BRONCHIECTASIS and acheing legs

[RoadRunner44]

I am a sufferer of BRONCHIECTASIS for over 15 years. Can anyone tell me if I the dreadful constant ache in my legs and buttocks could be related to this lung disease please.

Roadrunner

[Hidden]

I get the exact same

[RoadRunner44 in reply to Hidden]

I am a 75 year old female and find the acheing and heaviness limits the distance I can walk. Do you find this too? Thanks for replying to my question.

[Fleurbaby in reply to RoadRunner44]

I am 57, I have very weak legs, I have progressively got worse over the last 12 months, I need to use a walking frame to get around, it is embarrassing, as I shouldn't have to use a walking frame at my age!

I can get very restless legs, especially in bed!

If I constantly get up and walk around, I am in quite serious pain, no one cares, or offers any advice on what to do with it! So, l generally only bellyache on here. But, again in answer to your questions? Yes, a lot of us on here do suffer the same.

[RoadRunner44 in reply to Fleurbaby]

Thanks for your reply. However, I was particularly interested in your comment about having restless legs. I had this really distressing problem and my doctor organised some blood tests as I also have kidney disease. When the results came back they showed I had anaemia. I have been on iron tablets for two months and the dreadful restless legs have gone. I would suggest that you ask your doctor for a blood test as it might just be you are also anaemic. Please let me know how you get on.

[Shazrab]

Hi I just wanted to say I also get this I thought maybe it’s to do with my arthritis as iv also read on their forum that a lot of people there suffering from it . Who knows what causes it ? Anyway so I bought support stockings from e bay £6 for 2 pairs they’re really good for the deep aching I get in the muscles in my calf’s, I wear them for a few hours at a time one thing is it tells you not to wear them during the night so I take painkillers before taking them off also find heat helps I actually bought an electric blanket this helps my arthritis also the pain I get in my sides and back due to copd. I know some things help one person but not another but you just never know. Good luck and take care 🌹🌹

[RoadRunner44 in reply to Shazrab]

Some good helpful suggestions. Will try some while investigations continue. Thank you.

[Alice70]

Yes I get aching heavy legs especially in the mornings,I am inclined to blame medication for everything

[RoadRunner44 in reply to Alice70]

Have you asked your doctor what could be wrong?

[Alice70 in reply to RoadRunner44]

No I haven't RR ,I see my consultant in a couple of weeks going to mention it to her

[RoadRunner44 in reply to RoadRunner44]

Having tests at the moment.

[RoadRunner44 in reply to RoadRunner44]

I am in the process of having some tests. Seeing a physio too so hopefully will get some answers. I loved walking with my local walking group and missing it so much so I'm crossing my fingers this is a temporary thing.

[chubby2x22]

Hi rr44, yes I have the legs like jelly when walking, and aching when sitting. Its the anemia my gp says been on iron for 4 months, slightly better but not great, keep taking the pills.jane

[RoadRunner44 in reply to chubby2x22]

Oh, your reply has made me hopeful as I am being treated for anaemia. Do you know what causes anaemia in the first place?

[chubby2x22 in reply to RoadRunner44]

I asked why I was suddenly anaemic, could be meds could be bleeding from somewhere, could be a leak from taking warfarin, as I'm 76 next month decided to wait and see . Not very brave really lol Jane 🍹

[RoadRunner44 in reply to chubby2x22]

I hope you are taking iron tablets for the moment as anaemia won't improve as its a shortage of iron. Although you are 76 you want to make the most of your life and remain independent. Ask for further information rather than just taking iron tablets.

[RoadRunner44 in reply to chubby2x22]

Will do.

[santisuk]

I'm not aware, from my four years of living with bronchiectasis and reading lots on the internet, forums like this and the BTS Guidelines on bronchX for doctors, that would suggest that aching legs are a recognised symptom of our condition. That said, a number of people report above that they have aches (but it's not clear they all have bronchX!)

I do get aches around my buttocks and hip joints but that's a result of mild osteoarthritis and a hangover from a herniated disc repair 9 months ago. As others have said some drugs have muscle aches as a side effect - particularly those related to heart/blood control. I've not noted it in any of the drug leaflets I have used for bronchX though - antibis, mucolytics, inhalers, bronchodilators, but that's just my experience.

Muscle aches are quite common the older we get I think. It's one to discuss with your GP. Be prepared to answer detailed questions about when the aches come on and under what circumstances (if any) do they fade away. Whether they get better or worse with excercise or with resting, whether raising them up on a pillow at night helps, what drugs you are taking etc etc. Good luck in pursuing your investigations.

[RoadRunner44 in reply to santisuk]

Thank you for taking the time to go into such detail Santisuk

[jennycherrie]

I am 60 years old and have bronchiectasis and a mild form of cystic fibrosis. Like you, I have problems with aching legs. This happens mainly in the evening/night and constantly wakes me up. I would say it is uncomfortable rather than painful. It doesn't seem to make any difference if I've been exercising or not. My consultant doesn't think that it has anything to do with my condition. I have noticed that I also get a hot flush just after it starts so wondered if it was hormonal. Sorry I couldn't be more help but I do sympathise as a fellow sufferer.

[RoadRunner44 in reply to jennycherrie]

Thank you Jenny.

[Tetrazzini]

I would think age related rather than lung related.

[RoadRunner44 in reply to Tetrazzini]

Hope I get answers soon whatever the problem.

