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
Anhaga julian.
Posted
Interesting journey. It is extraordinary, isn't it, to look back as you have just done, and see how far we've come, and along a road none of us expected, or even knew existed.
julian. Anhaga
Posted
yup,
at the beginning it was a lot about convincing myself it wasn't the end of the world and figuring out how to manage it. Looking back is useful to know how different it is now and helps looking further forward positively.
jean39702 julian.
Posted
Julian, I too have been on this journey for 3 years and you have described my life since diagnosis in many ways. We learn to accept what we can and cannot do and we learn to live with the consequences. Take heart, I was put on 40 mg after attempts at 20 and 25 failed and I had a total meltdown. The thoughts are now that there was some GCA involvement. I've had two flares and after the second in May 2016 I learned that my body is extremely sensitive to drops. SInce then I've been on a very slow reduction of .5 mg every four to eight weeks, depending on where I am and what i'm doing. I finally figured out "My PMR Normal" . I;m only now dropping to 10 mg and quite happy to remain the slowest tortoise in the race as long as PMR normal continues.
Best of luck to you.
EileenH julian.
Posted
I hope a lot of people read this - because it fits with my 13 years of PMR and 8 years of pred. I really don't think PMR makes much difference to my life 95% of the time - but I have learned to live with the PMR gorilla very well. It is difficult to explain that to many of the newbies though!
julian. EileenH
Posted
thanks,
I think it takes a bit of time to wrap one's head around it, and adjust, in the early days.
sandy65909 EileenH
Posted
Glad to learn that 95% of the time PMR doesn't interfere with your life. You are right, this newbie can only take what you say as something to anticipate way down the road. Now the gorilla is sitting on my 102 pounds with dynamic force and pressure barely letting me squeeze out. He lets me up for small meals, one activity per day and 2 measured doses of Pred. then he's back. He also hates it if I'm gone too long. Forget unforeseen circumstances like my flat tire yesterday on the way to NYC. He was especially mean when my dog got a tummy ache and we went out 5 times on the elevator. He is a punishing beast if he doesn't get his way!
So glad you tamed the beast! I am hopeful my gorilla and I will coexist in the near future.
Thanks for your meaningful posts.
Babazaga julian.
Posted
Your experience is daunting.
?While I do not have PMR---I do have GCA which requires Prednisone, so I can relate to your experience with the drug. I too have various annoying things happen in the space of a day---pains in my chest, cramps in my arms, nausea. Then there's the skin destruction and hair-thininning. Truly, I don't know what is the disease and what are the side effects of the drug. I check with my Rheumatologist who tells me its all going well. I began with 20 mg of Pred. last July; was restarted in November at 40 mg and am slowly reducing having arrived at 5 mg a week ago.
?I was taking Prilosec daily which I really don't like to do, but reduced that dose slowly and now take none. My research says both drugs will deplete Potassium and Magnesium so I have been taking supplements of both which have greatly reduced leg cramps.
?And yes, fatigue is a major factor. I used to be able to work in the garden for hours and now after 20 minutes I feel lousy and have to stop. Ditto with any major physical effort. BUT---I have seen some improvement as I've reduced the Pred., so hopefully you will too.
?Don't know that all this is helpful---just wanted to let you know that those things you mentioned that you wondered about are indeed part of the process with Prednisone---and not necessarily something else---or so I am told and hope is correct! Good luck.
julian. Babazaga
Posted
not sure how well I'd deal with GCA.
I did have my headaches (lifelong) change alarmingly and doctor sent me for a scan. Nothing there of course.
But we had one of those doctor - patient moments when we agreed I felt better for not knowing - reassurance is worth a lot with this chronic stuff.
Other times there was something "real". But I had no way of knowing without a bit of help.
Having failed to convince me I needed statins for high cholesterol she embarked on a different tack. I agreed to a coronary stress test. No symptoms, but I now have a stent. By a stroke of good fortune the coronary rehab exercise didn't cause a flare and I felt much better.
All a bit scary for a while though, until objectivity returned.
sandy65909 julian.
