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

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JonD
New Member


Date Joined Mar 2005
Total Posts : 2
   Posted 3/26/2005 7:01 PM (GMT -7)   
 Hi, my name is Jon and I'm 22. Recently been diagnosed with CFS (almost by telling my useless NHS doctors that's what's wrong with me- after being diagnosed with Sinusitus!? and a lot of fobbing off).
 
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)


Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 3/28/2005 10:30 PM (GMT -7)   
Hi Jon,
Welcome to HealingWell and the CFS Forum!
 
Well, the symptoms you list are a well within the norm for CFS, but I'm not convinced by the list alone that's an accurate diagnosis.  Have you ever seen the US diagnostic criteria for CFS?  I'll post a link to them below, before I close.
 
I'm not sure if you're in the UK or Canada, but if UK, CFS is usually called ME (I always forget how to spell it, but something close to: Myalgic Encephalopathy).  So if you haven't already, you might want to do some searching under that name.  Since I can't spell it well enough for you to search with, I'll post links to a couple of websites I know about.  Then you can take it from there (they're below too)
  :-)
 
To answer some of your specific questions, I've heard many people with serious illness describe a sense of "the lack of well-being".  There's nothing they can really put their finger on, nothing in particular, but just the overwhelming sense that you're describing as "weird sensation that things just don't seem right".  I haven't heard many people with CFS mention this, but a few.
 
The problem of your shoulder feeling pushed and pulled, is a new one.  But if you did have some type of job or other situation where a lot of physical stress was placed on the shoulder, chest or upper back, especially repetitive stress or motion, the symptoms could make sense.
 
Oh yes, it's very common to "completely space out when concentrating sometimes".  When it happens to me, the harder I try to concentrate, the more spacey I get!  Other times I can concentrate effectively without any problem.  But anyway, yes this is very common!
 
In closing, I'm not sure your symptoms are entirely consistent with CFS.  I'm not a Dr or professional of any kind, and maybe you just didn't list all your symptoms.  Maybe you don't realize other symtoms are related.  Anyway, the websites below will help you to further solidify, or maybe even reverse th diagnosis.  And I'm sure they'll help to answer your questions.  (links are active)
 
 
 
 
For some more generalized info:  HealingWell CFS Resource Center
 
Hope this info helps some.  Please feel free to ask, if you have questions we can answer (although if its a Q from one of the websites, ask them ;-))  Good luck, and take care.
 
 


Brynn
 
*Co-Moderator for Chronic Pain forums
*Moderator for Chronic Fatigue forums
*Temporary Co-Moderator for Fibromyalgia forums

Post Edited (brynn) : 3/28/2005 10:33:58 PM (GMT-7)


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 3/29/2005 7:15 PM (GMT -7)   
eyes  Crikey, where do I start...! tongue
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 ! yeah
  • 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... eyes Do you wear glasses ? Have you had an eyesight test ? scool Are you on any drugs ? !  cool
  • 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... nono That's my disclaimer, you have been warned !  tongue    yeah   


JonD
New Member


Date Joined Mar 2005
Total Posts : 2
   Posted 3/30/2005 5:21 AM (GMT -7)   

 Thank you all for your adivce.

 

To answer Brynn- I do fit into the 'canon' of symptoms, for want of a better word, I just located my most severe symptoms as discussion points.

Snohare- thank you for your time, a lot of the things you described are very similar to mine, particularly the 'telescope' effect- that's what I was trying to describe when I talked about my vision problems.

I'm not on drugs, but I have had an eye test wihch came back as slightly short sighted.

I've seen a chiropractor about my back and neck, but felt the relief it provided was only short term. I think I'll try an osteopath, perhaps it will help.

My fatigue feels more severe than the tiredness I suffered from during Glandular Fever/Mono, perhaps ME/CFS is an innacurate diagnosis, as I haven't had a cold all winter, but I do take tremendous care of myself, with diet, hydration, gradual and limited (very- a brief walk to the shop)and staying off pain killers etc.

Mark- no, I haven't added a low-carb/ no-carb food to my diet- what effect would that have?

 

Thanks all for your time again, I'm currently enjoying a week's holiday from work, and planning on seeing a specialist on ME/CFS and Candida, hopefully he can steer me in the right direction!

 

 

 

 

 


Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 3/31/2005 6:59 AM (GMT -7)   
Hi Mark,
Welcome to HealingWell and the CFS Forum!
If you know of any non-commercial website, or webpages which describe this profile, or syndrome, if that's an appropriate description, you're welcome to post them here in a message. I just stress that the webpage must not be 1 - selling something, or 2 - claiming it is a cure for CFS. But we do welcome pure information!

