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How do I deal with this?
Hi, I'm a 17 year old girl and I was diagnosed with Fibromyalgia at the end of last year. I'd been suffering through tension headaches, fatigue, jaw-aches and many other random aches for years. And I thought: "Finally!!! An answer!" I of course didn't know what Fibromyalgia was... I was told to research it and then go back to the doctor with my parents to discuss it. We found that it explained a lot of things: the depression phases that got worse when my body felt worse, the feeling like I have a never-ending flu, the pain and the fatigue, the TMJ disorder, the dizzy spells, the numbness in my hands and the concentration issues I'd been experiencing for so long. After seeing 2 more specialists it was confirmed. And I was absolutely shattered when I heard there it can't be fixed... I still am. I go to Physio therapy once a week and I'm taking cymbalta. Both help in little ways, the physio helps the pain and movement restrictions for a few days making going to school a little easier, and the cymbalta helps my negativity most days. But, my question is: how do I deal with this?
PART 2
If you're up to it, send me more details about your condition along with
any tests or treatments you had in the past.
One aspect of FMS that affects many sufferers is the mental-emotional, something that is extremely difficult to control.
Thinking or willing improvement in this area alone is usually not enough to make a difference.
Negativity, stress, anxiety and depression, are not only possible symptoms, but also co-factors in maintaining or excasperating other symptoms..
By the way, look into the information relevent to Dr Garth Nicolson
coming to MedHelp next week, as the majority of FMS, CFS, GWI etc sufferers , have an underlying pathogenic infectious condition, and he's the leading expert in this field. Maybe that's why you are still in medical limbo.
I know that Australian researchers made some inroads in AIDS research,
in connecting AIDS to HHV-6, which also sometimes mimics MS.
Borellia, Bartonella, Ehrlichia, Babesia, Pathogenic mycoplasma and company are some of the most difficult to diagnose-as most Lab tests
cannot detect them- and of course treating them is another chapter.
Wish you well.
Niko
If you're up to it, send me more details about your condition along with
any tests or treatments you had in the past.
One aspect of FMS that affects many sufferers is the mental-emotional, something that is extremely difficult to control.
Thinking or willing improvement in this area alone is usually not enough to make a difference.
Negativity, stress, anxiety and depression, are not only possible symptoms, but also co-factors in maintaining or excasperating other symptoms..
By the way, look into the information relevent to Dr Garth Nicolson
coming to MedHelp next week, as the majority of FMS, CFS, GWI etc sufferers , have an underlying pathogenic infectious condition, and he's the leading expert in this field. Maybe that's why you are still in medical limbo.
I know that Australian researchers made some inroads in AIDS research,
in connecting AIDS to HHV-6, which also sometimes mimics MS.
Borellia, Bartonella, Ehrlichia, Babesia, Pathogenic mycoplasma and company are some of the most difficult to diagnose-as most Lab tests
cannot detect them- and of course treating them is another chapter.
Wish you well.
Niko
Hey Jen.
Welcome to the forum.
I can symphathise with your frustration, after having gone through
all that and still no answers or improvement.
That means that the underlying cause(s) of your condition HAS NOT BEEN UNCOVERED and treated yet (barring any irreversible impairment
or damage).
It is very unfair to make such generalized negative and harsh comments, based solely on your own personal experience and views .
Perhaps your response was a bit hasty and emotionally charged.
I suggest that you deepen your knowledge in Health matters, to the level that you can have a better understanding of how the body works,
how disease starts - and how to return to better health.
For magnesium supplementation, oral supplements have an average
of 4% efficiency rate, as they are very difficult to absorb and assimilate.
Most people get laxative effects, so my recommendation is to try Transdermal Magnesium Oil, a superior way to get magnesium in your body. Done daily the first few weeks, will bring your levels up and then you can do it twice weekly for maintence.
END of PART 1
Welcome to the forum.
I can symphathise with your frustration, after having gone through
all that and still no answers or improvement.
That means that the underlying cause(s) of your condition HAS NOT BEEN UNCOVERED and treated yet (barring any irreversible impairment
or damage).
It is very unfair to make such generalized negative and harsh comments, based solely on your own personal experience and views .
Perhaps your response was a bit hasty and emotionally charged.
