Shortness of Breath

[Carebear]

Hi everyone,

I have been experiencing what I would call "oxygen hunger" for about 7 weeks now.  It doesn't happen all the time and seems to start once I have been up out of bed for an hour or so. It is not anxiety.  I don't think it's from exertion.

I do think it's muscular because I can't take in a deep breath during those times.  The muscles or something are tight in the back.  I have had physio, acupuncture and a massage in hopes it will help but nothing. I also feel a lot of mucus in my chest or is it my throat?  I can't tell.

I have a telephone appointment next week with my doctor.  I just want your thoughts ahead of time.  Anyone else ever feel this way?

[Judie P]

My cervical stenosis with myelopathy causes that at times.  I also get a lot of stomach gas where I feel like I cannot breath.  I have fibro as well, but I also have pernicious anemia and a lack of intrinsic factor.

[Linda196]

Carebear, do these feelings corelate to any one activity? For example, after you eat, or after maintaining one activity or position for a while?

Eating can cause upward pressure on the diaphragm, restricting the amount of air the lungs take in and causing "guarding" of the back muscles, while maintaining a position that requires core muscles can restrict the back and chest muscles.

If you have time before your appointment, try "mapping" the air hunger with activity to see if there is any indication of a consistent trigger.

[meirish]

Just out of curiosity, do you have any muscle weakness in any other part of your body,esp the arms and legs, problems with swallowing, etc. I have Myasthenia gravis and sometimes I will get a feeling like I can't breath and have a rope around my chest around my diaphragm area. I have had this for years and when I told doctors they would tell me it was from my asthma.

Found out many years later it wasn't the case. With new diagnosis I was on IVIG for many years and have a medication that I can take several times a day that helps keep this from happening. Other symptoms of this disease are droopy eyelids and one thing that I had for years. blowing up a balloon. I also had a hard time doing the CPR on the Resusi-annie during my mandatory CPR classes as a registered nurse. What a surprise that was for me.

It might be wise for you to see a pulmonary doctor to check out your lungs for any issues related to Sjogrens and seeing a neurologist if the pulmonary doc thinks you would benefit from it. These autoimmune diseases are so sneaky and it is wise to get an opinion cause sometime certain issues can become worse suddenly and then it is a hassle to get a quick diagnosis. Thanks and good luck. meirish

[Carolina]

Dear carebear,

I'm so sorry this is happening to you.  These are exactly the symptoms I have with my COPD (Small  Airway Obstruction) which is a common co-morbidity with my Immune Deficiency: CVID). Air 'hunger', inability to take a deep breath, wheezing, coughing with clear, frothy phlegm.  ICK.

I now have wheezing, mostly at night.  I have a spirometer, which I should use to help expand my airways, but I keep forgetting to use it.  I guess I'll start again!

Hang in there.

ElaineD (aka Carolina)

[sixty]

I'm sorry you're having these issues CareBear.  They sound familiar in that you think they're muscular.  I had many lung tests and the Dr. said my lungs were fine.  My Cardio guy said the same thing.  I finally realized it could be muscular when my upper arm muscles hurt after walking up the stairs.  I know that also sound weird but it happens to me often.  I read what Irish wrote about MG and I wonder if I or you may have that.  How is it diagnosed I wonder.  My breathlessness may be due to muscular problems.  I'm surprised none of the Dr.s mentioned that as a possibility.

[meirish]

Myasthenia gravis is a more rare disease and is found by blood work. Usually a person is sent to a neurologist for assessment and blood work. A family doctor doesn't usually deal with this to diagnose it. Sometimes one has to have muscle testing. There might even be other autoimmune diseases that cause some of this muscular involvement with the breathing. Anything can happen with autoimmune issues. Might be worth talking about with your doctor.

I don't have the breathing issues daily or routinely. They usually turn up when I have more weakness in my body. Kind of no set pattern but who knows. It is worth getting checked out. I felt that I could have this disease for many, many years and mentioned it to doctors and no one paid attention. Took me years to get the droopy eyelid and then I got some attention. This is a very common symptoms of myasthenia. Good luck to both of you. meirish

[sixty]

Thanks for the reply Meirish.  I'll talk to my GP Dr. about my thoughts and see where it goes.

