I am thrilled to find this group and finally talk to people who not only understand but can suggest things to help me cope! So first off I want to say THANK YOU.
I have always had difficulty being the patient. It's been sort of a joke in my family that when I was ill, everyone cleared out. I am an exceptionally good nurse, and I think that my own low pain tolerance and misery when ill makes me a more compassionate nurse. They always say nurses make the worst patients.
I have a million questions and am trying to determine if I should start other threads or ask them all here... I've had this now 5 mos. I'm still out of work. My position has been eliminated as if June 24... I am trying to be grateful and relieved as the pressure to return was a significant stressor within me... But one of the things I am still struggling with is how to be okay not knowing the future. Not having control is still a major challenge for me emotionally.
How does one "listen" to their body? When I sleep until noon that means my body needed it so it's ok? Because all my life I would not allow myself to waste half the day in bed! I rarely have pain, but now whenever anything happens, I wonder if it's PMR or just benign. I drive myself crazy! I get a headache and worry. I have had chronic back pain most of my life... Well controlled with chiropractic visits for the past 15 years.. (Oddly enough THAT pain vanished when I started steroids... My guess is that it got rid of inflammation so the back and neck pain ceased. )This month, the back pain is whimpering a little bit here and there.... And I wonder - just me? Or PMR??
Do "flares" occur during dose reduction soon after the lowered dose? What if my dose has been the same for 6 weeks... Could it occur then?
The pain in my toes (see post " I'm new here") woke me once in the night. I cannot elicit the pain by manipulation or pressure on the toes, there is no swelling or redness. I would just shrug it off as a phantom pain but it is so intense when it hits (yes I'm a wimp but it IS bad)!
I feel so overwhelmed. I have so little control. I am seeing a therapist weekly to help me cope, and her help was invaluable in jan/ feb when I was just falling apart emotionally at the onset of this whole nightmare. I do have a hx of depression and have been on Prozac for 25 years... Also, well controlled... Until this.
I try to be grateful for what I have. I realize I really am lucky, so many others have it so much worse. But I feel like I'm 20 years older than I am. My coping mechanism has always always been to simply PUSH THROUGH whatever the barrier is. I raised 2 girls alone working 3 jobs at a time...I've never known quit or failure. If I push through now, it costs me DAYS to recover. It's so hard. To understand what I can do, and what I can't do.
My daughter got married last month. It was a weekend at a farm, with lots of action and a lot of hard work. I planned ahead to make it as easy on myself as I could, etc... And of course, I way over did. It was a lovely wedding and reception... What I can remember of it 😔. I slept for a week following. And now I have big chunks of hazy memories and some totally blank.
My grandson graduates high school next weekend. I have decided not to attend as travel and ceremony combined would take 6+ hours and I am learning I cannot ever successfully exceed 4 hours of "activity" in the day. This makes me so angry! I feel so helpless and victimized. Then I become distressed because I am so upset! It's a vicious circle.
How does one listen? How do you pace yourself? How much exercise ( ! ) should I be attempting? How do I recognize a flare? How do I relearn how to live????
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Zacsmimi
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Hi Zacsmimi, I really feel for you. One thing to take on board is that PMR is life changing and I have found the best thing to do is give in to it. If you need to sleep until midday, then sleep until midday. Pamper yourself. Slow down and rest. I had not been ill since I had measles when I was ten years old, apart from the odd cold, I must be one of the few people around who has never had an antibiotic! I was always the life and soul of everything, I find having to turn down invites really hard and often embarrassing, as I feel such a whimp saying I am not up to it. I do swim and a friend of mine and I have taken to having an occassional glass of champagne afterwards. Goodness knows what everyone else thinks as we sit in the cafeteria laughing. I also have massage and the occassional pedicure, which cheers me up. I try and plan my life nowadays, while in the good old days I would just do things off the cuff and be totally impetuous.
Initially I did not like to say I could not do things, but nowadays if I go shopping for example I ask for help if I need it. I am amazed how helpful people are, they carry the shopping out to the car for me even. Perhaps I should have become helpless years ago!
