What Is Stable? Predicting Tomorrow?
Posted , 13 users are following.
when I first contracted pmr it was a bit akin to falling off a cliff and bouncing on the way down, never sure what the next impact would bring.
When it became apparent that it wasn't going to go away of its own accord. When it became apparent that it wasn't a trapped nerve. In the absence of any likely medical assistance for the following few months I changed what I was doing. We still had 8,000 km to drive which was difficult to avoid. But we could travel less each day. Less sight seeing. More rest. More local transport less walking. No cooking or dish washing (a terrible impost). Certainly no spontaneous walks up steep mountains.
Trivial essential maintenance became major chores.
A minor diversion to discover that gentle massage, which normally brings relief to aching muscles, cost a couple of days of increased pain. This is serious!
Thus, after for 4 months, I was stable. I could reasonably predict from today's activities how I would feel tomorrow. By trial and error I recognised what aggravated my condition. What I should avoid. And most importantly how much I could do of the things which made it worse but I couldn't avoid.
I've always worked on the basis that if I can make predictions I understand sufficient to have some control. I wasn't getting better, but at least I wasn't getting worse. Stable.
Once diagnosed and treatment with pred commenced a new roller coaster began. I was no longer traveling. I was settling back to life at home. An overgrown, oversized, garden. A truck to rebuild. No routine.
But none of that could start until I was ready.
The combined effect of changed situation and pred meant a new roller coaster. A change in the course of the pmr. What had been stable was no longer. A rather frightening experience as I wondered what new symptom would arrive with a new day. The pain was gone, a little stiffness remained, but replaced by a chasm of uncertainty, and constantly changing symptoms added to the underlying stiffness..The advent of wall staring fatigue, which I'd not recognised while traveling (the schedule wouldn't allow), was particularly debilitating. Certainly not prepared for the mind altering effects of pred that besieged me.
Unable to decipher what was pmr, what was pred side effect, what may be something unrelated but serious. Frequent trips to the doctor to check. Almost a loss of objectivity, at least a concern at the possibility.
I could no longer make reliable predictions about tomorrow.
Pacing helped. A different way of looking at the things I'd stopped doing. I could slowly experiment. Doing things more slowly. Doing a bit and stopping, to carry on again tomorrow. Finding different ways to do things. I no longer had the routine pressure of having to drive each day, I could take my time.
Three years on I'm reasonably stable. I know that if I haul on spanners too often for too long it can take a couple of months for stiffness and pain in my hands to subside. A rowing machine requires great caution. Stationery bicycle is ok as long as I do some every couple of days. I know I can walk a few km over steep hills and recover within a couple of days. Chain sawing a large palm tree can be done in a couple of hours, but needs about three weeks until the next one. Cutting the grass with the ride on mower has no after effect. Whipper snippering happens over a couple of days, surprisingly with no after effects. I nervously embarked on a couple of months traveling in the truck - with no misadventures. I've decided to give fishing a miss.
I do sometimes wonder why I have a chainsaw. The truck (motorhome) is much more useful.
Over the three years the pred dose has been reduced to 3mg/day. A very slow process that can't be hurried. A few minor flares, under control within a couple of months.
So here I am. Stable. A belief that the pmr is slowly fading, reinforced by being able to reduce the pred.
Most importantly for me, and the starting point for making this post, I can reasonably predict what I can do for the next few days based on what I've been doing and how I feel. Though I still get it wrong occasionally, and I continue to experiment to find out where the boundaries are.
Its taken me a long time to figure out that rather than just pacing myself I predict the effect of any activity on my next day.
Perhaps wishful thinking, but I also have a sense that the course of pmr has a beginning, a middle, and, hopefully, and end,
The change in my life due to pmr has been significant. Some change has been simply a result of growing older - the older I am the faster I age. Either way there are things I can no longer contemplate doing. But the forced changes of pmr arrived suddenly, and unexpectedly - I think I manage well, but I'd much rather not have to..
At the end of the day I can accept "stable". But I'd prefer a slightly faster improvement.
4 likes, 45 replies
Silver49 julian.
Posted
I can relate to much of what you have written aside from the physical exercise which you undertook. I started 2.5mgs yesterday and can plan more and expect to fulfill the plans. "Stable" it is and it is far better than it was a year ago. I can live with this even though I would prefer to have the stamina and energy I had before PMR. Onwards and upwards, Julian.
Reeceregan julian.