Posted
Your post spoke to my soul. Since I'm at the beginning of this unwelcome journey, I appreciate your reference to the middle. The end for me is incomprehensible! Since I'm so used to taking a pill for most illnesses and getting better in a designated period of time, this curve ball requires many adjustments to time management never before considered. When Pred head is added to the mix decisions become overwhelming! Having an active life prior to onset of symptoms makes putting on the brakes feel like standing still. Acceptance and resolution is not easy but essential for progress. Thanks for helping me proceed in a positive direction despite the desire to fight this thing kicking and screaming!
Reeceregan sandy65909
Posted
I have to agree with you Sandy, and thank you Julian, for the understanding and explanation of what is ahead for us newbies who have been clubbed over the head with a mallet and made to sit back and try to adjust quickly to something has no " quickness" about it. Your outline of the journey you have experienced gives us hope. And we need all the positivity and hope we can muster up. Bless you both as we forge ahead. 💪
sandy65909 Reeceregan
Posted
Silver49 sandy65909
Posted
I was at that stage 2 years ago having had PMR for several months, and certainly longer than diagnosis. I was prescribed steroids towards the end of May and apart from the initial energy burst at the beginning I struggled to work out what had happened to my get up and go. It had got up and gone. Two years down the line and now at 2.5 mgs, I feel so much better and am almost back to where I was, with a bit less energy, but I suppose I am 2 years older. I think that is true of PMR .....slow helps. I had to do what I could and rest in between but now I don't have the same amount of rest. My hair which thinned so much has grown back and one of my grandchildren has remarked on it several times. The Cushingoid face has gone and the wrinkles have returned. The weight is slowly dropping as the steroids reduce and the odd shape I have become is slowly beginning to revert to my original shape. There is progress but I remember thinking that it would never happen. I am not complacent because I know it can return but I am cautiously optimistic. Be kind to yourself.....it helps.
sandy65909 Silver49
Posted
Be kind to myself is the operative mantra! I'm learning to put me first which is hard as a daughter, mother, financial advisor and founder of a charity that helps urban teens and their families! A complete, sudden overhaul is in the works.
Learning to accept the notion that I am enough and have enough right now as things are this minute is taking route in my being!
Thanks for your support. Stay happy.
chrisbrit julian.
Posted
I'm waiting for the blood work to come back. I won't push the Neurologist to give me Prednisone until then. I think cooperation will be better than an adversarial relationship!
?In the meantime I have been coping with the fatigue and pain as best I can. After many nights of poor sleep and vivid dreams, I increased my nightly dose of Clonazepam by .5 ....so I take 2 mils. It made a huge difference. At least I could get out of bed more easily. Then I remembered the Lidocaine patches that I had for a previous condition. I cut one up and applied to my hips and shoulders. More relief. I think getting enough rest and the right kind of rest is so important no matter what the ailment is. But it sure seems to make a difference to PMR symptoms. I'm hoping I get the call and the RX for prednisone very soon!
julian. chrisbrit
Posted
I have an industrial background. Years of "stable is good", "methodical" and "change one thing at a time".
I've been very lucky with my doctors. Possibly because I don't do "adversarial". It simply wouldn't make sense to me. I tend to look at it as "we are working through my problem".
No help at all to you, I can't relate to "waiting for bloods". Aus has very fast turnaround with no queues. I did have to wait 2 weeks for an appointment to take a blood sample in UK which I found totally bizarre. But I can imagine the frustration at having to wait for diagnosis and treatment, while knowing that the tests may not help confirm the diagnosis and neurologist may take some convincing.
Its a fine line between self diagnosis and working through the symptoms with the doctor to arrive at a diagnosis.
I recall two effects from having a diagnosis that made sense. One was the treatment with pred. The other was simply knowing. It meant I could understand what was happening and take appropriate action rather than continue in a sea of uncertainty.
I did have some non-steroidal anti-inflammatories which took the edge of the pain pre-diagnosis but I suspect might just as well have been a placebo.
EileenH chrisbrit
Posted
What bloodwork takes that long? It is devoutly to be hoped you don't develop GCA - because "waiting for the bloodwork to come back" could be exceedingly risky! There is no reason at all why the doctor can't try a short trial of moderate dose (15-20mg/day) pred to see the effect. Many causes of PMR-type symptoms won't respond to pred. PMR is characteristically very responsive to a moderate dose of pred and many doctors take it a part of the diagnostic process. If it doesn't work - you can can stop overnight with no problems.
It is also rather strange to have a neurologist managing a vasculitic condition that causes rheumatic symptoms.