Autonomic nervous system dysfunction, protracted psych drug withdrawal, CFS, Fibromyalgia and why I still limit engagement on the internet

I wanted to do a follow up post on this one: Protracted psychiatric drug withdrawal syndrome, chronic illness, CFS, Fibromyalgia. Yeah, they all have things in common. 

Dan-NeufferI introduce the work of Dan Neuffer in that post. He’s done a brilliant job documenting and explaining how the autonomic nervous system appears to be of foundational concern for CFS, ME and fibromyalgia. I made the link that it’s clear that protracted psychiatric withdrawal syndromes, too, also fall into his theory very neatly. It’s worth reading the initial post and viewing Dan’s videos that are in that post. His book is excellent too and anyone wanting a deeper understanding of the issues should read it. I’ve not seen anyone else pull together so many of the issues I think about and talk about on this blog in one dynamic whole. What a joy to find it. He understands deeply how everything matters. This holistic understanding of our natures and particularly this illness, is the cornerstone to how I’m healing.  I share my healing story in the article on Mad in America here: Everything Matters: a Memoir From Before, During and After Psychiatric Drugs

Anyway, I’m bringing up Dan’s work again because in the initial post I share that it appears he was ignoring me on twitter and I imagined he was dismissing the connection I’d made between CFS and protracted psychiatric drug withdrawal syndrome (and other chronic illnesses). I was disappointed by that. I did, indeed, not hear from him for about a week. But when he did respond it was clear it was due to a twitter glitch and not my worst fantasies. He was not ignoring me. I wanted to make this clear in this separate post since many don’t read updates in posts once they’ve read it initially. Dan is a wonderful guy who gets it!

cfs unravelledI ended up talking to Dan on Skype for over an hour and was simply delighted. He truly understands this illness and the healing process I’m going through and hence he understands most protracted psychiatric drug withdrawal issues even without the direct experience many of us have with psych drugs. So, I highly recommend his book:  CFS Unravelled – One man’s search for the Cause of Fibromyalgia and Chronic Fatigue Syndrome and the Discovery Essential for You To Recover

If you need to be reminded as to how it is similar to protracted psychiatric drug withdrawal syndromes please read: Protracted psychiatric drug withdrawal syndrome, chronic illness, CFS, Fibromyalgia. Yeah, they all have things in common. 

The best part of talking to Dan, a man who has been completely well now for 3 years after having been very ill, much like I have been, is that he could tell me it was clear that I was headed down a healing path too. It’s often hard to trust that even now with all my improvement as I do remain quite ill. I was pleased, also, that I could tell Dan about  how I am exponentially (no joke) better than I was one and two and three years ago, but that I am still very sick. He understood that. So many people have a hard time understanding what that means. How can someone be so sick as to take this long to heal? This is a very complex illness.

See also: Yoga back bends: feels yummy on the autonomic nervous system

In any case, he made some great suggestions for my continued healing that I am implementing and considering. One thing he told me was to be careful with my work here on the blog as he rightfully suspected it can be draining in multiple ways. I told him how I’d already greatly limited correspondence etc. And yes that remains very important and so I’m reiterating my need to make boundaries and limits with you my lovely readers who have in so many ways also helped me heal as I’ve been also blessed to share information with you.

The last time I shared my need to keep safe and healthy boundaries for myself on Facebook I said:

Someone just inquired again about contacting me personally for private correspondence. I post on occasion about how I’m not able to do that since people often ask. I will share my response to the person today.

I’m sorry, I continue to not be available for personal correspondence. I don’t have consistent energy or reliable amounts of energy and it simply sets everyone up for disappointment. I also most likely won’t return to such open correspondence ever. I was working up to 80 hours a week when I answered all my email and comments on the blog…that’s simply not sustainable as all my work is done on a voluntary basis. So I’m sorry. I’ve learned to make healthy boundaries for myself. I wish that there was meaningful support for everyone out there. I do understand what it’s like to feel like you don’t have enough support. For more information on the necessary boundaries I’ve placed see this post: A personal note to my readers — why I’m not available for correspondence.

Basically I’m still in serious healing mode and that remains my priority. I’ve been loving having a bit of contact with readers on Facebook where I do not have messages or posting for readers enabled, but comments can be left on posts. That’s perfect and it’s lovely to re-engage with folks a bit. I was missing interacting with my readers, but I do have to limit it. So I do welcome you to “like” my Facebook page or follow me on twitter which is also another way to interact a bit.

See also:


Information and inspiration for the chronically ill

I added another tab for the navigation menu. Thought I’d call attention to it. This one is for folks living with chronic illnesses of all kinds. I was struck physically ill from the brain-injury and systemic insult incurred by long-term  and excessive (prescribed) psychiatric drug use  and the subsequent withdrawal from the drugs (iatrogenesis). Many of my symptoms are like that of all sorts of auto-immune and other long-term chronic illness. (CFS, fibromyalgia, etc) — because in fact the drugs exacerbate or encourage such manifestation.

These are articles about learning to cope with being seriously ill and also learning to heal from such illness.

This is general information and/or personal information that has been helpful to me and may or may not apply at all to any particular given individual with whatever illness you may be coping with.

