Hi all! I just returned from a refreshing walk outside. The weather has warmed up here in PA and its nice to have some "me" time out in the sun. Hoping it helps boost my vitamin d too.
Monday was a long day of doctors apps and I havent gotten to update you yet. I saw my primary and a neuropathic. 1st time with the neuropathic and I was overall happy. He agreed for me to cut out wheat for the most part. He suggested only sprouted wheat. Don't know a whole lot about that other than seeing it in refrigerator aisle at store. I think I will just stick to no gluten. He also said with my digestive issues to cut out dairy so far I have managed and it actually hasn't been as bad as I thought. Cheese and yogurt are the main things I miss. And he also said no peanut butter, not sure why on that one but I'll give it a try. With all of these restrictions I haven't cut out soy completely yet. Mostly I am only eating fruit, veggies and no processed foods so I am staying away from a lot I think. He also suggested poultry like gotta ski. I really didn't want to do it, but if I'm going to get better its worth a shot. I had about 4ozs last night. Wasn't pleasant but we'll see.
The neuropath seems to think a lot of my problems stem from my BC pill. I've been on it about 8 years with no problem, but at his suggestion I'm stopping. After some research I found a lot of women with bad side effects including IBS which you'd never think related. So just a thought for anyone reading this on BC, do some research! I'm hoping all these things combined start to improve my health. I feel pretty good aside from the neck pain a headaches. My primary wrote me script for physical therapy so I am looking forward to that.
The only other major concern is my insomnia. I was doing amitriptolyne but neuropath suggested 5 htp a natural supplement that produces serotonin and enhances mood, lessens anxiety etc. I had a wonderful nights sleep the first night on it, but last night I tossed and turned for hours and slept on and off all night. Going to give it another try tonight. Warning: you cannot take 5 htp with any other serotonin drug. The insomnia, neck pain and headaches are my most bothersome symptoms right now.
Have to run, but I hope everyone is well!
Wow, I can't believe so many have taken the time to respond. Thank you, thank you, thank you!
For starters, I will ask the doctor tomorrow about being officially tested. What I didn't mention in my OP was that my wedding is on April 20th and I am trying to do everything I can to get this under control before then. I realize full recovery will take much longer, just trying one step at a time. We also have a honeymoon planned for after the wedding and I would like to be able to enjoy some of it. I realize this may be hard while on vacation though For these reason, I will probably continue on the gluten free diet for at least a month to see if I have any improvement instead of going back on it in order to be tested. As much as I would like an official diagnosis.
I looked and the tuna had soy as an ingredient. The first time I had severe problems was when I ate a can of it. Friday I had dry roasted edamame (soy beans) in the afternoon and awoke at 3am, my stomach ache and burping still haven't resided. Im burping as i sit here typing! Its so weird, as this is all new to me within the last few weeks. No burping problems before then. It is probably in my best interest to drop soy as well. I never had a problem with soy before though? I eat tofu all the time being a vegetarian. A little disheartening to stop gluten, soy and meat, but as this point I'm willing to do anything to get better. Perhaps after the wedding/honeymoon I will seek testing, unless I feel so well that I don't need it.
I do think the mono plays some role in this puzzle as before then I was completely healthy. And not to give TMI but yes, tramadol gave me constipation too! I was actually wondering if my recent stomach issues were from that. Ive had to take a laxative as i am usually very regular. Today was the first day not taking it and my pain was bearable with no other bad symptoms (I was only on it a week). I still need the other for sleep as I can't fall asleep for the life of me. I want to treat my symptoms not mask them, I am a very big advocate of that. It's just so hard when you don't feel well!
Does anyone else here have a problem with drinking alcohol? This has been the case for me for about 4 years, I can't tolerate even a glass of wine, it makes me feel sick. Just curious if its related as I never found out why. In college I could drink without a problem.
IrishHeart - you give me some hope as my tight neck muscles are my worst symptom bc they lead to debilitating headaches! I am going to ask about physical therapy for my neck tomorrow. When I believed it was mono, I didn't think PT would do anything for me. Now I'm thinking it worth looking into.
Oh, and just to note, my vitamin d was the only thing that was relatively low at 33. Normal showed as 30-100.
Everyone else, thank you again! As of now, I'll be continuing on this journey and update you as to my progress.
