Almost crippling breathing problems?

[David Tyrer]

Hi guys,

Thanks again for having me here.

As I said in my introduction - I was diagnosed a few weeks ago and referred to the CFS service here in the UK.

Only problem is I've been waiting almost 18 months for some answers and since March to get a referral. I had a lot of private testing done because my NHS GP was adamant it was anxiety without doing any investigation.

I went private and have since switched NHS GPs once I couldn't afford it anymore. Due to all the testing I'd had done my GP referred me to General Medicine, who sent me for a few more tests which showed absolutely nothing.

Anyway, I finally made it to see CFS team at the Royal Liverpool Hospital and, in the Dr I saw there's opinion, I tick all the boxes. But he's stumped by my breathing problem.

It started last July after a virus, I stupidly carried on jogging whilst I had the virus and immediately noticed I was struggling to breathe properly on exertion. Since then, it's got the point where I struggle to breathe in general. Even slight exertion leaves me feeling exhausted, gasping and hungry for air.

At night, it often feels like my sides, chest and abdo are all very weak and my breathing is chronic when I lie on either side or my back, so I have to lodge myself in a certain position to be able to feel like I can even take semi-OK inhales.

The whole thing feels muscular, like there's a palsy or weakness but nothing I've had tested has shown anything obvious. There's definitely diaphragm involvement in the sense that the weakness seems to stem from around that area.

I also struggle to complete yawns a lot these days and I feel like my nostrils are tight, constricted almost and sometimes they feel very 'warm' inside. I struggle to be in hot rooms or, for instance, the warm air up North in the UK when it was very humid during the summer nearly killed me sometimes.

I also struggling with breathing stopping while I'm falling asleep (been referred to a sleep study).

So my question is: does this sound familiar to anybody and are there any answers you've been given?

Thanks guys, really struggling with this.

Dave

 

[roxi]

Hi guys,

Thanks again for having me here.

As I said in my introduction - I was diagnosed a few weeks ago and referred to the CFS service here in the UK.

Only problem is I've been waiting almost 18 months for some answers and since March to get a referral. I had a lot of private testing done because my NHS GP was adamant it was anxiety without doing any investigation.

I went private and have since switched NHS GPs once I couldn't afford it anymore. Due to all the testing I'd had done my GP referred me to General Medicine, who sent me for a few more tests which showed absolutely nothing.

Anyway, I finally made it to see CFS team at the Royal Liverpool Hospital and, in the Dr I saw there's opinion, I tick all the boxes. But he's stumped by my breathing problem.

It started last July after a virus, I stupidly carried on jogging whilst I had the virus and immediately noticed I was struggling to breathe properly on exertion. Since then, it's got the point where I struggle to breathe in general. Even slight exertion leaves me feeling exhausted, gasping and hungry for air.

At night, it often feels like my sides, chest and abdo are all very weak and my breathing is chronic when I lie on either side or my back, so I have to lodge myself in a certain position to be able to feel like I can even take semi-OK inhales.

The whole thing feels muscular, like there's a palsy or weakness but nothing I've had tested has shown anything obvious. There's definitely diaphragm involvement in the sense that the weakness seems to stem from around that area.

I also struggle to complete yawns a lot these days and I feel like my nostrils are tight, constricted almost and sometimes they feel very 'warm' inside. I struggle to be in hot rooms or, for instance, the warm air up North in the UK when it was very humid during the summer nearly killed me sometimes.

I also struggling with breathing stopping while I'm falling asleep (been referred to a sleep study).

So my question is: does this sound familiar to anybody and are there any answers you've been given?

Thanks guys, really struggling with this.

Dave

Hi,Dave

I have exactly the same issue. Its actually one of the most debilitating symptoms i have. Not only that even the smallest exertion like getting out of bed leaves me out of breath, im at the point where most of the time i steuggle to speak because lack of air and energy in the chest. Very hard to explain. Its a mixture of breathlesness with weakness in the chest area, trembling, pain, gasping for air. Im also in the Uk. One doctor said its anxiety!!! I lost it a bit.

