I hope I'm posting this in the right area.  I want to get my story out there in the hopes that someone will have a suggestion.  So here goes.  I'm 31 years old.  I have thought and thought and thought of what could have possibly caused my issues.  I started having symptoms around 9 months after buying my house and 6 months after meeting my boyfriend.  I didn't think anything of it but I did take some antibiotics around that time and I had not yet started my crazy hectic schedule of 2 jobs and school, so it obviously wasn't that although I'm sure it didn't help matters later on. Roughly two and a half years ago I started having some strange "symptoms".  Not really thinking anything was wrong, I just thought they were some weird "quirks".  I first noticed it one day when I was sitting at my boyfriends house.  I kept hearing something and couldn't quite place where the noise was coming from.  It then dawned on me that my ears were ringing.  Not so bad at first but as time has gone on my ears now ring like I have just gone to a loud rock concert.  Sometimes it is so bad that it sounds like feedback from a microphone yet I still have a perfect score on my yearly hearing test.  Like I said I thought nothing of it at first.  I just chalked it up to wearing ear plugs everyday at work.  A few weeks later I start noticing that I'm short of breath all of the time.  It gets so bad that when I lay down in bed I have to sit back up because it feels like I'm going to suffocate.  Once again I try to ignore it thinking that I just have a small chest cold even though I have no congestion.  My hair then starts to fall out.  Not bad enough that I have bald spots or anything, but bad enough that my hair dresser holds up a ball of hair and says "What is this?!"  I told her that "they tell me nothing is wrong"  and she replied "Well I'm no Doctor, but something is obviously wrong".  I have lost track of a time frame but over the last couple of years more symptoms have appeared, each more strange than the last.  Here is a kind of compilation of the rest of my symptoms.  I put on fifty pounds FIFTY POUNDS in less than a year (twenty of it within a week and a half...I thought I was pregnant!) without changing a thing.  Not the way I ate, the way I exercised, or even my job.  I'm mortified about this but I went from 137lbs to 176lbs in less than a year.  I was and still am beyond exhausted all of the time.  I thought it was from stress, but I'm now on summer break working 40hrs (on day shift so I have my evenings off) for the first time in 2 years (instead of 70+), and all of my bills are paid off except house, car, and soon to be student loans so I should be in heaven right?  I'm lucky if I can drag myself to the gym even though I have nothing but time after work and I should be able to keep my house spotless on a daily basis since it's just me and the dog.  Instead most days I procrastinate everything, grab some dinner and watch TV or read a book.  My eyes have also dried out to the point that when I wake up in the morning my eyes stick shut like I fell asleep with contacts in and I have troubles focusing since I see spots ( yet I have a normal eye exam every time). I have this weird "creepy crawly" feeling acrossed my scalp and most of the rest of my body like my skin is "crawling", and I want to rip your face off, cry, and laugh all at the same time.  My skin is now dull, rough, and leathery, and I have dark circles under my eyes that make me look like I got punched in the face.  I have had so many people make the comment that I look tired that I could just scream.  I secretly wanted to cry when people started guessing my 38 year old boyfriend younger than me.  He does have a babyface, but still.  It breaks my heart because I should be popping out of bed excited to be working on my internship in the HR Dept. at work.  I should be dressed like a million bucks with my hair done and makeup on.  Instead I roll out of bed with barely enough time to get dressed put my hair in a frizzy ponytail and make it to work without a minute to spare.  