being able to walk my Labrador properly again, not climb Everest a simple country lane walk would do nicely. 😀

[SnazzyD in reply to HappyDiamonds]

I wrote a perhaps too controversial a reply and deleted it. After 35 years in healthcare I am quite opinionated about the culture in, selection and training in a system that is still tainted by misogyny and various forms of prejudice. I also think that there isn’t much cross pollination between disciplines and if a doctor doesn’t choose to keep up to date with side issues like Endocrinology they stick to what they learned a while ago and like in nursing, ‘old wives’ tales are still rife, even after the dawn of evidence based practice. If a doctor isn’t interested in the patient’s journey then you’ve had it. The great ones are always in demand. Here are a couple of videos of the physio I saw. From that you can find various others

youtu.be/TtIOa1KKDQY(Not working as expected?)

youtu.be/9YSbf9QcQPg(Not working as expected?)

[Cantfindanam in reply to SnazzyD]

Thank you for the videos. I will definitely be trying these

[HappyDiamonds in reply to SnazzyD]

Thank you very much, started the second exercise video this morning.

[Sho-Sho in reply to SnazzyD]

Many thanks for the videos, really useful.

[agingfeminist in reply to SnazzyD]

Thanks you for the videos...I am already doing some of the second video...and so pleased I can do these exercises...just a couple at the time.

[SnazzyD in reply to agingfeminist]

Well done! That’s all I started with.

[agingfeminist in reply to SnazzyD]

Really heartfelt thanks.

[agingfeminist in reply to HappyDiamonds]

Thank you so much for your post. I feel like the doctor treats me as if it is what I should expect if I lie around all day...I really try so hard to do minimal exercises every few hours...but my muscles hate them. My 'barely there' exercises are touching the floor (knees bent) and then reach up high, 5 times. Every few hours. Regular leg raises when lying in bed or when sitting. Marching on the spot 5 times (high knee raise) whenever I get up from sitting/working.

[SnazzyD in reply to agingfeminist]

Hopefully, the standing ones for the pelvic floor should be ok.

[Hunter134 in reply to SnazzyD]

I also have a uterus prolapse.Ive been waiting 6 weeks for an ultrasound but mine is painful.Iam worried thinking iam the only one with pain

[SnazzyD in reply to Hunter134]

I’m lucky in that mine wasn’t painful but I know some for whom it was. It’s a question of degree and why it’s worth getting it assessed. Sorry you’re having to wait so long.

[Hunter134 in reply to SnazzyD]

Thanks for your reply.My dr.hasnt explained anything to me about it so I thought I was the only one.

[SnazzyD in reply to Hunter134]

Sometimes when they docs people for investigations they adopt a wait and see policy regards information until more is known even if they are sure of the diagnosis. Avoiding talking to the patient lest they become worried or receive information that becomes redundant, can condemn that patient to weeks or months of the mind filling in the gaps. There has to be some sort of balance.

[Hunter134 in reply to SnazzyD]

I agree with you.I ve had to take Tylenol for pain which I know isn't good Without it I can't sleep.I did read prolapse is common with pmg.

[PMRpro Ambassador in reply to Hunter134]

"I did read prolapse is common with pmg"

Maybe a lot of people are not talking about it - but this is the first time I've heard it being discussed on the forums. Can't be that common.

[Hunter134 in reply to PMRpro]

I think maybe people just might not talk about it.If mild there is no pain.I just read that it was but who knows?

[PMRpro Ambassador in reply to Hunter134]

Apparently you can have uterine GCA - and that can cause prolapse ...

[Hunter134 in reply to PMRpro]

I hope not.This is bad enough.I wasn't in pain til my dumb Dr told me to do the kegels.Now it's constant.

[PMRpro Ambassador in reply to Hunter134]

Surely if there is already a prolapse, it is too late for kegels?

[Hunter134 in reply to PMRpro]

I thought so too but I trusted him.

[agingfeminist in reply to Hunter134]

I am so saddened that you got such poor advice. Once you have a prolapse it is too late for exercise. If it is causing pain or destroying normal life surgery really helps. I had a major prolapse about 7 years ago...and couldn't walk easily. Surgery restored me to normal life (eventually). I had the surgery with spinal anesthesia and listened to my Walkman throughout. If you are undergoing surgery try to get physio to increase hip flexibility beforehand...legs in stirrups is hard on the hips and seriously delayed my recovery. I am now dedicated to the exercise regime.

[Hunter134 in reply to agingfeminist]

Thank you for the response.How long was your surgery?Iam thinking being on 15mg of Prednisone so doubt they ll put me under as well.

