why are you here?

[23bethy]

Dorsetlady, Thank you for the fine description of the disorder.. I have a better idea of it now. I've never been given the diagnosis, but have some symptoms that resemble those of your group. I am in the very early stages of receiving a diagnosis and joined HealthUnlocked to get support while I found things out. I hope that answers your question of why I'm here. I didn't get a very welcome feeling from you, I may add.

[PMRpro Ambassador]

This is only one of the forums within Healthunlocked - each forum deals with a different health condition and this one deals specifically with polymyalgia rheumatica and giant cell arteritis. Most people who get here do so because it has been suggested as a possible diagnosis. Obviously you have never heard of it. So she asked.

[nevagivup]

In defence of DorsetLady and PMTpro they do answer hundreds of queries on this site and have invaluable knowledge and input. There are always newbies on site and most of us didn't look for a specific welcome. We just want to gain understanding of our condition and benefit from the experience of others. We get plenty of that and for me that is all I could want.

[Tonysue in reply to nevagivup]

I agree entirely with you, Nevagiup. I hope the newbie continues to use our Forum. They’ll be able to see for themselves what a lifeline it is. And how helpful our faithful “leading lights” are.

[loopeyloo72 in reply to nevagivup]

Well said, nevagivup!

[kulina in reply to nevagivup]

Very well said. I wouldn't have survived PMR without the knowledge and guidance of DorsetLady, PMRpro and HeronNS and of course all the others.

[DorsetLady PMRGCAuk volunteer]

Sorry if you felt that.

It just seemed a random question, with no reason, so I wondered why you’d asked, that’s all. Most people say, “I think I may have GCA/PMR, or my friend/parent/sibling may have it ....can someone explain what it is please.

I wasn’t questioning why you asked per se , but was trying to get more info...perhaps it wasn’t phrased as well as it could have been.

[Insight329]

(Please read with a kind, empathic tone)

I think this is an example of putting one’s spin/intonation on anothers words. Happens to me at times. I’ll read something one way and then come back and re-read it and the sentence has a different tone. I think this was a simple misunderstanding.

23Bethy, you and your questions are welcome here. I’ve never seen the Aunties - DorsetLady, PMRpro, et al, turn anyone away. Quite the contrary - I’m constantly amazed at the patience and compassion they exhibit in answering the same questions each of us (with GCA/PMR) ask when we first arrive here. I have to think that at times they must feel they are stuck in a time warp like Bill Murray was in the movie Goundhog Day. But as this forum is for PMR and GCA, It’s natural to ask if you have a connection to these diseases — not to exclude but to find if there’s a connection and if not maybe direct you to another forum that might serve you better.

[Hidden in reply to Insight329]

Agree wholeheartedly with those sentiments insight329. I often delete a message that doesn't read right on second look. We have no nonverbals to allow us to use all the others senses that normally occur in f2f interaction.

[23bethy in reply to Insight329]

Dear Insight 329,

Thank you for your kind feedback and gentle persuasion. I'm usually someone who has enjoyed good health all of her life and so the kind

of discomfort that I'm having is new to me.

I tore my shoulder's rotator cuff about 6 years ago, surgery was not done because of the complete tear to the tendon. I did Physical therapy, acupuncture, and other modalities, but over the years, it's become chronic pain.... it radiates to or from the neck muscles as well and so now we're trying to locate where the problem originates. The discs in my neck are narrowing ; one quite a bit and there could be some nerve impingement involved. I'm 75 tomorrow; and expect a certain amount of discomfort but mostly I want answers that are clear. Doctors aren't always so good at diagnosis; rather they prescribe lots of medication which I don't favor... so that's my story; briefly. I may, indeed need advise from a different site; if you know one, I'd be delighted. Thank you.

[HeronNS in reply to 23bethy]

Hi 23bethy. I couldn't find anything useful on Healthunlocked (most forums aren't as active as ours!) not to say that there isn't something, but it's hard to find things on this site, but you might get somewhere with this one: patient.info/search.asp?sea...

