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Living With Fibromyalgia - Online Support Group

My Doctor Confused Me. Opinions PlZ

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.

Bless your heart @WinnieBlue! I am so sorry for the suffering you’ve endured, especially starting at such a young age. The thing I find is, whatever hurts me the most, is usually my main concern for the day - It kind of “out-shadows” the other pain, & drives me crazy, until I wake up with a different problem (or pain) the next day, that takes center stage.
You are really going through a lot of things at once. My best guess is that your doctor does believe you have fibromyalgia, but wishes to continue tests because of your multiple issues. Maybe he is exhausting all possibilities - You can definitely have more than one diagnosis. Many, here on the board (including myself), suffer from multiple conditions.
If your doctor is being extra vigilant in getting a complete diagnosis, that is pretty awesome, and more than some would do.
These are just my thoughts, for what it is worth. Welcome to our group - We are sorry you are suffering but glad that you found us.

Welcome WinnieBlue to the forum I agree with AussieMom your doctor is fully checking everything out before giving a final diagnosis sorry you are suffering so much at the moment if you want help with anything you are uncertain of come on and ask usually someone can help. Annette. Moderator.

It definitely sounds like Fibro and Chronic Fatigue. It’s often hard for people to hear that it’s Fibro because over time it can become worse. I too have a problem with dizziness. I’ve been complaining since I was 18! Pots is very hard to diagnose and many of your symptoms sound like that also. Does your blood pressure run low? Mine was 85/45 the other night and I passed out. I am starting to have the same problem with pain in my legs and feet. I have to walk everywhere due to not having a car and when I get home, my feet hurt extremely bad. Be careful on the prescriptions they want to prescribe for the Fibro because some either don’t work or they cause extremely horrible side effects. Has the doctor by any chance given you Prednisone for a short period of time to see how it affects your pain? There is also a type of arthritis that they normally don’t test for, that will ALSO cause a lot of your symptoms. It sounds like he is willing to really get to the bottom of your symptoms so don’t let him give up on you. Ask him about the arthritis test also. And make sure they do blood work on you often. Have you ever had Mononucleosis? I had it as a teen and it has reared its ugly head after all these years and I now have the Epstein Barr virus. This can also cause some of your symptoms. It never hurts to mention these possibilities with your doctor. Keep us updated please?

Fibro is sometimes easy to diagnose because all your tests come back normal. However, there may be some underlying disease that is discovered, so always say yes to the blood tests. Tell the doctor you have no car and how bad your feet hurt. Sometimes it is little things (WE call it little incidents) that give doctors a breakthrough idea and diagnosis. I make a written list of odd little feelings and happenings because when i go to doc so seldom i cannot remember. He appreciates the list. it helps him know what track to be on. Hang in there. We all understand.