Are fibromyalgia sufferers good TMS candidates?

[Miriam G. Bongiovanni]

This post is for those who have either healed or improved for Fibromyalgia pain or for those TMS practitioners who have succeeded in getting someone from fibro to be pain free. As some of you know, I have just started out as a TMS Coach (I got my diploma as a Mindbody Practitioner, set up my website Painoutsidethebox.com, etc). I’ve helped some people with TMS already, but I have never succeeded in even convincing someone diagnosed with Fibromyalgia to give the TMS approach a try.


Yesterday it was the last straw. I had joined a Fibromyalgia group and had been supporting people and posting positive stuff for months. Almost everyone ignored my comments, and at times there was some hostility too ‘Are you saying the pain is in my head’, etc etc… So yesterday I decided to post that the group is no longer relevant to me and that I will be sadly leaving. I explained that the reason why I am leaving is that I’ve got a different mindset because I got over my chronic pain via the TMS method. I invited anyone who is interested in learning more to send me a private message in the next couple of days, wished everyone well and that’s it.

Turns out I was blocked from the group before I could even leave. This is not the first time I was met with such hostility from fibro sufferers when I was only trying to help. I think there could be 2 main reasons for this; one of them being that they were told repeatedly by professionals that there is no cure and they’ve had too many disappointments with pain relief treatments, and the other one being that all they seem to be interested in is getting their disability benefits and they are scared that the possibility of a cure will nullify their efforts. These people are constantly fighting for fibromyalgia to be recognized as a disability, and most of them are very sensitive and easily offended if you suggest a cure. What's more, these fibro support groups seem to make things so much worse for everyone because everyone is complaining about how horrible it is, asking for drug reviews, coming up with 'new' symptoms etc, and we all know how suggestible us humans are - we're likely to get a new symptom too if someone else gets it! I know it all sounds harsh but I don’t know what else to conclude - could their unconscious possibly want the pain that badly?

I am still curious though if there have been any recent successes with people who have been diagnosed with fibro and healed recently. Maybe my attempts were too ambitious, or maybe fibro patients are just not good candidates for the TMS approach. It would be great though to hear about a success story. It would also help me decide whether or not to include ‘fibromyalgia’ as one of the keywords for my website.

P.S the other people are coached who suffered from different kinds of chronic pain problems were all awesome individuals :-D

Miriam

 

[JanAtheCPA]

I know it all sounds harsh but I don’t know what else to conclude - could their unconscious possibly want the pain that bad?

Short answer: Absolutely, yes.

You probably know Nichole Sachs' work, right? She puts it brilliantly when she says (and I might be paraphrasing) that for some people, "life is a choice between what hurts, and what hurts worse".

And I'm sure you know about the strong link between fibromyalgia, and childhood abuse - physical and/or sexual - but I'll note it here for others who are reading this. So again, the answer is yes, absolutely, the subconscious brain prefers that the victim of childhood abuse be distracted (and, preferably, kept safely at home) with a life of pain, rather than face the truth about their childhood, especially the devastating truth that the two people who made a commitment to love and protect the child that they brought into the world, completely and utterly failed to fulfill that commitment. It's abandonment of the worst kind, and in many cases it probably leads to a lifetime of isolation. It's possible that the ONLY true community that many sufferers have, the only group in which they feel completely safe, is with other sufferers. Any threat to this one sanctuary is too much to contemplate.

 

[JanAtheCPA]

I am still curious though if there have been any recent successes with people who have been diagnosed with fibro and healed recently. Maybe my attempts were too ambitious, or maybe fibro patients are just not good candidates for the TMS approach. It would be great though to hear about a success story. It would also help me decide whether or not to include ‘fibromyalgia’ as one of the keywords for my website.

Have you ever come across the book Freedom From Fibromyalgia, by Dr. Nancy Selfridge, MD? You have to be careful to get the one by her - there is another with a similar title, but Dr. Selfridge was actually a patient of Dr. Sarno, and credits his theories for her recovery and as the basis for her book and program (and he wrote the foreword for her book). But it's not recent.

The problem with fibromyalgia is defining it. A lot of people on this site have reported that they were told they might have fibro, or else they suspected that they would have been told that if they had searched for a diagnosis, because their symptoms were so similar. But the reason they find Dr. Sarno, or this site, or one of the rapidly growing number of TMS/MBS resources out there, is because they reject that diagnosis. And here's the thing: at the point at which they experience recovery, can they say definitively "I recovered from fibromyalgia"? That's a real problem with a diagnosis that we here consider to be extremely vague, as well not having any physiological basis. The people who recover probably understand that the fibro community will not accept that they actually had fibromyalgia to begin with, right? So instead, as they write their success stories, they may choose to simply list the many symptoms that they no longer have, and call it good (which, of course, it is!)

