I am in no way diagnosing myself, but I have compiled a list of symptoms I feel from what I have researched.

Chronic fatigue syndrome (CFS) is one of several names given to a poorly understood, variably debilitating disorder of uncertain cause/causes.

Symptoms I feel: www.wikipedia.com

Fatigue: Unexplained, persistent, or recurrent physical and mental fatigue/exhaustion that substantially reduces activity levels and is not relieved (or not completely relieved) by rest.
Post-exertional malaise: An inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability,

Sleep dysfunction: "Unrefreshing" sleep/rest, poor sleep quantity, insomnia or rhythm disturbances

Several studies suggest that while CFS patients may experience altered sleep architecture (such as reduced sleep efficiency, a reduction of deep sleep, prolonged sleep initiation, and alpha-wave intrusion during deep sleep) and mildly disordered breathing,

Neurological/cognitive manifestations: Common occurrences include confusion, forgetfulness, mental fatigue/brain fog, impairment of concentration and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, and perceptual and sensory disturbances (e.g. spatial instability and disorientation and inability to focus vision) There may also be cognitive or sensory overload (e.g. photophobia and hypersensitivity to noise and/or emotional overload, which may lead to "crash" periods and/or anxiety).

Lyme disease: (symptoms I feel myself) www.canlyme.com

Head pressure
Twitching of facial and sometimes other muscles
Facial flushing
Stiff, painful neck (sometimes)

Double, blurry vision (my eyes were recently checked 20/15, don’t need glasses)
Increased floating spots
Oversensitivity to light

Plugged ears (never goes away)
Pain in ears, oversensitivity to sounds
Ringing in both ears

Coughing (seems to be all year round, sometimes a lot, sometimes a little)
Fatigue
Pressure in the head
Numbness in body, tingling, pinpricks
Dizziness
Lightheadedness (I seem to control myself pretty well)
Irritability (sometimes)
Feeling as if I am losing my mind (again, I can control it pretty well)
Difficulty staying asleep (wake up to any noise in an instant)
Short term memory loss (was not as bad 4 years ago, now it’s increasing)
Confusion, difficulty thinking (again, getting worse)
Speech difficulty (only once in awhile, when my head feels really spacey)
Extreme fatigue (non stop, no matter how much I sleep)
Low body temperature (my hands, feet and face usually feel cold)

I will now describe how I usually feel in my own words.

All my symptoms started around 2003 and I have felt them up to this day. (It’s important to know that I was perfectly well before hand, and never experienced any of the symptoms mentioned, except for ringing in the ears (tinnitus) I am not allergic to anything (not that I know of) and was extremely healthy all my life. I still believe I am healthy, this just needs to be dealt with.

Since 2003 I have always felt a pressure/vibration/buzzing in my head. It makes it hard for me to focus, and most of the time when I am having a conversation with someone, I stare right though them until I realize I am doing it and try to focus again. I usually feel spacey, like I am zoning out.

I get severe pressure in my ears almost constant, and most of the time I need to “pop” them. It usually never helps as the pressure is too much. It always feels as if I am under water. I have severe ringing in both my ears (gets worse with louder environments)

I sometimes see blurryness, mostly when I zone out and then refocus to what I was doing. I have quite a few black spots (floaters) that I never had 4 years ago. Sometimes I get snowy vision, but usually when I am out of focus. I have an oversensitivity to light, especially in grocery stores. When I walk in I usually squint, until my eyes readjust. Most of the time I look tired, my eyes are smaller, if I rub them just a little bit, I will look really out of it.

When I sleep, I toss and turn, I need to be in a dark room, and I wake up to every noise. Sometimes I can wake up very hour, but quickly fall asleep again. This happens numerous times throughout the night. When I wake up, I feel like I never even slept, and it takes me hours to get into the day. I can be super tired, but still find it difficult to sleep unless the conditions are right. I also yawn quite a bit all day long. I usually struggle just to do simple tasks.

Overall, I feel extremely tired almost every minute of the day, the symptoms are always there, even when I have slept 8-9 hours. If I don’t get that much sleep, I usually can’t function for the day, so I need to make sure I at least sleep that much. I need to relax almost all the time, and I make my life around me as peaceful as possible. Everything I mentioned above has been around since 2003, before then, I always had extra energy and never experienced this. I am a salesman, and I usually can keep myself looking in good condition. I look normal, act normal, and get along with almost every person I come in contact with. Inside though, I do not feel well, these ongoing symptoms are very draining on my system. It’s a good thing I have a very good head on my shoulders, and I keep fighting to go on. I am learning more and more as this has persisted for so long. I can’t let this destroy my life, as it has some.

I have been to many GP’s, a neurologist, an ENT, audiologist, homeopathic doctor, done an MRI, encephlograph, and have had many blood tests done, to no avail. I am hoping that one day some doctor will be able to recognize the symptoms I have and then something can be done, or at least taken seriously enough and understood.

I have just completed this, what should I do now?

hello...

I completely feel you on this one. Its a non stop spinning world out there and quite frankly sometimes it really sucks! I'm not sure about u but i have gotten to the point where i am pretty much fed up with doctors. i've been through all the tests and still no answers. I also get real tired of doctor after doctor telling you and i quote "its all in your head" Wow when you feel like this thats sure nice to hear...NOT!!

