Hello all , first post on this forum so please bear with me.
I am a 54 year old male, Married ,children ,a career firefighter ,foster parent and until PMR very active.
Aprox 6 weeks into my PMR journey now and am struggling both physically and mentally .
The 3-4 am onset is doing me in at the moment, making me rise from my bed as too painful to stay, I have been put on 15mg of prednisolone which I take with breakfast around 7.30 each morning, but it is usually early afternoon before they really kick in and I can have a "Normal"day. I have read on this forum of people taking meds early morning to combat this, should I try it without consulting the Dr or would a higher dose be more beneficial ?
Also ,being a "do`er" ,when I am feeling OK I get the urge to get a few jobs done but then the next 2 days I seem to be back to square 1 ,is this normal ?
I am really worried how this illness is going to affect my job long term as it seems to have a strangle hold on me at the moment and I see little light at the end of the tunnel.
Thank you for reading.
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firesetter
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I DO feel your pain and discomfort. The entrance of PMR into our lives is devastating, at first! You are at the beginning of your journey and the most difficult thing to learn is "acceptance"
The time to take Pred is different for a lot of us. Evidentially taking it at 2 am is the recommended 'best' time (but I certainly couldn't do that - I'd never get to sleep again)! I always took mine at 10 pm and it helped during the night and early morning.
Although a "do-er" you MUST pace yourself. Rest whenever you can.
Take care and best wishes. 🍀🍀
Constance
Hi firesetter, it sou ds like you are in a bad place. There are a couple of question in there so. Bear with me. Dealing with the part about being a doer. I afraid your overactivity on good days makes you have bad days. It's the nature of the illness at first. You should halve the activity on good days and see how it makes you feel the following day. If you are overtired, then I am afraid you need to cut back again. Rest rest rest for a week or too. Its a serious systemic illness. Your body get tired and besccause the inflammation impacts the vascular system and therefore even a short wLk can feel. Like a marathon. If you have had good days the pred is working. Lots of peoe take their pred around 2am. That means they hopefully kick in for rise and shine time. Doing a low carb way of eating might help the sugar spikes that pred randomly causes. They are energy zappers for many.
Like I said good days means pred is working, it's up to you to get enough rest and eaT right. But that won't last. You need to read skinny jonnys story. He was a fire officer and was severely disabled... At this moment he is flying out to do a mountain climb to raise awareness of pmr. Read his profile first and then his current challenge. I hope his story gives ayou a light at the end a the tunnel.
Dear firesetter, I'm sorry you find yourself on this difficult path... it sucks!!!! You are a newbie and you may have a long road ahead of you. (Sorry, just being honest!) I too was "Do'er," and boy did that have to change! I was my biggest problem!!! Overdoing it when I felt good and then suffering for days, because I just did too damn much. They say the trials and tribulations we face in this life are the teachers of some of our greatest lessons... Well, if my GCA & PMR have taught me ANYTHING, it's how to put myself first, how to be at peace doing nothing and patience, patience, patience... I'm still learning but, I'm on the right path! Try not to stress about how or if the illness is going to affect your job long term... you have no control over that and worry and stress are NOT your friends. Best of luck...
Most of us here are (were?) doers, and we have all been guilty of over doing it on good days and then paying the price. The most difficult thing we all have to overcome is acceptance that we are ill and it takes time. You will find a pinned post advising you about how you stand with work which might help you.
Reading your account I wondered if you were on enterric coated pred. These protect your stomach as they are absorbed in the gut, but they do take longer to have an effect, with me it's about 6 hours and might account for your delay in relief.
The other thing that strikes me is that 15mg might not be enough for you have you had a blood test to see if the inflamation is under control? We are not all the same and have different needs.
Hello, 2.5 years ago I was a 54 year old “doer” with a list similar to yours of commitments when GCA came into my life. My first thought was, are you on a high enough dose (15mg is a starting dose) and secondly, are you taking enteric coated Pred? I’m afraid this is a condition where you cannot carry on as you were, hoping the Pred will prop you up. It’s only stopping the inflammation from doing harm while your body decides when it will stop attacking itself. It will get better but I’d advise you to really look hard at seeing where you can pare down your activity. As the dose goes down, the stimulant effect reduces but lack of sleep is a common issue. Mentally some of us find Pred adds to the blow of being cut down and I think sometimes we over do it as compensation when we feel half decent. So, it’s tough right now, but with some hard decisions and a bit of meds tweaking, it should become easier.
Hello and welcome firesetter! This forum is the best thing that happened to me upon diagnosis and it carries on teaching and supporting me today - almost 4 years on.