I suggest that you deepen your knowledge in Health matters, to the level that you can have a better understanding of how the body works,
how disease starts - and how to return to better health.
For magnesium supplementation, oral supplements have an average
of 4% efficiency rate, as they are very difficult to absorb and assimilate.
Most people get laxative effects, so my recommendation is to try Transdermal Magnesium Oil, a superior way to get magnesium in your body. Done daily the first few weeks, will bring your levels up and then you can do it twice weekly for maintence.
END of PART 1
I'm sorry but this is rubbish! I have tried EVERYTHING!! Holistic therapies, naturopaths, osteopaths, immunologists, rheumatologist s, raw fruit and veg diet, earthing, picking and dare paring my own teas, moving to the country, low carb high carb everything diets, exercise program's, constant physio, ultrasound, meditation, medication..... Endless endless things....and I still use all of these all of the time...but to give someone newly diagnosed with false hope of remission is cruel. The chances of remission are as close the that of seeing a pig fly ! By all means try absolutely every avenue and don't just rely on these morons call doctors! They think they are gods!
At the moment I am on medications and herbal supplements including magnesium, which I'm yet to know of its helping effects. Have been going through pain med changes this month and have had enough.
I'm so sorry you guys have this so young. It's so unfair. I'm 39 and have been unwell for five years, three years diagnosed. It is hard. I recommend a pet as they are there in the night when you don't want to wake anyone. I know this sounds crazy, but they get me through. Jen
At the moment I am on medications and herbal supplements including magnesium, which I'm yet to know of its helping effects. Have been going through pain med changes this month and have had enough.
I'm so sorry you guys have this so young. It's so unfair. I'm 39 and have been unwell for five years, three years diagnosed. It is hard. I recommend a pet as they are there in the night when you don't want to wake anyone. I know this sounds crazy, but they get me through. Jen
Wow, haha! That was a lot to go through :)
Thank you both.
Okay, first Niko:
As much as the low card diet sounds like a great idea, and I did a little research on it too, I would love to try it. But at school in the hostel, without it I would probably starve as I do not eat any red meat or pork, and the catering for that isn't a top priority here... But I do fill myself with as much fruits and vegetables as I possibly can.
With the help of my mother, I am going to try the fungal test, and hopefully I'm clear in that department :) Thank you so much for all your help and advice :)
And to catscatscatscats:
The more times I read your comment, the more I think I should see a naturopath :) I've only been doing the physio and taking the medication because of how new fibromyalgia is to me. There is still so much I need to research and find out about it, I've also been scared of changing treatments. And without the Cymbalta I did notice that the depression and negativity got a lot worse.
But, as soon as I can, I will definitely try addressing the smaller problems and seeing a naturopath :)
Thank you so much to the both of you :)
Xxx
Thank you both.
Okay, first Niko:
As much as the low card diet sounds like a great idea, and I did a little research on it too, I would love to try it. But at school in the hostel, without it I would probably starve as I do not eat any red meat or pork, and the catering for that isn't a top priority here... But I do fill myself with as much fruits and vegetables as I possibly can.
With the help of my mother, I am going to try the fungal test, and hopefully I'm clear in that department :) Thank you so much for all your help and advice :)
And to catscatscatscats:
The more times I read your comment, the more I think I should see a naturopath :) I've only been doing the physio and taking the medication because of how new fibromyalgia is to me. There is still so much I need to research and find out about it, I've also been scared of changing treatments. And without the Cymbalta I did notice that the depression and negativity got a lot worse.
But, as soon as I can, I will definitely try addressing the smaller problems and seeing a naturopath :)
Thank you so much to the both of you :)
Xxx
My B12 injections are the methylcobalamin kind, so not to worry. Believe me, I have tried all of those natural fruits and vegetables to try and get benefit and haven't had any relief of symptoms from doing so. I do, however, take lots of fish oil to help with many different things. It wasn't until I started increasing my gabapentin that I had HUGE improvements in my lifelong parasthesias, so at this point I am completely unwilling to disregard that. I'm sure that will change in the future once the natural products and supplements prove their effectiveness for me.
PART 2
catscatscatscatscats, make sure your B12 injection is NOT Cyanocobalamin. Minimum health risks will not protect for health effects after repeated injections or delayed health effects, as the cyanide portion of it will bind with potassium from your body and create potassium cyanide,
a highly poisonous compound.