This is my first post and my story is a little complicated so bare with me, I will try to make it short. Just looking for some feedback and anyone that experienced something similar or any advice. Little background: 26 yr female vegetarian for 5 yrs, was active before symptoms began
It all began back in July 2012. I started felling tired all the time, extremely sore neck and shoulders which caused severe debilitating headaches, brain fog, hot flashes, body aches, lightheaded etc (no stomach issues). I kept going to the doctor saying something was not right with me and kept getting the same answer, it is muscular. So I changed how I sat at work, did neck stretches, spent tons on chiro and massages. No releif. I almost passed out while food shopping so my 4th time to doctor I had done my research and said test for everything, Lyme, west Nile etc. (not gluten). My doc also ran a mono spot which to my surprise came back positive. I cried when she called because I was so relieved to have an answer and an end in sight. I was on work restrict of 1/2 days for a month. They said there is nothing you can do but rest. Very slowly I started to feel better. I wasn't myself until the end of October. This time period for me was a personal h*ll so I was so happy to have it behind me.
Fast forward to January 2013. The sore neck hit me first, then the awful headaches and hot flashes. Pretty much every symptom had returned. I was 100% convinced I had mono again. And this time it hit me even harder. I couldnt work at all, I was off work full days starting in early March with no diagnosis (chronic condition they called it) To make long story short it took me 5 visits to the docs again to get it through to them that this was not muscular and had to be mono again. They finally ran a more extensive blood test to see if mono was active currently and it was. No one could explain it. My CBC blood tests were normal. Last time they were elevated. I rested daily from early March and hardly left the house to do anything, I was told to be off work for 4 weeks and rest. I was starting to feel a little better and then March 22 I felt a million times worse. I began to notice when I felt my sickest I was burping a lot and even had some gas which always made me feel better. Usually during this time I had hot flashes too. One night I woke up with severe pain in my chest. I was so scared it was my heart. Then I starting burping and the pain went away slowly. Also good to note was that I wasn't sleeping well at all. One night I awoke at 4am and couldn't get back to sleep until 8am. Sometimes I just couldn't fall asleep until very late.
After that scare, I decided to see a diff doctor. He right away said I do not think you have mono again. Your CBC levels would be elevated if fighting off a virus and the other test isn't all accurate. He said I probably have something post viral and thinks CFS. I mentioned the burping and he didn't know what would be causing it besides a medrodose pack I had finished a while ago. I mentioned maybe systemic yeast as I have struggled with chronic yeast Infections for years. He pretty much said that was not it and doctors do not really believe in that. He decided to treat it like CFS and prescribed tramadol for my neck pain and amitriptolyne to help me sleep. He also mentioned a gluten free diet in passing. I kind of laughed it off and decided to research it some more later.
That night I took the tramadol and the neck pain was relieved significantly. I ate some tuna with pickles and a wheat frozen pizza. That night was awful. Severe stomach pains, gas, burping, chills and hot flashes. It lasted from 9pm-2am and it was awful. Something in my brain clicked and thought maybe the gluten from the pizza did it. Saturday March 31 was my first day gluten free. I also begun tramadol 2 times daily and the other for sleep at night. The week went well. I was feeling much better. Able to get up and do a few things. I didn't know whether to attribute to meds, diet, just good timing or what. The neck pain is still there when the pain meds run out so the diet hasn't eliminated them and I'm still having trouble sleeping.
Here's the kicker, I was doing very well until last night I awoke at 3am with severe stomach pains again. I couldn't pass gas or burp so I started throwing up stomach acid. After that I could burp some and my stomach was ok enough to sleep. But this morning I awoke with an upset stomach and it lasted all day (still there now) with burping and gas all day. I hadn't eaten any gluten and am 99.99% sure there was no cross contamination. The only single factor to my two worst stomach pains was having tuna that day. I can't imagine it was from the canned tuna. Right now I don't know what to do.
Do I continue the gluten free diet? I've read I can't be tested if I'm not currently eating gluten. I wish I would have been tested before going gluten free. I am also afraid if I go without eating it, I will be intolerant forever as I've read ppl have problems with the body processing it after cutting it out. I don't want to stop eating it if that is not the problem.
Do you think the mono caused a gluten intolerance? How do I know if gluten is the culprate if I've already taken it out of my diet and now had stomach problems? Could tuna be the problem? Anyone have any experience with systemic yeast? I can't find a whole lot about it on the Internet but still consider it a possibility. What else could be causing all of these symptoms? What could be causing the stomach issues? Are they related?
I am going to see a neuropathic/alternative medicine doctor on Monday as well as my regular doctor to see how the tramadol is working. He said if my neck muscles are still so tight he wants to do trigger point injections. What should I be asking these two doctors? I just want some answers and some way to get back to being normal me. I have also been tracking my food and how I feel for the past two weeks (one of them gluten free).
THANK YOU FOR TAKING THE TIME TO READ THIS! From a person struggling to gain their life back, I sincerely appreciate it!