I don't have a problem with this, but it does beg the question that you asked - do we even know when someone recovers from fibromyalgia using TMS knowledge and mindbody awareness?

To address your website question: it's obvious that the fibromyalgia sufferers who are sadly devoted to their diagnosis are not going to ask any mindbody practitioner for help, but I can see that it was disturbing to have been attacked by them, so I understand your reluctance to antagonize them by including "fibromyalgia" in the list of mindbody conditions you can address. How about just saying "symptoms of fibromyalgia"? I think that would be entirely acceptable, while still attracting the people who really want to do the work.

 

[plum]

@Miriam G. Bongiovanni

Have a look at @Ellen who recovered from many things including fibromyalgia. Her success story regarding that is on here. She’s not especially active here at the moment and I generally favour respecting someone’s need for space but she was incredibly generous in terms of posting so doubtless you’d learn from exploring her words. Her ‘story’ is a good place to start.

Quick edit: she was last here a little over a week ago so hopefully she’ll pick up this thread in her notifications.

 

[miffybunny]

Hi Miriam, I recovered from CRPS which is like fibromyalgia on steroids. I have noticed that most people are so brainwashed by the labels and doctors and pharmaceutical commercials (like Lyrica etc) that they cling to the label like e a badge of honor until it becomes their identity. This victim mindset gets reinforced by "Fibro Warrior "merchandise, "support groups", pain management offices and other propaganda. I have been met with downright hostility from people who read my article on the RSDSA Association website. It's disquieting to say the least and baffling to me at first. I would have done ANYTHING to speak to someone who recovered from RSD/CRPS. I was desperate for hope and it would have helped me tremendously to feel not so alone. I think there is also an element of the victim mindset occurring as well. Maybe there are secondary gains from being "sick" or "special" or "different"...all subconscious of course.

I was speaking to another member about this very issue and I think some of these groups have a lot of power in the medical industry as well. So it becomes a vicious cycle...the industry wants to keep people on these drugs and these groups band together to become "clubs" where they wallow in their symptoms and misery. I could write a book on the topic of autism and some of the groups that have power in that world as well, but I won't lol!! Part of the problem is societal and part is psychological so it's a complex issue. Sooooo disheartening though when you want to help, isn't it??? For some, the concept of pain stemming from the brain is a radical idea in and of itself!

 

[HattieNC]

My husband has had Fibromyalgia for the past 20 years so I think I bring a unique perspective to this discussion. I could write a book on the myriad of health issues Bob's had over his lifetime. I was only 22 when we married and didn't understand the toll his physical and mental health would have on our family as well as my own health and well-being.

We had a thriving business when Bob sustained a minor blow to his head that he believes progressed to Chronic Fatigue/Fibromyalgia. Six months after the event, he was bed-ridden and in such tremendous pain that we sold our business. Over the next 20 years, I became the primary bread winner in the family. He has worked sporadically, when he is in "remission." And yes, he did try to get disability and was denied a few years ago. Bob has gone from a handsome, capable businessman to a shell of his former self. I hope this doesn't sound cold or unfeeling. I feel horrible that he's spent the best years of his life chained to an illness that only exists in his brain.

I unequivocally believe that Bob's health issues are TMS. His adoptive mother was a constant worrier and hypochondriac. If my husband had a stomach ache, he was carted off to the doctor to be checked for appendicitis, a headache meant a brain tumor, etc., Bob was an only child so his mom was even more razor focused on his health. My husband was told that the family physician warned his birth grandfather not to have children because his many ailments would be passed down to future generations through his genes (he later fathered 7 kids). A self fulfilling prophecy, as we say in the south... "granddad enjoyed poor health the rest of his life." Miriam and Jan, your assessments are spot on. Three years ago, my husband confided to me that he had been sexually abused at age 5. Because the perpetrator was a childhood friend (age 12) he believed it was consensual. Even so, he carries guilt and shame.

I've tried to gently discuss TMS with Bob over the past 4 years. He's seen the change in my health but doesn't believe it applies to him. For my husband, Fibromyalgia is as much a part of his identity as his blue eyes. Sadly, I believe this is so ingrained in him that I don't hold out hope for a change. My only hope is that I can prevent this from happening to our sons. Our youngest has already exhibited a lot of his father's negative attitudes and beliefs about his family's doomed health legacy. Perhaps, informing someone about TMS at the start of their Fibromyalgia journey might yield a more positive result. Before they have spent decades becoming invested in having a rare and incurable illness.

 

[Miriam G. Bongiovanni]

It's so great to hear all your perspectives. I see that more or less we all agree on the same points. @JanAtheCPA , I've heard about Nancy Selfridge's books, but none of the people I came across with fibro have ever heard about it or even considered it. But at least it's good to know that you agree that a cure is possible - at times I do feel like maybe I am making a false claim when I say that fibro is TMS and can be healed. I won't be making that claim much anyway, but still it's good to have my personal belief validated.

