I have just been reading crochetgirl65 comments about resentment having PMR and can totally identify with this - it is one of my biggest problems, although I would like to say that it is also giving me strength to "speak up" for myself much much more !!! Can hardly recognise myself sometimes and not sure if this is a good thing or not!!!
I am currently yo-yoing between 8mg and 7mg, it seems such a mega tapering and has been getting me down a little, sleeping a huge amount through the day and generally only doing the bare minimum of jobs - someone told me yesterday how well I look and I forgot to say "It isnt my face that is the problem" Hey ho, thank goodness for this site, it is ALWAYS my 'go to' place and has a value that I am unable to put a price on!!! 🕊️🕊️🕊️
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UnicornDancer
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I was stuck at first - wondering what ruling had caused resentment (I can think of a few mind) and then I realised you meant overrule in the sense it is dominating ...
Have you ever thought of seeking counselling? We often do suggest it - loss of our previous life is as much a bereavement as a death causes.
Oops!! yes the two words needed to be a combined one, apologies!! Counselling has been helpful for me for other things and I am currently applying some of the strategies I learned - one of them being to 'speak out' and 'speak up.' Because I am often seen as the one to turn to when others have problems my own difficulties are marginalised and quite often dismissed as being of no account. HOWEVER, my new found adapted way of speaking up and sticking to what is GOOD FOR ME is having an effect - an example being only last night when I TOLD A FRIEND I was sticking to what is good for me and was not going to be told where to park my car because it was more convenient for her!!! I realise this is only a minor thing for many people but for me it was quite major - my friend shrugged her shoulders and said ok but I usually do what she suggests!!!! Hey Ho watch this space!!
Are you tapering ("yo-yoing") from 8 to 7mg? At those doses, it's an idea to do 0.5mg at a time and take weeks or months at each stage. I use the Dead Slow Nearly Stop (DSNS) taper and take several weeks to reduce by 0.5mg. You'll find details of tapers in 'Topics' or FAQs. As long as your PMR doesn't need more pred, this gradual reduction should allow your adrenal glands to adjust.
Thank you very much - I have always dropped 1mg rather than 0.5mg but will start this 0.5mg reduction straightaway - I will also print out the info as I find having a paper copy in front of me is invaluable!! Thank you again, as usual my 'go to' place has come up trumps!!
THANK YOU!! I have just printed out the first few pages - I like to have the paper copy in front of me - I have accessed the adrenal info before but so much info doesnt always sink in for me!! I was beginning to think I am turning into Rip Van Winkle with all this sleeping!!! Thank you again
I was interested to read your post...and your Bio too.
Like yourself, most of my life has been involved in teaching 'Early Years' children and I adored that age range. Such a joyful environment to work in.
I've had PMR for 4½yrs now and sadly I had to eventually take full medical retirement after three attempts to return to work following the initial emergence of the condition.
I understand completely that feeling of resentment. Resentment for all the things deemed 'lost', but as you touched on, being diagnosed with PMR has also opened up new channels of exploration and provided opportunities to experience things I'd never have previously considered entertaining.
Similarly, I've also always tended to be a 'Yes' person....often at my own expense..... but one thing I've learnt from living with PMR, is that I have to put myself first now, and if that means saying "No" to something or someone, then "No" it is.
Speaking up for yourself is always a good thing when it's protecting your vulnerabilities....whether that involves your physical health or mental health.
Frequently friends and family react in unsympathetic or insensitive ways to situations that emerge, and because I look okay, they assume I'm well.
It doesn't matter how many times I explain my health condition to them, they just don't 'get it'!
This used to really bother me and I used to feel that maybe I should exaggerate my 'ailments' in order to enable a more visible manifestation of my condition. Haha!... this didn't happen, as I almost immediately realised that the problem was theirs and not mine, and now I don't really care what people believe because I know that making decisions that are right for me, definitely result in a better outcome for me!
Well done on speaking up for yourself......and try not to dwell too much on what you feel you've lost..... instead, try and embrace all the new and different experiences & opportunities that will come along as a result of living with PMR.
