How I recovered from Chronic Fatigue Syndrome

How I got ill

As with many people, it took me quite some time before I even realised I had Chronic Fatigue Syndrome (CFS). I'd heard of ME, because a friend of my mum's had it for many years, but knew nothing about it. Although ignorance is not bliss, I don't know what I would have done if I'd known it would take 5 years to recover.

I returned home from travelling in India and almost immediately came down with a nasty virus. After a few weeks I went to the doctor, who said to come back if it didn’t clear up after two more weeks. I was a regular visitor to my local surgery over the next few months, and my doctor muttered something about post viral fatigue syndrome, without offering any explanation. Instead he sent me for more tests at the London School of Tropical medicine. According to every test I was a perfectly fit twenty five year old, but I felt awful. I had a permanent feeling of having flu. I had no energy, a sore throat, and huge circles under my eyes from the difficult, empty sleep which seemed to leave me feeling even more exhausted than when I went to bed.

After a year, I was referred to Professor Pinching at St Barts who confirmed that I had ME, also known as Chronic Fatigue Syndrome (CFS). It took me five years to get better, but I did and I am now fitter than I ever have been.

So what made me ill? I believe it was a combination of several factors:

• For several years before the ME started, my general constitution was poor. I seemed to contract almost every virus doing the rounds, despite a reasonably healthy diet.
• Prior to going to India, I took every recommended vaccination and more, leaving my already low defences further weakened.
• I was away for a year, didn’t eat any meat, I got ill with various stomach problems, and became underweight.
• I have a tendency to bottle up my emotions and do not deal with stress very well. I felt frustrated and directionless and unable to express this to anyone. This I believe to be a crucial factor in weakening my immune system.
• Once ill with CFS I made things very hard for myself – I continued working for two years and trying to behave as if I was completely normal. I didn't accept my condition and my reduced ability to live day to day. It took me a long time to admit to myself and everyone around me I was ill.

What I Tried To Get Better

I tried many therapies: acupuncture and homeopathy didn’t seem to have any effect. Aromatherapy massage was relaxing for the time I was there, but had no lasting benefit. I changed my diet: I cut out wheat, dairy and alcohol. I took supplements. At Barts, I was subscribed anti depressants to improve my sleep. None of these helped me.

After two years of denial I finally admitted to the world I was ill. I had felt such shame, such inadequacy, and was so secretive about my plight. One weekend I visited my parents and broke down. I was inconsolable and couldn’t stop crying. I had never allowed anyone to see me like this. The next day I felt an enormous relief. I see now that this was my first step in the right direction. I stopped work, moved back to my parents’ house. My life was on hold. My sole aim was to get over this awful illness.

A year later I had improved a little: I had more energy and was able to get out occasionally. I was visiting a physiotherapist, who put me on a course of graduated exercise. Despite all this, I was a long way off being able to lead a normal life and still felt terrible for long periods. I became increasingly frustrated, angry one day, silent and morose the next. It must have been difficult for my parents, seeing their son in such a state.

Three and a half years into the illness I started seeing a psychotherapist. I had always scorned the shrink’s couch and what I saw as wallowing in one’s problems, but I felt desperate. It was the best thing I have ever done, illness or no illness. I had a whole hour every week to speak intimately and in confidence about myself, about what I had been through. I told her things I had never told anyone; nothing particularly remarkable, but for me very personal and not easily divulged. I do not believe that friends or family can properly fill the role of a therapist. Of course, it is wonderful to have intimate, meaningful conversations with those closest to you. But, sometimes you need to face up to uncomfortable truths, and personal change does not take place easily.

How I Got Better

As I wrote above, I believe the cause of my illness to be a weakened physical and emotional state, exacerbated by stubborn denial. Dealing with these caused me to gradually improve. Because I bottled my feelings up for so many years, psychotherapy gave the opportunity to express myself and explore my emotional being. I started to really enjoy myself in a way I hadn’t since I was a child, even through the illness. It’s so good to share your feelings and thoughts with others. You just end up going round in circles on your own. Some things go beyond cold logic, and I have found there is a great difference between intellectually knowing a fact, and actually realising something to the core of your being.

I know that some find it offensive, almost an accusation, to be told it is "all in the mind". I agree that it most certainly is not the case. But if you want to get better, one of the most important things of all is to have an open mind. This promotes acceptance, and a willingness to change. It did for me anyhow. Also, I clearly had issues that were perhaps independent of my CFS, which I was able to deal with through my therapy. This in turn meant that all my internal resources could be directed towards healing my chronic fatigue. So, one piece of advice I would give to someone with CFS or any other chronic illness: are there any other parts of your life and well being you can address? Something maybe not so huge and all consuming as the main illness that will give relief. If so, then dealing with that will assist your recovery.

Time also played a part in my rehabilitation. Perhaps things ran their course. I definitely made things worse for myself initially – I am sure I could have got better a lot quicker if I had stopped work straight away, and aired my feelings as I needed. But also I think my system needed to recover from the injections and battering it got whilst travelling. And also, I must say that since I got over my illness, I am a far happier, balanced person than before I got ill, so in a somewhat perverse way you could say my illness benefited me.

During my illness it took me a long time to get organised. For years I almost surrendered myself to the medical (and alternative medicine) professions. This "surrender" is very different to being open minded and accepting. I didn't realise how important it was for me to take control and to be more demanding and questioning of the "experts" that I regularly saw, and often paid good money to see.

Over the last year, I improved markedly. The periods of that “ME feeling” grew shorter and less frequent, and I felt more confidence and robust. I did voluntary work with the Citizens Advice Bureau. I met and fell in love with my partner Gaynor, and now I am working full time and playing in a band. A few months ago I completed a three day bike ride across the South Downs. I was knackered, but so was everyone else.

I can’t s


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Related Websites
http://www.afme.org.uk
Action for ME, a UK charity for CFS, ME sufferers
http://www.cfspages.com
http://www.chronicfatiguesyndrome.me.uk
This site includes a forum and live chat, as well as articles, advice and stories from CFS sufferers.
http://www.fightingfatigue.org
Blogs, articles and lists of web resources for CFS and Fibromyalgia
http://www.healingwell.com/pages/
HealingWell.com Resource Directory
http://www.me-cfs-recovery.co.uk
Information about CFS and treatment at me-cfs-recovery.co.uk and me-cfs-treatment.com


