I am losing hope, drs have no answers for me…

Posted by helpwanted @helpwanted, Dec 13, 2021

Hi,

This is kind of long, so to whoever reads this, thank you, I am desperate for insight/help!!

Basically, I have been blaming all of the below reasons for why I feel so horrible with the following symptoms: short of breath, feel like going to pass out – especially when standing up, lightheaded, racing/irregular heartbeat, extreme weakness/fatigue, acid reflux/silent reflux, every time I lay down it causes me to have to sit up to burp otherwise I’ll choke and have reflux, “derealization/depersonalization” (I think that’s the feeling – I feel like I’m “not real” or “not here”, can’t describe it), very anxious/depressed (but I feel these are related to feeling terrible everyday for almost 4 years now), closed up sinuses, brain fog, vision feels off/eyes so sensitive to light/feels heavy and like it’s too much to hold them open. I can barely get out of bed, and I can’t work. I’ve had 2 unexplained retinal hemmorhages. I’m sure I’m missing a lot but….brain fog so I can’t think lol.

For the past 3 years my body has been through hell and back due to having 2 major endometriosis surgeries within 8 months, then a sinus surgery soon after. Ive been constantly recovering from surgeries, doing physical therapy etc. I was put on a ton of (unnecessary) meds after my first surgery for extreme pain outside of normal surgical pain, which was due to the fact it wasn’t a complete excision surgery and Endo was left behind.

I ended up on klonopin (due to the fact I couldn’t sleep due to extreme pain – I was not told to come off of it after a few weeks as its meant to be used, and I was kept on it over a year!), gabapentin, amitriptyline, nortriptyline, viibryd, mirtazapine, and I’m sure I’m missing some. I weaned off of everything. All I take now is Xanax as needed, as I now have medical trauma/ptsd from all I’ve been through. I’ve thought that all the above was the cause for how I feel currently, but I’m not sure anymore.

I recently found out my ferritin was low – it had been 17, 12 and is now up to 38, so I don’t know if it could be causing symptoms. I am also wondering if anyone has any experience with Epstein Barr Virus here? I worked with a functional medicine doctor last year, who said my triple digit viral load was a problem. Long story short, she was apparently a very money hungry person, and we didn’t address any of my issues after thousands of dollars, so I didn’t want to continue working with her. I feel she withheld treatments in order to convince me to purchase a second program with her. We didn’t address my acid reflux/silent reflux or EBV. She also found my ferritin levels to be 17 and then 12 when tested again, but again, did not address this issue. I also usually have a low white blood cell count. (Just trying to think of anything that could possibly be important.)

Thursday my ferritin was up to 38 (I haven’t supplemented yet AND was on my period), so I’m not sure how it raised up, but starting to doubt that it is my main issue. I feel so much worse now with my ferritin at 38 than I did with it at 12. Doesn’t make sense to me!

The past 3 years have been hell for me. It started out with being exposed for MONTHS at work to perfume I was allergic to – except I have no sense of smell, so I didn’t know why I couldn’t breathe everyday. It was an office building, and pretty dusty. I worked upstairs, but I found mold on the wall in the basement, but not sure if that had anything to do with anything.

During this time, I could not breathe. First it was just at work while exposed to the perfume, but then it was 24/7 no matter where I was. Drs put me on nebulized treatments, 4 inhalers, steroids, antibiotics etc. Nothing helped and my pulmonary function test was perfect! My stomach also was so distended I looked pregnant (still do). I also started having excruciating pain in my pelvic area, up my right ribs and down my back. After seeing 11 specialists and all telling me it was “in my head”, I thought I might have endometriosis, which is only diagnosed via surgery. (I was correct.) I then had 2 excision surgeries for endometriosis within 8 months, extreme pain/tons of meds that were unnecessary and caused my body to be dependent, and it was very hard to wean off, but I did get off them all.