Thank you so much - this is so kind of you to send such a lovely response. It is the team work side of things that I find so helpful and the feelings of togetherness on the site, it really has helped immeasurably. Yes people make judgements about me and my health all the time and I am finding the more I speak up the more looks of abject horror I receive when people realise the severity of PMR - all power to our elbow I say and thank you so much once again🙂👍👍🙂🙂🙂
Funny thing that I should be reading this and the phone rang from the doctor surgery. I've lost my way with all this atm, I have no idea whether how unwell I am feeling is due to pred, PMR or adrenals. I've been trying to get an appointment with the GP at the surgery who also happens to be a rheumatologist. I was unable again to make an appointment earlier this morning, even well in advance, for either the rheumatologist GP or anyone else. I have had to increase my dose of pred a few days ago as I felt so unwell and I am very fast turning into psycho woman again at the higher dose. So a mix of side effects from the meds, frustration at not being able to speak to anyone, feeling abandoned by rheumatology, anger at being ill and no-one to help, I burst into tears on the phone and had a mini rant, apologised and hung up. The phone rang a few minutes ago to say that an appointment had been found for me for 3.00 pm this afternoon, only (minor) downside is that I have to drive to the next town to see the guy I want to see at his other surgery. I'm now trying not to be too overwhelmed by the guilt and shame for my very uncharacteristic loss of dignity or to be gleeful about getting a result at last.
If I am reading your post right, I totally get the sense of overwhelm of having to adjust to a life changing chronic illness. There is definitely a grieving process that goes with this and I'm doing an awful job of it. I'm finding the systemic effects of the illness and the emotional effects of being ill harder to cope with than the pain and stiffness. I think it must help an awful lot if you have a supportive network around you and I would think that the folks who cope best probably have that. The difficulty with being ill can be not having the energy to be able to create the support for yourself and being ill can be very isolating, of itself. Trying to negotiate the healthcare system when you are unwell can also be tough.
"I'm now trying not to be too overwhelmed by the guilt and shame for my very uncharacteristic loss of dignity"
No - you were right to do it. Now they have got the message, I always say, DON'T dress up, don't bother with make-up, don't bounce in making it look as if you are having a good day. Make it obvious that even YOU are struggling. Because when you appear in your nines, that creates the image "this patient is coping well" and informs the rest of the consultation.
I think that printing out that post and handing it over would be a good start.
I doubt you are doing an awful job of coping - but it is hard when no-one cares. My husband NEVER got the hang of what PMR did to me, to be fair it wasn't his fault, he was "on the spectrum" and emotional and empathy didn't figure in his vocabulary! I remember a cousin actually telling him to hug me when I was lying in the ED having badly broken a leg!! To compensate I have had super doctors - but the Covid hiatus left me very alone at a time when I desperately wanted and needed support while he was dying. It was hell and it took a full year of counselling to get me back on an even keel mentally, and physically I'm only just getting there 18 months after a real meltdown of PMR and back muscles. YOU need to ask for bereavement counselling as much as I did - bereavement for the life you have lost. You probably won't get it back the same - but you will get a new life to settle into.
Let your guard down again and spill the beans. And ask for help.
Yesterday was a bit of a roller coaster, so only just managed to get back to this now.
That made my eyes leak again, thankyou for your kindness pmrpro. I appreciate it and agree with everything you say. I was just getting ready to see the doctor when I read your message. Anyway, I didn't need to put much effort into looking suitably miserable as I blubbed again when I walked into his office, so I think he got the message.
The outcome is that he has taken my care back from the rheumatology department. He didn't say as much, but I got the clear impression that he thought that I needed a lot more support and his other hat is consultant rheumatologist, aswell as being GP. He's a bit odd tbh, but the kind of odd that comes from being clever and he seems keen to get me feeling more well, so I can live with that. I get the impression that the receptionist must have told him that I had been upset and it looked like I had been added on at the end of his afternoon surgery when I got there. The place was deserted.
I got a bit of a telling off for messing with my meds and increasing my the pred, and he wants me to get back to what I was on before with a plan in place. When I told him how I have been feeling, he says that he does think that I do have PMR, but that there is something else going on and he wants to get to the bottom of it. That goes with what I have said all along that I felt that the PMR is only part of the story for me. So a tapering plan in place so that he can see what is going on, and he wants me to get in touch as soon as there is a re-emergence of PMR symptoms and he will call me, or if I have any concerns about how I am feeling or need advice. I've also got a long list of blood tests to be done when I get back to 5mg, and a review at the beginning of October before I go away.
I told him how hard I am finding my own day to day self care as I have been feeling so unwell and lack of support network and how difficult I find it to negotiate appointments when I feel ill and no-one else to help; that seems to have been taken on board.
Good - a good GP is always preferable to a poor rheumy even if it isn't their field so you probably now have the best of both worlds. And he IS good, because he recognised the need for an unlimited appointment.
Just read your bio again - you should have tried gimmepatience - because that IS what we need ...
And have you ever tried an exclusion diet? I would suggest a reactive arthritis but not sure that that reacts to viral infection, it is usually bacterial ones.
ha, patience has never been my finest attribute. Though lack of it is possibly what made me excel at my job.