Posted
Julian you took the words right out of my mouth. I have only been diagnosed with PMR and GCA 8 weeks ago, after months of slow onset of nearly every symptom without linking them to any one disease. Luckily by the time I stopped "diagnosing" myself and sort my GP's help he instigated 50mg prednisone which I'm still on indefinitely due to the severity of my symptoms. The shock to the mind and body has been acute. From a fit and active yoga, Pilates and dance enthusiast, about to retire 62 y.o. with our plans of travelling far and wide in our large RV which we love, to being grounded with such acute debilitating pain and limited mobility (I'm now on a walking stick some days)...has shattered me as well as my adored husband and I feel so sad that not only has this affected my life but his as well. On saying that, I am by nature a very positive and independent person, and will fight this with everything I've got. I just have to learn as you did, that I have to pace myself, and know ahead of time what I can do today will affect the next few days. It's certainly going to be a journey, and I'm not keen on the high dose cortisone which I look to be on long term at this stage as it's not having as great an effect as it should, due to how bad my symptoms were to start with. I am improving though, I have mobility (and a disability parking sticker so I can drive on a good day👏
so I'm grateful for any progress at this early stage. Your comments have been very helpful, I now realise I can't be a bull at a gate with this, and it will take some working out each day beforehand what I should attempt, and how long it will take me to recuperate afterwards. Bless you and all the best as we fight onwards 💪💪
Anhaga Reeceregan
Posted
I'm shocked you were put on such a high dose, unless you have GCA, because one of the diagnostic tools is good response to a low to moderate (15-25 mg) dose of pred. If you are still in pain, and at a high dose which is not a good idea, your doctor should be considering that it's something else (differential diagnosis) or that you have more going on that just PMR. To put things in perspective, many of us are virtually disabled by the time we get diagnosed,* and yet 15 mg more often than not is enough to sort us out. Sometimes it takes a little longer, or a little more as people metabolize prd differently, but I think 50 mg long term and still inadequate for you sounds like you need further investigation.
* Like Julian I described my feelings as having "fallen off a cliff" when I presented myself in despair to the duty doctor.
Reeceregan Anhaga
Posted
I was and still am shocked at my 50mg dose. I don't like the side effects that can result from this medication but my options were limited. I do have GCA as well, with ALL the symptoms, although they have all but disappeared as soon as I started the pred after seeing my GP. Not so much the PMR symptoms, I still have really painful days where I can't walk by the afternoon, and my frozen shoulders still give me a lot of grief. I also have nerve damage in my arms from elbow to shoulder but all that is improving slowly. My inflammation level was 53, and my original GP dose was a 5 day course on pred, with the first 3 days on 50mg, the next 2 days reduced to 25mg...the idea being to confirm the PMR diagnosis. Apparently if it's PMR it will flare back up straight away. It did. With a vengeance, within 24 hours, so back on the high dose until I could get in to the rheumatologist which was a 6 week wait. My first visit with him was only 11th July and it's been a whirlwind of eye specialists, vascular surgeons and biopsy, then sore temple and stitches out. Second rheumatologist appointment is actually today, so I will learn what my prognosis is and treatment moving forward in a few hours. Can't wait (she says tongue in cheek😏
. I have the utmost faith in my GP who is my age(62) and has Parkinson's and his daughter has Lupus so he knew straight away what was going on. He didn't muck around thank goodness.
Anhaga Reeceregan
Posted
On the other hand I do know a few people with GCA will go to 60 mg and rarely as high as 80. But CCA is a different animal, although related, to PMR and I hope that someone with more knowledge of that condition will post here with advice for you.
Diana112 Reeceregan
Posted
Where GCA is diagnosed it is not unusual for the starting dose to be as high as 60mg so 50mg may not be sufficient. It is essential to get the condition under control as far as possible and it doesn't sound as if that is the case. The damage caused by the inflammation in PMR & GCA can be long lasting and permanent if not dealt with.
FlipDover_Aust Reeceregan
Posted
HI Reeceregan (I'm guessing grandchildren's names? lol)
I just want to say something about traveling in an RV and having PMR.
I have a very large (and luxurious) caravan. I have found that travelling, with pacing, can actually be easier than staying at home - with some conditions.
You can't do all the set up and pack up but you can 'help'. I did the inside (pink jobs). I took as long as I needed. I never made the bed! lol
You will need a decent step and a handle to help you get in and out of the RV. He may have to help you some days.
Don't drive too much in one day.
Don't drive every day. Drive one day, stop for two (at least)
Make sure you have in inside loo! (or a bucket with a lid)
The best thing about travelling while you have PMR is you rest a lot more than you would at home.
You can sit down and read a book at 8am without guilt because you are on 'holiday'.
You can nap during the day.
There's no housework to speak of.
You can walk a little or a lot - depending on what kind of day you are having.