I think that pretty much sums it up for my symptoms and I swear I'm not crazy.  I just cry at remembering how I used to look and feel and I have to show people pictures because they don't believe the change I have gone through.  I usually get that big eyed look of amazement.  As for treatment......here goes.  I started with my family doctor who thought that maybe I was having an allergic reaction to something.  She noted that my ears were really inflamed.  She also tested my thyroid (low but within range so we're not going to treat).  So on to an allergist I went.  Not allergic to a thing.  Strong lungs and good lung capacity.  "Non-allergic rinitis" with some nasal spray that causes all sorts of scarey things.  Back to a different GP hoping for different findings.  I told him that I was at the end of my rope and wanted some answers.  He took a family history and all of my symptoms and ran a battery of tests based on that.  Heart disease, diabetes, sleep apnea, and cancer all run in my family.  So he ran everything from bloodwork to a stress echo, to a sleep study.  Once again thyroid is borderline but we're not going to treat.  Heart is healthy as a horse.  Congratulations you don't have sleep apnea, you have narcolepsy. (I don't fall asleep walking down the street or anything...I do have problems in meetings, but who doesn't.  I guess it's when your brain is stuck between asleep and awake?) Congratulations?  OK.  The treatment was these awful stimulants (I'm sensitive to even caffiene).  I couldn't stop moving or talking and I was shaking so bad I couldn't sign my name.  My chest started to hurt and my blood pressure went through the roof.  The doctor at least admitted that if he couldn't figure it out that it was out of his realm of training and that he would have to refer me on to a specialist.  It was up between a rheumatologist and an endocrinologist and he felt that my problem was hormonal so he sent me to the endocrinologist, but also made me an appointment to the rheumatologist (thinking I might have rheumatoid arthritis).......Ya I chickened out of the apppointment with the rheumatologist.  I did however keep the appointment with the endocrinologist.  I had to travel all the way to Lincoln for this appointment, so I was actually pretty excited thinking I might actually get some answers once and for all.  I was in his office for around five minutes and he starts rattling off all these questions, do you have pms, do you have ovarian cysts, are your periods regular, have you gained a lot of weight, and a lot of other questions I can't remember.  Crazy enough all of these questions were ringing a bell.  He also performed and exam and drew blood.  By the way my thyroid that was "within range?"  He didn't like it and put me on thyroid medication.  Bloodwork came back and I have low progesterone.  Ok good there is a hormone replacement for that.  What he ended up telling me is that he thinks that I have PCOS (poly cystic ovary syndrome).  There is no way to test for it (they base it on an exam) but it causes insuline resistance, weight problems, sometimes cysts but not always, and pms and a lot of other not so fun things I can't remember.  I'm to get the weight off but I'm having a heck of a time.  He says its kind of a nasty cycle but I have to get the weight off.  He has even suggested diabetes medication.  Like I said I really like this doctor.  He really knows his stuff and is very straight forward with any questions that I have.  He tells me that I need to be patient that we will figure this out and I really appreciate him for that, but how patient can you be after almost three years?  I appologize now that I have written a whole book!  It's just that very rarely have I found a doctor or anyone else for that matter who I can be candid with thats not going to look at me like I'm a head case?  It feels good to know that there are other people out there who have the same problem.  Thank you to all who have taken the time to hear me out. 

