Looking for some polymyalgia friends

[FohFoh]

I’m computer savvy but have never reached out for help. How are you faring? What are your successes? I’ve been ailing since 2015 and the misery has taken over the joy in my life. I’m a retired nurse, but my life work hasn’t helped me at all with this disease. I’m a mess. I really hope to hear from someone. Thanks

[Queenie1901]

Hi FohFoh. There are many caring and knowledgeable people on this forum who will respond to you in such a comforting and positive way. I am a novice but I just wanted to say that for me finding this forum was the best thing that ever happened to me on this PMR journey. It won't be long until the replies flood in and you will be uplifted by the care and support. Hang in there. Take care

[HeronNS]

Looked at your profile. Sounds like you did not receive the best care, but what's done is done and I'm sure you'll find good support here. Most members are in the UK, so you'll get more responses tomorrow - it's midnight there now! Why were you kept at a high dose of pred for two years?

[FohFoh in reply to HeronNS]

I think because my doctors just didn’t notice. I may have contributed to the problem because I was a nurse who worked with these doctors, so they knew who I was and assumed I knew what I was doing. I was in increasing pain and kept it to myself because I was afraid I would come across to them like one of so many patients we dealt with who whined and complained a lot for no good reason. They WERE monitoring my blood work, however, and they saw the soaring inflammatory factors, so I don’t understand why that didn’t raise any red flags for them. Oh, they started paying attention when my hip began to hurt in an odd fashion, and it turned out to be a fractured pelvis. By then, I was done for because the osteoporosis had settled in.

[SheffieldJane]

Hello and welcome FohFoh! You are in exactly the right place with an all too familiar story. Spend some time looking at FAQs and orientating yourself on the site. Then come back with how you are now and what drugs and doses you are on. Friends will come flocking to share experiences and offer advice.

[piglette]

If you have PMR and you are taking the right dose of steroids you should not have such agonising pain.

[Kendrew]

Hi FohFoh. Firstly, welcome to this site.....this is where you'll find reliable advice, knowledge and support whenever you need it. Many of us here will recognise your 'story' and much of what you've said will be reflected in our own personal experiences too...particularly where the condition has had not just a physical impact but an emotional impact also.

I'm 63yrs old and if you read my profile you will see like so many others, I've had challenges to address over the 2½yrs since my diagnosis.

My life has changed dramatically, and initially, all I could focus on was the losses in this new life. Loss of health, loss of strength, loss of stamina & endurance, loss of energy, loss of self esteem, loss of confidence, loss of my ability to do a job I loved, loss of expected certainties in life and most worryingly....loss of me!

I had to find a way to turn this around though...I could feel my joy of life draining away and my purpose for simply 'being' fading more and more with each passing day.

So!.... I read up about my meds and their possible side effects. I educated myself as much as possible about my condition and then I made the necessary changes to my diet, my exercise regime, my work and my overall lifestyle....all in an effort to minimise and ease any negative impact of either. Some of these changes were incredibly difficult to put in place and took all my mental strength to accept and implement but the rewards for me have been bountiful and have definitely eased many of the problems I was encountering.

I've learnt that once you accept your diagnosis and stop fighting it, many of the uncertainties and anxieties begin to diminish.

Yes!... there are things I cannot do at the moment and yes!... I've had to adjust my life and yes!....it's a longish road to recovery, but......recovery is not an impossible expectation. In fact it's quite likely for most of us, but it is a slow and steady process that can't be hurried. I have new 'normals' now and different expectations for myself but I do indeed still have a life...and a good and fulfilling one. Its still difficult at times, but it no longer feels hopeless like it has done at times.

Before I became a teacher I also had a nursing background, and as you indicated, that didn't seem to serve me too well either at first. PMR/GCA is not a condition that can easily be managed and it's unpredictability makes life even more stressful and uncertain at times. However, through the advice and knowledge shared with me on this forum, I am now feeling much more 'capable', confident, reassured and able to live a life that's still purposeful, joyful and for the most part, functional.

My main concern for you is that the level of pain you're still experiencing does seem to indicate that you may need a review of your meds.

Pred should eliminate (if not all) certainly most of the pain experienced from PMR, so it seems unusual that you're still suffering at such a high level.

So, maybe try to sort out the meds and once you get your pain under control then you can start to focus on those other aspects of the condition that require some attention and adjustments.

I promise you that life can and will improve and you will eventually get there, but you can only work on one thing at a time to begin with. Whilst ever you're still in so much pain you're not going to be able to focus on much else though so try and remedy that first.

[Hidden in reply to Kendrew]

Once again Kendrew, a good and informative reply. I wish I could get my mojo back. I suppose the winter months don't help and the dark early nights too. My tapering regime seems to be going well at the moment....hope I'm not talking too soon. Now on 7mg with the odd day of 8mg. Soon more 7mg with the odd day of 6mg. This very slow taper seems to be working for me. Just hope, when in March this year, I was taking 6mg GCA hit me again. Fingers crossed that doesn't happen this time.

Best wishes

Anne

[Kendrew in reply to Hidden]

I think winter is a difficult time for most people. I try and get outside as much as possible...even on rainy days. Just seems to help lift the mood. Well done on your tapering. Fingers crossed for more success.

[Hidden in reply to Kendrew]

Thanks X

[FohFoh in reply to Kendrew]

Thank you so kindly! Your words are very meaningful to me!

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Sorry to hear you are still in such a bad place …..

Maybe now you are here have a look through the FAQs link - will give plenty of info -

healthunlocked.com/pmrgcauk...

