Fibro-flawed

M

map76

Peer Supporter
I was thinking today about how harmful the Fibromyalgia label is (if Fibromyalgia really is just TMS.) I know 100% that there is nothing structurally wrong with my body, and I have no fear of injuring myself.

But the widely accepted medical view of Fibromyalgia puts a little doubt in my mind which is frustrating.

I just wish I never got diagnosed with Fibromyalgia!
 
Hi @map76. I have some information for you about your diagnosis, which I really hope you can appreciate.

It's the actual definition of "fibromyalgia", which is a combination of two Latin words that were arbitrarily put together by the medical profession when they could not figure out what this syndrome was, never mind how to treat it.

The word "fibro" refers to fibrous tissue (eg muscle, tendons, ligaments). And the word "myalgia" means pain.

Therefore, your so-called diagnosis simply means "muscle pain". Muscle pain which they can't measure, can't test for, can't explain, and for which the most effective (but not really) meds are antidepressants.

We actually often joke around here that if your diagnosis is just words strung together which do nothing more than describe your symptoms, then it's TMS.

Other examples off the top my head:
Chronic Fatigue Syndrome
Irritable Bowel Syndrome
Complex Regional Pain Syndrome

Does anyone else out there have others?

Ironically, Dr Sarno might have misused the term Myositis when he came up with Tension Myositis Syndrome, because apparently myositis refers specifically to inflammation, which in fact can be measured and tested for. Perhaps he was referring to the fact that stress (aka mental and emotional "tension") is known to cause inflammation. I heard somewhere quite a while ago that at the end of his career he was saying that TMS really ought to stand for The Mindbody Syndrome.

Bottom line: have a think about the possibility of rejecting your so-called diagnosis as nothing more than traditional medicine's attempt to give you a diagnosis, when in fact what they've got for you is bugger-all.

Then look to TMS - whatever that acronym means to you.
 
JanAtheCPA said:
Hi @map76. I have some information for you about your diagnosis, which I really hope you can appreciate.

It's the actual definition of "fibromyalgia", which is a combination of two Latin words that were arbitrarily put together by the medical profession when they could not figure out what this syndrome was, never mind how to treat it.

The word "fibro" refers to fibrous tissue (eg muscle, tendons, ligaments). And the word "myalgia" means pain.

Therefore, your so-called diagnosis simply means "muscle pain". Muscle pain which they can't measure, can't test for, can't explain, and for which the most effective (but not really) meds are antidepressants.

We actually often joke around here that if your diagnosis is just words strung together which do nothing more than describe your symptoms, then it's TMS.

Other examples off the top my head:
Chronic Fatigue Syndrome
Irritable Bowel Syndrome
Complex Regional Pain Syndrome

Does anyone else out there have others?

Ironically, Dr Sarno might have misused the term Myositis when he came up with Tension Myositis Syndrome, because apparently myositis refers specifically to inflammation, which in fact can be measured and tested for. Perhaps he was referring to the fact that stress (aka mental and emotional "tension") is known to cause inflammation. I heard somewhere quite a while ago that at the end of his career he was saying that TMS really ought to stand for The Mindbody Syndrome.

Bottom line: have a think about the possibility of rejecting your so-called diagnosis as nothing more than traditional medicine's attempt to give you a diagnosis, when in fact what they've got for you is bugger-all.

Then look to TMS - whatever that acronym means to you.
Click to expand...

Thank you @JanAtheCPA . That is some good information, and it is helpful to me. I remember a physician I had years ago acknowledging that
fibromyalgia as a “wastebasket” diagnosis.

I think part of the reason they came up with a label was to validate people who had these undetectable symptoms. Apparently, some people feel a sense of relief once they get the fibromyalgia diagnosis. For me, it was devastating because there is supposedly no cure.

Another condition I have that I believe is TMS is dermatitis. My dermatologist has no clue what is causing it, nor have any topical meds helped.
 
map76 said:
My dermatologist has no clue what is causing it, nor have any topical meds helped.
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Dermatitis is a classic stress-based symptom (eg: TMS). My dermatologist acknowledges that a lot of generic dermatitis is mindbody in nature. I just apply my favorite calming lotion (contains borage) to whatever area has decided to flare up, and it goes away quickly. The key is that instead of going on the offensive with medication (fear-based), I'm offering my fearful brain a suggestion to accept "calm" - which applies physically and psychologically at the same time.

