Ok. Been putting off writing because it's going to be long. Rheumy still hasn't gotten back to me on CT scan done July 6. Hips screaming. Shoulders tolerable. Why has she not? She is only in the clinic 1 day/week now. Next appt. She set for me is Oct. 3! This from their nursing line who advised me to call my pharmacist, not go to ER as they triage and handle things on emergent basis. She did "send a note" through to Rheumy. Brilliant!I call Pharmacist. She prescribed ketorolac. Strongest NSAID. Costs me $75 as not covered by pharmacare in Nova Scotia. Rx makes me sick so had to knock off that. Now trying T1s and Ibuprofen. Just took a flooding dose.
Here is my dilemma. Is this actually PMR where I have tried to get up and around and keep reinjuring the muscles in my hip area, upper arms and shoulders?? None of the NSAIDS are actually touching this pain except for a brief "window of opportunity". Muscles are definitely wasting. Shaking a lot, from weakness I think. But sometimes more like a tremor as difficult to get spoon to mouth without dropping the food. Messy!
How can I up my Pred when currently at 25 mg. Except perhaps a few days at 35 or 40 mg. to test my latest revelation?
I actually have managed to get an appointment with a Nurse Practitioner, Aug. 16, which will no doubt be useless at least in this instance. This through Virtual Care NS.
Scheduled to go on 2-3 day mini vacay with daughter and grands next week and I will go, even if they have to push me around in a wheelchair. They are willing. First time away in 2 years. The last time is when the PMR actually started. Nothing else but bed here and if I tell them to go without me....there go my caregivers. The Inn's beds are better than mine. I worked there about 12 years ago as housekeeping staff. One of my many hats throughout many careers. A nostalgic trip for me.
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Missus835
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so sorry to read this. I can understand your conflict because sorting out the cause of the pain has many possible answers. It seems that your medics don't fully appreciate how disabling this condition is for us and their laissez faire approach doesn't help. You are also on a high dose and the steroid induced myopathy is having its effect on you. Keep fighting.
Well that scares me as I just read up on it. It's definitely a laissez-faire approach. I'm on a high dose due to a GCA scare in January where they bumped me up to 60 mg. Pred. Still tapering from that. Stuck between a rock and a hard place. Thanks for your reply cycli.
Well I'm at 22.5 and trying very hard to taper. I can tell my muscles are not good but 4 weeks mostly in bed due to pain will do that. I would love to be able to walk a bit more and was just about to start when my back started acting up. We will get there. Hugs to you.
Yes m'dear it's a huge drag. 40 years ago the idiot who I was with threw me down a flight of stairs and I had a disc operation after lying in bed for a couple of months. In 1983 they believed bed rest was the answer. Then recovery time. Good news was he left while I was in hospital. I say that to say, I believe it was only the beginning of future back and body problems. So here we are today on bed rest. Ironic. If I had a decent Rheumy or an actual GP I bet I would have some answers by now. Shortage of doctors here in Nova Scotia. Cheers to you as well.🌹
Whether it's the shortage or lack of knowledge I can't be sure but I would hope there is some resolution for you. Your situation 40 years ago was unacceptable and deserving of some retribution for such an act. So sorry you had to suffer such. Highly likely cause. Same as my crash 6 years ago. Would be nice to have certainty of cause for PMR and GCA, but it still wouldn't change having to cope with it once one has them. Keep positive
I have no idea cause for PMR except it started and escalated within days of my two Covid jabs. I don't believe in coincidence. It is not genetic. Rheumy says "maybe you were just meant to get PMR". Ya right. Take care cycli. x
oh my golly gosh ! I read this from you yesterday and today Nova Scotia has made it on our international news , probably for the first time ever ! I do , hope you and family are safe and dry ! Please let us know you are all ok .
Safe we are. The city is pretty much under water. Cars and such floating away. The ground is saturated, so it would never hold all that rain. Worst or best lightning I've ever seen. Generally love storms. It will take a long time to dry up. This week is scheduled to be hot and sunny. Last month wild fires, this month floods, what's Universe got in store now? I keep thinking plague of mosquitos.
I would not rule that out ! Saw my first mosquito , this week , mid winter in NZ. Relieved to hear u and family on holiday all safe . Takes our mind off our moaning bones !
