My Recovery From CFS/PVFS/ME/...

Hi All,

When I was at my worst with CFS, I used to search the internet for information and grow ever more despairing at the lack of people who seemed to be recovering. Now that I'm recovering I realise that the last thing on your mind when you are recovering is going back to those depressing forums - there's too much fun to catch up on!

So my first point is don't despair.

Secondly, I'd like to share the understanding of CFS/ME/etc that I came to through my extensive reading and also the contributing factors to my recovery. I'm still not back to 100% but it's only been three months since I was at my worst and I'm well on the way back to full-health. I'm not going to come back and check replies to this post, or enter into correspondence, because I don't want to think about CFS anymore, and I won't have anything to add.

I also won't mention many details of my symptoms as I don't believe the exact symptoms are relevant to the cause of the illness or recovery from it. Suffice to say, I was most definitely unable to work or cook, and could only walk for approximately 5 minutes a day, on a good day.


Understanding
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From all my research, the explanation that made most sense to me, and fitted my experiences most closely was as follows.

I became ill because I was extremely stressed - possibly in conjunction to getting a bad virus. This combination of extreme stress, worrying worsening symptoms and incompetent doctors (leading to increased stress) led to a vicious circle whereby the increased levels of stress hormones led to my body being in a perpetual state of alert, thus worsening my symptoms. It was this permanent stress response, and the absence of the normal healing state the body requires, which led to my myriad of seemingly random symptoms.

I absolutely deny that any of this was "in my head". It was a neurological condition where the chemicals in my body got into the wrong balance, and my nervous system perhaps learnt the wrong unconscious response to situations. There were times when, despite my illness, I was relatively content, so I initially resisted this explanation but I now see that my body was unconciously in an underlying state of panic.

Again - it was most definitely not all in my head. However, we all know that the things we think about affect us physically: if you imagine tomorrow's job interview, you body starts to panic today. When this system goes badly wrong, as in CFS/ME/etc, it's no-longer enough to calm yourself down or be determined - you need to calm yourself down for a prolonged period (days/weeks) before you will see the benefit.

Recovery
--------

Relaxation / 'Meditation' / NLP

When I understood this, I resolved to listen to a relaxation tape every day. In my case, I listened to "Supreme Self Confidence" by Paul McKenna, which I happened to own from many years previously, and also followed the techniques described in the HeartMath book. I don't suppose the exact details are relevant. I spent about an hour and a half a day performing these relaxation exercises, and a variety of others. At the time, that wasn't a great time-commitment because I was unable to do much to occupy myself anyway. And it was definitely worth it.

Within three or four weeks I started to feel an inner-strength and calmness and an acceptance of my situation and calm belief that everything would be ok in some way.

I also used NLP-type techniques to visualise doing normal things and get my brain "used" to me being out and about and it being fine. I also used it to further relax myself. Rather than a chore, I actually managed to make this an uplifting experience and used similar techniques to help myself get to sleep - and on the occasions I still couldn't sleep, I didn't mind so much because I was enjoying my visualisations. I also, somewhat strangely perhaps, would frequently let out a sigh of relief and think (and really try to believe) "thank goodness that's over" - long before there was any sign at all that my symptoms were even reduced.

Not long after that I started to notice I could do a little more every day. When I went for a (very) short walk, I wasn't as stressed about the potentially disastrous consequences, and I noticed that I could walk a little further each day and feel ok when I got back. Two months afterwards I was able to move back into my own flat and look after myself, and a month later I am still recovering well. After a busy day trailing around London during the tube-strikes I've just come home and gone for a 4km run!


Brain-Tonic

I would also like to mention that I am now on Citalopram - an anti-depressant. An interesting thing I read about anti-depressants is that they should perhaps more accurately be referred to as "brain-tonics" as they help the entire nervous system and are certainly not useful for merely treating depression. Despite being somewhat prone to depression, I was amazed how well I kept my spirits up during my worst days and was certainly no more depressed than anyone who had had their life taken away would be - though there were of course many tears... So I wasn't taking the Citalopram for depression as such - but a number of doctors had told me that it seemed to help in some cases for unknown reasons.

Another point relating to the Citalopram was that I had to go on to my therapeutic dose (20mg) extremely gradually (phased in over 2 months), by cutting the tablets up with a knife. I'm not sure how a doctor would feel about this (my doctor reluctantly "allowed" me to), but I had previously failed to be able to handle the terrible side-effects of going straight onto 20mg of Fluoxetine (another anti-depressant). When the doctors repeatedly encouraged me to try again, and as I was at the end of my tether, I chose Citalopram as it was directed more at anxiety than depression, and because it came as a tablet rather than a capsule, thus enabling me to cut it up. I have since read that CFS/ME/etc sufferers do indeed often need to start medication extremely slowly as side-effects are worse than usual.