[agingfeminist in reply to Hunter134]

It can vary according to how much they need to do. I had a severe prolapse of the bladder. It took about an hour. I didn't take any pre-surgery medication but I arranged it with the anesthetist (and he agreed I could listen to my Walkman. I chose Bill Bryson CDs). I am very relaxed about being in operating theatres. You need to check with the surgeon how long it will be and what anesthetic options they will offer. I was up and walking around within 2-3 hours of the surgery.

I live alone but a wonderful colleague from work brought me home and looked after me the first day...after that I gently got back to looking after myself.

[Hunter134 in reply to agingfeminist]

Wow your tough!!!!I think mine is uterus cause I had four kids in 3years.Two were twins.I am just wanting to move forward.This started 3months ago and who knows how long it will take with the healthcare today?Lucky you have a great friend.

[agingfeminist in reply to Hunter134]

I had to pay! The surgeon gave me no choice. I loathe private medicine and told him so but needed my mobility back and for the pain to be dealt with.

[Hunter134 in reply to agingfeminist]

Are you in UK?

[agingfeminist in reply to Hunter134]

I come from the UK but now in Israel. Good health care except it has gone the way of the UK with increasing pressure to go private.

[Hunter134 in reply to agingfeminist]

Were you in alot of pain with your prolapse?Iam from one side to the other.Hurts to walk and sit.Sorry for asking but I find it hard to believe that a prolapse can hurt so much.Iam just stressed from the long wait I have to endure.

[piglette]

I go swimming which does help build up muscles a bit. I thoroughly enjoy it too.

[agingfeminist in reply to piglette]

I don't know how to swim and wouldn't have the physical energy to get to a pool etc. You are doing great.

[piglette in reply to agingfeminist]

What about hydrotherapy?

[PMRpro Ambassador in reply to agingfeminist]

Just walking in the pool is a great start - still a palava though!

[Hunter134 in reply to agingfeminist]

They re trying that in Canada.Not good.

[RuthBelkin000]

Have you tried taking any natural supplements to boost your immune system?

[PMRpro Ambassador in reply to RuthBelkin000]

There are no "natural supplements" that boost the immune system that are advisable when you already have a deranged immune system that is overacting ...

[agingfeminist in reply to RuthBelkin000]

We take pred to zap our overenthusiastic immune system. Things like echinacea etc (if they do anything) are contraindicated when you are on pred. But a healthy diet is always a good idea.

[Sho-Sho]

Like you started on 60mg of pred for GCA, was horrified after about 3 months when the muscles in my legs seemed to disappear, really scary - nobody had told me this was one of the many side effects of pred. Having been really fit, played tennis, golf, walking my dogs etc found I could hardly do anything. Gentle exercising is the key, not exhausting oneself, trying to have a walk every day. Now on 5mg, my muscles have improved, important to eat a lot of protein which helps your muscles to strengthen - long journey!

[Anonnomus in reply to Sho-Sho]

Only a month since diagnosed. I am undergoing pt on hands and shoulders. I have started going back to the gym to help keep my cardio up and doing light weights, high reps. Also, trying to keep protein intake up. I think it’s important to stay active and keep moving. Key is to listen to your body and not overdo it. First time back I pushed myself and was exhausted the rest of that day and into the next. Yes, muscle mass is down, but it’s coming up a little. Start slow, stay with it! Soreness is to be expected.

[agingfeminist]

Thank you for your encouraging message. Ultimately, I think we all have very individual limits...but you are right we have to find them and try to optimize what we can do.

[pomeranion]

I am still suffering with undiagnosed GCA. Scheduled for MR tomorrow. I have been on 60mgs. prednisolone for almost 2 months now. Having just started experiencing proximalmuscle weakness/increased difficulty in movement the last 3 days I did some exploring. I found information on "Steroid Induced Myopathy" which describes these new symptoms to the tee. You can download much of it. I hope this can help. There seems to be other people here suffering with the same or similar conditions. I've found there are no new or easy answers when it comes to these autoimmune diseases. All we can do is to keep learning and sometimes accept the consequences together. Thank God for this forum and one another.

[Grammy80]

Amen!!! Thanks to all. I really identified with the muscle wasting but (as usual) learned so much from all the answers. It diminishes my issues just knowing there are so many folks in the boat with me....with a lot more info!! Love this forum💕💕

[agingfeminist]

My feelings exactly. I have found Snazzy's second video especially helpful and I have started doing some of the exercises.,,without pain or deterioration. But it is so amazingly helpful not to feel alone as we battle on.