Misdiagnosis of CFS -
Chronic Fatigue Syndrome
A misdiagnosis of CFS is a natural concern for any of us diagnosed with Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (aka M.E).
This CFS article is for you if you are asking or saying:
- "What if I have a different illness than Chronic Fatigue Syndrome?"
- "Could a different chronic illness be the cause of CFS symptoms?"
- "I want to check that I am not misdiagnosed with CFS, because I worry that there is a treatment out there that I could be getting."
Below, I give a list of other chronic illnesses with some overlapping
symptoms to those of CFS.
For some or them, tests and treatment are available.
For others, as for CFS, alternative healing methods are the only
treatments available. If there is no additional treatment, there may be little advantage to
receiving another diagnosis.
Please note that there are other illnesses and conditions which should have been excluded before a diagnosis of Chronic Fatigue Syndrome was given.
Your medical practitioner should have arranged neurological tests and blood tests. Possibly you will have been given an EEG, an ECG and even a MRI scan.
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Why is there a risk of misdiagnosis of CFS?
For the following reasons a misdiagnosis of CFS Chronic Fatigue Syndrome or Myalgic Encephalomyelitis is possible:
- Currently Chronic Fatigue Syndrome causes are not known, despite the fact that the illness affects over
250, 000 people in the UK alone.
- The possibility of
finding a CFS cause is hampered by a lack of agreement about the symptoms needed to be
diagnosed with CFS.
- Chronic fatigue (not the syndrome) is a symptom of many different illnesses, and can sometimes be resolved
fairly easily, for example if lack of sleep, hypoglycemia, or poor
nutrition are responsible.
There is a risk that someone presenting
with chronic fatigue may incorrectly be given a Chronic Fatigue Syndrome diagnosis.
- As long
as there is no blood test or other clear diagnostic marker for this
chronic illness, there is a risk of misdiagnosis of CFS - Chronic Fatigue Syndrome.
Move from Do I have a Misdiagnosis of CFS? to read about the criteria and symptoms which are necessary for a diagnosis of CFS.
Contents for this article on Have I been Misdiagnosed with Chronic Fatigue Syndrome?
Please scroll down to read each of the following.
- Chronic Illnesses to exclude when asking if you have been misdiagnosed with Chronic Fatigue Syndrome
- Diet related conditions which can lead you to be misdiagnosed with CFS
- Deficiencies that can lead to a potential misdiagnosis of Chronic Fatigue Syndrome
- Environmental cause leading to a potential misdiagnosis of CFS
- Other issues to exclude as a cause of fatigue and other symptoms
A chronic illness with overlapping symptoms may lead to misdiagnosis of CFS
Chronic Illnesses to exclude when considering a diagnosis of Chronic Fatigue Syndrome include the following:
- Adrenal Fatigue
It is unclear if adrenal fatigue is the same thing as a Chronic Fatigue Syndrome diagnosis or something different.
with adrenal fatigue often talk of having burned out and seem less
likely than those with CFS/ME to talk of an illness as being the
trigger. The only treatment is through complementary healing methods.
- Addison disease is an adrenal disorder which may follow extreme physical training over an extended period. The adrenal gland shuts down totally and can be life-threatening.
It is treatable through continual replacement of
- Ehlers-Danlos (EDS)
Consider Ehlers Danlos if your joints are hyper mobile and you bruise easily.
There may be a link between EDS and Mast Cell disorders.
- Mast Cell Activation Syndrome
Pam on twitter kindly suggested I add Mast Cell Activation Syndrome
to the list. It is a term used increasingly from around 2010. The
symptoms appear to overlap with those of allergy. Please do your own
research. It appears that testing is possible.
Investigate Mast Cell Activation if you have sleep problems, allergies and brain fog.
Also "histamine can mimic symptoms of anxiety and trigger depression and other psychiatric conditions"
Quote from... https://healinghistamine.com/how-histamine-affects-sleep/
Research from... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3753019/
- Lyme Disease
Consider Lyme disease if you might have been bitten by a tick.
Katina Makris wrote the book Out Of The Woods about her experience with a long-term illness at
one point diagnosed as Chronic Fatigue
Syndrome which turned out to be Lyme disease.
Her re-diagnosis with Lyme disease didn't lead to any quick or easy solution, but as a result
of treating it with complementary / alternative healing methods, she is back on her feet again.
- Sjögren's Syndrome
Sjögren's if you experience dry eyes. Even if you don't have
Sjögren's Syndrome you might like to check out this article on foods that help dry eyes.
I know someone who had an operation for Sjögren's and recovered her energy.
Dry eyes can also be a symptom of health problems due to mould exposure.
Depression is a serious condition. It is often accompanied by chronic fatigue, but not by the full range of symptoms of CFS.
have met two men who thought they had CFS/ME but recovered their energy
within a year and concluded that they had had depression.
is commonly experienced by people with CFS/ME, so you can have both. I consider depression to be a
frequent consequence or symptom of CFS/ME.