Same hereas we are 1000ft above sea level. glad all safe. Just had infusion zoledronate supposed to last 1 year. Should have seen rheumy but was at funeral of one of his patients. Hope that doesn't reflect on his diagnosis
Oh, dear Missus, here we are again. Maybe I have a wicked sense of humour, but I loved your cynicism about your forthcoming appt. Nothing that has happened to you inspires confidence in Our Wonderful Health Professionals (RTM). Still, this one might be different. I don't suppose you feel in the least like demanding anything but the one concrete thing I can think of is trying to make sure that on Aug 16 that Nurse Practitioner has the CT report in front of him/her. And absolutely stress the tremor. With luck you can get them investigating you for Parkinson's, which is a huge improvement on not investigating you at all. Enjoy your couple of days away down memory lane. So glad you're able to get out of the house for a bit. x
A sense of humour, wicked or not goes a long way. I will ensure they have all my reports and scans. Thank you for well wishes for our little trip. I know it's going to be difficult, but fun nonetheless. Xx
Our health system here in the UK seems to be failing too.
At least you got a second rheumy appointment set. At my one and only appointment the rheumy said "I'll see you again in three months" That was back in March and I've never heard a squeak since. Fortunately I feel very well and my pred dose is coming down nicely according to DL's 5 week taper which has been a life saver for me and which I'm still following to reduce at a rate of 0.5mg per 5 week cycle. The GP secretary rang me in June to set a GP phone consultation/medication review for 18th July, which went without a hitch and GP was very pleased with my progress, but when I mentioned to GP I had seen the rheumy back in March she didn't even know about it. She had made the referral for me in December when I was in a lot of pain from a flare but had never heard anything back from the hospital so thought they had rejected me as a patient and was very surprised when I told her I had been for a consultation as they usually communicate with each other by letter, but GP had never heard anything back from them at all - ever. Her secretary rang me later that day to say they were chasing up the letter but I haven't heard anything since.
Do you not find that your pain in shoulders and hips increases if you remain lying down in bed for too long? I found this to be very much the case and at the beginning was usually completely crippled at getting up time in the morning having lain there all night and unable to find a comfortable position or even to turn over without experiencing blinding agony in my shoulders and hips. I could barely dress myself at that point. But I found the pain and stiffness always eased off a good bit when I started to move around after getting up. Maybe this is what you need to do to stop from getting in to a self perpetuating spiral of decline..?? Maybe try to get out for a little walk and try to build up some lost muscle mass - very difficult and a daunting prospect at the start I know because I've been there, but my own experience tells me it works. Maybe try some VERY gentle arm exercises too if you can and gradually increase the difficulty/intensity if you find you start to improve.
I understand that the general consensus in dealing with PMR is to rest, but in my own case I've found if I rested too much it becomes rather self defeating and makes me feel even worse, and throughout my PMR Journey I have kept up determinedly with an exercise regime of some kind or other, even if it was only a little walk for a couple of hundred yards as it was back at the beginning when I had to fight through the pain and stiffness to achieve it. By sheer determination, will power, and a lot of pain with my body resisting me all the way, I have managed to build my body and my strength back up to at least one - and occasionally two if I feel well enough - light gym sessions per week, and a couple of cycles to the beach on my bike on different days (about 8 miles in total). I absolutely believe from my own experiences that we should all be able to do this to at least to a small extent to keep ourselves going regardless of age or level of PMR disability as the rewards of increased mobility and less pain are definitely there to be had if we fight for them. The problem lies in finding the fortitude to fight through the pain as your body resists you and demands in the form of increased pain that you stop, but it has worked for me and my recovery is ongoing. I still have stiffness and minor pain in the shoulders and hips at all times as well as occasional lower back pain, but stretching exercises help with all of that.
Initially at the very beginning when I was a complete wreck I lost almost 6 kilos of muscle mass over a period of about 3 months, but now, almost 20 months after diagnosis, and having dealt with a flare from reducing pred too fast, I have regained around 3 kilos of lost muscle and am functional, if not exactly to the extent that I was before PMR.
