What is chronic fatigue syndrome/ME?
Chronic fatigue syndrome (CFS)/ME is a condition that causes marked long-term tiredness (fatigue) and other symptoms which are not caused by any other known medical condition.

CFS stands for chronic fatigue syndrome. Chronic means persistent or long-term.
ME stands for myalgic encephalomyelitis. Myalgic means muscle aches or pains. Encephalomyelitis means inflammation of the brain and spinal cord.
However, there is controversy about the nature of this condition. There is no test to diagnose the condition. The diagnosis is made in people who have a certain set of symptoms (which can vary in their type and severity). There is even controversy about what to call this condition.

The term CFS is often used by doctors. This is because the main symptom is often fatigue and the condition is chronic (persistent). There is also disagreement on the presence of inflammation in the brain or spinal cord which is implied by the term encephalomyelitis.
The term ME is the preferred term by many people with the condition. Some people with this condition feel that the word fatigue is an everyday word which does not reflect the different and severe type of fatigue that they have. Also, although fatigue to some extent occurs in most cases, it may not be the main or only symptom.
Some people believe that there are two separate conditions - CFS and ME. Other people believe that the two conditions are the same - but symptoms can vary.
Until these issues are resolved, many people now use the umbrella term of CFS/ME.

Insulin resistance has NOTHING to do with a glucose tolerance test. The only way to diagnose it is symptoms and a FASTING INSULIN TEST.

I seriously cannot find a decent list of symptoms.

Craving sweets.
Not feeling full, even after having just eaten.
Feeling hungrier AFTER eating than before.
Feeling like any meal needs a sweet ending to feel finish.
Getting sleepy after a meal.
high triglycerides with or without low hdl
fatigue
no energy
only feeling energetic after a burst of sugary foods
headaches
discoloration of neckline, arm pits, inner elbows, knees, etc.
Skin tags
Difficulties sleeping, waking, or functioning

And a million other things I can't think of off hand...

You know Lise, something else occurs to me. Aside from the weird "third shift sleep displacement disorder" stuff they talk about, which I don't know why we haven't mentioned yet, have you been tested for sleep apnea? That sleeping forever bit reminded me of how I felt when my doc bullied me into getting tested.

Also, remember that just because your levels on a blood test are "in range," that might not be a healthy range FOR YOU.... I know you can't just switch doctors there, but you need to get a doctor who is willing to look at your symptoms and realize that not everything shows up properly on blood tests.

My PCP told me she thought I had thyroid problems over 7 years before it showed up on a test, and even that was barely enough for an endocrinologist without my 10 year history of numbers to blink at. He told my my PCP was a whack job. Fast forward to an new endo, and all that, and he literally applauded my PCP for keeping a watch on things. He told me that thyroid problems can take nearly a decade to show up on standard tests, and by then, you're usually already in a horrible destructive pattern. There is a comprehensive panel that gives a better picture, but it is really rare for someone other than a specialist to run a whole panel. Most docs run the one level and think that tells them what they need, when it is really only like having 1 corner piece to a rectangular puzzle...and trying to put it together without the picture and 10,000 tiny pieces...

Skin tags are supposedly one of the earliest signs of it, though it isn't fully medically accepted. The skin discoloration is after years and years and years or overworking the pancreas and some biproduct it creates. So early sign and deep condition sign...

I know my diagnosis as Insulin Resistant was a shock, but it actually explained a lot... And it can trigger/CAUSE a ton of other problems. It is likely that my IR came before my PCOS, and either contributed to it or possibly triggered/caused it. It is also likely that my hypothyroidism is a development of the untreated IR. It is crazy, because medical professionals are woefully ignorant of how common it is, how to test of it, and what the signs might be.

My PCP never suspected it that I know of, yet when my Endo ran the tests, and my PCP reviewed them, she panicked and acted as if my Endo wasn't taking it seriously ENOUGH...

Oh, and FYI, snoring is not always present with apnea. It is just the symptom we're most familiar with. It is more about oxygen absorption and interference and small muscle issues that cause us to temporarily stop breathing. At the time of my test back in like 2008, I stopped breathing over 255 times in 2 hours and my oxygen saturation got down to 69%. For anyone who doesn't know, an asthmatic patient below a 90% blood oxygen saturation is considered at risk for brain damage...

Well, I'm glad for the positive changes your mental health team wants to make, and I hope they work well for you, but i'm actually quite concerned "they aren't bothering" to see you!!! WTH is this world coming to??

And Lise, I've had SO many partial diagnoses that seemed to explain so many of my issues. And still no one big picture answer, so take that for what you will. I can SEE the IR on bloodwork on paper now, though, so that's a HUGE relief. It isn't in my head, etc.

I would do what you are doing. Research what you can. Change what you can. Find some peace where you can. Adjust what is being adjusted. And just wait for the appointments. Sending you hugs and feel goods!

Lise, I'm so glad to hear that your mood has lifted some on it's own. Hopefully the effexor is the helping hand you need. I've been on it for 13 years now. Dose ranging from 200-375.

I will give you a tip in case they don't. If you are not on ER (extended release) for of effexor it works much better if you split the dosage up during the day. Right now I take 100 at 800am; 100 at 1000am and 75 at 1215pm. This keeps the dosage running through me all day. The doctor highly suggested this to me and although I'm MANIC once again... it's much better for me then the depression. I've never noticed it affecting my heart rate though.... this may help that also.

Much love and hugs,
Cari

I found that remembering to take one medication on days I wasn't working was getting dangerous in my forgetfulness, so I had to set a reminder on my cell phone with a completely different ringer. I'm happy to say that in the six weeks or so since I did this, I haven't had a time when I've forgotten it!

(Hugs) I hope these new techniques work for you Lise!!

maoribadger wrote: »

Im doing ok at taking it at the moment, Im taking the effexor in the morning and the remeron in the evening and managing to remember which is also when i take my iron so I get that twice a day now too.

The chronic fatigue clinic rang to offer me group sessions today which I turned down a)mostly because it collided with the school run but also b)because urgh strangers. So Im on a waiting list for one to one. But Im having CBT with my psychologist anyway at the moment and its going ok so Im feeling at the moment a bit more able to do things, Ive been fr a walk today and been shopping and done some housework. Now having a sit down because Im tired though but maybe i need to accept that and just sit down rather than trying to fight it and end up zonked out later. IDK

Why do they always push for the group sessions??! Oh yeah, money!

I'm the same, I went to CBT etc groups and got nowhere. The one day I was offered one to one therapy and it was such a breakthrough. Years of going nowhere and suddenly things made sense. Not everyone works well in groups. Stick to your guns and get the one to one x

At least being on a waiting list is better than them saying no x