@miffybunny it's awesome to hear about your recovery; yes, it is disheartening knowing that a lot of people are suffering when they shouldn't, but then I guess we have to accept that we cannot change the world - we can only help individuals who are already very willing to help themselves, and when something becomes 'big', like fibro did, it's very difficult to go against mainstream thinking. I'm only sorry for the people who are caught up in it and who may have got better if they learnt about TMS earlier. @HattieNC good idea to educate your sons early on.

Wishing you all you lovely people the best as always Xx

 

[Mamaheather]

Hi I’m new to all this and but I have found the fibromyalgia support groups to be depressing and made my symptoms worse. I am open to any way that might explain my symptoms and that will help me besides taking a pill. I have been dealing with pain for over ten years and have had every test and tried every medication or therapy. So now I believe this is me TMS not fibromyalgia or what the MRI’s say. How I came to find out all of this was by chance. I signed up for an App called the Curable and through there I found this website. So I’m doing meditation, journaling, yoga, and I’m walking my dog with the kids now. I’m still in pain but not as much and I’m managing it better. So it’s a work in progress. So I’m hoping this website and the program will help me along a little more

 

[JanAtheCPA]

How I came to find out all of this was by chance. I signed up for an App called the Curable and through there I found this website. So I’m doing meditation, journaling, yoga, and I’m walking my dog with the kids now. I’m still in pain but not as much and I’m managing it better. So it’s a work in progress. So I’m hoping this website and the program will help me along a little more

Welcome @Mamaheather! It was pure chance that brought me here as well, from a single post on a forum discussing migraines and food, because I had been advised to try the "migraine diet". But instead I ended up reading "The Divided Mind" by Dr Sarno, and it saved my life.

I'm excited that Curable brought you here, and even more excited to hear of your progress so far. We have lots of great resources, not the least of which are the posts on the Success Stories subforum, describing the infinite ways in which TMS symptoms manifest, and, more importantly, the many different ways in which people find recovery.

Keep us posted!

 

[Okcowgirl]

This post is for those who have either healed or improved for Fibromyalgia pain or for those TMS practitioners who have succeeded in getting someone from fibro to be pain free. As some of you know, I have just started out as a TMS Coach (I got my diploma as a Mindbody Practitioner, set up my website Painoutsidethebox.com, etc). I’ve helped some people with TMS already, but I have never succeeded in even convincing someone diagnosed with Fibromyalgia to give the TMS approach a try.


Yesterday it was the last straw. I had joined a Fibromyalgia group and had been supporting people and posting positive stuff for months. Almost everyone ignored my comments, and at times there was some hostility too ‘Are you saying the pain is in my head’, etc etc… So yesterday I decided to post that the group is no longer relevant to me and that I will be sadly leaving. I explained that the reason why I am leaving is that I’ve got a different mindset because I got over my chronic pain via the TMS method. I invited anyone who is interested in learning more to send me a private message in the next couple of days, wished everyone well and that’s it.

Turns out I was blocked from the group before I could even leave. This is not the first time I was met with such hostility from fibro sufferers when I was only trying to help. I think there could be 2 main reasons for this; one of them being that they were told repeatedly by professionals that there is no cure and they’ve had too many disappointments with pain relief treatments, and the other one being that all they seem to be interested in is getting their disability benefits and they are scared that the possibility of a cure will nullify their efforts. These people are constantly fighting for fibromyalgia to be recognized as a disability, and most of them are very sensitive and easily offended if you suggest a cure. What's more, these fibro support groups seem to make things so much worse for everyone because everyone is complaining about how horrible it is, asking for drug reviews, coming up with 'new' symptoms etc, and we all know how suggestible us humans are - we're likely to get a new symptom too if someone else gets it! I know it all sounds harsh but I don’t know what else to conclude - could their unconscious possibly want the pain that badly?

I am still curious though if there have been any recent successes with people who have been diagnosed with fibro and healed recently. Maybe my attempts were too ambitious, or maybe fibro patients are just not good candidates for the TMS approach. It would be great though to hear about a success story. It would also help me decide whether or not to include ‘fibromyalgia’ as one of the keywords for my website.