Of course, it's almost always something for those of us with hyperactive nervous systems. I've learned to take none of it seriously, and remind myself to breathe and be more mindful when I experience symptoms.
 
JanAtheCPA said:
Does anyone else out there have others?
Click to expand...
map76 said:
fibromyalgia as a “wastebasket” diagnosis
Click to expand...

@JanAtheCPA Here's one from the history books. Neurasthenia Really popular in Victorian times. Another one I just read in a Tolkein book is Lumbago though that one was more like 'back pain' and not quite such a trash can. Being sort of detail minded I always asked my doctors as I went through the system.."what does THAT mean?"

One surgeon did NOT want to operate on me and was later let go by the clinic I was going to for NOT prescribing enough surgeries. He wrote on my paperwork I had Myositis. When I asked him what that meant he said 'pain in the muscles'. I also asked him why my 'herniation' wasn't listed as the problem and much like Sarno , he told me that the symptoms I had did NOT match up with the MRI regardless of the 'damage'.

There are still some thinking Mds out there who just don't lob you in the dumpster... But I fear they are becoming a minority. At least with Neurasthenia they knew it had a strong psychological component.

to the OP:
map76 said:
I just wish I never got diagnosed with Fibromyalgia
Click to expand...

ALL of us came here with multiple diagnoses. Part of recovering from TMS is tossing them in the dumpster...just like they did to us!
 
Yeah, that is weird. Most 'itis' suffixed words do IMPLY inflammation. Thinking back , He might have called it Myofacial?

I spent quite a lot of time trying to DELETE my education in their nomenclature. That being said, the 'M' in TMS was originally Myositis, correct? And Sarno him self said 'what inflammation'?
 
Yep, he specifically used myositis. But that was decades ago! The one thing in life that doesn't change is that things change :p
 
map76 said:
I was thinking today about how harmful the Fibromyalgia label is (if Fibromyalgia really is just TMS.) I know 100% that there is nothing structurally wrong with my body, and I have no fear of injuring myself.

But the widely accepted medical view of Fibromyalgia puts a little doubt in my mind which is frustrating.

I just wish I never got diagnosed with Fibromyalgia!
Click to expand...

If this helps you, I was diagnosed from different doctors among other diseases with chronic fatigue syndrome, also fibro... When I heard the word Fibromyalgia bells were ringing, alarm began, noway I could accept it ( though I was really in fear as you). Well, it took me much much time to face the fear( almost 3 years) even now I am afraid of this, but with more courage and determination.
Anyway, that f@@ foggy sensation, deep fatigue, pain here and there ( I am afraid even writing about them) and other symptoms have subsided or vanished. But I had many changes to do meanwhile, both in my life and my way of thinking.
I am not a success story yet... :) But I overcame the fear of labelling, you have this and this and that. I have my blood tests , other tests need to be done occasionally and that' s it. These diagnosis were ridiculous and were given to me, because doctors couldn't find another diagnosis... I am still angry with them, given the fear and the despair I felt hearing all these.
Keep tracking yourself and try to enjoy something even it sounds impossible. The same way brain learns to fear, the same way learns to be happy, it needs revision ( though in happiness we have to try more...)
 
Baseball65 said:
One surgeon did NOT want to operate on me and was later let go by the clinic I was going to for NOT prescribing enough surgeries
Click to expand...
It is common almost globally for doctors to prescribe medicines and surgeries due to financial reasons... Respectable this doctor
 
JanAtheCPA said:
The word "fibro" refers to fibrous tissue (eg muscle, tendons, ligaments). And the word "myalgia" means pain
Click to expand...

It is not such important, but I would like to make a correction. The second part of the word, myalgia is greek and means " pain of muscle" , consisted of the words mys = muscle and algos = pain, strain. So, the whole meaning of the word is the pain of the tissues and the muscles. So, it is not a disease such as chickenpox, cancer etc but a syndrome of symptoms, manifesting at a range and differentiated at each person. And what doctors call a syndrome means they don't believe it is or they can't call it disease.
I hope my English have been improved by exercising so much in here!
 
