I’m getting my positive head on...

[Soraya_PMR]

Last 3 days I’ve walked 10 miles (total) and do feel better when I push myself to walk rather than letting the fatigue drag me down.

So 2 walks today, a mile each with a rest in between. Then I played bowls (badly). Then GP appt! He thinks my axilla pains are ‘referred pains’ although no clarity as to where it’s referred from (shoulders?). Headaches are ‘tension headaches’ and I think I agree. They were worrying me as the headache never really goes, just waxed and waned, worse in the evening. There are 2 parts, behind my head running from ear to ear like a curve at the base of my skull; and pressure into temples, across forehead and into right eye. He suggests amitryptylline is good for tension headaches. Doesn’t think chiropractic will help. Oh and my ESR is still not raised! I should bloody well hope not considering it was 11 at the outset and now I’m on pred. I did not say this, just thought it, I was trying to be a patient patient today And did you know PMR is “inflammation of the muscles”? No neither did I, gotta laugh!

Then to make appt for opticians. Only 6 months since last, but this way I get the back of my eye checked and pressures.

Then to a discussion with chiropractor. Not seen him before (my chiro retired ) but he has all my old notes, and just saw my old chiro noted in Feb 2017 “?PMR”. Quick chat. He has 4 or 5 other ladies with PMR and is intrigued by the variance in level of disability. He thinks that getting the body balanced will allow a patient to then get best response from pred and manage PMR. Plus he said my GP doesn’t like him! LOL!!! This could be the guy for me so of course I have booked a proper appointment. He took a quick look, pelvis is tilted, which maybe why my right hip is naughty, and he was impressed when I suggested piriformis? as a possible cause of my bum/hip pain. Pelvis is also forward on one side. Right shoulder is lower than left, this could be increasing left shoulder pain. Oh and he said my description of the headache absolutely follows the nerve pathways from a cervico-vertebral problem, so yes ‘tension headache’. 🤕 I told him I had no raised blood markers, and this was ‘interesting’ to him in a non-dismissive way. So I’m hopeful that my additional aches and pains of late may be the ‘add ons’ and not pure PMR. So I’m not going to increase my pred, have been very tempted last couple of weeks. And I’m not going to take amitryptylline as this isn’t getting to the root of the problem. Must remember to mention the axilla pain to him (much like the groin pain I had pre diagnosis) I bet it’s an unhappy muscle(s) around the upper back/shoulder. Fingers crossed that chiro is good for me 🧐

Plus, it’s bubble and squeak for supper and I am ravenous! Again And there’s a beautiful sunset between the clouds, and the birds are tweeting their heads off 🐥🐥

Sorry, longer post than anticipated, but it might help others with headache worries? I know I get a bit paranoid about headaches ☺️

[PMRpro Ambassador]

Love it - your chiropracter sounds worthy. Unlike your GP!

Muscle inflammation my hoof...

[Soraya_PMR in reply to PMRpro]

Hooves? You have hooves??? 😧

.........any horns?.......(exits stage right —>)

[PMRpro Ambassador in reply to Soraya_PMR]

Did you expect any less?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Nope!

Let me guess, you’re a unicorn!

[PMRpro Ambassador in reply to DorsetLady]

Maybe that's a good idea - the daughter is in love with unicorns...

[Soraya_PMR in reply to PMRpro]

Erm....

No. Yes. No! I don’t know your demon-ness!

Actually wings and a halo maybe, with a side order of hooves and horns for really naughty doctors

[PMRpro Ambassador in reply to Soraya_PMR]

Had a troll on another forum recently - I'm here making money out of you all with every click they said

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Really??

Must be your castello in the mountains wot give it away! 🏛Greek I know, but could find an Italian one!

[fren]

....and we have a hell of a storm, and it is raining through the velux.....swop you for your sunset?

Hi Soroya, congratulations on your walking, that is some achievement. I hope your Chiropractor comes up trumps, and you get that pain in your bum sorted.

Like you, I plan to use my Opthalmology appointment to discuss the transient head pains that I have recently experienced, probably stress. She is a very thorough expert and I trust her.

Enjoy your Bubble and Squeak,

Take care, Fren.

[Soraya_PMR in reply to fren]

Thanks fren.

Pain in bum has eased a bit (walking?) and has slipped down to right hamstring and calf (over walking?) I’ll see how a night’s rest and tomorrow’s walk affect it.

Headache not too bad tonight, and no shooting pains through temple probably because I’ve decided it’s not serious and am more relaxed after speaking to chiro.

Please may I pass on the sunset swap? We had so much rain recently the main road to hospital was half flooded. Again!

[PMRpro Ambassador in reply to Soraya_PMR]

Piriformis creating sciatic irritation...

