LUNG INVOLEMENT IN CFS/FIBRO

[JChris]

Hi, My name is Nancy and I am new here. Have had fibro/cfs for 30 yrs

Things have changed … Now I am having swallowing disorder. Had

barium swallow/ manometry...all tests show that my esophagus has

little motility. So I cough to the point of going to ER, and prednisone

and IV solumedrol help to stop this.

This is being treated as "re-active airways", but from what?

Has ANYONE had this happen in their fibro experience.

I really feel it's all connected. I hate to have no clear answer

and end up in ER so often.

Thx for reading.... I wish you all well. Nancy

[scoobydoo87]

Hi , Just read your post , I’m having similar problems. Trouble swallowing certain foods , bread is the worse. Feel like everything’s getting stuck . I had problems a few years ago with reflux. Had a camera down and it also came back with reduced motility and oesphagitis .

Been ok till recently, Gp prescribed tablets to reduce stomach acid . Not made any difference. Going back to Gp on Tuesday for blood test results I had done . I’ll see what she says this time.

Never thought about it being connected to my Fibro/CFS .

Nothing surprises me with this illness , it’s affected everything else. So I can’t even comfort eat without it being a problem.

Take care.

[desquinn Partner Volunteer FMAUK Trustee in reply to scoobydoo87]

to be honest we have not seen much commonality with these sort of symptoms except when it is sjogrens and its issues with swallowing.

[JChris in reply to scoobydoo87]

hi thanks for sharing your struggle with swallowing.

Hope that you find some answers at you appt.

take care,Nancy

[25rosclare]

I have also had Fibro for a long time. I was on Diclofenac for almost 7 years when I became ill - it had been discovered that Diclofenac should only be used for a short term. They never told me that this was the case but I was taken off it immediately and was told I had a virus which would soon 'clear up'.

I was given Lansoprazole and for 12 years I complained to doctors as I had violent stomach episodes. A few months back I was told by a doctor that they had done all they could for me and I needed to accept that (I was having bad nerve pains). I cried for a day and then the next day I went and found a new doctor, who knew what I was talking about. I showed him the endoscopy showing that I now had a clockwise oesophagus. After reading the report he got annoyed and said that my oesophagus was eroding away and very soon I would not be able to use it unless something was done to control my stomach acid (I had developed a hiatus hernia about 7 years ago). He changed my tablets and for the first time in years I am able to eat with out feeling, sometimes. that I am choking. I can eat small amounts of foods that I haven't eaten for years e.g fruit and have had no violent stomach upsets.

I don't know if that helps but it could be down to your medication not being right

[nadine111 in reply to 25rosclare]

i've had the same problems for years. had surgery for hiatal hernia with achelasia. the swallowing issue is still a problem. plus i've had problems with stomach acid ever since the surgery. would you mind sharing what tablets are you taking that are helping. many thanks

[25rosclare in reply to nadine111]

I am now taking Omeprazole 20mg twice a day. Initially I suffered from bad flatulence but this calmed down after a few embarrassing weeks.

My new doctor gained an honours degree in Pharmacology before training as a doctor so knows what he is talking about. At my previous medical centre a doctor called me in to discuss the results of the endoscopy and said he would send me to a dietician - I told him that I knew what to eat but I couldn't eat it. in desperation, because he did not have a clue what to do, he sent me for a full set of bloods.

If your doctor does not understand or is not helping, please have the courage to find a new doctor. I wish I had done years ago. Good luck

[JChris in reply to 25rosclare]

Hi,

Thanks for your input. I'll mention my meds.. although they have been

gone over with all these visits. I take omeprazole.

Heartburn has never been a problem for me.

Some thoughts are ? nerve/muscle disrupted signals from brain.

Will see again Thanks and I hope you continue to improve . Nancy

[Sarahvit]

Hi Nancy, when I saw your title of your post “lung involvement in CFS/Fibro” it perked up an interest in that I have lung involvement with my fibro/CFS but I don’t know 🤷🏼‍♀️ what is causing the lung involvement either. Even though there are opposing views I believe it is an autoimmune disease because of the other diagnosis and disease that tag along with it. I’m sorry but I am really sleepy and having a hard time thinking 🤔 goodnight.:

[JChris in reply to Sarahvit]

Hi Sarahvit,

Thanks for your response. I am wondering if you have coughing that

is treated w/steroids? ie: swallow/cough/o2gets low/steroids given

Hope that makes sense.

I hope today is a good one for you.

Thanks, Nancy

[Sarahvit in reply to JChris]

The last two times I was on steroids was for respiratory issues: asthma, pneumonia, bad sinus infections, etc. My O2 drops during my REM sleep but it does drop, not as low as in my REM sleep but still low enough to warrant a breathing treatment.

Well slept late today to 11:30. I don’t like this sleeping that late. I hope you have a good day.