A few issues regarding fibromyalgia. Can anyone help?

I thought I'd post a new thread here, since I have a few questions for (former) fellow sufferers of fibro/TMS.
I need to clarify a few things before I can fully devote myself to starting SEP.

1) According to Dr. Sarno, TMS results from mild oxygen deprivation which can affect muscles/tendons/the nerves, etc. However, I've seen several posts in the forum that seem to stand in compliance with the 'central sensitization' point of view regarding the disease, i.e., that the problem lies in the brain itself, since it amplifies pain signals and wreaks havoc with the nervous system. It does sound more like neurological thing, especially with the multitude of symptoms that are often experienced by fibro sufferers (my own including light sensitivity, fatigue. brain fog and messed up menstrual cycles).

So is it 'mere' oxygen deprivation or the overactive nervous system? Or maybe some parts of the bain do not work properly in fibromyalgia sufferers? What's your opinion?

2) I've heard about cases of fibro in children. Doesn't that mean it can't be related to repressed emotions? What about cases in which fibro runs in families?

Shouldn't have listened to all the nocebos. Information overload can be deadly for the acceptance of TMS diagnosis.

Background info:
I think I'm stuck in the 'I-want-to-believe-I-have-TMS-but-I'm-not-sure' phase.
Fibromyalgia has been confirmed by a neurologist fairly recently.
The first symptoms appeared about 8 months ago. At first, I started having panic attacks insomnia and neck pain. Shrotly after, the pain spreaded to other parts of the body.
Prior to the malady, I was exposed to tremendous stress associated with taking care of my bipolar mother (once every couple of years she goes into a severe psychotic state). This coincided with the last semester in college as a part-time student. So, apart from having to look after my mom and working full-time, I had to focus on finishing my M.A. thesis, which was later described as 'outstanding' by the supervisor. (Does that sound familiar to anyone? Hello, perfectionism!).
Current stressors are associated with the decision about moving out with my fiance. I am not sure how my mother will take it, since I've been the only person to support her,both, finacially and emotionally. I'm also worried that severe stress may tigger a manic episode in her.

Sorry for the long post and thanks to everyone who managed to read this.

 

Hi. During my long chronic pain history(over 20 years) I saw numerous doctors and specialists. Several had told me I clearly qualify for a fibromyalgia diagnosis, but they did not feel it was a useful diagnosis. Its a chronicle of symptoms, tender spots and conditions... but from what I understand, the medical community does really know its cause, and there is no treatment or cure. All of the literature I have read is about learning to live with and manage fibromyalgia, how to avoid flare ups etc. It does not have a predictable progression and it is not life threatening. I also have known many, many people with "fibromyalgia" I am in the home care business and I know quite a few elderly women in chronic pain and they have been given this diagnosis. I almost adopted it myself because it is so frustrating to not know what is wrong, why we are in pain. I am so glad that I did not and finally decided to commit to belief that I have TMS. It not only gave me hope, but a future. Children can certainly have TMS, and TMS can run in a family just as easily as anything else. Perhaps even more so because we model how to react to things from our parents, particularly our mothers. You certainly have a lot going in your life that could be causing TMS. My mother is manic depressive and recently when my teenage daughter seemed like she might be getting depressed, it enflamed all kinds of fear and emotions. But with all the work on TMS I have done the last few years, I was able to handle it much differently than would have in the past. You can learn from this, and you can come out not only pain free, but stronger and able to handle the inevitable stressors and challenges.

 

Hi Bunneh,

I had fibromyalgia for over 20 years with all the usual associated symptoms, and also the light sensitivity you have. I overcame it by treating it as TMS. I still get occasional flare-ups due to psychological issues popping up, but I can usually get it to go away in a day or two. I think one of the most important concepts for me to remember when I have a flare-up is that it is TMS and the origin of the symptoms is psychological. Any thoughts of a physical or environmental cause for my TMS only delays my recovery.

As Anne states above, children get TMS. I started having migraines at 4 years old, which I've gotten rid of by treating as TMS.

You have a lot going on in your life to fuel TMS, but you can recover from it. It takes patience and persistence. You are on the right path. You can be successful.

 

Hi, Bunneh. Anne and Ellen have given you excellent advice and I can only echo it. You may need to work most on believing 100 percent that your symptoms are caused by your emotions and are not structural. I hope you will start the SEP. It helped me and many others.

 

Hi Bunneh! I too have gotten the fibro diagnosis, but I feel like it's just a bucket for people in pain, not a true dx. I know there are "signs" that people have fibro but to me they seem like something a brain in stress could produce (IE TMS.) I think the brain theory can co-exist with the o2 theory...the problem lies in brain processing, the brain receives an unfounded signal of pain or trauma and responds with mild 02 deprivation... I would say an overactive nervous symptom IS the "brain" not working properly! But not really the brain itself...more the signals being sent. And you can eventually tame those signals.