:)
I don't know if you are in the same state I was, but I was like an injured animal in a cave, without any help. Could not enjoy anything. Anyway, these symptoms, like you are in a cloud, exhausted, dizzy in pain don't allow you to enjoy much.
Started with the basics. I tried enjoying eating my meals ( healthy and fast food, whatever I wanted). I tried enjoying other basic things, a walk, a movie, without pressure. It is the outcome independence, I said I will do it no matter what. Of course, first times are like you are climbing a mountain, but day to day your mind becomes familiar to the idea and gradually you forget for minutes the pain etc. It took me almost a year to do basic things, like eating, having a bath normally, walking, discuss with a loved one etc
I started Pilates, you can find something you really like, search for something free or cheap, even online. first year I felt like I am 90 years old, could not make any exercise without being tired, but it helped soooo much, even in facing the fear ( you say, come on, fear, look what I am doing!)
A very important part though is your mind, your soul. Why do you feel the way you feel? And very important, what do you feel about your situation and why? Do you feel useless? Why? Do you feel guilty? Gabor was a light in a dark room for me, I strongly recommend his books.
I did the structured programme, after some months I did allan gordons, besides I talked to a specialist, so I can understand better myself ( you have to find the one that fits you, don't be afraid to change the one you don't like, it is not a persistence, it is a choice).
I began to ask for help and I began to make me a priority, without being selfish. When you put you in priority something relaxes into you. It says, aaa, ok, I like this. Gabor says it is better to feel guilty, it means you fullfil your needs.
I had many emotions hidden and I didn't know anything about how I can feel an emotion. It needs exercise, but anyone can do it. They are very painful at the beginning. Sometimes you think you can't stand it. But you feel them and becomes more more comfortable.
There are many techniques recommended but they don't fit to anybody. I can't meditate but I can listen to music and relax. I can not be very mindful but I can be curious and observe. Choose yours.
And all these things need time and rest, so you stop anything that is not essential to your healing. Make you ( not your healing) a priority.
Last. I noticed that something I have read eg last year I begin to feel it now. In my case it is a veeeeery slow procedure, but I am telling myself from time to time, take your time dear, you deserve it.
Small but determined steps per time.
Everybody can make small steps, so you
 
@Xara, I wish I could "Like" this more than once - it is SO awesome. YOU are awesome!

Honestly, you could copy this and post it in the Success Stories subforum. To me, there are many different definitions of success in this work.
 
@Xara thank you. I am trying my best to keep doing activities. I am playing music, going for walks, but there is hardly any joy in it because I am constantly in pain. I know my body is healthy and that these activities won’t worsen my condition, but every second is suffering.

I just try to remind myself that things have been better at times in the past, and I can improve.

I appreciate hearing your story because it gives me hope.
 
map76 said:
but there is hardly any joy in it because I am constantly in pain
Click to expand...
I am so sorry for this... I know what it's like. Maybe, you have to dig and find something you really want to do, you desire to do, you are thirsty for this and begin with this. I remember beginning with swimming with a friend made me feel well ( nothing special, swimming just like a dog). I remember that my leg and my neck etc were in pain as I moved towards the sea, and it seemed like I would never reach it ( 10 meters walking...). But, being under the water ( among with lot of fear) released some joints/ muscles ( freedom? Movement? I don't know). I went swimming almost every day that summer, 3 years ago. I was not healed but it changed my relation with pain.
I have to accept that writing this even now is fearful and painful for me. It makes me pity of what I' ve been through. It was so difficult... But after all, I WANTED to do it and did it. And had the first seconds ( seconds, I mean it) without pain and fear. It was a necessary stage.
 
Dear @JanAtheCPA ( my first hope in this forum), unfortunately I am not a success story yet. Symptom imperative makes me go round and round and at this period of time I am realizing the amount of fear stocked in my mind.
I just entered the stage where I can feel somehow the connection feeling - body reaction.
I have symptoms ( minor though) and get tired from time to time, fearful etc. Especially in tough times ( when stressed with responsibilities, when I get sick, eg coronovirus!, when something threatens me or my loved ones), anyway in many cases ( half month! ) ...
But... When I began writing in this forum I wished everyday to write my success story. I don't feel it anymore. I am not obsessed with success anymore. And it is liberating[/QUOTE]
 
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