Comments
By Atheana, 18-Aug-2008 08:19
Andy, you're an inspiration to us all.
By answerbac, 14-Dec-2008 09:19
you are an inspiration, I wish I could name all the doctors ive seen and cures ive tried I always seem to end up listening to mind doctors. When all else fails I think.
By DILLYDANCER, 22-Dec-2008 22:15
I thought I was going Mad!! Thank you for letting me know that there will be a light at the end of the tunnel!
By dru, 11-Feb-2009 03:40
i say that every day it wont eat me!! i will fight you all the way!!! your story gives hope to those who have lost hope.
By anon, 08-Mar-2009 00:43
just had a relapse you have given me the strengh to carry on cos i know i will get there
By JG, 26-Mar-2009 01:06
Well done. I had it for 11 years. It was the psychotherapy that helped me turn the corner too. I'm completely recovered.
By Andy, 26-Mar-2009 04:43
Glad to hear it JG, thanks for your comment - would you be willing to write your story on this site too so that others can read more about it?
By Susie, 28-Mar-2009 10:06
Andy, you've done an amazing thing by creating this site and telling your story. I absolutely believe that I can beat this illness. Thank you for giving us all hope...
By Ian, 07-Apr-2009 05:35
It was probably the vaccines that destroyed your health. http://www.youtube.com/watch?v=kyR2XeLjYTU
By Andy, 07-Apr-2009 16:25
I definitely think the vaccinations played a large part. I'm pretty reluctant to have any more that's for sure, especially if they're putting mercury in them
By liz, 24-Apr-2009 01:15
thanks for your honesty and encouragement you're and inspiration. God bless.
By Ela, 08-May-2009 14:34
What an amazing story. I am just beginning to realise that I have this disorder and what little help there is from the general medical profession and how you are left alone to work it all out. Your story has helped me a lot. Keep going!!
By Julia Stentoft, 11-May-2009 12:11
Thank you Andyfor sharing your story in such a beautifully clear and uplifting way. It has given me renewed hope and inspiration.
By trisha, 03-Jun-2009 22:48
As i,m back in relapse it has renewed my faith that i can get better again,, it,s like being a yo-yo dieter i still seek the change oif mind set that will finally turn my life around. Has anybiody any opinions on the lightning process??
By sue, 15-Jun-2009 11:16
i have just been diagnosed today. i am a bit shocked as i have been like this for a while and didnt know anything about CFS. i am a bit weepy but your story has given me hope thank u
By chris, 19-Jun-2009 18:03
wow, the manner in which you became ill is identical to mine. The travelling, weakened immune system, emotional stress. I have improved a lot, and your story inspires me that one day I will be 100%.
By MA, 27-Sep-2009 14:18
As a undiagnosed m.e. sufferer I can not thank you enough for this website. I have gone from totally bed bound to getting up alittle 25mins-4 hours most days (in 13 months of illness) To read stories of others recovering is so inspirational. I don't rely on any medication and thought your story is going to help me the most. It is good for people to add more comments perhaps too, thanks so much.
By AF, 27-Oct-2009 19:49
Andy, I sound very similiar to your case. Just wondering how your sleep improved? did you start to get better natural sleep over time or did it just happen over night?
By Andy, 28-Oct-2009 08:31
My sleep improved gradually and it took quite a while. It didn't always seem like it was getting better either. Having a more positive frame of mind definitely helped. Also when I was able to be a bit more active my sleep improved slowly because I was doing more. It's a balancing act though.
By AF, 28-Oct-2009 18:27
Thanks for the reply. yeah I have found that as well I have only had Post viral fatigue syndrome now for 3.5 months and have been on sleep meds for 2 months. reduced my working hours to 5 a day and seem to be able to manage this but with a little difficulty. thanks again your story in an inspiration. cheers Andrew
By Andy, 02-Nov-2009 17:23
Hey Andy could you contact me on my e mail da_foles@hotmail.com I have a few questions to ask if that is ok? Cheers
By donmcg, 18-Dec-2009 19:00
Thanks Andy for that open and frank explanation of your experiences of m.e. over the last 5 years. It was though unclear as to what started the process of recovery.Still, I wish you well and that you remain clear from now on. All the best........Don.........
By Anna, 23-Jan-2010 03:51
I have a very similar story to yours. Prolonged stress, illness and an overload of chemicals (both natural and synthetic) on my system is what brought it out in me. I don't think it is co-incidental that you were living in India with all it's curried and spiced food - and that these foods are very high in natural chemicals. I had to go on a very strict low salicylate diet (as well as no processed foods), get rid of all the chemicals in my environment and completely change my attitude to life. I used to get unnecessarily stressed about things and always be trying to do too much, now I have a more positive and slower pace to my life. It took a lot of work but the changes were gradual and manageable over time. Five years on I too have recovered and am living a happy normal life.
By sue, 31-Jan-2010 07:35
but you dont say how you got better
By Andy, 29-Apr-2010 18:02
Hi Don, sorry you didn't find my story completely clear. That could be in part because one can never say with 100% certainty, as life is still going on around you and my recovery wasn't sudden, but a slow, at times imperceptible process. But I would say in broad terms for me, the process of recovery was: acceptance (admission of the problem); change of circumstances (in my case, reducing then stopping work to focus on recovery); understanding my illness (what I did to cause it, at least in part, and how to address that); exploration (trying different therapies); communication and sharing (talking about my problems and releasing pent up feelings and personal issues, plus having a positive attitude - very hard sometimes but very important). I must say that I was lucky to have a lot of support, but I didn't immediately make the most of it. After much stubborn self reliance I started getting help and proper understanding from those around me, and then I met my partner who also helped to transform my life. One other thing though: it's hard to pin point the start of recovery, as in some way for me the start of my recovery was the start of my illness. Maybe that sounds trite, but I'm now much happier and healthier than I was even years before I got "ill".
By tiredchris, 03-May-2010 10:13
I'm glad you got better, but what you've told me wont help me one jot, to get better.
By Jennifer, 11-May-2010 00:23
Well done Andy! I recently went to a presentation by a local counsellor who had cured himself of chronic fatigue syndrome. He puts the sysmptoms of chronic fatigue, ME, fibromyalgia, irritable bowel syndrome and depression and anxiety down to an over-functioning hypothalamus which leasd to over-functioning of other body systems. Honouring the emotions you are feeling when you have symptoms is the key to recovery. It makes sense physiologically and his clients seem to recover, some of them remarkably quickly. You can read about the treatment (and testamonials) here http://www.davidgreenshields.com/therapy.htm
By Melanie, 14-May-2010 13:53
Hi Andy. Congratulations on your recovery! I have copied your story to my Facebook group CFS/ME RECOVERY STORIES. I hope you approve. (I will of course remove the story if you prefer.) I'd be honoured if you would join the group and perhaps add a comment about how long you have been recovered. http://www.facebook.com/group.php?gid=284916226815
By Jeanette, 02-Sep-2011 06:19
I got CFS in the 80's - the outbreak in Helensburgh Scotland. I spent two years in bed. I have recovered completely and had no relapses at all. I did not do anything to help myself - it just happened naturally! I had coxsackie B and glandular fever. I was visibly ill for the whole time - extreme pallor,swollen glands, red raw throat with blisters and pus in my ears and throat. It was not difficult to get medicos to take me seriously as I looked dreadful and my visitors told me later that they were convinced I was dying - whilst I was convinced I was going to be cured by the next week. I sounded as though I had a permanent bad bout of bronchitis and my face was very swollen and sheet white. I was so tired I could hardly make it to the toilet, just a few steps down the hall. I felt as if my life was over. I think my state of mind had no bearing on the outcome of the illness - the emotions I experienced were predominantly those of anger and disbelief.
By Aymi, 01-Oct-2011 00:46
Thanks for your story. I live in Brighton and after having this for 5 years I'm managing it a lot better now and feel like I will come out the other side like yourself. Thanks again for sharing, its important to someone like me when having some low days.
By june,03-oct-2011, 03-Oct-2011 04:26
Hi,i had Post viral fatigue syndrome some 18/19 years ago.I made a complete recovery and have enjoyed work and family since then.However,i have had a lot of stress for a few years now and i have just started to get over a nasty virus that has lasted for over 2 months.I am now feeling some of the symptoms i had before,very sore feet.Chronic fatigue,not sleeping etc.Is it possible for it to return after so long?
By BCB, 24-Dec-2011 16:25
June, I had M.E in 2002. It was very severe, however, I spontaneously recovered after about 12 months. My children were younger then and I only worked part time. I have not been ill very often since that terrible period and managed to get through stressful situations unscathed, ie passed my driving test, got married and have a very demanding, stressful full time job. However, this year I have suffered considerable persistent stress due to the nature of my job and the economic downturn, I have also moved house again. I had a virus at the end of August this year and tried to carry on working. I could not believe it when I started to encounter symptoms which I previously suffered from in 2002. The symptoms were milder than before until my son was admitted to hospital with a serious illness, this completely floored me and the relapse became fully blown. I have now been off work since September, I have started to work from home 4 hours a day since the beginning of December. I started to suffer from panic attacks and worrying myself sick as I remember how ill I had been before. I hate reading all the stories about how long everyone takes to recover from this terrible illness. My own personal belief is the quickest way to recover from this is to accept the condition (not resign yourself to it) avoid stress as much as you can and push yourself even when the symptoms seem worse the next day. Stress was most definitely the main contributor to my relapse. I am hoping to return to work ASAP but have advised my employers I will not be returning to the same capacity of work which I have been trying to juggle. I am also a natural worrier and I have spoken to my GP about cognitive therapy, I think most people who claim to have fatigue are or have been suffering from considerable stress. Do not despair - most people that I know who have relapsed with ME recover quite quickly. You may never suffer from it again. Hope you get better soon and keep thinking positive - i
