I am losing hope, drs have no answers for me…
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.
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I am a medical professional, and what you describe as functional doctor is a mixture of quackery and osteopath. You can have this way better if you can become a patient at the Mayo system, because when you are with them, they look at any aspect of your health, including nutrition!. I see different endocrinologists and gynecologists at the Mayo because either one is specialized on a very specific section of their medical knowledge.
I'm not a medical professional. Just an 83-year-old who has a lot of experience with medical professionals. And who has had a number of medical issues many sounding very much like "helpwanted". I agree that Mayo is great if you can get there. But I have found that functional medicine with medical physicians has helped me a great deal.
And since my reply was to Jeanne, I had an emergency this past week and was unable to post the article on my blog regarding what functional medicine is all about as I am experiencing it. But it will be posted in the next week. As a matter of fact there will be a journal on it.
Scotty, I can relate to a lot of what you have experienced, and thank you for sharing your various/alternatives to traditional allergists and how they helped you.
I have been missing in action "mia" for the last few weeks due to some personal emergencies and am late to responding.
May I use your testimonial in my blog? Thank you again.
jazzyoldbroad.com
Hi gardeningjunkie
As I replied to Scotty above
I can relate to a lot of what you have experienced, and thank you for sharing your various/alternatives to traditional medical methods. I am experiencing the very same and similiar issues. I had to stop going to the best massage therapist I've ever had a few weeks ago because she uses fragrant oils in her facility and I was reacting to it.
I love taking baths by candlelight and have to use fragrant-free candles.
I'm experiencing some skin issues currently and have been for years, been to at least 7 different dermatologists and as many allergists. None of them have been of any help to me.
I have been on my own for most of this experimenting, reseaching, etc. I've been successful with some of my experimentation but I needed someone in the know to help me. Never could find it where i live. I think I have found someone now.
Anyway, thank you again for sharing.
I have been missing in action "mia" for the last few weeks due to some personal emergencies and am late to responding.
May I use your testimonials and information on my blog? Thank you if you say yes. I understand if you say no. jazzy
jazzyoldbroad.com
I have all those symptoms and swollen tongue on top of it. I have been to do many Drs I want to give up but can't. Did you ever find answer?
Hi,
this sounds a bit like post-covid/long covid to me, or MF/CFS.
I'd also like to mention that I too experience having trouble getting out of bed, even though I also experience the opposite of not wanting to sleep or rest.
I often deal with anxiety and DP/DR since I had a surgery back in 2018 on full anesthesia. Ever since, I haven't been able to manage crying. I just cry. I suddenly got very scared of death, life and time. I also have OCD though.
Moreover, I recently went blind out of a sudden which was accompanied by sudden energy loss and extreme anxiety. It lasted about a minute or two and happened in public.
I also have the Eppstein-Barr-Virus and was told it could be the cause for my depression. I might also suffer from Celiac Disease but I am not sure at all, it was just an assumption a doctor who also tried to rip me off had made. And then I feel bloated a lot of times, not being able to digest much fat.
I constantly feel so lightheaded and like I'm on the verge of going completely mental. It's very scary. I have trouble focusing (have ADHD tho) and I just feel like it might all be connected. Or it might be my OCD... idk.
Hi
Sorry that you have so much suffering,but let me ask if you have your hormone levels tested after endometriosis surgery? all these symptoms can come from disturbed hormones (either naturally in peri/menopause or after surgeries involving the ovaries). I have been reading a lot about menopause symptoms as I have some really bad symptoms, much earlier then usual (39) and without having any surgeries. All the symptoms you mentioned are described by proffesionals and also patients. Another thing that could be is post Covid, if you have ever had the infection. It can literally cause all types of symptoms.
Hope you find an answer and the help you need to get better soon.
Mona
Prayers sent.
I agree. I would get a hormone panel done and see if you lack hormone and then do bio identical hormone replacement therapy which is non synthetic and better assimilated by the body.
Can you please update us on how you’re doing now?