Reading loads of threads here, I notice some stuff that doesn't necessarily get included in the PMR symptoms, but that many have commented on in the lead up to diagnosis:
The loooong hot shower.
It was the only thing that got me going of a morning. I see that many here discovered this delight fairly early. Plus heat pads for sore muscles. Oh and wine, purely for its vasodilatory effects of course! (Not in the morning! I would wait til at least 4pm, but I honestly viewed it as medicine.)
The afternoon dip.
Lethargy always hit me around 3pm (it didn't creep on, it enveloped me with sinister haste) I'd be cold to my marrow, and wrap myself in blankets and heat pads and usually sleep for an hour or two. At night obviously there were the heated moments (no not THAT kind of heated moment!!) I refer to the sweats and flinging off and on of the duvet a dozen times a night. While hubby snuggled like a bug in a rug under his winter weight duvet because I insisted on having the windows open.
The born again feminist.
(Sorry guys, probably can't include you in this one). I didn't get round to burning my bra, but doing it up or undoing it were impossibilities, so moved to the sport bra type. However, the strap seemed to coincide with ribby pain, and I soon abandoned them altogether. I've now brought a bigger size, and mostly they're ok, but will happily remove it in favour of slouch-wear of an evening.
The porridge walk.
What is that walk? Flat footed, despite no ankle pain there was not a natural flow of movement. Stride was noticeably shortened, like I was wearing too tight a skirt. Plod, plod, waddle, plod! and I think I caught my arms in my belt as well, as arms really only wanted to work from the elbows down. Oh yes, I chipped loads of crockery trying to put it away on moderately high shelves!
So maybe if we have a friend who takes far too long in the bathroom of a morning, can't make a morning appointment, has to leave in the afternoon to have a kip, is imbibing by late afternoon, has thrown her undergarments away, has chipped all her dinner plates, and walks a bit like Spotty Dog (from The Woodentops) we might consider she has PMR, and check her/him for bilateral shoulder & hip pain and stiffness that the medics think sums up this disorder.
Would you agree?
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Soraya_PMR
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Absolutely I agree, have all those problems right now!.......plus all the usual while trying to lower....not a good day.😕.....hopefully tomorrow things will ease......
I can sooo relate to all those things. Before the wonder of prednisolone getting dried after a shower and dressing was a nightmare. In spite of side effects of Pred I love the relief it gives me from pain most of the time.
Because it was GCA, virtually everything from waist up. Took 10 mins to turn over in bed at night, which was a right experience as both shoulders were painful to lay on and no strength to lever myself over. Another 10mins to actually get out of bed.
Had to get hubby to fasten and undo bra (he was always better at one but not the other - TMI sorry!)
Washing and drying hair a nightmare, tears (of pain and frustration) every time.
Plus, because a frozen shoulder diagnosed, being told at virtually every doctors appointment -“ you’ll wake up one morning, and it will be gone!” Urghhhh - no it flaming wasn’t!
Plus all those mentioned by Soraya - apart from the waddle! Small mercies I guess 🤔
I can relate to that. My experience wasn't as bad, but it was getting close by time of diagnosis. I still can't find humour in those days, although Soraya's account made me chuckle. The girl who lived next door remarked to her mother that I must have bad arthritis, simply from watching how I had to haul myself up the front steps of my house.
No, it’s not an experience anyone would want to go through again. Nor would I wish it upon my worst enemy - even if I had one!
That’s why, although lots of people complain about Pred, I don’t see it as “the evil drug”. It gave me back my life, and also stopped me going completely blind.
DorsetLady - Frozen shoulder. Nasty. Physiotherapy and cryotherapy. My physio has just dealt with a friend's horrific frozen shoulder. GP said 'three years'. He did it in 9 months ! Has to be rigorous, and lots of work at home plus the cryotherapy. But, only as correctly directed by the physio. Sadly, not all physios are upto dealing with frozen shoulder ! It is a horror.
