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Help with a complicated case and no diagnosis after 4 years
2 Replies
valby - January 27

Hi All,
I will preface this with an apology for such a long post but I really value your insight!

In about 2005 I suddenly started to get a feeling like someone was sitting on my chest or that I was breathing in vinegar fumes. Either way it made me feel like I couldn't breath properly. I then started getting rib pains and gnawing type pains that made me wake up in the night. They thought I had a gall bladder prob. After an ultrasound/HIDA scan, CT scan/endoscopy/colonscopy they couldn't find anything. Only thing that has come back is once my Lipase was elevated (but not on subsequent attacks) and my CRP was very elevated at times, like I was having a severe allergic reaction. I alos developed a heart murmur and cardiac tests showed no reason.

But I kept having attacks which seemed to start with the rib pain and reflux symptoms and ended with severe nausea and vomiting. One attack my knees stiffened up so much I could hardly get out of bed. The nausea is debilitating...but I noticed I was mainly vomiting acid. Attacks would last about a week with vomiting only first day but fatigue and nausea lasting for days.

I have other odd pains like tingling in my left arm, sore hips and knees (during the attacks, although knee pain comes and goes) and a weird itching feeling under my left rib (always same spot) and a sensation like my back is burning and so is my right leg. Once I checked to see if I was standing next to a heater when I was in the shopping mall. I also (since I was a child) get terrible pains in my thighs like a cramping kind of pain which is relentless and only helped by sleep. Seems to come on when I am tired.

But at end of 2007 I stopped all my meds which at the time was OCP (Yasmin).

In 2008 I was symptom free until we discovered I had an overactive gall bladder and had it removed because I reacted to the neomercazole with hives and massive bruises.

After the surgery my rosacea flared up badly. And I discovered that the above symptoms are triggered by taking what it now seems like any drugs. I should also say that the original attacks began after I had been on minocycline along with the pill for about a year.

I tried taking doxycycline, spirolacatlone, azithromycin and low dose accutane. I get the same results from all--starting with rib pain and ending with nausea and just today vomited up acid (after taking 20mg accutane Fri, Sun and Mon). I did run out of nexium yesterday so didn't take before bed and I wonder if that is why I felt so nauseas and vomited today?? When I went to bed I felt ok.

So I am severely frustrated because I need to calm down my rosacea flare and anything I take is making me feel horrible.

Do you think this is fibro with GERD and IBS?

Has anyone else developed this hypersensitivity to drugs? What do you do if you need the drugs?

I am seeing an immunologist and allergy specialist on Friday. Anything I should ask?


valby - January 27

Sorry not sure how to edit that should read "overactive thyroid".


Fantod - January 28

Hello Valby - I am extremely sensitive to drugs and OTC medication as well. Fibromyalgia (FMS) can cause skin problems as well as chemical sensitivities. I treat all medication like cynanide and start with the smallest dose available to see what will happen. I have also had medications reformulated to smaller doses by my local compound pharmacy. These pharmacies are located all over and there is likely at least one in your area. I use some homeopathic medication and standard pharmaceuticals. I have a long list of things I can't take which I keep on my computer. Everytime I go to see a doctor, I print it out.

There is a light treatment for Rosacea which is called photodynamic therapy. It is supposed to be very effective for treating rosacea. Your dermatologist should have offered this option.

You may have FMS but you need to see a rheumotologist for a firm diagnosis. To find a fibro-friendly rheumy in your area, go to the National Fibromyalgia Association website and ask them for help.

You should be very blunt with the immunologist and the allergy specialist about your situation. You can also ask them if there is a possibility that it might be FMS. But, in the end you should still see a rheumotologist.

Take care and let us know how you are doing.



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