I've suffered with constant dizzy, nausea, spinning sensations, anxiety, need i go on, for the past 9 years...Just went to the doc again and had him order some more blood work of things i've researched on my own. Hope to get this back real soon, see if this is all just a dead end just like all the times before.

I have definatly over the past few years turned to the natural approach to things. Have found this to be the only thing that even puts a dent in it all.

I take Magnesium for hadaches, which can help also with anxiety.
I recently started also...GABA or gamma aminobutyric acid...it helped with the anxiety big time the very first time i took it
I also started with all the b's as i truly believe everyone needs help with these.
These are to name a few...any other suggestions please respond

The weird thing is, I never usually feel nausea, except at certain times.

Anyhow I am printing off 4 copies of this to keep for myself. I want to take them to a doctor, but first....I'll wait for some replys here, as to what I should ask for if I am going.

Should I get a test for lyme, any other specific blood tests?
What should I ask for now, and who should I ask?

__________________
It doesn't have to be the way it is, you say it is
Just because for the past 20 years, every day it is

Hi Knight-ryder,

Do you or any of your family members have of have had migraines? The reason I ask is after learning so much about Migraine syndrome, so many of your sx I have read about. I had no idea that migraine could present itself in so many ways, after all it is a neurological condition. Can you get the book "Heal Your Headache" by Dr. David Buchholz? He is a leading "headache" specialist at Johns Hopkins in the US. I have been suffering from non-headache migraine symptoms for years now. if you can't get the book, I would be happy to get a copy and mail it to you. I think many docotrs are learning more and more about this syndrome, but still many doc's have no clue. After all your testing, you know that everything is "normal" and yet you feel far from it. I totally understand. I had the face vibrating, scalp felt bruised to the touch, constant fatigue, sleep problems, brain movement feeling even though my head isn't moving, confusion, difficulty keeping concentration, stumbling over words, bridge of my nose twitching, wooziness, upper lip tingling, neck aches, tingling all over my head, cold, cold hands feet (even right now, my fingers are frozen), flushing, eyes tearing, floaters, nausea and the list goes on and on....I had no idea this was migraine related!!
If anyone ever asked if I had migraines, I would say no, I rarely get headaches....now since my diagnosis, I am really looking back to years ago, and in fact I had had alot of neck issues, with after all the neck x-rays etc...there was no reason for this neck issue. Now I understand that it was just the way my migraine syndrome was presenting itself, and since has presented itself in many "strange" ways.
I asked around and my family does have a history of migraines....well, the family history puts me at risk for and now being diagnosed with the Migraine Syndrome.
I am no doc, but just thought its something to look into for yourself
I want to add that your over sensativity to sounds is also very indicitive of Migraine
Hope this helps.
let me know if you need this book.

Pam 3

shep

I think you are the first person who described the sensation that I always get on the bridge of my nose ! It feels like tingling/buzzing ? is that the same thing you mean by the twitching ?

It has to be one of the most annoying sensations I have had it drives me mad ! I was told by the doctor he thinks it has to do with allergies !

Knight-Ryder hey to a fellow canadian !

Just noticed where you were living after I posted my last post ! and thought I would come back to ask you if you have actually found help in Edmonton ?

I ask because I just moved from there at the end of Feb this year, and found the doctors there absoulutely useless and that is if you could actually find one ! I lived there for 7 months and in all that time I could not even get a family doctor ! was very frusterating !

I hope in your case your luck has been much better, seemed when my spins started I reached out and asked a lot of questions via telephone calling back to BC ! I am now in Manitoba and they have a balance center here and the wait times are only a couple of months at most !
Good luck with you and I hope you find some piece and answers very soon ! hang in there

Yes, my grandfather, sister, uncle, and mother. My uncle had it the worst, sometimes he couldnt even leave the house it hurt so bad. None of them have experienced what I am going through.

The more I look into this, the more I am confused, there seems to be endless ways to look at what I have, My symptoms are from a whole bunch of various illnesses. No wonder no one can help me out?

What I wrote here today I will take to my doctor, the thing is what do I say now? What do I say that I havent said before? Who do I see?

__________________
It doesn't have to be the way it is, you say it is
Just because for the past 20 years, every day it is

Hi Knight-Rider.

I know it's frustrating... Doctors will not help much unless you test a certain way on a test or you're bleeding out of your ears or something obvious.

From my experience, the Canadian system can be a bit challenging to deal with too.

Do you have a good relationship with your GP? You'll need to get referrals through your GP. If I were you- I'd possibly get more than one referral too. It also helps to bring a good friend or family member to the doctors with you... just for a little support as if to tell the doctor "I'm not making this up".

From what I learned, it's best to ask for certain things.... otherwise the doctor will not do what you want. Go as far as finding out the doctors you want to see and asking for a referral to that specific doctor. A regular GP will not know what is going on with you... it sounds like you're will need to see specific specialists.

I have studied lyme disease a lot and you do have many of the symptoms... lyme disease is a bacteria infection which usually affects your nervous system.... but your symptoms can also match what other people have commented on too. If you'd like to read up more on lyme it's best to go to the canlyme website and ask for a lyme doctor in your area. it's worth a shot since it would be one less thing to rule out.... Let me know if you need help with that.

Keep well,
Christine

Yes, I would like to see a lyme doctor in my area.
Thank you.

__________________
It doesn't have to be the way it is, you say it is
Just because for the past 20 years, every day it is

can you email me and I'll get you some names?

xtine (at) sympatico (dot) ca