One thing that's been helpful to me lately as a skeptic is Norman Doidge's book describing neuroplasticity in pain patients and Michael Moskowitz (painfully unnavigable) site for Neuroplastix. It talks a lot about brain patterns and nerve firing and the "cure" is so much like the TMS program at heart, even though the reasoning is a little different. For me, it's helpful to see the more science-y explanation, even if I don't fully understand it. Then you can see WHY thinking about emotions could actually have an impact on pain.

Your brain may be trained and primed to create pain, but there's nothing "wrong" with your brain either. It's like learning something one way with a bad technique and having to break and retrain that habit.

I def had "fibro" as a kid. Kids often can't process their emotions at all because they don't have the capacity, and it expresses in symptoms. And lots of kids learn to override certain feelings from a very early age. Chronic override and mistrust of feelings creates anxiety which ramps up flight or flight and primes the brain for pain. Read everything you can about this. Soon you realize that while every author takes a different approach, it's all boiling down to one thing: pain can only be felt in your brain, and brains can learn to turn off the pain. Good luck!

 

Thank you all for your thoughtful responses.
It seems that my brain was wired for pain, due to a lot of stressful events occuring one after another. Before the fibro diagnosis I suffered from OCD for long 8 years but I got it under control with medication. After that, I developed eczema of an unknown cause which was treated with expensive ointments. That finally went away too, but soon after, widespread body pain and fatigue occured. This really looks like the symptom imperative coming into play, just as Sarno states in his books. In my case, each new symptom was more severe than the previous one.

A week ago I was in more pain than ever, almost going suicidal, and my therapist suggested a pain clinic.These words were enraging and of no therapeutic value. There are no TMS therapists in my country. Most doctors are not trained in treating mindbody disorers and fibro is not even considered a real disease. Patients in pain are often sent to shrinks.

Anyway, the last thing you want to do is learning to manage your pain. You want to be pain-free and enjoy life to the fullest.

Perhaps this is the case with fibro. I saw a video of a girl who believed she inherited the disease bacause her mother and grandmother also had it. Maybe she saw her mother's suffering from the early childhood and eventually wired her brain to react to stress in a similar manner. That's what I want to believe in, since perceiving fibro through the scope of 'bad genes' can be counterproductive.

I saw the reviews of his books on Amazon. One of them is in kindle format, so I might give it a try.
As for breaking the habit, I heard it can be acheived through exercise, however, moving your sore body from the couch is difficult. Particularily due to post-exertional malaise and the worsening of pain.

But most of the time you're pain-free, right? Most fibro sufferers define 'flare-up' as particularly bad days during which the pain is unbearable.
You're such an inspiration to me. What about your energy level? Did it increase since you started treating it as TMS? Most days, I feel as if my body was driven by a nearly dead battery. It's not helpful, given that I'm planning to increase physical activity.

 

Bunneh
It sounds like you are against medication, but sometimes big pharma can help quite down your system so u can better cope with your tms...you would use crutches if you broke your leg? I think people fail to mention how important it is to sleep to give your body a rest to shut it down so you have the energy to deal with your tms properly not always dealing with the fight or flight response!

 

[QUOTE="Bunneh, post: 56686, member:



But most of the time you're pain-free, right? Most fibro sufferers define 'flare-up' as particularly bad days during which the pain is unbearable.
You're such an inspiration to me. What about your energy level? Did it increase since you started treating it as TMS? Most days, I feel as if my body was driven by a nearly dead battery. It's not helpful, given that I'm planning to increase physical activity.[/QUOTE]

Bunneh,

I'm pain free most of the time. You're right, it would be more accurate for me to say that I have a "relapse" of fibromyalgia-type pain, than to say I have a "flare-up". I do relapse from time to time, but if I stop and reflect on what's going on in my life and with me internally, I can get the symptoms to go away. There is no doubt in my mind that it is TMS.

My energy level has improved since getting rid of the pain symptoms, but this is something I still work on.I feel, at this point, that a lot of my feelings of fatigue are a conditioned response--a habit I have to unlearn. If I'm motivated to do something, but my brain is telling me I'm too tired, I try to view that as an inaccurate message, and go ahead and do what I want to do anyway. It is the same process as one uses to exercise in spite of being in pain. You just do it anyway. Too tired? Do it anyway, is what I tell my brain. The more times I have success with this strategy, the more I'm "unlearning" my old responses. Of course, there are times when I'm not successful with this strategy, but I try not to be too hard on myself about it. I remind myself it is a learning process.

You might find it helpful to visit Dr. Howard Schubiner's website at unlearnyourpain.org There are lots of success stories posted there of people who have overcome fibromyalgia with these techniques.

Hang in there. Be kind to yourself. Think psychologically about your symptoms, and you will move toward recovery.

Best wishes,

 

Hi Bunneh! Norman's book is cool, but really just the first chapter is about chronic pain. If you're trying to save money, you can probably get the gist online googling articles about Norman Doidge and Michael Moskowitz. If you can get through the patient and professional lectures on Neuroplastix, those helped me quite a bit.

