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Randy

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PA

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Posts (9)

Mon, Sep 23 5:12am · Fibromyalgia and rash pain in Chronic Pain

Hi everyone I was out at Mayo in February a
For massive breathing issues and widespread body pain,skin sensitivities but mostly I could not breathe and was exhausted. I was diagnosed with silent reflux, Gerds, fibromyalgia, an immunoglobulin g deficiency. My roseaca and eczema which were mild on my face and arms my whole life seem to have exploded and were red itchy and tingly on my face, chest and arms, made worse by the sun. Thanks, fibromyalgia and thanks to all my docs on east coast for leaving me sick and undiagnosed for almost 2 years. Well all water under the bridge now, on the road to recovery but 2 weeks ago came down with all over red body rash, very red, not raised, very tingly and painful. Was on prednisone, topical steroids, massive antihistamines, and nothing in s helping. Antihistamines made it slightly less red but not less painful. Drs here are stumped. Any ideas??? Trying to figure out if this is my personal version of a fibromyalgia flare, and if so how to treat it?

Mon, Sep 23 4:10am · Strange Rash in Skin Health

Thanks for the reply. Some itch but mostly tingly and painful. The itch is not overwhelming but I am going to look up Grovers right now. The only other clue I have that I was not at all alarmed about was about 4 weeks ago my kidney level creatin levels were elevated to 1.44. Dr wanted to repeat them with and was planning to but could not while on steroids. Dr was not alarmed said I could have just been dehydrated that day. I will look up Grovers

Sun, Sep 22 7:27pm · Strange Rash in Skin Health

Hi everyone, I was diagnosed in February at Mayo with Fibromyalgia and for me it definitely affects my skin. I have had mild roseacea and eczema my whole life but now it is extreme. My face and upper torso particularly go very red and hot and tingly randomly during the day, sometimes when I talk and great sun sensitivity.

Well over 2 weeks ago out of the blue I got an all over body rash primarily on the front of my body, bright red, not raised, but very painful. It will not go away. Docs in philly have had me on prednisone, topical steroids, antihistamines, etc. nothing is working and it is not going away. I am absolutely frustrated. I am wondering if this could be a fibromyalgia flare??? Anyone ever had anything like this? Absolutely nothing
has changed in my diet, household products or routine. I am ready to throw in the towel locally and fly back to Rochester…

Tue, May 21 12:23pm · Months of Chest Pain - Please help in Digestive Health

I have no idea at all if this is going to apply to you but here goes. I have a ton of breathing issues, tightness in my chest, feeling a lack of air, constant bronchitis and infections, and losing difficulty talking. The more I talked the more I lost my voice. I was misdiagnosed with asthma for well over a year, and no one could figure out what I had, as I just got sicker and sicker…I finally went to the Mayo Clinic in Rochester this past winter and got properly diagnosed. I had laryngopharyngeal reflux-silent reflux, which means acid travels up your esophagus and makes it difficult to breathe, sore throat, hoarseness, mucus in throat, etc. I had personally a feeling of pressure in my chest. I don't know if this is you at all, but I can tell you, multiple specialists missed this and almost 2 years of being untreated left me really ill, and caused a host of other issues. I hope you figure things out and feel better soon.

Tue, May 21 9:06am · LPR and Laryngeal spasm in Ear, Nose & Throat (ENT)

Well here goes, in December of 2017 I got bad bronchitis and suddenly felt like I was gasping for air. For months prior I had been getting multiple upper respiratory and sinus infections and feeling fatigued. But everything changed on 12/17. I could not breathe and the fatigue went through the roof. There began my journey throughout the last year + to more specialists that I can count, being put on multiple asthma meds(I do not have asthma) etc, you get the picture. I am overweight and have lost almost 40 pounds since this started with no improvement. Not one doctor back in Philadelphia mentioned anything to me about Laryngopharyngeal Reflux. Fast forward to the past 2 weeks and my visit to the Mayo Clinic. Diagnosed with both Laryngopharyngeal Reflux abd Gerds and frankly I am scared. I have an endoscopy tomorrow and have been told from testing already done that I have a small hiatal hernia and something wrong with swallowing. Has anyone had symptoms that initially manifested in shortness of breath and hoarseness first? Anyone have every Dr miss it?

Sun, Mar 3 5:17am · Large amounts of mucus in throat in Digestive Health

Hi, I am new to this group as well as I have been recently diagnosed. I am not a medical professional, but I was diagnosed with Laryngopharyngeal Reflux which I probably had for over a year, was misdiagnosed and it was untreated. It is silent reflux and does not have outward Gerd symptoms. So mine started with massive shortness of breath, loss of voice, cough and fatigue from the constant shortness of breath. Then excess mucus in my throat. This went on for 11 months before I had any kind of burning sensation in my chest- or any typical acid reflux Gerd type symptoms. So I was at a pulmonologist who missed it for the longest time. I share this with you because mine ultimately led to the LPR and GERD and because it was not addressed properly for so long I have inflammations up and down my esophagus and the top of my stomach.

Please seek a second opinion. I kept pushing all my doctors in Philadelphia ( they did not figure it out) until I had to seek care at the Mayo Clinic in Rochester. Advocating for myself and educating myself was the best decision I made.

Sat, Feb 9 9:43am · short of breath, lose voice, massive fatigue and skin rash/photosen in Lung Health

Yesterday marked the end of my second week at the Clinic with a confirmed diagnosis. Fortunately for me there is nothing wrong with my lungs or heart. However, The pulmonologist here did figure out rather quickly that I had severe Laryngopharyngeal Reflux- so Reflux that is silent and pushes acid gases and pepsin gases into your lungs and esophagus causing-shortness of breath, coughing, hoarseness and more hoarseness the more you talk. This was all confirmed by some not so pleasant testing. It was undiagnosed for so long that I know have the plain old regular reflux as well, so Gerds as well. Thrown into the bundle was a fibromyalgia for the full body aches and overwhelming fatigue. Probably all tied to this prolonged illness. I share this in case anyone is on here with similar breathing issues as mine, with similar frustrations. It may be worth a GI consult!

Mon, Jan 28 6:52am · short of breath, lose voice, massive fatigue and skin rash/photosen in Lung Health

Thanks for replying. So they had no idea what to do for me and at first suspected was adult onset asthma. Breo Elipta 200 inhaler, Spiriva inhaler, a rescue pro air inhaler and nebulizer with albuteral etc. None of the rescue inhalers have ever rescued me, and the nebulizer never worked. They then put me on Nucala injections. In between all this I passed a methacoline challenge, but they have not taken me off these meds. I guess they were hoping for some improvement under the theory that maybe you could pass a challenge but still have asthma? Anyway, as I was amassing all records for this visit, I see that in all testing I never have a change in breathing pre or post nebulizer treatments, etc. However my spriometry which is done at least monthly is never stable and indicates breathing issues. So I suspect I am on medicines that are not helping me (although the local dr's contention is that they won't hurt me), and certainly my shortness of breath is not improved nor is my fatigue.