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[stacdliw]

I was diagnosed with AN in February 2009 after suffering 14 years with Chronic Fatigue Syndrome and five years with moderate gastroparesis. My GP sent me for AN testing when I developed obstipated constipation and a colon prep did not produce a bowel movement.

Shortly after my diagonsis, I developed severe shortness of breath and went through a battery of heart and lung tests which, luckily, were all normal. The cardiologist referred me to the electrophysiologist who said that my AN was causing exercise intolerance in which my heartrate, regardless of the level of exercise, was remaining at the level of rest. Unfortunately, he told me there was nothing he could do to medically manage this problem. Though I do experience mild orthostatic intolerance, he did not feel that I should undergo a Tilt Table Test, though he felt in 2-3 years I would develop POTS.

By June 2009, the exercise intolerance had increased in severity to the point where on some days I could no longer walk through stores, do chores around the house, or climb stairs. I have gotten so out breath that I've almost passed out 3 times. By October, I qualified for a handicapped parking sticker and I was riding the motorized scooters in stores. The severity of my breathlessness can vary from one day to another and even within the day.

Between the fatigue, nausea, fibromyalgia, migraines, and the breathlessness, I rarely have a day that I feel half-way decent. I've been on disability for the past 5 years because my severe GERD has caused my voice to be extremely hoarse and as a speech pathologist, whose specialty was voice disorders, my job became impossible. Somehow, through all of this, I have maintained a relatively good outlook of life. I realize that this disorder is life altering, but at least, it's not life-threatening.

I've been lurking on this board for a while and I've noticed that most members tend to have POTS as their most disabling symptom. I was wondering if anyone else experiences the severe shortness of breath that I do. I feel so isolated. Nobody, my doctors or my family/friends, seems to understand what I'm going through. Heck, I don't understand it myself. The chronic fatigue syndrome and gastroparesis changed my life, but. now when I'm well, this shortness of breath has isolated me even more.

Any suggestions?

[erikainorlando]

Welcome.

I relate....altho I have POTS and had onset after a virus. I am breathless a lot, beta blockers help me quite a bit but I have had to learn to modify my life. I have to go much slower and plan on several hours of laying down and not feeling well at all in the afternoon. I drink a lot of liquids and eat a lot of salt. But so much of it has just been accepting the illness and learning how to cope. I hope that doesn't sound too depressing.

You will find a lot of support here on the board and tons of information. I find that informaiton really helps me accept POTS/dysautonomia and learn how to make the most out of my life.

Good luck and hope we hear more from you.

Erika

[Chaos]

Hi and welcome to the forum! Sorry that you're having such a hard time of it with all the medical issues.

I'm not sure my shortness of breath is just like yours since my heart rate DOES go up with exercise but I can certainly relate to the feeling of being short of breath and having "normal" stress tests and pulmonary function tests. My O2 sats are always really good too. I had surgery in July 2009 and then got very sick 12 days later. The doctors initially thought I had a staph infection and then diagnosed me with mono. Only problem was I never had mono symptoms and one of my biggest complaints (after the initial days of fever and body aches) was that I was so incredibly short of breath with any and all activity. That certainly didn't seem to correlate with any mono symptoms I've been able to find and it was what drove me to keep looking for answers- which eventually led me to this site.

I was interested to note that you have been very hoarse. I too lost my voice around the time I got sick but never had a sore throat, or swelling or anything else that would explain my hoarseness. It took me about 4 months to get my voice back to normal this time. When I had (what I'm assuming was) a POTS flare after surgery 2 years ago, I also lost my voice for about 3-4 months. My shortness of breath has certainly gotten better the last 2 months, but I still am winded after walking upstairs on many days. Standing and talking is still a challenge. I've had many episodes, since last July, where I am lucky if I can get 2 words out in a row because I'm breathing so hard.

Don't have much in the way of suggestions for you, but I can at least relate to how hard it is to live with this particular symptom.

[Stormie74]

I had the severe shortness of breath this time last year. I was diagnosed with POTS after a TTT, and am now on Metroprolol, which helps. But I still get times when the shortness of breath comes back. For example, I was feeling really good Saturday. We had tickets to the symphony and decided to go to dinner first. Went for Chinese food, which was yummy. Then we went to the symphony and had to park a little ways away. I could hardly breathe walking to the door! Hubby kept his eyes on me and held my arm. We went inside, gave them our tickets, and sat down in the lobby so I could catch my breath. It took quite awhile, and we finally left and missed the show. I was up most of the night... couldn't sleep and felt terrible. Sunday, I slept most of the day.

[juliegee]

Hey Bev,

I think I recognize you from the Yahoo Gastroparesis Group. I'm Mack's Mom & was active there when he became very ill at 12 y/o. He's 17 y/o now and still pretty sick, but able to attend school. I've gotten so much help from the folks here & at the Gastroparesis site. Nice to "see" a familiar face!

Sorry you're dealing with this too. You are in good company here. Many here deal with CF, FM, gastroparesis(slow motility), etc. in addition to a variety of autonomic dysfunctions. If I read your post correctly, you haven't done a tilt table test yet, right? That might yield a better treatment plan, knowing exactly what type of autonomic dysfunction that you have.

I have begun to develop a little shortness of breath sporadically. Exercise could set it off or it could happen while I'm lying in bed. This sounds weird, but coughing "re-sets" things for me. It's like my HR and breathing aren't coordinating correctly. Is this anything like what you are talking about?

I also have asthma-type symptoms (but no asthma ) where my chest gets really tight. It hurts when I breathe in. I take a daily singulair, and use atrovent via nebulizer when it gets bad. Have they ruled out asthma or related conditions?

Finally, I met a woman a while back who was having some weird shortness of breath that even her cardiologist couldn't figure out. I forgot the name of what she had, but the tiny blood vessels in her heart and lungs were strangely spasming causing her symptoms. I also forget what the treatment was, but the cause was quite unexpected & treated differently than anything she had tried before.

Just a few ideas....Welcome!

Julie

[stacdliw]

Yes, I am a member of the Yahoo Gastroparesis Support Group.

Thought I would join this group too since I've having such difficulty adjusting to this shortness of breath symptom. I need all of the support I can get!!

Thanks for all of your support!