Fatigue and pain --what is normal?
Posted , 14 users are following.
i got pmr in September 2016, started on 20 mg pred. Got down to 4 1/2 mg. in August, but felt terrible, went back up to 6 mg., but then had bone crushing fatigue and depression, so at the advice of folks here, I went up to 7 mg. that was 2 weeks ago. I still feel exhausted most of the time...do dishes, sit down. Make bed, sit down. one load of laundry, sit down. The soreness and stiffness is ever-present, especially in the mornings; it never goes away completely, it's not a flare, nothing even close to the original pain, just an ever present reminder that the pmr is there. Just had blood levels tested 2 weeks ago: perfect. The bone crushing fatigue--where you can barely move--is better but now I'm just plain exhausted. I can walk around the block a couple times a day, but that's it. Here are my questions: 1) is what I am experiencing anywhere near to be expected as part of the pmr illness? Do others experience this? 2) my body hates pred. Since I've returned back up to 7 mg., I'm constipated, not sleeping well, hair falling out again, etc. just thought I would mention this--I can tell that the side effects are returning. So certainly I am loathe to increase it even more...I just want to know if what I am describing is to be expected as part and parcel of the illness. To be honest, I just dont remember what I felt like at 7 mg. the first time around....thanks so much.
0 likes, 31 replies
clare84716 Twopies
Posted
Hi twopies. Can't really offer much advice as fairy new to all this but just wanted to say I know exactly how your feeling. I started on 15mg pred got down to 10mg then big flare so doc has increased and currently back up to 14mg. Take care hope things turn around for you a little soon.
Twopies clare84716
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Thank you...I don't think I'm having a flare; I have soreness and stiffness in my upper legs (thighs) and groin area, none in my arms or shoulders. Appreciate your kind thoughts....
clare84716 Twopies
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Apologies didn't mean to imply you were in flare I just meant I flared a while ago a hence increase in pred a couple of months ago. My pain is nowhere near that pain level but I'm having all the same symptoms as yourself now. xx
Twopies clare84716
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Thank you--so sweet! Misery loves company? 😍 It makes me feel sooo much better to know I'm not alone (I feel so alone) in this journey. That's why I posted this issue this morning, to find out whether anyone else has had similar experiences...just knowing that you have makes me feel better, less out on a ledge.
clare84716 Twopies
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Sadly it can be a very lonely world and awfully dark too but pages like this can be a godsend. Don't know if you're on Facebook but there are a few good pages/groups on their. Many of which have someone pottering about at odd hours as in various countries as well as sleepless night sufferers who can lend a shoulder or ear when things get to much or offer advice etc. x
EileenH clare84716
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EileenH Twopies
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Whether it is normal or not I can't say - but plenty of others experience it too! That's why we bang on about pacing and resting appropriately - no, you wouldn't have to do it if you didn't have PMR, but you do have PMR and that is where you are I'm afraid. The fatigue is part of the underlying autoimmune disease that is the cause of the symptoms we call PMR and the pred doesn't really touch that, it isn't what it does. At higher doses of pred the fatigue is sometimes offset by the Duracell Energiser Bunny effect - but not always. Everyone is different.
At this level, as you know, there is another thing to add to the mix - return of adrenal function. Your awfulness at 4 1/2mg was probably that. To have got this low in under a year was pretty speedy - and the likelihood is that the autoimmune part of the PMR is still active so that will also have kicked in. No wonder you felt so bad. I would suspect now that you still have some left-over inflammation going on and raising the baseline and at times it is poking its head above the parapet. There is no real virtue in taking too little pred - then you have no good bits to balance out the bad bits.
But the bottom line is that you have a choice: either you accept the downsides of pred and take advantage of the upsides - the relative lack of pain and ability to move or you say I'm getting off pred and get rid of the downsides altogether. It is all a balancing act and for some people it is easier than for others. If you don't have adrenal issues and are able to get off pred altogether then you only have one set of variables to manage. But I did it for 5 years - and I have no wish to go back there at all. I'm lucky, now I have no real bad aspects to taking pred, but I have been there - I never felt it was worth stopping pred again. As for "what it feels like at 7mg" - different for us all. I feel great at 7mg, I'm currently at 5mg and debating whether the aching thumbs are just the weather (probably, it is unseasonably cold and damp for here) or a suggestion that something evil this way comes...
Most side effects of pred can be managed fairly well. As for hair falling out - mine sheds all the time, it is still thick and healthy but there is hair all over the place, much to my husband's annoyance.