Views: 271

Replies to This Discussion

Tara -
Thanks so much for sharing! I'm sure there are countless others out there who can relate to your story. I read every word of what you've endured, and I know you're not crazy. I feel sure there will be answers for you very soon! I forwarded your story to our members; hopefully you'll start getting helpful comments soon!! I can also post your story on our Facebook wall if you'd like - we tend to get TONS of feedback on there! If you'd like to give an MSG/glutamate-free diet a try, please get in touch with me and I'll help you get that figured out :) It is amazing how many symptoms can be alleviated or resolved be eating REAL foods :)  402-558-8411

Christy

I did not finish reading everything (I will) but I would highly highly suggest you get the Gaps book.

It has help almost everyone who tries it that I know. It changed most my "hopeless" symptoms around. I had no hope and the Dr.'s couldn't help. It save my life!! I also had so many weird symptoms after stress. The diet is not a fad. It just whole healthy foods and healing your immune system and gut.

http://www.gapsdiet.com/GAPS_Outline.html

Please feel free to email me!!!

thomasandchristin@yahoo.com

Tara,

Have you tried cutting out all wheat and sugar? You might give that a try for a few weeks and see what happens. It seems the less I eat of these things the better I feel especially with my Fibromyalgia symptoms.

I had similar things from the doctor..."We've never seen anything like this, you should be dead, we don't know what to do, but here take this pill." What helped me the most was getting rid of MSGs, all sugar alternatives (id asphartame, etc.) and preservatives, etc.. We also started changing one thing each month in our diet. If our 7-year-old grandson can't pronounce it, we try not to eat it. 5 years ago 122 pills per day, today no prescriptions, still a ways to go, but going in a positive rather than a negative direction. Hope this helps.

 

Tara,

Has anyone checked your blood level for vitamin D? This does sound like symptoms of PCOS. I would get in touch with Weston Price chapter. If you are a long- time "pill" user and been on accutane, you could be set up for this. Especially if your diet is lacking in Vitamin D and the good fats to utilize it. If your ovaries are cystic, they can heal over time but it will take time to heal. People with PCOS actually do well on the Adkins Diet. I would not advocate that diet generally, but many are famiilar with it. Generally, recommendations are get off grains and, and any high glycemic foods. Stay away from soy or other estrogenic foods. Get carbs from low glycemic vegs. Use good fat like coconut oil. Protein from grass based animals.  Take a good cod liver oil to boost vitamin D and A, some do not have enough A and you need both.
They are fat soluble and you need fat to assimilate. Get plenty of omega 3 fats and stay away from processed veg. oils.

You will find info if you search Weston A Price Foundation --google wapf.

I hope you will have heart that this can be solved!

God Bless,

Luke Jacobsen

Check out food intolerance which are different from food allergies. I consult with Margaret Ulmann-Weil at Lahey Clinic in Burlington MA 781-744-1022. Though she is in MA she might be willing to assist you with this. I had my blood tested via nowleap.com (MA BCBS reimbursed me for the testing). From this testing I am sensitive to several foods and ingredients that were causing minor tummy upset (vanilla), achie knees feet fingers (soy and.or corn), swollen itchy eyelids (Food dyes), sinus and ear canal congestion (mushrooms), possibly related to my tinnitus. These are just a few of the symptoms that I have been able to possibly pinpoint to intolerant food consumption. Be well Tara.

Tara,

Thanks for sharing your story!  I know you are not crazy, as well!!  I have also been on a mystery tour of my strange symptoms.  I will say following a healthy diet is extremely helpful, no matter what is causing the problem.  Many processed foods can cause inflammation, which will only exacerbate your symptoms.  Along my journey,  I was diagnosed (kinda) with vestibular migraines...described to me as migraines with or without the headache, with dizzy spells, plus I had problems with my vision and hearing (ringing), all of which can be more problematic around your cycle.  I was also very hypoglycemic. (Both of these I believe were just after-effects of something else going on.)  I received a  lot of help from Nicholas Schnell of Four Winds Natural Healing Center.  He specializes in traditional chinese medicine.  I don't know a whole lot about PCOS, but I do know there is an MD in town at the Pope Paul VI Institute that teaches women to deal with problems like PCOS as naturally as possible, mostly by charting your cycle.  Good luck to you, and keep advocating for yourself!

Emma

WOW – I appreciate hearing your story – it takes me back!  A few years ago I was EXACTLY in your shoes after several doses of antibiotics and steroids and I was close to your age.  Doctor visits never helped and left me frustrated and in tears – there was never a real diagnosis. So MANY times I asked my husband if HE thought I was crazy – I was really starting to think I was – I just wanted to CRAWL out of my SKIN.  I had no energy and even if I DID have energy I had NO motivation anyway along with all the symptoms you describe and more.  I remember being SO jealous of all these people driving, walking, working alongside of me and they seemed to be feeling FINE – what was WRONG with ME?  After HOURS and MONTHS of my OWN research I kept coming back to these “crazy” healthy diets people were promoting as helpful for them – I thought it was all hooey – how could THAT help?  And I was in denial that I needed to make such adjustments.  After failed Doctor visits, “naturopath” visits, supplements … I started out trying the high vegetable, low fruit, meat, no grain type diet (NO process foods, sugars etc) for a couple of weeks – it took a week or two the first time but it REALLY helped … then I’d think I felt fine and go back to the typical American diet only to end up not feeling well again.

