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Fibromyalgia and Chronic Fatigue Fibromyalgia syndrome is a widespread musculoskeletal pain and fatigue disorder which generally occurs in the muscles, ligaments, and tendons the soft fibrous tissues in the body. This forum is for fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome (CFS/CFIDS).

Could I have CFS?

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Unread 02-07-2012, 06:49 PM   #1
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Help Could I have CFS?


I posted this in "General Health" too, but thought I might try here as well since CFS has come up a few times and you guys might know more. I know this is long. I'm desperate. Thank you for reading.

I got sick last january (2011). I started getting extremely tired, falling asleep in class, sleeping all day, having troubles being awake more than a few hours. I also felt really light headed and dizzy a lot. I'd be nauseated and have diarrhoea. Around March I could be up for about 2 hours before I had to go lie down again. When I overtaxed myself, by doing really "simple" things, like having a doctor's appointment or going to a class, I'd experience "attacks" or episodes (I haven't been able to figure out what to call them) of extreme fatigue, it'd feel like someone very suddenly injected me with a large dose of tiredness, coupled with light headedness and shaking. My eyes would water and my vision blur (whether from being so extremely tired or a separate symptom, I don't know). My body would feel heavy, it'd feel like I really really didn't want to move. However, I could move, if I focused, I wasn't paralyzed, I'd also get an.. uncomfortable feeling in my body, like I was being squeezed and compressed? This is really difficult to explain.

In February, I saw a GP for the first time. They started running tests, which all came back normal. I saw three different GPs before I was referred to an endocrinologist because my cortisol levels were quite low. The endo put me on Hydrocortisone and also put me on sick leave (this was in May and I had barely been able to finish my courses, thanks to very understanding teachers and a mother who at times had to read out loud to me from the course literature). Initially, after the hydrocortisone and the sick leave, I got a little better. I was off sick through the summer and the plan was that I would continue my studies in August, now on practical training. I was skeptical, but hopeful.

I started placement at the end of August, but after about a week or so, I started doing really badly again. I pushed on, hoping that it would get better, but after about two weeks of not being able to be there much and the return of all my symptoms, I contacted the endo and he once again put me on sick leave. He consulted another specialist who deals solely with cortisone problems and it was decided that since I was still so ill and had had no improvement of the cortisone, I would slowly come off it. (I did and have noticed no difference).
More tests were done, among them a Vitamine D test, which showed that my levels were very low and I was put on supplements.

Slowly, I got a little better during the fall when I was on sick leave. I'd be able to be up for more hours, not have as many "attacks" etc.

The endo also referred me to do a gastroscopy to see if I had celiac disorder as well as to see how my body deals with nutrients (I think). I've gotten the results and it was all normal.
They also noted that my PTH levels were a bit high and explained that this could be because of the Vitamine D deficiency and that we will monitor it for now.

Last spring I also saw a neurologist and did a MRI scan of my brain. I have also seen a sleep specialist and done a sleep study and a MLST. They've surmised that I don't have narcolepsy (which makes sense since I don't actually fall asleep suddenly) and that the MRI scan was clear. I have Delayed Sleep Phase Disorder.

Now I have once again started university, hoping that I would be able to do it this time. It's the second week now and I'm already feeling the return of the symptoms. Extreme fatigue, I kept nodding of in class yesterday, I've had "attacks", I'm nauseated, dizzy etc.

I have a phone appointment with my GP on friday. I don't know yet if I am going to ask to be put on sick leave again. I really don't want to, I love studying. But I feel like crap.

The symptoms get worse when I'm active. They get worse if I go to class or coffee with friends or an appointment. They get worse when I try to focus and concentrate. If I'm already tired, it can be completely impossible to focus on a text, especially if it's something more difficult than reading my Facebook page. I have trouble focusing and concentrating. My memory is worse. When I get tired, I slur worse and I apparently look white.

I don't know what's relevant, so I'm writing everything. I have hypothyroidism, but my levels are stable and I've asked the two endocrinologists I've seen if that could be a participating cause and they've both said no.
I have Bipolar Disorder, but again have been stable for a few years and both the psychiatrists I've seen have said that it is not the reason for my symptoms, nor is my medication (I have had many conversations about this).

All the doctors have said that the few things they have found - the Vitamine D deficiency, the elevated PTH levels, the sleep disturbances, can be pieces of the puzzle but that they don't explain the whole picture. That I shouldn't be this sick.

Please, if anyone has any ideas - no matted how far fetched - let me know. I'm desperate. I have had a lot of blood tests, so if you think of something, I'll let you know if I've had it or not. If you think of a diagnosis or cause, let me know and I will bring it up with the doctor. The one thing that keeps coming back is Chronic Fatigue Syndrome and possibly Lyme Disease. Anyone know anything about it?

I know this is long, but thank you.

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Dmom3005 (02-08-2012)
Unread 02-08-2012, 07:45 PM   #2
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I can think of one thing that might have caused at least part of the things.

I don't know exactly about the tiredness, and the nausea.

But I would think its possible.

Did you by chance either have a accident and hit your head? Even when
it didn't seem severe. If you don't remember its still possible.

I would suggest you see a neuro-opthamologist. There is a condition,
that happens with your brain, but more in your inner ear.

I believe its initials is BPPV, which you can look up on the internet.

I had this last year after a car accident.

But before this, I was already seeing this doctor for migraines, and before
had been treated for dizziness, clumsiness, and other symtoms. And he
had sent me to a physical therapist. To get over the issues.

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Unread 02-09-2012, 08:17 AM   #3
Peter B
Join Date: Jan 2008
Location: Perth, Western Australia
Posts: 376
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Default Cfs?

No, you couldn't, as it's not a diagnosable illness-it's just what a doctor might suggest when he doesn't want to do any further investigation.
Don't ever accept it.
My daughter was told she had CFS and this led to her being given entirely incorrect advice, which had the effect of worsening and prolonging her illness.
So it is very important that you continue down the path you have followed so far-I'm very impressed-until you get the right answers.
It won't be easy, and you will have to take complete control over it as you are probably venturing into an area of very shaky medical knowledge.

My daughter in fact has ME. This is Myalgic Encephalomyelitis.
I have no idea if this is what you have, but fatigue is not usually a factor.
She was so disappointed with the complete lack of medical care, knowledge and assistance available to her that she embarked on an intensive study of the illness.
The result is her world renowned website, and she has also written several books.

Here's a link.

Fatigue was not one of her symptoms, so it was strange to be told she had an illness with fatigue as its main symptoms.
Her main problem is that her heart doesn't compensate by pumping faster when she sits or stands.
You would do well to read a bit of her website to see the battle she has had, and you may pick up some good advice on tests and things.

She has now begun improving since getting seriously ill over 13 years ago, and while it is impossible to say which of the multitude of things that she has tried and/ or taken has been responsible for this marked improvement, she has settled on a diet free of chemicals, processed foods, sugar, dairy, nightshades, alcohol, grains, soy and so on.
She has fresh vegetable juice daily, organic eggs now and then, organic meat and veg. Coconut milk is her main fat, and she makes fruit smoothies with this for all of us. Great for breakfast.
Keep up the intense study of your illness, and disregard any thoughts of the fake CFS.
See my mosaics

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Unread 10-24-2012, 10:24 PM   #4
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Default It totally sounds like CFS

It totally sounds like CFS. I went through something similar after contracting cytomegalovirus. It turns out that CFS often develops following a viral infection. It's a tough experience, and my heart goes out to you... I, too, had to quit work and had to take a medical leave from my doctoral program. I'm so sorry you're going through this. >hugs<
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