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

Posted by helpwanted @helpwanted, Dec 13, 2021


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.

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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,

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