By Gavin, 21-Jan-2012 09:26
Hi, im a fellow sufferer that started with a sore throat that never went away, it developed into an acid reflux that happened every morning and sticky mucus that would stick to the back of my throat all day. I had brain fog, bad memory, muscle cramps and couldnt get enough sleep. I would wake up after long periods of rest and not feel replenished! Id sleep tilll i started work and sleep as soon as i got home! The worst part was chronic headaches that attacked most days that caused a light sensitivity that were unbearable. Ive been tested for most things, strep throat, EBV,food allergy tests, all bloods tests, urine test, sleep clinic tests. All test results came back normal. Ive tried all sorts of vitamins, probiotics, a candida diet, antidepressants. Things got too much and nothing helped. My partner left me two years in, im not surprised everyone thought it was in my head and didn't take it seriously, which made the whole experience much worse. Over the past few years i ve been as healthy as i could possibly be and it made no difference so im starting to believe it to be a problem stemming from the mind, not the body. Its not impossible, we know there is a link between them. Toxic thoughts that were perhaps stemmed from an initial trigger such as a virus or illness. The brain uses anchored associations and goes into autopilot without your control. I believe toxic thoughts to be…..'ill never get better', 'no one believes me', 'i feel so weak', 'everyone else are enjoying there lives', im not in control', 'i have to go to work but have no energy,' 'what must people think of me,' Repetition of toxic thoughts is what makes them stronger! So the pattern begins…….you start to feel this way daily, your toxic thoughts create toxic hormones, and your body starts to become ill. If you need to take time off work... do it!, if you need to admit your down go to the doctors and seek antidepressants or therapy, read a self help book or any book for that matter. Eat at the right
By Will, 01-Mar-2012 20:39
I got CFS march 2011, I use to work 80 hours a week. I was extremely strong 29 years old guy. I never use to wear jacket in negative temperature. I never use to catch flue, or virus. All those thing came to end one day. I went to my morning job (Auto mechanic), i lifted heavy wheels and overdid the weight. Than i got off at 3pm. at 4pm i went to my evening job (security). My girl friend had terrible flue, she came to meet me at work and i kissed her. i went to bed at 1 am. Next morning i was having flue like symptoms along extreme joint & muscles pain. my neck was stiff, muscles pain head to toe. swollen glands, but no fever. I ran to dozens of doctors. All the tests (STD) and others came normal. Doctor told me that i am perfectly healthy guy. I went to another doctor who asked me to get my vitamin D level checked. My vitamin "D" level was low. I started taking 4000 IU a day. I was still feeling very tired. After a year I went to one of the doctor's i had known for a years. He was a good listener, she told me that i am suffering with fibromayalgia /CFS. He advised me to start swimming or gradually start weight lifting. I dont know how to swim, but i started weight lifting gradually. Now i am feeling awesome. I think i am 90% recovered. I just have mild pain in the muscles which i hope will go away. i few months to years. IT ALL DEPENDS ON YOUR WILL POWER. DON'T BE DEPRESSED JUST DO REGULAR EXERCISE AND GRADUALLY INCREASE THE LIMIT. I PROMISE THAT YOU WILL FEEL HELL LOT OF DIFFERENCE. DON'T FOCUS TOO MUCH ON YOUR SYMPTOMS OR READ STUPID THINGS ON INTERNET AND YOU WILL BE FINE.... GOOD LUCK!!!!!!!!!!!
By Chris Creaser - Hull, 08-Mar-2012 12:14
I've Suffered HELL'S FLAMES for the last 25 YEARS,with Fibromyalgia / Chronic Fatigue Syndrome / Myofascial Pain Syndrome. GETTING BETTER IS A MATTER OF LUCK ! - IF YOU'RE MEANT TO GET BETTER YOU WILL, IF YOU ARN'T YOU WONT !!! Period !
By Your Conscience, 25-Mar-2012 12:57
ME is not CFS. You should all be wary of using these, and related terms, interchangeably.
By BCB, 25-Mar-2012 13:26
Anyone tried reverse therapy?. I have had four sessions. It is based on reversing the way you think about the environment around you and working with the symptoms instead of trying to fight them or ignore them. You are taught that the symptoms are your friends and that they are there to protect you. If I tell my therapist that I was out walking and my muscles were aching she will ask me what I was thinking about while I'm walking, she said that bodymind and headmind are not working together the way they should be. It's all based on Hypothalmus overworking which effects other glands,ie, piturity and adrenal glands. These release chemicals into the body which cause the symptoms. I have been getting better, but believe i am holding my recovery back as i am trying too hard to get well so that i can get back to work (been off for 7 months), i have a lot of issues, anxiety, work related stress, now the addition of finance problems not being at work. I'll keep posting as i make progress. Definetley need to change the way i think about everything, get very anxious and stressed easily, also a perfectionist, work too hard. I will get better though i have before, had similar problem in 2002, but feel reverse therapy is onto something here. Watch this space!!!
By Meja, 07-Jun-2012 04:32
I found a cure!! Easy, simple in a healthy way and would love to share this revolution so everybody can heal. Who is interested? No money interest but would like to follow your recovering for personal orientated studies as i found it.
By Angela, 07-Jun-2012 10:53
MEJA MEJA MEJA MEJA I would be very interested I have had CFS for almost 28 years.what would be involved.
By Angela , 07-Jun-2012 10:55
MEJA
By Lucy, 16-Jun-2012 08:15
Thankyou so much for this, it has really helped me and made me see I can recover too.
By Prakash, 03-Jul-2012 01:44
Hi, I am 52 , 173 cm and about 170 lbs . About 5 months back my B12 level was very low but apparently I did not have any symtoms of vitamin B12 deficiency except pain in wrist of my left hand. I had about 20 shots since then apart from oral medication and everything was well with me and till 15 days back . I was using treadmill almost 5 times in a week for 25 minutes at speed of 6/7 without any problem Then on sunday 17th June12 , while going out of home early morning , i suddenly felt weakness & extreme fatigue after just walking few yards but without any chest pain.The day was normal after that but it occurred back in the night when I was walking back home. Now my life has changed , i went to treadmill on 18th June and found that after hardly 4-5 minutes i could not pull on anymore and it is same problem of extreme fatigue , infact i have not gone for my treadmill after that fearing that i will be exhausted again. The doctor advised me and I got my B12 and vitamin D tested and as per report , my B12 is quite high now but Vitamin D level is only 23. As per neurophysician, I have chronic fatigue syndrome, he has prescribed some medicines for vitamin D and B12, Calcium , carol 60K9 (once a week ) and Arcalion for 3 weeks. ANY COMMENTS
By Freya, 29-Jul-2012 03:19
Thankyou for sharing. I too have been diagnosed with CFS after 5 years of similar symtoms. I don't feel my life is stressful, and like many have tried most things with very change. If I thought counseling would help, I would. Have you ever heard of CFS bring cyclic? For example being well for 6-8 weeks then bed ridden with the CFS full blown, taking 2 weeks to recover then ok. Then 6 weeks go by and it repeats itself ?thanks again . Good health to all of you.
By Cedric, 14-Aug-2012 12:44
During the 3-5 year recovery period is there an up and down of severity of symptoms? For example, there are times when you feel worse only to come back and improve overall?
By Alex, 18-Aug-2012 16:31
Thank you for sharing. I was in a very low mood tonight after a bad relapse and needed to read a good story. Congratulations on your recovery. I have been suffering from ME/CSF since 2007. I got a nasty bout of salmonella in Egypt and felt horribly for two weeks with the usual symptoms of salmonella. Got antybiotics on site and then when I returned to the UK. I started losing weight and then after a couple of weeks I got flu like sypmtoms....well it was the beginning of the end. All the symptoms you all know made me sick and unable to work. I was diagnosed after 4 months of post viral fatigue and I thought it was a joke: I tried a staggered return to work after 8 months of sick leave ( so 12 months after it all started) and it did not work out even with few hours a week, therefore I had to leave my job ( which I adored). I also separated and now I am divorced as my ex- husband thought I was lazy and depressed and I had invented this illness in order not to work...I was too weak (and mostly bedbound) in the first 18 months to go to a psychologist and I really did not see the need because it is a physical illness but as soon as I felt a bit better ( after 6 months of extremely high doses of Coenzyme Q10 200mg three times a day, that was prescribed by a migraine specialist) I eventually did. As you say the key to start recovery ( or anyway to be more content within the limits of the illness )is acceptance and I started feeling better when I started not to feel constantly guilty for not working for not being able to take my son to the park or play football with him...Since then I felt more accepting of myself for the first time : not as a high achiever but as someone who has no conrol on anything.....it was hard and it still is sometimes.... A book that also helped me a lot is "full catastrophy living by Jon Kabatt-Zinn who introduced me to relaxation techniques and light yoga. Mr KZ helps people with chronic conditions to take charge of their illness and start the
By Alex.1, 18-Aug-2012 16:35