I’m sure it is, the trouble I didn’t have it, it was GCA all the time, so went through a lot of physio that probably ended up doing more harm than good in the circumstances😰.
oh don't remind me of the hair drying - it has cost me a fortune to get mine blowdried cos even on the Pred I didn't have the strength and would end up in a worse state of pain if I tried to do my own hair - (I have very difficult hair!).
My husband said he had never heard me swear as much as I did while I was asleep when I was at my worst with PMR. If I tried to turn over, ooft 🙄 sweary words and woke myself up. Actually trained myself to sleep on my back with extra pillows under my shoulders because lying flat on my back was as much agony as trying to lie on my side, felt like I being pulled apart. Thank you Pred for the relief from that....
Don't think I swore at night - my prissy husband would have woken me up to tell me - but I certainly had a colourful vocabulary during the day. And it returns every time I'm having even a minor flare!
Oh no - we've had discussions on the forums in the past about being potty-mouthed. Of course, now there is evidence that it is a sign of us having a better command than others of language and vocabulary in general. And there is proof that a good swear is good for pain-relief.
The real plus there being - no drug side effects!!!!
The irony is that I don't usually swear (very much) 😉when I'm awake "not in front of the grandchildren" but pre-pred when I was feeling at my worst I could swear like a trooper. Every movement seemed to turn the air blue. Now I know it was for pain relief! 😂😂 Thanks PMRpro
Two frozen shoulders that required surgery think this was the beginning of PMR. Dreaded going to bed as I was better at night and knew that when I woke would literally have to lift my head up of the pillow thank god for pred
Crikey!! In retrospect do you think they were genuinely frozen shoulders? Or PMR.? Bit drastic that you endured two surgeries potentially unnecessarily.
Due to slipped discs since the mid 90’s, I invested in a water bed, and along with regular chiropractic and some spinal procedures I kept going. People usually respond a bit “ooh-err!” if I mention I have a waterbed, but I think it’s paid dividends during PMR. Because of full body support, turning over during the night is much reduced. I did get some hip pains if I laid on my side, and turning over had started to wake me up as I puzzled how to achieve it. But really I don’t think I suffered too much in this respect. Since the back issue I had developed my own weird way of rolling out of bed, and this is still working for me. From the bed to the loo? Well I was back to porridge-walking for that!
Had first frozen shoulder 5 years ago they did manipulation. Then four years later neck pain and shoulder pain on other side some phyisio then diagnosed another frozen shoulder. After op physio but did not respond as well as last time. Aching all over for few months then could hardly get out of bed or up from a chair. Was lucky was diagnosed fairly quickly
Just a thought - bra extenders can be purchased - either in haberdashery or online - saves a bit of cash!
haha yes one of my first PMR symptoms was I cannot put my arms around my back to put on my bra. what is going on? I could put my arm around there yesterday. I don't bother to wear one now around the house, but do when I go out. Bought a much softer one and no wire. Now have to clip it at the front and twist it around. One arm is bigger than the other now, so gone are the tight sleeved clothes.
I relate to all this. If ever I get worried about pred I remind myself of what it was like without it.
Regarding the hot shower, one memorable morning, when I thought the stiffness had reduced a bit, I decided to have a long soak with epsom salts for a change. I practised getting in and out of the bath a few times and managed it reasonably well. I got in, soaked for a long time topping up with hot water - pure luxury, felt relaxed and wonderful. Then I tried to get out - suffice it to say it took me nearly 30 minutes. Of course, I hadn't taken my mobile phone with me and just out of habit I'd bolted the door, although I was alone. In the end, close to total panic, I just had to break through the pain and force myself to get out. The rest of the day was one of the worst I've experienced. No more baths for me until I was on pred.
Oh you poor thing! I bath rarely now and only if hubby is at home.
Many moons ago I nursed a lady who had been stuck in her bath for more than two days!!! I’ve never forgotten her, she was eventually rescued by paramedics when the neighbours heard knocking on their wall!