Eventually my OB/GYN put me on fluconazole (diflucan) for recurrent yeast infections and yeast overgrowth after another bout of antibiotics (due to mastitis while nursing).  I had ALWAYS suspected I had this – I SWEAR it was EXUDING from my pores - yeast was something my first DR had poo pooed although I had asked him to consider it.  I ended up being on the meds for well over a year – finally my OB/GYN said I really needed to try and get off of it for my liver’s sake … I knew then that my health was in MY hands and the answers really lay with ME.  I knew I had to figure out WHY my body was going through this.

I made MAJOR strides with changing my diet – I remember so many times thinking – I cannot believe people FEEL this great!  And it also made me realize how HORRIBLE I had felt before.  This path led to yoga, meditation, self reflection, focusing on my priorities and what REALLY makes me happy.  I traveled this path on my own for quite a while and made great strides but still had major trouble breathing at times and several other symptoms so I knew I needed some … tweaking and help from a professional.  That’s when I started going to Dr Patricia Ryan at the Center for Conscious Living in Rockbrook Village and I could NEVER have made a better decision.  Her approach is to get to the root CAUSE of your symptoms – she practices Functional Medicine and is an MD.  When you feel as horrible as I did (and you do) your body is SCREAMING out about something – and she can help find that and turn things around.  She also has a nurse /nutritionist that patients meet with.  Allergies, inflammation, and low thyroid function are all your body’s way of sending signals to you to CHANGE something – and they will turn into worse things if not treated, arthritis, osteoporosis etc.  Through testing with Dr Ryan I found out I am allergic to dairy – who knew?! My diet and exercise are VERY important – and these were the HARDEST things to change – especially when you feel like CRAP and just want comfort food - but the better I feel the EASIER it gets.  There WILL be cravings to fight but you can DO IT!  Small changes help and they start adding up and up until you’re well on your way to a healthy diet and feeling great. 

I do need to give you a head’s up that your insurance may NOT cover Dr Ryan and she isn’t contracted with any insurance companies – the first visit may be quite expensive but they do have payment plans; think of it as an investment in YOU. Dr Ryan also has free monthly orientations so you can go and see what her approach is prior to a visit. 

You can truly get your health back – 100%!!!! If you plan on having children NOW is the time to start – it will make your pregnancy easier and will be a LOT healthier for your baby(s).  I wish I would’ve …

Things that may provide a little relief at the moment – GT Kombucha – a detoxifying drink you can find at Whole Foods or No Name Nutrition, Amazing Grass Super Foods you can find at Whole Foods or on Amazon (a pH balancing /detoxifying drink mix), TONS of clean water – drink like a GALLON a day, a good B-complex Vitamin.  You may also want to look into dry skin brushing and may find an Epsom salt bath soak soothing.  You can do drop in yoga sessions or even buy a DVD (my intro to yoga was the DVD “Yoga for Dummies”). These things won’t heal you – but they will contribute to your healing and you may find a little instant relief from them. You’re on an eye opening journey – I wish you the best and remember you ALWAYS have support here!

Also consider taking an extensive allergy patch testing through a dermatologist (UN and/or Creighton Medical Center most likely to have this extensive testing). Are you, your gentleman friend, pets, colleagues using new products for the home, personal care, laundry? All potential allergens/intolerance. Even current products can turn to irritations when our immune systems are heightened/dampened. I personally have stopped using bathing, facial, hair care products not knowing what was causing my eye irritations. I stopped using fabric softener in the washer/drier; to me, our clothes are soft. For nearly a year, I even washed our clothes 1 time with laundry detergent and 2 times without through pre-rinse, full wash, extra rinse to ensure complete removal of all potential chemical residues. This is the last front loader washer I will have for one must use the special laundry detergents in them. With top loader you can wash with something as simple as baking soda, borax or no detergent.