Hope the link works. Get back to me if it doesn't.

Good Luck!

[Footfairy-1]

Hi 23bethy

God bless the "Aunties" and PMRPros. They are so supportive and have great knowledge from experience and information gained from reliable sources.

I really hope that you don't have PMR as it's such a terrible condition, but If you do and need any help I know they will be there for you as they have been for me and many others.

[borednow in reply to Footfairy-1]

I wholeheartedly agree with you Footfairy-1.

Plus some mornings as I ease myself very very carefully out of bed and glance in the mirror (always a mistake first thing in the morning), the title of 23Bethy's second post (i.e. Why are you here?) spring to mind!!!!!!!!

Onwards and upwards ..........

[Maisie1958 in reply to borednow]

borednow -I also agree with Footfairy-1.

And your second paragraph-a quick glance in the mirror is bad enough for me but steeling myself for tomorrow’s hair appointment when I’ll have several hours in front of a well lit mirror...🤦🏼‍♀️💇🏻‍♀️ Oh well at least grey hair no more but will still have the chubby cheeks 😂😘

All good wishes-you made me smile 😊

[borednow in reply to Maisie1958]

May have one up on you there Maisie1958 - when I go to the hairdresser I have to take off my glasses. Can't see a thing. Result!! Also very lucky in that hair has naturally turned a very fetching silver (thank you Mum) plus haven't been "blessed" with the chubby cheeks. Yet.

Have a good day.

[PMRpro Ambassador in reply to borednow]

Yup - same for me! Thank goodness...

I banned mirrors from this flat - just the bathroom cabinets. If I want to see the outfit I'm wearing for any reason I pop along to the lift.

We spent 3 weeks in a resort in Malta recently - they had enormous mirrors EVERYWHERE. Two in the bedroom! Really not nice.

[Hidden in reply to PMRpro]

First thing I do in hotel bedroom is put towel over mirror. Mind you that's because they are usually opposite bed and it freaks me out when I sit up in the night and think someone else is in the room!

[PMRpro Ambassador in reply to Hidden]

Would have needed double bed sheet!!!! Three of them. And a lot of duct tape...

[HeronNS in reply to Hidden]

Plus it is really bad feng shui to have large mirrors in the bedroom. I have a (small) full length mirror carefully positioned to create more space in a cramped corner of upstairs hall. Never even notice myself in it, unless I make a point of looking, because it's working more to improve space than to reflect passing people.

[23bethy in reply to Footfairy-1]

Yes, thank you; you're right, a little compassion goes a long way when you're ill and when you're not ill, for that matter. I will see a doctor this week and know more... I'm living in Mexico and I don't know if they have familiarity with this illness or how to test for it.

Are there preliminary blood tests that need to be done before any

temporal biopsy,( which sounds awful.)

[Lynnray]

People have off days and not just because of Pmr

I too felt when I asked a question last year a bit put off by some comments , but please don't leave , this forum is so great and helpful , you can normally find the answer to any problem , even if your put off asking the question!!!!

[23bethy in reply to Lynnray]

I'm glad that I'm not the only one who felt a bit put down.l. this site is for many things not just for one illness

[PMRpro Ambassador in reply to 23bethy]

That is what I tried to explain - the HealthUnlocked site as a whole is for many things. This particular forum is for PMR and GCA only and while we will try to help with other things we really don't know much about other disorders. PMR and GCA are more than enough!!!! If you have something else you may not get any responses that are relevant to you on this forum.

[Insight329 in reply to 23bethy]

Beth, I don't think you are seeing the big picture, because you probably stumbled on us by accident. Which anytime someone stumbles onto the HealthUnlocked site has been blessed as it's an amazing website for helping others.

Look at HealthUnlocked as a house with many rooms (called communities). One room is the kitchen and that room is for people with PMR/GCA, the next room is a bedroom and that is for those with Osteoporosis, the next room is the dining room and that is for Heart conditions, etc. You just happened to ask your question in the PMR/GCA room -- and why we don't know much about rotator cuffs, it's not our "thing". You need to find a room that discusses orthopedics, I think. (Many rooms/communities/topics all housed in the website of HealthUnlocked.)

