From hero to zero
Hi, Diagnosed after 18 months with CFS/ME. Still not able to run, I can mtb small distances and am only able to work part time.
May I ask how did yours start?
I have heard many recovery stories so fingers crossed for us both!!
My ex suffers from it. I think it was trigggered by him trying to do too much. Stressful job working long hours, coupled with training for regular marathons. He never had time to rest and relax and his body is now paying him back for the abuse it suffered over a number of years.He is getting better slowly... very slowly. I feel he could recover quicker if he actually addressed the problem of doing too much rather than thinking it will go away of its own accord eventually. For a couple of years he was unable to run more than a mile, and that was on a very good day. On a bad day he couldn't walk 100m and slept for about 23 hours a day.He is now back at work and coping with life, but still unable to run more than 5 miles and certainly not every day as he used to be able to.
I'm suffering with calf muscle twitching and leg pain and cant run as I used to I managed a 2.5 mile run earlier in the week and my muscles was really shaking after and I could not do anything the for rest of the week. I was told to stop taking my statin and have been diagnosed with iron deficiency and have been on tablets for a month but the symptoms are not really going. I am interested to hear about doing too much as prior to this I was increasing my running and was going through a lot of stress and sometimes wonder if I have overdone things?
I can really empathise with what you're going through and I belive keeping positive will help immensely. What are you doing to recover?
What are you doing to recover
I haven't been diagnosed but I have had fatigue now for just over 3 years. I've seen a couple of consultants who gave me a thorough checking over for the problems that interested them but as I hadn't got one of the illnesses on their checklists they weren't interested. I also don't fancy CBT - I don't want to learn to cope with the symptoms, I want to get better! I've been seeing a nutritionist who specialises in adrenal fatigue and I do feel a lot better but still not able to run or do any regular exercise.
I've taken loads of anti-bacterials for a gut bacterial overgrowth and probiotics to replace the unwanted bacteria as it dies off. The stress on my adrenals and immune system combined with probable overtraining and stress at work is what I think triggered this all off. I first noticed an increase in my resting HR a few weeks before the fatigue hit and I went from around 50 miles a week to nothing! I've had one good period when I managed to get back into it but the HR jumped again and gradually the exercise dropped off again. At the moment I'm still trying to judge how much is a safe amount to do - pilates is too much, I reckon about 40 mins brisk walking 4 or 5 times a week whilst working is probably about right. But it is important to take into account all the other things you do as it all takes it's toll. I keep having to take breaks from walking for a week or 2 as it all gets too much.
Good sleep I think is critical, I take a big dose of magnesium before bed which seems to help. Trying to relax and de-stress is also a must - tricky when you have to work but important to work on. Plenty of healthy food and a minimum of alcohol, caffeine and other stimulants. I also keep a close eye on my RHR when I wake - it's been elevated for over 18 months now but it does seem to be coming down gradually. Don't let family/friends push you into doing things you shouldn't - it's great to go out for a meal etc but it can have consequences - learn your limits! People often don't really understand what you are going through and think you should push yourself or snap out of it - if only it were possible! And those who mean well but think you are depressed!
I think it is definitely worth speaking with someone who can look at you as a whole and see if there is an otherwise unlinked cause or major contributor. The right blend of supplements could make a real difference - not a cure but to support some of your body's systems that may be stressed. For instance, I take licorice root and alpha lipoic acid for my adrenals and my immune sytem plus I took an adrenal stress test which identified issues. Also a body temperature test which has highlighted further issues (I have a very low temperature) which I have taken action with. Simple stuff but things you can't know yourself.
This can be a very long road to recovery and I must say on occasion it drives me to despair - running really was my only hobby so it has been really tough at times. But with some good advice and some real patience it can be beaten. Sorry if this was a bit rambling, it was but I thought it better to get it all down in case something was useful!
I also don't fancy CBT - I don't want to learn to cope with the symptoms, I want to get better! How often have I said that!