And although you are not a new patient, this may give you a better insight into your PMR -

healthunlocked.com/pmrgcauk...

[123-go]

Hi, FohFoh, welcome to the forum.

I'm so sorry that you've had these years of suffering with other conditions piling up and adding to your pain and anguish.

It won't be any consolation to hear that I do feel that your continuing problems are due to very poor management on the part of your rheumatologist. We often hear from people in the US and it does seem that its rheumatologists are often far less knowledgable than in the UK. It would be a fine thing if you could rip it up and start again but you are where you are and you will learn a great deal here. The question is, where to start!

Many of us on the forum have had a bumpy PMR journey with its attendant problems and often that has been due to poor management from the beginning but the wise and knowledgable people here that we call our 'experts' have saved us in many respects. I am certain that those experts will be on hand to offer advice and sound suggestions to help you on your way.

In the meantime, as has been suggested, familiarise yourself with the site using your enviable tech skills.

If you could give us more detail of your history regarding prescribed medication and duration and any good/bad responses it will help unpick/pinpoint where or why the successes and failures occurred and help in understanding your particular case.

Detailing years of history is a big ask and draining both mentally and physically but a chronological diary-like report would be helpful if you can manage that in small steps and present it here as and when you are ready.

This kind of sharing prompts responses from others who have or have had similar experiences.

I'll finish by saying that there will be lots of tips regarding how to find some joy in your life despite everything. The guilt you feel in necessarily involving your husband who has his own problems will be lifted when you find that you are not alone in this.

My very best wishes are sent from across the water. Miles are not a barrier to support and encouragement 🙂.

[FohFoh in reply to 123-go]

Thank you. You have brought tears to my eyes. I will write again and give you a more detailed history of myself when I can take the time.

[123-go in reply to FohFoh]

No pressure, FohFoh. One step at a time. 🌸

[PMRpro Ambassador]

Hi and welcome - ask and you will receive answers, maybe more than you would like!!!!

However, I have a question: why do you you take 2x 5mg pred per day (which, by the way, I wouldn't describe as a very low dose of pred, very low is under 5mg)? And what were your very high doses of pred?

[FohFoh in reply to PMRpro]

40-50 mg per day for two years. The pain was horrific.

[PMRpro Ambassador in reply to FohFoh]

In that case - did your rheumy not consider that t might not be "just" PMR? One of the criteria for a PMR diagnosis is response to pred - and at doses well below that.

[123-go in reply to PMRpro]

Good point!

[FohFoh in reply to PMRpro]

No, he did not. Apparently, I was too dumb to ask, but I will now!

[PMRpro Ambassador in reply to FohFoh]

Why were you dumb? He was the professional who should have been aware.

[FohFoh in reply to PMRpro]

Well, when I first started prednisone in 2015, I responded to it right away. That’s why they zeroed in on the PMR. As time went on, they increased the prednisone then continued to increase as the pain elevated. I was silent for 2 years until other things started happening. Fractured pelvis, skin breakdown in awful, unmentionable places, teeth started falling out. I had spent my adult lifetime correcting my lack of dental care as a child and had a lovely set of crowns and a couple of bridges that were great until they fell out, one by one because osteo had taken over, and there was no longer sufficient bone for the teeth to hold on to. I’m currently learning how to wear a full set of dentures. They look great, but it’s one weird ride getting used to having a mouth full of marbles. Haha. Sorry, I digressed.

[PMRpro Ambassador in reply to FohFoh]

Mmmm - it might have been PMR, or what is called a polymyalgic onset of something else originally and, to be fair, it is easy to be confused by it. But the need for an ever increasing dose of pred should have rung alarm bells.

[S4ndy]

Hi FohFoh, sorry to hear you are suffering from PMR. I worked in Nursing homes and only ever met one person with PMR. She used to refuse to get up most days or join in any activities. I don't think any of us staff truely appreciated her condition.

When I was first diagnosed I was only 46 and at that time decided to do without prednisolone. Taking a concoction of drugs that, looking back, didn't really help. I went into remission after a couple of years or so I thought but then in 2016 it came back with a vengeance. I had no choice but to take prednisolone and I also had to give up work.

I have been on this forum since then and the help and advice on here is brilliant. You feel part of a community that really understands how you are feeling and how PMR can impact your life. So supportive and somewhere to turn to when things are getting you down. I am lucky to have excellent doctors too but value the real life knowledge of this community when it comes to the actual nitty gritty of dealing with chronically ill with a condition which can change daily!

I hope we see you here from time to time and please don't be afraid to moan, vent and ask difficult questions as I am sure you will get plenty of support here xxx

[FohFoh in reply to S4ndy]

Thank you S4ndy!

[Sharitone]

Hello, FohFoh! It's tough to feel a drag on your husband, particularly when it stops him doing things you would love to be doing yourself. But I guess he would rather have you there, sick as you are, than not at all. I hope you can get sensible doses of medication sorted out, because having even that little tiny bit of control can help with the mess. Best wishes!

[jinasc]

Just a quick question - have you are are you near a Mayo Clinic?

[FohFoh in reply to jinasc]

No, afraid not, but I’ve read several of their online articles.

[cycli]

Well FohFoh, I think you have a lot to think about now and as you can see from the responses much practical advice, We all share your feeling of loss and that can't be changed. Kendrew put it well and you will need to build a NEW normal. We all have and had to do this. Read my profile and you'll understand. welcome to a formidable forum with people who can really help emotionally as well as medically. You are no longer alone.

[Harbel]

Hi and welcome. Great people here, you have come to the right place. For my part I was like you with pain and now off steroids and pain free.