IBM and respiratory problems

Dear all:

I am new to this - yes I am an old guy trying to do what younger people do naturally -- so please let me know if I am doing it wrong.

I am 75 and have been diagnosed 7 years ago with IBM; but probably have it longer. Use an electric wheelchair and a walker at home. About 2 weeks ago I started having shortness of breath and some important pain (6/10) in my diafragm

when getting up from the sitting position. Any experience out there that can someone share with the same or similar situation?

Any comments on IBM and respiratory conditions will be appreciated.

Thanks to all.


Hi Herb,

I have DM and when it was at it's worst I had respiratory problems, but once I was on the right dose of medications, it did get better.

What has the doctor said?

(And for the record, some of the younger folks have a hard time with this too. You did great!!)

Hi Herb.

I haven't experienced this personally, but many others have. When it comes to questions about new symptoms, I like to go to Bill Tillier first. He has some good commentary and suggestions at - I'll list his main points below, but it's worth reading the rest. You'll notice it's most precautionary stuff, since respiration issues are still kind of rare, or at least under-reported.


  • Research indicates that weakness of the diaphragm or other respiratory problems may be more common in IBM cases than once appreciated.
  • Recent research found a high frequency of obstructive sleep apnea (OSA) in patients with inflammatory myopathies. Weakness of the oropharyngeal muscles could explain this finding. The possibility that these alterations play a role in the persistence of fatigue in patients with inflammatory myopathies cannot be ruled out (Selva-O'Callaghan, et al, 2009).
  • Recent research found a higher than expected proportion of diaphragm abnormalities in patients with inflammatory myopathies even though they did not display gross lung involvement or have obvious respiratory complaints.
  • Although only a few cases have been documented in the literature, I have recently been contacted by several people diagnosed with IBM who are currently using Bipap machines to address respiratory insufficiency.
  • It seems prudent for IBM patients to have respiratory testing to establish a baseline of function and to disclose any current issues.
  • Early management of respiratory issues is important, by the time symptoms become noticeable, major impairment may have already occurred.
  • The routine use of manual lung volume recruitment (see 3a) would appear to have many benefits for the average IBM case and especially for those people in wheelchairs whose respiration may also be affected by postural issues.
  • Respiratory infections and pneumonia appear to be a major concern for IBM patients, regular use of lung volume recruitment is a prophylactic and may reduce the impact and severity of respiratory infections.
  • IBM patients should consider vaccination for pneumonia (see 4 below).
  • In cases where there is diaphragmatic weakness, the use of a mechanical breathing supplementation may be necessary (see 3b).

Also, the Myositis Association (TMA) has posted a Q and A on myositis and respiration. Parts of it address IBM, and I found it interesting that Dr. Danoff says:

Dr. Danoff: The symptoms of lung involvement in IBM generally reflect the decreased strength of the muscles of breathing and may include change in voice (getting quieter), change in cough (getting weaker) or a decrease in exercise level due to shortness of breath. The lung function can be checked by your doctor by doing pulmonary function testing to determine the forced vital capacity (FVC).

It's interesting because so many of us with IBM report difficulty coughing and expectorating. I hadn't thought of the connection before. Thanks for posting!


I would say go to your Dr, just to be sure it is not something serious. I have a weak diaphragm IBM affects it. It feels like someone is squeezing me, had pulmonary function tests done, I am getting enough oxygen but cannot expel it. Cannot lay flat on a bed feels horrible. I wear a BIPap machine at night ,it pushers air in my lungs and expels the Co2, Many people who have myositis have been found to have sleep apnea as well, I would ck with your DR. About the PFT testing and sleep study. Take care

Hi i was having similar probs - constipation, diarreah, then severe pain at the base of my sternum for about three months. I had a colonscopy and endoscopy - showed nothing important. I was prescribed all sort of stomach meds (omeprizole, etc) - no help... abdomen felt constantly contracting/spasming, leading to shortness of breath. I told my GP it's not really my stomach - IT'S PAIN!!!! She gave me vicodin, and that was the only thing that stopped the pain... i was having trouble standing up, like my body insisted upon bending forward... really weird... it did feel almost diaphragmatic too, to me.. like uncontrollable spasm. So yes i can relate, but have trouble figuring out the exact cause of it all. hope you feel better, i know it sux. Be well.

Hello Herb, My thoughts go to you for a speedy recovery. You must be very uncomfortable. Have you had any improvement yet? Please know there is no age barrier on any of Ben's Friends support sites. I am an old girl (53) who currently feels even older Lol. (Lol = Laugh out loud). Any of the younger generation slang you don't know the meaning of I am happy to educate you. I have a 25 yr son and a 22 yr daughter so I hear it pretty frequently. I was only telling an American friend of mine the other day that the slang from my generation is being lost to new slang. I am Australian and our slang was not crude or insulting but I guess people that lived in higher society did not approve of the use of slang in conversation. Therefore using slang was an indication that you came from an average Australian class. My father made my brother and I practice speaking as one does from English High Society. Ha ha. We got teased for being a 'pommy'. Back to your subject, sorry.......

I have not experienced your problem however I was going to suggest to keep a diary of your symptoms, your pain level and your diet to see if there is any pattern. You don't need to go out and buy a diary. An old lined exercise book will do. Just write the date at the top of your comment and the time of day your pain is bad or even improved.

At the moment I am participating in a long term study into Opiate pain relief. Sometimes I forget, but most of the time I just pencil in my pain score and the time/date. If you have anyone that could type up a document on a computer that would make it a bit easier. I could do that for you and email it to you if you have a printer.

You certainly don't have to be age challenged to have any memory loss. Not saying you do, just when I go to the Doctor if I don't have all my symptoms written down I often forget to mention things. Brain Fog Ha ha

Good luck and please let us know how you get on.