If you go to many forums lots of people with CFS/ME have tried all sorts of therapies, suppliments etc but as no-one has exactly the same symptoms no-one can conclude to anything that really would help everyone with this crappy illness. Pacing is the thing that seems to be pushed but in real life not everyone can do pacing effectively.
http://www.sheffieldmegroup.co.uk/ this is really good for most questions/answers.
I cannot drink alcohol or drink coffee, it makes me so much worse that it's just not worth it.
Grumlethegoat - I don't believe in "CFS/ME" as a specific illness and include "overtraining syndrome" in that - they are just convenient names for vaguely similar sets of symptoms of unknown cause. Hence what you say. Pacing just gives your body the chance to recover by not overdoing it.
Do you know what caused your problems? Lyme disease is a possibility for some as it is thought to be a lot more widespread and easy to catch than the NHS currently acknowledges. Particularly given that us runners are often out in places in shorts where the ticks are hiding.. Another is like me with the poor gut bacteria - tackling that definitely is working but as I said before, not a cure but in removing a stressor that is pushing my systems too far.
In what way does alcohol and caffeine cause you bother? That could be a sign that your gut bacteria is not right. A major trauma in the past, a significant stomach related illness (I had a nasty bout of noro virus which was probably the starting point) or a dose of antibiotics could all be the catalyst for your gut bacteria going out of balance. Sugars (all types including those in carbs) are the food of the bad bacteria so alcohol intolerance may be a symptom of this.
Maybe something here strikes a chord with you? I hope it helps, this is a rotten illness!
I agree that everyone has a slightly different form of the illness and that it is probably a whole range of illnesses lumped into one category to make it easier for GPs to diagnose it and treat it.
Don't ignore any potential depression symptoms and refuse treatment. It is common with any long term illness to have depression as a side effect caused by the inability to have the control over your life that you wish. My ex suffered badly with depression and it made his ME/CFS symptoms worse as the depression caused him to be confused and not think things through logically or rationally. For example, when he went through a phase of sleeping all day he wasn't awake enough to be able to eat, so he could go the best part of a week with almost no food or liquid. Then when he did wake up he felt so much better than he wanted to get on with life again, and would attempt to go out for a 10 mile run. It isn't rocket science that you are going to struggle to run when you haven't eaten for a week but every time he failed to see it until he limped home after burning out in less than a mile.
The therapy he had helped him to see when the depression was getting too much and to ask for help. It also helped him to realise that sometimes he should listen to those around him as they might be in a better position to see things how they are.
Therapy didn't help him with the ME but it was never intended to. However it did greatly improve his quality of life and gave him the space to be able to concentrate on fighting the ME rather than trying to fight ME and depression at the same time.
Peter, I agree CFS is a banding of unknown illness. my symptoms have reduced significantly but still have them. I walked my first mile in 3 years which is my first road to recvery. I became obessesed with finding out what was wrong and was financially a waste of time. As everyones sypmtoms are different I would ignore the consultants as you will know more about your own tolerances than them. Nowadays symptoms are a normality and passed caring that they are there. With this out of mind and ensuring my work and home life have no stresses and regular eating this has made me the most improvement. I believe I caught mine from Lymes dissease but it is very hard to pin down and comes up with false results. I reckon it will be another 2 years before I am running. I think the problem with us runners is we lose the ability to listen to our bodies and pain barriers. I would literally train until I dropped. Never again.... Good luck to everyone. Keep the faith
Sorry what's CFS?
Sorry Grumblegoat mine started finding it harder to get the same results. I had constant illnesses but carried on training. I had a bicycle accident cracked my rib and my leg was septic from crash and was on antibiotics but foolishly continued to train.I was stressed at work but knew I was weeks away from the race with deterioting 40 training results. I went out for a fast 60 mile ride and had a sudden loss of energy at 40 mile. I managed to get home in a lot of pain. I slept on my knees cos I couldnt straighten my body. the next day my life had changed completly.
