Being taken seriously by the medical community

Hello! I'm pleased to meet you all.

I'm new here, and I've been going through some pretty tough stuff for a very long time. I'm hoping that at least someone out there can identify with me (though I certainly don't wish this stuff on anyone). I also apologize if this is in the wrong place, but I wasn't sure where to post.. so here goes...

I am 31 years old, overweight (obese, but not morbid). I exercise regularly (martial arts), and I try to eat relatively well. Since childhood, I've experienced several forms of pain and other symptoms, and have gone years without a solid medical diagnosis, as my doctors have preferred to treat my symptoms rather than evaluating my problems as a whole. Understandably, I do have a lot of symptoms, and hardly any of them make sense to one another. This is problematic for me, however, because nothing is getting better... and I seem to be falling apart as I get older.

SOME of my symptoms are as follows. Please note that these come and go and I've been experiencing some of these since I was a child:

unexplained heat/itchiness/bruising in my fingers
joint pain and weakness in my wrists
swelling, tenderness, pain in my elbows
radiating pain and tightness in my forearms and upper arms
a numb spot in my shoulder blade that has evolved from tingling/itchiness, to pins and needles, to eventually completely numb
Pain in hips (which, after ignoring the last "flare up" for a few months because my doctor said I was alright, resulted in a serious accident that caused me to break my fibula and tear my ACL. I'm still recovering from both surgeries).
Numbness and tingling in the toes and the balls of both feet
Persistent and severe Hypoglycemia
Sudden facial and body hair
Extremely oily skin
My hair started turning white as a young teenager, now I have a spot where it's falling out
Low blood pressure
Heart palpitations
Digestive problems (very similar to IBS)
Irregular menses
Fatigue and "brain fog"
Loss of balance
I can sleep for 10+ hours

Some of the things I have heard over the years:

Fibromyalgia
Dysmetabolic Syndrome (Syndrome X)
Nodules on my thyroid/pollups in my uterus
An elevated Rheumatoid factor, but not indicative of Rheumatoid Arthritis
Degenerative disc disease and a loss of 80% of my L5, along with a curved spine and an inverted pelvic structure

All of the above were either treated for a very short time, or not at all...and any treatment has resulted in absolutely no improvement. Doctors tend to send me for a basic blood panel, then send me on my way after it comes back normal.

I want it to be known that I am not looking for sympathy from doctors. I don't want a handful of pills thrown at me. I want to be diagnosed...I want to treat whatever this is...and I want to get on with my life! I am at my wit's end because there always seems to be something wrong. I want to continue to practice my martial arts...I want to run with my kids and play kickball in the park...I don't want to be a medical mystery. I just want to be healthy, but I am falling apart. As it is right now, I can't touch my face with my right hand because there is something wrong with my elbow right now and it hurts to move! They want to send me for yet another MRI...to prove what, I don't know, because I've had many and they never result in anything doctors can use to help me.

I want to know...am I alone? Am I destined to be forever misunderstood and not taken seriously? I've gone to doctors with lists of my current symptoms, logs of my day-to-day activities and when the symptoms take place, and I can literally see the doctor tuning out midway through my appointments. I've tried switching doctors so many times, have seen specialists, have gone through a few dozen blood panels, MRIs, x-rays, ultrasounds. I just don't know what to do anymore. Most doctors talk to me for five minutes, and I'm sure that they already label me as a hypochondriac. But the thing is...I don't WANT this. I don't WANT to go to so many doctors...I just want to get past all of this.

Any advice?

ST,

First - welcome to the CP board of HealingWell.

I've been exactly where you are.... w/out a firm diagnosis.... and I truly can empathize w/ how frustrating it can be. I think there are others here, too, that can relate as well.

The only real thing you can do is push on - even w/ how frustarting and draining that it is - it's really the only way to get a firm diagnosis, and - thus - proper treatment.

I was in your exact shoes for a couple of years.... and I finally came upon an internist that took my case on as a "challenge".... and I was ultimately diagnosed. I had just about given up.

So - I would just keep pressing on. I would recommend trying to find a good internist.... rheumatologist.... pain management doctor, etc. Even if you have to drive a bit - it's worth it.

I would seek a doctor who's willing to look at your WHOLE health/pain. You may ultimately be sent to, say, a PM to treat your pain.... but you want a doctor that's going to look at everything to figure out what's going on w/ you.

Many of your symptoms seem to me to be related to your endocrine system (thyroid, adrenals, etc).

You also have many rheumy-related symptoms.

I'm not a medical professional but a very experienced patient! So that's the direction I would look in.

I also know - from my own situation (I gained 75+ pounds w/ a surprise twin pregnancy) that being overweight causes many symptoms. As I lost weight -- I could feel the systems in my body regulate and it did alleviate some of my symptoms. I'm not saying that's the root of your issues, by any means (and I hate when people blame EVERYTHING on being overweight).....

Anyway - keep posting.... and let us know what else you've tried, etc. Do any medications help you? Help your pain?

One last thing -- look up Dysautonomia....... here let me link a website. www.dinet.org/ That's one of my main health issues.... and you mention several symptoms that I also share... so it's worth taking a look at.

Hang in there! Take care Tina

Hi ST:

Welcome to the CP forum, I'm sorry that you've been suffering for so long. It's hard when you know there is something wrong and you can't get a Doctor to diagnosis whats wrong.

I know this from personal experience, I have RA/Lupus/Fibro. These can all be very debilitating diseases on their own. Then add the CP from them and the fatigue from being sick all the time really can make you feel bad. I know that I started having symptoms when I was 17, at age 22 my Dr mentioned I might have lupus.

It took my Dr's 13 years before diagnosing me with lupus. He started treatment then for me also but I have to say I truly think that the time I spent waiting for a diagnosis is now why I'm so sick today.

I would agree totally with Tina, you need a good Internist or Rheumy to look at your case and work up from there. I also know that due to my being on prednisone I was 100 lbs overweight. I've lost 60lbs of that and I do feel better and I can move around a lot easier these days. So losing weight would also be a thought to consider, it may help you feel better.

I sure hope that you can find someone to help you figure out your complicated history and I hope that you can let us know very soon that you found someone. That they've figured it out and that you're feeling way way better.

Hang in there and take care. Please come back and let us know how you are doing.

Hugs,
Barbara

Hi,

Welcome to the Healing Well family. You do have many symptoms of lyme disease and some of the co-infections that come with it. One of the hallmarks is variety of symptoms that wax and wane and your long history of suffering. Many people with lyme have pretty normal test results.

You might want to read the new to lyme thread at the lyme disease forum. Good luck and I wish you all the best.

Anna

 

My best friend went through an incredibly similar experience. We live in NYC, saw 30 drs here over the course of 3 years with no diagnosis for sudden onset pain. We even spent 2 months at the Mayo Cilinic in MN. She just found a dr in Harlem who is the first to really listen to her.

My advice would be to keep going. It sucks and it's expensive and far from fun, but try to have hope that you WILL find someone.

Lots of good wishes.

Hi and thanks to the both of you!

I'm exploring some options as we speak. Hope to have some answers soon!