I No Longer Am Tired - Allergies/The Definition of M.E.

[xks201]

M.E. stands for myalgic encephalitis. Myalgia meaning 'muscle pain' and encephalitis meaning inflammation of the brain and spinal cord.

Labeling everyone with chronic fatigue as having M.E. is dangerous because not everyone with chronic fatigue has brain inflammation, spine inflammation, and muscle pain.

There are many doctors who are seeking one cause for all chronic fatigue. See the H2S hypothesis, or hypovolemia, or low serotonin, hormone deficiencies, or other chemical brain imbalance as examples. This is a dangerous label. CFS can have many causes. It is the job of the doctor (or if your doctors are unwilling to put in the time to properly diagnose you, it is your job) to find out the real root cause.

In my experience I know that when an allergic response is generated (this can involve mast cells), I get extremely tired. My only ostensible symptoms of dairy allergy (all dairy) were dizziness and fatigue. Anxiety and or ADHD seemed to be omnipresent in my life. Only when I began developing stomach inflammation in response to any dairy product (even a small slice of butter on a potato) did I begin to suspect a dairy allergy. I was not aware that an allergy could manifest itself ONLY as fatigue. I had no stomach issues.

I had intermittent allergic symptoms all my life. I remember mucous running down my throat once after drinking milk. At that point in my early life it did not cause fatigue though. I was a straight A student.

The symptoms morphed! From just phlegm in my throat in turned into fatigue for several years, and then after probably 10 years of off and on symptoms it turned into stomach inflammation with frequent bowel movements after exposure to dairy. Stomach bloating was also present.

I am on a lot of hormones probably because this undiagnosed allergy screwed with my endocrine system. I don't know if I wouldn't have needed to be on replacement hormones if I wasn't having constant allergic reactions to dairy.

Now if I eat dairy I am irritable and extremely sleepy for hours after even a tiny bit of butter. I can't eat most things outside of my house that I don't make because butter is used on a lot of things as are other dairy products.

I thought this personal anecdote would help illustrate the way allergic symptoms can mutate. They can be there, yet remain not severe. In my case at one point the only symptom was fatigue.

Earlier I have posted on how I began to feel better. Well that was cyclical (probably varying with my dairy exposure). Now I have been feeling good consistently.

Test yourself for allergies. Listen to your body. I went the long way and started putting bandaids on the problem. Eliminate the obvious but overlooked.

 

[Firestormm]

ME Stands for Myalgic Encephalomyelitis

 

[ukxmrv]

I think ME patients have been saying these things since CFS was invented. We used to talk about allergies in our pre-internet support groups. We used to talk about allergies in our groups before CFS was invented. It's a tragedy that so many patients are still being misdiagnosed.

How an allergy that causes fatigue as the primary symptom could be diagnosed by any doctor as M.E. (as per Ramsay) is a mystery to me. Yet the same thing happened to someone close to me. She had fatigue and also stomach issues all through her teens and into her 20's. Her mother took her to private doctors and eventually she was diagnosed with CFS and told that was the same as ME. She was never told which criteria was used and to me, it sounded like an idiopathic chronic fatigue with stomach issues. It sounds obvious to anyone in her family now that she should have considered her diet but although she saw many expensive, private doctors not one said anything like that.

Were you ever formally diagnosed with ME or CFS? When people talk about their misdiagnoses I always ask as it would help to know which criteria is allowing that particular other disease or condition to slip through.

I'm really glad that your fatigue is lifting and you have identified your triggers. I did a good year on non-diary and gluten free early on as I thought it was at least worth a try. A ENT doctor in my local hospital had noticed that a diary allergy was causing symptoms in children and was routinely suggesting a change in diet. He spoke at my local ME group. That was in the mid- 80's.

ME patients don't want people with idiopathic fatigue to be labelled with the same label. Why would we? It seems to be a subset of doctors and (in my experience) other health professionals. What a tragic waste of people's lives.

 

[maryb]

I totally agree about allergies causing fatigue - I can feel it immediately - also a sleepiness, for me it is ususally vegetables.
I am dairy/casein/sugar/gluten free for quite a few years now.

I still have FM and all the symptoms of ME, sore throat,inflamed spine,brain fog,fatigue.PEM etc etc.
But I also know I would be a lot worse if I went back on to the things that I'm intolerant to.

I mean we read the stories like those of Esther rantzen's daughter who went gluten free and was cured!!! Different illness.

