Neuro-immune Disorder - Fibromyalgia?

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Kizzie

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Neuro-immune Disorder - Fibromyalgia?
« on: August 25, 2015, 03:53:02 PM »
I'm curious if anyone here has an auto  neuro-immune disorder as I was in to see my GP yesterday for worsening arthritis symptoms, and she thinks I may have fibromyalgia or some other auto-immune disorder (on top of everything else - seriously?!   :blink:). 

I read up on it and sure enough I have a lot of the symptoms but attributed most of them to CPTSD - sensitivity to noise, light, sound and medications; sleep difficulties; cognitive fog and headaches; fatigue; and joint/ and muscle pain, etc. 

Anyway, if you have some info on your experience I'd appreciate hearing about it.  :yes:
« Last Edit: August 31, 2015, 06:06:21 PM by Kizzie »

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Kizzie

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Re: Auto-immune Disorder - Fibromyalgia?
« Reply #1 on: August 25, 2015, 03:55:45 PM »
I just searched it on this site and see that others do have it.  Here's an interesting link about trauma and FM - http://journals.lww.com/clinicalpain/Abstract/2000/06000/Prevalence_and_Impact_of_Posttraumatic_Stress.6.aspx.  Yup CPTSD is the gift that keeps on giving.  :fallingbricks:

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Dutch Uncle

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Re: Auto-immune Disorder - Fibromyalgia?
« Reply #2 on: August 25, 2015, 04:10:13 PM »
That sucks, Kizzie.  :sadno:

Wishing you well,
 :hug:

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KayFly

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Re: Auto-immune Disorder - Fibromyalgia?
« Reply #3 on: August 25, 2015, 05:53:17 PM »
Sorry Kizzie  :hug:

I knew a lady who had a really bad case of it which seemed to be quite painful. It doesn't sound like you are at a bad stage of it, if you have it, so hopefully you can do something to help it early on.

So, lately I have been doing a lot of research on juice cleansing. I'm on day 3 of a juice cleanse right now. In my research, I kept finding cases of people curing themselves of cancer and other incurable diseases, just by drinking carrot juice, only carrot juice, for a certain amount of months. Below is an article about an amazing man who cured himself of cancer and another incurable disease JUST by drinking carrot juice, and he died of old age, not disease.

So I've been juicing a lot because, I have a lot of emotional toxicity too, which sometimes manifests itself into physical disease. I find that when I do cleanses, I cry a lot, and much becomes clear to me. 

Some people say that juice "fasting" or cleansing is really hard, but its not, you get to drink all the juice you want, you never go hungry, and it's a little expensive (gotta buy a juicer), and lots of produce, but I have watched my weight drop and my health increase immensely since I have been doing juice cleansing.

Its just one idea. But here's the article...

http://www.drfostersessentials.com/store/juicing.php#sthash.TE05rB8G.cW9kUhxA.dpbs

I hope it gets better for you. Try to stay as relaxed as possible  :hug:

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KayFly

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Re: Auto-immune Disorder - Fibromyalgia?
« Reply #4 on: August 27, 2015, 05:52:31 PM »
Did you find out more Kizzie? Thinking of you.. :hug:

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Kizzie

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Re: Auto-immune Disorder - Fibromyalgia?
« Reply #5 on: August 27, 2015, 08:50:58 PM »
Thanks for asking Kayfly and the info on juicing, and your well wishes Dutch Uncle   :hug:

I have been reading a lot and the first thing I found out is that it's a neuro-immune disorder as opposed to an auto-immune disorder so it involves both the nervous and immune systems. I can certainly see why anyone with CPTSD might be susceptible. When you think of all the stress hormones/chemicals continually flooding our systems over time, it's no wonder our nervous and immune systems end up compromised. 

I finished filling out the 5 page questionnaire my GP gave me and I guess between that and the buckets of blood, she will rule things in/out, and we will go from there. 

I am fairly calm now that I've digested the news a bit more. It's much like when I found out I had CPTSD, an initial sense of shock and then a sense of relief because I finally had a name for what was going on.  And that meant I could move towards management and healing.   

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KayFly

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Re: Auto-immune Disorder - Fibromyalgia?
« Reply #6 on: August 27, 2015, 09:58:37 PM »
That makes a lot of sense Kizzie. I have also had many immune problems that have seemed to be stress related in my life, and I am beginning to tackle now.

