The FastDay Forum

Oh @candicemarie I don't get nightmares, I'm pleased to say. That sounds awful. Poor you and your daughter, that must just add to your exhaustion. I'm so glad you got some good tips from your course. That's most encouraging, thank you. Actually, this course recommends taking 3-4 half hour rest periods a day. Do you do anything like that?

As for my dogs ("the girls") I don't know what I'd do without them. They're my best buddies

Hi, sorry I've been MIA for a while, had problems with getting the site to work on my computer. recovering from holiday fun. hope everyone is also recovering.

Nursebean, good luck with the course. hope you can glean some helpful info. Loved the pictures of your girls. as for rest periods, I take frequent ones, not long ones. don't know if that would be helpful, let me know how you do with it.

CandiceMarie, oh, the nightmares sound terrible. I don't usually remember dreams and I'm not prone to nightmares. are you on any medications that could be responsible? I know that some can cause them. I'm so sorry that you and your daughter are both suffering. love the pictures of your furry family too.

my daughter and I have been diagnosed with M.E/CFS for 20 yrs now. she has been ill for more than half her life. my husband started having symptoms after he took the Hep. B vaccine, my symptoms worsened after I took it, my daughter had a course of allergy shots then the flu vaccine just before she and I collapsed. I sometimes wonder if we just challenged our already dodgy immune systems too much. Did you get sick after a vaccine? I hear a lot of people that did. just wonder if some of us are more likely to react badly. I'm always playing detective trying to find a cause, treatment, I HATE not being able to fix this.

well, enough of my chattering on. hope you are having a good day. Phyllis

Hi Phyllis@MountainMyst
Me too..always trying to fix this,always looking for answers.
I miss the old me who earned a good living,was buying her own house,had great social life
It sucks doesnt it to have an ill daughter too?
I would put up with anything for the rest of my life if my daughter could completely recover..so sad to see their youth pass by in a haze of illness
Not sure what triggered me.. Was working hard, not taking any breaks. Fulltime job plus saturday job plus studying,took in lodgers to help pay mortgage,helped my mum and dad, single parent since daughter was four.
So it may have been too much stress not handled well..i dont really know..all i know is i was ok xmas 1995 tho had a bad fall and banged my head on a very icy Boxing Day and by January 96 felt very ill..soldiered on til July 1996 when i got gastroenteritis and never picked up again after that. ( tho have recovered to some extent over the last ten years or so)
The fact so many family members contract this illness,specially mothers and daughters,makes me think there may be hereditary/ genetic reasons behind it?

Nightmares.... ...no only on meds for underactive thyroid and for high blood pressure and the nightmares predate both..
M.E = Myalgia Encephalomyelitis ..Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord..so not surprising really that some have nightmares..what alarms me is how bizarre they are and how terrifying..the part of the brain that goes into REM sleep doesnt work properly,i' m told, so dreams become like hallucinations,and obviously makes an undisturbed sleep pattern even more difficult to achieve..
All i know for sure is - this illness wrecks lives ..
Sending hugs Phyllis,we will have a big party one day when we all get well again X

Hi Nursy@nursebean
Yes i think frequent short breaks benefit everyone both sick and well
For CFS sufferers its good if you can avoid Boom and Bust..real life gets in the way but we need to pace ourselves
Many Sufferers say,follow the 80 % rule..do just 80% of what you feel you CAN do..
I never seem to have the patience for it, i try to get loads done,but that obviously hasnt worked out very well for me long term,and is counter productive
Hugs Bean,take care and be gentle with yourself xx

Oh you poor loves, @Candice Marie, @MountainMyst, @nursebean and all the other feisty sufferers of this dreadful illness. Just want you all to know how fantastic I think you all are to remain so cheerful and strong despite the discomfort and frustrations you must experience on a daily basis.
Hope you are all able to take things easy and are learning to chill out and relax as far as possible. Hoping for improved health for you all in 2014. xxx

Thanks @callyanna really appreciate your kind words xx

Thanks everyone. I must say I've been struggling over this Christmas period and I wonder if it's because I haven't had a fast for a week or so (or whether it the course I went on...I had to drive further than I've been and then the session was for two hours, then drive back. It felt as though I'd run a marathon with a hangover. Just awful ) anyway, what worried me is that someone said you never get over ME and if you do then you probably weren't diagnosed properly in the first place. Is that true?

