This is my first post so let me run down my symptoms and diagnosea experience real quick.
My symptoms are extreme fatigue. Generalized pain. Flu like pain, exhaustion and aching, heat and cold intolerance, interolance to smells light and sound. IBS, dizziness, balance problems, near fainting when standing, all over itching, numbness, cold spots and tingling, mental confusion, memory problems and brain fog and depression. I also have arythmia.
Ive been symptomatic since I was 17 and growing worse. My symptoms wax and wane, come and go but over the years when i do get flares they are worse than before. Ive had my thyroid, brain, heart, lungs, digestive system, blood and vitamins checked multiple times with healthy results besides my arythmia. The docs have tested for and ruled out thyroid disease, MS, and POTS among the other tests. What my doc still wants to test but he told me he thinks itd be useless cuz i dont match the symptoms is lupus and lyme plus some really rare diseases.
So this is where my doctor has confused me…
I went in yesterday because the pain, tingling and numbness has gotten so bad in my feet it’s hard for me to stand and walk and I have been limping. To top that, my ankle and feet muscles feel very weak so when I go from crouching to standing, I don’t have the strength to stand myself up. It comes and goes and is not consistently like this. I told my doc its like I am suddenly aware at how hard the ground and floor is. It just hurts to walk. I have to sleep at night with my feet propped up on a high pillow because they feel so swollen and painful and i have RLS which only stops if I prop up my feet. I have also had worsening in my brain fog, ability to concentrate and my memory has been slipping severely.
My doc and I were going over my symptoms again, all the tests that I have had done and I brought up the possibility of fibromyalgia. This idea came up from the fact my great grandma was diagnosed with it and my mother has told me multiple times that my symptoms fit. I don’t usually like to bring up conditions to my doc cuz I’m always afraid of self diagnosing, but he talked to me about fibro and he said all my symptoms fit. He fully believes fibro is a real thing. He did a tender point test on me and I failed miserably. It hurt so bad that I was doubling over and shouting for him to stop. He said in places where fibro patients usually hurt, I hurt and where we are usually numb, i was numb so I fit the fibro tender point test. He also said I was symmetrical in my pain which is common with fibro and less common with other pain problems. Then this was his exact words
“I think you might be right. You fit fibro and I think that might be it” But he never really said “yes you have fibro, this is your diagnosis.” He also went on to talk to me about fibro medications and even offered to prescribe me medicine for it, yet he said he wanted to continue to do this other tests and spoke as though we were still figuring out the mystery saying things like “We’ll figure out whats wrong with you” “We’ll find a diagnosis don’t worry.” But yet he gives me medicine for fibro and says I fit the description…
I thought I would wait for my summary to post on my eChart and when I read it, it confused me more. He didn’t list “fibromyalgia” in my conditions list. He listed fatigue as a symptom with the note “Can be intense with generalized pain. She has multiple tender points consistent with fibromyalgia. Putting her on trial for med for fibromyalgia”
and then he put the symptom “myalgia” with the note “Exam suggestive of fibromyalgia with tender points, fatigue, and post activity exhaustion/pain”
So you can see why I’m really confused. In the same note he’s talking about sending me to Cleveland Clinic to get a diagnosis…yet sort of diagnosed me with fibromyalgia? I don’t know. Have any of you had this problem and what do I do? I am ready to accept that I have it so I can move on and begin to deal with it. I need something concrete, I’m just that kind of person but I feel like he isn’t going to give me a concrete answer. I believe that I have fibromyalgia but my concrete answer is needed for me to validate to other people so they understand what I’m going through. It seems like no one ever believes you have something unless a doctor firmly diagnosed you with it. Or else they just think you’re self diagnosing or you’re a hypochondriac. Should I be officially accepting fibro as my diagnosis? I’m so confused.