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Jimjam56

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Good morning. I've recently been diagnosed with Fibromyalgia... My pain is at the top of my arms to the inside at elbow, my left collarbone, top of my hips and groin area. I'm now on pregabalin which I've been gradually weaned onto. I'm now at the top with 6x50mg in the morning and the same at night with also 3x10mg amitriptyline... My question is has anyone tried EFT (Emotional Freedom Technique)? Does anyone else take this amount of Pregabalin? I feel out of it somedays ie foggy head, dizziness etc The one good thing is I get a brilliant sleep which makes me feel like I can handle things better as I'm getting a new sleep... Thanks for reading 🥰
 

sunkacola

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Hi Jimjam,

Welcome to the forum!

I am familiar with EFT, and I know it is effective for a lot of psychological things. I have not heard it used, however, with physical problems, only with psychological ones. Since it really cannot hurt anything to my knowledge, you may as well try it and let us know if it helps with physical pain. (In case you don't know, you do not have to pay anyone to teach you how to do this - all the instructions can be found online.)

As for the medication, it does sound to me as if you are on some pretty high doses, and that may result in your having unwanted side effects, although it is different for everyone. While I am not opposed to the use of medication, I always recommend that people try alternatives to using drugs to improve their symptoms with fibro, because if you can use fewer drugs that is always preferable. I have written a post about that, and recommend that you check it out to see if it is helpful to you.
Here it is:
 

Jimjam56

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Can you please look at this quote and let me know how you think fibromyalgia is a PHYSICAL pain!!! I'm confused
 

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fimi

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Hi @Jimjam56
People with fibro have a heightened sensitivity to pain as the CNS processes pain signals differently. Therefore, as it's an issue with the nervous system (neurological), it can unfortunately flag up a myriad of other symptoms.
That's it put as much to the piont as I can. Hope it helps. But I'm sure you will receive further helpful and in depth information from others here...
 

JayCS

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Hi Jimjam, your snippet and @fimi's explanation are at the moment the leading hypothesis about the cause and explanation of fibro, the one calling it a form of "central sensitisation". Others are the autoimmune or small fibre neuropathy or AV-shunt explanations. Seeing a similarity to conditions like ME/CFS and TMJ they decided that these seem steered by the CNS and so associated them as "central sensitisation syndromes" (CSS).

Your snippet put it in a bad & wrong way - for many reasons. So I very much understand you feel confused by it.
(There's lots of rubbish floating about, torn out of context. So best to keep to good resources.)

For one: All the the above explanations say it is physical, and not mental. Although stress and trauma can contribute to the physical sensation and may trigger the FM or a flare. So if it's neurological, as they assume, it is physical.

What they mean is that docs and researchers cannot find any injury as a cause, neither tissue nor nerve injury, so it's neither of the two traditional pain types (nociceptive and neuropathic). This had lead them to talk about centralized or centrally sensitized pain and introduce the concept of nociplastic pain. In that sense the snippet is sort of right: It may be neurological (thus also physical).

But is it? What if the other explanations prove to be better? What if each is only a part?
I have severe fibromyalgia, but I have no amplified pain (hyperalgesia), no pain from touch (allodynia), no low pain threshold, no high pain sensitivity = I have a fairly high pain tolerance. These are all things that these CSS studies are describing about us. So the hypothesis may apply to some sorts of FM, it definitely doesn't apply to mine.
So does it "affect the sensory processing system" as the snippet says? "My body" is overloaded by pain and other symptoms, visible to my wife, even if I try to ignore it. Just because they haven't found the real reason yet, researchers have no better idea than that it's just wrong signals. My wife would laugh her head off... (OK, I'll ask her. :cool:.)

What about the snippet saying fibromyalgia is no inflammation or damage to the joints?
Well: there is no traditional form of inflammation or damage provable. (Whether joints or what I think: the tendons around them.)
But there are researchers checking whether it may be in some other way inflammatory or autoimmune or the immune system.
Also I personally am not sure if they just haven't found the type of inflammation or damage yet, because it's a new sort. Not a new sort of pain, a new sort of inflammation or damage.

