Hi there, new member -after a bit of advice re CFS, ME diagnosis

Anyways- I suffer with these symptoms-

fatigue (obviously) although I must say the level of debilitation it causes varies from inability to get out of bed, to almost normal, just a little yawny. Normally pretty exhausted though.

vision/spacial awareness/dizziness/confusion- my least favourite symptom- normally worse at work. Migraine type feelings, headaches, tingling in head, heavy head, weird sensation that things just don't seem right (anyone else suffer from this?).

Pain in neck, base of skull, shoulders... panic attacks (learning to control these- rescue remedy has been a great help), muscle lock, feeling like I'm going to fall down any minute, but never actually do.

All of the above I've read about numerous times, but I have another symptom that really bothers me. Mainly if I'm walking, sometimes when simply sitting of lying down, I have a bizarre spasm type feeling in my upper back,normally around my left scapula. It feels like I'm being pushed and pulled all over the place. When I walk, it feels like I'm being tugged back on reins (sp?) like a toddler, then let go. I'm 80% sure it is a spasm in a large muscle, probably due to over a year of over exertion, but I would like to know if anyone else has experienced anything like it. My GP said he'd never heard anything like it, but I expect that from him.

Does anyone else completely space out when concentrating sometimes? Like words on a page start moving backwards whilst everything else moves forwards?

phew. If anyone could be so kind, firstly, do people think that I do indeed have CFS? Also any sufferers that experience some of my unique symptoms, I would really like tp hear from you.

Thank you very much for your time,

Jon

Post Edited By Moderator (brynn) : 5/11/2005 2:08:12 AM (GMT-6)

Mmm, I think I'll treat you as if you were me, Jon, having a bad day...save wear and tear on the concentration muscles by breaking the prose into smaller bits.

• Congratulations on working out what the NHS will do for/to you. Took me years to realise that the people are great, but the training and the systems are generally lousy. To be fair, most GPs are paint-by-numbers technicians who are at the bottom feeders in terms of information. But if you can get one who knows how to think for him/herself, it is like someone removing the world from your shoulders.
• Fatigue ? Comes in different flavours, is my experience. Some, like the imminent falling down feeling, (if it's what I call "drooping" where I suddenly lose all muscular strength in my upper back and often want to lean, but never fall),  related to food intolerances, is very episodic and acute, similar if not identical to low blood sugar. Some is crushing sleepiness. This also improved with me, when I went onto a gluten-free diet, although when ill enough it re-occurs. Some is what I consider neurotransmitter-related; typically when also suffering from depression, but very much a physical symptom in its own right. This can include a total inability to move a muscle at times, sometimes while still being aware of surroundings, and often in a state of anxiety (usually while waking up). This is what I believe is known as sleep paralysis, can cause horrendous nightmares, and is related to abnormal serotonin levels. And of course there is also common or garden variety depressive fatigue, which is slow/heavy-limbed/foggy minded, it's-too-much-effort tiredness.
• Heavy head, weird sensations....couldn't describe some of them if I lived to be a hundred...the vocabulary hasn't been invented yet ! The main one I'm thinking of is what you might call a "Zoom effect", where it is suddenly as if what you are looking at is suddenly at the far end of a telescope; or the exact opposite, as if everything you can see is suddenly crowding in on you. This can be related to fatigue, prolonged immobility, and/or - oddly enough - a bad back !
• Muscle lock, acute pains at base of neck...all these can also be related to a bad back. My experience of this comes from many hours of carrying heavy weights with poor posture, as a teenager. The net result was much referred pain and neurological symptoms as a result of intervertebral discs moving out of position and pressing on nerves that lie along the spine like telephone cables along a duct, branching off periodically. If you have a variable pain coming up from the back of your neck, up over one side of your skull and over down into one eye socket, then I can vouch that an osteopath is the (wo)man for you.
• The visual effects on the page....can be related to problems with the visual cortex, for example dyslexia, also to physical problems with the eyes. You eyes are constantly varying focus as you look at the world and there are also tiny movements of the eye muscles called saccades that help your body to balance and relate vision to physical perceptions; it is the mismatch between your visual cortex and your alcohol-affected saccades that cause the spinning head you get when drunk. Needless to say, that's a very severe mismatch, but it is also possible to much subtler degrees; flying in a  gradually banking plane, looking at a motionless object with a rhythmically moving background or some types of pattern around it... Do you wear glasses ? Have you had an eyesight test ? Are you on any drugs ? ! 
• On balance, I'm inclined to think that a bad back might have a lot to do with a lot of your symptoms. Heck, mine had me falling down in faints and blacking out before I finally saw the osteopath who eventually put about a half dozen discs back into place and educated me in all the things I was doing wrong posturally. (Asymmetric loadbearing posture, basically.) But all the symptoms you detail are also possible with CFS - many of its symptoms are neurological  and/or  muscular - so it's impossible to say on the information you give. I wouldn't presume to decide anyway, CFS/ME/CFIDS is way too hard to diagnose.
• My advice would be, follow the links that Brynn has given you, and do some reading up, paying particular attention to the specifics of when and in exactly what forms the symptoms strike you. The pattern of symptoms is as important as the symptoms themselves, although to make things awkward many illnesses exhibit great variability of symptoms between one person and another.
• I think it is Myalgic Encephalopathy that M.E. stands for, if not try Myalgic Encephalomyelopathy. I am inclined not to think that you have this, as the main things you would be complaining of are opportunistic infections - a typical M.E. sufferer has a short flu like illness and then starts catching everything going, as well as fatigue that is generally dwelt upon in greater detail than yours. However Chronic Fatigue Immune Deficiency Syndrome (CFIDS) as the Yanks call it, under the umbrella of which ME and CFS would fall, may well be possible. If you do have it, it sounds relatively mild....if you can read and understand what I've written here in one sitting, that's amazingly darned good concentration for anyone with ME.