P.S the other people are coached who suffered from different kinds of chronic pain problems were all awesome individuals :-D

Miriam

Hello Miriam, I see this is a fairly old post and am hoping you have changed your mind re the above thinking on fibromyalgia. I read it and was SHOCKED that you pretty much state that people with Fibromyalgia dont seem to want to try TMS treatment etc!!!. I have tried an incredible array of treatments (in 30 years) and am still open to trying new things. I have been journaling and did Alan's program etc. and am still forging ahead with whatever I can glean from these forums etc. I can't see that I would be the only one with Fibro to be open to recovery - no matter how it is presented. I will check out your website and hope you have found some new "clients" with Fibro who have success stories. Cheers

 

[Miriam G. Bongiovanni]

Hello @Okcowgirl,

Thank you for posting about this, and well done for starting out on this wonderful journey! Well, I admit that when I started the thread I was a bit furious because I had just been banned from the 2nd Fibromyalgia FB support group for trying to convince people to try TMS and for urging them to take responsibility for their pain (I wasn't even trying to sell anything because that was against the rules, so I only tried to direct them to the wiki and its free program). Now I see that maybe it was too early to mention the responsibility part - nobody would like to be blamed for causing his own pain, and this is probably what caused my 'banishment' ;-)

That said, I haven't been actively targeting or seeking people with Fibro since then, although I do mention the condition on my site and blogs. I still think that it's more difficult for someone who's been diagnosed to the condition to be open to TMS, and this is not the individual's fault, but rather due to all the erroneous ideas that the individual has been brainwashed with (including that fibro is an incurable disease). What's more, I noticed that these groups' idea of support was more to share symptoms and meds rather than to empower each other with psychology (if you are on your own journey, do try as much as possible to stop talking about your pain to others - this solicits sympathy and keeps reminding your brain of how 'bad the pain can be, and therefore it's very counterproductive in TMS).

I do believe that sufferers can indeed recover completely, but probably each individual will probably have to stumble across TMS and the mindbody connection via her / his own zigzagging path, and it's unlikely for someone who's never heard of the idea to accept it just because someone on social media happens to suggest it. So since then, I've spoken to people with all sorts of pain symptoms (including fibro-like symptoms), but still never to someone who has been actually diagnosed with fibromyalgia, sadly. But who knows what the future holds?

I would really love to hear about your progress, and once again, a very big well done for embarking on this program. Try and be consistent with it, learn as much as you can about TMS and neuroscience, and you'll get there!

Best wishes,

Miriam

 

[Okcowgirl]

Hello @Okcowgirl,

Thank you for posting about this, and well done for starting out on this wonderful journey! Well, I admit that when I started the thread I was a bit furious because I had just been banned from the 2nd Fibromyalgia FB support group for trying to convince people to try TMS and for urging them to take responsibility for their pain (I wasn't even trying to sell anything because that was against the rules, so I only tried to direct them to the wiki and its free program). Now I see that maybe it was too early to mention the responsibility part - nobody would like to be blamed for causing his own pain, and this is probably what caused my 'banishment' ;-)

That said, I haven't been actively targeting or seeking people with Fibro since then, although I do mention the condition on my site and blogs. I still think that it's more difficult for someone who's been diagnosed to the condition to be open to TMS, and this is not the individual's fault, but rather due to all the erroneous ideas that the individual has been brainwashed with (including that fibro is an incurable disease). What's more, I noticed that these groups' idea of support was more to share symptoms and meds rather than to empower each other with psychology (if you are on your own journey, do try as much as possible to stop talking about your pain to others - this solicits sympathy and keeps reminding your brain of how 'bad the pain can be, and therefore it's very counterproductive in TMS).

I do believe that sufferers can indeed recover completely, but probably each individual will probably have to stumble across TMS and the mindbody connection via her / his own zigzagging path, and it's unlikely for someone who's never heard of the idea to accept it just because someone on social media happens to suggest it. So since then, I've spoken to people with all sorts of pain symptoms (including fibro-like symptoms), but still never to someone who has been actually diagnosed with fibromyalgia, sadly. But who knows what the future holds?

I would really love to hear about your progress, and once again, a very big well done for embarking on this program. Try and be consistent with it, learn as much as you can about TMS and neuroscience, and you'll get there!

Best wishes,

Miriam

Well thank you Miriam for your response. I am just amazed that after all this time, you have not coached someone with fibro. I also find this statement interesting "I still think that it's more difficult for someone who's been diagnosed to the condition to be open to TMS, and this is not the individual's fault, but rather due to all the erroneous ideas that the individual has been brainwashed with (including that fibro is an incurable disease" - because it seems many pain conditions have the "incurable" component (many back issues for example, after failed surgeries, are told their condition is not curable). I wonder what makes fibro patients different, if in fact they are.
I have had this condition, whatever it is lol, for 30 years now. I was diagnosed with fibro perhaps 15 years ago, by a Rheumatologist. I have run the gamut of trying to find my way out for...well 30 years. I don't understand why anyone would not want to try this....it is low expense and empowering - if you can do it yourself!!
I have started on the TMS treatment journey, starting with Curable, then following the Alan Gordon's TMS Pain Recovery program here, which I very much enjoyed. So I am about 2 months in now, I would say. I wish I could say I am seeing changes, but...not really lol. I am reading and watching videos, journaling, doing the work, and moving forward.
I am very much enjoying this TMS Wiki site, there is SO much to check out. Amazing really.
Anyway, thanks again for your response. I DO hope I can become one with a Fibro diagnosis that becomes a success story.
Cheers
And yes, I definitely understand not to dwell on symptoms with people etc. I actually don't talk much about it at all , outside of my home with my husband, perhaps my sister occasionally. I find most people really do NOT want to hear about it anyway lol.