Mr KZ helps people with chronic conditions to take charge of their illness and start the recovery process.I have also tried a lot of alternative therapies and in a way they have all helped a bit especially with the constant brain fog, I did acupuncture, mediation homeopathy and CBT. After over 5 years now I work 2 hours a week ( private tutoring when I can ) and still need help around the house. When I am fine I can have two perfectly normal days without brain fog, I can write emails, go shopping, help my child with homework and then if I do not pace because I am so excited I am well, I will experience two horrible days...if I pace I can have even a full week with only minor symptoms. I sometimes find that if I had not had this illness I would be so successful or just 'perfect" as I was ...but really it has helped me understand that there are people who still love you anyway and that I have no control or a very limited control on my life . The most difficult part for me to accept about all this is still the look of some "friends' or family. I hope this nightmare will finish one day and I will be able to fulfil my dream to trek in Peru and reach Machu Picciu. I will let you know if I do! I wish all of you a complete recovery.
By BullSHYT, 01-Sep-2012 22:56
I don't believe you had CFS or what ever.. I am suffering 6 years.. I have tried about everything.. BLAH BLAH BLAH> I WISH I WERE DEAD
By BullSHYT, 01-Sep-2012 22:59
RECOVERY IS GETTING BACK TO THE PERSON I WAS BEFORE I GOT ILL... THAT WILL NEVER HAPPEN.. I WAS OPTIMISTIC AT FIRST, I TOLD FRIENDS, FAMILY, EVERYONE! People still think I am lazy and "its all in my head." I AM TIRED OF LIVING THIS WAY.. I WANT MY LIFE BACK.. I WOULD RATHER DIE THAN LIVE THIS WAY.
By Annmarie, 03-Oct-2012 08:27
Please don't let it beat you. I had it once before in the early 1990's, it lasted 12 months. There were days I felt so ill I did'nt think I would survive the day. I went to a naturopath in Troon and because of his positive attitude that I would recover plus some remedies, I did. Now it looks as if I might have it again and yes I could easily give up. I live alone and was diagnosed with Parkinsons Disease a couple of years ago. But I am fighting it, it's not easy and trying to be positive is hard at times but that is the most important thing. Your state of mind. Vitamins and minerals, evening primrose, co-Q-10, garlic and Echinacea. You can do it. Don't let this beat you. Annmarie
By Terry, 15-Oct-2012 07:37
I haven't been diagnosed with CFS and am never sure if I have it. I got ill a year ago after having 6 months of nausea. The first thing that happened to me was that I felt like death one day and my legs just wouldn't walk! scared the life out of me. Anyway to make a long story short, I have been going to the GP and hospital on and off for the past 18 months had all the blood tests and as everyone else seems to get told, i'm fit and healthy!!! The trouble is my symptoms do not seem to be like everyones elses or maybe they are and I haven't read the right accounts. What I don't suffer from is 'brain fog' thank goodness, I do sleep at night too albeit I seem to wake up at around 4.30 quite often fully awake. I'm not tired as in sleepy during the day either. BUT..what I do have is about a 10th of the strength I used to have to do stuff and when I do try and push myself on good days I get very sickly because my muscles ache so much and I feel like someone has attacked me with a cricket bat, normally takes me around 3 days to recover enough to 'contemplate' starting doing physical jobs around the house again (I'm trying to do up my house-taking forever because of this bloody illness). At one stage when I first got ill, walking was hard to do for long distances, now I can walk for about 30 minutes. I do also get very twitchy if i over do it, seems my twitches attack my back, my eye and oddly really twitches my hand, you can see the skin moving! Do I have CFS i still don't know, but what ever it is I do have, its a bloody battle somedays to try and be positive and like others on the site I desperately want my 'real' life back and am determined to bloody get it back.
By ush, 15-Oct-2012 21:48
Hi every one,i got electrocuted,and since then i have been having all this symtoms for like 7months or so now .is it possible that am suffering from CFS.am 28yrs newly married and can't even have sex with my wife
By cheryl, 09-Nov-2012 19:06
I have had chronich fatigue syndrome and fybromyalgia for most of my life.i just started getting acupuncture.I have been getting it for about 2 weeks now.I feel so much better.The acupuncture isn't a quick fix it's prolly goin gto take several months for me to a year for me to get well because I have had it for about 20 years.But I know I will get well I feel so much better.I have been getting up at 8 in the mourning the past 3 days!Please if you have this illness try acupuncture.I am going to start to get mine at a clinic becasue it is much cheaper.If you don't have the money go to a clinic it's really cheap.Just research your options before you go to one,make sure you find the best price because it can be real exspensive if your not working.I am going to pay only $20 a session.I am just so happy because I feel I am finally going to start living.I know acupunture may not be for everyone but I do know that most people get well from it.You just have to give it a chance.Some people respond slower to it then others.I felt a diffrance after the second time.you may feel a littler better each time you get the acupuncture.But it won't make you well over night.It depends on how bad your chronich fatigue is.Mine is real bad but it's starting to get alot better!
By Dee, , 22-Nov-2012 09:40
Hi, I'am 13yrs old + I was diagnosed with CFS this summer. Until now i felt alone because I have never heard of CFS before + felt like I was letting everyone down but I would just like to say thank you ever so much because You have gave Me hope for future X
By Adam, 26-Nov-2012 21:17
Dee, the good news for you is that nearly all kids (those under 18) fully recover from CFS. Might take some time but youll get there.
By Satish, 27-Dec-2012 10:29
I am recently noticing a lot of fatigue. I have it for a month then it goes off and again comes back. I don't have joint pain or fever or sore throat. Can this be CFS?
By Maggie, 02-Jan-2013 15:28
Terry-you do have cfs-not everyone has the same symptoms-I have similar symptoms to you and was diagnosed by my doctor. I have had it 8 months and am not fully recovered but have improved. Find a GP who understands and get referred. Also, follow advice on nutrition, sleep hygiene etc from sites like www.recoveryfromcfs.org/ and action on me. Take care
By emma, 21-Jan-2013 10:39
I love this story. I think its so important that people realise that the healing can only start when they stop working or pushing themselves to do too much. Making sure people around you have the full information about the illness will not only help them it will help you. I've lived with ME for just over 3 years now, the first I didn't get any better but after that I improved slowly. In september 2012 I started seeing a herbalist that specialises in ME (Jo Dunbar, uk)who I was told about by someone she helped cure of ME. Since september I've improved fast. I feel so much better, although I still have symptoms they just arent as bad. It is 100% possible to recover - it just needs time and rest. There is also a good recovery programme which i did for 7 months - the gupta programme it helped a lot.
By Clare T, 31-Jan-2013 09:52
Hello Andy, thank you for sharing the story of your recovery. I'm happy you are better now. I've had symptoms of CFS for a few years. I think my doctors don't really like to diagnose CFS, not sure that they believe in it.. One doctor suggested my problem might be post-viral fatigue, but in a very vague way. And then an alternative health practitioner said I definitely have CFS. The other doctors I've seen just shrug their shoulders and say they've done the blood tests, and can't do any more. So I've decided to help myself and do some light exercise (swimming), and although my muscles are aching today, it makes me feel great for a while. I also try to eat healthily, (no wheat or dairy), but I'm not sure how much this is helping so far. I might also explore your idea of psychotherapy. I always hold things in, and have always done this as that's how I was brought up. We didn't talk about things. And I feel like it needs to all "come out" at some point. I'm glad that has helped you, and I'm glad to have come across this page and the idea of doing this. I can understand that it might help, and actually the same practitioner who thought I had CFS also said that she detected a lot of anger in me, and anger can affect healing... Good luck for the future.
By Beatriz R, 06-Feb-2013 09:15
I think that your story will give everyone on here some hope for their future, including me. Today has been a bad day for me- fatigue, sore neck glands, numbness in arms, hands and legs. I told my husband that I don't know how I can carry on like this (me being selfish). I was given the diagnoses of post viral fatigue several years ago, but I know that it is more than this due to the amount of suffering I encounter most days. I have not worked for 7 months now, I am a swimming coach and loved my work, life and family but Feb 2012 I really started to feel bad and found that I couldn't manage my symptoms anymore (I would get by with working a couple of hours and then resting) I used to work through the constant feeling of having the flu the aching limbs, sore throats and viral headaches that went along with it. I knew that I was getting worse but kept on crawling through my days and then I collapsed at work one day and have never been able to return. I have read that B12 injections help with the fatigue but my GP refuses to give me them so now instead of endless amounts of vitamiins I have invested in a juice machine and will drink as much green juice as I can tolerate to try and help my immune system get stronger. I have tried the graded exercises but always feel much worse after. I look forward to the days when all this is a distant memory and intend to give my time helping other sufferers. Thank you
By Seb Ward, 18-Feb-2013 06:43
I got over me, about 5 years ago it took a good year, I got help through Reverse Therapy listening to my emotions and to enjoy life. Thinking positive was the main key to my recovery. On 27 of December 2012 I woke up with this awful dizzines a symptom I had with me, its now turned into the nasty Fatigue I suffered with all those years ago. Reverse therapy taught me not to sit on my ass all day and not to pace myself,but to do whatever I want, as you become trapped in a circle and worry your not going to feel well the next day etc. I'm writing this feeling dizzy and fatigued, enjoying what I love the most which is walking, infact I'm nearly at the top of Cader Idris a mountain in North Wales. I will let you know on here when I'm well again!