I'm glad you are staying as calm as possible and doing everything you can now to stay on top of it. I hope it gets better, or is just not there.

The info I gave you on Juicing is SUUPER long, but I think towards the end of that article is where that MD talks about the one case of a man curing himself of cancer and another disease by just drinking carrot juice. I cleanse here and there to keep up my immune. It works well, alongside probiotics and digestive enzymes.

Thanks for the update! Sending good vibes your way! Take Care!

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Dutch Uncle

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Re: Neuro-immune Disorder - Fibromyalgia?
« Reply #7 on: August 30, 2015, 06:32:10 PM »
Hi again Kizzie,

In a strange example of coincidence, one of my friends who I spend this weekend with, also 'confessed' she was suffering of this decease. So you're not alone in this.

We didn't talk in depth about it. So I have nothing additional to offer. At this moment at least.


What might give you a smile though (if you would even want one) is that she brought it up in the Trivial Pursuit-style-game we use to grab/give away presents with the question she posted: "What decease I suffer from in silence, and really don't want anybody to know?"
(off course some people present knew the answer to that (and to one of those she posted the question), but more did not)
I did ask what this "Fibromyalgia" was, and when she explained suddenly realized: "Whut? Kizzie!"

Take care!
 :hug:
« Last Edit: August 30, 2015, 06:45:09 PM by Dutch Uncle »

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Kizzie

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Re: Neuro-immune Disorder - Fibromyalgia?
« Reply #8 on: August 30, 2015, 08:21:38 PM »
That's interesting Dutch   ;)   I wonder why she has been silent about it?  Neuro-immune disorders have had a bad rep in the past but seem to have gained acceptance in the medical community.  That said, I don't know about publicly. Perhaps like Chronic Fatigue Syndrome and Gulf War syndrome it's still associated with laziness, weakness, defects of character.  PTSD was in much the same boat  and is now widely accepted so perhaps there is hope for CPTSD and FBM. You did say there were others who knew what your friend meant so if that's any indication, brighter days ahead perhaps?  :sunny:


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Dutch Uncle

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Re: Neuro-immune Disorder - Fibromyalgia?
« Reply #9 on: August 31, 2015, 09:18:03 AM »
I wonder why she has been silent about it?

I don't know. Possibly for a part out of general shyness? Possibly because the decease is not well understood, so one ends up try to explain (JADE) what it's all about, and one has to draw a blank, since that's all there is to 'offer'?
I have often that feeling when I talk about my issues...

In any case, I got the impression that the game-setting was a 'safe' time to bring it up. I did burst out in laughter by the sheer phrase "that I don't really want anybody to know" when there were eight people present, LOL.
It was definitely not a 'time' where a lot of questions would be asked, a lot of information had to be shared… The 'show'/game had to go on. And she was well aware of that. She had a big  ;D on her face.

Half of the 'crew' has a medical profession, so they picked up fast what was the problem. I had to ask.

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Lifecrafting

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Re: Neuro-immune Disorder - Fibromyalgia?
« Reply #10 on: August 31, 2015, 10:31:27 AM »
Well dang it Kizzie.  That just... pfff! I don't know - yeah, what Dutch said.
There's a journey ahead but at least you can put a name to it now, offering some sense of relief in that there's a course of action to take   

I'm of the mindset to create wellness through food; as KayFly said, juicing is a tremendous way to assist the body in cleansing toxins and nurturing the very cells that create life for us. it's a good deal! I juice most every day, eat a lot of raw foods and drink things like ginger tea which helps with inflammation.

I was diagnosed with Systemic Lupus in 95? somewhere in there... Anyway, I thought "what is the point in trying?" because I watched a woman die (horribly) with SLE so I figured what the *, you might as well write yourself off. And I did. For a year, I couldn't get out of bed.
But then I got out of bed. I decided that it wasn't going to happen this way, that I had a family and a business to run and besides, I want to travel; if I was dead, I couldn't do that....Right??? So. On with it. It wasn't until 2011 that I ditched the Celebrex and I'm not symptom free at this point but a whole lot better. I believe in the power of loving the body with healing thoughts (this part is hard for me but I do my best) a can do attitude and good nutrition. For me, when I work it, it works for me.

Going back to the ginger... its my "go to" analgesic for arthritis symptoms because it deals with inflammation which then helps the pain. If you can make tea, that's a great way to do it, either hot or cold but when pain is bad, hot is best.  And it works fast !Maybe it could help you.
Oh! And the power of an Epsom salt bath works wonders for muscle pain too!

