M.E.

[Muguruki]

Is anyone out there suffering with or has suffered from M.E. / chronic fatigue? I've suffered for years now and only in the last few years been able to get back on my bike. I'm just going through a bad patch again. I've probably been doing too much but would be interested to talk to other cyclist who have or may have had similar problems.

 

[ColinJ]

I have started getting very tired now that I am back on Warfarin again. I felt like this last year when I was on it. I've been reading that some people are helped by vitamin B supplements so I have just ordered some B Complex pills to see if they help. It might be worth you giving them a go too?

 

[BigGee]

I was diagnosed with ME/Chronic fatigue about 3 years following a viral illness that would not go away.

Everyone's experience of this condition is different and I am very aware that mine was very much at the milder end of the spectrum. I managed to get myself back to work after about a month but for a long time work was just about all I could manage and cycling very much had to take a back seat. I set myself backwards on more than a few occasions by trying to do to much including one major relapse and I ended up off the bike for best part of six months.

Learning to stop fighting it was part of the cure for me. The previous year I had done a 1000 mile JOGLE in 11 days, so getting back to viewing a five mile ride as a challenge again was not something that was easy for me but I did eventually sus out that you have to start again very slowly and just build up very gradually. You have to learn to listen to and trust your body, if it is telling you that it is tired then learn not to push it.

Have you had a formal diagnosis? There are specialist clinics around and they can be very useful. I went to the one at St Barts. They made the formal diagnosis for me and provided me with reassurance that I was likely to improve, which I did. Looking at the internet on this subject can be all doom and gloom and it is a good thing to get some honest professional advice on the subject and also to be reassured that it was not all in the mind!

Things that helped me were learning to take it easy and rest when I needed to. Stopping drinking alcohol, which improved my sleep pattern. 30 years of shift work had trashed my sleeping routine and is likely to have been a big part of my problem. Stopping drinking tea and coffee in the evening as well. None of these things are rocket science but they all helped. I also now take a small dose of a drug called amitriptyline at night which also helps me sleep better. Despite still doing regular night shifts I now sleep well enough to cope.

Cycling wise I am back to me old level more or less and can still bang out some energetic rides, including regular overnight ones. I still get tired sometimes, but I am fifty next year so that may also be related to that. I listen when the body is really telling me not to do something particularly following a set of night shifts at work. A proper rest and I am then usually good to go properly the next day.

It is a condition that made me change my lifestyle a fair bit but some of those thing were definitely for the better and hopefully in the long term may even help me.

Good luck with things

 

[Muguruki]

Yeah I was diagnosed 13 years ago and had 10 years off the bike. I tried B vitamins, spent a lot of money on accupuncture, tried all sorts of diets and "remedies" but nothing seemed to work. I tried getting back into work about 18 months ago but only lasted 6 weeks before it kicked in again big style. Got over that blip and was really good most of last year managed to do 4,500 miles on my bike last year and then just when I thought I was back to normal I had another "blip" in the last couple of weeks.

After all these years it still baffles me. My problem is I never know when I've done too much till a day or so after. Sometimes really cold feet is a warning sign that things are going to go pear shaped. My G.P. is cool though coz he suffers from something similar after he came down with shingles. There have been times over the years that he has looked worse than me.

It may well have been the shift work that strated it off with me I was doing 70 hours a week night shift in Saudi Arabia and six weeks after that it kicked in. Zopiclone is what I have been using to sleep but that only gives me a stoned kind of sleep so only take it if things are getting real bad.

I reached fifty 3 weeks ago and yeah other things associated with being and old fart kick in don't they. Saying all that I'm a lot better with this glorious weather.

 

[BigGee]

I think it is hard to underestimate how much damage shift work can do to you over the years. I am a nurse and have been doing shifts for thirty odd years now. You take it in your stride when you are younger. I would think nothing of doing 14 straight night shifts or staying up all the next day after I used to finish my nights. Nowadays two or three is about my limit and I pretty much right off the day after I finish.

I just insidiously found that I got less and less sleep on nights as I got older. This coincided with other things going on in life, like the arrival of kids, which all subtract from the ability to sleep, night or day. When you start having sleep problems it transfers from day to night and you soon find you are not sleeping well at any time. The thing is you do get by. I would regularly go into work having had a couple of hours sleep followed by a couple of hours tossing and turning in bed. I used to say it was time spent horizontal that counted not necessarily the quality of the sleep but I have changed my opinion on that now that I am sleeping a bit better now. I certainly can tell the difference.

