Diagnosed with PMR January 2015 although highly likely developed March/April 2014. Suspected GCA Sept 2015 and negative histology to temporal artery biopsy.
Have been wanting to share my good news since using CPAP machine (continuous positive airway pressure) every night since being diagnosed with moderate sleep apnoea early November 2015.
Whilst I have had a sneaky suspicion my breathing has been not right some 30 or so years, was shocked to learn after completing a sleep trial late October 2015 that I stopped breathing for 10 seconds x 150 times during the night = 18 times per hour. Classified as moderate sleep apnoea.
I had complained to my GP (of 25 years or more) 7 or 8 years ago about my sometimes difficult breathing mainly at end of day - "take up singing" he said!
So I did for a time, loved every minute of it.
Changed GP's (closer to my home) & complained last year & again this year that I had a feeling that I could stop breathing but didn't know why??
She did not ask any more questions other than suggested anxiety.
I told her I was not anxious but not being able to breathe properly did make me somewhat naturally a bit anxious.
Was asthmatic as a child & had genetic atrial septal defect (hole in heart) - I often blamed this condition.
Hole closed successfully 1988 age 34. Electrical circuitry defective but OK. Have hypothyroid & take Synthyroid 50mcg daily.
Complained to my Rhumy Spec this year about my breathing, again mainly at end of day..... no response here either.
I had a gut level feeling to want investigate further, so took myself off to the Sleep Clinic which did not require referral - I usually leave not stone unturned to find answers & wish I had done this years ago.
I feel an immense sense of deep disappointment that I have slipped through the net of 3 medically trained professional folk, (2 GP'S & Rheuym) with not one of them pressing for further clues.
I have wondered how much this sleep apnoea has contributed to my PMR after reading a variety of books from my library.
To those who snore & do not know what happens when some of us stop breathing, worth researching a little further.
Whilst it damages a host of areas to our body, the blood vessels suffer as do the adrenal glands with the release of more cortisol each time we have an apnoea. I was speechless when told this.
I am not over weight, do not drink nor smoke - this is genetic I'm told (my late Father snored & held his breath) I thought this was normal.
Post menopausal women more likely to suffer from this condition.
I fit within the 20% of the population according to statistics.
The good news is that my heart is quieter, my blood pressure is not spiking like it was.
Colour has returned to my face & legs, I do not wake up every morning with a headache, I use the bathroom once a night, I sleep deeper through the night (absolutely amazing), my scar is finally healing with 2 small scabs remaining from temple biopsy surgery early September.
My mild depression has lifted, my nightmares gone (had these often at least 30 years), feel more in control of life without wanting to burst into tears.
My memory is 95% better, my confidence has blossomed & believe this is an answer to long held prayers on my behalf.
Few teething issues with adjusting to silicone masks, plus aggravation to my sinus's, but thus far a wonderful work in progress, my body is finally healing after so long. I am so grateful beyond words.
Oh just as important to report.... my very slow reduction of hydrocortisone is progressing favourably. I have had a return of a few aches & evidence of arthritis (osteo) in fingers, hands & toes.
The hydrocortisone level now is equivalent to 2.5mg of Pred.
Will stay at this level until aches and pains subside.
Abundant blessings to you all & a "Happy, hopefully healthier, New Year" to all.
Mary Beth (NZ)