I then had sinus surgery this summer as I can never breathe through my nose, and allergy pills/sprays/inhalers didn’t help. I didn’t get relief from surgery, and then started having major acid reflux – THAT made me realize the reflux was really just an exaggeration of what I felt everyday, (it was closing up my nose, making my throat/chest tight and making me feel I couldn’t breathe) and was told I had “silent reflux”. I’ve had 2 endoscopies and a barium swallow that showed nothing. I have a Restech test in 2 weeks to see if I have silent reflux.

I’m gluten/dairy/corn free, basically survive on chicken and vegetables, I’ve tried low FODMAP, low histamine, etc etc. Basically, the only thing that has been relieved for me through the past 3 (almost 4!) years has been my pain from Endo (which I’m SO thankful for!) BUT, I still can’t breathe, feel so weak that even doing the dishes makes me have to go lay down and take a break. I’m now constantly wondering if I should go to the ER with how weak I feel (which tells you how bad I feel as with my medical trauma/ptsd, I try to avoid medical environments!) and I have no quality of life as I really can’t go anywhere as I’m constantly lightheaded and feeling like I’ll pass out. I have been seeing so many drs and having tests, and it just feels like I’m never going to get an answer or my life back. I am 33 and feel so hopeless as none of the specialists I see spend more than 15 minutes with me and don’t care enough to think outside the box. Next up I have another cardiologist appt, then thyroid ultrasound, Restech test for silent reflux, and who knows what else. Everything is just taking so long and I’m so tired and losing all hope. I feel like I’m slowly dying.

Interested in more discussions like this? Go to the Women's Health Support Group.

Greetings @helpwanted. Wow, that’s a lot to deal with. I’m really sorry you’re feeling so blue. I have basically had almost everything you listed there… Perhaps at a lesser degree. And perhaps not all at once. In the end however I decided to re-focus on my PTSD/anxiety, because I find a lot of things settle down, if I can calm my PTSD/anxiety. Shortness of breath, Heart racing, lightness in the head, acid reflux. Have also had endometriosis, deviated septum surgery. I’m currently taking Lexapro 20 mg every day and Xanax as I need it. I was taking the Xanax every day, because I am recovering from breast cancer right now (initially very upsetting, but caught early, treated by Mayo Clinic, I’m going to be fine), but I have weaned off the Xanax and only take as needed now. I actually try to keep the medication at a minimum, because they all have side effects, and then I can’t tell “what’s what” anymore. If I need it – I take it, but am diligent about understanding dosage, how long I need to take it, and side effects. Seems you are same.

Lately, I’ve begun working with a Yoga guru going through a program called the Four Desires, as well as a therapist from our church. In both cases, we’re focusing on my PTSD/anxiety. I’ve found this really helpful. It’s not a long-term thing, just something I do during the rough patches to get a little emotional/spiritual boost. I also do have a primary care physician and gynecologist, both female, who are very holistic and have known me for years. They help me discern what is being caused by stress and anxiety, and what needs to be treated medically. They don’t dismiss anything; and they are non-judging. It took a while… but I do feel like I have formed a very good care team for myself. Could this be a place to start for you?

I think I know how you feel… It just feels like you’re drowning in it all. Consuming your life. I promise it will get better… find your Care Team. What city are you in? Perhaps people on the forum here can help you find them. Who among your current providers do you feel bring you the most relief physically and emotionally? Perhaps you can start there.

I admire that you’ve had to manage all of this. I admire how you been prudent about the medication and weaning off when needed. You sound like an intelligent, strong, independent person. I send you infinite positive energy to get through this rough patch.

Wrapping you in a warm hug,
@kk57

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I was a lot like you @helpwanted several years ago. Have you had food sensitivity tests as well as allergy tests? They do measure different things. If you are in a moldy, dusty, perfumy environment, you need to address those areas. I wrote a booklet called "Food.. It's Driving me Crazy back in 1989 (33 years ago) because I was suffering from so many different issues and the doctors blamed it on being all in my head.