A better choice would be methylcobalamin, not used by clinics and doctors
mainly b/c of higher costs and ignorance, I suspect.
The are natural substitutes to Gabapentin, as it is a GABA analogue.
Broccoli, walnuts, brown rice, rice bran, potatoes, spinach, lentils, bananas, oranges, almonds, oats, beef liver, mackerel ,halibut, fish oil
green tea, contain GABA.
Avoid caffeine- a morning coffee is better tolerated- sugars including artificial, simple carbs, MSG and company-meaning all the different names the food industry uses to disguise it, so do a search- because they contribute to excitotoxicity that eventually leads to the formation of TNFa
group of chemicals implicated in many inflammatory and neurodegenerative conditions.
Talk to your naturopathic doctor about it.
There are many natural supplements that will help you with all the symptoms you are getting relief from,taking Gabapentin.
Some of these natural supplements are mentioned in a thread I started in the past titled "I will do this" ( see my previous reply also).
Also keywords to search : Leaky gut syndrome, GAPS, SCD-breaking the vicious cycle, EFT (emotional freedom techniques), Glutathione.
Should you have any questions, let me know.
Wishing you both well!
Niko
catscatscatscatscats, make sure your B12 injection is NOT Cyanocobalamin. Minimum health risks will not protect for health effects after repeated injections or delayed health effects, as the cyanide portion of it will bind with potassium from your body and create potassium cyanide,
a highly poisonous compound.
A better choice would be methylcobalamin, not used by clinics and doctors
mainly b/c of higher costs and ignorance, I suspect.
The are natural substitutes to Gabapentin, as it is a GABA analogue.
Broccoli, walnuts, brown rice, rice bran, potatoes, spinach, lentils, bananas, oranges, almonds, oats, beef liver, mackerel ,halibut, fish oil
green tea, contain GABA.
Avoid caffeine- a morning coffee is better tolerated- sugars including artificial, simple carbs, MSG and company-meaning all the different names the food industry uses to disguise it, so do a search- because they contribute to excitotoxicity that eventually leads to the formation of TNFa
group of chemicals implicated in many inflammatory and neurodegenerative conditions.
Talk to your naturopathic doctor about it.
There are many natural supplements that will help you with all the symptoms you are getting relief from,taking Gabapentin.
Some of these natural supplements are mentioned in a thread I started in the past titled "I will do this" ( see my previous reply also).
Also keywords to search : Leaky gut syndrome, GAPS, SCD-breaking the vicious cycle, EFT (emotional freedom techniques), Glutathione.
Should you have any questions, let me know.
Wishing you both well!
Niko
Hi to both of you.
PART1
I spoke to a lady I "accidentally" met yesterday, who has been suffering from FMS symptoms since 1979, following an accident in her 20's. She got diagnosed only after many years later and given various meds, which didn't help her a whole lot.
Last month she decided to take the plunge and see a naturopathic doctor
and within 4 weeks, she experienced phenomenal improvement.
She was put on a toxins (she said "plastics" were found in her body) and heavy metals detoxification and high quality supplementation among other things.
She hadn't felt like this in years!
The amazing thing is that this resembles my own situation so closely, with the only difference that I "escaped" from the medical system (I simply got fed up from being stuck on the medical merry-go-round as I was getting worse) studied holistic health and natural medicine on my own, to the level
where I was able to self-diagnose my so-called mystery disease and consequently self-treat to total and permanent remission within a short time. All this took place many years ago, following a nasty car accident.
I guess I was blessed with the ability and wisdom to seek the optimum
solution for my health. besides, I must confess, I'm a fast study for most things, specially in areas that involve health matters and personal growth.
END of PART1
PART1
I spoke to a lady I "accidentally" met yesterday, who has been suffering from FMS symptoms since 1979, following an accident in her 20's. She got diagnosed only after many years later and given various meds, which didn't help her a whole lot.
Last month she decided to take the plunge and see a naturopathic doctor
and within 4 weeks, she experienced phenomenal improvement.
She was put on a toxins (she said "plastics" were found in her body) and heavy metals detoxification and high quality supplementation among other things.
