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Chronic Fatigue Syndrome
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Posted 9/13/2004 4:34 AM (GMT 0)
The following message is from lainey.  I moved it here to be more visible as it was buried deep in an old discussion:

Hi everybody :) glad i've found you. I have had cfs for three years,been diagnosed for 1.Finding it hard going at the moment, my doctor not very informative so im only taking the medication he has given me. Got NO IDEA what else i can take or what i can do to make me feel better. Would love some help from anybody!!!!
Thanks.xxx

Posted 9/13/2004 6:11 AM (GMT 0)
Oh gosh, lainey. I should have read both your messages before replying. Now my reply to your other message makes no sense whatsoever! So just forget about it, and here's a better one! LOL!

If you could describe your symptoms, treatment, including medications, etc. we would be better able to make recommendations. Otherwise, we would just be stabbing in the dark, because everyone is different. Everyone's symptoms are different and they react differently to medications and other treatments.

Looking forward to hearing from you. Take care.
Posted 9/13/2004 1:35 PM (GMT 0)
Hi,thanks for the message.
My symptoms are problems with memory,with walking,I sometimes get nauseous.I get very very tired, my speech is sometimes slurred,I get pains in my legs and arms and my skin sometimes hurts(is that a "normal" symptom?) I get headaches and stomach pains. I sometimes get IBS but have had that for a few years now,I no longer eat anything with dairy in as it REALLY upsets my stomach :)
The doctor prescribed me amyiltriptalin( thats not how its spelt but its near enough!!) and basically told me to get on with it.He said as there is no cure he couldn't do anything else for me.So i've been on the medication since March '03. I saw a different doctor last week who said that there IS more that can be done so I now have to make an appointment with yet another doctor who will refer me to the hospital to have brain scans. Do you know why they scan the brain?What are they looking for? I will also begin cognitive therapy and learn about staggered exercise so i don't get tired out as easily.
Do you know of anything else I could be doing or taking?
I'm signed off work at the moment.When I go and see the doctor I'm hoping to get signed off for a bit longer because i'm not really coping with it at the moment.I've just had a tummy bug which has knocked me sideways and it is taking a while to get over it.
I'd love to be back at work.I'm a nursery nurse and I miss the children.
Thanks for mailing me back,any advice you could give me would be FAB!
Take care,
Elaine.
Posted 9/16/2004 12:16 AM (GMT 0)

Hi again lainey,
Wow, I can't think of anything else you should or could be doing right now.  You're very lucky to be getting the brain scan.  Most people with CFS have a hard time convincing their Dr to do them.  The reason we would want them to be done, is to rule out MS (Multiple Sclerosis), which looks just like CFS in the early stages.  It's probably the problems you're having with your legs and memory, that has tipped the Dr off that MS is a possibility.  The cognitive training and the physical therapy for staggering (dizziness) are both state of the art in treating CFS!  So it sounds like you are right on track yeah !

But I will keep my fingers crossed that you don't have MS.  Good luck!  Let us know how the scan turns out.  Take care.

Posted 9/16/2004 1:26 PM (GMT 0)
Hi Brynn. :)
Thanks for the message.
I went to see the doctor and am now waiting for an appointment to come through.I've decided if I haven't heard anything in two weeks i'm going to chase it up!
I've ordered some books about M.E and i've been to the library. I have learnt loads and now feel more able to cope. I'm going to arm myself with as much knowledge as possible coz i've really had it with all those doctors who look at me like it's all in my head nono We have free health care over here and i'm entitled to it!
Thanks for the support,i'll keep in touch :-)
Take care,
lainey.x smurf
Posted 10/3/2004 4:32 PM (GMT 0)
Hi Brynn, :-)

How are you?Further to what I wrote a few weeks ago, I now have an appointment to go to the hospital...in 17weeks!!! Its a long time to wait but i'm just pleased that I have been refered to someone who hopefully will be able to help.

i have now written all my symptoms down so when I go to the doctors I can tell them exactly what is wrong.I am worried that I will have to have lots of blood tests again,because I have a phobia of this.I suppose that the hospital doctors will want to start everything all over again, so if anyone has advice on the best way to deal with this phobia then I would love to hear it :-) I dont mind injections,just blood tests confused I have also just gone back to work(last thurs) so i'm now trying to pace myself and not get so worn out.If needs be, I shall cut the hours I work.

I am really into finding out about cfs from books etc and feel more positive about the illness.I would like to say to people that if you are buying books about cfs,just be careful what you buy.I just got a book that told me that cfs sufferers lose their fingerprints??!! plus a variety of other wierd stuff that could really worry you if you have only just been diagnosed. Also I have learned that if you are lucky enough to have people around to talk to about your worries,then don't be afraid to,you will feel much better.

I feel that once you understand what the symptoms can be,then its not as scarey when you have a relapse.At the moment I'm trying to accept the illness,not fight against it,something I have been doing for the last 3 years.

ANYWAY..I think thats quite enough from me,got a bit carried away!! tongue

Take care.

lainey.x

Posted 10/4/2004 4:30 PM (GMT 0)
Hi lainey,
Good for You!!
Sounds like you have got the ticket, now!

A tip on blood draws--if it's the pain of sticking the needle in, that you have trouble with, then you can ask to have the site numbed first. Well I should say, at least we can here in the US. Don't know how it works there. Anyway, you still get a little stick with the numbing medicine, but it's not as big, plus it doesn't last the whole time while they're "rummaging around" in there. Once it's numb, they can rummage all they want, and you don't feel it! It's great. Some nurses will balk, but if you're insistant, you can usually get it done here.

Is that 17 weeks? That IS a bit of a wait! But at least you got things moving, and you're heading in the right direction.

Well good luck with work, until then. And I hope when the time finally comes, that it is a productive time and that much is learned. All best.
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