You take care of yourself Kizzie and have a lovely day!  :hug:
« Last Edit: August 31, 2015, 10:50:34 AM by Lifecrafting »

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Kizzie

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Re: Neuro-immune Disorder - Fibromyalgia?
« Reply #11 on: August 31, 2015, 06:34:42 PM »
Quote
I did burst out in laughter by the sheer phrase "that I don't really want anybody to know" when there were eight people present, LOL.

Yes, have to admit I chuckled about this also.  I also felt a bit envious that she felt safe enough to bring it up within a group context. Even if the game was focused on sharing personal info. I'm not sure I would bring up CPTSD or FMB.  I love the fact that she had a big smile on her face. 

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Half of the 'crew' has a medical profession, so they picked up fast what was the problem.

Well that too is good to hear (medical professionals got it right away), and maybe that's also part of why she was open (she knew they would get it).  My GP admitted that if you have "emotional difficulties" medical professionals will often default to that as the explanation for an array of symptoms.  Fortunately she knows I have been steadily recovering from CPTSD so didn't go there and in fact seemed to have a light bulb moment as we were talking that something else may be at play relating to the stress of CPTSD.

I know what you mean about discussing CPTSD (and now for me possibly FBM), I'm not comfortable with the blank stare or the raised eyebrow, and a part of me really doesn't want to expend the energy explaining any of this - it is complex afterall lol.
« Last Edit: August 31, 2015, 06:41:22 PM by Kizzie »

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Kizzie

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Re: Neuro-immune Disorder - Fibromyalgia?
« Reply #12 on: August 31, 2015, 07:02:29 PM »
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There's a journey ahead but at least you can put a name to it now, offering some sense of relief in that there's a course of action to take.
 

It's a mixed bag that's for sure lol, relief that I may have an explanation for my health issues/symptoms, and depression and anger that I have worsening OA and now possibly FBM. Heck I was just getting used to having CPTSD.  ;D

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I was diagnosed with Systemic Lupus in 95? somewhere in there...
 

I am so sorry to hear this Lifecrafting  :hug:  I didn't even know what Lupus was until I started reading about neuro-immune disorders.  I have to admit to similar feelings as you (writing myself off because I do feel like I am 80; I'm just a year shy of 60).  This too shall pass I suspect, but I think I will look for a FBM forum if/when I get a diagnosis as I could use some support from those who have been through these feelings.   

I have never been much on nutrition -- part of the problem I suspect or at least it doesn't help --- but I keep seeing posts here from members like you who did turn to a healthier way of eating and have had success so I am becoming interested in looking into these avenues. 

Thanks so much for your hopeful post, it was uplifting :yes:


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KayFly

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Re: Neuro-immune Disorder - Fibromyalgia?
« Reply #13 on: September 04, 2015, 02:49:44 AM »
Hey Kizzie,

I recently attained adult onset asthma, and have been researching what I can do to reduce asthma episodes. I've decided to take on the Paleolithic diet along with supplements etc...

I order spices from a place online called FlavorGod which is Paleolithic, no salt and no calories (and really yummy)...and I did that before I even knew what Paleolithic diet was. But I researched, found out it's factoring out refined sugar, bread, gluten, cows milk etc...its mostly fats, oils, vegetables, fruit and meat and nuts...

I just ordered 2 digital cookbooks from Flavor God and I was reading that the Paleolithic Diet Reduces pain from autoimmunity because of the limitation on harmful ingredients, colors, preservatives, etc so I thought of you.

I know you are facing something in that area, and if this diet were something you were interested in, after some research or whatever, I would be happy to send you 2 digital recipe books for paleo with super yummy meals.

Thinking of you. Hope all is well.

K

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Kizzie

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Re: Neuro-immune Disorder - Fibromyalgia?
« Reply #14 on: September 04, 2015, 05:30:31 PM »
How kind of you to offer KayFly I appreciate it and will certainly keep it in mind.  I haven't actually been diagnosed yet, I see my GP for lab results in two weeks and will go from there.  I do see a change in nutrition on the horizon for me regardless though.  As I lift out of the emotional side of CPTSD I am realizing just how much of a toll it has taken on my physical self and that I must get onto this side of things as well and I may well be back to take you up on your offer.

Have you found that it has made a difference in your health?