[Soraya_PMR in reply to PMRpro]

It’s so difficult to put pain into words. I don’t think this is sciatica. It doesn’t feel ‘nerve-y’. Neither does it feel PMR-ish. It feels like a good old fashioned muscle ache due to overwork. Only hurts when I use those muscles. So maybe DOMS? I shall just do a slow short saunter today and see how it fares.

I have a vague recollection of me slipping in a muddy puddle yesterday, think it was this leg that got yanked?????

[PMRpro Ambassador in reply to Soraya_PMR]

That was how mine felt in early PMR, aches that tracked the sciatic nerve. Mine would spring to life if I was on a bus that stopped and I didn't - you know what I mean? Or my back muscles would protest violently at just catching my head getting in or out of the car. And then the referred discomfort would creep in.

[Soraya_PMR in reply to PMRpro]

Yes I know what you mean.

Overly sensitive muscles that get startled at tiny stimuli, and continue to complain well after they should, making a proper meal of it, and then some.

[PMRpro Ambassador in reply to Soraya_PMR]

They go into spasm to try to protect themselves and other structures from further damage - and then can't get out of it without help. I know HOW but finding someone who can help isn't easy or quick.

[Soraya_PMR in reply to PMRpro]

My (retired) chiro used to describe my back as a ‘brick’. She could release it, sometimes painfully, but worth the short lived pain for release and relief. This of course was disc issues. Quite how my PMR muscles will react to chiro remains to be seen. But I know I need straightening, something approximating symmetry would be good. I’m in two minds as to whether to say ‘be gentle with me’ or ‘go for it!’

Hamstrings now feel ok, better but not perfect. And feeling so good this morning, I gave the dog her pills and forgot my pred!!!! Remembered (was nudged by increasing aches) at 11.30, so took some plain pred for speed. An hour and 15 minutes later, all settled, so maybe it is PMR pain? Just jiggled by my increased walking? I’m trying to listen to my body, but frankly it’s talking Double Dutch at the moment. Anyway, have done a slow mile walk, so can’t complain.

[PMRpro Ambassador in reply to Soraya_PMR]

I found I needed the combined efforts of osteopathy and Bowen. And the MPS and PMR definitely sing in chorus - if not in tune!

[SheffieldJane]

Love the happiness that burgeons through your post. I think you’re winning! 🌹❤️🦋

[Soraya_PMR in reply to SheffieldJane]

I do hope so Jane!

I was quite convinced I’d be increasing my pred tomorrow. However once GP said chiro probably wouldn’t help as PMR is inflamed muscles (!) I just knew I had to speak to a chiro. LOL that’s just me and my typically warped thinking. I explained very briefly to the receptionist, and within 30 seconds I was sat in front of this chap who LISTENED to me, offered me valid and understandable explanations, gave me a quick check, and said he could help me and therefore also help me to manage the PMR. It’s what I needed to hear as have been down in the dumps with this and that pain and worry. We all need a bit of hope to hang on to I think. And yes I know it’s a business and I shall be paying for their services, but frankly I don’t care! I want my life back. Now I know I can hang on at 9mg and not take a ‘backwards’ step by increasing.

The lifting of that cloud, and there was the sun setting and the birds I’m sure they were there before, I just didn’t notice.

It was someone’s post at the beginning of the weekend, about making a change, that spurred me on, and I HATE the fatigue that plagued me, so I decided to walk more. Today I decided chiro & optometrist. I’m on a roll......

[PMRpro Ambassador in reply to Soraya_PMR]

Between them, my osteopath and Bowen therapist kept me upright and reasonably mobile for most of the first 5 years of PMR, the ones without pred. I do miss them - but I get almost equivalent management from the physio here. Not Bowen, they are a bit wishy/alternative here unfortunately.

[Hidden]

Dear Soraya, It sounds like the pendulum is beginning to swing the other way... good on you! I admire your tenacity and dedication to getting out there and walking each day! YEAH!!!! Everyday I say I'm going to go for a walk and then I don't... Motivating yourself is so hard! Hope you have a GREAT day today and I hope you enjoyed your Bubble & Squeak!

[Soraya_PMR in reply to Hidden]

Do it Melissa! Take that walk. Even if it’s only to the first bench where you can sit awhile and people watch. Allsgrandso and I did a ‘virtual-together’ walk yesterday and both felt better for it. Will you join us? We may have to stop for a cuppa halfway to rest our ‘leads’ (heavy legs).

[Hidden in reply to Soraya_PMR]

I did it Soraya!!! You motivated me to leave the house and take a walk... It helped that the art gallery sent an email saying that "Divine Gintervention" had to be picked up by 6:00pm, as they have a new exhibition going in tomorrow! ...but in any case I walked into town and back and managed 3,642 steps or 1.6 miles!!!!!! yippiieee me!