We all do - but this a place where head has to rule heart. If you moderate everything and slow down a bit you will be amazed at how much you ARE involved, but in a different way. You can be involved by sitting and listening to someone who needs you - you don't have to be up and racing around doing the cooking and cleaning, for example.
This isn't a religious push - but do you know the story of Jesus, Martha and Mary? Same thing.
It is on another forum for PMR and GCA, there are 3 in the UK - I gave it you in your other thread.
"Do "flares" occur during dose reduction soon after the lowered dose? What if my dose has been the same for 6 weeks... Could it occur then?"
PMR is just the symptoms of an underlying autoimmune disorder which very probably cycles in activity. So a flare can happen either because you have reduced the dose too far OR because the activity of the underlying disorder has increased for some reason, just as in RA. A flare is a return of symptoms or increase in current ones.
"How does one listen? How do you pace yourself? How much exercise ( ! ) should I be attempting? How do I recognize a flare? How do I relearn how to live????"
How much exercise - what you can manage without leaving yourself exhausted and sore. Start with gentle walks - not a day long hike - and on the level not too many hills. Start with 10 mins, rest a bit, 10 mins again. If that's fine add a bit. There is some stuff about building up exercise in the ME link in the pacing post I think. Don't listen to anyone who tries to tell you to "work through the fatigue/pain" and don't try to do more just because you feel good just now - you may well hit the brick wall of fatigue and be reduced to hitching a lift home! As you have already found.
But you can rest in advance, that helps. You can split things - travel one day, do it the next. Make sure you have a place to retreat to. If you can afford it that is.
By the way - these are the criteria for a PMR diagnosis - do you fit them? Just because of your other post...
Need to go and cook dinner - but this will keep you going for now. I'll be back. So will others. And you'll probably get more valuable answers if you ask one or two questions at a time in a thread - this is a somewhat user-unfriendly format and you may miss half the responses that are of use!
I do meet them...I think. I had shoulder pain and issues for several weeks before the date the pain in my hands started and was so severe... I think the shoulder let up before the hands.,..never occurred to me it was related. After the hands it traveled all over the place. Knees, elbow, shoulder, neck, ankles, wrists... fingers fingers fingers. (couldn't lift a spoon, couldn't pull back the covers on my bed...) Pain lasted about 3 weeks. Slowly improved. Then when he took me off Prednisone and started Medrol - the pain was pretty much gone by then anyway- but my labs improved rapidly.
I've been feeling crappy for a couple of days now. Aches and pains, but not severe ( other than the weird toe thing which has only happened a couple of times today)... increased fatigue, definitely increased emotion and feeling discouraged. Can't go to sleep at night, and can't wake up in the AM either. LOL. I feel like my skin is sort of hypersensitive, you know how you feel with a fever? But I don't have a temp. Was quite dizzy for a while this afternoon which is NOT common. I had been in the garden, probably overdoing it... it wasn't very hot out - I may have just been dehydrated. I hate having to second guess everything.
Yes, I recognise the skin feeling, I still get it occasionally. The other things could be the Medrol (I really didn't get on well with it!). Being on steroids does make some people sensitive to the sun. And overdoing it is - I'll say it again, and again - is a no-no!
There are other autoimmune disorders that can appear looking VERY like PMR and there are no tests that identify PMR unequivocally. I assume your doctor checked for a whole range of other things before plumping on PMR?
He said he did... he had it down to either PMR or RA but decided on PMR after the Rh factor came back negative twice and the C test - the word escapes me now ...
Prednisone did not get a great or fast response from me, he said I probably do not metabolize it properly. So we changed to Medrol and then responses were more dramatic. Unfortuneatly, altho it worked well getting inflammatory response to calm down, I had every side effect it lists except psychosis and at times I have wondered... it was only when I got down to 10 or 12 that I began to sleep all night and stopped shaking so hard.
i had a load of Medrol-related side effects too - the worst was a beautiful black beard! Not a good look - thank goodness for my epilator. The peach fuzz was not too bad compared to that. And 20mg a day did not a lot...
