Aa
New to fibromyalgia and confused
I have been diagnosed with post viral syndrome which is from what I understand like chronic fatigue and fibromayalgia had a baby.
I don't even know why I am posting this....maybe for a "hey....welcome to the club!" I dunno
I have been relentlessly pursuing a diagnosis for a year with countless doctors and specialists.....I have been called crazy and asked to "just chill" and delusional was my favourite.
Symptoms include:
Extreme fatigue
Itching all over body or isolated to some areas
Burning in eyes, nose, mouth,tongue
Scalp pain
Burning nerves come and go
Tightening pain by my rib cage
Pain in my legs
Numbness
Muscle twitches
Skin super sensitive
Bad short term memory
Lack of concentration
Restless legs at night
Aches in joints without swelling or redness
Anyway some questions:
1). If I want to get meds for fibromayalgia which are the best ones and what dr or specialist is best to see?
2). I have herpes simplex 1 virus.....that's what brought on post viral syndrome....with similar pro dome and fibromayalgia symptoms how can I tell which is which?
3). I seem to be more prone to skin irritations now like eczema and foliculitis and dry patches....has that happened to anyone?
4). Symptoms do seem a bit better, any natural supplements recommended?
I don't even know why I am posting this....maybe for a "hey....welcome to the club!" I dunno
I have been relentlessly pursuing a diagnosis for a year with countless doctors and specialists.....I have been called crazy and asked to "just chill" and delusional was my favourite.
Symptoms include:
Extreme fatigue
Itching all over body or isolated to some areas
Burning in eyes, nose, mouth,tongue
Scalp pain
Burning nerves come and go
Tightening pain by my rib cage
Pain in my legs
Numbness
Muscle twitches
Skin super sensitive
Bad short term memory
Lack of concentration
Restless legs at night
Aches in joints without swelling or redness
Anyway some questions:
1). If I want to get meds for fibromayalgia which are the best ones and what dr or specialist is best to see?
2). I have herpes simplex 1 virus.....that's what brought on post viral syndrome....with similar pro dome and fibromayalgia symptoms how can I tell which is which?
3). I seem to be more prone to skin irritations now like eczema and foliculitis and dry patches....has that happened to anyone?
4). Symptoms do seem a bit better, any natural supplements recommended?
Thank you all....I am afraid I have no more fight left at times
This road is long
This road is long
I have Fibromyalgia, I finally found the right Dr to see. He is a Pain management Dr. Please be careful when you look for a pain management Dr. Make sure they have anesthiologist and some neurologist background. My Dr. is fantastic and changed my life. I have hardly any pain. He does back injections and all trigger point injections for my fibromyalgia that is amazing how it works. He will also give you pain meds but try's to balance it out with other methods of relief. I have met some of his patient that come from other states. He is that good. So good luck to you and I pray that you find a Dr like mine.
Dr. Lowe from the Fibromyalgia Research Foundation supports the premise that most fibromyalgia patients are either hypothyroid or thyroid hormone resistant.
The list of low thyroid function symptoms is pathetically long!
Have you ever been tested for thyroid function?
The preferred tests to get for accurate thyroid function are: Free T3,Free T4 and reverse T3.
As a screening test for low thyroid, you can do Dr. Barnes Basal Temperature Test, the golden standard until synthetic thyroid supplements and new serum testing got invented (same corporation) and now half the patients around the world (exaggerated-lol!) are running around from doctor to doctor and from test to test, most of them underdiagnosed, undiagnosed, misdiagnosed, and consequently under- treated, untreated or worse, mistreated!
Dr Barnes and most of his his students today like Dr. Mark Starr who practice according to his methods, after diagnosing and treating their patients properly for hypothyroidism, develop almost: no lupus, no fibromyalgia-like conditions, no chronic fatigue, no heart disease...
It is beyond me, how conventional medicine, has managed to keep a lid on such amazing and groundbreaking work, considering the great significance of our hormonal system, which controls every aspect of our health.
Viral load and unresolved stress factors significantly increase your risk to
pathogenic bacterial, parasitic or fungal infections, by lowering your immunity.
There's the possibility of low grade pathogenic mycoplasma and co-infections, which unfortunately are very common with the majority of CFS and FMS sufferers, according to the leading expert in this field, Dr. Garth Nicolson.
He is a part time MedHelp contributor and you can do a search here, for more details.
These infections are notoriously difficult to detect and to treat!
Your doctor won't know much about this either.
If you need more information on this or anything else, let me know.
Best wishes.
Niko
CFS is also known as ME although as you can read on the hummingbird website they don't like that distinction! But Chronic Fatigue is typically known as post viral syndrome. When I feel lazy (most of the time I am lol) I post info from websites. Feeling pretty good now after eating a few cheese and crackers. :)
http://www.medhelp.org/forums/Chronic-Fatigue-Syndrome/show/1209
http://www.medhelp.org/forums/Chronic-Fatigue-Syndrome/show/1209
My interpretation of what red_star is saying is that a "diagnosis" of fibro, CFS, or post-viral syndrome are all, in a way, non-diagnoses. That is because a syndrome is really just a collection of symptoms, being told you have a syndrome does not identify the underlying cause of those symptoms.
I'm very sorry that you are in this "club." It can be very difficult to find treatments that are helpful. There are no magic bullets, some people find some relief on medications like lyrica. Others find particular diets to be helpful, such as an anti-inflammation diet, or trying an elimination diet to figure out what (if any) foods irritate your symptoms.
