Alternative treatment for Chronic Fatigue Syndrome

[freedomatacost]

I said I would ask on behalf of a friend who suffers from chronic fatigue syndrome (CFS) if anyone out there could lighten her load. My friend does not have access to a computer. She is 36, a single parent with two kids 6 and 10. When she was 21 she suffered greatly with all the many symptoms of CFS and has been under the doctor with it ever since. Now it is mainly tiredness and she hates the thought of living the rest of her life like this.

I confess I know very little about CFS but hope there will be someone out there that does and will be able help in some way.

Take a look at this website Its quite controversial, but I have known 2 lovely people get their lives back after years of suffering with this process.

I can back up 'positive attitude's' post with my own experience. I had my life devastated for years with CFS/ME. I was diagnosed and treated by the country's best neurologist in the field and under ho care made little progress. The Lightning Process gave me my life back and that of everyone else I have suggested it to. It's controversial because it upsets other medicos agenda (esp the ME association who campaign to find a virus that doesn't exist). It's worth noting that The Lightning Process is being sponsored in an NHS clinical trial by the University of Bristol hospital because they see so many people recover through it.

Bump

I suffer with it on and off. Got it after glandular fever during freshers week at uni and have never managed to hold a full time job since.

That said, I am incredibly badly affected by the weather. Could your friend get on a sunbed whilst the kids are at school? Vitamin D injections are available from the doctor too.

We actually have a sunbed which I know some people are really against, but I just use it now and then when the kids are in bed. It makes the world of difference to my pain threshold.

well.......
i have been ill with this for 9 years.
there is no cure and not really any effective treatment - i have spent a lot of money over the years (in the beginning especially) on all different kinds of treatment against the advice of my gps who told me not to waste my money.
anyone who finds a cure/effective treatment for this awful illness will in all probability win the nobel prize.
your friend will have to rest.pace her activities and live within her limitations - all chronic illnesses do improve slowly over time.

Freedom, you didn't have to write "bump", you could have acheived the same bumping effect by writing "thank you very much for your posts/advice information. I'd still welcome any more".

Then you wouldn't have looked rude and ungrateful.

I suffered severely from Chronic Fatigue about 7 years ago - I lived by the rule that NO MATTER how you are feeling, you do the same amount of exercise. You start off with something really small, like walking the length of your hallway and back, and over the days and weeks, you gradually increase the activity levels.

So, for example, if you wake up one morning and you feel like you could take on the world, you don't decide to make the most of it and go down the high street shopping/go for a walk in the park. You only do your walk up and down the corridor, and then you stop your activity. Doing too much on good days gets paid back the next day a hundred fold. It's not worth it.

On the flip side, if you wake up and you feel like you can't even lift your arm to feed yourself, you still walk up and down that corridor, even if it takes you an hour.

I did this, and gradually moved from corridor, to stairs up to flat, to corner shop, to bus stop, to half hour walk in park, etc etc.

This is the only thing that helped (besides staying completely clear of alcohol), and I managed to get over the worst of it in 6 months. When I have a bad virus, it still always hits my energy levels first, but at least my day to day life is normal again.

BenchWench feeling touchy are we? That was unnecessarily harsh on the OP...

yes v harsh bench

Absolutely agree on the no alcohol. Even a small glass of wine can set me back months.

No,I disagree, and thank you BenchWench , I bothered to post a link and give the first encouraging post to the OP and it was ignored. Obviously not good enough!!

Perhaps if bench had actually bothered to post any of the advice that has apparently been ignored, positive, there'd be more room for her on the moral highground? As it is, she simply swooped in on a thread, insulted the OP, and disappeared again.

Sorry, OP, don't mean to derail the issue.

Another recommendation that always helped me was to avoid fatty foods - your liver has to work harder to process them and as it's already compromised, it just leaves you feeling nauseous (well, it did me anyway).

Oh boy, I remember the 'exquisite' alcohol intolerance. 1 glass of wine and a hangover like Ollie Reed the next day!

Here's the NHS page on the Lightning Process (LP) trial:

www.bristol.ac.uk/ccah/research/childrencomplexhealthneeds/chronic-fatigue/smilestudydocuments/infoforparents.pdf

Page 9 shows the results of the ME association's research into therapies for ME/CFS. LP comes out top and that's interesting as the ME association campaign heavily against LP.

Rhodiola Rosea (Siberian Golden Root)

You have to make sure you get the Rosea variety.

I am very, very sorry! I did not mean to act as though I had not listened and yes, I should have acknowledged but at the end of the day, I was just trying to get as much info' for my friend. She is single parent, cannot make ends meet, and is being forced to find employment when she is already "going under". She is a one in a million friend, who has hepled me through the worst time of my life. I wanted to show her that she was not alone and that people cared. I only "bumped" to get as much attention and info' as possilbe. I am new to the site and did not know it was a taboo! Please accept my apologies and keep the info' coming on behalf of my friend.

Please remember that although ignorance is not an excuse, everyone has feelings, I am doing this with the best intentions, and if u put people off, it will only lead to people not using the site and more women suffering alone!

Please can I say thank you to all who have contributed! I will print what has been written and let my friend read it, I am sure it will help with her struggle. Thanks agian!

Forgiven, Freedom, I was probably a bit tetchy, too as I was having a bad day!

My DD has been suffering from severe CFS/ME for the past 3 years. She spent a year housebound, 6 months of this unable to get out of bad alone, needing feeding and lifting to the toilet at the age of 14. She is now 17 and is doing ok. She is a long way off leading a "normal" teenage life yet, but is starting to take small steps back into education and living a very restricted life still. I am only telling you this so that you know that I am saying it from a position of knowing how hard CFS/ME can be.