Thank you!

[Soraya_PMR in reply to Hidden]

💃🕺🏻💃🕺🏻💃🕺🏻💃🕺🏻

That’s supposed to be a jig, but looks more like a cross between a tango and Saturday night fever! No matter, it’s a celebration of your 1.6miles. Way to go Melissa!

Do you feel better? Tired maybe, but energised? Proud of yourself? You should be

Now rest!

[Hidden in reply to Soraya_PMR]

It does look like Saturday Night Fever out of my blurry eye!

Yes, I feel tired but energised!! Thank you!!!!!

It was cold and a bit wet, but it felt GOOD!

xxxx

[PMRpro Ambassador in reply to Hidden]

A gentleman on the patient forum was most upset about not being able to exercise - his wife had delivered him to the GP in a wheelchair for his PMR flare to be sorted. So we told him to get out of it and walk for 5 mins out, 5 mins back, less if that was too much to start with, and build up slowly. That was this time last year. He has been teaching littles skiing all winter and cycled 10 miles yesterday. And he has reduced from 30mg down to about 8mg I think in the meantime.

The trick is to start small - if you do too much you fail/it hurts and it puts you off.

[Sandy1947]

👍 Very proud of your walking achievement! Pursuing the chiropractor was also a great move. My Dr. suggested doing everything possible to help myself feel better. Just completing loose ends of the sale of my business. It took a year to get to this point, I knew I couldn’t continue mentally with PMR as my constant companion! Tai Chi, massage, lots of Zumba and weights really help me. Walking in NY also improves mental and physical condition but I need spring weather to go. Motivation has been totally lacking! PMR requires ideal weather conditions!

[Soraya_PMR in reply to Sandy1947]

Thanks Sandy. I’m hoping the chiro can ease all the ‘extras’ and thus reduce some of the fatigue. I know PMR brings fatigue, as does pred, but I also know chronic pain brings some as well, plus depression. So if I can kick that into touch I’m in with a fighting chance.

I woke today and my initial 10 minutes were typically urgh! But then you know what? I drew the curtains and there’s some blue sky, and for the first time in at least 18 months I feel as if my night’s sleep may actually have refreshed me? That’s not to say I won’t need a nap later

I did do a taster session of tai chi last December, unfortunately it coincided with my flare. So I didn’t persue it. I spoke with the teacher, and she asked me to email her with some bullet points about PMR......now if I can only find her card, I might contact her again. Zumba I think might be a step too far and weights, well I’m carrying an extra stone, does that count? LOL

Shame about your business, but yes I do understand. PMR and pred wollop us in many ways. No way could I do my previous jobs, I’d be a danger to my patients/clients. Something devoid of responsibility which includes multiple tea breaks maybe?

[Sandy1947 in reply to Soraya_PMR]

Forget finding the card, find a new Tai Chi practitioner or class! I hated the first teacher and love the next one who is 87! It’s gentle which I was not used to. As a type A personality, I did high impact aerobics and heavy weight training. It’s not easy being buffed!

It’s really a blessing PMR pushed me to sell my business at the top of my game! I worked in the ghetto and being a financial advisor got continually harder and more complicated. I love being in my sweats all day!

I am the founder of a charity that distributes gowns to the poor. Scholarships are given to students who do community service with us. This is my 16th year and it’s huge. Moved over 15,000 gowns and $35,000 in scholarships. So that is my “work” for now.

I hope you feel better and find relief for all your aches, pains and fatigue!

[Soraya_PMR]

Opticians today. He was very thorough, retina, pressures and fields all good. But I do have the start of cataracts, this since November check. Boo!

He wasn’t convinced about tension headaches, palpated around my TA, no pain or swelling. Didn’t like that I have some jaw pain, and said I must get an ESR, and that he’d write a note to GP and “GP will HAVE to act” on a note from him. I thanked him, but declined, explaining my ESR will not be raised, it never is. I think he was a bit disappointed, and tried to persuade me to let him contact GP. I promised him I’d go straight to A&E If jaw pain increases, or any sight issues. He concurred that the pred should protect me. (9mg)

Met up with girlfriends for lunch, and we talked a lot, I did have to stop talking a couple of times due to jaw ache, but it’s also minorly aching at rest, so I’m not convinced.

[PMRpro Ambassador in reply to Soraya_PMR]

Hum - 9mg won't protect you if it is GCA hatching. That's the line some doctors take. And I'm afraid it isn't true.

[Soraya_PMR in reply to PMRpro]

What do you think of this plan...?

One day at 15 to see what the headache does, before I see chiro.

[PMRpro Ambassador in reply to Soraya_PMR]

Up to you - wouldn't do much harm and you can drop straight back, but would one day be enough?