 

[peggy-sue]

I have a friend diagnosed with "CFS". 10 years of suffering and life disruption, including sacrificing having children later, it was discovered that he had a heart problem and needed a pacemaker.
One pacemaker later, he is cured.

 

[Vordhosbn]

I would still want to understand why I've developed all these allergies and gut permeability. In my experience the allergies/intolerances haven't stopped at gluten and dairy, and the list is so long now I cannot reasonably avoid all of them.

 

[jeffrez]

I had bad allergies before having CFS and before having my mercury fillings taken out. I was never fatigued like this, and I didn't have PEM, either. Sorry, but allergy fatigue is not the same thing as CFS fatigue. I don't doubt that fatigue from allergy & histamine reactions can contribute to fatigue often experienced in CFS, but ultimately they're not the same thing. CFS fatigue is much, much more complicated than that, involving neuroendocrine systems and cell energy metabolism.

 

[Undisclosed]

Labeling everyone with chronic fatigue as having M.E. is dangerous because not everyone with chronic fatigue has brain inflammation, spine inflammation, and muscle pain.

There are many doctors who are seeking one cause for all chronic fatigue. See the H2S hypothesis, or hypovolemia, or low serotonin, hormone deficiencies, or other chemical brain imbalance as examples. This is a dangerous label. CFS can have many causes. It is the job of the doctor (or if your doctors are unwilling to put in the time to properly diagnose you, it is your job) to find out the real root cause.

I don't believe everyone with 'chronic fatigue' is labelled as having ME. Fatigue is a symptom. In most cases the cause of fatigue can be identified when one is ill. It's when a person has fatigue that is long lasting without any identifiable cause that the label 'Chronic Fatigue Syndrome' gets attached. In this day and age, when a doctor attaches the label 'Chronic Fatigue Syndrome' to a person who has undiagnosed allergies, undiagnosed food intolerances, black mold in their homes, undiagnosed hormonal imbalances etc, I would suggest they haven't done their work and are lazily attaching a label to suit their own needs rather than the needs of the patients. It's also likely true that once you get the diagnosis of 'CFS' it gives some doctors the justification to refuse any more testing because it has no known cause or worse yet, you get fobbed off onto psychiatrists because if your test results are negative then you must be making it up so you end up getting no treatment for the illness you are experiencing. You might get some help coping with having a chronic illness but that doesn't aid in finding a cause, getting a proper diagnosis and if you are lucky finding a treatment that works.

The problem is 'chronic fatigue' is not meant to be synonymous with 'chronic fatigue syndrome'. We know that but most doctors seem to woefully ignorant of this and this is why the name 'chronic fatigue syndrome' needs to be obliterated as a diagnosis for anybody. There will never be 'one cause' for 'chronic fatigue' because it's a symptom that can arise from thousands of causes. This why a study that focuses related to CFS on fatigue alone will never produce reliable results because you will have subjects in the study with a gamut of undiagnosed illnesses.The same goes for studying pain and fatigue together. When you make 'chronic fatigue' synonymous with 'chronic fatigue syndrome' and then make the two synonymous with ME, it will all remain a muddied, non-researchable mess.

It's likely true people are misdiagnosed because the label CFS exists especially when doctors look at some of the criteria. They can't seem to get by the '6 months' of chronic fatigue thing and since they are woefully uneducated in medical school, they are going to be diagnosing all sorts of things as chronic fatigue syndrome that aren't because they can't see beyond standard tests. It shouldn't be up to patients to have to ' Eliminate the obvious but overlooked.' That should be the job of the doctors but I guess in this day and age most doctors seem to adhere to 'standard testing' and easy answers. The health care system is sick and needs to be fixed. The best doctors who treat CFS are those who are willing to go outside of the box and go beyond standard testing. It should be the rule rather than the exception in this day and age. It's a tragedy when people spend years being ill because the illness goes undiagnosed due to poor investigation, and the ease of diagnosing somebody with CFS. It's even more tragic that the patients have to hunt down their own cures because doctors are too stuck in the status quo. In the medical world, it should be if a person is complaining of fatigue or any other symptom, then the doctor must hunt down the cause rather than stopping after standard tests come up normal. I know where I live, it's all about money, money, money. Testing is too expensive for the government -- I don't much like being a dollar value -- or it has to be private and some of us don't have thousands upon thousands of dollars to spend on the necessary testing.

