Discussing :: Chronic Fatigue Syndrome

#1

T.J.
Chronic Fatigue Syndrome

I have just been diagnosed with CFS and was wondering if anybody else out there has had any experience with this? It's all new to me but it explains soooo much! Does anyone on Chesley have experience of CFS (either themselves or friends) and if so do you have any advice? I kind of feel I am fumbling through dealing with this blindly!


New Member

i dooo!!!! my mum has had it for 20 years, in fact i came on here for the same reason, but id like to know if anyone knows how to help. also if there are possibilities it could be passed on genetically or also if anyone knows some actual treatment as to which could help her and also yourself t.j. my mum has been though a hell of a lot of treatments and yes they may relieve her temporarily but nothing seems to stick! :(
it distresses me to see her in such a state for so long and i want nothing more than to see her well.

#2

StillMe

My sister has it. Possibly both of my sisters, actually. They sleep a lot. And have no energy when they get up. They also have fibromyalgia so it's hard to know which symptoms are from which.

I have another friend with both and she has cut out preservatives from her diet, almost completely (not easy, I realise) but says she feels so much better.

I'll ask them if they have any advice next time I speak to any of them.

Good luck. Take it easy. Have a rest. :)

#3

StillMe

Well, I spoke to my sister and apparently it's hard to give advice as it's so different for everyone, and can be tied to other related illnesses (like fibromyalgia).

She said it's very complicated. That a lot of Doctors don't actually believe it exists. What she did was give up everything. For her it was linked to depression. And stress.

I'd google a lot, and only listen to the parts that sound right for you.

And there's an online forum where you can talk to people with similar diseases as yourself but I can't for the life of me remember what it is. I'll pop back if I remember.

#4

T.J.

That's the problem I'm finding. Because it can be soooo different between people it is hard to know where to begin. So basically am trying everything. Am sick of falling asleep at the most inopportune times, and feeling like I have walked a marathon just trying to get from one room to another! There's plenty of time for that when I'm old! Am even trying homeopathy which I have never really been into but doctors med just aren't doing it. Do you know anything much about that? Some people swear by it, but I'm not sure....willing to try though!

#5

StillMe

Oh, some things that helped my sis, sleeping a lot, like 10 hours or more, losing weight, relax whenever you can, say 'No' to a lot of things, and time. Unfortunately no one can say how much time.

To my knowledge she didn't try any homeopathic remedies so I'd be interested to her if you think any work. She's going to some healing type person at the moment who apparently has a holistic outlook and tries to heal the whole body, but it's WAY expensive, and you go a LOT of times.... And it's in Dunedin.

#6

animal lover

I was first diagnosed with CFS when I was 6, but had it more severe since 12. I am 25 now. I am afraid there aren't any quick fixes. It is all trial and error trying to figure out what helps you. You have to listen to your body and go from there. I am into all the natural remedies and have tried many different things. I also have to be on medication as well. I have the type of cfs that I can't sleep a wink without medication. So so tired but can't sleep. A good book is Chronic Fatigue Syndrome by Dr Rosamund Vallings. It explains a lot of things. She is a doctor I have gone to and is one of the leading CFS/ME specialists in NZ. She is worth seeing if you are Auckland way. She really helped me out when I was first diagnosed. I am more then happy to keep in touch with you, if you would ever like to talk to someone. Email is always best though as, talking on the phone is tiring. Don't worry you will learn to cope and there are people out there that understand. You just have to find them.


T.J.

Thank you so much. My email is natala_pilet@hotmail.com. Would love to hear your experience with this. It's just so frustrating at times!!!

#7

Eloursnz

Yes! I have CFS/ME. It's been about 4-5 years for me so far and I'm still struggling through it (because I'm a tad stubborn and like to push myself, I can't help it! hehehe) trial and error and trying my best to remove stress and worries. For me stress, worrying and sleeping is what can give me a better or bad day. A lot of pressures do come from myself so I'm trying to work on that but its hard when I feel as if I have to do something when in reality no one expects as much from myself as I do (darn perfectionist) hahaha. Oh well! I think everyone with CFS has probably almost become a professional alternative/natural medicine expert at one time or another, hahahaha, there are so many things to try and you just have to find what works for you. My advice is to remove all pressures and worries as soon as you can and just try to get to a point where you can feel good, it will take time but it is possible! Keep your spirits up, focus on yourself and keep good people in your life :)


T.J.

I am the same! If I'm gonna do something it has to be done to my standards, but then there is always a cost! Luckily my partner is really supportive and actually stops me if I am going too far..he sees it better than I do!

#8

J.Sark

I'm considering going to the doctor, I could stay in bed the whole day, sleeping at least 10-12 hours and nothing motivates me, also tired all the time! Probably CFS with a hint of depression? Who knows...


T.J.

Sounds like me! I also found things like increase in headaches, fuzzy vision, inability to focus, forgetfulness, and always feeling like I had the flu. Things I mostly had put down to age! Definitely worth finding a good doctor and getting checked out.

#9

cardigangirl

I have yet to be diagnosed with chronic fatigue syndrome but Ive read all about it and it sure sounds like me. I always feel tired and run down and as soon as I wake up I feel the need to go back to bed. Im on depression medication, be nice to feel different.


T.J.

I used to loathe medication, believing in looking for the root cause instead. Now I say bring on the pills!

#10

Eloursnz

The problem for me is not allowing myself to rest and stop, I usually only give in when I completely crash which I know is so bad for me :( Anyone have any advice on how to just be? Definitely go to the doctor, as soon as you can get diagnosed the sooner you can work on getting better, second opinions are definitely needed if you find a doctor doesn't believe or understand, you know yourself best.

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