Third blood test was slightly better than these numbers. 5 weeks in with PMR diagnosis, too much time on my hands and realizing there's no quick fix makes me feel out of control. Yes, 70% of pain is better with 25 mg Pred., taking it slow is totally different and in some ways better than life in the fast lane, but now I am "Marker" concerned! Is there any way I can help reduce these scores? As an overachiever my entire life, I want to work on improvement. Also learning patience (not easy) requires adjustments especially as I age. Let me know if it's simply a long process.
Thanks forum friends for letting me express my daily rant. Could not move in a positive direction without you.
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Sandy1947
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The only way you will "improve" your markers is to take the correct amount of Pred that your PMR requires, and ditching the 'over achiever' syndrome.
That doesn't mean doing nothing, but regulating what you are doing! Pacing yourself to accommodate your PMR, and learning to live with it, not rail against it. Eating sensibly, exercising sensibly, and resting, and not stressing about it!
As I said previously, PMR has a mind of its own - it appears apparently from nowhere, hangs around as long as IT wants to, and then, (when it's ready, and not before) goes away again. If you're lucky, maybe 2 years, more likely 3or4 years, for some people it just stays!
You may not feel in control at the start, and that's because you haven't really accepted it - when you do, you will find that by your actions you are actually controlling how you are everyday. Your illness may be with you for a long time, but your reactions to it can make that journey easy or more difficult.
I appreciate your meaningful response. The road to acceptance takes time. I managed my spoons yesterday by doing just a little walking, a little hot tub, lots of rest during the day then the theatre at night. Did snooze during the first 2/3 of the play but was awake for the last 1/3 which was quite good. Spoon management is a process.
Thanks for the lessons in what to ditch and what to keep! You are a blessing. Your help is invaluable.
I never had shoulder pain pre PMR, pain is bolster but slightly worse on left side. Today I feel almost pain free. Unpredictability is puzzling. I will ask the Dr on Monday if it could be anything else. I will be preparing my questions over the weekend during rest period! At the airport back to busy JFK airport in NY then Uber will take me to NJ. Home to rest and see Joey my dog! Yeah!
Not really, unfortunately English weather doesn't look too good.
I only live about 9 miles from coast, so I'll probably pop down and say Hello anyway - need to get my fix of the sea regularly! Put it down to being born on an island and Viking ancestry!
But as I've just come back of 10days away with son & extended family in villa in sunny Spain I'll cope!
Yes - simply a slightly longer process than you want it to be! If you don't manage anything else by the time you have finished you will have learnt patience and (probably) acceptance. That isn't giving in, it is stopping resisting, stopping fighting and learning to use the energy for something far more useful.
Thanks. Yes, I'm on the patient.info forum also. It 's harder to negotiate than this site. Having trouble accessing responses to my last post. At this stage, I'm ready to attend a support group in England since I can't find one in NJ or NY! I feel very needy which is not my way. I've always been a very independent sort. Oh well, things change. Thanks for always being there for me and all my friends!
Once you get there - you can find EVERYTHING!!!! If you click on your name at the top right corner you go to your profile page and that lists all the posts and replies you have ever written.
Sandy, I completely understand how isolated PMR can make you feel; you'd think in NJ or NY with their huge population someone would have set up a support group by now. And it's all very well for those who've successfully done it to say, well, make your own support group. But it isn't always possible. There has to be a certain set of circumstances and if they don't exist, well not all of us know how to change those circumstances.
Why would anyone just "set up a support group"? Whoever starts one faces the same hurdles and a similar set of circumstances. If it weren't for a few women with vision you wouldn't have this forum - or the UK support groups. And they are not all from the same place.
It doesn't have to be a formal support group at first - you only need one other person. Social media makes it relatively easy to find others in the region - or a notice in rheumies offices, ask your own rheumy if they have other patients - and leave a contact to be given to them if they are interested.
Brilliant! Will ask my Dr. on Monday for a group and leave my contact info as well. With your help, and the help of people on both forums I'm getting a lot of support. Perhaps as time goes by when acceptance and adjustment develop more emotional muscle I will not feel so needy. I have the following plans: join a gym with a pool, since the hot tub was so great on vacation, sell my business which I started prior to the diagnosis (seems like the right thing to do) learning the skill of pacing and reading books during my long afternoon rest period (something I haven't done in years) I actual get into my cozy bed, pet my 12 yr. old blind, arthritic Coton and use PMR as an excuse to really relax. Giving up an A personality isn't so bad. All those articles really help.
You are doing a wonderful service in helping me heal! Thank you so much. I bless you and the others daily...especially at 5:00 am when I write and clear my PMR head! Stay well!
