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Fybro And Lung Problems
A MyFibroTeam Member asked a question 💭

I have recently been diagnosed with Fybro but i also have major undiagnosed lung problems and have visited A&E on numerous occasions sometimes being admitted sometimes sent home. Breathing can be very hard especially exhaling does anyone else have these problems and how do you cope ? . Many Thanks

posted January 11, 2019
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A MyFibroTeam Member

Anytime we feel a change that could be serious please consult your doctor and don't assume it is Fibro. If you are always being blown off like a hypochondriac or they don't have an answer then move on to another doctor who cares and will listen and take you seriously. I was diagnosed in the mid nineties. Was blown off many times by many doctors about being short of breath, my face sweating, chest pain, racing pulse, legs falling asleep while walking causing falls and broken bones, dizziness, trouble thinking.... The list goes on and on. I didn't go to the doctor with all these symptoms at the same time but I have dealt with them and lost more jobs than I can count from passing out. I knew it wasn't JUST fibro and I kept on pushing. Last year my symptoms were so bad I had a telling match with my GP. He said fine and sent me to Cleveland Clinic. It took them three visits and lot and behold I really have serious health problems. In addition to FM I have two rare and fatal conditions. Diastolic Heart Failure and Pulmonary Hypertension... And I'm still fighting for my SSD. Hopefully, the additional diagnoses will speed things up but I'm sad to say I'm still not expecting them to grant it. It very much matters whose hand your file falls in if they care at all. I've had these problems for over 20 years. I can no longer hold my grandbabies. I was a good worker and loved my job but haven't been able to do it in years. Relying on friends. Not having a home of my own. Relying on my parents and sister for money. It meant nothing to SSD doctors because they didn't have anything to CALL it. Now they do... Still waiting. Don't let it dishearten you, there are plenty of people out there who applied with Fibro and had it within 3-6 months. Good luck to everyone and God bless.

posted January 11, 2019
A MyFibroTeam Member

i also have asthma (since before the fibro) and i just use my inhaler when needed. i find a lot of times, i get where it feels i cant take a full breath in, like i just cant take a whole deep breath. but this happens a lot, so i think now sometimes i dont really even notice. i used to get freaked out and worked up over it (because well i think issues with your breathing is one of the scariest things) but its been happening to me for like 4 years now, so i just try not to focus on it when it happens and it goes away after a bit.

but i dont know specifically what your lung problems are, and theyre probably worse than mine. but if its asthma related, you could try getting a home nebulizer. basically, you get the same medicine you get from in inhaler, but it just seems to work a lot better than a regular inhaler. my cousin has worse asthma than me and has one, and i have used it a few times when i was sick which made my asthma really bad. doing this might help you with your breathing.

but if its some other problem, i suggest seeing if you can get in to see a specialist, that will do tests and everything, to find out whats wrong.

posted January 13, 2019
A MyFibroTeam Member

I have asthma. I get out of breath easily. Use an inhaler as needed. Take care!

posted January 11, 2019
A MyFibroTeam Member

I have pulmonary sarcoidosis and therefore not sure if breathlessness is due to that, a dodgy mitral valve or fibromyalgia. I tend to blame fibromyalgia for everything. It could be other things but how am I expected to know.

posted January 16, 2019
A MyFibroTeam Member

I sometimes, even now, have moments through the day where it feels like my lungs hurt when I breathe out. And I had an xray a week ago on my lungs, so it's not pneumonia or anything. The vagus nerve runs behind all that. I assume that because I seem to be in a flare, and fibro has to do with nerve endings, my vagus nerve is involved at the moment.

posted January 15, 2019

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