Hi Karen, Chronic Fatigue Syndrome / M.E comes
SB7 I am doing the least physically possible physicaly and mentaly as well as no caffiene, alcohol, aspartime, milk, any tablets and lots of water. too many people can offer fixes, I tried most and failed. If you sensitive to sound and movement part of your tiredness can be down to too much adrenaline. Is so no computers, action films, situations at work and driving helps to reduce this but then everyone is different.For all we are the hardest hit group as we are used to fitness then to zero, its a bigger impact to someone who does not train.
I think I got it!
Phil - sorry to hear how bad your symptoms are. Has Lyme disease been diagnosed or are you still chasing that? This was an interesting story on the BBC - http://www.bbc.co.uk/news/health-22468181 - there are some much better tests available now. Might be worth your while trying to get them done and if positive you can look to get it treated.
Supercaz - thanks for your input - your ex sounds in a bad way too. Any improvement? I'm definitely not clinically depressed but pretty pissed off! But I do admit to not always thinking things through before doing activities. But I am learning and do keep cutting it back - I think I've found a happy medium now. Thing is when I'm on holiday I can walk for miles over hills with very little problem (other than my dwindling fitness) but I put that down to better sleep (I work shifts) and less additional stress (ie not at work or facing bills in the post!).
SB67 - sorry to hear of your problems. Exercise is definitely good at relieving stress but of course you need to be careful not to overdo it. I'd say best to follow a structured plan if you're not sure as suitable breaks will be built in but to not worry about taking extra timeout when you need it. Get well soon!
Peter - We've just been on holiday and I was ill for the first three days but after that I was snorkling and walking and although I felt bloody awful at times it was nothing like how I am at home with stress of work etc
If I could do what Michael Crawford did http://www.dailymail.co.uk/femail/article-1362592/Michael-Crawford-reveals-personal-reason-s-stage.html#ixzz1FiLcNh4B would.
I do think that stress has a huge part to play within me/cfs, whether it's physical stress or mental.
Is GtG for short okay? I think stress is a vicious circle so it's definitely important to break it. That's why I'm hoping sorting my gut bacteria out will make a big difference as it was probably one of if not the main source of stress in my life. In the last few months I have (and others have mentioned) noticed a gradual improvement in how relaxed I am, especially at work. I'm less grumpy, more positive and swear a lot less! I'm hoping that this along with supplementary support for my various systems and by not overdoing the activities will eventually pay off. I keep revising the timescale but I'm sure it will work (I've got nothing else in the pipeline so I must commit to this).
I'd heard that about Michael Crawford before. In fact at one time my mum was telling me that I was ill for the same reason - sweating too much during running - having read that article. Quite how she knew how much I sweated I'm not so sure since she's never seen me run... I've also thought a good long rest away from it all would really help but financially I can't do it. But the next best is to rest up as much as I can, do as little as possible and take it one day at a time.
Phil Pain - You are right about being the hardest hit group, not exercising goes against everything I've ever believed in and although I always used to take rest days it is hard work not doing anything at all!! Good luck with your recovery
Have any of you guys heard of Mindfulness, it is a form of meditation that focuses on the here and now and not past or future, it is supposedly good for focusing attention and stress reduction. I suffer from a constantly chattering mind and mindfulness has helped me to focus on occasions. Just thought I'd share that.
I have a friend who swears by mindfulness as a way of coping with the things going on in her life.
My ex will never get better. He isn't prepared to do anything to help himself and seems to be in denial. He won't consider changing his lifestyle at all, reducing his hours at work (even temporarily), reducing his social commitments, trying different diets or any of the other things that may (or may not) help. He is in a very low place and only he can pull himself out of it, but he is unwilling to give it a go.
I would love to see him improve and live the life that he wants, but I made myself very ill attempting to help and support someone who fought me every step of the way and expected me to come up with a miracle cure.
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