Cycling with CFS/ME/Fibromyalgia

[Claireysmurf]

In 2006 I had a woolly "diagnosis" of Chronic Fatigue Syndrome/ME/Fibromyalgia. Basically these seem to be a diagnosis for lack of energy and general pains where no other conditions can be found (I had tests for Glandular Fever, AIDS/HIV, MS etc). I have always been sceptical that I have/have had one of these as I have mainly been fairly energetic, just running out of steam in fairly spectacular fashion at times.
I have been cycling again since February last year and feel I am doing well with it; I can manage 50+ miles fairly happily. However, my recovery time is very slow in that what seemed a reasonable ride will leave me not wanting to cycle for days afterwards and if I cycle over a number of days (e.g. commuting), I can only manage 150 miles or less in a week.
I would love to enter a LEJOG or similar for next year but am at a loss to know how to push my distances/stamina up. I must admit to not having spoken to the GP about it but suspect (based on previous experiences) that they will just say that I am unreasonable at 42 to expect to do such things.
Claire

[Si]

I was (loosely) diagnosed with GF followed by PVFS so I sympathise with you both on the effects of the illness and the difficulty with getting a proper diagnosis (I'm not criticising the medicos here - it just seems that it's not an easy one to handle).

Took me about a year before I was start 'training' properly again... although everyone I've spoken to with similar problems has found that it affected them in different ways so I guess that there are no hard and fast rules. The only thing that I would say is don't try to force it or over do it.....I know how much you want to get out there and be riding again but it's worth losing a year of proper rides now so that you can make a full recovery later.

[LollyKat]

What Si says - don't force things or you could make it worse. However, if you are carrying excess weight it would be a good idea to lose it gradually.

[Halla]

Hi Claire

Welcome to the club. I have had a diagnosis of Fibromyalgia. I have been on Levothyroxine 50mcg since last October and now have more energy most of the time. However the pain from the Fibromyalgia was not cured by this.

I now avoid caffeine, alchohol and foods where a significant ingredient is sugar, therefore not too many cakes. I do not eat any factory prepared food. I feel best when I eat salad, vegetables fish and white meat. I also eat only wholemeal bread which I make myself and wholemeal pasta and wholegrain rice.
I start each day with a bowl of porridge and decaf coffee. I try to drink only filtered water.

It is thought that there is a conection between many of these diseases and the thyroid gland. Having had Glandular Fever is thought to be a cause of many of these problems, as the Epstein Barr virus stays in the body for many years often in the thyroid. There is a link between these diseases and major problems such as Type 2 Diabetes, Heart Disease, Gall Stones, memory loss and Depression. Having had Glandular fever can cause you to have an enlarged spleen, which has its own problems.

Unfortunately these diseases which may be connected with the Thyroid are not well supported by the NHS, they rely too much on blood tests and not enough on the patients well being. The blood test parameters set by the NHS for an underactive Thyroid are too wide and they tell you you are normal when you are clearly quite unwell.

A book worth reading is Your Thyroid and how to keep it healthy by Dr Barry Durrant-Peatfield. He covers the subject very widely.

The good news is that regular excercise is recommended as part of ones lifestyle to mitigate against the effects of the disease. Cycling being excellent. I do not cycle as much as I should but find that long rides have been better since I have been on the Thyroxine. The book referred to above also recommends Reflexology to help the patient. I found this to be beneficial.

Good luck, I hope you soon feel much better.

Regards Andy

[southamptonadi]

Hello,

There seems to be a recuring theme here, i was (loosly) diagnosed with CFS, im not sure if my doctor did it to get rid of me or not after asking him every month why i am so tired, i can i not wake up feeling refreshed. But he did, and i do struggle some days but mostly and i think its down to my personal nature that i do work really hard and just keep going and i refuse to have a day off sick(have not had one in 11 years). i cycle quite a lot and in a week saturday im starting my end to end. it has not affected my cycling YET.

I find im at my best when i have a regular sleeping pattern (which when im off cycling i do). i have had no support from the nhs at all, every blood test comes back fine, even though my body has been telling me for years that there is something wrong.

its a horrible thing to have and i feel for you, because i work shifts, i find that it does not matter when i go to bed because i allways wake up the same, late, knackered and very tired, it only improves when im not at work and as i say i get a regular sleeping pattern.

ive not bothered getting advice from the gp but im going to do it in 12 days, camping averaging about 70 miles a day, but i will have my best mate with me to give me support and encouragment.

Please please do an end to end you can do it in three weeks if you want just have a day off whenever you feel bad.

Just re reading the post and the days when i really push my self like put in a sixteen hour shift or just work really hard I am fine for a few days but it hits me really bad 2,3 or even 4 days after.

Good luck there is loads of info on the web but dont let it stop you cycling.

Adi

[jodee1kenobi]

Hi, I don't suffer with any of the above conditions, but I have suffered with depression and allergies in the past. Like yourselves, the doctor was quick to just either prescribe medication or take blood, without looking elsewhere.

For me, going to see a Kinesiologist was the best thing I ever did. They look for what won't necessarily be found with a blood test. I.E Viruses and parasites in the body. It was quite amazing what I tested positive for and wouldn't ever have known unless I had gone to the Kinesiologist.
I know some people are sceptical about 'alternative' medicine etc...which is why rather than me try to explain what is involved in a visit, you google Kinesiology.

I got so fed up of being fobbed off that despite being sceptical I did go and visit a lovely lady kinesiologist. The results were brilliant I haven't looked back!

Anything's worth a try

[Gearoidmuar]

Can cycle 50 miles no problem?
How fast?

That's the first question I'd ask. People who are not good athletes (i.e. most of us) can be knackered by what wouldn't tire a good athlete. Many people feel that they must be pushing it or they're not cycling.
If you're doing 150 mpw and a lot of this is over you're anaerobic threshold, where it may be on hills, that is VERY tiring. Ideally, exercise should be pulse-related.

[Claireysmurf]

Funny you should mention pulse rate - my cycling buddy managed a few of the hills that I pulled up on yesterday and he hit 99% of maximum heart rate (in his case 183bpm). We neither of us had a good cycling day as both felt tired; the headwinds and hayfever certainly didn't help me.
I must remember to wear my heart rate monitor but normally if i do 150 miles in a week it is mainly commuting (maybe 80 miles over 6 days) with a couple of leisure rides (remaining 70 miles). About 20% of the commuting I would count as quick (maybe managing 20 mph for a mile or two at a time).
Typically my speeds would probably be 14mph on the flat but on my last long solo ride I noticed I did manage a 1:56 mile where there was a biggish downhill section.