No longer alone !

Discussion in 'Fibromyalgia Main Forum' started by MEBryan, Dec 28, 2002.

  1. MEBryan

    MEBryan New Member

    It's really good to have found you all! I have had ME/CFS for life as well as Wolff-Parkinson-White Syndrome. I won't describe all the CFS symptoms as every one here knows them only too well. It would be interesting to learn of any one else with WPW like myself. The reason is that I have always said - in my case - the two conditions are linked in some way not medically recognised. Medics say no.

    Yet only in the last few weeks have I had enough proof to convince me of this. I have spoken with another WPW person of my age who says the same as myself.

    I had gone almost a whole month without any WPW effects. I was also feeling what might be called "normal". You know, those odd times when you feel so good, you could run, jump and chop down a tree with your bare hands; but you don't because you know you will be struck by CFS. Then quite suddenly I had 3 days of my heart jumping about like a tin bucket full of mad frogs - inspite of regular medication to control it.

    Immediately all the CFS problems returned. Because it is normal for me to have up to 9 WPW episodes a day with medication (and up to 30 without) there is little chance of the CFS subsiding until the WPW also calls a halt to its antics, which for a rare space of time it had done.

    I do not take any medication or treatment for the CFS, apart from pacing and resting. I just ride it like a surfer, up and down the crests, sometimes tumbling off.
    So, if the are any WPW's with CFS, please give me a shout!
    BTW: I have been diagnosed as CFS, after years of mis-diagnosis, MRI's, walking the plank and what have you.
    So there we are, that's me (ME, even!).

    [This Message was Edited on 12/29/2002]
  2. Annette2

    Annette2 New Member

    It's nice to meet you. I have FMS with probably a little bit of CFS thrown in. I was diagnosed 5 years ago. I'm usually always in pain, somewhere in my body. What is WPW? I've never heard of it - what are the symptoms? A lot of us with FMS have "Restless Leg Syndrome". I think it happens mostly at night, as you're laying in bed trying to go to sleep. Your legs get all twitchy and it feels like a current is running through you. Is that like WPW? Anyway, welcome and you'll meet a lot of wonderful people here!

    Annette2 :)
  3. MEBryan

    MEBryan New Member

    Hello Annette2,

    WPW in itself is nothing to do with CFS or FM. It is an extra electrical pathway (or more) on or in the heart, which conducts electrical current incorrectly. This makes the heart beat go crazy and much too fast. At the time it happens can create problems for the person; at the worst becoming temporarily disabling.

    Whilst my cardiologist says it can't cause CFS, my personal experience is that exacerbations of CFS do run with my WPW events.

    I have no other apparant cause for CFS, and have suffered its worst extremes. In fact, in the 1980's, MS was suspected but MRI showed no sclerosis in the brain; although they didn't scan the spine. So results were inconclusive.

    I know medicine is not an exact science, (which in a way makes my conclusions more likely,) so I do think that us who suffer CFS could possibly know somethings the specialists, who do not personally suffer CFS or FM, might not catch on to.

    What ever the cause of CFS in my own case, I am at one with my fellow sufferers and am delighted to "meet" you Annette, and every body else here.

    One other thing: from the way it's behaving lately, I suspect my car also has CFS!

  4. MEBryan

    MEBryan New Member

    Thank you for your reply. Perhaps it is good that Dad is not going for ablation. I knew a man my age who had it done and it has ruined his life, in his words.

    I have read the WPW forums (found via Google) and decided against it; although it has been offered to me. I would rather put up with the effects of WPW & CFS and maybe medication side effects too. I just hope your Dad is comfortable. Please convey my best wishes to him.

    I am sorry that you have CFIDs, but personally doubt there is a connection with Dad's WPW. These things are a misery, aren't they just!

    When driving a 32 year old man to hospital for kidney dialysis (spelling?) a while back, he said to me that he sees so many people worse than him. He died shortly after that. Worse than him? ...

    I am most fortunate to only have what I have and to have lived more than twice that young man's life. I can put up with this; even though at this very moment I am zonked out after walking the dog this morning. I'll be taking it easy the rest of the day. You'll know what it's like.

    I wonder if it is helpful to tell every one that I have suffered CFS at its worst years ago, lasting for several years, and thought it would never go away. But here I am age nearly 66. Weak arms & legs ever present and other things. I adapted my life to fit within limitations and I love my life.

    Isn't this great, little ol' me being able to talk to you across the world in big ol' Texas - And feeling that to me, you do count!
  5. Kim

    Kim New Member

    I don't have WPW but I have been diagnosed with SVT originating from a place that they are unable to ablate. I went in for the EP study in 1998 and they couldn't do the ablation. I was devastated after waking up and hearing my doctor say he couldn't do it but I think it was a blessing in disguise because I've heard that with my type of SVT it could get worse. I prayed and prayed for my heart to stop racing and for the last year and a half it has been great. I still get PVCs and some things that are weird and scary, especially if I'm tired or have eaten too fast or something spicy or fatty. Unfortunately, late in 1998 my heart decided to go off to a beat of its own in connection with acid reflux (which causes major palpitations in some of us). Well, it got so bad that I couldn't work and I went into major depression. The stress and lack of the right kinds of food and supplements threw my brain chemistry off. This all started the FM and Chronic fatigue.

    I certainly understand what a pain a heart that beats to a different drum can be. So, although I don't have WPW, I have CFS and a weird heart.

    All kinds of things can kick it off like bending over, turning suddenly, drinking anything cold......on and on.

    God bless.