The tab and the drop down menu will be permanently at the top of the page, but for ease of use for the reader I share it below as well. The drop down menu is also a good place to find many different suggestions for healing modalities. Don’t limit yourself to this page!

These two pieces are new and link a lot of everything else together in many ways although not explicitly

This page will be updated when appropriate posts are published on the blog.

Chronic Illness

Lately herbs have been incredibly helpful and I’ve been getting better!

2017: some newer articles:

See also: the “It Gets Better” Series if you’re sick and in the midst of psychiatric drug withdrawal

Being seriously physically ill can also incur trauma and lead to PTSD like issues. Having been traumatized can also make someone more likely to develop chronic illness. If you scroll down on this page the following link you will find a section on trauma and the body: Trauma infographic and links to more info too 

These are additional articles that may be helpful to people with various chronic illnesses. This is general information that has been helpful to me and may or may not apply at all to any particular given individual.

I will add to this list of articles as appropriate. Check back from time to time.

These are all permanently accessible from the drop-down navigation menu above under the heading “Chronic Illness”

New: Beyond Meds Facebook page

For a multitude of ideas about how to create a life filled with safe alternatives to medications visit the drop-down menus at the top of this page.  

Support Beyond Meds. Enter Amazon via a link from this blog and do the shopping you’d be doing anyway. No need to purchase the book the link takes you to or make a donation with PayPal. Thank you!

Fibromyalgia and bipolar — what’s the link? the drugs

July 2013: Update: I’ve learned and come to understand quite a lot more about the this now. See: Protracted psychiatric drug withdrawal syndrome, chronic illness, CFS, Fibromyalgia. Yeah, they all have things in common. and Limbic Kindling — hardwiring the brain for hypersensitivity

DRUGS FOR FIBROMYALGIA PAINThis is a repost of something I think needs to be made known more broadly. People need to be aware that if they’ve been taking psychiatric drugs for a long time it’s very possible the chronic pain they experience is iatrogenic. And before people are put on such drugs they need to be told this is yet another possible adverse reaction.

Fibromyalgia and bipolar are often  associated with one another and it’s undeniable that people with both diagnosis are common. What is not being looked at is the fact that many people develop fibromyalgia symptoms (chronic pain) as a result of psychotropic drug use and where I see it most often is among people who’ve made the connection in withdrawal groups online. It most often clears up after one is free and clean from the drugs for some time.

Bipolar Disorder Common in Fibromyalgia — PsychCentral

Many fibromyalgia patients may also suffer from bipolar disorder as well as depression.

New research suggests that just over 25 percent of patients with fibromyalgia also have symptoms of bipolar disorder.

at the end of the article is this:

The authors also point out that certain medications used in treatment of fibromyalgia may have the potential of triggering mania in some bipolar patients. ”We urge that bipolar disorder risk be carefully assessed in all patients with fibromyalgia prior to initiation of drug therapy, particularly since norepinephrine serotonin reuptake inhibitors may carry elevated risk for induction of mania.”

That is true. Antidepressants often trigger mania in people who would otherwise not have it. BUT!! Antidepressant withdrawal also, as most psychotropic drug withdrawal, triggers chronic pain in many people. Sometimes people call it fibromyalgia. So what comes first here? I’ve seen hundreds of people in withdrawal groups develop pain and recover from it once the drugs are out of their system and they have the time to recover from the withdrawal syndrome.

The drugs used to treat bipolar and depression often cause pain. Many people never realize it’s iatrogenesis, drug induced-illness, and they call it fibromyalgia instead. If a large number never figure out the meds are causing it they simply think they have another disease and rather than coming off the offending meds, end up adding even more meds to fight the pain.

I am by no means convinced there is any other significant correlation between bipolar and fibromyalgia. As long as we keep blaming things other than toxic drugs used to treat mental health issues more and more of the toxic drugs will continue to be used. It’s damn frightening.

It’s true that people with fibro develop it when they are drug naive, but in my circles I see far more people who’ve never suffered pain develop what gets called fibromyalgia in withdrawal or while taking medications. Most people never make that association.

Since I’ve seen hundreds of people’s pain resolve after successful withdrawal, this is a deeply disturbing correlation to make without understanding the role drugs play. Recovery may take time but it happens.

From the first time I posted this article, that day in the news Lilly got narrow backing from the FDA for approval for Cymbalta for fibromyalgia. The fact is these meds are being used off label all the time already. The first time I heard a story about Cymbalta was a woman I met on vacation who told me she took it to relieve fibromyalgia and chronic fatigue that predated any drug use. She ended up in far worse pain and had become ardently anti-drug as a result of her nightmare experience on it. This was 3 1/2 years ago at least and it was a random woman I met on vacation.

This is an old youtube video created by a victim of Cymbalta, Depression Hurts, Cymbalta Hurts More. The withdrawal pain has been known and talked about online for a long time. The below video, though, could be about any of the SSRIs as well as other psych drugs, all of which can cause pain as well as withdrawal syndromes.

UPDATE: my thoughts have developed quite a lot since I wrote this post. See these articles —

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