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:
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:
That sucks, Kizzie. :sadno:
Wishing you well,
:hug:
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:
Did you find out more Kizzie? Thinking of you.. :hug:
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.
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!
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:
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:
Quote from: Kizzie on August 30, 2015, 08:21:38 PM
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.
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:
QuoteI 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.
QuoteHalf 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.
QuoteThere'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
QuoteI 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:
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
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?
Kizzie-
Of course! :hug: I know you don't have a diagnosis yet, and I'm sorry about that...it can be so frustrating to not know whats going on.
I have made major changes in my diet this year and have lost about 20 pounds, and haven't really been sick. I also had to get a tonsillectomy in at the beginning of the year (tonsils were always making me sick), but then the diet and supplements like probiotics and a multivitamin have helped immensely. I used to get sick all the time, I was lethargic and lazy, but once I started eating better, and juicing frequently, I was more motivated to exercise and have been getting healthier all the time. Never get sick anymore.
I have had breathing problems for a couple of months now and have been eating strictly paleo or gluten free for the past week and have gotten my breathing under control a bit more. Not completely, but the diet, with key supplementation and breathing exercises for me, I think I can beat this thing.
Just eating a clean diet, without harmful ingredients like refined sugar and added hormones and preservatives, is proven to improve health, and sometimes cure diseases. Paleo diet is one of the clean diets known for that. It exludes bread and lots of dairy (but not all), because (for asthma) it causes inflammation and breathing episodes, but it also is high in vitamin D which helps the body restore itself for healing...
I'll keep you posted as I go along. Letting go of pizza is my big hurdle, but I still eat a lot of yummy food, I just have to pay attention to it, because I need to be able to breathe, because athsma can actually kill you, so that's why I take this so seriously...
And also just everything I have read up on carrot juice curing several cases of cancer, has made me want to juice all the time and cleanse. Our body holds 3-8 meals at a time, so when I do a 3 day juice cleanse, it just flushes that out, which could be stored toxins, etc which is why it probably cures many types of cancer.
I'm just throwing out the info as I get it and I will tell you how the diet and supplements work for my asthma down the road when I have more results.
Best
K
https://www.youtube.com/watch?v=uXXTLf7oouU (https://www.youtube.com/watch?v=uXXTLf7oouU)
Quote from: missbliss on September 13, 2015, 09:24:41 AM
https://www.youtube.com/watch?v=uXXTLf7oouU (https://www.youtube.com/watch?v=uXXTLf7oouU)
:thumbup:
excellent TEDtalk on a correlation of childhood repetitive stress factors and physical heath later in life.
Thanks for sharing.
Thanks for this link MissBliss :hug:, she makes the science behind childhood adversity and physical health problems in adulthood abundantly clear :thumbup:
I just posted in the "Today I realized ...." forum that I am finding I am really distracted these days, and as I was writing I had another realization about just how angry and sad I am over all these physical problems that are coming up/worsening.
They are yet another price I am paying for having been abused. I've done my best to recover emotionally and have achieved a lot, so why do I now have to face life-altering and -encompassing physical problems? I do not want to be a statistic (i.e., the Adverse Childhood Events study) and yet here I am, and it is what it is. In the end I will deal with it, just wish I didn't have to.
I know how you feel Kizzie. I have been going through some physical things as well as a result of all the crap that already hurts so bad. My physical problems don't seem to be as bad as what you are going through. I'm very sorry for your pain, and can understand it can be distracting and very upsetting.
I hope that things start to look up for your health, and please continue to reach out. I'm here with you, as are many here. Much love to you Kizzie. :hug:
Right backatcha KayFly :hug: I hope you are able to get on top of your health issues soon :yes:
I finally got back to see my GP for my results and it does not look like I do have FM. I don't have all the symptoms (yay) and my lab tests came back clear (yay). So what's up with the symptoms I do have?
My GP and physiotherapist see my muscle/joint pain and fatigue as a result of severe osteoarthrtis in my knees which is making me walk oddly and is stressing joints etc., in ways that they should not be.
The rest of my symptoms seem to be CPTSD related as near as my GP and I can sort out. The "fibro fog" I had a lot of in the past relates to having EFs and dissociating, and sleep disturbances to revisiting/leaking trauma. As I recover these are decreasing whereas if I had FM they would keep recurring so yay to not having FM. The sensitivity to light, noise, temperature and smells is likely due to too much adrenaline, cortisol and so on over the years and a system that is raw and easily overstimulated.
OK, so I have a better idea what's going on now and while I am relieved I don't have FM, I find myself quite angry that after working so hard to recover from CPTSD, I am faced with physical problems because of it. :thumbdown:
:bighug: :bighug: :bighug:
i am really happy for you the results came back neg for FM; i really understand the anger too, it seems so unfair, but i hope and believe as we heal our over-taxed bodies will get the message too and improve. much support, Kizzie :hug: :hug:
Tks so much Arpy, hopefully you're right and as we offload/decrease all the stress our bodies can rebuild :hug:
Sorry kizzie, and anyone else with these painful disorders. :hug:
I think it may be a true part of this C-PTSD. I hope you can follow my thoughts, on some things that I have come to believe in my quest to be pain free.
When we keep in our emotional reactions, we keep in tension and stress. Normal cause of sore muscles, headaches, general irritive discomfort. Which, I think a person in psychic distress, thoughts do not quite trigger nerves in a sensory sense, but in a memory attachment sense. Pain in my joints always seem worse when I am dissociative, upset, and confused..I realized I had been using hyperrealization to ground me in my body...the other state being tilting planes and fog.
Reinforcement over time, could intensify. the feeling of pain, affecting the function of the mechanics. Which in turn can cause physical evidence of disease, but science and medicine cannot discern this. Though we all know pain is in fact all in one's head.
Medical marijuana, and a complete dietary change to natural packaged food, dropped 50 Lbs and for the first time ever I wear a size one at the age of 53. I walk miles without pain, and I have not had knee pain near as severe, wearing out patellas.
But I do feel "phantom" pain when my state of being is less well attached in efs, and dissociation.
Labels and the availability of so many forms of anti-depressants and pain killers looks like medicine ids in denial, I suppose the demand indicates the money is too good for them to end our desperate grasping at straws. And I am sure we all wish the answer is a simple as swallowing drugs, that are just as well termed as placebos. The mind is a powerful thing...but it has to be deceived into some things it seems.
Auto and Neuro immune for me. I have had Psoriasis since infancy but it took quite some time to get that diagnosis. I have to say that I knew I had significant trauma and possible PTSD symptoms throught my life but I always discounted it and self-medicated until 17+ years ago. then I used a 12 step program to manage symptoms. Then, Psoriatic Arthritis 5 years ago and just this year got diagnoses of CPTSD/GAD w/depression and Fibromyalgia. Ignoring my MI's has only made more somatic symptoms surface. I hope you find some relief, Kizzie. I use water therapy, aromatherapy, massage and meditation along with talk therapy. Peace.
with Fibro can you ever be pain free again?
I've been out of work and bouncing from doctor to doctor to try and figure out where all my symptoms are coming from... I'm going for a neck/spine MRI this week - but the last four doctors have said Fibromyalgia - only my physical therapist disagrees with that.
but... what then? I'm already on antidepressants, neuropathic pain meds, go to therapy, do yoga, go to physical therapy, do aqua aerobics, watch what I eat, haven't been to work in ages, go to five million doctors... but each day the pain is worse... I'm only 33. How can this be it? :( :( :( that's just it? fibromyalgia and good luck?