I could write a book on my dietary investigations. I started with an exclusion diet after my IBS "diagnosis" and it wasn't very conclusive, apart from tomatoes. Though I did it myself a long time ago and may not have been the most scientific. Then someone at work was doing a project on fructose intolerance and when I started reading up about it, it described me exactly, so I tried FODMAPs. It was very clear that I am a fructose malabsorber, but didn't account for everything and I started to look at fructans aswell. That was when I gave up wheat. Coincidentally, the league table of grains for gluten content and free fructose is in the same order. It is possible that I am an undiagnosed celiac or non celiac gluten intolerant, but I tested negative for celiac diseases as I had already given up wheat when I was tested and I will never eat it again, as even small amounts make me too ill, and therefore I follow a gluten free diet. Though, the wheat thing seems to be an actual an allergy, but I can't tolerate rye and barley either. I can tolerate as much lactose as you would put in a cup of tea, but I avoid anything that has added whey. There is a school of thought that food intolerances are part of atopy. I think that a lot of that was masked because I have never eaten much in the way of processed foods. I mostly cooked from scratch and 95% of my weekly shop is single ingredient items.
The rheumy GP made a note of my suspicion that the flares may be associated with viral infections. He didn't say where he was going with that though. I have noticed that triad of skin, GI and musculoskeletal symptoms seem to turn up in a lot of chronic illnesses.
Well the coeliac expert in Durham when mine was being looked at would conclude you are either coeliac or gluten-sensitive on that evidence. I had the same problem. I had a dreadfully itchy rash that went away when I didn't eat wheat - I didn't at home, just pizza and pasta here in Italy brought it back. I was referred as query dermatitis herpetiformis and got a very nasty French dermy who refused to do a biopsy until I had eaten far more wheat than I EVER ate for 8 weeks, The coeliac guy said there was no point suffering as I had already worked out what worked for me - unless I was desperate for a prescription for gluten free stuff on the NHS which was all disgusting anyway. He also postulated a role for leaky gut - this was long before it became fashionable - and there is now suggestion it may be more generally involved in autoimmune disease.
I feel certain that all this must be linked, the atopy, dietary intolerances, possible celiac and the PMR. Plus, I am always on the borderline of hypothyroidic, just within the normal range. I had endometriosis very badly throughout my fertile years and a short while ago I read that you are something like 10 times more likely to get PMR. It seems clear that I must have had a lot of inflammation in my body throughout my life. My immune system went bonkers in 2019 and I ended up with severe respiratory infections and antibiotics five times, one time was pneumonia and another was some kind of strep throat thing where I had to liquidise all my food for about 3 weeks as I was unable to swallow. Then I got covid in Jan 2020, courtesy of a visitor from our Shanghai manufacturing facility, I suspect. I've not felt my self since. All that can't be coincidence. For the time being, I am focussing on trying to keep myself free of stress, eating well, avoiding inflammatory foods, getting as much exercise as I am capable of and hoping that my body will start to recover. Though having PTSD doesn't help with the pred as it sends my startle reflex off the scale. Reading that back, it is a bit of a littany. I'm doomed.
What's that bit about endometriosis? I probably had it - both daughters have it. I also had ME in the days when it was still yuppy flu. HRT helped that a lot - and PMR appeared a few months after stopping the HRT after one scare too many - a flase one as it turned out.
Yes, PMR, long covid and some mysterious something else that rheumy GP wants to get to the bottom of. A heady mix! Positive me is compartmentalising the thought that the something else could be something worse than PMR and ignoring it. I'll let him worry about that for now.
I don't remember where I saw that about endometriosis, but it came up when I googled possibility of endometriois being autoimmune a few weeks ago. I've always felt that it might eventually be found to be autoimmune, especially when the extent of disease does not necessarily correlate to the severity of symptoms, so it makes me ask why those women who suffer most would be different.
Anyway, I just asked if endometriosis is associated with PMR and this article about fybromyalgia came up and if you scroll down, it starts to talk about an association with autoimmune conditions. medicalnewstoday.com/articl...
The article links to this paper, which is not conclusive, but I think you might find the commentary interesting. academic.oup.com/humupd/art...
That doesn't really answer the question, but it gives an idea of where it might head. I'll see if I can recreate the original search that I did and find it.
Interesting..I had what my gyno said was one of the worst cases of endometriosis he had seen when he did my partial hysterectomy at age 38..I am 55 now. I ate ibuprofen like candy back then, and of course now have diverticulitis (thankfully only have had one acute attack - over a year ago. 90% chance it came from all of the NSAIDS over 35 years.
Sorry you had to go through that. The pain really is awful and the pain from my PMR is a walk in the park compared with my endometriosis pain. I was lucky in that I always had private medical insurance via my jobs, and I somehow managed to avoid a hysterectomy and continuous analgesia by having a number of laparoscopies with laser treatment that kept me pain free for a while in between before it all started to kick off again.
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