[Carebear]

Looks like I'm way behind with my replies.

Good news is, my breathing difficulties only lasted for 12 weeks. Only.

Cardiologist says my heart is good. He said that given how I described my symptoms, and that they have disappeared, it may have been a virus. I don't know. I had no fever or cough. But he seemed convinced so maybe he's right. Many things going around these days.

I had further bloodwork done by my family doctor.  Iron, ferritin and calcium are low. Hemoglobin has been hovering on the edge of low since the summer.  RBCs are normal in quantity but irregular in size.

Family doctor and I disgusted this, and I just start iron supplements. She's referred me to GI specialist to see if I'm losing blood very slowly that way. I think this is likely.

I forget. Did I mention I'm fatigued beyond Sjogren's fatigue? And weak much of the time. But shortness of breath is mostly gone.

The SOB was worse when doing things like using a hand saw. Yes, I said hand saw. Shoveling and walking on treadmill are fine. Showering causes difficulty in breathing, even now. Is it the heat, bending over or steam?

Let's hope the iron is tolerated and it helps my energy increase.

My doctor said low iron should not cause shortness of breath.  Is that correct?

[meirish]

I will have to disagree with your doctor about the shortness of breath and anemia or low iron. I have anemia pretty much all the time. I have chronic kidney disease 3B which can cause issues that result in anemia but my new kidney doc has not addressed that yet. I also have AVMs which are arterial venous malformations that affect my upper and lower colon plus my stomach.

These are little vessels that cover the intestines and the images of my colon look like there is a fine lace covering it. These will rupture and bleed. Much of the time mine ooze slowly and I will pass blood thru the stool that is not visible. I will not know that I am getting anemic until I start to become weak, my heart will pound hard with activity and I will become short of breath when I walk a lot, do steps, etc.

By the time I get these symptoms my hemoglobin is usually down in the 9 area. When one bleeds slowly our body adjusts to it until the hgb gets pretty low. A fast bleed will give symptoms quite soon and be more noticeable in the stool. This problem is treated by having a colonoscopy and laser treatments of these oozing areas plus small clamps that are attached to the area and fall off as the area heals.

This is a rare problem that has nothing to do with autoimmune issues. One of my GI docs told me that people with kidney disease will get these AVMs. I guess I was present when they handed out a lot of weird health issues as I was born.lol

I will mention something else that happens to me with my Sjogrens. I will get short of breath because the mucus in my airways is so thick and is hard to cough up. I can feel my lung tissue or bronchioles sticking together when I breath at times. I have 3 inhalers that I use every day.

Also, because I have Myasthenia gravis, Sjogrens and a past problem with severely low T-cells (high risk for infection) my pulmonologist put me on albuterol nebulizers plus an Airway Clearance Device. I also mix 2-3 ml. sterile normal saline with my albuterol. This moistens my airways and makes my mucus easier to expectorate. An airway clearance device--just the plain descriptive name--is a vest that I wear that one plugs in and it works like an air compressor and alternately inflates with air and expels it while it vibrates.

This loosens the mucus in my lungs. I had a Mycobacterioum kansasii infection back in 2005 that needed 1 year of 8 special antibiotics a day. This infection is also quite rare and affects people who are immunocompromised. It is also a type of TB that is not contagious and one gets from the air or dirt, etc. surroundings. Hope this will not be too long. Good luck and take care. meirish

[Carebear]

Irish, interesting mention about how our bodies have learned to adapt.  My ferritin (iron storage) is very low, while the iron itself and hemoglobin are low too.

I forgot earlier to say that my C-Reactive Protein was high on my last test (early December). It is never high, sometimes even barely registering. I get this done monthly, and it wasn't elevated during the worst of my shortness of breath either.

Kidney and liver function tests are all normal.

I did start taking magnesium around the time that I began feeling super exhausted and weak. I know you have mentioned that MG can be exacerbated by magnesium but it's a rare disease. Like you said, you were one of the lucky ones who was given everything but the kitchen sink to deal with! So while it's a possibility,  I think I will focus on the iron deficiency and possible blood loss for now.