 

[Miriam G. Bongiovanni]

Hey Okcowgirl,

Given your determination and will to change, I'm sure you'll get there one day. I suggest listening to this podcast by Steve Ozanich to try and see if there's any 'mistake' you may be making:
https://player.fm/series/mindbody-m...ozanichs-top-ten-mistakes-in-healing-from-tms

From my own experience with my own condition and most of my clients so far, the biggest obstacle is the way you may be reacting / behaving around pain. You can learn about TMS and how it works as much as you like, you can identify past traumas/ stressors, but you cannot get better unless you change the way you react around pain now. This means tackling any frustration, anger, and helplessness from the very start, and diffusing these emotions so that you will no longer feel them, even when pain flares up. Another thing is stopping any avoidance strategies (for example stopping to protect the pain area - stop all massaging, and try and use the affected limb/limbs normally, without this idea that you have to shield it or protect it in some way). For my part, the major breakthrough was building enough confidence to resume all the physical activities I wanted to do, and doing them without fear or expectation of pain. For as long as there's that shred of a doubt, fear or expectation that you may get pain after an activity, the pain will persist.

I hope this helps you to some extent, I really do wish you all the best!

Miriam

 

[BloodMoon]

Hello Miriam,

I was diagnosed with fibromyalgia over 24 years ago.

I believe the reason you got short shrift in posting about TMS on a couple of groups/forums dedicated to fibromyalgia is because, once diagnosed with fibromyalgia (most usually by a consultant rheumatologist) the rest of the medical profession, more often than not, treat 'fibromyalgics' as 'nut jobs' - some of them even get sent to psychiatrists, only for the psychiatrists to deem them sane.

Also, when diagnosed with 'fibromyalgia'- once the diagnosis is written on your medical notes - it's a devil of a job thereafter to be taken seriously by the medical profession. (For example, I had a problem with my eyes, which turned out to be a physical disease involving the tear ducts, but I noticed that the eye doctor I saw - who referred me to his colleague for 'specialist opinion' - made a particular point of telling her that I had fibromyalgia, but chose not to mention that I also suffer with hypothyroidism and another non-TMS disease that can often affect the eyes - It was his 'subtle' way of telling his colleague that he thought that my eye symptoms were likely to be imagined.)

Leading up to a diagnosis of fibromyalgia, many 'fibromyalgics' have suffered an extremely tough time - with their 'unexplained' symptoms not being taken seriously by the medical profession - and they are also often not taken seriously by family and friends and work colleagues and their employers. (Just like Okcowgirl, in recent years I have rarely mentioned about my muscle pain to anyone other than my husband. From experience, people tend to not want to hear about it. Even seemingly initially understanding people lose patience when you're suffering with chronic symptoms, which is another reason why some diagnosed 'fibromyalgics' flock together on dedicated websites/forums.)

So, anyway, perhaps you will now see why - because of their experiences at the hands of others to especially include many medical professionals - some diagnosed with fibromyalgia might be annoyed/upset by your suggesting that it's their brain/mind that's causing their symptoms. It's hard for them to be open minded and not consider that you are yet another person telling them that they're crazy.

It might seem counter-intuitive but, if you truly want to help those diagnosed with fibromyalgia, imo a group/forum dedicated forum is not really the best platform to advertise your services and/or mention TMS, as they are often places where fibromyalgics who have been badly treated and not taken seriously lick their wounds and want to feel safe talking about their suffering to others who have been through similar experiences etc.

However, many fibromyalgics don't just hang around groups and forums dedicated to fibromyalgia. As for myself, I belonged to a fibromyalgia group and a forum for a while, but couldn't stand it as I didn't want to wallow (with others) in my own misery. Like Okcowgirl, I'm open minded and have tried many things to improve my health over the years. I also have a lot of friends and acquaintances diagnosed with fibromyalgia who are also open minded and willing to contemplate anything within reason to improve their lot. I would say that the vast majority of fibromyalgics are like this and it is probably the minority that are not - A couple of forums that you decided to visit and post on don't represent everyone diagnosed with fibromyalgia, far from it - even if those forums/organisations might profess to represent the fibromyalgics of America or the fibromalgics of the UK or such like. So, your tarring us all with the same less than 'awesome' brush, grouping us together to single us out for criticism is imo very short-sighted. It is easy to single out a diagnosed group for criticism when in fact there are actually many people suffering muscle pain and other symptoms that are undiagnosed medically, who have just as much trouble in accepting that TMS is likely to be their problem...You only have to read many of the postings on this forum to realise that it is actually a widespread difficulty with the diagnosed (whatever 'label' their symptoms might have been given by a medical professional) and the medically undiagnosed.