Because of the inability to speak i almost isolated myself completely, i simply struggle to keep a five minute conversation without gasping for air.


I am planning to do a chest x ray, probably privately since i doubt a gp would send me for one... they just refuse to listen or even try to umderstand...

I will keep you imformed if that x ray will show anything.

All the best and dont loose hope.

 

[David Tyrer]

Hi roxi

Have to say, it's a relief just knowing somebody else finally shares my symptoms.

I've had people admit similar but never the same. The fact you also have that 'weakness' tells me we have the same problem. My sides and abdomen often feel very weak as well.

Do you sometimes feel as if your chest is about to sort of.. collapse when you're lying on your back at night after an energy sapping day?

I've had all kinds of xrays, scans, spiro testing but it all appears fine. I feel like it's a muscular weakness or a respiratory issue that they're missing. I'm hoping you get some answers soon.

Please let me know how you get on.

Dave

 

[roxi]

Dear Dave,

So strange, yesterday I actually came on the site to look for people that complain of breathlessness,jut to see that I am not alone with this symptom. And that I spotted your post.

It is very reassuring when someone else goes through what we re going through. It makes us feel less isolated and less afraid that what we are going through is complete scary novelty..

I suppose in a way the fact that your x ray doesnt show anything is a good thing, but on the other hand i would rather they find something and treat it than having these horrendous symptom and not being able to do anything to them.

Refering to your question with the chest collapsing in itself, what I sometimes feel after an intense day is extreme pressure on my chest, its like a force is absolutely crushing my chest. I suppose that has to do with extreme fatigue and exhaution. Its like the body/chest area collapses into itself due to complete lack of energy.

I also mention that the trembling,weakness sensation extends to my heart too, so the whole chest area.

Yes,once I manage to do that x ray, I will keep you informed if it reveal something of relevance to us.

I have recently started the nimodipine treatment I have found in a book and im on valacyclovir to for almost 3 months now, I will let you know if it will make any difference.

All the best,
Roxana

 

[Merida]

Please read Jennifer Brea’s story and history. At Medium.com. ( main character in movie Unrest) Her symptoms started with a virus. But now 7 or 8 years later she was finally diagnosed with craniocervical instability and tethered cord, had several surgeries and is in remission - no longer could be diagnosed with M.E./ CFS. She had been very seriously ill. My CFS and multiple symptoms are also structural, after an injury. High intracranial pressure.

 

[David Tyrer]

Hi Merida, I will definitely check this out.

Thanks for taking the time out of your day to respond!

 

[Merida]

@David Tyrer @roxi
I talk a lot about structure, but I now have to consider Lyme disease. Hope you have both been checked for Lyme and coinfections. I had one tick bite in Virginia in 2010 and am positive - CDC criteria. Important - the screening test was negative, but finally got the entire panel done - IgG western blot, which is highly positive.

My brother ( who has been having severe breathlessness, severe fatigue, pains, etc etc) has just been diagnosed with Lyme and is hospitalized on IV antibiotics. He does not remember ever being bitten by a tick.

Also, important to check into the coinfections that can come with Lyme.
This Lyme/ coinfection problem is huge ! Please read, read, read.

 

[Issie]

Hi guys,

Thanks again for having me here.

As I said in my introduction - I was diagnosed a few weeks ago and referred to the CFS service here in the UK.

Only problem is I've been waiting almost 18 months for some answers and since March to get a referral. I had a lot of private testing done because my NHS GP was adamant it was anxiety without doing any investigation.

I went private and have since switched NHS GPs once I couldn't afford it anymore. Due to all the testing I'd had done my GP referred me to General Medicine, who sent me for a few more tests which showed absolutely nothing.

Anyway, I finally made it to see CFS team at the Royal Liverpool Hospital and, in the Dr I saw there's opinion, I tick all the boxes. But he's stumped by my breathing problem.

It started last July after a virus, I stupidly carried on jogging whilst I had the virus and immediately noticed I was struggling to breathe properly on exertion. Since then, it's got the point where I struggle to breathe in general. Even slight exertion leaves me feeling exhausted, gasping and hungry for air.