If you have depression on its own, then it may help to increase your level of exercise. If your depression is relieved by exercise, then you don't have the key Chronic Fatigue Syndrome symptom of post-exertional malaise.
- Chronic Pain Syndrome (Type #CPS to find Chronic Pain Syndrome sufferers on twitter).
am not clear yet if the presence of Chronic Pain Syndrome indicates a
misdiagnosis of CFS or if this is potentially a diagnosis you might have
in addition to one of CFS. Please note that chronic pain is a common
symptom of Chronic Fatigue Syndrome or Myalgic Encephalomyelitis.
There is no clear treatment protocol for Chronic Pain Syndrome.
Weakness is a key symptom of Myasthenia Gravis and might lead to misdiagnosis
of CFS or Myalgic Encephalomyelitis. Blood tests and treatment are available.
Symptoms can include
a drooping of one or both eyelids, difficulty in swallowing, a changed facial
expression, double or blurred vision, unstable walking, shortness of
breath, impaired speech (dysarthria), and weakness in the arms, hands, fingers,
legs, and neck.
- Postural orthostatic tachycardia syndrome
Why do I feel dizzy when I stand up?
is often an overlapping condition rather than a misdiagnosis of CFS.
Studies from both the UK and Australia indicate that PoTS is found in up
to one third of people with ME /CFS.
Consider PoTS if you are
usually dizzy when you stand up and even possibly when you are lying
down (- I used to be!) PoTS is due to your heart rate increasing by 30
beats per minute as you stand up.
Alternatively dizziness on standing can be due to a drop in blood pressure - this is called orthostatic hypotension. Dizziness is also a common symptom of hypoglycemia.
cause of PoTS is not known. Ask your medical practitioner if any
treatment is available. Visit www.potsuk.org for more
- Multiple Sclerosis
diagnosis was changed from Myalgic Encephalomyelitis to Multiple Sclerosis. Many symptoms overlap, including chronic fatigue.
- Undifferentiated Connective Tissue Disease (UCTD)
symptoms include aching joints, low grade fever, dry eyes, and a rash
in response to being out in the sun. Someone has advised me that she was
misdiagnosed as CFS and was later diagnosed with UCTD. However, fatigue is not
listed as a symptom.
Please do your own research. You can read more about UCTD here.
Diet related conditions which can lead to a potential misdiagnosis of Chronic Fatigue Syndrome
It is well worth checking to see if a change to your diet can relieve the symptoms of Chronic Fatigue Syndrome.
- Food allergies
Food allergies can be tested for.
- Food sensitivities
I know someone who cut out various foods and has experienced long term recovery as a result
- Coeliac disease
with coeliac disease are tired all the time because they are not
absorbing nutrients from the food. They experience amazing relief from
cutting out gluten to which they are intolerant. Coeliac disease often goes undiagnosed. There is a test for coeliac disease. Food allergies and food sensitivities
Both food allergies and food sensitivities can cause serious symptoms including chronic fatigue.
With a food sensitivity you may not notice feeling
worse after eating a certain food.
hypoglycemia if you need to eat frequently and experience
dizziness if you do not eat frequently. Reactive hypoglycemia is often a symptom not a cause of
Chronic Fatigue Syndrome. Hypoglycemia is a prevalent symptom for people with CFS/ME. It is well worth adjusting your eating patterns to see if you experience relief.
- Aspartame poisoning
If you drink a lot of fizzy drinks or
sodas, consider aspartame poisoning.
- Leaky Gut Syndrome or intestinal permeability and Irritable Bowel Syndrome
Leaky Gut is often mentioned by alternative practitioners. The NHS is unconvinced by this health label and unconvinced by the claims made for diets that can help.
In contrast, the NHS take Irritable Bowel Syndrome IBS seriously and offers advice.
Consider that you may have IBS, and therefore a misdiagnosis of CFS, if fatigue is accompanied by bloating, diarrhoea, constipation and stomach cramps.
Advice for gut health includes eating fermented foods like kefir and avoiding unnecessary antibiotics.
Deficiencies that can lead to a potential misdiagnosis of Chronic Fatigue Syndrome
- Underactive thyroid
when a thyroid test comes back as normal, some people have found that
their symptoms disappear when treated for thyroid deficiency.
Tears Behind Closed
Doors is a book written by a woman diagnosed with Chronic Fatigue Syndrome who turned out to have thyroid deficiency. After treatment, she experienced a new lease of life in her later years.
Missing the outer third of your eyebrow can be a symptom of thyroid issues.
here to take the Quiz:
Do I have a thyroid problem
Or cut and past this link for an article on ME/ CFS and the thyroid.
- B12 deficiency
People with B12 deficiency share many Chronic Fatigue Syndrome symptoms.
