Anybody have chronic breathing issues/resp muscle weakness?

[DaveT81]

Hi all,

So as the question states basically, does anybody have awful breathing issues that seem to be caused by severely weakened respiratory/peripherally used muscles that help breathing?

It's a horrible symptom that I believe is causing most of the problems I'm having but has led to CF. I don't believe it's a symptom of it. I had a virus a couple of years ago that last a few days and I haven't recovered since.

Some days, feels like my muscles have given up in my abdomen/chest, and I've yet to receive a diag that actually helps. Due to lockdown I've had no follow up calls with CFS team either, and the respiratory physio I was scheduled for hasn't occurred too. So I've taken to using YouTube vids in the hopes that I can help build the muscles back up myself, even a bit.

Any similar or exact experiences like mine out there? Really at a loose end rn.

[Troilus]

Hi Dave,

I had a severe relapse way back in 2009. I used to get very out of breath very easily. I used to think it was because I wasn’t getting the expansion I should on my rib cage.

As time went on, I gradually got that I could do more, still had breathlessness, but not as quickly as previously. As time went on I got back to near normal, able to do most things, with no breathlessness. ( Not that I was running marathons, just day to day stuff.)

Then, a year ago, I had a massive asthma attack. I am now wondering if the breathlessness I experienced during my problems with cfs/me might have been Asthma.

It might be worth asking.

I think part of the problem is, that when we have cfs/me, with its many and varied symptoms, we tend to think everything that goes wrong is down to cfs/me.

[DaveT81 in reply to Troilus]

Yeah, I often feel the same thing, re: rib cage. I had wondered whether this was due to intercostal muscle weakness. Maybe neurological somehow.

I've been tested for asthma and other lung related diseases but all of those were clear. So I'm left looking inter muscular problems!

[Troilus in reply to DaveT81]

That’s a good thing. You will probably find exercises on the internet somewhere. I looked at one just recently. If I find it I’ll let you know.

There is a lot on abdominal breathing and pursed lipped breathing.

[ALKT]

this symptom is of described as air hunger within the fibromyalgia community perhaps you are one of the many people who are unfortunate to have both illnesses if your not getting significant rib pain then it is unlikely due to costochondritis also very common in both m e and f m . if you are interested in learning some more specifically about m e and the present state of the scientific research etc you could google science for m e it is a very active site most of the time with very welcoming and knowledgeable people .

[DaveT81 in reply to ALKT]

I will do, thanks for your response ALKT!

Always happy to look into research.

[mylady77]

Hello Dave,

Yes, I have the same problem.

I'm officially diagnosed with ME/CFS but have Fibromyalgia on my records, although I've never seen a rheumatologist about it.

I keep going back to the GP about the breathlessness but she just says it's the ME and there's nothing they can do. It's very distressing and makes life even more difficult.

Thankfully it seems to last a few days and then pass. I've never thought about trying Youtube for advice, so thanks for that, I'll have a look today.

Best wishes x