By Sam, 21-Feb-2013 15:43
Thank you Andy and to all who commented. I had had many travels, vaccinations and been An A-type workaholic. I had Viral meningitis 2.5 years ago and spent 5 days in hospital after a trip to Peru, preceeded by a vaccine booster. After 7 months of post viral fatigue I managed to hold down a contract for 9 months by working my rear off. I then got a new job worked 10-15 hour days and bang back in hospital with another virus. After a few months I couldn't work. Once a little better did I rest? No I went to China. I mostly slept but then hauled myself around the 'Avatar' mountains for 4 days. That was 5 months ago and I've been on a steady decline since. Im terrified that it will take years to get better. I'm now house bound but hypnotherapy and CBT give me hope. CBT (Cognitive Behavioural Therapy) and hypnotherapy work for everyone not just the depressed, indeed most life coaches use the same methods. If you find you are stuck with the same thoughts or worries circling your mind you may find them helpful. I get through the days by making the one thing I do if out of bed be having a candle lit bubble bath. Really really helps!
By Goldilocks, 24-Feb-2013 14:30
I came down with CFS hard in the 80s I bounced back later I relapsed. On one occasion I had been in remission so long I actually forgot. I started going to the gym and lifting weights, was getting in great shape and suddenly it hit me and it took another year to recover. While I identify with everything said there is a part of me that thinks "be careful...it can fool you. Pacing is everything." While the biking is admirable it really is over and beyond what most people do and it can set you back..not while you are doing it but not long after. I sincerely hope you can stay in remission. I am 63 and I am in my 4th relapse and it is so much harder now that I am older.
By Victria , 06-Mar-2013 01:02
My daughter has had ME ate about 4 years. She had a great social and school life. Everyone of her peers have moved on without her. She is totally isolated. She doesn't have the health to go out and make new friends and anyway I think has lost her confidence to do so even if she were well enough. She no longer uses social media I suspect seeing others living full lives may have made her feel more isolated. Any ideas? Also she won't seek any emotional support as she dipped her toes into it in the early days and sais it didnt help and would be stressful for her. I think she needs it but I can't make her do anything ...and I may be wrong...maybe it won't help. For the first couple of years she followed precisely all of the medical advice...it got her nowhere.....so I understand why she thinks nothing will help. But I find it hard to sit back and do nothing and see her so lonely and ill. Any ideas about how I can help her or any suggestions I can pass on would be much appreciated. Thank you.
By Debbie, 09-Mar-2013 04:34
My son has ME/CFS and has gone from very healthy and happy to (understandably) depressed. He is in his teens and I can't persuade him to seek psychological support he says he is depressed because he has ME/CFS when he is cured of that he will not be depressed. He is right I know on one level but I think depression may block the road to recovery. Andy - what made you change your mind and seek that kind of support? Also - thanks for the site.
By Debbie, 10-Mar-2013 03:06
Dee have you heard of the Tymes Trust? Tymestrust.org. They are a charity set up to support younger people with ME. They have a lot of helpful information including information that you can print off to give to friends and teachers to explain your illness. My son became ill when he was more or less your age. I came across the site quite a while after he became ill. I found it helpful for my own understanding and it really seemed to help his then teachers understand better what he was facing. You need to open up documents that there are links to..otherwise at first glance the site might not look that useful. Good luck.
By Lu, 21-Mar-2013 23:31
Hi all. Thanks Andy for your site and for everyone that has written. It is helpful to know that we are not alone in this. I am 29 years old, and have suffered from fatigue, chest pain, racing heart (145-160 when brushing teeth to give you an idea), low blood pressure (75/40), muscle and joint pain, brain fog,slow cognitive processing and headaches to name but a few symptoms. Despite these physical symptoms, when I went to a psychologist and then psychiatrist I was told that what I really had was just major depression. They treated me for this for more than 6 years - never really listening to me about the physical symptoms that I was experiencing - which at the time I just described as a sore body,chest pains and extreme exhaustion. As they were the experts, I accepted their diagnosis and followed their advice: Keep working, exercise regularly, eat well etc and take a whole lot of heavy antidepressants. I did this until finally after 6 years I decided to try a new GP because I wasn't getting better. She believed me! She believed that I was exhausted because of a physical cause - because she too had suffered from mayocarditis (heart inflammation) which caused her to be bedridden for 6 weeks and off work for almost a year. She (GP) and two other doctors (GP and homeopath combined, and homeopath) confirmed that I have 3 strains of the coxsackie B virus (all titres are 640 and above), as well as glandular fever (mononucleosis). They believe I have had it for more than 15 years and they all say that depression forms part of it but is a consequence of the virus and of not being able to live a full life because of it - not the other way round as the psychologist and psychiatrists felt. The reason for telling my story is that I have learned that western medicine often don't treat the body as a whole - its not how the medical profession is run and its not necessarily taught that way. I was lucky to eventually find 2 GP's that did (and who were open to homeopathy) -
By Lu, 21-Mar-2013 23:33
She believed me! She believed that I was exhausted because of a physical cause - because she too had suffered from mayocarditis (heart inflammation) which caused her to be bedridden for 6 weeks and off work for almost a year. She (GP) and two other doctors (GP and homeopath combined, and homeopath) confirmed that I have 3 strains of the coxsackie B virus (all titres are 640 and above), as well as glandular fever (mononucleosis). They believe I have had it for more than 15 years and they all say that depression forms part of it but is a consequence of the virus and of not being able to live a full life because of it - not the other way round as the psychologist and psychiatrists felt. (cont...) - that could independently confirm that this was not "in my head" - something that the well respected psychologist and psychiatrists both drummed into me. I write this to all the people that feel like people don't believe them, that they are not being heard! If you know that you are unwell - trust your gut. Its very difficult for people who have not experienced this to even start putting themselves in your shoes - and also so easy for doctors to simply say (or think), "If I can't find anything, then there must be nothing - that is science." (As an aside - not so long ago, scientists couldn't explain how magnets worked - but they could see the evidence that something beyond their understanding was happening!) In my case, people didn't believe me because I was still pushing myself to do all the things that I was supposed to do - mind over matter attitude. I know I am stubborn (Andy - I hear you!!), and this has led to me being able to push my body and simply push through life. Finally even my family have believed me and I am now off work for 3 months. I will still need encouragement - because after so long I have lost my confidence - I used to be bright and now because of my impaired concentration and cognition I don't feel like the person I used to be. I hope that
By Lu, 22-Mar-2013 00:32
I hope that for someone who is questioning their mental health and possibly even contemplating suicide because they just don't see the point of living because they feel as though they are less than half of what they used to be that you will feel encouraged - there are people who will believe you - you just need to find the right medical assistance - and don't give up looking for it!
By Bodstan, 16-Apr-2013 16:23
Im currently experiencing a flare up and was feeling a bit down & alone. However, reading the shared stories & comments has given me such inspiration. Thank You Andy & All! It is said a problem shared is a problem halved - and you have all helped in lightening my load. The support, advice, insight and guidance provided here by fellow sufferes is awesome. I realise that what has worked for one individual might not necessarily suite another. It basically comes down to getting the balance right (mind, body & soul) and that is different for each of us. But it really helps to know that we are not alone in this dilema of ME/CFS/Fibro...(call it what you will) and we can draw from one another to supply the strength & tactics to battle on. There is a light at the end of this dark murky tunnel which we are journeying through. Never lose HOPE or underestimate the Power of Prayer. Wishing you all an improvement in your life quality & health. God bless.
By Julian, 17-Apr-2013 21:29
I had been feeling ill since going on a trip to Europe in Feb. Few weeks later I was confirmed with Glandular Fever. That was 6 weeks ago. Problem I get now is the shaky feeling of weakness in my body and a pressure in my head with constant ringing noise which drives me crazy. Have strong days after I rest, but when I do the slightest bit of exercise, I feel dreadful. Tried to go back to work, but just can't make the whole day (yes, I do have a very responsible and stressful job). Can it be ME/CFS? or just not got over the Glandular Fever yet? Before the GF I was very sporty and active, fit 45 year old. Can't stand the thought of feeling this way for years!
By Amanda, 21-Apr-2013 19:34