[Shazrab in reply to Tetrazzini]

Hi tetrazzini I have to disagree on the age related thing as Iv suffered this about three years and iv just turned 49 so I think it started when I was 45 ish . Sometimes it’s worse than others but I still can’t work out what’s causing it. I hope you’re well and having a breath easy day ( if there’s such a thing) take care 🌹🌹

[RoadRunner44 in reply to Shazrab]

Hello, Yes I would agree with you. At your age I was playing county badminton four nights a week. I find it very frustrating trying to work out what is causing the pain. I don't know about you but I am becoming restricted where I go, having to ensure I can carry out daily tasks. I find cocodamol helps but like you I want answers so that I can help myself.

[gingermusic]

I find I now have trouble with pain in my left leg and cramp in my feet and toes not sure is related to the Bronchiectasis or not

[Hacienda in reply to gingermusic]

Hi Hun, I recently started with a shooting pain in my Big Toe, it came and went, Like a Cramp, I thought as my Knees are weaker it could be this,(I'm Using Ibuprofen Gel). I do think all our Meds give us Side affects that we don't really understand, Doctors don't really understand either, we are the experimental patients. I do exercise, even my Big Toe gets exercise as long as I don't put pressure on it. xxxx

[RoadRunner44 in reply to Hacienda]

Yes I agree.

[Redrum46 in reply to Hacienda]

My legs kill me no strength in them if I don’t move it’s ok but wen I get up try to move it’s pain and unstable I use bell and Holland a barrett devils claw trying to stay away from painkillers as iv had a bad reaction to my breathing with any with morfene in .

[RoadRunner44 in reply to gingermusic]

Difficult to say isn't it?

[RoadRunner44 in reply to gingermusic]

Yes, difficult to say.

[watergazer]

It could be as any inflammation in our bodies affects our joints etc. I get aching knees and legs; sometimes my wrists are bad. I bought magnesium glycinate to see if it helps me . I suffer from ulcerative colitis too which is also an inflammatory disease. Anita x

[RoadRunner44 in reply to watergazer]

YES, I TEND TO AGREE WITH YOU.

[2greys]

If you are an ex-smoker. There is the possibility that you may have Peripheral Cardiovascular Disease, can also be called Peripheral Arterial Disease or Intermittent Claudication . Which restricts the blood flow to the legs and sometimes arms/hands.

The pain/cramp is caused by the waste product from your muscles burning up glucose/oxygen for energy and it not getting flushed away to the liver via the blood, where it gets removed.

I have this condition and the pain can be crippling. It can be treated with stents but there are risks attached to this. It is diagnosed by a Cardio Consultant who will use blood pressure cuffs attached to the ankles.

[RoadRunner44 in reply to 2greys]

I am going to look this up to see if mysymptoms correspond. Thank you.

[RoadRunner44]

Thank you for a very explicit answer and no I have never smoked. However you mention checking blood pressure of ankles. I have had this done but nurse wouldn't give me any answers. If the blood pressure result is the same in the arms and legs when taken is this good?

[2greys in reply to RoadRunner44]

Theoretically the blood pressure whilst laying down should be the same, standing it will be just a tiny bit different with a slightly higher pressure in the legs.

[RoadRunner44 in reply to 2greys]

Thanks for that useful piece of information

[Didgeydo]

Hi,

I have also suffered with pain in my legs and wondered if it was related to my lungs.I now rub Vick vapour rub all over my legs and I know there is no cure for pain but I find it eases it,as I am allergic to all painkillers.I hope it helps you.x

[Shellc]

Have u tried magnesium supplements for the aching legs or magnesium spray is very good too

[RoadRunner44 in reply to Shellc]

That sounds interesting, will give it a try. Thanks

[wheezybronch]

I am a bronchiectasis sufferer. I recently was diagnosed with osteonecrosis in my right hip. I was not associating hip,groin, buttock and thigh pain with the bronch. but there is a tenuous connection. see the link below and note that steroid use and drinking alcohol are two reasons, amongst many others, singularly or in combination for getting the disease. I am currently Adrenally Insufficient due to prolonged use of Prednisolone in high doses (could not breathe) and stopping them too quickly . I also like alcohol. Also I have been battered by sports injuries etc.. The pain is a deep seated pain that you cannot rub. No painkillers would help including high doses of morphine. I was woken up many times, still am, by the pain, eventually I found simply getting out of bed and shifting the weight from one leg to another eased the pain, enough for me to get back to sleep. Sorry for your troubles I hope you get some relief soon.

rarediseases.org/rare-disea...

[RoadRunner44 in reply to wheezybronch]

I am so sorry but surely your doctor could refer you to a pain clinic. You shouldn't have to just put up with this condition.

[wheezybronch in reply to RoadRunner44]

I have been to many pain clinic sessions but no help. THey keep trying to sell me cognitive behavior therapy, personally I found this useless. I have osteoarthritis and some doctors think I have fibromyalgia. I was told that I needed to exercise and do a physio regime, this is their answer and, in general, agree with it. However, the really empathetic physio said that however bad the pain there was no chance of having a hip replacement for at least two years.......thanks mate ! Anyway, i had not even wanted a hip replacement as the pain was so diffuse I believed that it was not the answer. Then I was diagnosed with right hip osteonecrosis which matched all the symptoms and sites of pain. The treatment is NOT to exercise or weight bear as the bone tends to splinter and eventually collapse, the exact opposite to what I was advised to do. I told them that one days exercise left me in agony for at least three and pretty much unable to move. Anyway, I am managing and really do not trust doctors in the least now.

[Jaybird19]

I get that i thought it due to problem back , but could be due to low oxygen levels. Hadn't associated it with bronchiectasis. Certainly get tired very easily, doing nothing !