Update

[castronovo112587]

Hello all. It has been a while since I have been on here and I wanted to make sure I come back here and share my progress and what I did to help give me my life back. I joined this forum about a year and a half ago after about 6 months of very severe daily symptoms I was having after giving birth to my 2nd child. I already had a pretty extensive health history as I had carcinoid cancer previously in the past but had been cancer free for 5 years. Pretty much after giving birth to my daughter in June 2013 I started to have a wide array of scary and debilitating symptoms within a couple of days after the birth. I was in and out of the hospital, I was having chest pains, trouble breathing, a severe headache for weeks that just would not go away, crazy blood pressure fluctuations, I was constantly dizzy and foggy headed, flushing episodes, I couldn't get up and do much of anything around the house because I would feel so dizzy and out of breath and I was getting palpitations constantly and my whole body was in pain and I felt like I had the flu everyday but I wasn't sick. They had put me on Beta Blockers due to extremely high blood pressure and high heart rate (but then my blood pressure would bottom out and get too low) the Beta blockers made me not able to breath and my symptoms even worse. I started doing a wide variety of testing to see if they could figure out what was going on. Everything was turning out okay, so eventually the discussion moved to my carcinoid being back because carcinoid syndrome just so happens to have the same symptoms as pots. My cancer doctor seemed sure I had some residual carcinoid somewhere due to my intense daily symptoms. I went to see a Carcinoid specialist a couple of hours away at a big cancer institute and was certain he was going to say that my cancer was back. I went over all my symptoms with him and had done previous blood work and urine to test for carcinoid syndrome and to my complete surprise he said he was pretty confident my cancer was not back because my numbers were fine and I wouldn't have such intense symptoms without it picking up in my urine and bloodwork, although he would do further testing just to make sure. He then said he believed I had an autonomic dysfunction called pots based on all that I was telling him and that I needed to get a tilt table test. So I did an octreoscan and ct scan and repeat blood work and urine and sure enough there wasn't any carcinoid back. My next step was to get a tilt table test which was performed and sure enough it was positive for pots. Meanwhile I had also gotten tested for food allergies and wheat, soy, eggs, milk and peanut popped up as well as environmental allergies. I was absolutely miserable and pretty much homebound and going through the toughest time of my life. My body was overly sensitive to everything and any medicine I would take would make me feel a million times worse. My diagnosis was a follows: Pots and fibromyalgia. My thyroid numbers were off as well pointing towards hyperactive thyroid but I no longer have insurance and haven't gotten a chance to have it fully checked out. After months of being in and out the hospital and feeling miserable all day everyday I found this forum and it gave me hope and it was a relief to talk to people going through the same thing I was with the same symptoms. I want to share with you guys what I did that worked for me and helped me feel wayyyy better. Once I received the paperwork on the allergies I decided to change my diet(I had an absolutely terrible diet including fast and processed food) I cut out wheat, dairy, soy, eggs and peanut(due to the nut allergy) I also stopped eating anything with preservatives, GMOs and msg in it. I adopted a completely healthy diet made from real ingredients without any of the bad stuff in it. It took some time to see a change about 2-3 months but I slowly started feeling better. My brain fog was disappearing, my pains all over my body were becoming less, my headaches becoming less, palpitations becoming less frequent and I felt like I was starting to get my life back. I also was making sure to eat more potassium and increased my salt intake. As I started to feel better I was able to start to be more active. Beforehand I was pretty much housebound and struggled to maintain even the smallest chores around the house. As my symptoms started improving I was able to get out and go to the grocery store and start moving around more and becoming more active which in turn started to help condition my heart back to a more normal state. I started to work again part time and if I was feeling out of it and having symptoms I was able to sit down in the office and rest or leave early. I just kept slowly improving more and more. Now today after a year and a half of changing my diet I would say I am 85-90% back to my old self again. I now am very active on my feet for hours at a time. I can go out with my family and have fun at the park. I can go out with my friends dancing at night and even have a couple of gluten free beers and feel ok. I of course still cannot go out running a marathon or do hardcore workouts. But I can do some treadmill at a nice steady walking pace for 15min and some biking at the gym for a few minutes as well(this is only recent within the last 4 months) prior I did no excerise and just stayed active by walking around and doing errands and just being on my feet at work. My heart rate used to be about 120-130 prior to now with me just sitting there not doing any activity. Now being up and around on my feet it will be 85-90. My brain fog is completely gone, pains only from time to time and way more minor, headaches only come now during that time of the month due to hormonal changes, palpitations are only every once in a while and very shortlived and I do not get short of breath anymore. I wanted to share this with everyone because I remember how down I was a year and a half ago and how I felt stuck and like I was going to feel this way every day for good and never feel better and have my life back. I am not a doctor or medical professional but this worked for me and wanted to share with all of you. If you are interested in doing a fully clean diet(no GMOs, msg or chemicals) and cutting out the wheat/gluten, dairy and soy(which are,known to cause symptoms in people who have sensitive bodies) I just want to say that you have to be very strict and completely stick to it and give it time to work. I still keep up with the diet today and I eat a wide variety of foods that are very tasty and make 90% of my meals at home and if I go out to eat it is only at a restaurant that can make me a special meal for my dietary needs. I also cut out the red meat and pork and just stick to chicken and turkey(without antibiotics and steroids) this wasn't a big deal to me as I never cared for red meat beforehand. Obviously you should not cut anything out of your diet before talking to your doctor first. All of my vitamin and mineral numbers are fine and my iron numbers are actually better then they used to be. I want you all to know that I enjoy my diet and it is not something that I have to struggle to do. As I said I eat a wide variety of foods and eat good everyday. I am so glad to have my life back and wanted to make sure that I came on here to share my update with you and share what worked for me. The reason why I think changing my diet worked is that when you have pots your body is oversensative to everything: smells, medicines, when you get sick. So it makes sense that your body would also be oversensitive to food and react if you are eating genetically modified foods, msg and other chemicals in most grocery store food. If I would break free from time to time a few months back and eat msg or GMOs my body would react and I would get the headaches and dizziness other symptoms. Basically, by me changing my diet my symptoms started to improve which then led to me being able to be more active which then helped with my heart rate and helped condition my body back to a more normal state. Sorry for the long post guys. Just wanted to share this with you.

[Katybug]

Hi Rosey,

So glad to hear that you ate doing better!

Katie

[targs66]

Thanks so much for your post, Rosey. It's so encouraging to hear that people improve. I've thought about trying to do an elimination diet for ages and haven't gotten around to it b/c I just feel so overwhelmed by day to day life, even tho I do very little. You've given me more incentive to try it.

Huge congrats on getting your life back!

[SarahA33]

Hi Rosey!

Glad to see you are back with a great report! I'm so glad that you've found what works for you!!

Continue to take good care of yourself

Sarah

[Krista3]

Hi Rosey,

Thank you for sharing this! I've just been diagnosed and I find this extremely helpful and encouraging!

Krista

[Psalm 23]

Hi Rosey,

I'm so glad you have realized such significant improvement with changing up your diet. I hear you on this one. I also subscribe to a very clean diet and have noticed how huge of a difference it makes. Thanks for sharing and encouraging others with your success.

Janet

[castronovo112587]

I am so happy to share this with you guys. If anyone has any questions I am here. Thanks for the kind words!