• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Cort's latest blog: Is nerve damage affecting the lungs in Fibromyalgia?

Gingergrrl

Senior Member
Messages
16,171
http://www.healthrising.org/forums/threads/is-nerve-damage-affecting-the-lungs-in-fibromyalgia.4541/

Am hoping I copied this link right and wanted to say thank you to @Cort for posting a blog about nerve damage possibly affecting the lungs and breathing in Fibromyalgia. I do not actually have Fibro and am not a member of Cort's board so I cannot reply over there but wanted to post the link here in case it resonates for anyone else.

Shortness of breath remains my #1 symptom and I now believe that auto-antibodies are attacking my phrenic nerve functioning which is indirectly affecting my lungs ability to inhale/exhale a full breath. Am on the path (it's a very long and winding path LOL) of pursuing some treatments that I believe will help me with this once they are approved.

I know I am in the vast minority with this symptom in ME/CFS vs. on neuromuscular and autoimmune boards, it is much more common. But regardless of my label, I was really glad to see this issue being talked about and thought the link/article was very interesting and hoping others do, too.
 

lansbergen

Senior Member
Messages
2,512
Phrenic nerve functioning might be involved (probably is) but I am pretty sure there is more to it. My lung improvement goes fast now but before that could happen my pleura and intercostal muscles/nerves had to heal.
 

Gingergrrl

Senior Member
Messages
16,171
Phrenic nerve functioning might be involved (probably is) but I am pretty sure there is more to it. My lung improvement goes fast now but before that could happen my pleura and intercostal muscles/nerves had to heal.

I absolutely agree with you that there is much more involved and mentioned the phrenic nerve in my case b/c it is the first piece of hard evidence from an EMG that shows something is wrong with my breathing muscles. But I suspect it is much more than this and that other nerves to my lungs and intercostal muscles are affected as well.

I also have nerve/muscle damage to my neck and right arm and sometimes the pain is excruciating or my arm cannot lift a water bottle or type on my phone but I rarely talk about this b/c it doesn't cause me the same level of distress or impair my life like the breathing issue does (even though it can be very annoying at times.)

I was happy to see the lung/ breathing issue acknowledged, especially from the perspective that something could be attacking the nerves like a virus or autoantibody, etc, and makes me hopeful that treatment could potentially reverse it (although guardedly hopeful vs. full-on real hope.)
 
Messages
42
http://www.healthrising.org/forums/threads/is-nerve-damage-affecting-the-lungs-in-fibromyalgia.4541/

Am hoping I copied this link right and wanted to say thank you to @Cort for posting a blog about nerve damage possibly affecting the lungs and breathing in Fibromyalgia. I do not actually have Fibro and am not a member of Cort's board so I cannot reply over there but wanted to post the link here in case it resonates for anyone else.

Shortness of breath remains my #1 symptom and I now believe that auto-antibodies are attacking my phrenic nerve functioning which is indirectly affecting my lungs ability to inhale/exhale a full breath. Am on the path (it's a very long and winding path LOL) of pursuing some treatments that I believe will help me with this once they are approved.

I know I am in the vast minority with this symptom in ME/CFS vs. on neuromuscular and autoimmune boards, it is much more common. But regardless of my label, I was really glad to see this issue being talked about and thought the link/article was very interesting and hoping others do, too.

Hi gingergrrl, i also have possible autoimmunity, and breathing difficulty. see my post, new today on community. What is phrenic nerve prob you have?
 

Gingergrrl

Senior Member
Messages
16,171
Hi gingergrrl, i also have possible autoimmunity, and breathing difficulty. see my post, new today on community. What is phrenic nerve prob you have?

@Jemima, I will look for your post later today and either reply there or here as soon as I can.