Also fibromyalgia is not just widespread pain, it also means we have severe further symptoms like fatigue, gut problems, unrestful sleep, fog etc., to varying extents. The explanation and the snippet ignore that completely.

And lastly the snippet suggests that brain imaging proves that it is a disorder of the central nervous system. Wrong:
Nothing has proven that yet. It's still a hypothesis (I can quote research on that). Some say it's coming close to a theory.
Brain imaging may be showing to a certain extent that the central nervous system is in a disorder. (See @tormodg's video post.)
But to claim that this is a definition or even a good fairly complete way of seeing fibro is exaggerating and simplifying.
Brain imaging may show a certain amount of differences, but neither whether if that is a cause, an effect, a biomarker or a symptom. (Not sure if symptom is the right word there.)

To repeat my answer to your main question: Even if it were neurological, even if it shows up on images, that proves it is physical.
What they are trying to say is just that there is no tissue or nerve damage (provable).
 

sunkacola

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Great reply, JayCS.
There is so much wrong and misleading information about fibromyalgia out there, and at first it is nearly impossible to navigate through it all to find what is real or true. Especially when it has to do with something that is very much still in the research stage. Of course each post is going to say it is "right" or has "conclusively determined" that the cause or nature of fibro is This. But nothing is certain about the causes or how to classify the syndrome at this point.
I always suggest people take what they read online or in published papers or books with a grain of salt, because you can read very convincing posts and reports and research results that say very different and even contradictory things. You may not know that this one is only someone's opinion and they have no medical background, or that those research results are from of a study of 22 people and was based only on what they said on a questionnaire. Even the good medical resources don't have anything more than theories they are working on right now.
 

fimi

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I think we have to be careful about only telling newly diagnosed sufferers that what causes fibro it is still in the research stage. Some people (myself included) take years to get a diagnosis, and of course with this we instantly reach out for answers that have been left hanging for years. To then say we don't really know what it is, and it's still in the research stage, is wrong in my opinion. What should be given is the latest definition of what fibro is from the medical profession and to add that research is ongoing.
People look for answers - diagnosis / reasoning / symptoms - it's a fact of life. Giving them the latest info and letting them go away to concentrate on self care is wiser than a diagnosis and worrying that they still don't know what it is, which is counter intuitive in my opinion - what's the piont of a diagnosis if we don't give the latest findings? Then it's just a label left hanging...
 

sunkacola

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I think we have to be careful about only telling newly diagnosed sufferers that what causes fibro it is still in the research stage. Some people (myself included) take years to get a diagnosis, and of course with this we instantly reach out for answers that have been left hanging for years. To then say we don't really know what it is, and it's still in the research stage, is wrong in my opinion. What should be given is the latest definition of what fibro is from the medical profession and to add that research is ongoing.
People look for answers - diagnosis / reasoning / symptoms - it's a fact of life. Giving them the latest info and letting them go away to concentrate on self care is wiser than a diagnosis and worrying that they still don't know what it is, which is counter intuitive in my opinion - what's the piont of a diagnosis if we don't give the latest findings? Then it's just a label left hanging...
fimi, I see your point.
However, I must disagree. I personally always want to know the truth, and not just what I want to hear, if what I want to hear is not really true.

The problem with giving the latest medical definitions is that there is always more than one! Currently there are people saying it is a neurological disorder, others saying it is an autoimmune disorder, and others saying it is a brain chemical disorder, and entirely other things. So there is no one current medical answer to that question.
Unfortunately it IS a medical label left hanging at the moment, and telling someone it is not doesn't change that.

One of the things that we have to accept and get used to with fibromyalgia is Not Knowing. After all, we can make plans for next Saturday, but we do not know ahead of time if we will actually be physically able to do that when the time comes.
We can try this or that technique or a certain medicine but it is unknown whether or not it will help or make it worse or do nothing. We can see a doctor for various things that pop up, and won't know if they are fibro-related or not, and might not even know after seeing a doctor about them.

