[Christine Bruyere]

I have had Fibromyalgia for over 20 years and IPF for 10 years – diagnosed March 2008.  My mom and I were diagnosed about the same time and she passed away six years ago on June 9.  My PF was considered stable and of no concern for a few years.  I know that I am going somewhat off topic here and delving into more symptoms in this text than just pain.  However it ties in with the changes in the body that lack of oxygen creates aside from pain.  My pain has increased and has also changed or rather, different types of pain have started up.

The IPF seemed stable for a few years and three years ago I noticed a change but not to such an extent that it changed my life much.   The Fibro had already done that for me years before! One of the changes was when I would be exerting myself – house work, shower, climbing stairs – I would have coughing fits.  When I would feel like I needed air  and would step outside for the fresh air – it made no difference. I developed bone spurs and arthritis in my feet so I could not bear to put my feet down on the floor.  I started taking K2 and this helped so after a few months I could walk again.  A the time, I never connected this to the IPF getting worse but since doing research, of course the lack of oxygen affects all parts of the body.  I also have the clubbing of the finger and toe nails.

One year ago this month I had my first major exacerbation, caused by a trial use of a CPAP machine.  I will never ever advocate the use of that machine for anyone with IPF!   Seeing my lung specialist after that and having a the first CT scan in 7 years – it showed a lot of increase in the fibrosis. Since that exacerbation, my life has changed drastically.    The lack of oxygen has caused my skin to dry and thin out and be very crepey – I am 63 and my hands look 83; I have lots of the brown spots (sometimes called age or sun spots) and skin tags; My body temperature changed.  Where I used to not be able to stand the cold and my hands and feet were often cold and I had to have lots of blankets on at night, I started being hot and not wanting blankets on.  My hands and feet are warm. (those are not changes I am unhappy about.)  Exhertion causes me to have coughing fits;  What I had thought was the Fibro getting worse I am now seeing that perhaps it is the same pain that others are feeling due to the lack of oxygen.  Although, that lack would of course increase the fibro pain as the nerve centre is changed in its function due to insufficient oxygen.  I have sharp pain down the backs of my legs.  My feet have sharp pains on the sides and the top – feels like in the skin.  I liken it to the diabetic nerve pain although I am not diabetic but it was not the type of pain that fibro gives me.

My Fibro fog (unclear thinking) and memory has deteriorated drastically along with my Apptiude.  I am having to give up my bookkeeping clients as it is too much to solve small problems etc.  My head feels dehydrated – best I can say to explain the feeling  – and achy and heavy; I get a bit tongue tied with words on occasion and of course my memory is shot.

I do take Ofev since last November but is wreaking havoc with my stomach, intestines and BMs so am thinking of stopping that soon.  I want quality of life over quantity. I have muscle ticks which I believe is a symptom of lack of magnesium and so I take magnesium and that helps a lot to not have the ticks and lessens the pain.  I do take Melatonin and Tylenol at night.  I have a sample bottle of the CBD and just started trying that – a half dropper a day.  Dont notice much with that so may increase it to twice a day.

I am just starting the process to see if I qualify for a transplant – I have an initial go ahead and will be given a program in May to start on before being listed.  I would like to hear from anyone else with Fibromyagia, especially any that have had the lung transplant.  It will help me decide if I want to go through a transplant or not.  If the Fibro gets worse or the pain does not lessen afterwards I think I will not.