Fibromyalgia Support Group

You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.

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nibbor 01/07/2016

Hey All,
Does anyone have a lot of trouble breathing aka SOB (shortness of breath)? I've had asthma for years but it rarely acted up. Usually only got bad around mold, mildew, dust, my cat (all things I'm allergic to). Not anyone = fun times. Snort.

I got my intrathecal pain pump "installed" Dec 11, 2013 at 1pm for my CP, chronic pancreatitis (not that I'm keeping track, of course!). Since then, I haven't been able to breath right.

I also have Fibromyalgia and a bunch of other fun stuff like visceral pain syndrome (yes, that's a REAL thing I guess!).

I think my SOB is due to the placement of said pump, with a 4.5in diameter and 1.5in depth. The doctor put it in left front abdomen, way to the side. It's WEDGED between my ribs and my hip bone. Picture a 1/2 used roll of duct tape. Heck, go get one! Then try to push it into that space. I'm 5'7" and medium boned and I can barely stand the pain and SOB! Stupid design for sure.

I'd love to hear feedback. In my dark thoughts I fear cancer as it "runs strong in my family" (Star Wars: Return of the Jedi = gotta love the classics!). Only Luke said "the force" not cancer. Obviously, eh?

Thank you and hope this brand new day of 7Jan16 brings you all some relief, joy or just distraction. Take care, Robbin aka Nibbor aka Nibs

Bobbii 01/07/2016

Hi, Robbin. Wow that's a lot going on! I have asthma that I treat daily. It will act up out of the blue. I've been tested and nothing shows up. Yet, shortness of breath is obvious. Perhaps the device is causing you anxiety that is manifesting as the SOB. I have severe rib pain and having placement where you do would be horrible. I hope you can find relief! Fibro alone is hard to live with, much less the complications you have! Praying for relief for you!

jcpmoore 01/07/2016

Hi Robbin! Sorry for what you're going through with this. I started having SOB a few months ago out of the blue. I have had asthma for years and was already on a daily preventive inhaler and a rescue inhaler--neither of which was helping with this. Doc put me on singulair to replace my allergy med b/c it's an allergy and asthma med. It's helped a lot (as did slowing down caffeine).

I would recommend that you call the doc and let them know what's going on. They should be able to do something to help, be it allergy med or moving the pump. I hope you get some relief soon!

PeaceN2You 01/07/2016

Did you mistype the date, or have you really been short of breath for over two years and not seen a doctor about it?

Whichever is the case, please see your doctor and tell him/her about your SOB - it's a serious symptom that should not be ignored.

bluesun 01/07/2016

So much you got going on there. So have you seen a pulmonologist yet?

I have the same problem as Bobbii.... have shortness of breath daily (walking, going up steps, around smoke, etc) but when they give me the asthma test I "pass". I tried to tell them they aren't giving me the right test. They have to put me on a treadmill, or put smoke around me, or do something to trigger it. If I'm just sitting in a sterilized hospital room in a chair, no asthma will show, dummies!

marsharebel 01/09/2016

This has been a very annoying symptom for the last, yes, couple years. I have complained and complained about it. For me, it can come on for really no reason at all. I can be sitting on the sofa and all of a sudden, I am gasping for breath. I've kind of gotten used to it, but I will continue to mention it when I go for check-ups.

Allergies here, too. The asthma always gets worse when it's cold. I'm not sure if it just the cold air, or the fact that there are so many people in my area who use wood for heat. No matter how well sealed up my house is, it can still get in. I wear a mask outside and I don't care anymore if it looks like I'm an ancient mobster/moll.

marioncooper1 01/09/2016

I didn't know they had a name for this. I have had it off and on since at least the 1980's. Every time I mentioned it to my dr, she sent me down for an EKG, which always indicated that it was not a heart attack. I just quit telling her.

I hope you dr gets to the bottom of this.

twinmomab 01/09/2016

I have this problem too. I had to reach my insurance deductible and I paid around $800 to have a lung test done in the hospital, all for nothing. I knew they wouldn't find anything. They never do! I can't even sing to my children, I will get that out of breath, and I come from a background of working out and have always ran and workout extensively. I don't understand why they don't test me by physically exerting me to see how my body responds; both out of breath and muscle weakness and exhaustion.

fibrolizzy 01/09/2016

I've been having SOB, too. I went to my GP, who referred me to a cardiologist. That appointment isn't until February. My GP said if he doesn't find anything, then he'll send me to a pulmonologist. Maybe something will turn up. It sure is frustrating.

twinmomab 01/09/2016

I wondered if I should see a cardiologist, but I hate to ask for more test, it's a new year and a new deductible. That test was going to cost me $900 back when I had Cigna. I'm not sure if it's the same for BCBS.

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