I used to be so tired I had to do my (own, single person living alone) dishes in shifts. Rest on the couch, do a few more. That dead battery analogy is so true. As is the rage at the pain that follows any physical activity. I ramped up/am ramping up my activity slowly. If it's gradual, I can sometimes "get away" with it. And, I'm no longer doing my dishes in shifts, I can clean my whole kitchen at once! I have a LOT more energy. In fact, my brain fog/tired symptoms are mostly gone, most days. So fibromyalgia CAN respond to TMS treatment. (And I bumped mine up by doing EMDR counseling. Even if my pain never goes away, I'm so glad I did this. I was suicidal too, and I feel like it's made it so I can enjoy life even with pain, which in turn makes the pain so much more bearable.)

Feel you on not wanting to "manage" your pain. I'm not pain free very often. I was against ANY meds for many years and have now learned to just take a few ibuprofen when it's really spiking while I work on my brain. It doesn't solve the pain, but it takes enough of the edge off when it's really bad that I don't "lose" a day laying on the couch and don't spiral into despair, which I think is helpful for recovery. Pain is a trained signal and I've noticed when I do take Ibuprofen, I usually hurt less the next day...far after it should have worn off....almost like it's training the pain to stop for a little while. Or maybe I just sleep better, but I feel like my TMS goes haywire with sleep deprivation.

Good luck Bunneh...we may "have" fibromyalgia, but we are NOT going to suffer from it forever. If your symptoms can get worse and compound as they did as you got more worried...they can ease and lessen as you calm your brain. It may take awhile (or not!) but we will get there.

 

Hi, Bunneh.

When I need to relax and get rid of stress or anxiety, I practice deep breathing and go to Youtube on my computer and watch a calming self-hypnosis video: "Guided Meditation for Detachment from Over-Thinking." The host, Michael Sealey, has a very restful voice and the background music is soft and lulls me into being relaxed. Before bedtime, it helps me get to sleep.

 

The conditioning is difficult to break, especially with the associated 'extinction burst'. The case with fibro/TMS is that you never know whether the worsening of symptoms stems from pushing yourself beyond the limits, or from letting go of the old patterns.
I noticed that the brain is inconsistent in creating the symptoms. Some days the light sensitivity lessens when I wear reading glasses, while at other times I'm better off without them. It's the same with the pain. Sometimes I feel better while walking, and the next day it is sitting that slightly improves the discomfort. It feels like my mind loses control over its own tricks.

As for being gentle with myself, did anyone else have difficulties with meditation? I'm not sure which direction I should take when it comes to mindfulness.
Is deep breathing enough to turn off the fight/flight response, or is it better pay attention to the pain in a non-judgmental manner (easier said than done.)?

Walt, thanks for your tip. Over-thinking takes up to 50% (it used to be near 100%) of my time everyday. I can't chase out 'the inner chatter' that keeps telling me horrible things about the future. I feel lost in thoughts about ending up in a wheelchair, losing the ability to work, being unable to ever give birth to a child, ect. Pessimism is my middle name!

Boston Redsox, I forgot to clarify that issue before. Actually, I take low doses of Trazodone for insomnia. It doesn't solve the problem but at least I can get some sleep.

 

Read Byron Katie The Works it will help with the chatter

 

Bunneh, for some reason, everything you said really rings true with my own stuff. I too, think WAY too much and the more I think of the pain, the worse it gets. For me, I have linked my OCD tendencies with the pain. Neurons that fire together, wire together, but we can untangle them. Your neural pathways are like a cornfield that a truck drives down. Since childhood, you've been driving it down the pain pathway. That record groove is DEEP. The only way out is not through, but a whole different route. The moment you notice yourself feeling the pain, FORCE your mind to think of something else. Consistent mind power to reduce my mental tension (and simultaneous physical tension) is the thing that has helped me the most. From what you have said, I can assure you, you have textbook TMS. Lastly, I subscribe to the 'central sensitization' theory of TMS. The whole entire system is overloaded, where the symptoms go is just a game of "whack-a-mole" from hell. Or from your brain, as the case may be. Don't whack the mole, shut off the machine. I wish you, and all of us, much luck. TMS is a surreal wake up call to a broken life, that probably began in childhood. We are all in this together. A rising tide lifts all boats. Let's rise by recognizing that TMS is a trickster, so we must not fall for it's wily ways.

 

Also, mine too began with panic attacks and neck pain, though when I think back to young childhood, I had stomach aches when I didn't want to go to school which turned to IBS in my 20's, depression and anxiety in my 30's, and finally full blown TMS (neck and shoulder pain) in my 40's. They are all versions of an over activated sympathetic nervous system. For the record, I do take western meds, for anxiety and depression, relatively small doses of Klonipin and Lexapro, which I will eventually SLOWLY get off of, but for now, they are making my life livable. Hope all that helps you.

 

If you look in the 'success stories' section, someone posted a new story about Fibro yesterday