Breathing problems

[Lucinda]

I have heard that some people with CFS suffer hyperventilation, i.e. over breathing, but I'm not sure that is what my problem is.

I'm not actually sure what is wrong with my breathing. I know that I am often aware of my breathing and that it is frequently uncomfortable. I feel like I am not getting enough oxygen.

At first I thought it was hyperventilation as I did the test where you measure your control pause, and my control pause was really short indicating that I was hyperventilating.

However, when I then did breathing exercised to reduce the amount I was breathing - I seemed to get worse!

So I'm wondering - what other breathing problems do CFSers suffer? I have gone to the doctor about this and she says that my breathing seems fine to her, but yet it is causing me a lot of distress. I just don't feel like I am getting enough air, and sometimes I find it challenging to breathe at all. Could I be under-breathing? And what can I do to help this?

Sorry if this post isn't clear. Just say if I haven't explained myself properly and I'll have another go lol!

 

[illsince1977]

I believe this is referred to as "air hunger." If anyone thinks I have that wrong, please let me know.

I have been having recurrences of this of late. I had it years ago, but then it seemed to go away after Babesia treatment (or was that coincidental?) I've been thinking of doing a trial of Babesia meds again just to see if it helps. Air hunger is listed as a Babesia symptom.

 

[Sallysblooms]

Yes, I had air hunger. Felt like I was VERY high in the mts. I would breathe fine but didn't feel like oxygen was in my brain. Supplements helped me and I am trying to remember which ones. I know CoQ10 helped. I will think some more. Carniclear too I think.

 

[Sing]

Disautonomia Symptom

Disautonomia is behind a lot of our breathing difficulties. See the Canadian Consensus Definition for more of a description. The brain, in other words, isn't properly regulating breathing, anymore than it is properly regulating blood pressure, gut functions, etc. A lot of this management, which is supposed to be automatic, isn't working well--

 

[Sallysblooms]

OH, yes, I agree at least it was for me. I never had air hunger in 19 years of CFS, but when POTS or Disautonomia began, WHAM! Air hunger as well as all of the other problems with POTS. I am glad I don't have the air hunger anymore.

 

[LaurelW]

I have a different kind of breathing problem. After getting bronchitis and laryngitis twice in a year, I've got a bad case of reactive airway. The more tired I am, the more wheezy I get, and the more I lose my voice. I also lose my voice if I talk more than about an hour a day. If it gets really bad, it's like an asthma attack and I have to use an inhaler. I hate doing this, because Albuterol makes me really ill for a day or two. An attack can also be triggered by nasty fumes like cigarette smoke or perfumes that I encounter in public. I never had asthma before, and I'm in my mid-50s. Has anyone else experienced anything like this?:mask:

 

[Lucinda]

Disautonomia is behind a lot of our breathing difficulties. See the Canadian Consensus Definition for more of a description. The brain, in other words, isn't properly regulating breathing, anymore than it is properly regulating blood pressure, gut functions, etc. A lot of this management, which is supposed to be automatic, isn't working well--

Do you mean the Canadian Consensus Definition for ME?

In any case, I looked up Disautonomia (on wiki) and I do have most of the primary symptoms mentioned - fatigue (obviously), excessive thirst, lightheadedness/dizziness, feelings of anxiety or panic (not mentally induced), rapid heart rate, though I don't know if I have Orthostatic hypotension.

I do also have many of the 'other symptoms'.

However, no doctor has ever mentioned Disautonomia to me before. Are there tests you can have to see if you have it?

 

[Sallysblooms]

There are several. One is a tilt table test. You can buy a heart rate monitor and put it on. Then see what your heart rate is sitting, then after you stand up. I keep mine on all the time. When it is 120, I know to sit down fast. Everyone is different. You can keep track of your blood pressure too. Sitting, standing, laying down. After walking.... Keep it all written down. MOST doctors have NO idea what Disautonomia is. I just saw a new doctor. SHE GOOGLED IT, oy.

Thankfully I have one doc that does know. VERY few do so you have to figure it out yourself first.

 

[SickOfSickness]

I feel there are various types of breathing problems that I have had. Allergies and asthma from food, environmental allergies, heat, cold, humidity, etc. Or getting out of breath easily from doing minor physical activity. I think various parts of my respiratory system get swollen up.

I also swear there can be soft tissues that cause some of those little muscles and things to not be able to fully expand. Sometimes I am having less allergies that hour and some days or weeks my soft tissues are better. And when it can contract and expand properly then the breath feels better. I think our bodies are supposed to use that to tell whether it's a full breath or not, and most of CFIDS/ME patients will have plenty of soft tissue problems and that is such a common one. If that makes sense. I mean it's like a sensor system sort of like bladder problems. I will have very little in my bladder but my brain is telling me I must pee. Well with breathing I'm getting maybe 50% or 90% of the air volume, but it doesn't trigger that sensor to say it was a good breath.

 

[sleepy237]

Breathing problems can arise from hyperventilation. If you feel any tenderness when breathing you might have some allergy response going on. I have a diagnosis of asthma but it is only in response to allergies.

 

[Sing]

You can go to an excellent website, www.dinet.org which is the Disautonomia Information Network site for great information. There was also a good thread here called Disautonomia, I think. I should look it up for you "guys" unless one of you is skilled at this and wants to do it.

Yes, Lucinda, I meant the Canadian Consensus Definition for ME-CFS. Their criteria specify at least two of the following: disautonomic, endocrine or immune system abnormalities.

I have developed increasing problems with disautonomic symptoms as the years go by.