Rudivl EileenH
Posted
So, would you say Eileen, that if my pain is as bad as when first diagnosed (if not worse!) and I'm on 16 mg (been increasing gradually from 11mg since middle of August) and it's not helping at all, that I should continue increasing? Say to 20mg which did seem to be a dose that helped? 30mg was too much as I was super jittery! I can work a couple of hours then need to have a home day and groaning with the pain and very tearful trying to cope...... I had a blood test when I first started my increase and my CRP was 14 but my doctor said to stay at 11mg. I didn't!! Not seeing the rheumatologist until 3rd October and will have another blood test in readiness but not sure I want to keep going on day after day.......... it does feel a very lonely journey when we are having to make these calls on our own rather than with engaged health care professionals but I guess only we know how our bodies are feeling! R
EileenH Rudivl
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Increasing slowly rarely works well. A few days at a dose you know works and then a return to something slightly above where the flare happened is better.
But people who work often do struggle - it is simply too much and pacing is an essential part of managing chronic a/i disease.
However - if you really struggle to get below 20mg then MAYBE it isn't PMR as we discuss it - that is just the name for the symptoms and there is a range of causes.
amkoffee Twopies
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The prednisone only helps with the inflammation which then in turn helps with the pain. But it does not cure PMR and it does not help the fatigue at all. I personally find my fatigue comes and goes. Sometimes maybe even more often than sometimes I am so tired I can barely find the energy to get up to go to the bathroom. Other times I can make a grocery run and come home and then do other chores. This may just be one of your down times. But it is something I'm afraid you're going to have to deal with until you go into remission. If it makes you feel any better you and I were diagnosed at the same time and I'm back up to 14 mg because I got sick and ended up having to almost start over. I'm very happy that you've been able to get down as low as you have in the short amount of time that you've had PMR.
Twopies amkoffee
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Thank you! I blubbered when I read this...just to know that I'm not alone in the journey. I've only met one other person who has pmr--in her 12th year now--so I rely heavily (ok, pretty much solely) on this forum for direction. Solace. Guidance. the pmr has pretty much flattened me. Feeling worn out after doing dishes when I used to spend an entire day cleaning is mind boggling. I'm gonna start keeping a record of how I'm doing at each dosage of pred so I will have a frame of reference as I go down (or up, whatever the case may be). If I stay another 2 weeks at 7 mg. (having completed a month), I'm thinking I can start the dsns method to reach 6 1/2 where I will stay for another 30 days. It's not a race, just a plan. If the tiredness, stiffness and soreness is part and parcel of the pmr, then I really don't want to go back up right now on the pred because I didn't sleep at all and had lots of other side effects. The correct dosage is what I'm trying to figure out (aren't we all?). And avoid a flare.
EileenH Twopies
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The correct dosage is where you still feel good - as good as you did at the original starting dose. That is your yardstick or frame of reference. I won't compromise: I take the lowest dose that lets me live well, not a mg or two less where I feel rotten.
Rudivl Twopies
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Dear Twopies,
You are not alone and, like you, I so appreciate this forum. I was reading out some of the comments to my husband last evening to show him how some folk struggle and what we are facing.
My journey started in 2014 and I have been dreadful at mapping doses and pain levels as I was so naive when it all started. I had no idea it would last so long! Now, I wish I had kept a better record, including inflammatory markers but hey, I'm better at that now, 3 years on!
My highest dose of prep was 30mg and I was super shaky on that. I think my pain levels and certainly fatigue levels were fine - lots of steroid energy! Last November, because I was doing well, I had decreased down to 5mg and was pressing on quickly with tapering as I did not know the DSNS method on here. I just wanted desperately to get off the Meds. I was fairly small before pred - but have put on 2 stone in 6 months and I have a huge moon face to boot! I am barely recognisable!!
Anyway, needless to say, I crashed and burned - terrible flare and felt suicidal. My doctor was on it (not very empathic about my suicidal feelings!) and told me to increase so I went up to 11mg. Christmas was manageable and back to 'new normal' - not ever completely free of pain but coping well and most days were fine.
Then, since the end of May I have been on a gradual decline and needing weeks of rest at times if I've had anything on. A couple of strenuous weeks in the summer (my daughter's engagement party included) completely wiped me and I took a couple of mgs more to get me through but it has not helped at all .
Now, each day I am feeling so much worse than I was at the beginning even..... and I'm wondering if this is what a flare looks like. Also, whether I just need to bite the bullet and put myself up to 20mg - which seemed to manage me initially. I am currently on 16 mg and can barely function. Or, can do something one day and then total rest the next. Not really a way to go on in life when you're 51!!!!
