Fibromyalgia Action UK


Hi my name is William I had a scan in October and was diagnosed with idiopathic fibrosis the doctor told me I had 1 year to 18 months depending on how fast its progressing, will be having another scan in March, however I feel fine I can walk long distances run for a bus climb 45 stairs to my flat a bit breathless but recover in about 60 seconds or a bit more, that,s what confuses me as I have read about others with this complaint who cant walk more than 20 yards, I,am 71 years old with no other health problems, so if someone could let me know anything about this condition I will be glad to hear from you,

Kindest regards


5 Replies

Hello William, sorry to here your news, but glad that you appear to be doing so well. I think you have come upon the wrong site somehow, this is for fibromyalgia, which although very painful and debilitating as you have read, it is not life threatening. Good luck with your quest for information and i hope life carries on being good for you,

All the best



Thank you for responding you are the first person to make contact so let me wish you a very happy new year, if you wish to keep in touch with me just say the word ,

Thank you Shazzy

Kindest regards



Hi William, me again, just found a site called Breathing Matters, has information that could be of use to you,

All the best,



Hello William, just thought I would throw my tuppence worth in and hopefully it will make sense.

You seem like an optimistic guy who is taking things in his stride.

I always think we should hear what the Dr says and then just get on with our lives, we each live until we die and no Dr can predict how each will fare with a given condition. My Dad was diagnosed with Small Cell Lung Cancer and they said 3 to 6 mths. He refused any treatment and just got antibiotics when he got a chest infection and steroids if he needed. He didn't fuss and 4 years later died,, the Dr said he had never seen anyone go on much longer than about 9 mths with small cell.

I believe our fear and belief can have a greater impact on our health than ever credited or imagined,, and often it is our own belief or fear that kills us or allows us another day, year, decade.

I wish you well and every contentment in the coming year.

William please feel free to drop in anytime I know you don't have fibro but that doesn't matter there are some great people in here and you will always be welcome here, we can never have to many friends in this life.

Best Wishes, Ray

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Hi willcam

I am so sorry to read that you are suffering with idiopathic fibrosis, and I have given you some details below:

The current theory is that IPF is triggered when cells that line the lung alveoli (air sacs) become damaged by exposure to one of several substances or viruses. The damaged cells try to repair themselves but the process becomes uncontrolled, resulting in thickening and scarring (fibrosis) of the alveoli and surrounding lung tissue. The amount of oxygen that can pass from the lungs into the blood is then significantly reduced.


A number of factors have been suggested as possible triggers for the initial damage to the cells lining the alveoli. Most experts agree that the two most significant risk factors are: being a smoker or having smoked in the past occupational exposure to certain types of dust – jobs that involve working with wood, metal, textile, stone, cattle or farming may increase the risk of IPF

Other possible risk factors include:

viral infections – such as the Epstein-Barr virus or hepatitis C, gastro-oesophageal reflux disease (GORD) (where the acid from your stomach rises back up into your throat) – this may be accidentally inhaled into the lungs, causing damage to the alveoli, chronic aspiration – where food, drink or saliva enter the lungs and is not coughed back up, often due to a related condition environmental pollutants or dust genetic tendency – the condition appears to run in some families but this only seems to be the case in around 5% of people with IPF.

I have pasted you a link to the NHS Choices cache on the subject:

You may be better off going on the British Lung Foundation Forum to get further information, I have pasted you a link to them below:

I want to wish you all the best of luck with finding the answers that you so desperately desire and deserve.

All my hopes and dreams for you


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