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Tuesday, April 22, 2014

FIBROMYALGIA.

I started the day off today in tears. I mean like the sobbing, uncontrollable I hate everyone and everything tears. Fibromyalgia is a word I have feared my whole life. I know people with it and I have seen them suffer. But whether or not I accept that "label" is my choice....b/c that's what Fibromyalgia is. It's a label to classify a group of symptoms (of which every single one I have) that no one can explain or help or cure. BUT Functional medicine has something to offer conditions like Hashimotos and fibromyalgia......... they don't just treat the symptoms..they LOOK for the root cause. They dig deep. it takes ALOT of testing and ALOT of money.......but in my opinion, it is worth it if it means a CHANCE at getting my life back.

There are MANY chronic diseases that can cause the symptoms that are classified as fibromyalgia. In my case we think it might be Lyme disease and co-infections. I am not sure I have all the symptoms of Lyme but we are testing for this this week and if it is successful I will undergo a very aggressive treatment plan involving many weeks (like around 8) where I will need IV treatments of antibiotics and other functional medicine therapies to treat it. Like my doctor said, 'we want to attack it hard and fast' to have the best chance at success. This therapy/treatment should attack/address the Lyme, co-infections, candida overgrowth, leaky gut, glutathione (since I dont' really have any b/c of my double gene mutation and it's key to detoxing the body and helping with inflammation). ...and more things that honesetly I can't even remember right now b/c my brain feels like it's going to explode.
if it's NOT lyme...i guess we continue to search for what the infection is. I did test positive for chronic infection....we just need to FIND what it is.

So maybe i'm crazy for hoping for what seems like a miracle...but until today I had never heard of anyone being "healed" from fibromyalgia and I have only heard terrible struggles about people trying to get rid of Lyme...but today I met 2 people who both had a relative who had successfully overcome 1. Lyme and 2. fibromyalgia.
If Fibromyalgia isn't even a disease...it's a SYNDROME..... ( like I said a group of unexplainable symptoms) then if you can FIND the cause of those symptoms..why can't you heal it?


I want to believe so badly that God has a plan to heal me and use me to show His great power and miracles  b/c I DO believe in miracles...and I need one...the thought of living with fibromyalgia the rest of my life and not being active like I used to and not chasing my Boston dreams feels like a death sentence......so that just WON'T be a possibility in my mind quite yet.

I was quite a mess this morning and feel bad for my friends who texted me during my complete breakdown.
I am pulling myself back together and moving on in HOPE.....
I actually have to thank my doctor for giving me hope today. Evertytime I think we are close to solving this puzzle, something else emerges but i'm REALLY hoping we are nearing the end of this road...although I know in reality there will probably be more.....

As I have gone on in my research the last 4 months..I have learned that ALOT of stuff is overlooked by traditional doctors.....

For anyone who has symptoms that they can't quite explain.....please check a few of these things out...they are only a TEENSY portion  of what COULD be going on.. as I learn MORE

1. My last post gave some links to the MTHFR mutation....thats one place ot start. 5% (thats' 1 in 20 americans) have atleast one mutation of this gene. this is Worth looking into as it is connected to everything from ADD, Autism, Miscarriages, fibromyalgia, hashimotos....the list is over 300.....

2. LYME

3. HASHIMOTOS 

4. HYPOTHYROIDISM (Go to this page and start reading under "NOTES")

5. for anyone ALREADY dealing with Fibromyalgia, hashimotos, MS or other cronic diseases..look into
 "LOW DOSE NALTREXONE". It is a newer discovery....a drug that is traditionally used to treat people who are coming off heroine, alchohol or other drug addictions. It is used in small doses and taken right before bed. It helps to increase your own endorphins and has been successful in treating pain in these diseases as well as bring down anti-bodies in Hashimotos patients.
** I have been on it for 2wks with no negative side effects thus far. Generally it either works or it doesn't.
Here is one closed group on Facebook you can join to find out more : https://www.facebook.com/groups/108424385861883/

If you google it, you will also come up with lots of info.










6 comments:

  1. I'm so sorry to hear what you're going through :-( I know the uncertainty of not knowing for sure what is causing your problems can sometimes be more tolling mentally/emotionally than your physical symptoms. (I'm in the process of trying to find out the cause of my bone/joint pain and extreme fatigue. It's been 2 years and I'm finally seeing a rheumotologist next month because a blood test showed inflammation ) Lymes disease is very tricky to diagnose, I'm not saying that to discourage you, but make sure you push your Dr to do as many tests as possible if that's what he suspects. I think Lymes is what got me where I am now but after being tested for lymes 3 or 4 times I'm still not diagnosed. Incidentally, I found your blog by googling running with auto immune diseases. Know that you're not alone and I hope you get answers soon!

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    1. Hi Jackie! thank you! yes my doc plans to treat me even if I come back negative and see what happens. did you check out the links for mthfr andn have you been tested for hashimotos?

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    2. I didn't get a chance to look at those links or do research on hasimotos but I finally made it to the rheumatologist and after many blood tests to rule different things out she settled on fibromyalgia. At first I was happy to have a diagnosis but now I'm in the dark cloud of "I have to live like this for the rest of my life?" I didn't want to just automatically go on Lyrica (i'm not one for pills unless absolutely necessary) and thankfully my rheumatologist shared my view so she's sending me to physical therapy for the next 12 weeks. It's rough but I'm seeing some improvement at least with my neck and morning stiffness. I think it all started with Lyme's though too. They say a traumatic event can usually be linked to the start of fibromyalgia and I think Lymes was that event for me. Thank you for your blog though, it's nice to hear/read someone else express the thoughts in your head :-) Hang in there!

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  2. I've been following you for a long while. I've watched your journey through so much personally, spiritually, emotionally. I love how transparent you are, it's easier to hide to the world when we feel things most other people are not going through. Embracing the notion in humanity that nothing you are going through is new to humanity or to other people. I don't know, it always makes me feel better knowing that "I'm not the only one to have gone through it" in that persective this is great hope in knowing that I can get through it. That I 'm not the only "freak" out there having to deal with specific life issues. The commradery I choose to embrace; it's why it's so important to keep sharing. What I love through the trials too is to seek God deeper and deeper. We begin to ask God to change our hearts and desires. We ask for him to give us HIS ways that are always better than ours. I found when I had my eye on the "prize" God had this surreal way of bringing me back down to "him" as the prize. In that process he reveals that it's HIM that is the true goal. That once you have allowed him to grow you and shape you deeper that he will surely give you the riches of your biggest hopes and desires! He does not dis-regard your dreams Nicole! He loves them, but he loves you more. There is so much to embrace in the suffering and I wrote a blog today about suffering, I think we all can remember the living and active words of God that will help you! I'll be praying for you ! God Bless You! http://caloriecountingrunnergirl.blogspot.com/2014/04/why-we-suffer-what-suffering-produces.html

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    1. Connie!! how are you??? so great to hear from you sweet girl! thank you for your thoughtful comment...you are always so kind and thoughtful in hour responses. I will take all this to heart and head over to see you on your blog! xx

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  3. I've been out of the blogging loop for quite some time, and I wandered over here to catch up. Oh my gosh, this wasn't what I was expecting to see.

    I'm so sorry Nicole! You are a fighter and so full of talent. I know you will overcome this. Stay strong!

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