Legs giving way

[irenec]

When I am out and get out of breath my legs almost give way. Dose this happen to any one else?

[Billiejean_2]

Hi Irene ! I've had problems with weakness in my legs during exacerbations, on and off since 2012. For example, in 2012, when it started I could never stand long enough to brush my teeth and would have to sit down half-way through. I mentioned it to the doctors I was seeing at the time but they had no interest and just brushed it off. This only happened when I had bad exacerbations and in between, I was fine. But in October 2014, it became a huge problem. I saw a neurologist, had some tests done and was finally told it was told it was steroid myopathy and not to take steroids anymore. It eventually went away and I've only had steroids once since then. But when very unwell I still have weakness in my legs and especially at night when I'm tired. It could also be related to lack of oxygen affecting the blood supply to the legs. Do you know if your 02 levels are OK ? Mine certainly drop a bit when I'm exacerbating but I'm aware of this and take it easy during those times.

It's very scary to feel your legs aren't going to hold you up and I can imagine how distressed you are. If it continues, try and make your doctor aware of your symptoms. They are famously indifferent to anything they suspect you're imagining, so you may have to insist they pay attention. I hope you get some answers soon

[knitter]

Hi Irenec , I know that ' jelly legs' feeling well.

I agree with billiejean about the muscle weakness caused by steroids...it has happened to both me and my friend who takes prednisolone regularly.

I guess low oxygen levels are a factor too, and anxiety seems to make it worse.

Only once did my legs actually give way and that was at the door of A and E when I could barely breathe....my neighbour was with me and he had to carry me in. He has never let me forget it though!

I am trying to build strength in my legs using my mini bike exerciser but I do get lazy.

Take care

[Billiejean_2 in reply to knitter]

I use my exercise bike too Knitter and when possible some of the exercise machines in our local park. I'm doing an online course at the moment on 'strategies for successful ageing' and they have some good exercise recommendations. One simple one for working your leg muscles is to stand with your arms resting on a chair back or counter then raise up on your toes until you feel a good tug on your calf muscle. Repeat as often as you feel up to. I find it's one I can do without major exertion or sob.

[knitter in reply to Billiejean_2]

Hi billiejean , thanks for that exercise tip.......I know you don't take oral steroids now, but if anyone is and exercising their legs ...just be careful as the Achilles' tendons can be vulnerable..

The BLF have a very good exercise DVD too, graded for people with different abilities.

Thank you again and take care.

[Billiejean_2 in reply to knitter]

Can you buy the BLF tape or do you download it ?

[SteveS in reply to knitter]

Being on symbicort and spiriva both daily, plus an emergency Ventolin inhaler I'm taking a lot of steroids. I hadn't really thought of it as a reason for the jelly legs syndrome, but it makes sense. My 02 levels stay around 95-97 other than during exacerbations so it isn't that. Thanks for posting this. Not knowing "why" we feel certain ways is almost scarier than the condition itself!

[Hidden]

Hi. Just a small comment on jelly legs. I think it's a combination of both steroids and oxygen levels in the body. It is'nt a pleasant feeling I know but I do think that exercising to strengthen legs and body is a really good thing. I am 77 and have had COPD for 9 years and my oxygen level is never above 94 and less when I have an infection. I use an exercise bike and do other normal exercising every day when I am well enough. I don't know if anyone else experiences dizziness when they have a good cough! That is a scary one as you feel like you are having a stroke. Again I have been told it's an oxygen problem not getting to the brain. It's no fun is it but we have good days and bad ones and try to enjoy the good ones.

[jackdup in reply to Hidden]

I was told that often the dizziness arises because when you are coughing, exercising or otherwise out of breath you start to tighten your neck and shoulder muscles which reduces blood flow to the brain and causes the dizziness. I was told to relax those muscles and they were right, it made a big difference. I started paying more attention and found that was usually the case so have been trying to train myself to not tense up my shoulders and neck but to relax them and breath from your diaphragm. So I think it is a reduction in O2 but not necessarily because of the COPD but more so because we are restricting blood flow.

Of course I am sure there are times and people with severe disease where it may well be the lungs not able to provide adequate O2 that is causing the dizziness or other problems.

[Hidden in reply to jackdup]

Thanks for your comments jackdup and you may well be right but it is only since I have had COPD that it has happened. I have never had it before and I am sure that I have had bad coughs at times over the years. It could well be not being able to relax the muscles that is the problem but to be honest when you are trying to cough up the stubborn mucus, it is a bit hard to try and relax!! Nevertheless, I shall try to think aboùt relaxing my shoulders and throat. We all will try anything to make our lives a bit easier and it's good to have ideas from other people. Thanks again.

[jackdup in reply to Hidden]

I completely understand what you are saying however before you had COPD your lungs worked differently even when you had a bad cough and I don't think your shoulders and neck muscles played as big of a part in breathing as they now do.

When you go to the doctor and are asked to take deep breaths in and out I sometimes get lightheaded so perhaps at least some of what you experience is for the same reason or a combination of reason.

[Hidden in reply to jackdup]

Yes jackdup I see what you mean though I don't have a problem when I exercise or do breathing exercises. Just get out of breath. It's the coughing that gets me! Strange disease this COPD! You never stop learning new things about it no matter how long you live with it.

[INK45]

I had been asking nurses and doctors why my legs were weak and I had this propensity to fall all of a sudden, with no apparent reason, but wasn't getting any answer, had to find out for myself by googling away !!! An explanation is provided here medscape.com/viewarticle/84... and in other recent studies: it turns out that in people with COPD leg muscles are infiltrated with fat .. "Our findings demonstrate that, in addition to muscle atrophy, there is a lipid accumulation in lower limb muscles of people with COPD that is significantly greater than what is observed in their healthy counterparts. Moreover, increased intramuscular fat infiltration has a stronger correlation with muscle weakness and impaired mobility than muscle size in this group." However, the article goes on to say that they do not know why this happens and it is "a future area for research."

[Offcut]

When I was in PR in 2008 I kept having a pain/cramp in my calfs once I did to much exercise work. I was told that as I was not having enough oxygen to feed my heart it draws from the legs as it is the next biggest pump we have? Sort of makes sense?

Be well

[undine]

I was told that it takes a lot of muscles to stand up so that when we are short of oxygen the heart pumps it to our internal organs as priority and that therefore there is little left to service the muscles in the legs - makes sense to me - take care xxx

[Hidden in reply to undine]

Sounds like a good reason for having weakness in the legs and makes sense. It's interesting to have all these reasons for our weaknesses and it does help to have others input. You take care undine xx

[Billiejean_2]

These answers are so full of helpful information and obviously weakness in the legs is not uncommon where people have lung diseases. It makes me angry now when I think of how many doctors I've spoken to who just brush this problem aside and leave you feeling like a hypochondriac. Would it kill them to briefly consider the points we've raised here that we had to research and find out for ourselves ? Obviously they must know these factors that influence weak legs or is it that they don't want to go into the whole side-effects of steroids debate ? I know many of them are wonderful, that we all need them etc., etc., but sometimes doctors can be a right pain.

[Sherry44]

Hi Irenec. No my legs don't give but they do sometimes feel very weak when lungs not acting as they should. Hope you can get help for this. sorry I can't really suggest anything.