Giving myself today for a pity party. Have been having a good week, was feeling hopeful, actually making plans for a few things and then couldn't sleep (for no particular reason) and today is PAIN and ........ Sorry, but I know you all with sympathize. I am so frustrated and down hearted. There are just basic things I want to do, like clean my room or do some sewing, and I can't. It's cool here today, 70 F and I'm sweating unbelievably with the slightest movement. Can't believe this is my new reality, having a hard time seeing the light at the end of the tunnel and not thinking it's a train headed my way! This past two months has just been one not so good surprise after another and I'm worn out!
Thank you for letting me vent and just being here!
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PamelAnneCT
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Sorry to hear you are feeling so bad today - but it WILL get better in time. How long it will take no-one can say but you will learn to adjust your life and expectations so you at least don't feel so hopeless.
Do you have PMR? If so, are you sure you are on a high enough dose of pred? I often felt like that before I was put on pred (5 years of it) but since then, while I've had bad days, I honestly can't say I have had days as bad as what you seem to be going through. Mind you - cleaning is the least of my priorities since when I do much I do have bad back pain the next day even with pred - but that is something other than PMR really and I use other ways of dealing with it, Bowen therapy deals with the low back pain quite well as long as I don't aggravate it too much. For the really bad bits I get local cortisone injections.
Have you read the Spoon Theory by Christina Miseriando? It really is worth it and is very thought provoking:
Was diagnosed PMR/GCA on 6/25 and have been tapering from 60mg Pred daily. I am at 25mg and I know that the rapid drop in meds is part of the issue. Saw my GP on Friday and she agreed with me to slow the taper down.
I'll look into the reading material, might be just what I need today!
If you have GCA (and judging by that dose you do) then you have a serious illness. If you have GCA then a drop from 60 to 25 in 2 months is very very fast and is leaving you at risk of a flare of the GCA which you really don't want. Maybe your GP might be interested in this paper, aimed at GPs to help them manage GCA better, and it has a recommended reduction scheme which is much slower than you have been doing:
Many people with GCA do feel very poorly for a few months until it is under control - but your poor body must be wondering what has hit it reducing like that. Often even a 5mg drop in dose is too much and then 2.5mg at a time often helps. Top experts in the USA recommended years ago that no reduction should be more than 10% of the current dose. At 60mg that is 6mg, at 40 it is 4mg and so on. And as you reduce you need to be at each new dose for at least 2 weeks to be sure you are still OK on the new lower dose.
At the moment you need to rest and let your body have some chance to heal itself. That doesn't mean lazing about and doing nothing - but the most you should be doing is going for short walks to keep your muscles in trim. If you just sit around or, even worse, lie in bed you lose muscle bulk and tone - and it takes a long time to regain it when you have a chronic illness. You may only be able to do 5min to start with but 6 times a 5min walk is half an hour which is what you really should be aiming for.
It WILL get better, I promise, but at present you are at the beginning of a long and rather bendy tunnel! It isn't going to be easy and probably not entirely straightforward - I don't believe in gilding a lily - but this time next year you will look back and be amazed at how far you have come. It will be a whole new world by next New Year if it comes to that.
PamelAnne, I know it isn't easy when you get hit with a bad day, but hang on to the fact that you have been having a good week until today. Unfortunately, bad days are very much par for the course with PMR and GCA, especially in the early days. Don't try and fight them, but give in and rest, especially around the time of any reduction in dose. I spent many odd days where the only thing I did was to have a little walk, sometimes taking longer to get my shoes and coat on than the actual walk itself! One of my PMR friends had frequent, what she called "duvet days".
If your humidity is anything like it has been here in the south east of England for the last couple of days, I'm not surprised you are "sweating". If you drink coffee and alcohol, avoiding them can help.
Hello Pam/Anne . I am sorry that you had such a bad day and that you are in pain,and i totally agree with what you are saying that it's frustrating not being able to do the jobs we want to do . I had the same sort of day you are describing yesterday but I made myself give in to it ,and that is after starting a course of Bowen Therapy for my pain and was feeling so good about myself after the first treatment and then I suddenly realised that I had been doing too much because Family and Friends expect me to make that extra effort all the time ..I came away from my first Bowen Treatment with a much more Positive Approach to my Condition and I am determined not to let anyone get me into a Negative Mood ..I have a second treatment coming up tomorrow and I can't wait and wish I had been for the treatment before but as always I put myself on Back Burner because of other things going on with Family Commitments and the fact that Family and Friends can't understand why I can't kick my habit ( taking steroids ) .
