breathing problems with fribo. - Fibromyalgia Acti...

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breathing problems with fribo.

BARTLETT1965 profile image
10 Replies

Hi. Has anyone else been told their shortness of breath and low oxygen is down to fribro

If so what treatment was u offered, I was told but not been given any further help in treatment or what I can do to improve my breathing.

thank you

Jeff

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BARTLETT1965 profile image
BARTLETT1965
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10 Replies
Buboo profile image
Buboo

HiI've not been told that shortness of breath is fibro.

I have fibro and had a similar issue about 18 months ago. I was sure I had asthma due to allergies. I had to have a rather challenging conversation with my doc and basically told her that I thought it was asthma and wanted to be tested fir it. She gave me a peak flow meter and asked me to monitor my breath a few times a day for a few weeks. I did have shortness of breath., the doc prescribed an inhaler and then I had other tests over a period of time and ended up going to respiratory dept who said I had asthma.

It is to easy to blame everything on fibromyalgia..if u believe than it is something else, do some research and go back to your doctor and ask for help but be firm dont let them put you off. Doctors don't know you..you know you.

I'm glad I stood my ground. I got the diagnosis I was looking for..it took a while but I got there.

Good luck in your journey to get answers.

BARTLETT1965 profile image
BARTLETT1965 in reply to Buboo

Hi.

I was given test using the electronic version of peak flow and inhaler made no difference to my breathing. Had cardiology check heart because of stroke and heart attack I 2008 which caused 50% brain damage. Should be able to do anything with result of it.

So after testing from other departments chest clinic did mri to check for Asbestosis and the cause of the breathing problems.

This is were the consultant came up with my fribro.

But my Gp hasn’t said they’ve any letters from them about 6 month plus since I saw consultant.

Thank you for ur info.

Jeff

honeybug profile image
honeybug in reply to Buboo

well said my friend…I totally agree.

🤗🙏🕊🌿🌸🦋 EJ

honeybug profile image
honeybug

Breathing problems can occur at any time. Not always do to one prominent condition we have.

Just as Buboo said it can be due to asthma even very mild asthma can produce big problems especially when allergies are present.

Heart problems; faulty valve function; mitral valve disease (like mine ) can cause fluttering which whips the blood flow backwards and can cause blood clots to form which can cause breathing problems (the heart and lungs function together)

Being inactive for long times can lead to DVT or deep vein thrombosis/blood clots that travel to the lungs from legs and cause difficulty breathing.

Having a red blood cell issue/ anemia, or calcium/magnesium deficiency can prevent cells from getting oxygen due to low red blood cells count or an inability for the heart to pump blood around the body especially in heart failure.

You have to be your OWN advocate when it comes to your health. You have NHS and they are overwhelmed and doing the best they can for care As Buboo did so well saying they don’t know you just how to look to them the explanation /history you tell them and make a decision based on this limited data

It would benefit you greatly to keep very detailed notes on your symptoms example:

Date time, duration of symptoms , what activities doing when symptoms occurred, what you did to relieve symptoms (what did/didn’t work). How you currently feel and how long these problems have been going on.

Keep these notes and copies of all tests and doctors summaries in a home chart and take to all doctors visits/NHS visits.

I’ve been doing this for decades now. Eventually I have to keep several charts to take with me to my visits so I can find data for new doctors that will see proof of my medical history. I keep them all in a zippered tote bag for security reasons.

Oh I didn’t mention that lung damage from smoking/inhaling chemicals, foreign air born pollutants/particles can cause long term damage and emphysema/COPD/cancer etc. that all causes breathing problems.

Having a pulse-ox device at home for monitoring your oxygen levels would be helpful too. Keep notes on these readings too.

I just said a special prayer for you to get the proper diagnosis and treatment asap.

Please take care and press on until you get your answers and care you deserve.

Love and prayers my friend,

EJ 🤗🙏🕊🌿🌸🦋

PS sorry didn’t see your response due to failing eyesight and how long it takes me to do my reply plus correct the autocorrect word hijacking it caused. Also my end of sentence periods don’t work so they may be missing despite my edit attempts 😊

teltrab profile image
teltrab

hi my name is bartlett also i have fibro dont know if we related thanks

Lillylilac profile image
Lillylilac

Hi thereYou have had it rough haven't you?

I have not heard of Fibro causing breathing problems nor have I heard of anyone else.

I had shortness of breath and after having xray, peek flow test and blood test which all came back clear. I was referred to respiratory. I had a CT scan and a bronchoscopy. My consultant told me I had bronchiectasis and referred me for physio. I was given breathing exercises which I try and do every day.

I so hope you get some clear definitions of how to cope,treat yourself and things get better. Don't give up hope as it's been said only you knows you so keep going until you are satisfied.

Sending comfy hugs.

Lilly

Mrdiagnosis profile image
Mrdiagnosis

Have you been tested for Sleep Apnea ? I have Fybro and has similar issues but it turned out it was Obstructive sleep apnoea.

DavidCB profile image
DavidCB

A lot of my long covid symptoms /issues also link and relate with my fibro, but breathing issues only started for me after covid.

Judithdalston profile image
Judithdalston in reply to DavidCB

Snap….long Covid related breathing problems, undiagnosed as anything named…not seen on X-rays, nor sleep apnea etc, but causes problems when doing simple daily household tasks like brushing hair or cooking sauces! Gives me a ‘stitch’ type pain around back to front…weird. I don’t associate fibro itself with breathing problems but I have regular rib pain that might mean one breathes less deeply to limit the pain, I have regular gentle spinal manipulation by ex McTimoney trained chiropractor to limit this, plus everything from neck to hip, pain.

AC2022 profile image
AC2022

Yes. FMS symptoms can cause fatigue and dyspnoea, which may be related to changes in the respiratory system. Secondly, muscles locking up in the neck, spine, shoulders, limits movement and so prevents longer, deeper breaths.

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