Or another way to look at it is to think of HealthUnlocked as a hospital. You wouldn't go to the room filled with psychiatrists if you had a broken leg. You'd want to find a room filled with people with broken legs.

But here's what I think you should do to help you. Up at the top of the page, find the green HealthUnlocked sign. Click on it. It will take you to another page. On that page on the right hand side, you'll find a Search Healthunlocked button. In that area, type "rotator cuff". The HealthUnlocked website will look into every 'room' in which this has been a title in one of their posts. Scroll down through the page to see if any of the posts will be of help for you. When you are reading the posts, make sure you look at the top of the page on the left hand side and it will tell you what 'room' you are in, in case you want to join that room. As an example, if you scroll at the top of this page, you'll see that you are in the PRMGCAuk room.

Let's look at the first post to come up, if you've followed my instructions. It was posted by LavendarLady in the NRAS community 7 years ago. If you click on the bold Rotator Cuff title, it will take you to her post and the subsequent discussion.

Also, on that same first page when you did the search, on the left hand side, it will show you that 'rotator cuff' came up 587 times and will list what rooms/communities it was discussed in.

So, although HealthUnlocked does discuss many different illnesses, fortunately, it does it by breaking all of us up into different 'rooms/communities' so that we are speaking with those that have the same disease/disorder.

Hope that helps. And best wishes in finding answers.

[PMRpro Ambassador in reply to Insight329]

You really do fit your name!!!!

[Insight329 in reply to PMRpro]

haha! Which one? Insight or Joy? Both of them can be a curse.

I work with students and at the end of their course with us, they have to give feedback. One of the students commented that I was 'too wordy'. Ya think????

[PMRpro Ambassador in reply to Insight329]

I'll try to reply again - internet dropped last time!

In this context Insight. Wonder how much of the lecture they missed that mattered to their course?????

[Insight329 in reply to PMRpro]

In our course, lectures are mandatory attendance. We make them turn off their cell phones. And we give pop quizzes at the start of the lecture that are a part of their grade. They complain about it, but our National Board scores are 10 points above the national average, so we ignore their 'but we're no longer 10 years old' comments. It makes them start to study week one.

Unfortunately, we don't teach Rheumatology.

[PMRpro Ambassador in reply to Insight329]

"But we're no longer 10 years old" - then you should be old enough to understand it is for your own good...

[Hidden in reply to Insight329]

I got them at 18 upwards. Ditto cell phones and i told them I would lock doors to lecture theatre at five mins past. I also put flea in ear if they chatted. Not my ego...when I was a student it used to drive me mad when people chatted so I couldn't hear lecture. I was surprised anyone came back after a lecture on lecture etiquette 😂

[HeronNS in reply to Insight329]

Very good instructions, Insight. I have to say I've never had much luck finding things on this site but I expected to be taken directly to a relevant forum, not to a list of relatively random posts, so now I'll know better how to find what I'm looking for. Thanks.

[23bethy in reply to Insight329]

Thank you; that is helpful and I'll follow your lead.

[nevagivup in reply to Lynnray]

Lynnray, good post. I think sometimes we are unaware that others may not read the tone of the comments in the way that we mean them when we write them. They cannot hear the cadence in our voices. We just want to put into words what our problems are, because sometimes what we go through is anguishing. Yes, sometimes the comments seem a bit miffed. However, we are all individuals with a different experience of our disease and a different way of saying and doing things.

[Hidden]

Emojis are there to indicate the spirit of the message just in case text is open for misunderstanding. My mood today?😲😭😝😂

[PMRpro Ambassador in reply to Hidden]

This forum doesn't make emojis easy though - the other 2 forums do provide an editing option for them.

[Hidden in reply to PMRpro]

It could also do with something beyond "like". I think people understand you are empathising or whatever when you use it...well hopefully!