I get told ..Do it in 1 swoop ..Go Cold Turkey !! Or Why do you do this Slow reducing ?? All I can say is You Try it ... I have had 11 years of this Roller Coaster ride and there are other people out there that have had it longer ..It is good to vent your anger at this horrible condition and the WONDERFUL People on this Forum are always there for you
I hope you have less Pain today ..best wishes trish29
It's up and down all the time, there seems to be no reason for the bad days...weather, diet, stress - I can't pin any of them down to blame for the dips. Be thankful for the good days, but I know the bad days are much harder to bear after the good ones. Relax the muscles as much as you can and in spite of the sweating try and keep keep them warm. You can do it!
Very good advice as always from PMRpro and Celtic. I have nothing to add except to send a big virtual hug. It is a tough road and we have all been where you are today so we truly understand. Hope tomorrow is a brighter day for you x
I do sympathise. I was about to put up a positive post of how I'm on my third week of 12.5 - this time round- and feeling so much better. Weight down below 60 kg, despite indulging in cake and ice cream with my grandson, energy enough to remember that the day has three parts - morning, afternoon and evening - on of the three seems to have been missing for so long due to lack of energy - when, as if to remind me not to tempt fate, I felt a twinge of an all too familiar pain at my temple. But it's only a twinge and there are other days ahead.
We can get through this; in my fifteen years I have been down as low as 4mg and hope to get there again going slowly, slowly, slowly. This time I'm trying the Kirwan plan which gives me another three weeks at 12.5 , then slowly to 10mg and then a year there before reducing further. I've no doubt there will be setbacks but if I can avoid a major flare I shall be happy.
We have to remember to rest when we can; resist the 'I musts and I shoulds' which seem to beset so many of us put your feet up and relax.
Thank you everyone! I slept well last night which makes a huge difference. I've started a journal to track my days/symptoms and hopefully this will help me recognize what I can do, can't do and may be able to do if I plan. This whole thing is such a shock to me, who was always known as a powerhouse, who could do anything, and always did. I suppose this is my body's way of telling me that I've given to much to everyone else and now it's time for 'me'. Onward and upward. Much better today, calling my Rheum to see if I can get in sooner that the 22 of Sept. have a sneaking suspicion something's brewing with the latest reduction and I'm concerned how fast he's brought me down.
Many of us were the powerhouse of the family. This time it is about YOU - and, frankly, stuff the rest of them. You have to learn to use a very useful 2 letter word: NO. No, not today, No, not jst now - maybe next week - if I feel up to it. It isn't forever - but it is the best way of finding a forever!
Hi everyone (especially pamelAnne) hope today is a good one. Really encouraged by all the replies. Am in the same position myself PMR/GCA started on 60mgs but just for one day then straight to 40mgs. Was given 5mg per wk tapering by GCA specialist but after two weeks my feet ankles legs up to thighs were full of pitting odema and very breathless, two things I had never experienced before also jaw claudication returned so went straight back up to 40 til I spoke to consultant two weeks ago. He was in a rush to catch a plane to a conference so unable to ask all the questions my doctor and I wanted answering. He wants me on methotrexate and of steroids quickly although I think I am faring well on them, he feels it's still a bit of a honeymoon period and could change drastically for me. The hospitals original tapering had me down from 40 to 20 in four weeks them completely off within the next year. The new tapering is 5mg every two weeks til 20mgs then one a month to zero, which at least is nearly two years. My problem as you have all pointed out is the initial 5mg drop. So I am doing it a bit my way a bit theirs. Am dropping 1mg every few days til I get to 35 by the end of the first fortnight. So far so good. At least I can tell the difference between withdrawal symptoms/life in general/ GCA returning. Swollen feet and a bit of breathlessness seem my only enemy at the moment, am off for acupuncture shortly, really helps with the various muscle problems/ injuries I keep picking up due to the steroids weakening them. It's true you have to keep moving, am at snail pace at mo but still am in the race a least! 👍 . All the very best to all the above who replied to pamelAnn as it really encouraged me too. Have a fabulous day. Lv cc 💁
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