At night, it often feels like my sides, chest and abdo are all very weak and my breathing is chronic when I lie on either side or my back, so I have to lodge myself in a certain position to be able to feel like I can even take semi-OK inhales.

The whole thing feels muscular, like there's a palsy or weakness but nothing I've had tested has shown anything obvious. There's definitely diaphragm involvement in the sense that the weakness seems to stem from around that area.

I also struggle to complete yawns a lot these days and I feel like my nostrils are tight, constricted almost and sometimes they feel very 'warm' inside. I struggle to be in hot rooms or, for instance, the warm air up North in the UK when it was very humid during the summer nearly killed me sometimes.

I also struggling with breathing stopping while I'm falling asleep (been referred to a sleep study).

So my question is: does this sound familiar to anybody and are there any answers you've been given?

Thanks guys, really struggling with this.

Dave

Look into Mast Cell Activation syndrome. One of the medicines for it helps asthma. Heat aggravates it as does exercise, strong emotion, sex etc. Raising head to sleep seems to help both it and dysautonomia. So those two things would be worth looking in to.

 

[David Tyrer]

@David Tyrer @roxi
I talk a lot about structure, but I now have to consider Lyme disease. Hope you have both been checked for Lyme and coinfections. I had one tick bite in Virginia in 2010 and am positive - CDC criteria. Important - the screening test was negative, but finally got the entire panel done - IgG western blot, which is highly positive.

My brother ( who has been having severe breathlessness, severe fatigue, pains, etc etc) has just been diagnosed with Lyme and is hospitalized on IV antibiotics. He does not remember ever being bitten by a tick.

Also, important to check into the coinfections that can come with Lyme.
This Lyme/ coinfection problem is huge ! Please read, read, read.

I am definitely now considering getting tested for this. You aren't the first person that's suggested Lyme disease to me and it isn't something that's routinely tested on the NHS.

What is the full panel for this? I'm looking at medichecks right now and they offer 2 tests: https://www.medichecks.com/lyme-disease-tests/lyme-disease-elisa

Thank you once again for a great reply.

 

[David Tyrer]

Look into Mast Cell Activation syndrome. One of the medicines for it helps asthma. Heat aggravates it as does exercise, strong emotion, sex etc. Raising head to sleep seems to help both it and dysautonomia. So those two things would be worth looking in to.

Keep saying I'll look into this and forget (memory probs) but I will definitely read up on it as I'd never heard of it before joining this forum.

 

[Issie]

FYI, there have been alot of false negative Lyme test. My doc, if he expects it strongly treats it. I did the whole antibiotics route first and because it was years after the fact, that didn't work. Herbals working better for me. Also very important to do detoxing.

 

[David Tyrer]

FYI, there have been alot of false negative Lyme test. My doc, if he expects it strongly treats it. I did the whole antibiotics route first and because it was years after the fact, that didn't work. Herbals working better for me. Also very important to do detoxing.

I actually have a parasite detox that I've been holding off on as I know it can really give you problems while you're doing it. Is that what you mean by detox and herbals?

 

[Issie]

Parasite cleanse is important. But making sure the liver and kidneys are detoxing properly. Especially liver. The Cowden protocol is being used alot for Lyme. He has a whole package. I know someone using it and he is swearing by it. I have a Functional doc and she has helped me. We have been treating Lyme and CIRS together. Just added an herbal for retrovirus and having better support/benefit than ever before. It's a long process. But there has been improvement with me.

 

[Kristine]

Hi David,
I just recently started having the same issue. My hearts been checked and is fine, but when I get out of the shower I have same problem. I am very winded and it takes a lot of water to get me back to normal, something to do with the exertion and heat. Many CFS patients experience this I read. And as you said it's now when I exert myself, any type. I think I'm progressing, my doctor confirms it, but I haven't had the opportunity to try antiviral, or any of the meds people discuss on here. No CFS doctor in my area. Was going to go to Florida to meet with one as I vacation there. I don't know the answer but can relate.

 

[debs]

Aha, I am able to post today. Somebody fixed something. Thank you.