Anyway, on a more positive note...I'm looking forward to my first fast of the year on Thursday and maybe that'll give me the boost I need. Do you guys find fasting helps?

Bean

Never say never Bean @nursebean!

It's probably very hard to recover completely from a total physical breakdown/ possible autoimmune illness / perhaps retrovirus or enterovirus ..nobody seems to know exactly what it is! ....
but i know its possible to at least make a partial recovery.i would say i am about 70% recovered but only for about 75% of the time because i do have relapses...19 years of this awful illness for me now,about 12 for my daughter..i wd say i began to get a little better after about5 years.
BUT there are things we can do to help ourselves and speed our progress..lots of it are trial and error to find what works for you.
For me, reflexology on a weekly basis for two years made a big difference,mainly decreased the general aches and pains and soreness and relieved my IBS symptoms.
Also,there are products available to boost the adrenals - ( which are said to be exhausted )
Too expensive for me,but it could be that they or other complementary medicines/ therapies would bring about better health.
And i believe that the simple passage of time helps too for many of us.
On your other point,re your course,sorry to hear how much its taken it out of you Maybe you need to postpone it until youre more up to travelling ?
Plus you need to weigh up if in the longterm the results will be worth the effort youre putting in,and won't be counterproductive by just making you generally more run down
Its a bugger isnt it
For the course we did,we travelled there and back by taxi,got help with the costs.Maybe you could ?
though we were whacked out after each session,we were learning to recondition our hearts and lungs..weakened by years of being inactive thru chronic illness..by building up cardio exercise ( We had to buy an exercise bike and slowly build up from just moments on it to - in my case - managing 20 minutes twice a day) so the longterm results were worth it, as we definitely felt the benefit of the increased exercise, tho i must emphasise it took well over a year to increase our exercise sessions to useful levels.
Never forget,there's always some research going on,so perhaps in time they will find suitable medication and we will see a transformation in ourselves and a return to full health and vitality.Fingers crossed!
Ps just hoping that the fasting helps with repairs and healing..keeping faith it does
Am sure the almost two stone ive lost so far can only be beneficial x

Hi CandiceMarie, I do think the worst part of this is watching my daughter suffer through it. I know what you mean about bargaining with God. I'll stay this way forever, just make her better. I mean we are better than in the beginning, we CAN get out of bed, some aren't so lucky, and Deidre slept for the first 2 yrs, practically crawling to the bathroom. so we are thankful for what we have. I would just love for her to be able to have a life outside this house.

I do think there is a genetic component. my Mother, and aunts all had or have Fibromyalgia. I had it from my teens, then progressed to the M.E/CFs. Deidre and I always had immune system weakness I think, you know, catching every thing going round. allergies, my asthma, psoriasis. I think your theory about the nightmares is probably right. I, too and on high blood pressure meds, and thyroid , and no nightmares. sure wish you both didn't have that on top of everything else.

nursebean, never give up hope. I don't know of anyone who has completely recovered, but I do know a couple that have gotten much better. they were able to return to work and their life, just have to be careful. one had been ill for over 7 yrs, so don't give up. As CandiceMarie said, there are lots of people trying to find a treatment.

CallyAnna, thank you so much for your loving posts. it's so hearting to have you care about us. we are mostly used to less supportive people. here in the U.S. I find it interesting. If I say I have CFS I usually get a smirk. If I say M.E. folks tend to step back a bit, like they aren't sure they want to get too close. most of the time I don't say anything unless they ask why I use a cane. thanks again.

I'm really hoping that eventually we will see results from the healing aspects of this way of life. anyway, I'm loving the positive effects. sending everyone a big loving hug. Phyllis

So from what you say @Candicemarie and @MountainMyst there's no cure but symptoms can be reduced. It's just a case of waiting for further research. There is a clinic here called The Optimum Health Clinic (have you heard of it?). The chap who started it says he had ME for about 10 years but is now better. He runs courses for people with ME/CFS and says people are now better. However, when I looked at the site, in a hopeful state, I discovered it was extortionately priced. Considering most people with ME would have lost their jobs, I don't know how anyone could afford it. There is even a CFS/ME yoga DVD available which is over £11 much more expensive than normal DVDs...I just don't understand it!

