as good as it gets?

AAAHHH! · 03-19-2007, 04:42 AM

I was 19 years old when my then highschool sweet heart and I realized I was pregnant. We were shocked because I hadn't had a period for over a year. ( surprise !) Looking back now, I can say that I demonstrated pretty significant symptoms throughout the bulk of my teenage years. My mom always chalked it up to my irresponsible usage of oral contraceptives and poor diet. I started out with twin pregnancies but lost one when I was close to 14 weeks. I had a miserable pregnancy but was blessed with a healthy 8lbs 10 oz. little girl. I weighed maybe 140 lbs when I became pregnant and topped 220Lbs right before I delivered then stuck around 190lbs ( @ 5'6) afterwards. I had a terrible OBGYN who was extremely unsupportive and didn't listen to my complaints. I had pretty bad acid reflux throughout the course of my pregnancy and I threw up most of what I ate. There was no reasonable justification for my excessive weight gain. After the birth of my daughter my PCOS symptoms worsened dramatically. I thought I was crazy. I became a single mom when my baby was three months old and every doctor that I complained to attributed my symptoms to stress/ depression/ obesity. I was finally diagnosed three months ago with PCOS and extremely low Iron. I've lost close to 25lbs since being on metformin and spirolactone ( also take adderall for ADD I've had since childhood) but I feel like **** most days-even with vitamins. My face acne has almost completely gone away but the body acne has not improved and I still have to tweeze wild hairs. My period has returned. (yay!) I struggle with maintaining my energy. It comes in random bursts that are usually followed by exhaustion spells. Some of these tired spells have flat out scared the crap out of my family. I'll quickly become loopy, weak and even slur my speech or stutter. It almost always passes within an hour or so. I also have unexplainable body/joint aches- everyday I am sore. There have been atleast three or four different occasions when I have experienced headaches that were accompained by blurred vision. As tired as I stay, I never can easily fall asleep at night. Also, I almost always feel worse after I eat ( especially if its meat or carbs). With my hectic lifestyle -there are admittedly times that I forget to eat or even intentionally skip a meal because I know how eating will nake me feel. I'm twenty three years old but most days I feel like I'm older than my mom. Speaking of my mom- She suffers from CFIDS and that muscle syndrome that begins with an F. I'm Not sure if there is any link between what she has and what I have...
With the exception of this PCOS crap, I am farely content with my life. I have an awesome little girl and wonderful family and friends. I love college (but still feel eager to get it over with

I miss the silly, light hearted, and energetic me. I want my life back. I'm trying really hard to eat/sleep/ and exercise right. Is there anyone out there with the same nontraditional symptoms as me? Are these symptoms even related to the PCOS? (muscle/bone aches, some headaches with blurred vision/dizziness/insomnia/fatigue/lack of sex drive (no nada zip)/forgetfulness/clumsiness/weak spells....I swear to god I feel like a big fat baby for whining about all of this. I[ know that there are people with far worse afflictions in this world but PCOS is none-the-less the most frustrating aspect of my life.
Having been on the medicine for three months now- when should i expect to start feeling better? or is this is good as it gets?
PS> God bless all of you out there struggling to become pregnant. I read alot of the forums and wanted you to know that I am truely sorry for your pain. The doctor told my that it was a miracle I even became pregnant in the first place. I guess its fitting that my daughter's name is Grace. The best of luck to everyone.

Jashobeam · 03-19-2007, 10:41 AM

Welcome to SC! What tests did your doctor run on you? You should have been tested for at least Cushings, diabetes, thyroid problems, liver problems, and insulin resistance. Have you been tested for chronic fatique syndrome and anemia?

What medicines and vitamins/suppliments are you on?

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Allison. · 03-19-2007, 11:03 AM

Hi
What type of treatment are you receiving for your low iron?
When I was severely anemic, I suffered from fatigue, dry skin, dizziness, hair loss, headaches, body aches and grouchiness ;-)
Did your doctor order an iron study? I wasn't able to rebuild my iron store orally. I ended up having an infusion.
What is your testosterone level? Once I got my levels down I didn't have anymore unexplained weight gains. It can take several months for the full benefits of metformin to kick in. I remember I was actually happy to have a real period for the first time. Things will just get better. Apparently metformin has something that is helping your body. I hope that you feel better soon..

Mustangsally82 · 03-19-2007, 11:34 AM

I know exactly what you mean. I have spent most of the last five or six years feeling the way you describe. Even when I was sleeping goodI was still tired all the time, had joint/muscle aches etc.

I started getting B12 shots in January, and I'm going for my third one this week. It has made a difference somewhat: I'm not sleeping good so that doesn't help but I have noticed a difference with the B12.

I also started taking vitamins this week (the Viactive Flavor Glides are really easy to swallow) so I hope that helps. We'll see. I think PCOS can cause fatigue and pain in a lot of us, and if it's caused by the hormones then who knows how to correct it?

I hope you feel better soon. I don't have any children so I can't imagine having to take care of them when you feel so badly. Lots of luck!

Jhawkfan83 · 03-19-2007, 05:54 PM

I was going to ask the same thing as Allison. Are you taking Iron supplements?

I was suffering from chronic fatigue (I also have hypothyroidism which will cause fatigue too) but my levels are finally therapeutic, so I had to look at other outlets. I got some suggestions from some of the girls around here to take Vitamin B complex to help with my low energy levels. I have been taking them for 3 weeks now and- BOY have they made a difference. I feel like getting out and doing more things- I don't spend so much time wishing I could go to bed. I sleep well at night and now I am even getting a little bit (maybe once a week as compared to every year) sex drive back.