  6. MEBryan

    MEBryan New Member

    Seems like the same tune, Kim. WPW causes SVT, so as you have SVT (Supraventricular Tachycardia), whatever the cause, we have the same problem. So, you seem to be another confirmation there is a link to CFS (& FM in your case).

    I tried telling my doc that viral attacks may not be the only CFS cause. I just remembered: recently a retired surgeon friend told me there can be CFS without a known cause - perhaps genetic. Well, I was born with WPW, a genetic defect.

    So if anyone can't recall a reason for their CFS, perhaps they are in a similar category as myself.

    I hope you find the cause for your SVT - it's horrid not having an explanation. Incidently, my medication is Flecainide 100mg 2x day. This is fine for me as my heart is otherwise in good health - it cannot be safely prescibed for certain other situations.

    Thanks for your information, Kim.
  7. marcus1243

    marcus1243 New Member

    And in case you missed my earlier message to you (in your posting about weak legs), I was asking about your other symptoms, but you've covered it pretty well here.

    I guess the reason I'm so interested is that I'm a Fibro sufferer without doubt but I also suspect that I've 'contracted' CFIDS also. Whereas before the only problem wa aching and pain, I now have severe muscle weakness and pain/tenderness practically everywhere, with arms and legs weak after only minor exertion (even standing). Obviously, I'm concerned about the possibility of MS, but neuro tests are normal. Was it your experience that CFIDS can present as a continuum of symptoms, and be gradually progressive to a state of extreme fatigue and weakness? It seems to be what is happening to me..?

    Hoping you might have some thoughts on this one!
  8. MEBryan

    MEBryan New Member

    When young there were always weird things happening, but our doctor of the time put it down to "growing pains", "rhuematism" or otherwise scratched his head. So it was, until 1980 when I had a serious attack of the WPW complaint. Shortly after that the CFS intensified.

    Yes, it did seem to be progressive from that point on, Marcus. I was working as an insurance agent, calling on clients to collect premiums; sort out claims; selling, and so on. Driving and walking my territory 3 or 4 days a week. Also going to the office and doing the admin side of the business. Physically and mentally draining. I was working around 50 - 60 hours a week.

    I think the CFS was progressive because I was always determined what was happening would not stop me. I felt I just had to keep those legs on the move. I insisted on working at the same level however I felt. So a fatigued brain and body was being pushed all the time, therefore compounding the problem.

    Eventually I went to the doc almost in tears. I knew I could not carry on. Result - early retirement.

    So, Marcus, are you pushing yourself too hard?

    However, these insidious DD's also seem to progress without provocation, don't they? They can also go into remission to some degree. Unpredictability is a feature so often.

    So easy to think it is MS. So difficult to get a proper diagnosis. I went through that stage. One doctor, the neurologist's clinical assistant, said I was classic MS. But time proved her wrong.

    My attitude came to be: What the heck... whatever label they give me doesn't alter how I am or feel. I am myself and this is how I am.

    Just do not give up on yourself; be kind to your body. Time most likely will bring a substantial remission, whatever you think right now.

    God Bless.

  9. marcus1243

    marcus1243 New Member

    For that lucid and informative reply :)
    Yes, I *have* been pushing extremely hard (whenever legs feel weak, trying to exercise the weakness out of them etc -- works short term -- but you pay for it later), and I've never stopped working/pushing myself. But I feel the time has come to realize that I'm in severe danger of disability if it continues this way. This is not a fight I know how to win, and that scares me. I do have some neurological symptoms (as I see you did) -- tingling, migratory burning sensations, intermittent blurry vision and an occasional overactive/irritable bladder -- but my main symptoms are widespread muscle aches and pains and joint pains everywhere, which makes me think that it might be CFIDS/FMS rather than a primary neurological illness. I guess time will tell. But hearing from others with similar experiences who have had remissions like yours is always hugely encouraging!
    Thanks again for the reply.
    Best wishes,
    [This Message was Edited on 12/30/2002]
  10. Shirl

    Shirl New Member

    Hi Bryan, welcome to our world. I have Fibromyalgia, but not the dreaded CFS! I do have some of the cross over symptoms that come and go, but not often.

    Like yourself, I do not take meds for the Fibro, just supplements, herbs, and home remedies. I sort of gave up on the medical profession years ago.

    Glad you found our board, and I know you will get a lot of help around here, I sure did.

    I read your profile, are you near a town called; 'Swansea'in Wales? I have a friend that is originally from Swansea and now lives here in the states.

    Again, welcome to the board.

    Shalom, Shirl
  11. MEBryan

    MEBryan New Member

    Hello Shirl, thanks for the welcome to this great support media.

    No, Wales is the otherside of the UK. The west side nearer to the US. I am nearer to the French coast in the east. To you, probably no distance at all, but to me it's quite a way; probably several hundred miles.

    I read up on FM and there seems to be little difference - the main thing being more pain with FM. I guess we just don't want each others DD, do we! I suppose it's not so much having given up on prescribed medication here, more like it never been offered by the doctors. Also not knowing which would be best in one's own case. Anyhow, the WPW medication which I have to have, so as to have a near normal life is enough to put up with!

    However, I do not like to take meds unless proved really necessary anyway.

    I think that life here is just a short sentence within a library full of books. I look forward to an eternity with a perfect mind and body - but not just yet awhile, eh!

    And just because my wife thinks I'm perfect already, doesn't mean that I am... Huh!

    (She just slapped me with a wet haddock!)
  12. MEBryan

    MEBryan New Member

    Wahey ! I've been Hugged by CraftyJody. Up until now, I've been Bugged by CFS.

    Thanks CraftyJody... Yihaaaaaa............ !