Good time to read your post !!In theory I know you are right . After about 8 years , I am old , tired , in more pain and unmotivated. I sadly discovered yesterday at the hospital what a really terrible state our medical has got to in New Zealand too . I think we could outdo UK and Nova Scotia. How did we get into this situation world wide .
I do know that I have to push myself harder - again!!!! It’s like self harm , all for the best tho I know .
I know what you mean about motivation. Pre PMR I used to compose and record music and make music videos - I could spend hours, days, weeks, and months doing it and take delight in the entire long process, but since PMR came along I've hung up my guitars, switched off my keyboards, and hardly ever touch any of them now. Perish the thought of sitting down to start a big recording project - that's something I still haven't been able to get back into and don't know if I ever will as the mojo seems to have gone.
In spite of what I wrote above, I still get tired a lot like so many of us do with this curse, and I put that down to adrenal insufficiency. I'm hopeful that scenario will right itself eventually as the steroid dose comes down further.
Onwards and upwards as they say. We have to try to stay positive to keep up the fight! 👍😀
I do hope you get your motivation back eventually for your music . Eventually we learn to live with our new life and find more relaxed , slower ways of enjoying the things we used to .
I know Flutterbies. Our ER is a matter of sitting after triage as they treat PMR as a pulled muscle or sore back. At least 3 to 4 hours andcanother wait. I've started bringing water and snacks. Then if you're lucky after 10 hours you might leave with a Rx not with them having addressed what you went in for. It is what it is. I have no GP. Other alternative is a walkin clinic, but they may not have access to our reports and scans. So kind of useless depending on the need. Will it ever be fixed? We need a new government. Trips to ER are expensive and a huge weight on the system.
Push harder will be our mantra. Not too hard though or DOMS might rear it's ugly head. Thank you for your reply and do enjoy your Sunday!
You are not wrong, nor right. I just fought my body all the way to the loo and now will fight it to the kitchen to make a coffee. Exercise is from living room to bedroom and back 3x with the rollator. I can stand about 5 mins. I am on second floor in building, so stairs are a huge issue. And then the shaking starts and I sit in the rollator to finish off what I'm trying to get done. It is a fight just for everyday tasks. I live alone. I fight into the tub on hands and knees and then out. Can't stand quite long enough to shower. But one must wash! I do light shoulder exercises and cycling is not an option. No bike. Gym either. Financial constraints. I have a whole body vibration machine though. It is a muscle mass builder which the astronauts use. 10 mins. on it is like an hour of exercise so one must go very easy at first. Which I will. If I want to eat, I have no option but to get off the bed. At this point I am having to face the pain as meds are not doing the trick. Keep fighting the good fight!
As for this rheumy, she should be seeing me like yesterday for follow up on a ct scan done July 6. There is no follow up or conversation she merely types notes into her computer. No discussion. She is the unreachable star. I have to go thru the assistant of my former neurologist to email questions to her, which she does not answer. If she wasn't the only game in town I would drop her like a hot potato. 3 months while all these changes are going on is unacceptable. I have no GP. Another fight. We are in agreement about fighting. Actually when lying on the bed, there is no pain hence the attraction I would say. Sitting on the bedside is do -able and then comes the race to get a sandwich made before low back gives out. Pelvis wants to go one way, spine the other. Sometimes it takes 3 goes to getter done.
I try not to look back at pre PMR as I was always active. This will return. I have always been a proponent of "what you can do, then do it".
Thanks for all your suggestions Borisomalley. I will take them to heart. Enjoy your Sunday m'friend!
I do not of course know the precise extent of Missus' symptoms but I think you were not 'completely crippled'. When I say PMR paralysed me I do not mean that little walks were difficult; I mean total absence of any motility in my hips meaning that I was urinating in the chair I sat in being unable to reach the commode about six inches away.
I'm wondering if you have ever taken enough Pred to be suffering the pain you have battled.
As I and others note you really don't have to do all this stuff to keep mobile and well. I do not consider myself in a self-perpetuating spiral of decline because I reject doing that which makes my already unhappy body more unhappy.