 

Since you have moved into a new home, I am assuming a new neighborhood for you, consider the plumbing, air systems in your home? What industries are in your neighborhood? What lawn care practices are you, your neighbors, community partaking in?

 

Are you taking a probiotic? I am beginning to realize how much our GI system truly affects other parts of our body. It is one of three (respiratory, skin) means of "foreign" entities to enter our body. Tons of studies indicating changes in the GI tract may be leading causes to many of our ailments unrelated to food consumption. Consider GI bacterial overload, gluten intolerance testing, fructose sugar tolerance and there are others that are administered via GI specialist.


I experience Crohn's like condition in my GI tract. I have earned a BS in Microbiology, an MS in Immunology thus my view point is slanted towards these areas as leading causes for many of the conditions we are experiencing today.

 

Vera Volk said:

Check out food intolerance which are different from food allergies. I consult with Margaret Ulmann-Weil at Lahey Clinic in Burlington MA 781-744-1022. Though she is in MA she might be willing to assist you with this. I had my blood tested via nowleap.com (MA BCBS reimbursed me for the testing). From this testing I am sensitive to several foods and ingredients that were causing minor tummy upset (vanilla), achie knees feet fingers (soy and.or corn), swollen itchy eyelids (Food dyes), sinus and ear canal congestion (mushrooms), possibly related to my tinnitus. These are just a few of the symptoms that I have been able to possibly pinpoint to intolerant food consumption. Be well Tara.

Tara, 

Have you ever heard of Natural Cellular Defense?  You can see the BioChemist and a Triple Board Certified Doctor that brought the product to market on www.sharethecause.com.  It is a nine-minute video, but I think that is where to start to find what is the cause of your problems.  It will explain how this little bottle of liquid zeolite can remove heavy metals and toxins from your body which could be the underling cause of many of your problems.

My daughter just won a biggest looser contest using a natural product call Burn.  It helps burn the calories faster.  You can see it on www.mywairora.com/dj and it is on special now where you can buy two and get two free, a really good deal.  There is a Doctor's call every Wed. at 9 p.m. and a Testimony call every Thus. at 9 p.m. on 641-594-7000 code 6787654# where you can get your questions answered.  Let me know if you would like me to 3-way you unto one of the calls, or if you have questions you want answered before that just give me a call at 402-651-1511.  There is hope.  Jane

I should add that quitting coffee worked WONDERS for me in less than 2 days - of course there were still a lot of changes to make and I know it sounds CRAZY to most to give up coffee (believe me - I thought so too!) - but it may help at least jump start your healing process and give you quick relief.

 

There are a lot of different ideas in these replies and I'm sure you may feel overwhelmed (especailly considering you feel that way ANYWAY).  One suggestion from what I learned on my journey is: follow what feels RIGHT to YOU, right now.  Look into any suggestions that resonate with you in your current state, no matter how anyone else may feel about them.

 

Good luck - keep us posted and we'll all support you!

Hey Tara,

 

I have no idea what's wrong with you, unfortunately, but I would recommend you check out this documentary: http://www.foodmatters.tv/

 

It's available on Netflix if you have it.  They talk a lot about organics and super-foods as health alternatives.  The website also has a resource section that might be able to help.

 

The problem with doctors is that their entire group of knowledge is medicine; they know nothing about nutriotion.  Using medicine to treat long-term health problems is ridiculous, since the majority of these problems relate to diet.  The documentary goes deeper into this, in more eloquant language than I could use, so I'll let them explain in-depth.

 

Best of luck,

-Dan

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