Letting go of what doesn't really matter and focusing your time and energy on what's most important is another coping mechanism. If your energy is limited, then you may care less about dust on the bookshelf and more about taking a walk with your family, for example. Dealing with CFS or fibro, it helps to stop sweating the small stuff.
Best wishes...
I'm very sorry that you are in this "club." It can be very difficult to find treatments that are helpful. There are no magic bullets, some people find some relief on medications like lyrica. Others find particular diets to be helpful, such as an anti-inflammation diet, or trying an elimination diet to figure out what (if any) foods irritate your symptoms.
Letting go of what doesn't really matter and focusing your time and energy on what's most important is another coping mechanism. If your energy is limited, then you may care less about dust on the bookshelf and more about taking a walk with your family, for example. Dealing with CFS or fibro, it helps to stop sweating the small stuff.
Best wishes...
This info is from Net Doctor...
"Fibromyalgia has some similarities with chronic fatigue (post viral) syndrome or ME (myalgic encephalomyelitis). However, unlike fibromyalgia sufferers, those with ME may have had a preceding viral infection. ME patients feel less pain but are more tired and lethargic."
"Fibromyalgia has some similarities with chronic fatigue (post viral) syndrome or ME (myalgic encephalomyelitis). However, unlike fibromyalgia sufferers, those with ME may have had a preceding viral infection. ME patients feel less pain but are more tired and lethargic."
This information is from the Hummingbird website (which is about Myalgic Encephalomyelitis). You can read more on their website if you are interested...
"A diagnosis of ‘CFS’ does not mean that a person has any distinct disease (including M.E.). The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a ‘CFS’ (mis)diagnosis. Every diagnosis of ‘CFS’ can only ever be a misdiagnosis.
However, while 'CFS' is not a genuine diagnosis, those given this misdiagnosis are in many cases significantly or even severely ill and disabled, with conditions including:
Various post-viral fatigue states/post-viral fatigue syndromes (eg. following glandular fever/mononucleosis, hepatitis, Ross river virus, Q fever, flu, measles, chickenpox, herpes and many other infections)
Fibromyalgia
Candida
Athlete over-training syndrome
‘Burnout’
Multiple chemical sensitivity syndrome (MCSS)
Multiple sclerosis
Thyroid illness
Adrenal insufficiency
Localised and Metastatic malignancies
Brain tumours, including astrocytomas, gliomas
Transverse Myelitis
Myopathic illnesses including: Myasthenia gravis, Mitochondrial myopathies, Post-infectious polymyositis
Vitamin B12 deficiency disorders: Pernicious anaemia, Intentional dietary deprivation, Intestinal disease associated with or independent of M.E.
Rheumatoid illness or lupus (SLE)
Sarcoma
Renal or liver disease
Infectious illnesses including: Toxoplasmosis, AIDS, Lyme disease (Borrelia burgdorferi), Tuberculosis, Brucellosis
Various psychiatric and social psychiatric states including: Anxiety neurosis, Uncomplicated endogenous or reactive depression, Clinical depression, Psychopathic personality disorder, Post-traumatic stress disorder (PTSD), Schizophrenia and other psychiatric disease.
Myalgic Encephalomyelitis is not merely a symptom, or a syndrome, but is instead a distinct disease. It has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disease with the code G93.3. Myalgic Encephalomyelitis is a systemic acutely acquired illness initiated by a virus infection which is characterised by damage to the brain stem (a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions) which results in dysfunctions and damage to many of the body’s vital systems and a loss of normal internal homeostasis."
"A diagnosis of ‘CFS’ does not mean that a person has any distinct disease (including M.E.). The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a ‘CFS’ (mis)diagnosis. Every diagnosis of ‘CFS’ can only ever be a misdiagnosis.
However, while 'CFS' is not a genuine diagnosis, those given this misdiagnosis are in many cases significantly or even severely ill and disabled, with conditions including:
Various post-viral fatigue states/post-viral fatigue syndromes (eg. following glandular fever/mononucleosis, hepatitis, Ross river virus, Q fever, flu, measles, chickenpox, herpes and many other infections)
Fibromyalgia
Candida
Athlete over-training syndrome
‘Burnout’
Multiple chemical sensitivity syndrome (MCSS)
Multiple sclerosis
Thyroid illness
Adrenal insufficiency
Localised and Metastatic malignancies
Brain tumours, including astrocytomas, gliomas
Transverse Myelitis
Myopathic illnesses including: Myasthenia gravis, Mitochondrial myopathies, Post-infectious polymyositis
Vitamin B12 deficiency disorders: Pernicious anaemia, Intentional dietary deprivation, Intestinal disease associated with or independent of M.E.
Rheumatoid illness or lupus (SLE)
Sarcoma
Renal or liver disease
Infectious illnesses including: Toxoplasmosis, AIDS, Lyme disease (Borrelia burgdorferi), Tuberculosis, Brucellosis
Various psychiatric and social psychiatric states including: Anxiety neurosis, Uncomplicated endogenous or reactive depression, Clinical depression, Psychopathic personality disorder, Post-traumatic stress disorder (PTSD), Schizophrenia and other psychiatric disease.
Myalgic Encephalomyelitis is not merely a symptom, or a syndrome, but is instead a distinct disease. It has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disease with the code G93.3. Myalgic Encephalomyelitis is a systemic acutely acquired illness initiated by a virus infection which is characterised by damage to the brain stem (a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions) which results in dysfunctions and damage to many of the body’s vital systems and a loss of normal internal homeostasis."
Oh I forgot , my fave, tremors, ringing in ears, and feeling like an earthquake has hit as I am waking up from sleep
MRI negative!
MRI negative!
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Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
