I'm currently working with several different doctors, so I'll run through what's going on with each one.
Hematologist: Along with the genetic clotting disorder Factor V Leiden, I previously had low protein S, which can also increase risk of clotting. In my bloodwork this year my protein S was back within normal range, so that's exciting. I take a baby aspirin daily, but otherwise don't really need to do anything with this at this point (I could need blood thinners in the future for things like surgery or pregnancy). Our major concern last year was getting me off of the birth control patch (which I was using to help with my extremely painful menstrual cramps due to endometriosis) because any kind of hormonal treatment can also increase the risk of clotting, which brings me to...
Gynecologist: In Decemeber 2010 I had an abdominal laparoscopy in order to ablate any endometrial growths we found. They found two, but unfortunately it didn't do very much to relieve the pain. I was given Percocet to take while having cramps (a step up from the Vicodin that I was using previously) and faced with deciding how to proceed from there, since taking Percocet several days a month makes it difficult to work (needing to regularly miss three days of work a month is not very appealing to employers). At the moment I am on Lupron-Depot, which are monthly shots that essentially put my body into menopause, thereby helping with the pain by largely eliminating periods. This is only a stop-gap treatment, however, that can only be used for 6-12 months because it can cause significant loss in bone density (which can be recovered after ceasing treatment). I'm about to get my third shot, which means I am trying to figure out what to do after my time with Lupron-Depot is up. It looks like my options are both surgical: either a uteral sacral nerve ablation or a hysterectomy. I'm not excited about either of those options, but I fortunately have a bit of a reprieve from the pain during which I can research and get medical opinions to help me make a decision.
Oral Surgeon: I have TMJ (lock-jaw) which we were working on getting a splint made for to help relieve/correct it, but that ended up not happening for now. However, my symptoms have lessened (I was having a lot of issues with my jaw locking while eating last year) so I'm willing to wait to tackle that hurdle at another time.
Chronic Fatigue Syndrome
Cardiologist: My postural orthostatic tachycardia symptoms (feeling like fainting after eating, difficulty standing in one place for longer than a few minutes) started to recur while I was taking the medication for it (atenolol) last October, so I stopped taking the meds and they went away. So I have been off of atenolol since October with my cardiologist's blessing and go back to check in next year!
Sleep doctor (don't know the medical term for that): I recently had a sleep study to see if there was an underlying problem with my sleep that was contributing to my fatigue. I found out that I spend too much time in stage 2 sleep (a lighter stage) and have an alpha-delta sleep disorder in which my stage 4 sleep (delta--deep sleep) is broken up by short bursts of stage 1 (alpha--the lightest sleep stage), which leads to me having a sleep efficiency of only 69% (should be above 85%), meaning it isn't very restorative. I have started a medication (gabapentin) that is supposed to increase the amount of deep sleep I get, and thereby decrease the amount of lighter sleep. It is definitely helping--my average nightly sleep is now around 7 hours, down from 10-12 hours. It's still not perfect; I have trouble falling asleep and I generally wake up at least once or twice during the night, but I am much less fatigued during the day--a definite improvement.
Chiropractor: I've been working with a chiropractor since last fall when my general headaches escalated to daily migraines. I have three places in my back where I have weird things going on with my spine (my neck vertebrae curve backwards, my upper back is S-shaped, and the base of my spine is curved strangely) but with frequent adjustments (I'm down to one a week from the original 2-3 times a week, and should be going to every other week soon) am doing really well. Headaches are rare, back pain is much improved, general activity level increased.
New primary care physician: My last two primary care doctors were not very helpful/engaged/supportive and were even at times rude, so I am trying a new one. I met with her this past week and really liked her--she seems very proactive. We don't have a plan of action yet because she's taking some time to get familiar with my history, but she ordered several bloodtests to see if there's anything helpful there (including things like auto-immune disorder indicators, abnormal muscle protein levels, thyroid function, Epstein-Barr activity) as well as testing every three months for kidney and liver function, since I am on so many medications. She's also testing to see if the supplements I take are correcting my Vitamin D and B12 deficiencies (both of which affect energy levels). I'll see her again in a few weeks to see where we go from here.
Acupuncturist: I know the general reaction to this one it to be skeptical, but I see her once a week, and really think it helps. I feel more calm, more rested, more energized, and more mentally clear and healthy. If you've never had acupuncture I recommend it at least once, it's an interesting experience; I can usually feel energy kind of swirling around in me. I really don't know how it works, but I do very much believe that there is a real connection between our soul/spirit/whatever-it-is and our physical bodies, so maybe acupuncture is somehow able to connect to that. And if it's actually totally bogus and is just a placebo effect, at least it helps! : )
Mental Health (I'm not sure why the spacing got weird here)
I've been working with a mental health office for almost two years now that has therapists and psychiatrists in the same office so they can kind of work together.