I can absolutely relate to being so near yet so far to the commode...just last week. I am all but crippled at this point. Did too much yesterday. Pulled a muscle in my back and right hip because I felt like perhaps I was not "doing enough". Tops of arms singing a tune so that makes using the rollator extremely difficult as they bare the weight the rigid hips cannot. I certainly don't lie on the bed because I want to. I loved your last paragraph, "I do not consider myself in a self-perpetuating state of decline" which is how borisomalley's post made me feel...totally inept and lacking any kind of self motivation. It is PMR and we all walk a slightly different walk. I have chosen to go with the flow because every day is different. At least, I am able to do more than I could a month ago when bedrest became the daily thing....even get to the loo. That is progress. Thank you for your reply.
Apologies. That's not what I meant at all but was relating to my own experiences. If I sit, stand or lie for too long I stiffen up and the pain in my legs and shoulders starts to return, and if I continue to be inactive it builds up in intensity over time. Driving is possibly the worst of all. I've found that with exercise it all improves dramatically.
Everyone is different and I guess I've just found my own way to deal with it.
"I absolutely believe from my own experiences that we should all be able to do this to at least to a small extent to keep ourselves going regardless of age or level of PMR disability as the rewards of increased mobility and less pain are definitely there to be had if we fight for them. The problem lies in finding the fortitude to fight through the pain as your body resists you and demands in the form of increased pain that you stop, but it has worked for me and my recovery is ongoing"
Possibly it worked for you - but I do know people who tried the same thing and it made them worse. It is the same approach as was touted for management of and recovery from ME/CFS and it resulted for many in worsening their state and some have never recovered.
Yes, we do emphasise rest - but NOT turning into a complete couch potato. Pacing and resting appropriately are what we say - and it varies from person to person. Pain is there for a reason - to warn of damage being done. Any trainer who tells people to push through the pain barrier is potentially causing more damage. To insinuate that people who listen to their bodies are lacking in determination or will power is unnacceptable.
I love my body. I am my body. We are all of a piece and need to work together here, it's not a separate entity. When it hurts to make a cup of tea (a spell with my hands) make a cup of tea is what you grit your teeth and do, but I find unpleasant the notion of injuring oneself, making a screaming body scream more.
Yes dear, mine is the shaking to make it and then get it to my mouth....that is if I can stand long enough to make it. This morning's pain is relentless.
I'm sorry Hidden disappeared because I wanted to share with them that my experience was like theirs in that I needed to move and when still, e.g. seated for even a few minutes it was very painful to stand up and move again, but after the first few steps I could manage. This was, however, with undiagnosed, untreated PMR. If pred doesn't help this, even with the elevated dosage that Missus is on, then the diagnosis does need to be reconsidered.
Hidden may be crying somewhere because their attempt to help was rejected rather forcefully.
True and I get that, but I attempted to do more after reading it, re-injuring a couple of muscles. When I get up....agony from the first step. It does not ease off, but continues to a shakey weakness. It is then that I sit in the rollator. Then back to bed. Rinse and repeat.
I wasn't suggesting you do this. I was commenting on the vanishing of a community member. Sorry, I should have been more clear.
Much as I appreciate the support I receive, the information I glean, etc., from social media, it has its limitations, especially not being able to read another person's body language, see the expression on their face, hear something in their voice. Even telephone is better than typing words.
I'll give you an example of how a telephone is better than the written word: I had to contact Moen to get parts for our kitchen faucet. I tried their on-line option, but it required a photo of my faucet. Because I don't really know how to use my phone to access websites I couldn't easily do this. So the following day I phoned. A rather brusque call centre person got some info from me and then told me I would have to send her a photo of my item. I said I was looking at a picture of it on my computer even as we were speaking. That wasn't good enough. So at that point I kind of lost it and more or less wailed (but not loudly) how difficult this all was - I'd already explained why I was phoning rather than using the on-line tool. Instantly she changed her tone. Became very helpful. I had the name of the faucet, she looked it up. She said it was in stock, she ordered the parts. It's free (covered by warranty as we are first owners). I thanked her and also thanked her for her kindness. It could have gone so much the other way. But something in my tone, quite unplanned, touched her in a way that typed words could not. I know this is a trivial little thing, not like physical pain, but it's kind of what I meant when I implied I wanted to reach out to this person who has left, and let her know that although her advice was not useful in this particular instance, I actually understood exactly what she meant.