Hello everyone.. I am 22 years old and have felt completely terrible since December 2010.. I am so tired all of the time, I explain it like someone who went to work all day and had one of those days and came home exhaushted. I do not work however because I can't. I am achy all over expecially in my knees an legs, and I have muscle twitches alot in my legs and arms which feel so weak. I have had many many many tests over the last 3 years and the only thing that they have found is that my thyroid is in the low ranges of normal and that my gallbladder was bad. I had a baby in October 2012 and I havent had a change in energy at all..All I want is to feel normal and to live a normal life, but I can't find relief.
By Ruthie, 27-Apr-2013 09:43
I have been suffering for 6 or 7 yrs, I can seem to get relief or help.I am 69yrs, I am so tired I take Lyrica 75 once daily it helps with the fibro but I am do tired of being tired. I wish I could get a gtip
By Ruthie, 27-Apr-2013 09:48
I wish I could get a grip on this exhaustion as will as the brain fog. Please can anyone direct me back to health:(
By Sue, 02-May-2013 13:26
Thank you for all the information and inspiration found on the website. I am finally coming to terms with my diagnosis of CFS/me 2 weeks ago but I have been ill for some years and in a massive flare up since my cholecystectomy last Nov. Finally.... and my GP has been so understanding but also positive. I have spent months in denial trying to keep my life together and collapsing in a chair to sleep when no one was looking.... I am told I have to 'let go' and allow myself to be ill... I just want people to understand what is wrong with me, and what I have been going through...
By Caroline, 14-May-2013 14:55
Thanks for taking time to write your story as you don't hear the stories of people recovering from ME or PVF. I have had PVF for 18 months. I was off work for 6 months and then did a phased return with many setbacks. I am at work full time again now but definitely not recovered. I still have good days/weeks and bad ones, however, the bad days are getting better and the good days are also getting better if that makes sense. I still have flu like symptoms on a regular basis. Sometimes my energy is is low and i have to wait and rest patiently until it comes back. I have a pressured stressful job in sales and i used to do long distance triathlons, running, military fitness etc. i keep trying to get back into exercise but its a very slow process. If i could pack in work i'm certain it would happen quicker. I don't have enough energy to do both at present. I'm with the Yorkshire Fatigue Clinic who i cannot recommend enough. Sue Pemberton who set it up after years in the nhs is a leading expert and has written a very useful book called fighting fatigue which is very helpful. I have recently suffered a setback when i caught a nasty infection. Sue advised me that it will take twice as long to recover as a normal healthy person (8wks for me). I'm just starting to pick up again after approx 7 wks. Went for a 5min jog and 10min walk this am and will try and do this 4/5 out of 7 days, then gradually build up by a minute at a time. This is the advice i have been given and if i have a setback then cut it back again. I also got back into swimming until my recent setback and started at 8 lengths and managed to get that up to 22 lengths over a period of a couple/few months. I'm staring back swimming tomorrow and will start at approx 10-12 lengths depending if i still feel ok by then. Sue advises that if you think you can do 20 lenths or 20 minutes then only do half of what you think you can do and dont rush anything. Do everything relaxed and listen to your body. Rest if your body te
By debbie, 31-May-2013 01:20
Julian. I hope you are now feeling better and that your fears of ME are mis- placed. If you are still ill I am sorry. Naturally as an active person you tried to get back to work. I would say if there is any chance you have ME give yourself a break. Research shows the real importance of resting in the early days especially. Those who really take a break rest and do not push themselves in the early days have a better recovery rate. It doesn't matter that you were sporty - you must still rest. Sporty people are more likely to try and push through it but I really think that's not what should be done. Generally for those at the early stages of your illness even if you cant go out and dont feel like socialising try and keep in touch with your friends. It is easy to become isolated. Some friends might start to think you are not interested anymore. If you can explain the illness and that you still value keeping in touch even if you can't be as involved. Good luck to everyone.
By Another Debbie, 02-Jun-2013 16:41
Hi Debbie Are you in the UK? If you are then should get your son a referral to the CFS unit at King's College Hospital in London. I was assessed there and am waiting to be treated. They are highly praised for the work they do, especially with young CFS/ME sufferers. Great recovery story BTW. I'm mostly housebound from CFS but I have 100% belief that I'll recover. I think all the doom and gloom regarding CFS that you read on the net isn't accurate. Everyone I know that was diagnosed with the condition has recovered, so I've no reason to believe that this is a life sentence.
By Amy, 03-Jun-2013 09:04
Hi another debbie. Can people of all ages be referred to King's College hospital?
By Amy, 03-Jun-2013 09:12
Also.......are there any partially recovered people out there? I did the Lightning process 6 years ago and am immensely improved but not enough to go back to work. I feel like I have one foot in the 'ill world' and one foot in the 'well world' which is so much better than before but I feel like I fit in neither. I'm finding it very difficult at times and would love to chat to others in a similar situation. Before the LP I was operating at about 5% and since the LP at about 30%.
By debbie, 03-Jun-2013 23:00
Thank you another Debbie. That's kind of you. We are in the UK but my son is not well enough to travel. I will look in to it though to see if we can get any tips etc. I must say that we just followed all advice from NHS blindly for a couple of years and in retrospect did not always make the best choices (though well intentioned advice) plus trying other things. As a result he is a bit reluctant to try new things as he has been disappointed frequently. But he does want to get better so we will look into this thank you. Very best wishes to you I hope it gets you on the path to good health. It would be really interesting to hear from you with your progress one your referral is in place - if you were happy to do that. Good luck! Thanks.
By suzy, 05-Jun-2013 11:36
Hi everyone, I haven't yet been diagnosed with cfs but think I may have it. After a stressful time 9 months ago I have had extreme fatigue to the point I can hardly do anything, tired muscles eg walking upstairs burns, brushing my hair makes my arms tired. But I also get lots of pins and needles and a feeling of weakness that comes and goes but only one side of my body! Has anyone experienced anything like this? I have had many blood test and brain and spine mri all is normal! I'm 31 and have 2 young children and feel like I'm dying! :(
By Ellie, 20-Jun-2013 08:28
its great to know that psychotherapy helped you so much was this on the NHS or private. If it was on the NHS how did you get a referral, if it was private how did you find a good 1? Thanks a lot Ellie
By betty, 11-Jul-2013 17:45
I understand your story I tried everything and I found out to slow down on my sugar and stay away from people that are fake, exercise every other day and make sure that your bowls are doing good for you, learn to relax and don't worry about what people say, remember every body has problems.
By Peter, 23-Sep-2013 16:03
Just looked at this site to see if anything had changed in the ME world and felt inclined to reply to Debbie and her worries for her son as this happened to our daughter aged 17 over 15 years ago. The acceptance and understanding by GP's it seems is still not there although perhaps the old ways of anti depressents (which she refused) and "its in your mind" still persist? It seems your son has the mental strength to admit that he is depressed who isn't when they are ill? What he needs is your assurance and your GP's confirmation that he will get better as my daughter did and for sure he will. What I can pass on is that it will take time and not to rush exercise as it seems to work in reverse to the norm. If he had an injection in the last 12 months followed by a throat infection then a test for Epstein Barr may prove the ME case. But how to get better? A distant friend of Lindsay's suffering at the same time had a transfusion as she was was found to be suffering from a depleted blood volume in her body due to the ME and recovered within six months but we only found that out a year later so that would have been the immediate route taken but may not be recommended by the NHS due to cost. I visited the site for that reason only to see if ME sufferers produced lower levels of blood than normal as that would make sense to me but again this may be an expensive process to prove the Vampire theory as we called it so again not available? But possibly a quick remedy with a few extra pints. Failing that it will be slow but there is light at the end of the tunnel, read a lot and systematically clean the system with good diet and natural organic products no junk, it may mean cutting things out like wheat in my daughters case it took her a while to find the balance that suited her. Learn about natural products that will firstly clean the blood,then liver & kidneys of impurities whilst allways taking a natural immune system booster. As he get's back to full health he will have lea
By Barbeque, 20-Dec-2013 04:03
mate, you suffered a bout of depression maybe, but not chronic fatigue and it is not all in the mind, if people with CFS actually go and check their various antibodies levels (which is horrendously expencive) they will have some antibodies high over the roof, which means that their body is fighting either virus or bacteria or its own thyroid, kidneys, etc.. I am in a permanent state of brain fog, depression, pain, head pressure, anxiety, fatigue, hair falling and my antibodies are waaaay to high. Yet there is no cure apparently. Well I am not intending to live like that for the rest of my life!
By Grigor, 26-Dec-2013 02:40
Sounds more like a huge depression to me. Sorry to say so. Besides the fact that I agree that it's good to talk to a therapist because of dealing with a chronic disease. But there is a big difference between M.E. and being chronically fatigued/depression. I consider myself having M.E. and besides being extremely exhausted I can't really relate to your story. My life was immediately on hold. No working another 2 years or what not. That would be impossible with M.E. Anyways thanks for sharing your story. Great you got better but it's definitely not from M.E.