It's hard to say, but I think the Citalopram probably did play a role in calming me down and reducing my stress-levels, perhaps helping to get me to the point where I could at least listen to a relaxation tape. As I say, I wasn't really aware at the time just how stressed I was, though I was obviously aware I was pretty down. Some people advised me against using anti-depressants but I was desperate and they have helped me at other points in my life. I don't like taking them but I'll put up with it.


Lightning Process

A month after my recovery began I attended the Lightning Process course and it definitely helped speed up my recovery. I'm also happy to accept that if I hadn't already started recovering, the lightning process alone would probably have been enough.

Even without going on the lightning process course, which is fairly pricey at about £600 (though in my opinion worth it), the free explanations available at www.lighningprocess.com made great sense to me and helped me understand the illness, thus encouraging me to pursue the relaxation tape route, and making me determined to find the money to attend the course.

I really would strongly recommend this course. I read "Overcoming CFS with CBT" and was not at all impressed by their apparent lack of understanding of the illness or explanation of it. The Lightning Process though made perfect sense to me, and seems to be the way forward for the treatment of CFS/ME/etc. I have no affiliation with it however, and maintain that I initially triggered my own recovery as described above.


Other Notes
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Other things perhaps worth mentioning, for completeness, are:

- My recovery corresponded to a time of reflexology treatment. I (still) don't really believe in this stuff but I was desperate... and it's possible that just being pampered and receiving a nice foot massage every week helped reduce my stress levels.

- I also started taking Boots Everyday Energy and 100mg CoEnzyme Q10 tablets. This didn't really correspond particularly to my recovery but it may be worth mentioning.



I obviously can't predict how my health will be in future and it's already been a long and very hard journey, the extent of which a non-sufferer could never understand, but I really feel I understand more about the illness than all the doctors I talked to, and I will hopefully be able to use this knowledge to complete my full recovery soon and keep myself there.

Thanks and good luck,
Joe


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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.fibromyalgia-associationuk.org
Fibromyalgia Association UK
http://www.fibromyalgia-symptoms.org
This site includes a forum, as well as articles and treatments for Fibromyalgia.
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
http://www.ukfibromyalgia.com/