Moripoza · 03-21-2007, 04:01 PM

I would ask the doctor to test you for diabetes, my dad has it and gets blurred vision, woosey, etc when he eats too much sugar and his levels go too high? Maybe have your thyroid tested too for the tiredness? Either way I would try to talk to the doctor and have them run some tests.

BobbysMommie · 03-21-2007, 04:27 PM

to SC. I don't have low iron but can sympathize about the depression. I don't remember having such a problem when I was younger. Some days I'm totally motivated and then others I'm lucky to get to work on time. I sleep okay but some times feel like it's not enough even though it was 8 hours. I think that's just the depression to a certian extent but also I know that being overweight has a lot to do with it. I think being heavy makes your body have to work that much harder. Like for instance carrying my son up my front steps, I know that shouldn't make me winded but it does. I'm starting to take Wellbutrin for the depression (If I can remember to actually take it!) and hopefully can get a doctor to help me loose some of this weight and get my PCOS symptoms under control because I truelly believe that they go hand in hand. So hang in there and keep letting them know that you don't feel better, doctor wise I mean. If you don't demand good care, they'll just keep telling you it's depression.

ILUVGSUS · 03-22-2007, 04:49 PM

I would ask your doctor about the Adderall. I'm the same age as you and have been taking adderall since I was 14. It worked out great for me in terms of managing my weight, staying focused and having energy. But after all these years I have noticed that it masked other conditions I had, such as PCOS. I have always gotten my period once a year, but my doctor told me that this was from taking the adderall. I discovered that it wasn't from the adderall, and that it was really the PCOS. But the adderall does cause severe headaches, severe depression, bipolar, nausea, fatigue and irritibility. I had to get off the metphormin because when mixed with adderall I would experience severe cramping of the stomach, intestinal issues and nausea. I ended up getting off metphormin and lowering my dose of adderall and it went away. If the metphormin helps with your symptoms of PCOS, I would suggest starting out by lowering the dose of adderall and consuming higher amounts of protein and lower amounts of carbs.
Most doctors say that Adderall doesn't affect other meds, but they don't know enough about adderall to say that. The side effects vary with the person, their diet, and activitiy level.

Also, since your mom has Fibromyalgia, you should get checked out for that as well. Fibromyalgia causes severe migraines, pain in the joints and muscles throughout the body, & blurred vision. I have worked with clients who have Fibromyalgia and their symptoms sound very similar to you, and typically the symptoms start right around the age of 22 or so.
I hope this helps

AAAHHH! · 03-25-2007, 05:01 PM

Thank you for all of your advice. To answer some of your questions:
* I take: Metformin 500 mgs ( at suppertime)
Ampicillin TR 500 mgs ( on empty stomach)
Adderall XR 30 mgs ( morning)
Spironolactone 30mgs ( morning)
"One A Day" Maximum Vitamin (x2 in morning)

* The headaches are very infrequent. they have only occured maybe 4 times.
* (after many misdiagnoses) depression isn't a factor for me. more like frustration.
* Since starting the medicine a few months ago, the weight has indeed melted off but I
don't feel any better.)

I went without proper medical care from the time I was 18 until a few months ago because I was no longer covered under my parents health insurance and I could not afford my own. During this time, I used a clinic for all of my primary care, with the exception of when I was pregnant and recieved temporary health insurance from the state. The clinic's services were fairly limited. I was able continue my adderall b/c there was an assistance program available for it. I recieved annual paps ( all normal). When I was finally able to afford my own health care a few months ago, I went to my doctor and immediatly presented her with a written list of all my symtoms. She ordered a ton of bloodwork and started me on the Metformin and spirolactone that day, just based on my complaints. She briefly told me that my symptoms were likely caused by PCOS.
"Take this medication and eat right- the weight will fall off, your period will resume, and you will feel better." I had an rather painful ultrasound performed two days later and by the end of the week she called to confirm that I did have numerous cysts, my hormone levels were abnormal, and that my iron was extremely low. THAT WAS IT! She never explained to me specifically what tests were performed or what my lab results actually were. She certainly did not explain to me everything that I was lucky enough to learn about from this website. I really thought that once I started taking the medicine, everything would get better. She did want me to take iron pills but when I told her that I have never in my whole life been able to keep iron pills down, she said that a good multi- vitamin would be fine. Because of how bad I have felt since I began the medication, I moved my follow-up appointment up a month. I have an appointment with her this wednesday.

What do you guys think that I should "demand" ( for lack of better words) or expect from her? Is she doing the right thing? Can I request copies of all the tests that were performed? Specifically, what tests should I make sure are performed (if they weren't already)? Should I find another doctor? Different medicines? Is it rude to request a specialist? At what point is seeing a specialist necessary?

With the exception of the health clinics I mentioned before, I have never really managed my own health care. My parents handled everything when I was a kid and it was only recently that I have even been able to see a "real" doctor since adulthood. I don't really know what I should expect in terms of good/thorough medical care. I really want to learn how to be pro-active.

Jashobeam · 03-26-2007, 12:46 PM

Yes, you should ask for results of all tests to be mailed to you. Some offices will charge you for this, but it's worth it to have the results. Ask for the numbers or positive/negative, not just the words "normal" or "elevated."