Is Nerve Damage Affecting the Lungs in Fibromyalgia?

The Fibromyalgia and ME/CFS Breathing and/or Circulation Problems Poll: I Experience or have

  • air hunger

    Votes: 35 53.0%
  • shallow breathing or hyperventilation

    Votes: 37 56.1%
  • difficulty taking deep breaths

    Votes: 30 45.5%
  • Mottled extremities

    Votes: 19 28.8%
  • Tingling, numbness or stinging pain in extremities

    Votes: 44 66.7%
  • Raynaud's phenomenon

    Votes: 22 33.3%
  • Shortness of breath

    Votes: 40 60.6%
  • None of the above

    Votes: 2 3.0%

  • Total voters
    66

Tina

Well-Known Member
I have been trying for five days to come up with something to contribute to this thread. How I could contribute to the notion that the lungs and ME/CFS might be related and my brain just can't.

I reported some time back that I have been diagnosed with "suspected" Non Specific Interstitial Pneumonia (NSIP) which is a category of Interstitial lung disease. I have no known risk factors for this; however, my ME/CFS started with a bout of "walking" pneumonia in 2008.

The only way they can confirm this diagnosis (and the only way they will proceed with treatment) is if I have an open lung biopsy done. This is scary, because the drugs used for one type are pretty effective for some types (NSIP being one) but will make other type worse. This is why they won't treat me unless I have the actual biopsy.

The thing that seems apparent to me is that I don't heal well. Until now I had not heard of the term microvasular restructuring and how this might fit in with would healing, really healing from any type of injurious process.
 

Issie

Well-Known Member
I have been trying for five days to come up with something to contribute to this thread. How I could contribute to the notion that the lungs and ME/CFS might be related and my brain just can't.

I reported some time back that I have been diagnosed with "suspected" Non Specific Interstitial Pneumonia (NSIP) which is a category of Interstitial lung disease. I have no known risk factors for this; however, my ME/CFS started with a bout of "walking" pneumonia in 2008.

The only way they can confirm this diagnosis (and the only way they will proceed with treatment) is if I have an open lung biopsy done. This is scary, because the drugs used for one type are pretty effective for some types (NSIP being one) but will make other type worse. This is why they won't treat me unless I have the actual biopsy.

The thing that seems apparent to me is that I don't heal well. Until now I had not heard of the term microvasular restructuring and how this might fit in with would healing, really healing from any type of injurious process.
EDS people have issues with healing too. Could that be an issue?
 
Last edited:

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I have been trying for five days to come up with something to contribute to this thread. How I could contribute to the notion that the lungs and ME/CFS might be related and my brain just can't.

I reported some time back that I have been diagnosed with "suspected" Non Specific Interstitial Pneumonia (NSIP) which is a category of Interstitial lung disease. I have no known risk factors for this; however, my ME/CFS started with a bout of "walking" pneumonia in 2008.

The only way they can confirm this diagnosis (and the only way they will proceed with treatment) is if I have an open lung biopsy done. This is scary, because the drugs used for one type are pretty effective for some types (NSIP being one) but will make other type worse. This is why they won't treat me unless I have the actual biopsy.

The thing that seems apparent to me is that I don't heal well. Until now I had not heard of the term microvasular restructuring and how this might fit in with would healing, really healing from any type of injurious process.
When your health is bad healing can really be rough....

I hope they dig into microvascular system. I would be fascinated to see what they find...Good luck with your lungs.
 

Hari

Active Member
Cort,

For unknown years, mostly more than 15 years, I always experienced some kind of stress in the head while breathing.

In the past couple of years every day my breathing is deepening and experience more freedom while inhaling.

Recently, as I progress towards complete recovery, breathing deepening has stopped, and I feel it is normal. Still after exertion when I take rest or fasting for 48 hours I see lot of freedom in breathing. I also have the same experience when I continuously consume mega nutrition for more than two weeks.


After reading this article I could relate my experience to some explanation. May be it is safe to conclude fasting and good or mega nutrition helped me to recover from FMS / CFS, along with improved lungs function. Good to realize this.

I will keep looking for more info.

***** *****

I have a lot to share with you Cort, especially about my full time job from July 2016.

Lets catch up.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort,

For unknown years, mostly more than 15 years, I always experienced some kind of stress in the head while breathing.

In the past couple of years every day my breathing is deepening and experience more freedom while inhaling.

Recently, as I progress towards complete recovery, breathing deepening has stopped, and I feel it is normal. Still after exertion when I take rest or fasting for 48 hours I see lot of freedom in breathing. I also have the same experience when I continuously consume mega nutrition for more than two weeks.