I also have consistent low white blood count, fluctuating low platelets along with inconsistencies in red blood cell size. I see a hematologist about my low immunoglobulins so this may be up his alley.

I'll add that I haven't been on methotrexate since about May. So what all the doctors have been blaming on this drug, did not improve when I stopped.

Our medical system here is terrible so I don't know if or when I will see a GI specialist.  I don't even know if I can see the one who has been treating me for several years.  I'm putting on my patience cap for now.

Merry Christmas everyone.

[meirish]

I want you to know that years ago I did a lot of research on Sjogrens and ran across a few articles about the effect of Sjogrens on the bone marrow and production of red blood cells. I have had anemia for so long plus I have so many other blood cells that are affected besides my red cells, ferritin, etc. I have maintained that there just has to be some effect on the bone marrow by the Sjogrens or maybe just all autoimmune diseases in general.

I had a 6 ferritin level 15 years ago when I was not having a problem with losing blood. So many of us suffer from anemia that it would not surprise me that we have an anemia that has several causes....just to muddy the waters. Doesn't make much difference in a way cause the same treatment is used for much of this. Kidney disease can result in a certain medication being needed but that has not been suggested for me. I do not absorb iron in my stomach or intestines so the iron infusion is what I need to do.

So many of our autoimmune issues demand that we pay good attention to what our blood work is doing so that we can also get in and have more blood work when we feel our body is going down the tube again. Interesting that your CRP was elevated after all this time. Sign of inflammation and one sign I have never had nor have I ever had an elevated sed rate.

Just hang in there and continue to do what you have been doing and rest when you need to. Rest really is a necessity as any stress sure upsets our systems. Take care, stay warm and God Bless. meirish

[Carebear]

You're right about the focus right now being to get my iron level up so I feel more energetic. And who knows how long I've been deficiency in iron? I haven't had it tested in years.

Another question for you smart folk. I've been taking iron supplements for three days, and I also have terrible diarrhea.  Not that any diarrhea is good!  But for someone who has been chronically constipated off and on for decades, this is disturbing. I feel for anyone who experiences this routinely.

Is this possible? And if so, I'll need to try something else if this goes on much longer. The prescription says two pills but I only take one because I was thinking it would cause constipation. Wrong!

[meirish]

I feel sorry for you cause you are one of the few people that get the bad diarrhea with oral iron. You might want to try taking something like Metamucil which will add substance or bull to the stools so they should be less like diarrhea. This is a product OTC that many people use and it is a stool softener not a laxative. It doesn't require a prescription but often doctors will suggest it without using a script.

If this doesn't help you out it would be good to be able to call and talk to your doctors nurse. Usually with an issue like you have the doctor is able to advise over the phone. If he feels you need to be seen he will advise the nurse to help you make an appointment. It seems like you really wouldn't want to take 2 of these pills at the same time. That was just smart remark!!!!!

Just some info that I learned many years ago. I was given iron tabs one time when my ferritin level was 6 or so plus anemic and they had me take Vitamin C at the same time as it was felt that this helps with the absorption of the iron. Now, the medical establishment may not be following this protocol anymore and I am not suggesting that you take the vitamin C....however, you may want to ask the doctor about this. The reason I mention it is that if you can get your iron level up faster then you probably won't have to take the iron tabs as long. At least one can hope that would be the case.

Also, be aware that if you are having issues with the diarrhea and possibly absorption of the iron that iron IV or infusions can be given to get the blood level back up to norm.

I do not absorb iron so I have to have the iron infusions. I go for my second one in a series of 2 infusions on Wed this week. Interestingly enough, this last episode or continuing episode of anemia for me came with symptoms that showed up when my hgb was 10.4. Usually I don't have symptoms until I am in the mid 9s of lower. We just never know about any of our medical issues do we. Always subject to change. Good luck and may you have a Happy New Year. meirish

[Linda196]

There are  also different formulations of iron supplements, like Ferrous gluconate, Ferrous fumarate and ferrous sulfate, each providing different available amounts of elemental iron (fumarate the most, gluconate the least) and the body may react differently to each. In other words, you may gave adverse effects from one but not another, but absorb a different amount of iron. A pharmacist might be able to help you choose one that works better for you.