Her user name is Borisomalley. I would also like to reach out to her as I know it was meant with good intention. I'm sure she just wanted to share that there is hope and used her story as an example. I would emphasize though that we each are at different places in our PMR walk. You are right about the difference between talking and texting. I took her words to heart, as I said I would. I hope she has not left the group.
Sadly, I am pretty sure that when the name reads "Hidden" it means they are gone. If they were still somewhere in HU, although not this community, I think their name would still be attached to posts or replies they had written.
I was a HE… and Hidden means they have left the forum/HU…
Incidentally some of us long term users have been asking HU to change Hidden to something less ambiguous… so people are aware that the person has actually gone, but they seem unwilling to do that.
I truly hope you have not left the forum. We know your posts were meant with good intentions. My apologies for making my words make you think otherwise. ~ Deb
No need for you to apologise, but as stated here and in many other posts over the years, one person’s experience of PMR and what activities they can attain is just that- their experience - and should not be used as a template for other members to follow. The problem is, sometimes people who have a relatively easy journey assume everyone does… it’s not true - your PMR experience is YOURS …. not anyone else’s.
Comments/advice from members on what they can do falls into different categories - sometimes it’s inspiring, sometimes it’s dispiriting, and sometimes [albeit rarely] it borders on dangerous…especially if they aren’t aware of other members’ health issues.
I hope that those following this thread did not miss the reference to a vibration board. I have one (cost about $80 at Amazon) and it does give an easy and pleasant workout, after which I feel much better. Also, I feel very bad for those of you with unavailable health systems. I have Medicare in the USA and can see my PCP usually within a week for almost anything at all and cost is zero. Our system works pretty well for old folks.
Our system used to be brilliant. Unfortunately they didn't keep up the supply of doctors. Specialists of course, but mostly GPs. Back in the 80s the premier of NS, who happened to be a doctor himself, declared we had plenty of doctors and actually cut the number that could be trained at our medical school. Just in time, as was obvious to even me back then, to create a shortage when a) boomers started to need more health care as they aged and b) boomer-generation doctors retired as they aged. Same with nurses, same with hospital beds. Always "just enough" rather than having any wiggle room, which was inevitably going to lead to shortages as the population grew and people got older. Then throw a plague into the picture, the increasing health effects of climate breakdown and you have a perfect recipe for disaster. I have been so lucky. I was without a decent doctor, and briefly no doctor, just about the time I developed PMR and would not wish that time on anyone.
In the days to which I refer I also lived for a couple of years in British Columbia and a year in Ontario. The Nova Scotia system worked better for us in those days, so I would bet that it was, briefly, one of the best systems in the world, because Canada as a whole was doing well, although the coverage then, as now, was incomplete, not including such basics as routine vision and dental care for adults.
I moved here from Ontario in 1981. Don't recall what it was like at that time because I was very healthy. Lived in Digby. That is where I met the GP who was my GP for 29 yrs. I had an allergy to something and my faced swelled up. He worked in hospital and had a private practice.But when I had my back operation in 1983, no hitches with the system at all. In hospital in Digby for weeks, then they transported me to Halifax. Had one of the best surgeons at the old Infirmary but I can never remember his name. Lol.
GP retired just as I was diagnosed with PMR which he said was just old age. I think he was 79, but it was time. I believe he still does bi-weekly appointments in Bear River, which is just outside of Digby. I should try to get an appointment down there. Probably easier.
I broke my leg literally within a few days of my longtime GP retiring! Later that year I started the PMR symptoms although the young doctor who had taken on some of his patients was totally useless. Thankfully she left and because we refused to follow her to Bedford suddenly we had no GP at the practice where we had been patients for about 40 years! Long story short, I did get a new doctor because of a very compassionate receptionist and agreeable doctor who wasn't actually accepting new patients. obviously I presented as a really desperate case!
As for you, I know you are joking about trying to see someone in Bear River, but maybe you should contact them if you can. You never know. He might be able to pull a few strings.
I was thinking the same thing about him pulling strings as he pulled one and that's how I was able to see the neurologist up here. Hence PMR diagnosis. Not so much kidding about BearRiver. Desperate people do desperate things. Lol.
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Update on rheumy appt 
To taper or not to taper, that is the question