I'm sorry Zacsmimi, you sound so much like me before I was diagnosed and put on Prednisone. By the time I could no longer lift my arm to feed myself I knew I has to try another Dr. I did, and was put on 15 mg, in a week I was close to 90 percent better. What a blessing the Prednisone is!😎
I am now fighting to lower to 4 mg, but I have had it for 5 years. Flares yes, hair loss, twice! STRESS is my MAJOR factor for flares! And 2nd is being a hard head and over doing myself!!! It's so hard when you just want to do the normal things others do, we can but at small doses. So you are not alone, just rest when your tired and do a little at a time! 💕 💕
Sounds like your mind is going at ninety miles an hour, when your body can't!
You sound like many others on here, in that you've always led a very busy life, and always been in control, and now suddenly you've lost control. That's difficult!
You need to come to terms with the fact that PMR, or GCA are not illnesses that can be cured by taking a course of tablets for a set period - and then it's gone. Most people have it lurking around for at least 2 or 3 years if lucky, and probably a lot longer.
Once you've got that set in your mind, you can deal with the day to day trials. As others have said, if you need to sleep half the day, and you can, then do so - don't feel guilty. As a nurse you'll know that sleep is sometimes the best thing for a patient.
Plan your days, so that you're not doing the cleaning, washing and shopping all on one day - do a bit at a time, and if you need to rest part way through - then do.
If you're going on a trip, then travel one day, have a rest next day (if necessary) do what you've got to do the next, then rest, and then travel back another day. It seems like a long drawn out procedure, but at least you'll be able to enjoy it, and not be shattered all the time.
Take time to do some gentle exercise, not too strenuous, like walking, Pilates, yoga, tai chi etc. Make time for YOU for a change. And say no to things you don't really want to do, sometimes we're pressurised into saying yes to everything and everybody - now you have the perfect excuse.
Talk to your friends and family and try and explain to them how you feel- they won't understand everything, but they may get some idea. Trouble is, you look okay on the outside, so they assume you are! If you had a broken leg they'd be sympathic, so you need to let them know how you feel.
Pred will mask your other aches and pains as well at higher doses, but unfortunately they do come back when you get lower.
You do have to adapt your lifestyle, but it's not all bad. Just look at it as living in the slow lane for a little while - and we could all benefit from that from time to time.
It a cliche I know, but you have to live almost one day at a time, no point in worrying about what will happen down the line - deal with it when it comes along. Worrying will just make it more difficult, PMR loves a bit of stress!
Read as much as you can about PMR, although sometimes that becomes a bit mind-numbing, and unfortunately we don't always conform to what the experts say how we should be reacting.
As PMRpro says probably best to ask about one topic at a time, then you're more likely to get a wider response, because not everybody will have all the same problems as you, but many can give advice on a specific matter.
And re-reading this, I wish I lived next door to you! (altho I would imagine you are probably glad I do not! ) What a fountain of knowledge and understanding. I hope I can be as helpful to others about this at some point. thank you - again.
First, I really feel for you and endorse all that PMRpro and DorsetLady say in their lengthy replies. You couldn't have better / more expert 'mentors' in the process, as I have discovered...
Just to add a couple of things on the emotional side, if it helps:
For me at least, the central theme of and challenge in coping with an illness like PMR is unplanned CHANGE. Change is natural in Life, as we all know! But an (often suddenly and unwelcome) change in our physical health, daily capabilities, self-concept and future expectations can be as psychologically and emotionally demanding as anything. And, as you say, dealing with Uncertainty can be the most challenging aspect of all.
If (as you suggest) your inherent Personality Type is traditionally that of a 'Doer / Action-oriented / Being in Control' type person (like many of us!), you will inevitably also have some major adjustments to make to your mind-set around all of these things. This means accepting that you are only mortal and, for whatever reasons and like-it-or-not, are for the present at least 'One wing down' and needing to adjust (I prefer this term to 'lower') your emotional and physical horizons. With PMR, you don't stop living - you just learn to live life differently.. for now. Easier said than done, but this is where the real 'work' starts!