I saw a functional doctor wanna be a year ago and wasted money so I understand what you mean by that. However, I am going to see another that I have much respect for in the practice with Parsley Health.

I suggest you look into that practice and also check out my blog, jazzyoldbroad.com, for more info on what I've gone through and how I began to help myself.

We are all different obviously and your situation may be totally different from mine but having experienced very similar issues and having overcome most of them, it won't hurt to at least check it out.

Good luck to you and I wish you much better health.
@jazzyoldbroad

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This may sound like a small thing but have you been extensively allergy tested? I don't mean just a few pin pricks. I'm talking about a full panel likely done by an immunologist. Reason I ask is when we moved to Florida, I spent three years feeling out of body, like I was going to pass out, nauseated and a whole host of other problems. For three years I was checked out for everything. Even allergy testing (from a quack). I finally went to another county to a specialist. Turns out I'm allergic to over 20 things including weeds, grasses, trees, and man made items. For five years I've taken three allergy shots a month. It changed everything.

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@jazzyoldbroad

I was a lot like you @helpwanted several years ago. Have you had food sensitivity tests as well as allergy tests? They do measure different things. If you are in a moldy, dusty, perfumy environment, you need to address those areas. I wrote a booklet called "Food.. It's Driving me Crazy back in 1989 (33 years ago) because I was suffering from so many different issues and the doctors blamed it on being all in my head.

I saw a functional doctor wanna be a year ago and wasted money so I understand what you mean by that. However, I am going to see another that I have much respect for in the practice with Parsley Health.

I suggest you look into that practice and also check out my blog, jazzyoldbroad.com, for more info on what I've gone through and how I began to help myself.

We are all different obviously and your situation may be totally different from mine but having experienced very similar issues and having overcome most of them, it won't hurt to at least check it out.

Good luck to you and I wish you much better health.
@jazzyoldbroad

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Hi! What's a functional doctor? Thanks, Jeanne

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@helpwanted-Good morning, it's nice to meet you. It sounds as if you have handled way too many things for a young woman. This must be very frustrating and scary. Since you have mentioned reflux several times if I were you I would see a GI dr. It sounds as if you might also have SOB- shortness of breath. So a pulmonologist would be the doctor to see for this.

I think that you definitely need to pursue this further with great suggestions for an allergist too. In order to do this, you have to push beyond what you think you can do and do more in order to help yourself. Also, you aren't alone in this feeling of hopelessness because there are other women who feel this way.

Take a deep breath, slow your breathing down and decide which doctor you will see next. You have to fight and fight for yourself sometimes in order to feel better, and you are worth every second it takes to do this!

So which doctor do you think you might reach out to first?

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@lioness2001

Hi! What's a functional doctor? Thanks, Jeanne

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Hi Jeanne. I'm not selling anything but I do have a blog and will have an article out this Saturday on my journey with functional medicine where I'll discuss what functional doctors do and how they may differ from traditional doctors. My blog is:
jazzyoldbroad.com jj