If you truly want to help diagnosed fibromyalgics (and are not just after attracting clients that might be an easier challenge and fix) my advice would be to include advertising your services to them on your website - and not to single them out for criticism on forums like this one where there will likely be some members diagnosed with fibromyalgia. (The tone of your initial postings raised my hackles, even though I understood that you were writing your initial thoughts whilst feeling angry at having been snubbed.) Imo your sweeping criticism of those diagnosed with fibromyalgia shows your lack of understanding of the trials that most diagnosed 'fibromyalgics' go through - often over many years (decades in some cases) - in trying to get help and treatment for their pain. (This is not to say that others - who have not been diagnosed with fibromyalgia suffering all kinds of challenging symptoms to include muscle pain - don't also have a tough time, but 'fibromyalgics' often have a particularly horrendous time and I think it's therefore understandable that some may cling to their diagnosis, even though it could or would be in their best interests to be open to other possibilities.)

Something that made me start thinking that TMS is my problem, rather than 'fibromyalgia', was having it brought to my attention that hypoxia can cause muscle pain - as per Sarno and as described in detail in Dr James Alexander's book https://www.amazon.co.uk/Hidden-Psy...ords=dr+alexander+james&qid=1587116480&sr=8-2. Advising of this might be a 'way in' to help any diagnosed fibromyalgic who might come to your door, to believe in TMS - and you could look for other ways in, if you really want to help them. If you were to assist just one person diagnosed with fibromyalgia in regaining their health/life, I think you would be rewarded as they would be likely to recommend you to other 'fibromyalgics' who might then be encouraged to take a chance and endeavour to change their way of thinking. Sometimes things have to start small to grow exponentially.

BloodMoon

 

[Miriam G. Bongiovanni]

Hi BloodMoon,

I am sorry if my post (which I did write while I was still in a state of frustration months ago) caused offence. Through this post, the intention was also for me to gain more insight as to why my efforts in this area hadn't succeeded, which you actually provided to me today. You are right, certain forums are not the places where to introduce fibromyalgics to TMS; in fact I am no longer doing it. As in your case, some fibromyalgics will arrive at the TMS diagnosis through some other ways (I read James Alexander's book, it's really brilliant , and I must accept that going through such struggles with their medical history etc makes it harder to accept an explanation that involves the brain!

To be honest, I felt more angry and frustrated at the way these people have been treated by the medical community as well as their friends and relatives, and at the state they ended up in because of this (which you so perfectly describe), and not at the sufferers themselves. In fact, my criticism was aimed mostly at the general gist of the groups, and not at the entire fibro population. Quoting myself,

"these fibro support groups seem to make things so much worse for everyone because everyone is complaining about how horrible it is, asking for drug reviews, coming up with 'new' symptoms etc, and we all know how suggestible us humans are"... now I know why some people have resorted to these groups (due to lack of understanding by medical professionals and others, and it still makes me a bit sad).

So I see that we agree that certain groups are doing more harm than good, but then that's always the case, even with certain other conditions. At least we're lucky to have found this forum now, where we can learn from each other and regain some power over our emotions and pain.

Let me know how you're doing with the TMS approach, and best wishes,

Miriam

 

[Okcowgirl]

Hey Okcowgirl,

Given your determination and will to change, I'm sure you'll get there one day. I suggest listening to this podcast by Steve Ozanich to try and see if there's any 'mistake' you may be making:
https://player.fm/series/mindbody-m...ozanichs-top-ten-mistakes-in-healing-from-tms

From my own experience with my own condition and most of my clients so far, the biggest obstacle is the way you may be reacting / behaving around pain. You can learn about TMS and how it works as much as you like, you can identify past traumas/ stressors, but you cannot get better unless you change the way you react around pain now. This means tackling any frustration, anger, and helplessness from the very start, and diffusing these emotions so that you will no longer feel them, even when pain flares up. Another thing is stopping any avoidance strategies (for example stopping to protect the pain area - stop all massaging, and try and use the affected limb/limbs normally, without this idea that you have to shield it or protect it in some way). For my part, the major breakthrough was building enough confidence to resume all the physical activities I wanted to do, and doing them without fear or expectation of pain. For as long as there's that shred of a doubt, fear or expectation that you may get pain after an activity, the pain will persist.