Comments
By Laura, 27-Jul-2010 12:13
great story, how long did it take for you to get better all together?x
By BCB, 30-Oct-2011 16:56
I had chronic fatigue in 2002. Recovered completely after about 12 months. I have been rarely ill over the last few years. However I have an extremely demanding job and have been suffering from stress for months. I had a minor virus in september this year and tried to continue working. I have now been off work for 7 weeks with fatigue, muscle pain, breathlessness etc. I am determined to get back to normal ASAP. I have promised myself I will never allow myself to be in this situation again. Stress is definetley the main contributer in this illness. Do not despair - you will get better.
By someone with M.E., 18-Nov-2011 11:29
The Lightening process can cure you for only £600. Yeah right, Course it can!!!
By BCB, 23-Nov-2011 13:11
Wondering how long it has taken Joe in total to get where he is with his recovery today.
By Saras, 23-Aug-2012 20:50
Thanks Jo I have been diagnosed with post viral fatigue after 2 weeks in hospital with a heavy virus which was never named. Ive been sick almost 3 months and its very up and down. Down days I dispair so reading your post help me realize I am not alone and gives me hope. Stay well Best of luck Saras
By Frustrated CFS Sufferer, 05-Feb-2013 04:36
Reading Joes story has given me hope. It was also really nice to read the positives. So many people write about their symptoms, which is handy for research, but not many are as straight to the point about how to get better. I'm still working on my recovery, and I hope that some of the notes shared by Joe will work for me also. Good luck to all of you... we CAN beat this!
By ME sufferers Mum, 05-Feb-2013 15:19
Joe's account has given me a lot of hope for my daughter who has been suffering with the same symptoms for about 3 years now. She has coped really well but two doses of flu have got her to a very low point so we're hoping by following Joe's pointers she will soon feel better.
By Post viral drained, 21-Feb-2013 03:12
Very interesting and hope you are still well. My own problems seem to stem from a similar route. 2007 I was made redundant after 17 years, from a job I enjoyed. A very stressful episode and during this time I had a terrible flu like illness that wiped me out for several days. A few months later I developed pins and needles/numbness in my hands and feet. My doctor believed it was due to stress. Since then many other stressful situations, I suffer with a myriad of symtoms. Thank you for taking the time to write.
By Gill, 28-Feb-2013 05:02
Hi. This is definitely the right way forward. If you dont want to pay a huge amount for the Lightening Process, I recommend the Gupta Prog at a fraction of the cost which is a similar process. check it out on Youtube first.
By rubbush, 12-Dec-2013 12:18
Lightining program gupta all moneyspinners. They dont work. If you get better from these therapies then you never actually had ME. You may have had issues with fatigue and would have got better over time. Makes me laugh all these people who think they have ME when really they are just fatigued. ME is a nasty neurological illness, chronic Fatigue is not.
By Tara S, 30-Jun-2014 19:09
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 F***ing 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. Have your doctors test you for EBV, HHV 6, CMV, Chlamydia Pneumonia, Lyme, et al they are very real physical illnesses that many times manifest themselves as psychological symptoms. Antidepressants at best help you sleep better, at worst cause horrible side effects and ultimately can make you worse. You wouldn't treat viral meningitis with antidepressants, would you?
By Lucy, 19-Aug-2014 22:29
I did the Lightning Process and did get alot better physically, as it reduces alot of emotional stress. Its a bit like a sticking plaster. However, this did not 'cure' the CFS/fibro illness itself, and LP is very hard to maintain realistically. A year or to later I was back to square 1, and worse, because I had moved out on the basis of the 'miraculous' recovery. I do not recommend LP for a long term treatment.
By Venky, 10-Oct-2014 04:51
I suffered from CFS dince past 5 years and I am on the road to recovery now . My symptoms were mainly blaoating , extremem brain fog , exhaustion, bloating ,heaviness in stomach after eating ,dark eye circles , disrupted sleep ,depression,anxiety (especially in the stomach) and the list goes on ... I did some research on the internet and soon found that this condition is mainly caused due to malfaction of the Sacral and Solar plexus chakras in our energy body . I practised chakra meditation and crystal and rudraksha healing .Crystal healing was done by placing a large rose quartz on the navel region accompanied with visualization . Also made a consious decision to cut down on any stress and be more stoic . I took ashwagandha along with several vitamin supplements All this finally has paid off for me and I am making steady progress .My most distressing symptom was the brain fog which is now totally gone . I hope to completly recover in couple of months .Good luck to all!
By ash123, 12-Jan-2015 13:01
Hi venky did you suffer from any ear pain with ur cfs? How was ur body with exersise?.
By Venky, 26-Mar-2015 02:35
Yes , I suffered from frequent ear infections,tinnitus ,headaches and post exercise malaise that lasted for a day or two depending on the intensity of the exercise .I must say that the chakra meditation is key to my recovery .
By Lee, 19-May-2015 05:28
Couldn't agree more. I'm in my 10th year of this terrible disease and have tried many different therapies. Most are money spinners. If you really have ME then the lightening process isn't going to work. ME is neurological illness and no matter how much psycho BS treatment you have is not going to make a difference to the underlying cause of ME. If your cured through the lightening process/reverse therapy then you never had ME in the first place.
By Lee, 19-May-2015 05:30
Ref comment: I agree with Rubbish comment
By Lee, 19-May-2015 05:31
I agree with Rubbush comment above (I hate predictive text)
By Lee, 19-May-2015 05:43
I agree with Rubbush comment above (I hate predictive text)
By Karen, may I use your wonderful words of euemnragc, 17-Oct-2015 14:31
Karen, may I use your wonderful words of euemnragcoent in my post tonight? I thought of just keeping how I feel to myself, but I don't think it is very honest of me to only write when I am up but to let people see that you can not live on the mountain top all the time-and when you are in the valley-there are answers and comfort for you from the Lord Himself, but also from encouragers like you, friends, your pastor. There is no reason to live constantly in the valley in the mirey clay too many wonderfful scriptures to read and claim.
By Cindy, Of course, I am fleartted. The reason I blo, 19-Oct-2015 19:29
Cindy, Of course, I am fleartted. The reason I blog is only to point people to Jesus and to the Comforter. Thank you for asking. God is using you mightily to bring comfort and His Gospel to others.Many blessings,Karen
By BS, 16-Dec-2015 15:25
This whole story is BS and 99% of posters on here are stupid and I wish they had a real case of CFS/ME. They're ovvi delusional.
By Karen, may I use your wonderful words of eneanroge, 23-Dec-2015 13:17
Karen, may I use your wonderful words of eneanrogemcut in my post tonight? I thought of just keeping how I feel to myself, but I don't think it is very honest of me to only write when I am up but to let people see that you can not live on the mountain top all the time-and when you are in the valley-there are answers and comfort for you from the Lord Himself, but also from encouragers like you, friends, your pastor. There is no reason to live constantly in the valley in the mirey clay too many wonderfful scriptures to read and claim.
By michael, 05-Mar-2016 04:53
Horses for courses methinks. If these illnesses are so non-specific, ie, a myriad of symptoms that vary between individuals without, still, an identified root cause, then so will recovery be the same. Our only course is to try, methodically, different treatments and go with what helps consistently. However, any prolonged negative physical or emotional stress will kill progress EVERY time and must be eliminated wherever possible. It's a long haul and everyone is different. There will never be a cure-all......
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This recovery story is in categories: Chronic Fatigue Syndrome, Fibromyalgia, ME (myalgic encephalitis), Post viral fatigue syndrome