Also, 'Giving-in' and 'Giving-up' are two different things, as I'm sure you will have said to some of your patients when nursing them? Yes, Despair, Depression, and a feeling of wanting to 'Give-up' can be hell. I have been on this journey too, in a past chapter in my life, and in a similar context to yours. On my journey, I learned and still use the Survival Philosophy of 'Rolling with it' as a more gentle interpretation of 'Giving-in (or up)'. It helped me immensely in getting through a few tough years of massive change and challenge at all levels.
Understandably, you mentioned the idea of 'battling / fighting' with PMR - I can well-relate. How about thinking of 'PMR vs. You' as a game, more than a fight, where (a bit like the boxer Mohammed Ali -sadly, rip today) you develop a strategy of holding-back and waiting until PMR eases back on its punches and you regain some feeling of control once again? Yes, it's a day-by day process: but 'Baby steps' are often best in making big behavioural changes.
This leads me on to the Kubler-Ross process in managing and coping with Change. Dr. Elisabeth Kubler-Ross was a ground-breaking medic who studied and documented her experience in dealing with the emotional journey of patients with terminal illness (she did her first work of this kind in the 1970's, I think). She went on to publish several internationally acclaimed books about the emotional journey / process that, almost universally, her patients went through in coming to terms with Change in the most profound circumstances of all. Her stories are incredibly poignant, but her concept of the emotional journey (basically, 'Shock, Anger, Denial, Negotiation, Acceptance') is almost universally transferable into any Change situation, from the mundane to the major.
I'm laughing here: today, I had a flat tyre on my car and the Kubler-Ross reaction kicked-in without my realising it. First reaction was to kick the tyre, saying 'B****r! (shock). Then, 'The garage didn't fit it properly' (displaced anger). Then, 'No, it's ok really, it just looks flat' (denial / 'stuck'). Then, 'Maybe I didn't check the pressure often enough?' (honest negotiation with self). Then, 'Ok, so the tyre's flat. Either way, I need to call the Rescue Service and get mobile again' (acceptance / moving forwards).
On a serious note: the most interesting (and possibly important?) thing about Kubler- Ross's model is that we often find our most productive emotional resources at the (later) 'Acceptance' stage in the Change process. This is when we are more likely to think more rationally and possibly also creatively (?) about practical solutions to the way forwards in Change (for ourselves / others), and to let-go of some of the emotions that might restrict us in the process. In my experience, this is also the stage where we can 'let others-in' to help and support us - as they want to do but have been afraid to do before, due to us being always 'in control' (!).
In your down-time, I recommend that you delve into her, and other research of this kind, and it might help you with the process of 'Mind' in conjunction with 'Body'? It helped me personally, and I use it in my professional work a lot.
You might also try to think less about 'doing / achieving', more about 'being' (if you can?!): and how to roll with each day as it comes. For what it's worth, I'm a 'Doer' too: but in the last 12 months with PMR I've found a few creative sides of myself that I never knew I had, and that don't take massive amounts of physical energy. Creative writing is one (as a few here might testify, for better or worse! ;-). Maybe PMR will give you a chance to explore the 'hidden' sides of you that you hadn't known before?
With practice, you can and will get through this, and I've no doubt that your nearest and dearest will be there at every minute on the journey.
On a final note: in my dark days of Depression after a catastrophic period in my life many years ago, the best and most simple advice my Therapist ever gave me was: 'Don't worry, things will get better'. She was right - they did, and can. I'm not a particularly religious or spiritual person, but Faith in Yourself can also be a big factor in getting through these things. Just be kind to yourself in the meantime, and 'roll with it'.
Mark - please post this as a new thread with a really clear title that would make it fairly easy to find again. It is super - very very useful.
And it brought me to
"This, too, shall pass" (a Levantine proverb)
"... it is a prudent reminder for us all that regardless of how the serendipity of life has dealt with us, it will soon pass. It speaks to me that "Change is the one constant in the universe" and it aligns with what the poet Rudyard Kipling said in his poem "IF" ...
It's stuff that I and others have said in bits in replies, just like the pacing stuff was - but that and this bring the bits together and you can then refer someone to it rather than trying to write again and again.