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Hello,

Please dont lose hope! I had some similar symptoms you describe. You need to find the right doctors. You sound like me a few years sgo, I had lost hope snd reduced quslity of life until I was visiting relatives in Michigan and got very sick while there and was sent to a Beaumont Allergy Clínic in R.O. who referred me on to went the not for Profit University of Michigan. I was then sent on to 3 More specialists and got a diagnosis very quickly. After seeing múltiple for profit doctors
the not for profit university bases medical care changes my life for better. I was put on a simple over the counter régimen that changes my quality of life immedistely.
Is inexpebsive and liftwd an eleohant off me the chronic fatigue ais much better.. Noww i can function and not stay in isolated at home Low quality of life condition because of múltiple chemical sensitivities. I Aldo had 2 doctor's show me am allergy mapa and told me yo move south which changes my entire life from being hedridden October to May from E.B.V. as they figures iutbmy trigger was the cold, damp winters. I thrivr in the heat instead. So I took my life back! After being so well treated there in Michigan, I was sent yoban allergist immunologist. He recignized what I had and instead of extensiva testing he said lets try a treatment plan and see how you do. It's changed my quality of life. I returned home I saught out another
local university for follow up care at Not for Profit Center to help figure out the other problems I was having like enlarged and fistended gut. I then was went to the liver and hepabillusry specislust , was actually viven another diagnosis as am enlarged liver which is reversible through dieta .mediterránean planta bases not vegan diet.. I was golf it was from tylenol used yo control my R.B.V. in winter months severe fevers, now instead i use ice instead of tylenol. They gradually got me off all the asthma and allergy steroids docs put me on. I found for Profit docs put me on meds which causes horrible side effects Made me sicker then the symptoms for taking them. Steroids also gave me cushings syndrome, which add unusual weight to your upper body. i got off all steroids except docs say I may need for emergencies and took my life back and my body slowly returning. Energy returning, and can exercise now and gone down 3 sizes just by rating half my plate Cooked Green mixed veggies snd other half cut in half lean protein & starchy Veggie. Use smaller plate for portion control…which helps tremendously. The noderste exercise helps w fatigue snd brain fog. Hubby got me an auto Matic peddler u plug in can sit and peddle. It really helps a Lot with Braun fog and fatigue . Fighting the inactivity all these health issues causes really make a diference, ser small goals a few times a week then add More days put on some upbeat música to peddle to and you will feel better….

I just got the the fodmap the app really helps me make better choices to feel better too. Which helpee me choise the better veggies for med. diet, the good Is do good..my hubby found a Cuisinart griddler Is a gane chsnger grillimg veggies tastes way better and do Easy..I found i had to cut out dairy & corn and sugart drinks swapped out for water and lemon.. Aldo gut doc told me low fat Activia yogurt kills the accumulation of bad bacteria in gut along w certain fermented foods
& stromg probiótics suplementos try Swanson.com had Hugh quslity but inexpensive choices which has eased my stomachs distensión.
which i realized by talking to pharmcist and reading insert Pagés of side effects of meds I was prescribed. Pharmacist helped me Sort out symotoms and side effects too.
Because if these positive diagnosis at not for Profit university teaching hospital medical centres I foundca way better quality if care. Maybe it would help you too. They so Easy to real with, and very caring take More Time as they patient driven not Profit driven. As long as I stay in warm climate my E.B.V stsys in remissión. When cold weather I avoid travel back tisee relatives up North the cole or E.B.V. triggers on on w a vengeance. Docs say my En.B.V. Is could mediantes.. also found done supplements help during cooler remos to keep e.b.v. at Bay one works for me Is lysine. (There are others, you can resesrch, might help.) We went for Vk to try out first which southern ststes Warmer climate was better for me before moving. We got an RV and traveled diferentes Places in winter to see where I felt best then relicated. Was a game chsngercand I took my life back. So dont give up, answered areboug there but it really matters whose advice you week. Not for Profit instead of for Profit deriven carecwas another game changer for me also. The diference
Is correct diagnosis and a team of
Qualified health profesionals willing to work together to help me Sort out my various problems one by one I Also ended up w gall stones which was why i had constant pain you describe in back and gut etc. Now I have a manageable health condition, and they follow up by telehealth which is do convenient saving gas & hassle all my specislists work together and are on Speed dial
or email ready to talk & help me with my questions without waiting forever for appts.etc.

hope this helps you are too young to give up …you just need find right place to get answers. Hope you feel better soon.

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@lioness2001

Hi! What's a functional doctor? Thanks, Jeanne

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Linda- Examples of functional medicine include acupuncture, naturopathy, massage, chiropractic medicine, osteopathic medicine, body movement therapies, tai chi, and yoga.