By Tiredchris, 10-Apr-2014 02:56
These websites are a waste of time. For every 1 person that gets cured there's half a million who don't !!!
By Pauline Kelly, 21-Apr-2014 17:08
I was diagnosed 20 yrs ago with CFS & Fibromyalgia by a medical doctor who ref'd me to a psychiatrist. After many, many trials I settled into a daily routine of (an antidepressant) Effexor 150 mgs A.M., (a mood stabilizer) Topomax 50 mgs P.M., and for sleep Seroquel 25 mgs & Eztasolam 1 mg, both at bedtime. This combination has kept me functioning. The Effexor works on pain and depression/anxiety. However my job closed and insurance ended so i began weaning myself off the Effexor during the summer. i had also been wanting to see if it was the cause of me sleeping so much. So, this seemed like the time to find out. I hadn't felt unbearable physical pain over the years. I have a much higher tolerance for physical pain, apparently. At times, I even felt, I was in complete remission. Well, I guess I chose a really bad time to stop the Effexor. I needed to start back to work in January 2014 and I've been experiencing some unprecedented anxiety the last few months largely due to financial worries. i use to be able to interview beautifully and land most jobs, then think later about whether I really want them. Now i think about whether I want them during the interview and i'm being too picky and revealing too much. I'm off my game. Off any kind of normal schedule. Can't fall asleep until 6 a.m. and don't get up until 6 p.m. Feel like a bum. Can't keep up with simple house chores and bill paying. Don't want to go out to stores anymore. It's creepy to start my day when it's almost dark and it's certainly not motivating. Was seriously looking forward to a suicide (except it's against my Religion) as my best way out. Live alone. Parents have passed on. Only hv a therapist I could confide in but shouldn't spend the money. Go around & around w/these type of thoughts. I did get into these low periods, periodically during any give year, while still taking the Effexor. They would pass so I lived with them. The difference now without the Effexor, is th
By Pauline Kelly, 21-Apr-2014 17:21
(continued) without the Effexor, is that the anxiety is more acute but so is the situation. I am less sleepy without the Effexor but actually miss that relaxed feeling. So I guess the Effexor did help my anxiety. Geez I didn't even know anxiety was a problem for me, until recently. So, I guess, I am going to go back on the Effexor, they hv a less expensive caplet form. And, find a job that's not totally overwhelming, so I can gradually work my way back into the workforce. I know that will make me feel better about myself. Thank you, Andy, for this site that allows us to share our troubles, caused by this horrendous dis-ease.
By Tozzie, 22-Apr-2014 15:33
Amazingly inspirational Andy. Thank you! Has anyone else read that a systemic candida (overgrown fungus) infection, is a key trigger for fibromyalgia and CFS? I've noticed a significant difference in my symptoms when I rigorously follow an anti candida diet, as well as other typical treatments e.g rest, moderate exercise, CBT
By LizB, 13-May-2014 01:54
This is probably way after the fact, but Terry could you have adrenal issues? I have adrenal fatigue and the symptoms are slightly different. Good luck to everyone here and THANK YOU Andy for sharing your story :)
By Andy, 20-May-2014 13:34
Just wanted to apologise to all the genuine visitors out there who have read and commented on my story - it seems to be getting spammed a lot which is really really annoying and I don't quite get what the point in it is. I've just removed about 200 fake comments, will do a regular sweep - please don't let it dissuade you from commenting. Andy
By Andy, 20-May-2014 14:05
Barbeque and Grigor - you may both be right. It is quite possible that primarily I was depressed. The fact is I don't know, and neither did the doctors and I was diagnosed with CFS. I certainly had enough of the symptoms for them to decide this. I think this happens a lot, and there are terms that are used interchangeably (CFS / ME / PVFS etc) which don't necessarily mean the same thing, but often they are a label for the medical establishment to basically say "we don't know what this is, or what to do". I just wanted to tell my story, whatever it is exactly that I had, because I think that other people have a similar story and it may help them. I'm definitely not saying that CFS / ME or whatever is all in the mind - I don't believe it was all in my mind. I'm just saying what worked for me, and that pyschotherapy helped me - so yes at the very least for me there was a psychological component that may well have been separate to anything else, and it was this component which the therapy helped. All I know is that I gradually improved, and maybe addressing this gave more strength and recuperative powers to my body to heal whatever else was wrong with me.
By julie, 22-May-2014 12:18
hi, just wanted to add how inspiring it is to read about your recovery, I too have me and have been as low as its possible to get, I have had a few acupuncture sessions which I feel is helping along with plenty of rest and support from my hubby and friends, I am now hoping to return to part time work. I also changed my diet and included 8 glasses of water minimum per day, along with co enzyme q 10 and cod liver oil with vitamin a and d, plenty of protein in my diet. I now feel im getting back to 80 % of the old me and am very happy about this. good luck to everybody
By By Christine, 25-Jun-2014 20:52
Have been sick for 17 years on and off...have given up on a cure for some people it isin't possible just when I feel like CFS is gone I will have the worst relapse in years. My Doctors have taught me to learn to live my life as simple as possible and I take the good with the bad. Living this way is less stress I use to be always searching for a cure and then you get let down when it doesn't happen. One day it would be wonderful if a cure is found but until then this horrible disease CFS is always with you it just lays dormant until the next relapse. Meditation helps dealing with symptoms.
By Tara S, 30-Jun-2014 19:02
I'm hearing a lot of mumbo jumbo in these comments. FACT: CFS is a very real physical condition. Know how I know? Because I fought hard against this illness every step of the way, no giving in, no yoga, no therapy. Meditation made me worse bc being alone with my thoughts was too fucking scary. Want to know what "cured" me? (I put that in air quotes bc I'm not sure anyone can ever claim to be cured of CFS) Western Fucking Medicine. That's right, a combination of Valcyte, Cytomel, and Synthroid. Valcyte for HHV 6 and the other two for my thyroid. All of my symptoms (and their severity) were directly related to my viral titer levels. Now if we could get the UK government to get its head out of its ass and realize that the majority of these patients have real viral and/or bacterial bases for these illnesses, then maybe they wouldn't have to wait several years until the disease runs it's course. The first six months of Valcyte is not pretty, but I would rather suffer for a shorter period and get back to life sooner than waste my time hoping and praying.
By amit, 02-Aug-2014 13:20
I have been suffering from chronic illness now for about a year.i feel very weak also dizzy .my eyes pain a lot and the worst part is that no one believe that I have something. I have been to various doctors eaten thousands of medicines nothing helped.my reports are always clear but I don't feel normal. My family members also questions my illness. They think I am making it up.i think I should suicide now because I m tired of living like this.
By matt, 02-Aug-2014 16:40
Thanks for the good post, There are some really good dhamma talks available online by the Buddhist monk Ajahn Brahmavamso. He talks about illness and death in a very accepting way and tells a great story of a monk who became ill and was in a bad way. After years of illness and unsuccessful medical treatment in various countries the senior monk visited him on behalf of all the monks, nuns and lay people in the order and gave him permission to die. Giving him permission to let go and stop fighting against the illness was the first day of his recovery and his health improved dramatically. His talks and the talks of other teachers have been really inspirational for me and have helped me accept the facts of CFS for what they are and and to see it as a positive learning experience. most importantly they have shown the act and feeling of acceptance is the very first step on the road to recovery. I think this is especially useful for those of us socialised into competitive, goal driven western societies where we are expected to strive for success in materialistic things (that are ultimately unnecessary and unhealthy) but are out of reach because of CFS. Another, more actioned orientated practice, I have found beneficial is a set of exercises by David Berceli called Core Trauma Release Exercises. This a set of 7 exercises based on yoga and stretching that triggers the body's natural trauma releasing mechanism. I was a bit sceptical about this but essentially after a trauma an animal's body will tremor and release the negative traumatic effects but humans over think things and store the trauma in the body and mind. After watching a few vids on youtube and seeing the release I realised it was similar to what my cat was doing when she was sleeping and tried it out. All I can say is it really improved my mood and made me feel fantastic. Your body just shakes uncontrollably and releases so much tension it is unbelievably good and is comparable to intensiv
By Jason Cooke, 27-Aug-2014 11:15
Keyword for anyone with AFS/CFS/Fibromyalgia/ME and other anxiety based conditions = CHANGE. If you don't make changes, you could temporarily feel better, But the condition will return return to bite you in the future. Period! All the best to your recovery.
By AB, 30-Aug-2014 05:20
Hi Andy, Congratulations on your recovery! Have you maintained your health all these years since posting originally? I have had CFS and severe brain fog for 10 years now after what was a suspected bout of labyrinthitis. Can I ask if you had brain fog too? It is like I am living in a horrible dream all the time. I am getting to point of desperation after all these years and feel my life is slipping away from me. Do you think this could also be cured by psychotherapy? I have seen people before on the NHS but suspect they were councilors and as I understand it they are different to psychotherapists? I actually found it stressed me out more talking to these people as any response was limited and non-helpful to me. I don't have much money due to struggling with work so am reluctant to pay for psychotherapy but if I thought it could definitely help I would find a way to pay. Could you please describe the type of therapist you had, what techniques they used and the subsequent outcomes? Many thanks in advance and thank you for sharing your wonderful story! Congratulations again!
