• Thanks for this Jack, I hate taking tablets but as this is a naturally produced thing that the body makes I can only surmise that with our diseases that our bodies are sadly lacking in this, hence the cramps,  am going to try as my cramps like yours are getting dangerous, especially when driving, looked it up and can get it in Europe

    Hi Nan

    Yup…[Read more]

  • Hi World


    Pulmonology Professor was a s nice a pie, just when I was ready for a fight too, he said I have a right to decide what I will and wont take or do, it is my life, complete turn around from the last appointment !!! basically he thinks I am shortening it but I would rather shorten  it by a few months that feel ill on tablets that will,…[Read more]

  • Nan and Profile picture of Susan HowittSusan Howitt are now friends 1 week, 4 days ago

  • Hi Judy

    Glad you feel better knowing you are not alone, does seem that forms of Fibrosis and chest cramping go together, no idea why this is though. I also do not take tablets just a personal choice though I am a bit of a wimp.  My daughter has a high pain tolerance and that doesn’t always do her any favours.

  • OOh no Kathy, keeping my neighbour all to myself  lol.  I have always used everything as natural as possible and Stella shuts the door and opens the window even so, she really does take awfully good care not to do anything that will cause me trouble.

    My lungs are going stiff and that is the problem for me re bending, it cuts off all oxygen and I…[Read more]

  • Hi Fred,

    Yes also on Omeprazole for severe GERD, still get severe chest cramping, sorry but can’t imagine being able to eat mustard, my throat is very sensitive due to coughing.  Though the deep breathing, almost an instinctive reaction I find, and water do help

    Hi Karen, yes mostly right side chest and right foot, wonder why this is !.  I h…[Read more]

  • Hi Rob  I also take Vit C daily and prescribed huge dose of Vit D monthly plus a daily doses of  Echinacea, (disgusting taste) but really does seem to work, just fought off a nasty flu type virus before it really took hold.  Must admit I am paranoid about anything with the word zinc, that is what poisoned me (zinc chloride) at work so stupid as it…[Read more]

  • Thank you Nan, you have no idea how your answer has helped me.   I was thinking it was just me and was having to battle foreign ideas alone but your answer has helped me see that I am not that inflexible and that it does happen to others. Being alone in a foreign country with a deadly and rare disease  is not easy. Luckily I am made of fairly st…[Read more]

  • Hi Nan My cramps are mostly on my right side too, hate the ones in the big back muscle leaves me breathless, though I do get all over chest ones, few in my legs but my toes cramp often, right side again one seems permanently in cramp !!!

    Yep the professor really frustrates me, not supposed to question some one with such standing !!!  I will…[Read more]

  • Hi Charlene   Wish could skip the professor but to get to the one I want I have to be released by the professor first so flaunting French protocol and not cowtowing to him might just work, I want him to wash his hands of me so I can go to her as he cannot just leave me high and dry. Would be labelled as a difficult patient, I’m not it is just t…[Read more]

  • Hi Charlene,

    Already take prescribed dose 10,000 ???? per month of Vit D as I am not very good at manufacturing it.

    Got an appointment with the professor on the 3rd of Feb but I am fast losing confidence in him as he never

    listens and treats me as if I know nothing, tis true though that the French never ever question their doctors or any one…[Read more]

  • Hello All


    Has any one got any tips or found any solutions re frequent chest cramps, getting far too frequent now, I have tried magnesium supplements, no difference.  Got rather dangerous yesterday when I had to drive a courtesy car as mine was in the garage, was on the main road (driving for about a minute) needed to turn and as I turned the…[Read more]

  • Hi


    I think you are right as after eating oxygen is required for digestion and if you are not on supplemental oxygen this could be your answer.

    You are so right about people and colds etc, have the same problem,  makes me so mad when they say *but it is just a simple cold* for them maybe but for me it is a matter of life and death  Had some o…[Read more]

  • Best of luck Charlene hope your symptoms don’t get worse, mine did a bit though not as bad as they could have been, terrible cough has stopped me sleeping the last couple of days, can’t lie down, checked with doctor, nothing in my lungs, so that is good, she gave me antibiotics to hopefully catch any secondary infections even though what I have is…[Read more]

  • Only the cards got put on the side board, no sign of anything else here, went to daughters for Christmas dinner and there are no other relatives over here so I really don’t have to make a show.


    I don’t think you are being a Grinch, if it exhaust you then it really is no fun and to look forward with dread for Christmas is not good for the moral…[Read more]

  • Hi Charlene

    Hope you are continuing to recover.  The nasty virus tried to get me over the last couple of days,  had the start of it, sore throat, hot and cold shivers, achy limbs, headache etc but doubled my dose of steroids and religiously took the Echinacea drops and today I feel fine,  every one else that has had it has been in bed, gee I am…[Read more]

  • So pleased you got out Malcolm, do hope that your lungs recover, can’t imagine how you suffered.  Hope when you can go back home that everything is OK. My brother is in the Victoria area and the fires, years ago, came within 100m of his house, too, I heard afterwards and he didn’t care, he had just lost his wife to cancer,  the phones went out, s…[Read more]

  • Sorry to hear that you have been under the weather Charlene, please do take the drops, they are foul though, really foul but needs must

    Sorry that you have had someone else tell you, you need oxygen Nan, must have been distressing but when you need it you need it, the need is to protect your other organs, it wont necessarily (suppose it depends…[Read more]

  • Hi Charlene    I was recommended to take (by a pharmacist) Echinacea drops, an immunity booster, they taste absolutely foul, but I must say they seem to be working, been on them for three months now and been in direct contact several times with the nasty chest virus that is around and also coughs and colds and touch wood, so far I haven’t ca…[Read more]

  • Hi Nan


    Hope the docs take notice of your charts, mine did and wanted me hospitalised that day !!

    Left hospital a week late on O2, must say I was very very disappointed to find that even on 5ltspm I still couldn’t go up an incline and still felt breathless all the time, is it me, or is this normal, don’t know.  Took reading on my daily dog…[Read more]

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