GOOD NEWS FOR ONCE: I have had PMR for 4 years... - PMRGCAuk

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GOOD NEWS FOR ONCE

Mary63 profile image
21 Replies

I have had PMR for 4 years, diagnosed Jan 2016. Throughout I have been knackered, felt my life was on hold with the need to rest and pace. Had to more or less retire from my work as a specialist nurse in food intolerance. Concurrently major probs with cartilage tears in L knee, followed by 2 arthroscopic repairs and eventual total knee replacement in Feb this year. Complications including two areas of tendonitis, which seems to be more common with PMR.

So what’s changed?

I am now down to 6mg prednisolone, so feel that I should be in the window for adrenal issues.

Well I had four sessions of acupuncture aimed at helping with fatigue and energy levels. Since the third session (5 weeks ago ish) I have not needed a daytime sleep. This for me is mega, as until then I had to plan my life around allowing myself a sleep. I feel SO much better, and people around me say I am back to being ‘me’ again.

I’m not counting my chickens yet. By the way three weeks ago I started a slow reduction to 5.5mg and within one week I had shoulder and pelvic pain return, so my PMR is still definitely active.

The other thing I tried was, following a suggestion on this forum, was ‘Star of Bethlehem’ Bach flower remedy. Within a couple of days I felt less ‘low’.

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Mary63 profile image
Mary63
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21 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Good!

Did you go back up to 6mg with the pain? Has it helped? Just go really slowly from now on - will help both PMR and Adrenals!

Mary63 profile image
Mary63 in reply to DorsetLady

Yes thanks I am back to normal on 6mg

You seem to usually have a good sense of what's going on so enjoy the respite. We have to get our ups from somewhere. 🌻

Mary63 profile image
Mary63 in reply to

Exactly!

powerwalk profile image
powerwalk

Thats great. Keep doing good.

Mary63 profile image
Mary63 in reply to powerwalk

Thanks. I will go easy.

piglette profile image
piglette

Gosh, you are so lucky, acupuncture did absolutely zilch for me!

PMRpro profile image
PMRproAmbassador in reply to piglette

Maybe it didn't help what you wanted at the time?????

piglette profile image
piglette in reply to PMRpro

That is true. Apparently it is particularly good for morning sickness.

Mary63 profile image
Mary63

I know Piglette. I remember you saying. I don’t know whether it is because mine came from Uzbechistan (excuse spelling) and was actually an acupuncture lecturer there before she fell in love with an English charity worker and moved here.

SheffieldJane profile image
SheffieldJane

I am glad for the positive results you had with Acupuncture and glad that the Bach Flower remedy has raised your spirits. These are all signs of a return to health. Especially the feedback from family and friends. I am used to being told that it’s like the stuffing has been knocked out of me. Let’s hope that this really is the sun peeping out from the clouds Mary. I have been with you for nearly all of your journey. Here’s hoping all your eggs hatch!

Mary63 profile image
Mary63

Here’ hoping all your eggs hatch! I love that..... your wording always makes me smile Jane. Thank you.

Suet3942 profile image
Suet3942

Hi Mary. You’re doing so much better than me. So happy for you. I would be happy to be on 6mg. Never been that low. Xx

Mary63 profile image
Mary63 in reply to Suet3942

Yes thanks Sue. I am doing well (at the moment). I was stuck at 7mg for more than a year.

Noosat profile image
Noosat

Good for you ! All our bodies are different so different things work for us. I found, now at 4mg,. that after I joined a group in which I had to make certain commitments that I was helped with the fatigue. The main commitment was exercise, I even have to meet with a trainer once a week. So no matter how I have felt this last month I have forced myself to go to gym and be active. Surprise is that the fatigue has lessened somewhat and I am walking with better balance. To-day I go to chair exercise/yoga, really harder than it sounds, and this evening go to a meeting of the group, about 16 people all sizes shapes and ages, where we eat a salad and discuss our progress.

Mary63 profile image
Mary63 in reply to Noosat

That group sounds great. Is that NHS funded?

Noosat profile image
Noosat in reply to Mary63

No, I live in the U.S., in the "hill country" of Texas. The program is called Fit4Life and it is through a place called Kroc. which is a facility set up by the Salvation Army through the Kroc Foundation. It is a state of the art gym with swimming pools etc. Most of these facilities are in large cities, but this small community of 20,000 persons had someone on the Foundation Board and thus we were lucky to get one here. There are only about 20 participants in each class which lasts for one year. It emphasizes healthy eating and movement. A person has to apply to see if he/she can be accepted. Acceptance depends on the health problem and if one is mobile (I did see one person walking with a cane. I think he had a knee replacement) I qualified with hypertension and balance problems. Not all, but most in the program need to lose weight. So for most a weight goal is set for each period. The year is broken into 4 month periods. I have a trainer who I have to meet with 14 times each period, and attend a number of hours/classes at the gym. I find that the routine is helpful.

Mary63 profile image
Mary63 in reply to Noosat

What a fantastic opportunity.

Jackoh profile image
Jackoh

Great that you have some good news to report. X

bunnymom profile image
bunnymom

So glad for your improvement. That's wonderful to hear. Hope you are on the road to the end. 🌺

Mary63 profile image
Mary63 in reply to bunnymom

Fingers crossed Bunnymom!

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