You are getting out and looking at things, not sitting at home thinking about how sick you are and worrying about stuff.
You don't have to explain to anyone why you can't see them or why you cancel plans at the last minute.
I would encourage you to reconsider putting those plans on hold. Don't let the PMR/GCA mongrels stop you!
Flip
Reeceregan FlipDover_Aust
Posted
Hahah..almost, they are two of my children...couldn't fit in all 5. Certainly not all 8 grandies! Your advice is wonderful thank you, we won't be giving up on the travelling, just delayed a bit for the big trips till I'm not so dependent on drs visits and bloods and scans. Our RV is self contained, we just drive, park up and relax, not much setting up or pulling down. Husband connects the water, electricity, and puts out the table and chairs and that's it. It has the grab rail at the step, although the step could be a bit lower, it has an ensuite, toilet, even a washing machine, I'm so lucky. My husband has classic motor bikes and we often attend away rallies and actually had one in Tamworth last week. I had the biopsy In hospital 6am in the morning, was discharged at 11, drove home, hopped in the Rv and drove to Tamworth for the next 5 days, then back to get the stitches out and see the GP the next day. I don't like missing an opportunity. I used to go riding as well, but I'm afraid that has stopped now. But you are right, it was SSSOOO relaxing, I did nothing except sleep, eat, a tiny bit of walking if able and not much else. Forced rest is what I needed because the prednisone gives me a false sense of energy/ability and I find it hard to realise that I'm not really as good as I think I am. I'm impatient to heal and to have to hand the power over to this GCA/PMR does that bode well!
Reeceregan Diana112
Posted
Yes, that's the opinion of the GP and the specialist as well, that it is imperative to control the GCA in particular as well as the PMR before permanent damage. So far they both feel I will get better in a few years but neither are saying I'm out of the woods yet as far as damage goes,as it's too early to tell. On saying all of that, after seeing the rheumatologist today, he is reducing the dose to 37.5mg for the next two weeks while monitoring for increase in symptoms, and added aspirin. HStraight back up if I flare. The other issue I have is that I lost 9 kls in a matter of months right at the beginning, but I was only 49 kls so I am now 40 .5 kls. There is nothing of me so I have no "substance" to fight with. I am eating now which I couldn't do in the beginning, and I've stopped losing weight, but I need to build back up so I can fight this thing. Slowly...slowly....💪
Reeceregan Anhaga
Posted
I haven't found anything yet that makes me feel better to be honest. I wake up each morning, usually after a sleepless night tossing and turning with aching arms and shoulders, but I usually only have a mild degree of pain at that time, ( I'm never totally pain free) so as soon as my feet hit the ground I'm good to go as if normal. I have always had a high pain tolerance, which I now know is NOT good...by the time you realise your in trouble that you can't handle you're REALLY in trouble😩. However as the day wears on I slow right down, and you can guarantee that by mid afternoon I'm starting to get stronger hip/back/buttock/leg pain. By dinner time I'm usually on the walking stick. Sometimes I'm on it at lunchtime. This would be more often than not, but some days I'm quite fine.
julian. FlipDover_Aust
Posted
good summary of RV Flip.
We tend to "free camp" in the truck, lots of solar and water, everything we need.
Recent couple of months included the month crossing the Simpson (desert). Moved and camped when we felt like it.
For Reeceregan .... simple concept is discover how to manage life in response to pmr, a bit of patience, and the assumption everything is possible. Harder than it saying it of course but don't let that get in the way. Sounds like you've already realised it.
julian.
Posted
Reeceregan julian.
Posted
EileenH Reeceregan
Posted
We're in Europe so our RVing is very posh (OH isn't a roughing it kind of guy) and setting up/putting away is a very easy process. But like Flip both of us like being away with the van even when we aren't too well - me especially since we eat out more often than not! I hate cooking...
But we don't feel a desperate need to go far if we aren't up to it - and while David is having radiotherapy we are intending taking the van to a site closer to the radiotherapy unit (in a town a good hour's drive from here) so the daily treck is much shorter and it will leave 2/3 of the day for "holiday inactivities". Otherwise my aim is to drive for not more than 3 hours maximum when we are heading somewhere specific - and spend the rest of the day parked up. If it is a really nice place, 2 nights is accepted happily.