I mention the need for the right circumstances. In my past life I was instrumental in starting a drama club at my school, starting a Toy Library, and beginning a writers group which still functions and has produced a few published authors (not me). Every one of them started with my saying to someone we should start a ... whatever it was. The Toy Library in particular, I said to a friend, I wish there were such a thing as a toy library. She said there were toy libraries, there was one in the city she used to live in. And the rest is history as a group of us had one set up and running within a few months. It outlasted our children by years and was a going concern until the insurance industry went haywire after 9/11 and they couldn't afford it any more. But the point is, the time and place and people were right. There is no one here that I can say, I wish there was a support group for PMR/GCA patients. Who would I say this to? I do not have that "one other person". Yet it has been expressed to me on the forums that if I want a support group I should start one.
5 weeks into PMR I'm not ready to start a group. However, planting the seed for the future as a possibility works for me. In the throes of selling my fiancial services business is about all I want to deal with today. Tomorrow things will change.
Thanks for sharing. All your accomplishments are impressive. Endorse yourself for all you've done to make a difference.
If you make it informal all you need is a venue, maybe booking a table for attendees, put a post on here asking if anyone's interested, and then all you need do is email them as and when.
I belong to 2 different ones, both of which are very informal - just a chat and cuppa, we meet up about every 2 or 3 months.
I realise it's easier in the UK, as distances are much smaller to travel, but if you only meet occasionally most people will be willing to make the effort.
It does make such a difference to talk to others who are in the same situation.
You like a project - go for it! That way you'll feel you're doing something positive.
A couple of people have appeared here who live not all that far from me, although only one potentially close enough to meet at all conveniently. They are apparently not at all interested, because when PMRpro mentioned that it looked like we had an infant support group, there being two of us in the same, or at least very close communities, I never saw another post from the other person. See what I mean? You do need the right circumstances. One person crying in the wilderness does not a support group make. And even harder if you are, as I am, very shy. But it may not matter to me much longer, fingers crossed. I think I've already weathered the worst of the PMR journey, thanks to the people here and on Patient.
Please don't cry alone in the wilderness! I (and many cyber friends) will hear you! Although we prefer personal connection, this nasty companion PMR makes adding one more acivity to the mix (a support group) too challenging.
Your journey of weathering the worst inspires me because I'm only beginning with a lot of changes to negotiate. Mentally, I'm not at the top of my game. Pred head has been added to the mix. Couldn't manage without this site and patient one. If one more person says, you don't look sick I may hit them. I feel like I've aged 100 years since the diagnosis! I told my 94 yr. old mother who lives alone, has a boyfriend and goes to the gym I feel like we've traded ages!
Ranting helps me heal. Thanks for listening at 4:00 am while I anxiously await my 5:00 dose of Pred!
hi Sandy. I discovered Patient when I was in the middle of a wakeful night and felt I'd fallen among friends. <3 Must have been about two months into the PMR journey. I know what you mean about aging. I can't stand that I'm now an old woman and there's no turning back the clock but mostly I try not to think about that. I just "pretend" that I'm as spry as ever, but hating that the word "spry" now seems appropriate.
This was absolutely excellent! I identified with every point. It made me feel less alone and unique in my fears, anxieties and symptoms. It should be required reading for anyone with PMR.
Thanks for your constant and appropriate responses. You make enormous sacrifices to help others struggling with this surprise condition that pops up out of no where.
Yes I appreciate it's not that easy, especially when you have long distances to travel. Plus if people aren't interested there's not a lot you can do.
Actually the first time I went to a 'get together' was only just over a year ago, so virtually at the finishing post of GCA. Not because I didn't want to, but because I didn't really feel the need to - always been a very independent lady in that aspect. This forum is brilliant, but it's also nice to meet face to face, if possible.
I also know what you mean about being shy - but sometimes you have to put yourself out there (in the nicest way), you'll probably find most people are a bit dubious going somewhere new for the first time.
When my husband died, I felt very strange going places on my own, old and new, but it was the only option if I wanted a life outside my house - so I girded my loins and off I went. After a while it becomes easier.
Thank you Dorset Lady. I'm feeling a bit low at the moment. Started to write out all the stuff that's wrong at the moment, and over which I feel I have no control, but it was just a whiny jeremiad, so....
Hi again. Yes we all get low days, and certainly we are all entitled to our 'whiny' days! You may feel you have no or little control, but by writing it down you have taken control.
I'm sure many on here, myself included, appreciate your knowledge, advice and constructive comments on our down days.
Remember too this forum is very user unfriendly and even I miss posts sometimes and I have every possible option ticked for notifications! Anything in the middle of a thread might as well not exist for some people.
What a stunning spot in your photo. I think just being there would lower my markers. Just breathe, use this as an opportunity to explore a different way of being. Nobody is born competitive, striving to be the best. Maybe there is a little Sandy inside who just wants to be.
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