I think I touched on what helped me. A sympathetic GP was a very good start and the consultant I saw was very reassuring. The things that I did off my own back, in particular stopping drinking was very beneficial. In truth I have known since I was a lot younger that I did not sleep well when I had alcohol on board. That is actually conventional medical wisdom, though as with a lot of medicine, it is not an exact cause and effect and varies throughout your life. When I was younger it took a skin full of beer to have the effect but that changed through life to the point were I got the same effect from a couple of glasses of wine. It had to go and eventually I faced up to that. I like wine and beer but I like having a normal life and going cycling more. Nowadays I actually find it quite liberating and I don't miss it at all. I think we are all probably pressured into drinking more than we want/is good for us at times and I am glad that is no longer for me.

I take Amitriptyline to help me sleep at night which was recommended by my GP and endorsed by the consultant. This is an anti depressant, so has a little bit of a stigma, I certainly was not keen myself. But I was reassured by it being a very low dose, sub therapeutic for any treatment of depression. I never intended to stay on it but I still am. I have tried to stop it a few times but always seem to sleep worse again when I do so. It may be purely a placebo now, I would not discount that but for what it costs and as it seems to have very few side effects or toxicity being a very low dose I chose to run with it now. The only thing I find is that I am now just a bit more sluggish in the mornings now, whereas I was someone who could always jump out of bed in the morning no bother. That is definitely the lesser of two evils so I choose to live with that. Maybe you should have a chat with your GP about trying that. I don't think the medical evidence is overwhelming but anecdotally and I would consider myself as one of those cases, people do get some benefit.

I have not had a significant relapse for over two years now and really hope it has left me behind. I remain wary though and tend not to push myself through as I once would have done. I would not want to go through it again. Someone else at work is off with it now, following a bout of shingles as well. 4 months now and not a sign of her coming back, so I do fear for her. A hard working driven individual who very much meets the stereotype.

Good luck again.

 

[Muguruki]

ME is sneaky like that at targetting driven individuals.

Heard on the radio this morning that women shift workers have 80% more chance of having fertillity problems.

 

[BrumJim]

My wife had ME for many years, and at worst, was virtually bed-bound.

Things got so bad that we tried one of the therapies - Ashok Gupta's Amygdala Retraining Program. She is now free of ME, back to good health, and as a result, we have started a family.

There are plenty of therapies around, from GET, Pacing and CBT (from the NHS) to a number of individuals with self-developed therapies. However each is only as good as the practitioner and the commitment and suitability of the patient. GET, in particular, has a very bad press for making some patients worse.

If you need a chat, then I'd be happy to oblige.

 

[byegad]

I had it following a dose of the Epstein-Barr virus, no ide. I had 7 months off work in the mid 1980s and I suffered from recurring, but thankfully less severe and short lasting, bouts for about 15 years. Even now some 30 years on I get the odd 'off day' for no apparent reason. I have found not pushing myself on those days makes for quicker recovery, as in it goes away by the next day. Pushing through a bad day can lead to 2 - 4 more bad days in a row.
Your main problem is if you are ill and not doing too much you don't look particularly ill. The less charitable/ignorant in your circle will think you are swinging the lead. Ignore them and look after yourself.

 

[ColinJ]

I had forgotten this thread. I have been taking a daily Vitamin B complex supplement since I posted above and the fatigue has gone! That isn't proof of anything, but I think I will keep taking the supplement rather than stopping it to see if the fatigue comes back ...

 

[Hill Wimp]

I take B12 , Vit C and high strength Omega 3&6. If i happen to forget i can tell the difference the day after.

 

[Hill Wimp]

I was finally diagnosed in January after over a year of seeing the GP and having various tests.I'm still not totally sure what caused it but my job for the last 27 years has been very intensive, very irregular and long hours and after my last cycle tour in India over Xmas 2012 i ended up with a hideous respiratory virus.

Getting signed off work in December was a relief as i felt i could finally allow myself to be ill if that makes sense. I was told to rest which is not easy when you don't know whats wrong with you and you cannot even have a shower without having to go to bed for 3-4 hours afterwards. Once i had had the diagnosis though my mind felt more settled as i could start a pathway in my head back to full health.

I joined a weekly meditation session run by the local Buddhists group which has been my salvation in getting my head around it all. The practice of meditation and mindfulness really helped stop the world revolving around in my head and helped me free up space for me to work through what was happening.

I started very slow walks along the seafront twice a week just to get some fresh air in my lungs. This progressed to longer walks with my friend and her
dog at the weekends then longer walks on my own until finally i could start to contemplate getting on a bike again. I also got a Fitbit which was able to show me that despite the amount of hours i was in bed, sometime 2 or 3 times a day, my real sleep pattern was very poor. I could be in bed for 12hrs and think i was asleep but in reality i was only asleep 2hrs of that with the rest of the time very restless.

