I used to have difficulty breathing the first couple years I was sick (I'd guess) and I was put on zithromax. Sometimes it would help. Then I had my tonsils removed and it's possible that's what helped so much. My doctor also put me on advair and something else once. And I still take Albuterol and it helps a little. But that's my shattered and shady recollection of my breathing problems.

I have the same experiance. I don't know if I have the cfs or not I haven't been able to see a doctor without medical insurance, but I have the same symtoms of being tired oh so tired and I hurt so much and like you said I am out of breath, If I don't go and use the restroom before I go anywhere I will be breathing so hard that I will wet on myself and the embarassment of it. I did last year when the bathroom was down at my job and had to walk over to the other side of the building and before I could get in the stall i wet on myself and couldn't stop.

I have experienced it during any exertion, (even just turning in bed!) during a crash period.

Oh, I'm so glad you posted this!

Shortness of breath has been a huge problem for me from the onset and it's not a symptom that seems to be talked about much.

I believe, at least for me, that it's related to the autonomic dysfunction. I was very fortunate to have a doctor put me on beta blockers (tenormin, then switched to pindolol during pregnancy). It makes all the difference for me. I'd say it's worth a try if you can get a doctor to prescribe it. I've tried going off several times over the years with drastic results that I never fully recoverd from. I also had a positive tilt-table test which is more common with CFS, although my cardiologist isn't familiar with CFS.

Without the medication, it feels like it's taking all my energy just to breathe and I can hardly move about the house and taking a shower is extremely difficult to impossible. I think I'd be totally bedridden without out. I still get short of breath easily. Sometimes it gets so bad I can't even complete a sentence, say more than a few words, without catching my breath.

I've tried Advair and other inhalers in the past but didn't seem to notice improvement.

I'm also really interested in hearing other's experiences in this area.

I wanted to add that shortness of breath can also be a symptom of anxiety, something doctors are more apt to attribute it to. If you have anxiety by all means treat it, but don't settle for a doctor's diagnosis of anxiety if you know that isn't right for you.

JOE - Thanks for your post. I really think mine may be due to FM/CFS or it could be underlying ANEMIA or THYROID or etc. Will be having blood work to rule out. Was given a new med to help with the potential FM/CFS thing called Savelle. Will see how that helps/works.

WAITINGFOR - If you can find a clinic with a sliding fee, you could go there as it is based on income. FURTHER, any facility which receives any $$ from the Gov. MUST HAVE A LOW INCOME PROGRAM or a write off program. MANDATORY AND DON'T LET THEM YANK YOU AROUND!

Now, if you read up on FM, there are 18-20 "trigger points" www.webmd.com and you can "test" yourself to see if you have them. Of course to make it "official" you need a rheumotologist to say so. Thanks for your post.

LUZI - Thanks for your reply. I have it just getting a load or two of laundry gathered up for wash. My dr apptmt today, he acknowledged the FM/CFS issue and didn't throw the usual "are you depressed" crap that I've heard so often before that makes one want to scream! He gave me a sample of Savelle which is "technically" for FM but may help the CFS as CFS is a major symptom of FM. At least he's understanding and trying. Thank God he's not a DO with a God-complex or I may have to sock him one! LOL

IWANTMORE - Thanks, it is all of the above responses that make me more sure, and therefore less afraid, that it is truly the FM/CFS thingy. Not saying that I won't have the ANEMIA & THRYOID checked as it runs in my family but still, since I was "fine" as one does get with this chronic malady, it makes me more sure that it goes with the flare even tho I didn't experience the last flare in 2004.

I understand what you are saying. I have had an Astma attack twice in my life. They aren't fun.
If you have had CFS for a long time then it can effect the "Lung Volume" which inturn limits the ability to take in lots of oxygen.
On the other hand "a pred shot, and 2 pred paks" should have done the job re your bodies ability to harvest oxygen.
I think there may be something else going on here.
Yes, irregular breathing; holding the breath inappropriately; breathlessness upon exertion are all autonomic nervous system manifestations of CFS but are you sure its not something like an anxiety or panic atack that limiting your breathing.
I have had one anxiety attack before it was horrible. They can sneek up on you and I didnt even realise I was anxious. Do you suffer insomnia, have you recently experianced severe headaches of a new type, pain in the muscles and/or joints or tender lymph glands with a recurrent sore throat.
The reason I ask is that these are frequantly indicative of a heightened CFS crash where we ar vulnerable to shallow/ shortness of breath.
You have my full empathy.
Deep breathing exercises are important for CFSers. Breathing in, all the way down to your belly button and holding it for a moment before exhailing helps maintain lung volume.
Please if you think it is something related to anxiouty get it sorted out with a quack.
I am on Rivotril which is an anti anxiouty Benxo' and it really helps with my sleep.
Dr Paul Cheeney the great CFS doctor found that Rivotril (Rivotril aka Klonopin aka Clonazepam) works well for CFS. Referbelow. http://www.prohealth.com/library/showarticle.cfm?

In this article Rivotril aka Klonopin aka Clonazepam is refered to a Klonopin, scroll down;
id=3154&t=CFIDS_FMpatients.http://www.cfs-healing.info/database.htm

Fully empathise,
Cheers
Al

I also have trouble breathing upon exerction. I have Ra and CFS, Hypothroidism, and COPD. I don't know if it is one or all that makes me short of breath. Just laying down in bed and pulling the cover up makes me short of breath. I get really short of breath if I try to do some work or walk or anything for over 5-10 min. I have to sit down and rest awhile. I use spiriva and symbicort and they help some but not much. I guess we just learn to pace ourselves.
Hugs

I forgot to add I also have FM.

HEY TO ALL WHO POSTED - UPDATE - My new dr has me on SAVELLA and it seems to be helping with the fatigue which is also helping somewhat with the breathing. Hmmm, who thought you could actually be to physically tired to breathe? Go figure.

Anyway, hope this is of use to you all. No, I am NOT BACK 100% but I am getting a bit better each day. The breathing will probably be the last thing to come back as it was the last thing to go.

Hugs & best wishes to all.

I have an anxiety disorder along with my CFS. During an anxiety attack, the breathlessness is really nasty. I know what it is though, and I know how to slow it down!!

Since the onset of CFIDS I've noticed that even heightened emotions during a telephone call can leave me short of breath. I think this happens with a lot of us.

As far as any kind of exertion, yes, that causes breathing difficulties as well.

If you are tested by a pulmonary doctor to be sure you have no lung disease, that would probably be the best way to start an investigation into breathing difficulties.

If those tests come out clear, then anxiety or the CFIDS alone could be the cause of your shortness of breath.

See a good doc on this one!!

Hi, A few months ago my breathing got so bad I had to call an ambulance. I was checked out and despite the fact that I was struggling for air was told there was nothing medically wrong. I researched it online and found that CFS sufferers somethings experince what is called 'air hunger'. To me it felt like I wasn't getting enough oxygen and was wheezing and gasping alot. It led to alot of panic and panic attacks because of the feeling of suffocation. I used a homepathic remedy for breathing difficulties and some herbal medicine and rested alot and my breathing is back to normal. It stopped feeling severe after a few days of treatment. I'd say its worth getting any breathing difficulties checked out by a doctor as it can nice to know its not serious, but don't be surprised if you're told there's nothing the matter medically. However I found alot of support and understanding from alternative medicine. Hope that helps!