My Doctor Confused Me About Diagnosis-1st Post

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Jul 1, 2020
This is my first post so I'll just give a bit of a background. If you want to get straight to my question you can skip to the end. I'll even put it in a different font so you can find it! I won't mind!

In my late childhood and early teens I began having symptoms. I was so tired I could hardly ever get out of bed. I had no physical stamina. I was diagnosed with IBS after dealing with nausea and horrible digestion. My symptoms grew so severe in my late teens early twenties that it wrecked my entire life and rendered me bed ridden. One of the biggest reasons it wrecked me so bad is I felt so horrible but all my doctors told me I was fine and it was all in my head. They kept diagnosing me with mental illness but if it wasn't for the physical problems I wouldn't have been depressed or anxious.

I was drop dead tired all the time, I hurt all over and constantly felt like I was coming down with the flu. In my mid-twenties I started working but all my jobs would leave me so physically and mentally exhausted I would have breakdowns at work and would lose my job. I was losing a ton of weight and was dangerously underweight at a few points in my life because I had no appetite and my digestion was so horrible.

I am twenty-eight now and about two years ago my symptoms grew worse and I developed new symptoms. The widespread pain became worse. I hurt all over like someone beat me with a bat. I began having dizziness and balance issues. The job I had when I was standing I had to keep grip of the counter because I constantly felt like I was going to fall over and everything would sway but it wasn't a vertigo sort of spinning, just a constant swaying unbalanced feeling. Then during my evening shifts I would become so tired that I would go into panic attacks because my mind would literally start to shut down and i would begin falling asleep in my chair. My eyes blurred out and everything around me became really hazy. This was not the panic, but what would make me panic because I get anxious when Im very tired. When I walked it was just everything was foggy and fuzzy and going black around me. Then I noticed that if i stood too long in one place, blood would pool in my feet and my whole body would give out. My bowels would go lose, I'd get extremely nauseas and I'd nearly faint.

I have severe double curve scoliosis so I begin looking into nerve problems but they found nothing.
Over the past ten years I have had all the blood tests done besides autoimmune disease but my doctor has assured me I don't have proper symptoms to diagnose lupus or any other autoimmune disease. I did have an MRI to check for MS and was clear

I've had my thyroid checked, my heart fully worked up, my lungs checked, my liver, pancreas and gallbladder checked. I've had full blood tests and just bounced around from specialist to specialist since I was fourteen. They always tell me 'You're tests are perfectly healthy, you're a healthy young woman, you should be fine"

I finally found a doctor last winter that really listened to me. My blood tests and vitamins are fine except for low D3 but my symptoms are too severe and don't match D3. Every other tests, MRI, heart tests, stress tests, liver, pancreas, thyroid, etc. Its all normal. The only abnormality that was found is that I have both bradycardia tachycardia and my heart rate will go from too low and double to too high when I stand up. They considered POTS but my blood pressure remains normal and they did a ten minute standing test and tested my heart rate and pressure lying, sitting and standing and found it wasn't consistent with POTS. So my doctor says it sounds like its a miscommunication with my automatic nervous system which is nearly impossible to diagnose with testing.

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 :( :( :(
Hi WinnieBlue, No one here can tell you if you should accept the diagnosis or not; that is only for you and your doctor to decide.
From what you describe, it does sound like Fibro to me, and apparently it sounds like that to your doctor as well.

I am sure your doctor didn't want to confuse you. I can't say why he said the things he did, but here's my guess:

fibroyalgia is something that is diagnosed by eliminating other things, and by the pressure points tests and so on. But it is not a precise diagnosis at all. the symptoms range so incredibly widely among different people that I for one do not believe it is a disease at all, but an umbrella term that doctors use and what it really means is "we don't know what the heck is wrong with you, but something is."

I think when more is understood about fibro it will end up being broken down in to several different things, but that's just my opinion. Your doctor is probably just wanting to try everything in order to be sure of what is going on, IF he can be sure. Having a Fibro diagnosis doesn't do anything for you except let you know you are not crazy (which is worth something) and allow you to get medication and insurance will cover stuff and so on. Since there's no one treatment that works for everyone, or even most people who have fibro, and there's no cure, the diagnosis has only very limited usefulness.

It sounds to me as if you have a good doctor. Hang in there with him and do the tests. It doesn't sound to me as if you have any problem with your doctor, just that you are eager to know what is wrong with you. I got diagnosed with Fibro years ago and I would still like to know what is really wrong with my body, because knowing I have fibro tells me nothing!

This is a good forum, though, with people who want to help. Stick around and at the least you will get some support for what you go through.
It could be Fibromyalgia but don't accept it just because your dr says so. I was diagnosed with it last fall but did not accept fully as there were some things that didn't fit exactly. I have recently discovered that I have Lyme disease and the symptoms I have also match partially with this and several other illnesses. A Fibro diagnosis is better than nothing and it gives you something to work with. I have heard that "its all in your head" before. Don't accept that from anyone.
I was really interested in your "background info." As I read it, I could relate. Over many years, I'd decided on my own that my vagus nerve had to be somehow involved in my issues, as they were so diverse. A few years ago, after being diagnosed with FM, I researched whether there was a connection between the vagus nerve and FM - and, unsurprisingly, there is. Right down to the heart arrhythmias, which, like you, I also experienced.

I agree with sunkakola that it sounds like you have a good doctor. To a layperson with any experience with FM, your description does seem to fit. And since there's no black and white test for FM, I think your doctor is saying that it sounds as if it's FM, but if he's suggesting further examinations at the Cleveland Clinic, it could simply be because he's playing it extra safe and would like confirmation of his dx. FM isn't going to kill you or cause you life-threatening issues, but he just wants to make sure that nothing ELSE is a possibility.

In other words, even though FM is a diagnosis reached by ruling things out, he wants to make sure everything else that causes your many symptoms is also ruled out. That ruling out process of disorders with similar symptoms is known as a differential diagnosis. Your doctor is being thorough to have developed a DD. He's a keeper.
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