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grahamom Message
10 Mar 2010, 11:12 PM

I am a very active person - bike riding, running, rollerblading, hiking, gardening, yoga.....and as I have no underlying pulmonary disease this is basically a mechanical problem. I find that I can participate in all of these activities still but am DEFINATELY impacted. ANYTHING I do which knocks out my accessory muscles makes me feel like I'm suffocating. Not a nice feeling. And sleeping is, of course, problematic. Initially I woke up with searing headaches, but they have subsided. I have also had the same experience with swimming/water - think my plans to scuba/skin dive anytime in the near future are out! Anyone on Rideshare recovered from this?
Archie Message
13 Mar 2010, 11:59 PM

Just checked top see what was happening. Pleasantly surprised to see new activity sorry that someone else has this. I also was diagonised with this Aug '08 - everything was going well other than sleep apnea-- next day I can't sleep lying down, going for a swim is out, major activities- working long days and home or other projects after-- curtailed. There are major adjustments in activities and what I can do and what I want to do. Considering the alternative at this point 'Life is Good'. I am more comfortable with the condition and have adapted my life to work within its constraints. I am not cured but now can sleep lying down without waking with headaches, burning eyes- a much more restful condition
grahamom Message
14 Mar 2010, 05:20 AM

So your diaphragm never came back? There is some hope that it will/may - At least the L side, or more likely the L - I received IVIG when diagnosed on that side - with the R didn't really know what was going on - thought it was due to this brace I was wearing post hamstring repaing and extremely rapid deconditioning (wrong on both counts!) The headaches I had but only at first - though my pulmonolgist did get me a bipap machine thinking I was underventilating so much I was retaining CO2. But I think my body is adjusting - I can sleep lying down, flat even! - and am finding I can go a bit further in Yoga, riding bikes.....I have no underlying pulm disease, so I feel incredibly fortunate that it is truly only (?) a mechanical issue.....Did both sides go at once for you? did they ever figure out "what" was the cause? Autoimmune? That's what they think mine is.....trigger by 1) surgery then 2) a virus. Guess my hope to be a deep sea skin diver are out! (just kidding....never wanted to be!)
Archie Message
28 Feb 2011, 09:41 PM

I had an exam last week and found out that I am about the same as I was last year as far as the different mechanical test are concerned. I am now used to the condition and have made life style changes. My love of water activities has been curtailed to a large extent even thought I still get wet but watch out depth and the area. When I was working thru disability rulings I thought an old injury that hit my diaphgram area back in 1997 was the primary cause. All the doctors said there was too much time between that accident and my problem. That accident had caused a trip to emergency and was documented with Workers Compensation. Sleep apnea developed after the accident. This developed after the sleep apnea. Oh, by the way I don't smoke and enjoyed an active life with sports,swimming, hiking, worked in construction,etc. I think the doctors could not explain the cause and therefore would not entertain any possibilities
Archie Message
24 Jun 2014, 10:47 PM

I had a physical Jan 2014 in which everything seemeed ‘normal’ except for the breathing problem. Blood work was ‘perfect’. Over the years I have learned to work with the physical limits I have. I often wonder if the people that die from heart attacks are really sometimes caught with this breathing problem but were unable to get air before passing out and dying. I mentioned this to doctors who tell me that I don’t know what I am talking about. The interesting thing is when I first came to the hospital years ago- all the medical energy was spent taking care of my heart since it was racing, blood pressure was up, headache, etc. Just a note --Chronic Inflammatory Demyelinating Polyneuropathy had also been mentioned at the start of the problem. Doing -OK