 

[xks201]

I would still want to understand why I've developed all these allergies and gut permeability. In my experience the allergies/intolerances haven't stopped at gluten and dairy, and the list is so long now I cannot reasonably avoid all of them.

Well, if allergies were ruled out I would no doubt start by measuring all hormones (and aiming for a healthy side of the reference range). Virtually any hormone deficiency can cause chronic fatigue. The endocrine system controls the immune system.

I was also found to be growth hormone deficient. This has improved my sleep like nothing else. If I miss a day's dose of growth hormone I literally will have like four hours of shallow sleep. With GH I sleep like 10 hours (I am still fairly young).

Vordhosbn check this out http://drplechner.com/learn/allergies/food-sensitivities/

 

[cosmo]

This is so interesting to me.

I believe there is something else causing this in me, my cfs consultant believes everyone is the same and ME and CFS is the same thing, I never knew it was different. All patients have the very same treatments too.

The problem is, is getting someone who wants to help you find out what it is and not just dismissing there could be something else.

 

[valentinelynx]

I wasn't allergic to anything until my sudden onset illness (the "CFS"). Suddenly, I had widespread allergies.

 

[beaker]

I don't believe everyone with 'chronic fatigue' is labelled as having ME. Fatigue is a symptom. In most cases the cause of fatigue can be identified when one is ill. It's when a person has fatigue that is long lasting without any identifiable cause that the label 'Chronic Fatigue Syndrome' gets attached. In this day and age, when a doctor attaches the label 'Chronic Fatigue Syndrome' to a person who has undiagnosed allergies, undiagnosed food intolerances, black mold in their homes, undiagnosed hormonal imbalances etc, I would suggest they haven't done their work and are lazily attaching a label to suit their own needs rather than the needs of the patients. It's also likely true that once you get the diagnosis of 'CFS' it gives some doctors the justification to refuse any more testing because it has no known cause or worse yet, you get fobbed off onto psychiatrists because if your test results are negative then you must be making it up so you end up getting no treatment for the illness you are experiencing. You might get some help coping with having a chronic illness but that doesn't aid in finding a cause, getting a proper diagnosis and if you are lucky finding a treatment that works.

The problem is 'chronic fatigue' is not meant to be synonymous with 'chronic fatigue syndrome'. We know that but most doctors seem to woefully ignorant of this and this is why the name 'chronic fatigue syndrome' needs to be obliterated as a diagnosis for anybody. There will never be 'one cause' for 'chronic fatigue' because it's a symptom that can arise from thousands of causes. This why a study that focuses related to CFS on fatigue alone will never produce reliable results because you will have subjects in the study with a gamut of undiagnosed illnesses.The same goes for studying pain and fatigue together. When you make 'chronic fatigue' synonymous with 'chronic fatigue syndrome' and then make the two synonymous with ME, it will all remain a muddied, non-researchable mess.

It's likely true people are misdiagnosed because the label CFS exists especially when doctors look at some of the criteria. They can't seem to get by the '6 months' of chronic fatigue thing and since they are woefully uneducated in medical school, they are going to be diagnosing all sorts of things as chronic fatigue syndrome that aren't because they can't see beyond standard tests. It shouldn't be up to patients to have to ' Eliminate the obvious but overlooked.' That should be the job of the doctors but I guess in this day and age most doctors seem to adhere to 'standard testing' and easy answers. The health care system is sick and needs to be fixed. The best doctors who treat CFS are those who are willing to go outside of the box and go beyond standard testing. It should be the rule rather than the exception in this day and age. It's a tragedy when people spend years being ill because the illness goes undiagnosed due to poor investigation, and the ease of diagnosing somebody with CFS. It's even more tragic that the patients have to hunt down their own cures because doctors are too stuck in the status quo. In the medical world, it should be if a person is complaining of fatigue or any other symptom, then the doctor must hunt down the cause rather than stopping after standard tests come up normal. I know where I live, it's all about money, money, money. Testing is too expensive for the government -- I don't much like being a dollar value -- or it has to be private and some of us don't have thousands upon thousands of dollars to spend on the necessary testing.

Thank you Kina. I think this can't be said enough.
I also think that those outside the states, don't understand at all that what is called CFS by the doctors who Know
aka peterson, bell, cheney, klimas , etc..., is the same as ME. CFS was just some BS name the CDC came up with for political reasons.