David, I was trying to tell you I had terrible problems a lot like yours and I actually thought my diaphragm was partially paralyzed. I was websearching like a madwoman for "paralyzed diaphragm" lol. I had to force myself (ribcage) to get air in, and it wore me out. I had an X-ray done. I thought a nerve was pinched. Of course no one believed me. It took some time but eventually tested positive for Lyme and Ehrlichiosis. Get some antibiotics now and test later.

 

[Apo Sci]

I think what you may be experiencing is due to inflammation of the blood vessels are a result of excessive viral infections. One finding that supports this is that cardiovascular disease is common in ME patients. The inflammation narrows the vessels and makes it harder to transport oxygen. Curcumin as C3 or Long Vida supplements are excellent for countering it. Give it a try.

 

[David Tyrer]

Aha, I am able to post today. Somebody fixed something. Thank you.

David, I was trying to tell you I had terrible problems a lot like yours and I actually thought my diaphragm was partially paralyzed. I was websearching like a madwoman for "paralyzed diaphragm" lol. I had to force myself (ribcage) to get air in, and it wore me out. I had an X-ray done. I thought a nerve was pinched. Of course no one believed me. It took some time but eventually tested positive for Lyme and Ehrlichiosis. Get some antibiotics now and test later.

Hi Debs, I have been utterly convinced for over a year that my diaphragm is paralysed, it even feels that way when I'm breathing. I've had every type of testing done that I can think of and none have found anything.

I am definitely going to order this test for myself. If it comes back positive, I may ask my GP for a second test on the NHS, just to be sure.

Funnily enough, the one thing I've not had since all of this started was antibiotics. There's never been any 'reason' for me to have them. I even considered buying some from another country, that's how desperate I got to try even weak antibiotics at one point, so I'm glad you've shared your own experience with this.

How are you doing these days?

 

[David Tyrer]

I think what you may be experiencing is due to inflammation of the blood vessels are a result of excessive viral infections. One finding that supports this is that cardiovascular disease is common in ME patients. The inflammation narrows the vessels and makes it harder to transport oxygen. Curcumin as C3 or Long Vida supplements are excellent for countering it. Give it a try.

Hi Apo Sci,

And thank you for your response. I will definitely check these supplements out. I'm open to literally anything nowadays.

Have you had this problem yourself?

 

[debs]

Hi Debs, I have been utterly convinced for over a year that my diaphragm is paralysed, it even feels that way when I'm breathing. I've had every type of testing done that I can think of and none have found anything.

I am definitely going to order this test for myself. If it comes back positive, I may ask my GP for a second test on the NHS, just to be sure.

Funnily enough, the one thing I've not had since all of this started was antibiotics. There's never been any 'reason' for me to have them. I even considered buying some from another country, that's how desperate I got to try even weak antibiotics at one point, so I'm glad you've shared your own experience with this.

How are you doing these days?

Sorry to hear this. "Paralysed diaphragm" was a strange and scary feeling, and when no one found anything it was very lonely indeed. I know you are suffering and my heart goes out to you. My Lyme test came back negative at that time. I had terrible pain in my neck but no "proof" after x-rays of neck only showed mild degeneration. I was in pain (and private tears) every day but forced myself to work until neurological problems were so bad I was afraid someone would get hurt (I was a driver and literally blanking out). The story gets worse and is ongoing, and I will post if you're interested. At this moment in time I would rather focus on helping you find a way to convince your GP to give you doxycycline. NOW.
FWIW: The Lyme bacteria likes connective tissue, your weak spots, and nervous system, etc. It will sit there patiently until you give it a chance (stress/illness/other infection) to expand its empire.

 

[Apo Sci]

Hi Apo Sci,

And thank you for your response. I will definitely check these supplements out. I'm open to literally anything nowadays.

Have you had this problem yourself?

Yes. I'm pos for HHV6 and past EBV and definitely had limitations of breathing with exertion. Also noticed that I was much more sensitive to food left in my mouth from a meal causing stuffy nose. I think it's caused by the nitrite effect from bacteria decomposing food residue. Brushing and flossing after meals helped greatly to decrease it.