So, I've shared all this, not to hijack your thread but to say that this is the most lonely and confusing thing I've ever experienced. My doctor is distant and responds after a week (appointments booked ahead are 6 weeks!) and my rheumatologist has not helped at all. Tapered me too quickly. Made a typo in my notes so that the nurses on the help line thought I had fibromyalgia which has dogged me ever since!! Suggested I take paracetamol to help with the pain.........what?!!!!..... why would we be on pred if paracetamol did the trick?!!
Anyway, I am going to keep reading and taking comfort and support from this forum. I have felt 'held' when I have been here alone and just not knowing what to do with increasing meds. You are not alone. Take one day at a time and the way I get through in my darker hours are by naming my blessings - my granny used to sing the song, 'count your blessings....' and it does really help me to get my head away from focussing in on my pain.
Best wishes, R
Twopies EileenH
Posted
That's the problem...I didn't feel good at the starting dose of 20 mg. had anaphylactic like reaction that sent me to ER where they said it was due to pred...swollen lips, red throat, couldn't breathe, etc., but not true anaphylactic reaction, just something they had seen before as a reaction to pred, they said. I had to keep taking it. Then horrible constipation (tmi!). Then something akin to crohns or IBS where I couldn't leave the house. Bleeding tears in skin. Globs of hair fallout. Was pmr better? Yeah. How much better? Well, I could get up, get a shower, get dressed on my own but to be honest, that's all I remember. I think I felt better around 6 mg in terms of energy and ability to move about, walk a little, before I did myself in by tapering to 4.5 mg too fast. Eileen, I'm still trying to figure out how long that piece of string is!
EileenH Twopies
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What other drugs are you on?
Twopies EileenH
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Absolutely none. Terribly intolerant of drugs. Very pleased I've been able to handle the pred as well as I have.
amkoffee Twopies
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Twopies I've suffered with lower back pain for 13 years. So I'm familiar with chronic pain. So I know a little bit about pain and energy and the ability to do anything around the house.
Those of us who have chronic pain often document our pain levels and flares to report it to the doctor. If you have a smartphone or a tablet you will find that Google Play store has several apps available for recording your pain levels. I don't have a favorite, you might just try them out and see what you think. Try a search for pain Journal.
eddylynn36538 Twopies
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When I saw my rheumatologist last month I was on 7 mg. I don't see her for 5 months as things are going quite well. She suggested I stay at 7 for a couple more months and wouldn't be at all disappointed if I was still on 7 when I see her in January. I will probably try to go lower at some point but it doesn't bother me to stay here for awhile. My fatigue comes and goes but I'm retired and work at my own pace. I'm a 11 year survivor.
Twopies Rudivl
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Rudivl,
i hardly have words for your kind and thoughtful response--I can certainly relate. Some days I can see myself overcoming this, other days absolutely sure (and scared) there is no end in sight. Ive read and re-read the zero club posts to gain encouragement....
in 2 days we leave for our winter home in Florida where I've had to accept I likely will be sedentary again, just like last year. Depressing, since I was pretty sure I would be well and running road races in a year (exaggeration to express a point!). Found out it doesn't work that way most of the time...my heart goes out to you and everyone else on this forum; as you say, take one day at a time and count your blessings. Gentle hugs for you....
EileenH Twopies
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But you SHOULDN'T be sedentary - moderate suitable exercise is one of the best things you can do. I know walking can be difficult in the USA but you should try to find pleasant place where you CAN get out of te car and go for a wander. It makes a major difference to the stiffness and also the fatigue - yes, I know that sounds counterintuitive but it really does work. You will probably be tired at first but by building up slowly you will notice a big difference. I always feel worse when the weather has been bad and we haven't had our daily half hour walk.
Twopies EileenH
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I DO try to walk on days that I can...most discouraged because most of the time I am physically unable to do it 2 days in a row which just kills me because I love to be physically active. Yesterday for example I went only 1/2 block, that was all I could do--just exhausted and stiff. Today I will try to go around the block, maybe twice. On a rare day I can move more, but usually not two days in a row. I'm at 7 mg., not sleeping at all, constipated, brain fog, shaky, etc. (pred kills me) when I was at 6 mg., and then 5 mg., those symptoms were better, and every once in a while I could walk a total of 3 blocks, and I got out more. But then I crashed at 4 1/2--went down too fast, didn't stay at 5 for awhile like I should have. Just missed my husband's birthday bash because I was too wiped out. In another week I'm going to go to 6 1/2 using dsns and I'm staying at 6 1/2 for 30 days (longer if necessary) before going to 6 and I'm keeping a journal. See what a fast learner I am? 😋