A misdiagnosis of CFS is possible. B12 deficiency is probably not
tested for enough and is therefore under-diagnosed in the UK and
Click through to a colleague's website to read about the symptoms of B12 deficiency.
the possible causes of B12 deficiency are exposure to toxins, the
presence of an autoimmune disease, or the taking of certain drugs,
including undergoing chemotherapy.
- Hormone Deficiency
I have read two accounts of hormone deficiency causing CFS symptoms lately. This is a new one on me. For those in the UK, there is a "London Hormone Clinic". Referral is possible although I don't know how hard it is to get it. One potential treatment is bespoke bioidentical hormone lozenges which you have to pay for yourself. HRT may be an option for some.
Peri-menopausal symptoms (or menopausal symptoms)
symptoms can include fatigue, insomnia, joint pain, memory lapses and
mood swings. If you are female, of a certain age, and your periods have
become irregular or stopped, consider that you may be peri-menopausal.
However, you are unlikely to experience the key CFS symptom of post
Environmental cause leading to a potential misdiagnosis of CFS
As with so many other possible causes of CFS, the following diagnoses may replace or go alongside a CFS diagnosis. Avoidance of environmental factors brings great relief to many but can be difficult to achieve in the modern world.
- Multiple Chemical Sensitivity (MCS)
The body produces symptoms in response to some of the chemicals in every day domestic products. Consider MCS if you have been exposed to toxins such as amalgams or chemical spraying.
- Can mold cause illness? = Can mould cause illness? (UK english spelling)
A reaction to mould toxins can lead to a possible misdiagnosis of CFS. Consider this if you have mould in the house.
toxins become a more likely cause of CFS symptoms if more than one
member of your household has a diagnosis of Chronic Fatigue Syndrome or
Myalgic Encephalomyelitis, or if you notice that your symptoms reduce
greatly when you stay elsewhere.
To find out more, search online for the names of Dr Jack Thrasher,
Dr Shoemaker, Dr Janette Hope or Dr David Ross. These doctors have done research in the subject of mold as a cause of illness.
AVOIDANCE is the first bit of advice, but there are also detoxification protocols you can follow.
Other issues to exclude as a cause of fatigue and other symptoms
- Neck injury
A neck injury - even a minor one - can cause symptoms such as chronic fatigue, dizziness and nystagmus.
Symptoms of a neck injury may result from impaired blood flow to the brain.
(What is nystagmus? - Nystagmus is a constant uncontrolled movement of the eyes which may not be visible to the observer.)
think - please do your own research- that the Perrin technique works on
the theory that a misdiagnosis of CFS may follow on from a back or neck
injury. The treatment is gentle physiotherapy.
- Functional neurological symptoms
Consider this if you experience involuntary movements.
A friend sent me to this website by a neurologist explaining some FNS conditions which may lead to a misdiagnosis of CFS.
neurologist (and webmaster) suggests that you might have more luck
finding treatment for CFS than for functional neurological symptoms. Even if you relate to the symptoms he outlines, you may still
choose to accept your diagnosis of CFS, ME or Fibromyalgia.
Dystonia and NEAD (Non epileptic attacks) are related diagnoses.
Laboratory tests may play a part in a diagnosis of dystonia.
Haemochromatosis is a genetic condition also known as the Celtic curse. The condition leads to tiredness and joint pain with easily depleted energy levels. It is due to high levels of iron in the blood. Blood tests can reveal the condition and it is treated/ managed by the patient giving blood at regular intervals. Male and female can be carriers of the gene, but the illness only affects the females. Haemochromatosis sometimes leads to a misdiagnosis of CFS.
Read more at https://www.bbc.co.uk/news/uk-northern-ireland-43245267
It's okay to accept a Chronic Fatigue Syndrome diagnosis
A final note if you are wondering if you have a misdiagnosis of CFS (Chronic Fatigue Syndrome).
Your symptoms may be horrible.
You may have trouble believing that you could be so ill without a clear treatment protocol.
But this is the reality for many people living with Chronic Fatigue Syndrome.
of the chronic illnesses listed above are similar to CFS in that they too
have no clear diagnostic marker and no clear treatment pathway.
you have been given a Chronic Fatigue Syndrome diagnosis by a
medical practitioner, you may choose to accept this diagnosis, follow
the advice, and find the biggest life you can whilst living with CFS.
might also choose to pursue alternative healing. Please know that many people with a clear
diagnosis such as cancer still choose to pursue alternative or complementary healing methods.
Whether you choose to challenge your Chronic Fatigue Syndrome diagnosis or live with it,
I wish you every blessing.
Wishing you healing both within and beyond illness,
Katherine T Owen
Katherine is author of this website www.HealingCFSME.com
She is author of Be Loved, Beloved (lulu.com or kindle)
The cause of Chronic Fatigue Syndrome and Myalgic Encephalomyelitis is not known. Nonetheless, those of us living with the illness often get asked the question: What is the cause of CFS?
Click through to read some suggestions of how to answer this question.
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