~Update on PMR & newly diagnosed sleep apnoea~

[Megams]

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)

[olive2709]

Well done , onward and upward great when it all comes together.

[Megams in reply to olive2709]

Thank you Olive appreciate you feedback and still a work in progress which I count my blessings for daily.

Take good care in meantime.

[PMRpro Ambassador]

Another lady posted after being dx'd with sleep apnoea just before Christmas - she's waiting for her CPAP machine. You two should get together and swap experiences!

healthunlocked.com/pmrgcauk...

[Megams in reply to PMRpro]

Yes that would be wonderful - thank you for the link.

Have been offered by Fisher & Paykel Healthcare a one year free membership of the Sleep Apnoea Assoc. of NZ (SAANZ) & note in our NZ Herald 2 days ago that this company predicted to continue to do well in stock market - absolutely not surprised with sleep apnoea on increase and many people walking around without knowing it.

Happy "New Year" and thank you for your wonderful support & helpful advice this year - you are an angel is disguise.

[HeronNS]

Very interesting. Thank you for sharing. Best wishes for continued improving health in the New Year!

[Megams in reply to HeronNS]

Thank you Heron appreciate your comments - felt I had written a chapter as it was, but needed to get most important info reported.

And warm wonderful "New Year greetings to you and yours" for continued renewed health for 2016.

[lwhynda]

PMRPro pointed out to me your post I couldn't believe myeyes it was though I had written it. I have had PMR since 2011 with all the usual ups and downs then on 18th December was diagnosed with sleep apnoea after my diabetic nurse referred me to a sleep clinic as I had "ticked several of the boxes". I am left reeling and confused as to what is going on, I just think when is it all going to end another issue to cope with. My next question is does PMR cause sleep apnoea or vice versa.

I could hug you all

[Megams in reply to lwhynda]

Hi lwhynda

I am really sorry to read you have had PMR 4 years.

I am also sorry to read that you are obviously diabetic a condition known to be linked by a variety of causes as you will know, sleep apnoea being one of them.

I can't answer for sure which comes first, PMR or sleep apnoea. I suspect sleep apnoea as being high on the list along with continued stressors plus some more factors into the mix.

What I can say as mentioned, is that I did not fit the classic profile of having this complaint, however I have known for a long time that there was something wrong with me as some nights as I would wake out of a deep sleep & sit bolt upright in bed trying to breathe.

I must point out this did not happen all the time, once or twice a month but had started to happen again this year.

I can say that my first husband recorded my snoring (25 years ago) and played it to my family at a dinner party - I was so embarrassed but upon reflection none of us twigged that I had a breathing problem nor was sleep apnoea known then - I was even slimmer then too.

I did have several nose operations, one to assist my breathing issues/snoring as have fine bone structure like my late Father, but the nose has absolutely nothing to do with sleep apnoea the Dr (Sleep Specialist) told me.

The operations have stopped me being a mouth breather and drains more readily when sinus's infected.

Please keep me posted on your progress.

Abundant hugs to you & positive thoughts for a wonderful "New Year" health wise when you start on the CPAP machine.

Mary Beth (NZ)

[paddyfields]

A friend told me, unprompted by me, some years ago that I stopped breathing at night when we were sharing a room on holiday and this confirmed my own suspicions. However, the GP dismissed this information. Later w hen I had a gynae op 6/7 years ago, they came in the middle of the night and gave me an oxygen mask because I was not getting enough oxygen. This is exacerbated by the whole trochanteric bursitis pelvic girdle PMR(?) scenario making me sleep on my back as hips become very painful if I lie on them for any length of time. Does anyone in the UK know whether you can self-refer to a sleep clinic?

[Megams in reply to paddyfields]

Good to get onto this immediately paddyfields, absolutely worth pursuing especially with possible PMR??

A few phone calls on your behalf to various sleep clinic's worth a try and don't take "no" for an answer from your GP.

Wishing you well.

Mary Beth (NZ)

[PMRpro Ambassador in reply to paddyfields]

My husband (whose department ran the sleep lab) says he doesn't think you can self-refer but that you can insist on a referral to a chest physician specialist at the hospital (unless things have changed recently). If it was some years ago - do you now have a new GP? Try again, sleep apnoea is a common and recognised condition and can be managed well.

If your hips are very painful despite pred and you can't lie on your side - you almost certainly have trochanteric bursitis which needs local cortisone injections. If your GP won't do it - again, try another GP and if that doesn't work - get a referral. If they won't refer - see the practice manager and explain the problem and if they won't help, change practice. And maybe take a partner or friend with you - it seems to concentrate their minds when they are being dismissive.

[paddyfields]

Thanks for the info. PMR pro . My hips are fine and don't pain me even

when I go for a 4/5 mile walk. But if I forget and lie on my left hip it does not immediately hurt but I then wake up a few hours later sort of stuck and it is painful to move. My left hip does not like being i n the air either but I ca n position myself very slightly away from the flat on my back position supported by my comfort objects - wheat bags. I have had injections for bursitis in the past .The dismissive doctor has retired and was very popular because he had a good line in nodding sagely. There's a bright shiny new young doctor who I saw today but by the time I had got antibiotics for cystitis, pills for urgency (combination of PD and urine infection), asked if I could try the viscose eye drops again for my blurred vision/ bloodshot eyes, I decided to call it a day.

[HeronNS in reply to paddyfields]

Could your hip pain be related to a nerve being impinged when you are lying down, but not when you are vertical? i can no longer sleep on my side either, but sometimes I have pain when walking, sometimes not, and the pain moves around so I think the problem initiates from my spine,

not the hip itself.

[paddyfields in reply to HeronNS]

Hi Heron NS

Recent MRI to check for impingement and an explanation quads.weakness showed

up "impingement on the traversing L5 nerve root" and some other stuff. The rheumatologist has decided my problems are " mult-factorial with an element of PMR". Judging by the MRI I could be a lot worse at my age and all things considered, I am in fact feeling pretty good at the moment on a 5mg maintenance dose of pred. as this is the level which keeps at bay the ill/fluey achy symptoms at bay of the PMR.. (..wot I 'ave not got!!). I also have Parkinsons which makes it difficult to decide what symptoms are down to what condition.

I have a sideways curve in my spine and it was explained to me that sometimes the body over-compensates in its efforts to maintain the upright position Hence pain may not necessarily be on the side where the actual problem is.

[HeronNS in reply to paddyfields]

Interesting. Glad you are feeling pretty good at the moment. Long may it last! Happy New Year. 🎉✨🎆✨🎉