After reading this article I could relate my experience to some explanation. May be it is safe to conclude fasting and good or mega nutrition helped me to recover from FMS / CFS, along with improved lungs function. Good to realize this.

I will keep looking for more info.

***** *****

I have a lot to share with you Cort, especially about my full time job from July 2016.

.
yes, let's catch up. Congrats on the job :)

Breathing is something I have not done well over the years but which I think could benefit me a lot
 
Yes, breathing issues here too. But I also have apena. I'm not tolerating a CPAP right now so just using oxygen to sleep. Makes a difference.

Don't forget not only checking Lyme and other protozoa but also MOLD. That is proving to be a biggie for me. Along with MCAS. All connected with similiar symptoms.

Issie
i also have sleep apnea and cannot tolerate the cpap; the doctors should prescribe oxygen therapy to those of us like this because i am sure it does help; their attitude is well, learn to tolerate the cpap because that is all i believe in...i have bad taste in mouth for most doctors
 
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Roomer

New Member
I was told I had fibromyalgia many years ago but as I have aged I have noticed the lung issues more including numb finger tips and toes. After reading the article on nerve damage preventing dilation of the capillaries and blood vessels I was wondering how much lack of sun relates to this as nitric oxide is increased by going in the sun by releasing a store of nitrates under the skin by activating it with purely UVA. Refer TED talk and dermatologist and nitric oxide. Also vitamen D and K2 have nitric oxide and artery flexibility properties. Since my regime on these two vitamins (hormone D and vit k2) my BP has dropped significantly. It was getting high. It may be that you need a high level of D3 though not just scraping in on average to get these benefits as I take 5000 iu per day along with k2 to prevent excess calcium building up. Since increasing sun and D3 my numb fingers and toes have improved. Also a TENS machine helps with pain. There is also a neurologist who used CPAC for sleep apnea before discovering a high vit D and B level was just as effective at controlling sleep apnea and healing during deep paralysed sleep. Also earthing may be worthwhile investigating as inflammation is positive charged due to oxidative stress and the earth is negatively charged and barefoot contact with particularly wet sand diverts electrons into body to counteract pain. Apparently grounding or earthing blankets are used in the Toure de France to help riders recover from injuries and pain quicker. This is a conductive sheet with a wire to an earth stake to sleep on or in at night to balance electrical charges in body to ultimately match the negative charge of the earth and be pain free. I think practicing deep breathing or using circular breathing to increase lung capacity or doing yoga would help with pain as well.
 

GG

Well-Known Member
i also have sleep apnea and cannot tolerate the cpap; the doctors should prescribe oxygen therapy to those of us like this because i am sure it does help; their attitude is well, learn to tolerate the cpap because that is all i believe in...i have bad taste in mouth for most doctors
I do 4L/min of oxygen with my sleep machine. My sleep specialist only prescribed 1L/min, and I had to ask to do the Oximeter overnight analysis. I don't typically have any breathing problems, actually able to exercise. Pretty much always have, even thought I don't get a runners high anymore, and it makes me feel worse for a day or more, depending upon how much I (over)do.

GG
 

Farmgirl

Well-Known Member
@Cort Thanks for this information and all the great information you spend time putting on this site!

I am glad you mentioned this, because in the last 4 years or more and my disease has gotten worse, when I am in PEM actively (6-12 hours after doing SOMETHING...okay, something above being in bed or brushing my hair, or petting my pooch) I feel two new symptoms:
1. The muscles around my mouth do not function, so I cannot speak hardly at all until the PEM goes away (and thankful it does, though my husband may not agree :)
2. I cannot seem to catch my breath. Feel like I need some oxygen. This also goes away after forced complete rest, then I am left with shortness of breath on steps and such.

I would be curious to see what the CPET test would show, but I cannot exercise for more than 3 minutes and I wouldn't call it "exercise", but rather, something else. Stretching?

NOT MY IMAGINATION! Yay! :-D
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
@Cort Thanks for this information and all the great information you spend time putting on this site!

I am glad you mentioned this, because in the last 4 years or more and my disease has gotten worse, when I am in PEM actively (6-12 hours after doing SOMETHING...okay, something above being in bed or brushing my hair, or petting my pooch) I feel two new symptoms:
1. The muscles around my mouth do not function, so I cannot speak hardly at all until the PEM goes away (and thankful it does, though my husband may not agree :)
2. I cannot seem to catch my breath. Feel like I need some oxygen. This also goes away after forced complete rest, then I am left with shortness of breath on steps and such.

I would be curious to see what the CPET test would show, but I cannot exercise for more than 3 minutes and I wouldn't call it "exercise", but rather, something else. Stretching?

NOT MY IMAGINATION! Yay! :-D
I wish someone could get you in a lab and test everything...
 

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