Issues with breathing

Brain and nerves
1

Hi Does anyone have issues with breathing when you are having relapse? When I have a crash (relapse) it feels almost like an effort to breathe. Its hard to describe.  It feels strained but not a struggle ... Probably not making sense ... Sorry 

2

You might be describing "air hunger," which is sometimes experienced with ME/CFS. I had air hunger when I first got this illness, and it eventually subsided.

3

Hi Donna, 

Yes! I know exactly what u mean. For me it is worse when I am lying down too ( or maybe I just notice it more then?) 

It almost feels like I am 'pulling' my breath. 

X

4

A lot of people with anxiety have the breathing problems in relapse

Richard

5

Hi Jackie, 

Did u find out what causes the 'air hunger '

I think u describe one of my symptoms perfectly. 

Thanks 

6

I went to a cardiologist and wore a heart monitor for a day, to rule out heart problems. Results were normal. I don't think it's known what causes this symptom. Just something else we have to live with, that hopefully goes away after a time.

7

Thank you for responding. The way I feel has me questioning every including my sanity! The list of symptoms attatched to cfs is endless. Although the thought of having diagnosis confirmed is beginning to scare me. It wont change how bad symptoms are but hope will fade as GP fairly negative 

8

I have started waking up during the night gasping for air and it's very frightening.  It doesn't seem to happen during the day though.  This has only just started for me although other symptoms for CFS have been going on for some time.  Apart from the usual syptoms (I have 14 of the 17 symptoms already listed on the CFS/ME website), I have also had a sore throat for almost 8 weeks now.  When will it ever end? 

9

The sore throat indicates you are having a flare-u--you are in relapse mode.New sypmtoms can be very scary. Take is real easy.

10

Sometimes my blood pressure can go up causing my breathing . I keep a wrist pressur cup to check my pressure. If it up I can lay down take my med and within a few minutes I can breathe better. 

That's what works for me. U should ck with UR doc everyone is different and what causes or helps me may be totally different that what u have issues in UR breathing.

11

I have immune problems, latest diagnoses Sjorgrens/Lupus, I have bouts of feeling sick, pain, stiffness and I feel as if I have had a thump between my shoulder blades, when breathing. I haven't seen a Dr. About it yet. Tomorrow I have a new knee replacement.

12

In 1995 I had a flu type virus lasted weeks eventually left me with debilitating illness . Foggy brain no concentration pain in muscles and joints thudding heart palpitations headaches air hunger  numbness and tingling in arm and legs inner tremors wooziness etc etc plus horrendous fatigue !!!!! My life , I can only describe as a nightmare !!! I saw many doctors and different specialists and because all my blood tests came back normal I was " diagnosed" with CFS told to buy a book on it and just live with it!!!!!!!! There are no tests for ME/CFS ME as I understand it means swelling of the brain tests were done on sufferers "diagnosed" with this illness and results showed there to be no swelling so it became CFS ! This " diagnosis" makes the illness sound trivial !  10 years on I found a doctor who believed in treating the symptoms not blood tests gave me thyroxine and within weeks I was at least 50/60% better. Now years later I have been diagnosed with an autoimmune disease , hashimotos after having specific tests for antibodies and told this has been my illness from the beginning. I have mentioned this before to Donna, there is no cure only treatment , which. Is thyroxine, I am still not 100% well but my life is not the awful struggle it was . This may not be the answer for everyone but it could be yours !!!!!!

13

Hi seen GP but he said would run specific test later but referring me to cfs clinic which am posting about.  I guess that makes it official. 😣😣😣😣

14

Hi Donna, I also have breathing problem, it' only happens when I have over do it. Apparently it's part of having CFS, my CFS counciler told me not to worry.x

 

15

Glad that you've found some relief with Thyroxine.  I tried thyroxine a year or two ago as I thought my problem could have been caused by a hormonal deficiency as my symptoms appeared to be similar to an under active thyroid.  It didn't work for me unfortunately but it should be considered by other sufferers.

16

Hi Donna

It makes a lot of sense!

A lot of me/cfs patients have problem with low oxygen levels and get breathless! And when feeling really exhausted it takes all your energy to take a breath.  I for one have this problem which gets even worse when I relapse! I get out of breath just walking a few metres!

The problem is that if oxygen levels are below 94% people can have problems with anxiety and no concentration!

I found this out most recently when I was in hospital after operation by looking at my chart and on the back it was printed what happens if oxygen levels drop!

I was given oxygen after operation and oxygen levels went up to 96%(had been 93% prior to surgery and dropped back down to 93% once oxygen was taken away).

Even though this was shown as an alert on my chart...It was not treated and I was sent home!

I have since been doing research on the effects of low oxygen levels and  oxygen concentrators.

I am  going to make appointment with my GP to ask for a breathing assessment once I am fit enough to get to the surgery!

For the short time I was on oxygen I felt warm inside(I very rarely feel warm) and

my brain had no fog!  My temperature was recorded as 36degC throughout my stay and it went up to 37degC when I was on the oxygen!

 

17

I've just bought myself a pulse rate / oxygen monitor to put on my finger.  I'm usually between 96-99 oxygen.  However, whenever I go below 95 I'm taking bigger breaths.  Mind you sometimes I am taking bigger breaths when I'm at 98.  Another ME/CFS strange thing?

18

Hello... I'm new here but I also have sleep apnea along with several other disorders including CFS. The gasping for air in the middle of the night sounds like a sleep apnea symptom. Have you had a sleep study done? They can be an inconvenience but they aren't painful. Also, you may consider asthma or something called costochondritiaffects the muscles in the outer chest walls. It can be painful but not dangerous and will make you feel like you are gasping for air. A heating pad helps. But nothing will help asthma except an inhaler or staying away from an allergen that may be bothering you. Also, for any women who might be reading this there is the consideration of anemia. I usually become breathless when I am anemic and that happens once a month. Sigh. I am sure I am not the only one who is really sick of this disease.

 

19

That other symptom/problem is called "costochondritis". It is pain in the outer muscles of the chest walls but does not affect the heart.  I couldn't edit once I posted. :-)

20

Hi ...

What's wrong with this site?  I nearly finished my response and it disappeared!!!  Having to type it all again and the first one was an effort in itself!!!

I had said that I'd had a bad week with no energy to even read the messages here never mind answer or comment on any.  Work is piling up again and it's depressing to say the least at the thought of having to catch up yet again.  😟

I have had asthma for some years now.  I take the antihistamine Fexofenadine (for an allergy to something I'm breathing in), and also the blue inhaler Salbutamol and thought they were sufficient.  The gasping for breath during the night hasn't happened the last few nights, it's been the reflux of acid instead!  Can't win! 😠

As I don't have any pain as such in my chest, it's probably not costocondritis.  Apart from reflux, I sometimes get a strange dull, achy tightness where you get heartburn, which is very unpleasant and is only relieved by burping which I find difficult to do.

Regarding sleep apnoea, no I've not had a sleep study done, but strangely, my husband and I have been taking our oldest daughter (who's in her late 40s) to the sleep clinic at Wythenshawe Hospital for nearly a year now.  She has the wear a mask, connected to a machine, over her mouth every night.  Can't be very pleasant for her but she says it helps and she's not falling asleep during conversations now.  I'll see how the gasping goes and if it does continue, I'll speak to the doctor and see if he's interested!  After 65, they tend to fob everything off as 'it's your age you know!  At 72 I'm at the wrong end of the scale.  

Many thanks for your reply and help. 😀