Not Yet Diagnosed, In Need of Opinions and Advice

Hiya all,

I am new to the forums and have yet to be diagnosed. I do believe that this might be a serious possibility and am looking for advice and opinions as I start this process. Sorry if this is long but I will start with a little bit of history.

I have always had "poor" health. When I was about 4 I had surgery for kidney reflux. I would have random fainting spells which we never found a cause for, despite multiple MRI's and CT scans. I've suffered from chronic migraines from the time I was about 8 (possibly even younger because my memories of taking medications at that age seemed normal and I remember not understanding why the workers in the office at school looked shocked when I came to take extra strength Tylenol in the 3rd grade). My mother also had migraines, my sister has had a few (not nearly as much as our mother or myself), and now her 8 year old daughter has been diagnosed with them as well. Sickness wise I have had a lot of sinus problems (my parents did smoke in the house/car a lot) and when I was older I had a CT scan done of my sinuses to see why I continued to have so many sinus problems (daily phlegm/mucous, sudden trouble breathing due to sudden congestion) and it came back clear and the doctors were surprised that I would be having the problems I was. When I was 14 I started seeing a neurologist for my migraines and he diagnosed it as being caused by sleep deprivation. Specific foods didn't trigger them, it was seemingly random and frequent. The only trigger we have actually found is heat. I am extremely heat sensitive. There are times I go outside in summer (which can get somewhere between 95-115 with the humidity on an average day here) and can simply stand there talking to someone for 5-10 min and get some of the worst migraines. Exercise overheats me quickly too, even in rooms with AC so it makes it hard to lose weight. My neurologist put me on a variety of antidepressants (I have been on Cymbalta, Celexa, Effexor, Paxil/Paxil CR, Zoloft, Depakote, Tramadol, and Lamictal) none of which helped much and some made me really sick (Effexor, celexa, cymbalta, and depakote were the worst). He also put me on medicines for sleep ( trazadone, restoril, ambien, lunesta and amitriptyline). The amitriptyline helped me sleep but it still made me groggy. I was tired of the fog, of never feeling rested, of relying on pills to sleep and scared that I would never be able to sleep without pills so I started weaning off of them. When I was 18 my neurologist left and a new one came. She had no sympathy or even seemed willing to help me. I ended up refusing to see her (this area only had one neurologist at the time and my parents didn't drive in VA, the closest bigger city area) then was dropped from my parents insurance so I never did see a neurologist again.

Also at 14 we found out I had PCOS as well. Major cramping and bleeding led to me being anemic and I was extremely overweight. Dealing with all the pain made me really depressed as well, high school was truly a nightmare. After high school I attempted college but dropped out in the second semester. As a result I lost insurance through my parents. I kept struggling with chronic pain and fatigue for a few years. In 2003 I moved to Charlotte and got benefits through my job. During this time I actually had visited a doctor who suggested I had fibro. I had never heard the term before and she didn't explain it so it sounded terrifying. She asked me about pressure points and I recall it only being four or five places she mentioned (later research I found shows there were more than what she tested). I had MRI's and CT scans during the year and a half I was in Charlotte testing for MS and other issues that could be causing the fatigue, pain and migraines. Everything was clear. I was concerned about losing weight (between the fatigue, pain, meds and PCOS it is a very difficult thing to do) so my thyroid was tested multiple times. Again, nothing wrong there.

Since then the PCOS still persists, my migraines are worse (I have also been diagnosed with chronic tension headaches as well which is not a shocker), and I have been diagnosed with Bipolar and Anxiety. When I googled the pressure points I found that they matched mine (except for the elbows and gluteal area). My tension headaches never go away (I believe that's part of my sleep problem) and the source of tension are the points of the occipital area. At night especially I tend to get so hot when I sleep that even with the AC set to 74 and two fans set to high and blowing straight on me, I wake up covered in sweat. When I wake up I feel like I have been cramped into a box and am sore. It takes a few minutes of slow stretching to feel like I can move. I go through periods of time where I wake up with severe leg cramps that take my breath away. I tend to feel dizzy and nauseous most of the time and as time goes by I am having more and more difficulty focusing. I have always been a great multitasker and able to listen to music, carry on a convo and handle multiple windows/chats on the computer all at once. Lately I have to stop a conversation in order to send a text or to read quick instructions (such as cooking dinner). I am a full time student and studying is almost impossible. I try to read and cant get my brain to focus enough to retain it (problems I never had growing up and have progressively gotten bad). My doctor put me on adderall (I am out of it right now though) which helped some but didn't get rid of the fog. The sinus issues still persist. I am on seroquel 200mg for the bipolar which helps me sleep but I still feel fatigued when I get up. I have always had issues with my stomach (constipation, bloating, abdominal pain, gas) but never actually seen a stomach doctor, and I have had issues with acid reflux. I also tend to grind my teeth and will realize I am locking my jaw and clenching my teeth for no reason, and then will try to correct it. I have poor posture but it hurts to try to fix it. My blood pressure has always been towards the lower edges of normal and my cholesterol is good as of my last screening. I am pretty sure this all leads to fibro but I have concerns about getting diagnosed. I have no insurance as my "job" is watching my nieces for my sister and of course does not provide insurance. I haven't had insurance in over 2 years now so I can't afford a lot of testing (such as having MRI's and CT scans done again). Also, my doctor is a family practice and we are a small area. Since I have no insurance I am worried he will not be able to make a firm diagnosis and will refer me elsewhere, somewhere I will not be able to afford. However, he does know my history and knows I am not a junkie and I think he knows that it is not just "all in my head." Would a new MRI and/or CT be necessary with my history (in your experiences)? Also, most of the medications I have seen online for treatments (such as amitriptyline and cymbalta) have been tried before with no noticeable relief. What other options would be out there? The pain is starting to get more than I can take and making my current depression even worse. If I was able to get a diagnosis from my doctor, are there any organizations that can help uninsured patients with fibro be treated or pharmaceutical programs that have patient assistance (Astra-Zeneca makes Seroquel and they have the AZ&Me program which allows me to get my seroquel for free right now)?What should I expect in the diagnosing process?

Thank you and sorry if that is too long for some, I just wanted to give a history and explain somewhat why I think this fits me.