I hope this helps you to some extent, I really do wish you all the best!

Miriam

Thanks Miriam. I did check out that link and did get some additional insight. Blessings

 

[Okcowgirl]

Hello Miriam,

I was diagnosed with fibromyalgia over 24 years ago.

I believe the reason you got short shrift in posting about TMS on a couple of groups/forums dedicated to fibromyalgia is because, once diagnosed with fibromyalgia (most usually by a consultant rheumatologist) the rest of the medical profession, more often than not, treat 'fibromyalgics' as 'nut jobs' - some of them even get sent to psychiatrists, only for the psychiatrists to deem them sane.

Also, when diagnosed with 'fibromyalgia'- once the diagnosis is written on your medical notes - it's a devil of a job thereafter to be taken seriously by the medical profession. (For example, I had a problem with my eyes, which turned out to be a physical disease involving the tear ducts, but I noticed that the eye doctor I saw - who referred me to his colleague for 'specialist opinion' - made a particular point of telling her that I had fibromyalgia, but chose not to mention that I also suffer with hypothyroidism and another non-TMS disease that can often affect the eyes - It was his 'subtle' way of telling his colleague that he thought that my eye symptoms were likely to be imagined.)

Leading up to a diagnosis of fibromyalgia, many 'fibromyalgics' have suffered an extremely tough time - with their 'unexplained' symptoms not being taken seriously by the medical profession - and they are also often not taken seriously by family and friends and work colleagues and their employers. (Just like Okcowgirl, in recent years I have rarely mentioned about my muscle pain to anyone other than my husband. From experience, people tend to not want to hear about it. Even seemingly initially understanding people lose patience when you're suffering with chronic symptoms, which is another reason why some diagnosed 'fibromyalgics' flock together on dedicated websites/forums.)

So, anyway, perhaps you will now see why - because of their experiences at the hands of others to especially include many medical professionals - some diagnosed with fibromyalgia might be annoyed/upset by your suggesting that it's their brain/mind that's causing their symptoms. It's hard for them to be open minded and not consider that you are yet another person telling them that they're crazy.

It might seem counter-intuitive but, if you truly want to help those diagnosed with fibromyalgia, imo a group/forum dedicated forum is not really the best platform to advertise your services and/or mention TMS, as they are often places where fibromyalgics who have been badly treated and not taken seriously lick their wounds and want to feel safe talking about their suffering to others who have been through similar experiences etc.

However, many fibromyalgics don't just hang around groups and forums dedicated to fibromyalgia. As for myself, I belonged to a fibromyalgia group and a forum for a while, but couldn't stand it as I didn't want to wallow (with others) in my own misery. Like Okcowgirl, I'm open minded and have tried many things to improve my health over the years. I also have a lot of friends and acquaintances diagnosed with fibromyalgia who are also open minded and willing to contemplate anything within reason to improve their lot. I would say that the vast majority of fibromyalgics are like this and it is probably the minority that are not - A couple of forums that you decided to visit and post on don't represent everyone diagnosed with fibromyalgia, far from it - even if those forums/organisations might profess to represent the fibromyalgics of America or the fibromalgics of the UK or such like. So, your tarring us all with the same less than 'awesome' brush, grouping us together to single us out for criticism is imo very short-sighted. It is easy to single out a diagnosed group for criticism when in fact there are actually many people suffering muscle pain and other symptoms that are undiagnosed medically, who have just as much trouble in accepting that TMS is likely to be their problem...You only have to read many of the postings on this forum to realise that it is actually a widespread difficulty with the diagnosed (whatever 'label' their symptoms might have been given by a medical professional) and the medically undiagnosed.

If you truly want to help diagnosed fibromyalgics (and are not just after attracting clients that might be an easier challenge and fix) my advice would be to include advertising your services to them on your website - and not to single them out for criticism on forums like this one where there will likely be some members diagnosed with fibromyalgia. (The tone of your initial postings raised my hackles, even though I understood that you were writing your initial thoughts whilst feeling angry at having been snubbed.) Imo your sweeping criticism of those diagnosed with fibromyalgia shows your lack of understanding of the trials that most diagnosed 'fibromyalgics' go through - often over many years (decades in some cases) - in trying to get help and treatment for their pain. (This is not to say that others - who have not been diagnosed with fibromyalgia suffering all kinds of challenging symptoms to include muscle pain - don't also have a tough time, but 'fibromyalgics' often have a particularly horrendous time and I think it's therefore understandable that some may cling to their diagnosis, even though it could or would be in their best interests to be open to other possibilities.)