Sorry about the delay in answering, I'm rather fatigued at the moment and find that I have to summon up my energy to think in a straight line these days....jokes are easy, serious logic is tricky... That's my disclaimer, you have been warned !       

OK  Fell'as!

Now that I've staunched the tears (from laughing so hard), and picked myself up off the floor (from ROFL), so that I can actually read the screen, I'll try to make a reply!

First, snohare, where do you get off calling me the "human data hoover"???    I'm not even British!     If I'm anything, I'm the "human data vacuum cleaner"!!   LOL!!    Well, ok, yeah, I do like to read the technical stuff, but you seem to be the one with the ability to type it up and post it in the forums!!  Right Ralph??!!   LOL!!  (Although I must add, that it is especially remarkable, given the dyslexia.  You must have worked very hard on that, snohare, and I just want to validate you on that!)

AAaaahh but alas, Ralph, one can absolutely know plenty of mumbo-jumbo, without years of schooling...well, formal schooling, anyway.  It is ironic that when we first virtually "met", I thought snohare female, and he thought me male, because we are really so much alike!  I also have been mostly ignored by the medical community, in my attempt to have my pain and illness diagnosed and treated; I also have felt it necessary to educate myself about all my medical issues, so that I might challenge my Drs with valid research when they balk at my requests.  None of my friends or family think of me as normal, either!  LOL!  It took me quite by surprise that they don't find technical details the least bit interesting, especially because those details are the keys to my health or lack of.  Anyway, my best advice (and probably snohare would agree), is if one must be ill, for goodness sakes, don't be ill with CFS or related illness!

Mark, I did have a look at the website you emailed me, and I see that you have since posted a link to it.  So that's fine.  That is definitely "pure information"!!  But I can't tell you how much I appreciate your discretion in not posting it until you were asked! I've never had much luck with artificial sweeteners, and avoid them all across the board.  If pressed to choose, I would prefer saccharin(sp?), though.  I did try NutraSweet/aspartame, as there had been some negative news about saccharin, over the years.  Aspartame had a bad after-taste, to which I might have become accustomed, had I not developed head aches and a strange feeling of being disconnected (I get the same feeling when I have to take dextromethorphan for coughing), after drinking a soda sweetened with it.  And I have tried Splenda/sucralose.  Unfortunately I may never know how it affects me as I can't get past the taste, to drink more than a sip or 2 of a soda sweetened with it.  I would describe the taste as sickly sweet.  I can imagine it could be used in a combination of flavorings, where I could tolerate it, though.  I'll have to remember to check more ingredient labels.  Anyway, thanks for the info, Mark!

And Jon, finally!!  Your thread has become somewhat diverse, as far as subject, but just wanted to let you know we're still here for you.  I hope your holiday was a good one, and that you got some significant help or info from the candida specialist.  As you probably know, the candida yeast theory, as the source of symptoms in CFS/ME is controversial.  Maybe I'll start a thread on it, just to keep things interesting (even though I'm not a strong proponent).  In any case, let us know how you're doing!

Best of luck and health to everyone