Does It Always Take Years To Diagnose Fybro? | MyFibroTeam

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Does It Always Take Years To Diagnose Fybro?
A MyFibroTeam Member asked a question 💭

I am currently awaiting to see a new doctor for my chronic pain that I believe to be fybro, and have had for about 8 years now and I know it's very hard to diagnose, how long did it take you to get diagnosed? Anything will help I'm new to this and would love to hear people's inputs! I'm not ready for this even longer road ahead of me!

posted September 26, 2015
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A MyFibroTeam Member

Took a decade for me, but I still have doubters 30 years later. Some doctors just don't get it and probably never will.

Or they are convinced that whatever they specialize in is what you are complaining of and they'll be happy to load you up on major drugs with serious side affects that just cause you more pain.

My rheumy just did this to me. She's sure I don't have fibro, but I have psoriatic arthritis based on one nail pit on one nail. I've tried the drugs, they nearly killed me. Now she's mad that I didn't "tough it out for six months" to see the benefits.

I'm on the very edge and I refuse to have endless pain just to satisfy an "educated doctor" insisting that I "just trust me". I'm moving on, but not before she's created medical records that discredits my fibromyalgia diagnosis that took years to be diagnosed.

Rant over. Many of us are frustrated. Good luck to you.

Walk away from those that think it's in your head or that you're a hypochondriac.

posted September 26, 2015
A MyFibroTeam Member

Met with GI specialist today regarding IBS. Here is what he told me. IBS, chronic headache , insomnia, fibromyalgia, ,hyperactive bladder, OCD, personality changes are all classified as Hypersympathetic Syndrome. Syndrome causes increases in adrenaline (cholinergic). IBS=abdominal pain mainly in colon. Prescribed Hyosciamine. A little pill to be taken 1-2 tabs every 4 hours as needed for the cramping, gnawing, grating , "electric" pain in lower abdominal/pelvis. Advises following low FODMAP diet. Eliminate Fructose, Lactose, Fructans, Galactans, and Polyols. Need to reduce amount of foods that can ferment in bowels like fruit juices, certain fruits, fructose, honey, lactose like milk from animals, soft cheeses like ricotta, cottage, mascarpone. Galactans like baked beans, chickpeas, kidney beans, lentils. Polyols like apples, apricots, blackberry, nectarines, plums, prune, watermelon, bell pepper, mushroom, sweet corn and all sweetners that end in -ol like sorbitol, mannitol , xylitol.

Avoid stimulating antidepressants like Zoloft and instead use relaxing (anti cholinergic) antidepressants like and cymbalta.

Stop trying to diagnos ourselves. For medical information go to :

www.pubmed.gov

This is a non commercial site. I explained to him that we go to other sites trying to get information because physicians don't give us enough information. We look for alternative medicines in desperation to stop pain and get advice from support groups because we see specialist only 15 minutes at a time every 2-3 months. He said in regards to supplements St John's Wort is only one valid for mood enhancer. SAM-e not proven effective for mood booster. He said "fibro fog " should be called loss of concentration.

After 2 months of loosing work time and floundering around trying to get answers from physicians I finally found one doctor that I feel has a clue to my treatment plan. I will see rheumatologist in a few days. Will post what he says. Hope this helps.

posted October 10, 2015 (edited)
A MyFibroTeam Member

I've been telling my primary care doctor for years she recently reffered me to a rheumotoligist who I see the beginning of October so I'm hoping for a good doc! Thank you for all the support!

posted September 26, 2015
A MyFibroTeam Member

Sorry you are having such a hard time with anxiety, I have been there and it is not fun. Are you getting treated for anxiety & depression?

posted September 26, 2015
A MyFibroTeam Member

@A MyFibroTeam Member I am a little confused about what the Dr. said about anti cholinergic antidepressants, as they are two different kind of medications. They don't seem to relate to one another. Also, I believe that if you are taking an antidepressant already, St. John's Wort can interact with it so we should take one or the other and not combine the two.

posted October 11, 2015

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