Something that made me start thinking that TMS is my problem, rather than 'fibromyalgia', was having it brought to my attention that hypoxia can cause muscle pain - as per Sarno and as described in detail in Dr James Alexander's book https://www.amazon.co.uk/Hidden-Psy...ords=dr+alexander+james&qid=1587116480&sr=8-2. Advising of this might be a 'way in' to help any diagnosed fibromyalgic who might come to your door, to believe in TMS - and you could look for other ways in, if you really want to help them. If you were to assist just one person diagnosed with fibromyalgia in regaining their health/life, I think you would be rewarded as they would be likely to recommend you to other 'fibromyalgics' who might then be encouraged to take a chance and endeavour to change their way of thinking. Sometimes things have to start small to grow exponentially.

BloodMoon

Wow BloodMoon. You definitely hit the nail on the head with your response. Thanks for being so eloquent on behalf of FMS...lol. I must also admit that when I first read Miriam's original post I felt as strongly as you. But as usual, I sugarcoated it. As someone else on here said I used nice manipulation to say what I felt. I do that a lot I see. I don't want to come on too strong or offend or hurt someone's feelings.
(Obviously a good place for me to start to look more closely).
And not only did you lay it all out clearly, you gave great examples of HOW Miriam might better help these type of people. Kudos. I see that a person can be totally honest and still be helpful. Thanks for that.

 

[Okcowgirl]

Hi I’m new to all this and but I have found the fibromyalgia support groups to be depressing and made my symptoms worse. I am open to any way that might explain my symptoms and that will help me besides taking a pill. I have been dealing with pain for over ten years and have had every test and tried every medication or therapy. So now I believe this is me TMS not fibromyalgia or what the MRI’s say. How I came to find out all of this was by chance. I signed up for an App called the Curable and through there I found this website. So I’m doing meditation, journaling, yoga, and I’m walking my dog with the kids now. I’m still in pain but not as much and I’m managing it better. So it’s a work in progress. So I’m hoping this website and the program will help me along a little more

Hey Mama Heather, I found this site through the Curable site as well. I am also not on any Fibro support groups for the same reasons as you stated - it can be depressing. Not necessarily the people, just the sheer amount of sadness and hopelessness. I am seeing more positivity here, so hope I don't get overwhelmed by the posts of people NOT getting relief lol. I need to stay strong in my belief that this works. Anyway, just wanted to say Hi

 

[JanAtheCPA]

I am seeing more positivity here, so hope I don't get overwhelmed by the posts of people NOT getting relief lol. I need to stay strong in my belief that this works.

Keeping the faith is really vital when you're dealing with years of symptoms and the resulting emotional wear and tear. I can't offer much except that I am reminded about something that bears repeating (and it was probably Nichole Sachs, LCSW from whom I most recently heard this) which is that TMS recovery is like losing weight: if you consider the amount of time it took to put on the unwanted weight, it will be more effective to be realistic about the amount of time it will take to eliminate it. With diligence and work, of course, it can be done in significantly less time - but not a short amount.

The same seems to apply to many forms of TMS, which is very frustrating when faced with the so-called book cures. But those don't last. I can't tell you the number of times I've read an introductory profile from someone who experienced the book cure some time in the past - and has come back to do the real work.

Check out this post (and her book!) by member @TG957 about her long struggle with multiple horrendous and debilitating symptoms - and her recovery:
https://www.tmswiki.org/forum/threads/cts-carpal-tunnel-syndrome-crps-dystonia-raynauds-full-recovery.22242/#post-115344 (CTS(Carpal tunnel syndrome), CRPS, dystonia, Raynaud's - full recovery) It can be done!

 

[Okcowgirl]

Keeping the faith is really vital when you're dealing with years of symptoms and the resulting emotional wear and tear. I can't offer much except that I am reminded about something that bears repeating (and it was probably Nichole Sachs, LCSW from whom I most recently heard this) which is that TMS recovery is like losing weight: if you consider the amount of time it took to put on the unwanted weight, it will be more effective to be realistic about the amount of time it will take to eliminate it. With diligence and work, of course, it can be done in significantly less time - but not a short amount.

The same seems to apply to many forms of TMS, which is very frustrating when faced with the so-called book cures. But those don't last. I can't tell you the number of times I've read an introductory profile from someone who experienced the book cure some time in the past - and has come back to do the real work.

Check out this post (and her book!) by member @TG957 about her long struggle with multiple horrendous and debilitating symptoms - and her recovery:
https://www.tmswiki.org/forum/threads/cts-carpal-tunnel-syndrome-crps-dystonia-raynauds-full-recovery.22242/#post-115344 (CTS(Carpal tunnel syndrome), CRPS, dystonia, Raynaud's - full recovery) It can be done!

Thanks @JanAtheCPA , I appreciate the input and will most certainly check it out. I have SO many symptoms and it is always good to read success stories of people who overcame this type of multiple symptom situation, like mine. Blessings