Moving from nursing to discharging from hospital, I always tried to ensure the ‘frail’ had an emergency bell installed in their bathrooms. It’s the room with the highest incidence of falls due to all the water and soap.
I only shower now - got stuck too often. Drain water, somehoe turn over on to knees,then lever up ! Even got stuck in hospital once - HaHa, bare bum an all, gave the nurse attending a good larf <LOL> But, showers from then on.
I wrote a reply to your post late last night Soraya and am puzzled to find that it is not here today. I wonder what I did or didn't do?
I was just nodding in recognition at your description of the lesser described symptoms. I also recommended a Marks and Spencer's lace Bralet that has solved my problem with bra discomfort. It is cobweb light with a bit of stretch and just enough support ( comes in copper, good colour). Perhaps this will disappear because I am advertising something?
I always fastened it that way. PMR meant I also had to UN-fasten it in front. Could no longer get my hands up there in back to pop the hooks. Since prednisone, back to unhooking my usual way.
SorayaPMR,your post is so good to read,all the various symptoms of PMR that one has to endure and not always realising exactly why these things are happening.l also find it so hard to find a bra that fits comfortably,even with bra extensions l eventually have to undo it as it causes too much pressure around my chest.As for walking l also seem to be plodding along and sometimes feel like a waddling duck.Climing on a chair is impossible and l cannot bend my legs enough to sit down in the bath so can only use the shower.All the best Soraya,keep plodding on...
Brilliant post!! The bra description was so true. I have struggled to find a comfortable bra that gives me some kind of shape. Sports bras are ok but like you the elastic seems to hit the ribs, so by the evening I can’t wait to rip it off and sag happily for the rest of the evening. So attractive!! The rib pain seems to be constant and I haven’t read on here or in any other area what can be done to ease the discomfort. Anyone got any ideas?
My rib pain is due to myofascial pain syndrome affecting the pair of trigger points that is at rib level and resulting in irritation of the nerves roundinto the ribs. Manual mobilisation of the trigger points helps.
And maybe you need a trip to the NE of England and one of the Sadie the Bra Lady shops. You may find a bra that doesn't hurt because it is the correct size!
I was interested to read about the porridge style of walking. Sometimes I feel as though my legs have a life of their own and they are swinging out in different directions and as for the calf muscles!! They will become rock hard and painful and it won’t go away until I stop walking. It’s so good to hear that it’s not just me. Please keep sharing all of you. It’s such a comfort.
There was always a query over my PMR diagnosis because compared to some it was (is? still on 1 mg/half mg? alt.days) a mild version.. But in my mind "If it looks like a duck and quacks like a duck."....and yes it certainly waddled like a duck.
Besides the agony of hair drying, bra fastening, and the waddle, I found that putting socks on was a comedy most days. Between the PMR, the side effects from prednisone, nerve damage in my lower back, and tearing up my knee about a year and a half ago, there are days that it's a wonder I move at all except for sheer determination. I refuse to let all of this change my life severely. I am too hard headed for that. 😊
I associate my walking to having been on a horse for a month.
I, too, have been held hostage by a bathtub. First day home from hysterectomy and I just wanted a long soak in my deep claw-footed tub. Enjoyed soak only to find out that those cut muscles weren’t going to let me get out without some work. After a couple of hours of letting cooled water out so I could add additional hot water, I figured out a flip so I could get on my knees and then somehow got myself out. Now when I think of that surgery, that bathtub chirps up with, “Hey, remember me?”
Yes to all you've said. I have the robotic upper body movement. First problem was I couldn't cross my arms over to peel off a jumper over my head as excrtiating . I'm and off step step stool in the kitchen to reach anything. Warm showers lush... showering and drying my back a challenge. Putting on a new even doing the whole back to front and twist round is agony so I have given up wearing one. I can just about get away with this except if its cold. Lol!
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Heat pads to relieve pain.
Follow up with the doctor. Markers down but still in pain 
Is this a start of a flare
Pmr and Spanx dont mix!!
It's not going well and I am feeling low.