Of course, I'll be Delighted to have my name put to any re-posts, but can you hold-fire until I re-work the article as I want to say a bit about how (broadly defined) Personality Types also come into the 'coping with change' equation? (I studied this, and Counselling Psychology at Uni many moons ago..).
I won't go into psychobabble in the article, but from experience this can be very relevant to how individuals adjust to Change, in conjunction with the Kubler-Ross model. I'm working on it today whilst feeling bright and breezy..
If you want to PM me to discuss further, let me know
Obviously I was going to wait for the new improved version! Only the best for the PMR/GCA forums! I may suggest you put it on other forums on HU too. It is, after all, a common problem around here...
In typical style, I started to write my serious (unusual for me..) 'piece' and the more I thought about things, the more I wrote about Personality Types, Change and the dynamics of both in the context of PMR/GCA and coping strategies with chronic illness. It could end-up as a book in its own right... Mmmm.
Also, and from experience as a writer: the longer an article, the more it benefits from some style-formatting to break it into manageable and visually user-friendly chunks(e.g. Bold sub-headers, Italics, etc).
I got a headache trying to transfer my Word Doc into this forum's format without the above, so I'm going to give my brain a rest and resume in a couple of days (work tomorrow). I know what you mean about important threads getting 'buried' here - there must be a better way?!
In any case, thanks for your support: not only in the PMR process but also for your encouragement of my well intended 'ramblings'. I really appreciate it.
Possibly put it as an article on a website? Like the NE one who have stuff like that? And their forum.
I know though - I happily write epistles on patient.info and the NE forum where I can format it. But here? Especially when you are down to the reply to a reply to a reply. And heaven knows where it will end up.
The story of my life - whenever I get to a place where things *finally* seem to be working, something flies out of left field and throws me off balance again. You know, I'm simply tired. I don't want any more of this. Why could I not have just a month or two, that's really all I ask, of contentment, before having to struggle against the wind again?
Maybe a 'Like' isn't the most appropriate response (!), but I know what you mean HeronNS. Don't forget, you are one of a few here who are always supportive of, and reliable for others: and there is such a thing as 'payback' in this life.
If it helps, remember the old proverb, 'This, too, will pass'?
I liked this one better than your re-write ! Altho, perhaps it was because it was personalized for me. However, I am the EXPRESSER I believe - not the high drive control issues type... in the Myers Briggs test I am an ENFP, I believe... reasoning things out is not always my first move... I FEEL. And Im having to learn a new way....
Just a quick response as I'm working tomorrow (needs must..).
Thanks for your lovely reply, and interesting to know about your MBTI profile. But more about 'Types' and the numerous methodologies for determining them another time. It's a complex subject at a number of levels! But I won't get on the soapbox about this just now, or I'll be here all night
What can I say, other than that I don't consider myself an expert in these things: just someone with a fascination in the Human Condition and making sense of it!
FYI, I'm naturally more of an 'Expressive' Type too - hence the ramblings!
Oh how I empathise with you. I have GCA, no signs of PMR (yet!). But like you, the phycological effect of diagnosis and coming to terms with a chronic illness and the life changes I had to make were worse than having GCA! I had also been in control of all aspects of my life, not a control freak, but just reached an age where I was happy, settled and knew exactly what I wanted and what I didn't.
I put myself through hell. I was in denial. I was angry. I was sad. I thought I could fight it. It felt as thought part of who I am had died. I grieved for my past life and feeling of well being.
It took about a year for me to finally accept that my life will never be the same. I learnt to be kind to myself, to pace myself, to get the right work,rest and play balance.
Tremendous and invaluable help and support from this Forum got me through. My GP and Rheumy dismissed/ignored my state of mind and offered no help or support.
My ramblings may not be of help but just know, you are not alone. We understand and will offer support when you need it. X
Sorry, but join the club. I do hope you get over it & back to good health but fear it will take some time. I'm afraid we have to just realise that life is not what it used to be. Best of luck. C.
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I'm listening to my body, more and more!
How long do I want to remain on the initial dose that cleared my pain?
I feel I need a wheelchair. Am I missing something?
Left thigh pain
PMR Flare problems