I wish your friend well and I hope that something here can help her out. The LP is very expensive, by the way, but hopefully the Bristol research may hurry the NHS into making it available free of charge, maybe. Does your friend see a specialist consultant? If not, she should ask for a referral to one from her GP.

Thanks for forgiving me, I won't ever bump myself again. I am realy grateful that you are all trying to help my friend.

I was very sorry to read about your daughter PositiveAttitude. It is the worst thing in the world to see your child suffer. I cannot imagine going through what u have been through. I am so, so sorry.

I am English but moved to WA seven years ago. My friend has a consultant in Perth she trusts but I am not so sure. Her GP has prescribed steroids for her and my freind says this helps - gives her energy, but I worry about such a young beautiful woman, taking these and the side affects.

For info' my freind does not drink or smoke and eats healthy, except for chocolate! She struggles with her weight but is not big and this is not the issue.

I will try and get her to ask questions. She is very knowledgable about CFS but might not be aware of the latest developments, (WA is short for "Wait Awhile"). I am sure it would help her to communicate on this site with all of you.

Thanks edrisco1 , I have no idea whether my friend has heard of the "Lightning Process" but I will make sure she "Googles" it if she hasn't.

Thanks also to ilovemyhens, I will also get her to look into Rhodiola Rosea (Siberian Golden Root)

Thxs Gracey123, My silly friend "toasts" herself in the Aussie sun, so I think she gets enoung sunlight but she might need some Vitamin D injections??

Thxs also NoWayNoHow, u r so strong! Like u, my friend has fought to lead a normal life. She could not exactly escape it because of her kids- they were not going anywhere and her ex just made things worse. U r an inspiration! Well done and thank you for sharing.

Sharbie - what u describe about rest-pace her activities is preciscely how she copes at the moment. She sleeps during the day when her kids are at school and goes to bed at eight when they do. She paces herself. I am twenty years older than her and I have more energy. U r right, she has to be intune with her body and not over stretch herself. However, like anyone with an illness u cannot help but try to find a cure or help.

U r all wonderful with sharing your knowledge and trying to help people who suffer from CFS! Thank you

Thank you all so much!

Another vote for the lightning process here. Has really helped my 17 year old daughter and I know of several others with ME who did the course and have also been greatly improved. I know many people are sceptical (I was too) but it really does seem to work for many people.

Freedom, you have been fairly gracious about what was a pretty sharp post from me.

Bumping your posts is of course fine, just that there are ways and means and people like to be thanked.

I hope your friend finds some relief.

My friend, who I am going to call Bigheart, read all the great advice above and she was overwhelmed and happy with the response and information. So thank you all so much!

Unfortunately, Bigheart cannot take herbal remedies because she is on anti-depressants." She had never heard of the "Ligfhtning Process" ("L F") but was very excited and hopeful about it.

Bigheart has a friend who is just going through the first (and worst) experiences of CFS and this freind has access to the computer. Bigheart is going to let her know about "L F" so that they can share info.

I Googleed the "Lightining Process" course in WA but so far have not fouund anything.

Thank you all for helping my friend, please keep the info' flowing especailly if u know of a course in WA

Thanks fromdownunder x

Hi Freedom
I also googled for a link for you - for a Lightning Process Practitioner in WA and found the following link for one in Perth - hope it helps.

iancleary.com/

WOW! Thank you so much DazR for finding this out for my freind, it was very kind of you!

My friend is on benefit so "The Lightning Process" might be out of her financial means at the moment. The Oz Health Service it more like the USA and many Brits return to the UK because they have to pay for health care here. There is "Medicare" which is sort of like the UK Health Service but not as good.

I realy appreciated your effor DazR, and will definately check out the link u gave me in Perth. Thanks again

Hello folks. Wasn't sure whether to post a new thread but saw that this one was fairly recent so hope someone might be able to pop by with some advice of some sort. It's a very long story but I'll do my best to keep it short.

My brother has had ME/CFS for 16 years, seemingly triggered by glandular fever at University and also possibly excessive drug use in late teens (the latter is purely me speculating- don't know whether this is a known trigger or not). In the early years, he was very ill a lot of the time. In recent years, he has been pretty stable. At times REALLY well, but most of the time just good enough.

However, he very occasionally has huge crashes and is having one this week. The main symptoms are twitching/stiffness in his legs and he is finding walking very difficult at present. He is also experiencing a 'tingling' sensation throughout his body and is having a great deal of trouble sleeping.

Now, where it gets complicated is the anxiety. To me, it seems a classic chicken-and-egg situation. Health problems trigger massive anxiety which then worsens his physical symptoms. His girlfriend is due to have their first baby next month and he is extremely anxious about the birth and the early days of looking after a newborn. His job is also at risk (Youth Worker), all of which is clearly contributing to his poor mental health at present.

He has been put back on Citalopram which we are all really hoping will lessen the anxiety and thus help him to rationalise his physical symptoms a bit. Currently, every ache and pain is over-analysed. He is very, very frightened and seems convinced he is going to become paralysed and end up in a wheelchair. I tried to use some 'CBT' type approaches with him today e.g. helping him to rationalise his symptoms a bit by reasoning that the tingling feelings are not likely to lead to paralysis and reminding him that he has felt like this before and he recovered. He tells me he feels suicidal at times because he just can't see a future free from ill-health. He is just so bloody scared and I don't know what I can do to help him.

I don't imagine there's much anyone can say or do to change this but it really helps to write it down and it would be good to hear from anyone who has experienced anything similar.