Tens (or hundreds) of thousands of us with fibro diagnoses have gotten used to the fact that no one knows for sure what fibromyalgia really is, and the latest newcomers are no different and can manage to be OK with that as well. I think people are usually more focused on what they can try that might help than they are on causes or definitions. At least, that is my experience over the years I have been on this forum and talking to people about fibro.

And the biggest problem with telling people that Fibromyalgia is This or That when it is not known, is that one could be imparting information that turns out to be entirely false. That's the last thing newcomers need. In addition, if we say that it is this or that to one person, another person who just drops in to read one post may only read that, out of context, and not take into account that it is not a known fact, and then make assumptions about it that lead in the wrong direction.

I think that we should say to newcomers that the latest theories are this and this, and this other thing is still being studied as well, and that would be reasonable. And of course, to offer support to newcomers, as we always do, and to let them know there are people (like our always well-informed JayCS ) who are keeping a close eye on the theories as they appear, and on the results of various studies and what is being considered at the moment, and new information is always shared.

There is so much misinformation all the time now on the internet that I think it's important for us to be as careful as possible in giving people answers to avoid the possibility of adding to that.
 

fimi

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Hi sunkacola, thank you for expressing your opinion.
One of the things that we have to accept and get used to with fibromyalgia is Not Knowing. After all, we can make plans for next Saturday, but we do not know ahead of time if we will actually be physically able to do that when the time comes.
We can try this or that technique or a certain medicine but it is unknown whether or not it will help or make it worse or do nothing. We can see a doctor for various things that pop up, and won't know if they are fibro-related or not, and might not even know after seeing a doctor about them.
Believe me sunkacola, I know all this...I've been doing it for over 28yrs!
My piont was, that despite all the various information out there regards fibro, an explanation should be given of the latest findings with people being made aware that research is still ongoing. When I say findings, I'm not talking about the ones you have to dig deep to find - they can do more harm than good - I mean the specialist that actually know what they're talking about.
If we don't share current findings, how are we to learn and grow as a society, as sufferers of this illness? And what would be the piont in research?
I think people are usually more focused on what they can try that might help than they are on causes or definitions
That's definitely not my experience sunkacola, I instantly wanted to know the cause and then invetigated self care...I wanted to know what I was dealing with. And others I have spoken to with fibro and other illnesses have wanted to know what their illness is first and the cause. Again, if we're not that bothered about what it is, what's the piont in research??
I must say, this is my opinion and each to there own, but my solid opinion is that people should be given the latest findings from their doctor, on which to base their own self care. Not giving them the truth (as it stands at the time of diagnosis) in my opinion, can do more harm than good; to the body and mind.
 
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Jimjam56

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Many thanks for all knowledge. It's a lot to take in but I definitely have an open mind and realise not everyone suffers the same etc... Kind regards
 

JayCS

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Hmm, fimi - I don't know if I've got your point yet! :) 👐

Are you saying that you "believe" in the CSS 'findings' and not in the autoimmune, the SFN, the AV-shunt, the neuroendocrine, the mitochondrial or the 'underlying issue' 'findings', altho they are all recent, and all by specialists that know what they're talking about?
How has knowing the CSS hypothesis helped you develop your self-care? - :unsure: The only one that's helped me a little was the autoimmune one, altho that turned out partly misleading.
 
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fimi

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Hi JayCS, my piont is, that we should be giving people the current findings at time of diagnosis, Which for me was...
People with fibro have a heightened sensitivity to pain as the CNS processes pain signals differently. Therefore, as it's an issue with the nervous system (neurological), it can unfortunately flag up a myriad of other symptoms.
I'm not saying that something is right or wrong. People may disagree with the explanation given them (which changes over time I know) at time of diagnosis, but they should be made aware of the latest and most concurred information and be allowed to make their own decisions.

I personally believe it is my CNS that processes pain differently, but I stress that this is only my opinion from my own experiences, and I would never tell anyone they have to believe that is the definition - I'm not a doctor.

I have always been a believer in giving people the latest honest facts so it allows them to make their own decisions and work on their own self care. How are we ever going to learn if we don't get a chance to agree or disagree with what they say?

Hope ya get my piont there JayCS!! 😊
 
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