I am not sure if this is science-based because the concept was developed by a group of "thinkers" and not scientists. That's not to say that it doesn't work
https://www.bridgeshealingcenters.com/integrative-medicine-vs-functional-medicine/

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Allergy testing has been suggested. Lioness mentioned enviromental testing for allergerns like mold, dust, pollen, cats and more. That is a simple 30 minute prick test on the back and for those types of allergies shots can help treat it.
I've had hayfever all my life and this test can even diagnose what type of grasses one is allergic to.
Your lungs may be inflamed because of allegens.
My biggest misery was inside my skin. Turns out I had 2 issues going on- chemical/natural element allergies and also diet- processed sugar feeding my internal yeast. Mind you I had no visible yeast issues.
My internal inflamation was raised by exposurer to all the hidden chemicals and elements we contact: preseratives in topicals like lotions, dish soap, grooming products and metals and acrylics, and blended fabrics like elastic, poly/cotton and elements in rubber and so many more. The test for this is the 5 Day Extended Patch Test, Google what this is about. Many, not all, dermatologists are licensed for this test, most allergists are. You may not even have external skin issues, your inflamation was be inside you body. Look up True Test Kit for this 5 Day Extended Patch Test. It is a common brand and the one I had. I was tested for about 80 elements.
Like you I've always known fragrance, good smeling or bad smelling affected me. I get a headache 1/2 a mile away from a diesel vehicle ahead of me in traffic, I know it's up ahead, before I see it and make sure my car airconditioning outside air entrance is closed off. I can't go into a store that sells tires because I get a spliting headache within a 30 seconds. Just the odor from the rubber, I get a rash from rubber contact. Rubber and elements of rubber are hidden in many of our contacts from floor mats, protective gloves, blended fibers like elastic and hundreds more. Most perfumes give me the same reaction, they make me sick, headache is the most immediate issue. I can't go into a home burning scented candles or a Christmas store full of cinnnamon fragrance. My 5 Day Test verified my allergy to cinnamon and to rubber. I had to give away my glorious lavender plants in my gardern because I got tired of holding my breath just walking by them, my reaction to their fragrance was that fast. Testing gave me the ability to avoid my allergens and learn where they are often hidden.
My second suggestion others have also mentioned. Diet. Give up processed sugar and limit natural sugar. Read The Yeast Connection Handbook by William Crooke, MD. The detox period is brutal, giving up carbs and sugars, after that the maintanence plan is doable. I learned I can eat gluten once or twice a day. It's the processed sugar which is yeasts favorite food. An overload of the yeast, which lives in our intestines, poisons us with their waste products by raising our histamine levels. Histamines raise inflamation. All is explained in the book, it's available on the internet. I've been off processed sugar now for at least 5 years, it's the best sacrifice I've ever made. It's not easy to give up sugar, it will take about 6 months of abstinance to begin to not crave it. Tell yourself when you want to grab for a sweet, "When will you learn, it's going to make you burn" then walk away. My desire to live pain free motivated me to make this sacrifice when my body was screaming at me for sugar.
Another testimonial from my sister who was in a brain fog for years, for example she'd find she walked blocks from her house and couldn't remember how that happened. For a 45 year old it wasn't dementia. Turns out she was allergic to MSG, which was more common in food years ago. She also did a detox diet and then maintance plan similar to the one I did and stuck to it for a year but now eats normally,though still off MSG and has had no issues for years. Personally I will never trust sugar again and know what chemical allergens to avoid for life.
You are desparate and will loose your mind if you don't figure out what is causing your health issues. I was at the point of suicide because I couldn't tolerate my internal pain any longer. I couldn't get more than a few hours sleep at night because of the burning and stinging inside my body. I'd get up every morning knowing the hell I would be facing again and again and again. I couldn't go on this way.
I became obsessed with the internet and spent hours every day on sites like this searching for answers. Be a warrior and fight for your health. I was. None of my recommendations will make your health worse, if you are as miserable as many of us have been you will give these suggestions a try. Please keep us posted on what you will try next.

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