If you know of a website or webpage, but it doesn't fit the above criteria, would you mind emailing me a link or address? I would like to personally check it out, even if it's not allowed on HW. (My address is in my profile, or envelope button to the left of this message.) Thanks!
Brynn
 
*Co-Moderator for Chronic Pain forums
*Moderator for Chronic Fatigue forums
*Temporary Co-Moderator for Fibromyalgia forums


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 3/31/2005 5:27 PM (GMT -7)   

eyes  Brynn the human data hoover....! Plug your ears boys, or she'll suck your brains right out through them.... yeah tongue

Jon, the vertebral discs I was referring to are held in place by sets of muscles on either side of the spine. It is usually when these muscles are load bearing asymmetrically with the spine curved that the discs "slip". If the discs stay out of place for long enough, the muscles then accomodate to this new position, and will tend to pull asymmetrically on the disc even when it has been manipulated back into place by the osteopath/chiropracter. So if you have several discs out, or discs that have been out of place for a long time, then it's not unusual to find that the relief is only temporary. However, each time the disc goes back into place, it is likely to stay there for longer, and less care needs to be taken to avoid it popping out. First time off though, all you need to do is bend down to pick up one bag of groceries....twist getting into the car seat...pull a heavy door open...you get the idea. My osteopath used to say that he had patients come back to him ten minutes later, because of the seats in certain makes of car. (He was a nice guy, didn't charge them for an encore.)

BTW, if you have stabbing twinges of pain in the rib cage, front or back, particularly related to posture and breathing, this may be a sign of slipped thoracic vertebral discs. Relatively rare, but intensely uncomfortable when they happen, and can cause weird and wonderful symptoms. (They may be able to indirectly affect the vagus nerve.)

The main difference between chiropracters and osteopaths (in the UK anyway) is that the former use equipment to exert leverage, and to be more aggressive in the manipulation they do; the latter usually use gentle probing of the spine and joints for diagnosis, with relatively minor leverage used by hands or fingers in the therapy itself. (Pretty much painless, in my experience.) 

Sounds like your fatigue is similar to mine - doesn't have the immune deficiency component that M.E. sufferers have. (I tend to believe more in the US CFIDS paradigm for fatigue disorders myself, as the UK M.E./ Post Viral Fatigue Syndrome model seems a bit simplistic.)

I also control mine mainly by diet and exercise... eyes although "control" is an overly optimistic word, the way my Crohn's Disease is behaving at the moment. sad

Hey Mark, Sucralose...is that an artificial sweetener ? Or is it just an "abnormal" starch/sugar, like corn syrup and the like ? I'd guess it's artificial by your question about the lo-carb items, as they tend to replace sugars with synthetic sweeteners....?     


Ralph
Regular Member


Date Joined Aug 2004
Total Posts : 139
   Posted 3/31/2005 5:54 PM (GMT -7)   
Snohare.

I've finally figured it out. You are actually a Medical Doctor (MD or Me Doctor) pretending to be a normal human like the rest of us.

"You can't fool me my boy. The jig is up." Tell the truth laddie. NObody can know so much about medical mumbo-jumbo without having been schooled for years.

I got ya now. devil yeah

snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 4/1/2005 5:32 PM (GMT -7)   

  eyes Crivvens, what genius came up with the idea of chlorinating sugar ? ! Talk about a marriage made in Hell !! Chlorinated anything is bad enough for anything biological, but sugar... eyes Given sugar's potency and ubiquity in cellular systems, that idea's got to be a triumph of the pocket over personality.

I'm happy to say that Splenda seems to be very rare here in Scotland Mark, I'd guess the market here is dominated by saccharin and phenylalanine. (Which I know too much about to ever touch, even if I could stand the taste.) But of course there's no telling what catering packs and imported foodstuffs may have it buried within. For once, I'm glad I have such a restricted diet.

Ralph, it's just that I have had way too much "leisure" time to spend reading.   Absolutely yearssad And I was of course highly motivated to find out about medicine myself, by the utter incompetence of the "help" that was on offer to me.

nono  If you ever met me, you'd know that I'm not pretending to be a normal person...my friends would laugh at the very thought, as I do !  yeah I have mentioned my collection of cuddly toys to you, haven't I ?

I will confess...if my memory had worked properly, if I hadn't had dyslexia...I'd have loved to be a virologist. smurf


Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 4/8/2005 4:49 AM (GMT -7)   
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"??? confused    I'm not even British! nono     If I'm anything, I'm the "human data vacuum cleaner"!! yeah   LOL!! tongue tongue    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??!! yeah   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 :-)

Brynn
 
* Co-Moderator for Chronic Pain forums
* Moderator for Chronic Fatigue forums


Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 4/10/2005 5:26 AM (GMT -7)   
Oh, that IS odd! Why market an artificial sweetener if it has the same calories as sugar???

But regarding risking good health, I think that there will be lots of people who are unaffected by this syndrome that you describe. It may well be that people who are somehow otherwise not completely healthy, who are affected. Or it could be some other factor which determines who is susceptible to the symptoms you describe, and who isn't. But I am sure that the makers of Splenda will not be the ones who instigate the studies which might identify these factors! Unless it turns out to be a major health threat, to very large numbers of people, no one will investigate. Well, I guess short of private donations. Anyway, thanks for letting us know about this, Mark.
Brynn
 
* Co-Moderator for Chronic Pain forums
* Moderator for Chronic Fatigue forums

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