I started going back to work in March on 2 days for 4hrs at a time. I did have to drop to 1 day but that time was important as i got to keep up with my collegues, work and everything that goes on with a close knit team. I live nearly 2hrs away from my workplace so i am quite isolated from them. I was gradually trying to increase my hours to one full day in the hope that by the end of May i would be doing two full days and then building up from there to a full week over time.However a couple of weeks ago my occupational health told me i could not return to work until i could do 16hrs a week. TBH this has been a huge blow to me mentally. During my time off sick i have had acupuncture, joined meditation, yoga, pilates, and created my own Pacing system after researching the NHS one ( still waiting for my CF clinic appointment) including exercise. To be told basically that they don't want to know until i am at a certain level of fitness without considering the effect it may have on me i find astounding.

Anyway today i cycled 17 miles. I had not been on a bike since October but finally i felt, after a few smaller rides, that i could give it a go. Yes i'm knackered, yes i really ache, no i didn't sleep this afternoon when i really wanted to because i am hoping the fresh air and exrcise will help me sleep well tonight. I know that over the next couple of days i will pay for this but for me this is a grand step forward so long as i don't push it.

 

[ColinJ]

I'm sorry,but I can't take this "illness" seriously.
A slice of Munchausen and a gullible doctor who has no real clue make this an illness.
We all feel extremely tired sometimes,a lot of the time actually.
ADHD or Bipolar anyone ?

Well, I didn't see a doctor, and I didn't tell anybody about it either the times that I suffered from chronic fatigue so that's the attention-seeking and stupid doctor arguments laid to rest! (Or should that be stupid arguments about attention-seeking and doctors? )

I know what feeling extremely tired is like ...

I worked in a factory doing extremely heavy labouring work for 5 years, heaving several tens of tons of materials about by hand each day, usually working 6 days a week and with frequent half days on Sunday too.

I have also done several 140 mile bike rides involving riding across 12,000+ ft of steep Pennine hills each time.

The tiredness that I experienced from those activities was nothing like the chronic fatigue that appeared to strike from nowhere.

I walked back from university one evening, arriving at my flat at 6 pm. I felt tired so I dozed off for what I thought was a few moments on the sofa, only to open my eyes and discover that I had actually slept for 14 hours, fully dressed, and not having eaten anything before conking out. That fatigue lasted a couple of months.

I got it again years later. I went from energetically romping round hilly Pennine 100 mile bike routes to having to stop several times to rest carrying one carrier bag of shopping less than 400 yards.

I also experienced chronic fatigue after my near-fatal blood clots but I won't count that experience because I had been very ill and was on new medication so that might explain the problem then.

 

[Hill Wimp]

My wife had ME for many years, and at worst, was virtually bed-bound.

Things got so bad that we tried one of the therapies - Ashok Gupta's Amygdala Retraining Program. She is now free of ME, back to good health, and as a result, we have started a family.

There are plenty of therapies around, from GET, Pacing and CBT (from the NHS) to a number of individuals with self-developed therapies. However each is only as good as the practitioner and the commitment and suitability of the patient. GET, in particular, has a very bad press for making some patients worse.

If you need a chat, then I'd be happy to oblige.

I have had a look at Ashok Guptas website but i can't quite work out the treatment without signing up for the videos and DVDs. Can you give more details?

 

[BrumJim]

Basically its a bit of Neuro Linguistic Programming (I think). Identifying negative thought patterns and working through positive ones instead. A bit of meditation thrown in too for good measure.

It very much worked for my wife, but you need commitment and support to do it. We saw no changes for about three months, and repeating the same process for 20+ times a day for this long takes some sticking power. Eventually I started to see some changes, which gave her extra encouragement.

As I said, Mrs BrumJim was very ill (all but bed bound) and we were getting desperate. And Ashok seemed like such a nice bloke, we didn't mind giving it a punt.

 

[Hill Wimp]

Basically its a bit of Neuro Linguistic Programming (I think). Identifying negative thought patterns and working through positive ones instead. A bit of meditation thrown in too for good measure.

It very much worked for my wife, but you need commitment and support to do it. We saw no changes for about three months, and repeating the same process for 20+ times a day for this long takes some sticking power. Eventually I started to see some changes, which gave her extra encouragement.

As I said, Mrs BrumJim was very ill (all but bed bound) and we were getting desperate. And Ashok seemed like such a nice bloke, we didn't mind giving it a punt.

Thanks for that. I can well imagine that having this condition and being bed bound was so very very hard. December was a complete wipe out for me with more hours asleep than awake or unable to do the most basic things some days. I was so down i used to cry at not being able to get dressed after showering without having to sleep first.

I'm good at putting a game face on, i do a job that requires it above all else and i have been indoctrinated from birth that whatever happens you just get keep moving forward. This didn't help my illness for a very long time. I clearly worked through it when i was too ill so when i finally gave in and let it floor me i sunk. On the other hand this mental attitude has also helped me on the road to recovery but only, and i would underline this, only when i reached a certain point. No amount of talking processes would have worked initially. The physical damage was too great and i needed to stop the world, and get off and rest before my brain would accept anything else. By the sounds of it your wife reached her point of being able to accept a way forward and thats excellent.