Anyway, I'm lucky for the next couple of weeks or so because my dad is going to give me lifts to the course, so hopefully that should help. After that he's off to Canada to stay with my sister and her two little boys, so I'll see how I manage then...doh!

At the moment, as part of the course, I have to write down everything I do, every hour. Looking at it I can see that most of my stuff gets done in the morning and I then watch tv or read for the rest of the day. I don't know if I'll ever get back to work so haven't a clue what I'm gonna do. It's all scary stuff which is why coming on this site is so good. It's a boost for the soul!

Sorry I went on a bit there! Here's hoping you all have a much better, much more healthy 2014! Happy new year my fellow CFSers

Bean

Hi bean, so glad you will have transport for a bit, that will make it easier to cope with the course. maybe by the time he leaves for Canada, you can find someone else to help out?

I haven't hear of the clinic you asked about, but I would be leery of anyone promising a "cure". I've tried so many things that promised cures and found mostly that folks that were cured by those methods probably didn't have M.E. to start with. as for prices, I understand the reason for the outrageous prices, it's called greed. of course I could maybe be a bit cynical.

I'm glad you are righting down what you are doing. it's helps you figure out when your "good" times are. I ,too, can't do much in the afternoon. if I don't do it in the morning, it's darned near impossible for me to do anything.

I'm so sorry that you are dealing with the uncertainty this illness causes. If your course doesn't help you enough to return to work, hopefully your doctor will be able to get you disability payments. that at least would help with the money pressures.

well, I've gone on a it myself. wishing you a happy and healthier new year, bean and all our fellow travelers. Phyllis

So glad youre getting lifts@nursebean] x x look forward to hearing more about yr course,and i think keeping note of activities helps.. I did that for many years and it was useful.
And @MountainMyst you just reminded me of something..
As a little girl,my daughter had unexplained aches and pains...doctors cdnt work out what was wrong..they said it wasnt juvenile arthritis and reluctantly called it " growing pains" for want of a better name
I wonder now if it was fibromyalgia and a precursor for CFS.
The genetic link ..sorry to hear about your family MM..
daughter's half brother also has it..sometimes i wonder,where will it all end.

Happy 2014... Here's to getting a better quality of life..praying that we all see big improvements in the months ahead!

Hi CandiceMarie, I, too, had "growing pains" when I was little. funny that, I wasn't growing quickly, was "vertically challenged" even thin. I do think that fibromyalgia is a precursor, or maybe early stages of the same illness.

one thing I have been wondering about. Do you have neuropathy along with your M.E. ? the past couple of years I've been having increasing symptoms. I think a lot of my pain is nerve pain, medication doesn't really do much. the doctor wanted me to take Lyrica, but the side effects are just too much. I've learned to live with it. my only problem is it interferes with sleep. maybe that's why I don't have nightmares, you have to sleep first.

I really think this way of eating, tapping into the healing powers of the body, may be our way out of this particular nightmare. especially watching our children suffer.

I finally saw a number in the 130's today. made me happy. hope all is going well for you all. Phyllis

Yes i do have some neuropathy symptoms..i have tingling and numbness in fingertips,restless legs and dizziness...the fingertip tingling is like someone pushing pins down my fingernails,only happens when very tired. Restless legs,ditto,i need to go to bed coz they wont stop til i do. ..dizziness has improved immensely since ive been 5:2 ing...lost a lot of confidence coz of being dizzy,unco ordinated,falling a lot..but i felt more stable within wks of starting IF
Sorry yr symptoms keep you awake.. My sleeplessness is unrelated to pains etc. Just random nights i cant sleep at all..i dont let it bother me,seeing as i dont have to go to work. Its quite nice seeing the dawns i find,how about you! X

Nurse bean- i'm sorry about that Peter Gabriel concert How insensitive of your 'friend'

I'm so sorry for all of you suffering with this. I never realised how debilitating it is. Thank you for sharing and best wishes to all of you