She hadn't felt like this in years!
The amazing thing is that this resembles my own situation so closely, with the only difference that I "escaped" from the medical system (I simply got fed up from being stuck on the medical merry-go-round as I was getting worse) studied holistic health and natural medicine on my own, to the level
where I was able to self-diagnose my so-called mystery disease and consequently self-treat to total and permanent remission within a short time. All this took place many years ago, following a nasty car accident.
I guess I was blessed with the ability and wisdom to seek the optimum
solution for my health. besides, I must confess, I'm a fast study for most things, specially in areas that involve health matters and personal growth.
END of PART1
I, too, am a young sufferer of FMS. I am 25 and had been experiencing symptoms since I was about 15, with the depression starting much younger. I see a naturopathic physician as well as an acupuncturist and a chiropractor (plus my regular conventional docs) and I feel like once I started looking more at the natural medicine aspect I started feeling a lot better. If you are only using the Cymbalta and going to physio, you probably won't have a HUGE deal of improvement. I use Gabapentin to help for my pain, anxiety, and parasthesias, but you really do have to address the smaller problems that create the large overall picture. Once you see a naturopath he/she can talk to you about all of the different natural options for you to try. Mine gives me regular B12 injections and has me on things like fish oil, probiotics, and magnesium.
I wish you luck!!
xoxo
I wish you luck!!
xoxo
Hi KelsInSA.
Oops, I overlooked the fact that mental fog, could be an issue in fully understanding what I'm trying to convey.
O.K. some simple advice without too much analysis.
-The most likely cause is underlying infections, possibly not easy to detect
with standard testing.
As a child did you suffer from any serious infectious conditions, that may have had some dormant remnants after you recovered, only to get re- activated in recent times?
You may be able to answer only the first part of this.
Candidiasis, a widespread fungal infection has to be ruled out as well.
-You may do the saliva test for Candida -YouTube search- very easy to do
on your own to indicate the presence of a fungal infection.
If positive, you will need to follow an anti-fungal diet - look it up online
and also take 2-3 Tablespoons of extra virgin organic coconut oil in place of other fats, specially cooking oils, which are pro-inflammatory!
EVCO is the greatest anti-fungal agent and also anti-parasitic, antimicrobial and anti-viral!
-Carbs could be your worse enemy. Go with a low carb diet, completely avoiding sugars-including artificial- breads, pasta,sweets, etc. for a couple weeks, as a test. If you feel much better after, you know why!
-Do a search in this community for "I will do this" for more recommendations.
Please post again or pm me if you need any details and to answer my question. I will follow up and continue with more suggestions.
Wish you well.
Niko
Oops, I overlooked the fact that mental fog, could be an issue in fully understanding what I'm trying to convey.
O.K. some simple advice without too much analysis.
-The most likely cause is underlying infections, possibly not easy to detect
with standard testing.
As a child did you suffer from any serious infectious conditions, that may have had some dormant remnants after you recovered, only to get re- activated in recent times?
You may be able to answer only the first part of this.
Candidiasis, a widespread fungal infection has to be ruled out as well.
-You may do the saliva test for Candida -YouTube search- very easy to do
on your own to indicate the presence of a fungal infection.
If positive, you will need to follow an anti-fungal diet - look it up online
and also take 2-3 Tablespoons of extra virgin organic coconut oil in place of other fats, specially cooking oils, which are pro-inflammatory!
EVCO is the greatest anti-fungal agent and also anti-parasitic, antimicrobial and anti-viral!
-Carbs could be your worse enemy. Go with a low carb diet, completely avoiding sugars-including artificial- breads, pasta,sweets, etc. for a couple weeks, as a test. If you feel much better after, you know why!
-Do a search in this community for "I will do this" for more recommendations.
Please post again or pm me if you need any details and to answer my question. I will follow up and continue with more suggestions.
Wish you well.
Niko
Hi, Nikodicreta
Thanks so much for responding :)
Yes, I am in South Africa.
My parents and I have been considering seeing a naturopathic doctor for a while now. I'm unfortunately a boarder away from home, so booking appointments have to wait for holidays.
When you said remission can be achieved by addressing the areas and systems that are affected, I just want to get it right quick, you mean it would be better to work on the areas that are affected individually? Instead of just taking the one medication that's supposed to help everything?
