So many questions so little answers!

Lady_Jabo

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I am new to the world of Fibromyalgia and have some questions. right now the biggest one I have is, at about the same time everyday my pain increases 10 fold and I get the worst headache, is this part of the fibro and does anyone else go thru this? I was just diagnosed this past month and was told that it was triggered by the car wreck I had in 2019 I am trying to learn all I can and what I can do to ease the pain at home along with the meds.
 

sunkacola

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Hi Lady Jabo, and welcome.
Many of us have pain that increases or is worse at certain times of the day, so that is not strange for fibro.

I have made a post that addresses your questions about what you can do for yourself to ease your suffering at home. I recommend that you read it and start trying whatever you can. Medications are really not the best way to manage this, although I know full well that at times they are necessary. You may be able to do things that can cut down on how much of that you need. Let us know if you have questions, because we are here to help each other.
 

Jemima

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Hi Lady Jabo,

Welcome to the forum. I hope you find lots of the information here helpful - I know I did!

It might be worth having a look at your daily routine to see if there is something going on that could be triggering you. Do you do too much in the hours before, and then expect a crash afterwards? Self observation can be really helpful for identifying small things that we can tweak to improve our symptoms. I kept a notation diary for a few weeks, and found some really surprising patterns!

Good luck, and do ask away if you have any questions 🌻
 

Drtohelpfibro

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Thanks for sharing. I am a physician who has a passion to help those with fibromyalgia. For too long fibromyalgia has been dismissed, overlooked, and not received its due. There is so much we can now to help and even reverse fibromyalgia.
 

Drtohelpfibro

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If the headaches are episodic and severe that by definition is a migraine. A doctor would need to take a careful history and do a meticulous physical exam. Those being normal would confirm the suspected migraines. Migraines are under the umbrella of fibromyalgia. Not everyone with fibromyalgia has migraines nor does the reverse necessarily always occur as well. Some have ibs, or other episodic regional pain disorders. I hope this is helpful
Let me know
 

sunkacola

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Not wishing to sound flippant here but how is it you seem to believe it can be reversed, but yet people I've spoken to/typed to/consulted seem to think we're saddled with it for life?
Good question, Grumpy.
some of us on this forum are also still waiting for Dr. Lenz to cite a reference for the things he states. So far he has not done so. If a person cannot cite genuine scientific evidence to back up their claims, then what they say is opinion rather than having a factual basis.

As for being saddled for life, I don't know that and don't know otherwise either. You never know what may happen next. I tend to assume it will be with me for life, because that is simpler for me and makes it easier to manage it every day than it was when I was trying so hard to find a cure. But that might not be the best way to look at it for everyone else. We are all different.

There are many things that a person can do to mitigate the symptoms and even improve your whole life. I have written them in that post of mine. My guess is that many of the same things are in Dr. Lenz's book. Eat well, exercise, reduce stress, take appropriate supplements, have good mental health, etc.

You can definitely get better, in that you can reduce the frequency and severity of the pain, and you can learn how to manage what you still have so that it doesn't ruin your life or define you. I know this because I have done it, as have others on this forum.

But truly reversing it? Probably that won't ever happen. If anyone found a way to do that everyone who has fibro would be doing it and getting all better again.
 

Drtohelpfibro

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Good question, Grumpy.
some of us on this forum are also still waiting for Dr. Lenz to cite a reference for the things he states. So far he has not done so. If a person cannot cite genuine scientific evidence to back up their claims, then what they say is opinion rather than having a factual basis.

As for being saddled for life, I don't know that and don't know otherwise either. You never know what may happen next. I tend to assume it will be with me for life, because that is simpler for me and makes it easier to manage it every day than it was when I was trying so hard to find a cure. But that might not be the best way to look at it for everyone else. We are all different.

There are many things that a person can do to mitigate the symptoms and even improve your whole life. I have written them in that post of mine. My guess is that many of the same things are in Dr. Lenz's book. Eat well, exercise, reduce stress, take appropriate supplements, have good mental health, etc.

You can definitely get better, in that you can reduce the frequency and severity of the pain, and you can learn how to manage what you still have so that it doesn't ruin your life or define you. I know this because I have done it, as have others on this forum.

But truly reversing it? Probably that won't ever happen. If anyone found a way to do that everyone who has fibro would be doing it and getting all better again.
I would be happy to send you a copy of the book free of charge .
Fibromyalgia is complex. I have references in each chapter and I don’t tell people to supplements .
It is evidence based.
 

sunkacola

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I would be happy to send you a copy of the book free of charge .
Fibromyalgia is complex. I have references in each chapter and I don’t tell people to supplements .
It is evidence based.
As I already stated, I am not asking for a copy of your book, although thanks for the offer.

What we have been asking, and you continue to refuse to answer, is what are the studies or "evidence base" that lend credence to the statements that you have made such as saying that most people with fibro don't eat a healthy diet, or a certain percentage of patients with fibro have this or that.
If you are only referencing your own personal experience with patients, that is valid, but you should be saying "Within my own patients, I have noticed....." rather than making blanket statements about all fibromyalgia people.

If you are going to make sweeping statements here, you need to cite your references here.

If you are not willing to cite genuine scientific research as evidence for your statements on this forum, then please don't make those statements on this forum. I am not picking on you -- I have said the same thing previously to others.

We are concerned with trying to make sure everything that is stated here as fact is a fact, backed by research that is sufficient to make that statement viable. Without that, anyone can make any statement they like and it may be untrue, or myth, and if someone believes it and follows advice which may not be accurate, then we are not helping each other. This is why we always ask people to tell us where they got their information (without, of course, posting direct links to the forum).

I am not saying your statements are untrue because I don't have any way to know for certain, only saying in the future, please don't make statements on this forum that you cannot, or are not willing to, back up with proper references that you post on this forum. Thank you.
 

Drtohelpfibro

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If you would like, I can email you the citations I included in the book.
 

Jemima

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If you would like, I can email you the citations I included in the book.
I just don't understand why you want to pull people out of this anonymous public space and into a private form of communication, gathering personal contact data along the way.

Please be aware that Sunkacola is trying to safeguard all of the users here - she's not simply trying to satisfy her own curiosity about your credentials. The idea that you need to provide all the citations in your book to one of us is a very strange response. A normal response might have been, "There was a fascinating study from # that revealed #, which helped me to attune my practice towards #." By discussing some of the evidence that led you to draw the conclusions you've drawn, you would be demonstrating your authority to this forum's thousands of members - a far more honest and effective way of attracting an audience for your work. Requesting personal data and trying to pull people off of a forum is a little inappropriate, don't you think?
 
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