By Andy, 30-Aug-2014 06:31
Hi AB, thanks for your comment. Yes I have maintained my health since. What I found was that as I improved I would have a kind of 3 month cycle of wellness / illness, where I would have a return of symptoms, but over time the "bad" parts of the cycle became shorter and like ever more distant echoes. I never really had brain fog, no. I know exactly your feeling of life slipping by, that there's so much you could be doing, if only you weren't ill. I saw a dynamic psychotherapist (I believe) but I can't say how this differed to someone who is a councillor. It definitely helped me, but unfortunately there's no way to tell if it might help you without trying it. What I do know is it matters greatly who you see, so maybe the people you've seen weren't right for you. In my case, the psychotherapy helped because it made me stronger and helped deal with issues that were separate to the CFS, which I think allowed my body to direct more of its resources to healing - that's my theory anyhow. The techniques she used were just to allow me to talk and open up - I did most of the talking and there was no judgement and little opinion from her, more observations and support, though she did frequently challenge what I was saying, which caused me to rethink my own attitudes and opinions. But as I said, I don't think it had a direct effect on my illness, I needed it anyhow. And also I was always particularly bad at expressing myself and opening up, which was a big reason why it was so useful for me. I don't know if any of this helps, do try to stay positive and believe you CAN get better, and try to find ways to improve your life, however small and regardless of whether they directly improve your illness, because the cumulative effect of many small things can be powerful. All the best, Andy.
By Sofy, 19-Sep-2014 13:17
I have had Chronic Fatigue for 4 years now, after being ill with Glandular Fever previously. Im 17 years old and currently attempting to do A Levels the best I can. I feel constantly physically and emotional drained whilst trying to juggle education, rest and some sort of social life. You say how you changed your thoughts into a more positive attitude, I was wondering if you give me some advice on how you did this? I'm desperately struggling to carry on and do the best I possibly can. However, its proving difficult. I often feel like I'm fighting a loosing battle, along with loosing my usual positive attitude. I feel like I often just need somebody to talk to about my illness and somebody to understand. Any help would be extremely appreciated.
By Andy, 24-Sep-2014 04:40
Hi Sofy - as you say, being positive and keeping positive is very hard. It is an easy thing to recommend to people but actually doing it is another thing entirely. I think maybe you've identified a possible approach yourself: talking to someone. Is there someone who you trust that you can speak to, ideally on a regular basis? It doesn't necessarily have to be someone close, there may be a counsellor at your college, or a friend of the family, or a family member - just someone you trust who will listen without judgement. This above all is what helped me. Andy
By San , 29-Sep-2014 00:41
Real beetroot juice you make yourself is a BIG help. Get a juice. Not a cheap one. It can give you energy a few hours later or the next day. You can have it with celery and apple. Swimming is really good. Slow down do one less thing a day if you have a hyperactive nature like me. I caught a virus, I believe Glandular Fever and got CF. in 2011. Now I am determined to have a good life so I do something nice every day. I do something to make me happy. (Don't believe for a second that any of this is psychological, as life is problematic. If you have cancer they don't suddenly say its in your mind. CF is real! Specialist said body thinks it still has a virus and produces chemicals to get rid of it. I guess immune system in over drive. Eventually, with your own help diet and exercise, the body should fix the problem. Or manage it. San
By Alycia, 02-Dec-2014 04:18
Stories such as this one are very personal to me. Using the medical terms CFS & ME simultaneously, as if they are the same illness, is incorrect at best & extremely dangerous at its worst. People with CFS are perfectly safe exercising & may even improve. If you have ME DO NOT EXERCISE! You are risking your life! Here are the facts that every doctor & researcher in the field agree with. Patients that qualify for a CFS diagnosis may improve with exercise or treatments such as graded exercise therapy (GET), or at least suffer no long-term adverse effects from exercise. VS. Patients that improve with exercise therapies do not qualify for a diagnosis of M.E. Exercise therapies can and do leave M.E. patients far more severely ill and bedbound than they were before and in need of emergency care. These therapies may even be fatal. M.E. patients that are able to rest adequately in the early stages of the illness have the best prognosis. M.E. patients must strictly avoid overexertion to have any quality of life. This really needs clarification, too many lives have already been lost due to GET.
By Alycia, 02-Dec-2014 04:20
Stories such as this one are very personal to me. Using the medical terms CFS & ME simultaneously, as if they are the same illness, is incorrect at best & extremely dangerous at its worst. People with CFS are perfectly safe exercising & may even improve. If you have ME DO NOT EXERCISE! You are risking your life! Here are the facts that every doctor & researcher in the field agree with. Patients that qualify for a CFS diagnosis may improve with exercise or treatments such as graded exercise therapy (GET), or at least suffer no long-term adverse effects from exercise. VS. Patients that improve with exercise therapies do not qualify for a diagnosis of M.E. Exercise therapies can and do leave M.E. patients far more severely ill and bedbound than they were before and in need of emergency care. These therapies may even be fatal. M.E. patients that are able to rest adequately in the early stages of the illness have the best prognosis. M.E. patients must strictly avoid overexertion to have any quality of life. This really needs clarification, too many lives have already been lost due to GET.
By Alycia, 02-Dec-2014 04:20
Stories such as this one are very personal to me. Using the medical terms CFS & ME simultaneously, as if they are the same illness, is incorrect at best & extremely dangerous at its worst. People with CFS are perfectly safe exercising & may even improve. If you have ME DO NOT EXERCISE! You are risking your life! Here are the facts that every doctor & researcher in the field agree with. Patients that qualify for a CFS diagnosis may improve with exercise or treatments such as graded exercise therapy (GET), or at least suffer no long-term adverse effects from exercise. VS. Patients that improve with exercise therapies do not qualify for a diagnosis of M.E. Exercise therapies can and do leave M.E. patients far more severely ill and bedbound than they were before and in need of emergency care. These therapies may even be fatal. M.E. patients that are able to rest adequately in the early stages of the illness have the best prognosis. M.E. patients must strictly avoid overexertion to have any quality of life. This really needs clarification, too many lives have already been lost due to GET.
By Talli, 12-Feb-2015 12:31
Hi Andy, I just wanted to say thank you for sharing your positive story. I work every day to remain positive and focussed on the further, make small changes towards recovery, sometimes fall down and strive constantly to get back up again and keep moving forward. It is hard and some days it is easier, but hearing you share your positive experience is great. One of the things I find the hardest is when I am looking for answers to questions online and all I meet with is people in a very negative state. Some of the people I have made friends with have a very negative outlook but believe in hope, but I often get met with negativity and warnings that any good feelings won't last forever. Even if I have a period of wellness others with CFS will tell me it won't last. I know health is a balance that constantly needs care and attention, but to know you have found that is wonderful. I am 27yrs, female and at the onset of my CFS my partner and I had just moved in together. I had improved a great deal and have had a similar 'epiphany' through an emotional 'reveal' to those around me, I have had to stop work too. I do feel that CFS/ME has perversely made me happier in ways I might never have been. Sharing my 'dirty secret' of feeling so ill was the first step to feeling more alive, in a strange way. I am hoping to one day begin a more balanced job and get back to exercise and socialising bit by bit. If I am lucky we can one day start a family, but I need to be working first, so I have a lot to focus on and strive for! It means the world that you shared your story and proof that there is light at the end of the tunnel.
By ash123, 02-Mar-2015 09:05
Hi talli im new to this forum. thanks for sharing your storey its great o see people remain positive.i have had cfs for new 2 years i had to give up work aswell.Do you take any supplenents or medication to help ur recovery? How long have you had cfs for?
By Michael, 24-Mar-2015 16:21
The NHS told me I have CFS/ME and I have heard that you should not mix ME with CFS but how can one tell if they have CFS or ME as the NHS don't actually do any tests they just throw you in that category after all else fails.
By Jenn, 20-May-2015 06:25
Andy, thank you for sharing your story. It is very similar to my own - I got mono 4 and half years ago as a 26-year-old, but it was misdiagnosed. I never really took the time to rest properly, because I had no idea what was wrong with me for a while. I've had lingering Epstein-Barr symptoms and CFS-type symptoms ever since, and they get worse when I am run down. I've never stopped to really rest, and I work full-time. I'm recovering from a particularly nasty relapse, and I've finally decided to take some sick time at work. I'm not sure how long I'll do that - as long as it takes to get better, I suppose!
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