Psychiatrist: Originally I was diagnosed with Major Depressive Disorder (MDD), and was treated with Lexapro (a selective serotonin reuptake inhibitor--SSRI), which helped to some degree (I was later to switched to Celexa due to insurance issues--that was disastrous) but I was still struggling. After discussions with some friends, an idea that I had a few years before resurfaced: Bipolar Disorder. In conjunction with my psychiatrist and therapist we agreed that my diagnosis was actually Bipolar II. (This is commonly misdiagnosed as MDD because while the depressive episodes are the same, the manic episodes are often overlooked because the are only "hypomanic"--for example, in a hypomanic episode, you might be hyperfocused on some activity or be impulsive or irritable, but they aren't as extreme and destructive as true manic episodes seen in Bipolar I.) My psychiatrist tried treating with increased Lexapro and adding Abilify (an atypical antipsychotic that is supposed to amplify the effects of antidepressants). However I was still really struggling, my symptoms actually got worse (which can happen with Bipolar Disorder when treated with antidepressants alone). Recently, we switched to a mood stabilizer (Lamictal) and a different kind of antidepressant (Pristiq, an SNRI--serotonin and norepinephrine reuptake inhibitor) that is a kind that they sometimes use to treat Chronic Fatigue Syndrome. And I feel: AMAZINGLY BETTER! Not in a drug-induced euphoria kind of way, but in a mentally clear and emotionally functional kind of way. I feel more like myself than I have ever felt in my life, more in control of my thoughts, emotions, and actions, more settled in my own bones. With my current insurance, these drugs are expensive, but definitely worth it. [Excuse me as I get on my soapbox for a moment: If you have or think you might have mental health issues, PLEASE seek treatment. They are serious, potentially-life threatening medical conditions that with therapy and (if necessary) the right medications can be treated. Please, please, please: do it for yourself and all of the people that you love and who love you. Just as you wouldn't ignore any other medical problems, don't ignore these. You can't fix a broken bone or heart condition on your own; you can't treat chemical imbalances in your brain on your own either. Please please please.]
Therapist: I started out with one therapist two years ago that I like to describe as the kindergarten teacher of therapists; she would draw me little pictures and talk to me in a syrupy voice--I would leave her office feeling even more overwhelmed and confused than I did when going in. As you can imagine, I didn't see her very long (since she's been a therapist for years, I imagine she's helpful to somebody, but definitely not to me). I started with my current therapist last May, and he's exactly the right fit for me. He has never drawn me a little picture (thank God!) and it's kind of like talking to a patient, funny, insightful, non-judgmental friend who is very affirming and willing to call me on things--what a relief. Even though I only see him every few weeks at this point, it's helpful even to know that I'll be able to talk to him about certain things when I do see him. I'm glad that it only took me two try's to find the right therapist!
Work: I was working full time in a food safety lab for awhile, but it was really physically demanding and I worked the night shift! It was really hard on me, and really damaged my physical and emotional health. I quit at the end of February and though it took awhile to recover, I am now doing much better, and am in the process of looking for a job that better fits my needs and limitations (though my recently discovered life's ambition is to eventually be able to be a homemaker/housewife/whatever-you-want-to-call-it). I had an interview this week that I felt good about, so we'll see how that plays out. In the meantime, I'm doing some general office work for my chiropractor a couple of days a week.
Home: I'm living with my parents right now, and that has been great. Nice to spend time with them, but difficult to fit all of my stuff in here! I'm currently in the process of cleaning out and organizing the house--I love it!
Exercise: I've been doing well enough that I've actually been able to exercise some--I've been doing yoga and bike riding. I tried a class at the gym but it was a little too intense for me. I gained some weight over the last year due to medications/depression/bad eating habits/lack of exercise, but I'm pretty much back down to where I was before. : )
Travel: I recently went to Florida for a week with my parents to visit my sister, and actually did really well. Because of my CFS, travel is usually really difficult for me, but I was able to be up and moving on time almost every day (only slept in one morning!). Very encouraging.
I'm not perfect or cured by any means; I still have days where I'm very fatigued, I'm trying to figure out what kind of diet (diet as in, meal/food regime, not a thing to facilitate weight loss) I should be following since food tends to really affect how I feel, I still have some trouble with mental clarity--I carry a notepad because I'll forget things if I don't write them down and have had to do so much editing while writing this because of my frequent mind-slippy typos (please forgive any I missed!), etc, but I am doing much much better and am more hopeful about my prognosis than I have been in a long time. I'm learning to be a much better advocate for myself to make sure I get the best care possible.
I think that's all I have for now. Thank you for taking the time to read this, thank you for all of your love and support, and forgiveness when some of these issues make being a person in my life difficult. Feel free to ask me any questions you might have.
If you're wondering if there's something you can do, I have two suggestions that would mean a lot to me.
1) Give blood. Because they know so little about what causes CFS, those of us with it are asked not to give blood or donate their organs just in case it would negatively affect the recipient. I don't like not being able to help people in this way, so I would really appreciate it if you would, if and when you can.
Here are a few links meant for those who know people with CFS that I think are a good start.