Reeceregan EileenH
Posted
We often say " lets just get in and go" , even if it's just reasonably close and only for the weekend, it's kept all set up to do just that....only we haven't "done just that" yet due to both of us being so involved Andrew hands on in our very full on an specialised electrical contracting business. Now that we have retired we intend to NOW "do just that" ...and I'll be blowed if I'll let this stop me. 🚌🚌
EileenH Reeceregan
Posted
We already ARE retired - but I can't get him indoors to "just get in and go"! I'd rather go somewhere for 2 or 3 days - he wants to be settled somewhere for a week or two. And if he thinks it might rain, even a light shower - forget it! Though we were away a few weeks ago and it didn't rain despite the forecast until the morning we left - so he discovered it wasn't as bad as he thought...
FlipDover_Aust Reeceregan
Posted
We could be twins! I rode bikes until this beast hit me. Mr Flip still has two in the shed.
We have a 22"6 Lotus caravan with ALL the bells and whistles. It's like a 3 roomed apartment - on wheels.
I spent 3 days in Tamworth less than a month ago - we went out to Nundle to the woollen mills as I'm a bit of a knitter (something I took up again when I got PMR and couldn't do much else).
FlipDover_Aust julian.
Posted
We are free campers too. I hate caravan parks. We only go in there to fill up the water tanks and charge the batteries on the devices! lol Sometimes we use the washing machines as ours is pretty small and I don't keep on top of the washing. lol
Reeceregan FlipDover_Aust
Posted
That's crazy😂😂. And I was also a furious knitter years ago, back in the day when the beautiful baby layettes were the rage, and the knitted baby shawls. I found I finished those much quicker than ladies and gents jumpers...I loose interest if it takes too long. A bit like this monster I'm faced with now, it's been 8 weeks too long...I want to be better by now😜😜😂😂
Reeceregan EileenH
Posted
That's why we love our RV, it's all set ready packed with clothes, good etc...we only have to drive off and stop somewhere, even overnight.
EileenH FlipDover_Aust
Posted
julian. EileenH
Posted
the trip I refer to occasionally (during which poly arrived) was 3 years from Malaysia to Europe and back (34 countries). Free camped most of the way, but very different country to country. We got lost in northern Italy in October trying to travel east west from Cortina through the mountains.
But they are rather nice.
Italy was a bit closed so we got to camp where we felt like. Being young and silly we counted the tornante .... one tornante, two tornante, three tornante, more .... just like potatoes. 33 to the top of Paso Pordoi where we had the ski area to ourselves. The truck is heated!
Lake Como is north south, like lots of the roads, so got in the way of our progress a bit.
Part of dream was to park motorhome beside Tour de France route and sit on the roof drinking champagne with bread and cheese. Not to be, had to do some maintenance and timing was wrong - they wouldn't rearrange it for us.
Enjoying ourselves back in Aus now, trips of a few months because of the distances. Though in a couple of weeks we'll have a look at Fraser Island (very big sand island) a day's drive north. Its a fascinating country, very different to most other places.
There aren't enough days in a lifetime to see everything. If we couldn't make use of the truck we'd be a bit lost.
EileenH julian.
Posted
On your way up Pordoi you were about 3/4 hour from me! How did you get lost out of Cortina? There are only 3 roads!!!! And yes - they ARE rather nice
We did a mini-eastern Oz trip some years ago and I may be over next May for the next OMERACT conference in Terrigal (if they let me go again). Nearly said spring - but it's autumn isn't it!!! How far is a day's drive with an RV?
julian. EileenH
Posted
weeeelllll, we really never get lost. Just not quite in the preferred direction. The nice bit is it doesn't matter.
Cable car at Paso Di Falzarego was closed, we'd been up it previously and it was a crystal clear (if somewhat cold) day.
Memorable episode in China when we didn't see the Chinese gps (satnav) recalculate and nervous guide eventually said "you probably need to know that we may not be as lost as you think we are" ... which translated meant "we're lost".
How far depends on the roads. 600km is a long day for us. Two long days and we need three days rest. Brisbane - Terrigal is about 900 km on good roads, usually about a day and a half on our way to Canberra.
Had a couple of long days in the desert. Total 10 hours at 16.5km/hr average to pick up a part for fellow travellers.
Preferred pattern is 3-4 hours drive in the morning then stop.
There's a road sign on the motorway a few km from us which includes "Darwin 3437 km". Just another roadsign. I chuckle when gps says "turn left in 727 km" or somesuch.
EileenH julian.
Posted
The Falzarego cable car is only open during the ski season, July and August. And even then you can drive all the way up - and it's closed because of "weather". It's happened to me. I was keen to ski the Hidden Valley, was assured at La Villa it was open so bought the more expensive ticket. Bah!!!! Never did do it.
julian. EileenH
Posted
'97 with our children we went up in the cable car and walked down. Convinced the girls (6 and 9) that it was good for them!
I think it cost me an ice cream. Another clear blue skies day.