Sorry, I'm a little foggy from exams.
Thanks again! :)
Thanks so much for responding :)
Yes, I am in South Africa.
My parents and I have been considering seeing a naturopathic doctor for a while now. I'm unfortunately a boarder away from home, so booking appointments have to wait for holidays.
When you said remission can be achieved by addressing the areas and systems that are affected, I just want to get it right quick, you mean it would be better to work on the areas that are affected individually? Instead of just taking the one medication that's supposed to help everything?
Sorry, I'm a little foggy from exams.
Thanks again! :)
PART 2
Conventional medicine will offer treatment in the form of symptom management only and without any expectation of cure.
So if you are able and willing to pursue a holistic approach, then I suggest you seek a Holistic or Naturopathic doctor, to facilitate this for you.
It would be irresponsible for me to suggest that you can do this on your own, or even with my help or anyone else's here on the forum.
It requires a serious commitment from you, possibly some fundamental changes in lifestyle, various tests and continuous monitoring of certain markers, targeted supplementation and more. All this will take time!
Be prepared and stay strong.
You come across very mature for your age.
My feeling is that your health issues so far have contributed to this
and that you have grown a lot because of what you have been through.
You may be a great candidate for substantial improvement.
If you have any questions, please do not hesitate to post again
or you may send me a personal message.
Wish you well.
Niko
Conventional medicine will offer treatment in the form of symptom management only and without any expectation of cure.
So if you are able and willing to pursue a holistic approach, then I suggest you seek a Holistic or Naturopathic doctor, to facilitate this for you.
It would be irresponsible for me to suggest that you can do this on your own, or even with my help or anyone else's here on the forum.
It requires a serious commitment from you, possibly some fundamental changes in lifestyle, various tests and continuous monitoring of certain markers, targeted supplementation and more. All this will take time!
Be prepared and stay strong.
You come across very mature for your age.
My feeling is that your health issues so far have contributed to this
and that you have grown a lot because of what you have been through.
You may be a great candidate for substantial improvement.
If you have any questions, please do not hesitate to post again
or you may send me a personal message.
Wish you well.
Niko
Hi KelsInSA.
Are you from South Africa?
If yes, then I must say that I'm not very familiar with the health care system down there, but it sounds that it's a bit similar to Canada.
First, let me forewarn you that my views are contrarian- if conventional
medicine is considered "normal".
Example:
Conventional medicine has no medical cure for fibromyalgia (FMS).
Of course they have no cure for a Syndrome of symptoms as it's NOT a specific disease! and the causes are NOT known, only suspect!
My Views on this are that there's potential for full remission- if not complete cure. FMS is a systemic imbalance, caused by a number of possible factors, including neurotransmitter dysregulation, underlying infections,
gut dysbiosis, hormonal imbalance, deficiencies, allergies and sensitivities,
heavy metal toxicity and other.
Remission can be achieved by addressing the areas and systems of the body, commonly affecting the sufferer, along with investigating and treating
the aforementioned causative factors, once verified.
A holistic/naturopathic approach is most likely the best suited, in order to
expect any type of positive results.
END OF PART 1
Posts over 2000 words do not submit. MedHelp glitch!
Are you from South Africa?
If yes, then I must say that I'm not very familiar with the health care system down there, but it sounds that it's a bit similar to Canada.
First, let me forewarn you that my views are contrarian- if conventional
medicine is considered "normal".
Example:
Conventional medicine has no medical cure for fibromyalgia (FMS).
Of course they have no cure for a Syndrome of symptoms as it's NOT a specific disease! and the causes are NOT known, only suspect!
My Views on this are that there's potential for full remission- if not complete cure. FMS is a systemic imbalance, caused by a number of possible factors, including neurotransmitter dysregulation, underlying infections,
gut dysbiosis, hormonal imbalance, deficiencies, allergies and sensitivities,
heavy metal toxicity and other.
Remission can be achieved by addressing the areas and systems of the body, commonly affecting the sufferer, along with investigating and treating
the aforementioned causative factors, once verified.
A holistic/naturopathic approach is most likely the best suited, in order to
expect any type of positive results.
END OF PART 1
Posts over 2000 words do not submit. MedHelp glitch!
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