I agree with those who have suggested that you may have needed a higher start dose to obtain maximum relief from the pain and stiffness that PMR causes. Normal start doses tend to be 15 , 20 mgs or 25 mgs. You should expect at least 70% relief of symptoms. I did try the 2 am dosing but didn’t find the relief obtained, justified the interruption of sleep - it was negligible. It is impossible to carry on with an extremely physical job with bursts of high Adrenaline stress whilst suffering from PMR - it will just become a vicious circle of pain and flares. You need to have a full and frank conversation with your employers at this stage. I am imagining and hoping that they are good employers with equality and diversity policies that protect people who become disabled in the line of duty. No doubt, in my mind, that the stress of the wonderful job you all do contributes to the development of Autoimmune diseases. Hopefully you can be offered lighter duties for the duration or retirement on health grounds. I am glad Poopadoop has shared skinny Jonny’s inspiring story. You are probably in great need of inspiration at present.
Come back to us with your specific questions. Someone always answers you in a really supportive, informative way. There is a wealth of experience and wisdom to draw upon.
Hi Firesetter, you have gotten good advice here already.
While we are all different, I just want to put in my two cents worth that since Jan 2018 when dx'd wi PMR, I have taken my uncoated Pred dose at 2am with a snack size unsweetened apple sauce. I am a good sleeper, however, and almost always go right back to sleep. I go to bed around 10pm and awake ready to start a great day at 5:30am with little PMR pain.
Sent you a PM and also, there is light at the end of the tunnel................we just do not know how long that tunnel is................but it is there and being male, with a bit of luck, fair wind the he knowledge you will gain.................remission will come.
Take your pred at 3am, optimum time for it..............normally your adrenals glands would be making it from around 2.30pm.. ready for the next day.........so tea, bread or yoghurt, never on an empty stomach, swallow and then lie down and sleep. No good sitting reading...........if you cannot sleep, earphones and listen to a boring programme on the radio...............when you wake up, warm shower, forget the soap.
You’ve had good advice so far, and as suggested please read up on SkinnyJohnny. He will hopefully inspire you - and shows what can be done.
This might also give you a general insight into your life for the next few years - good news is you’re young, male and obviously very fit so your experience with PMR may be easier than a lot on here -
One thing you must get your head round is pacing - you can't go at things as you did, all that will happen is you end up with permanent DOMS (delayed onset muscle soreness) because the pred is only mopping up the inflammation, the actual disease isn't touched by that and is still chugging away in the background, attacking your muscles and leaving them intolerant of acute exercise. DOMS develops to a level you aren't used to and then takes much longer to resolve than when you are healthy. You are never really recovering - and that has to change to get through this.
Have you been able to discuss this with Occupational Health at the brigade? They may be able to assist with appropriate management, as they did with John.
Yes it does. I seem to be in constant pain these days too and it is often an effort of will to keep my head above water. Yet on holiday with my grandchildren from Australia, in sunny Spain, I almost forgot that there was anything wrong with me. This has led me to wonder whether wet, cold, weather and low mood, play a bigger part than I supposed.
Sorry to hear that you are often in pain SJ - but please your Grandies and the weather must have cheered you up - I am sure momentarily 'forgetting' pain is very good evidence of being very happy and engaged with what you are doing ! XX
I was inspired to do a lot of chasing, bending and lifting, as well as the saving of the lives of small reckless boys . It was great. I’ve slumped back here though. We really need to be strongly motivated to get going again, I mean properly, it hurts for one thing. Thanks Rimmy, it’s good to know you are out there! 🙃
Hi Jane - you sound like me when I get with my Grandies - or at least how I used to be as the eldest just turned 14 !! and he and his brother are more 'sedate' with those screens these days. My granddaughter still runs everywhere at 11 but that will soon change too I suspect. Anyway I am fortunate to be wellish at present - tapering VERY slowly and now at 11 mg am starting (finally) to be a little slimmer and feel more energetic. Still coming up to 3 yrs with PMR/GCA I have no illusions it will be 'over' for a wee while yet - any strenuous activity (and we still have our wee orchard/farm) and I am rather sore with the dreaded 'DOMS' for a day or three - but what the heck I think it generally does me 'good' and I like to pretend I am not 'old' yet (ha ha !!)
I agree that when having fun or being engrossed in something it is possible to feel better and when hanging round the house bored a person notices every twinge.
Wonder if 15 mg. Is enough Prednisone. I was diagnosed in January by a great Rheumatologist at Marshfield Clinic. He stared me on 20 mg. I have gotten down to 4 mg and feel pretty good. Still need to nap. I am in bed at 9pm. Get up at 5 am take my Prednisone. I need to pace myself. Stress is awful. Good News is this is not fatal, but I found it to be incapacitating. This past 9 months are a blur of fatigue. I say “NO” to almost everything. My to do list is waiting. It can all wait!
Hi Firesetter, it's a scary journey but no worse than you have dealt with in your job. I've noticed that men seem to get rid of pmr quicker than women so that's on your side. You will get there but you cannot push through pmr. Your body will kick back. You'll need time to adjust to the steroids then will get on a steady road while pmr burns itself out. You'll get there and this forum is a great source of knowledge and support.
Many have already responded with great support and suggestions.
We’re you ever mostly pain free on your starting dose. As mentioned, perhaps you need more (I am overweight and started on 20mg that gave me about 85% relief from painful symptoms and stiffness).
I also found the complete morning a struggle so I started splitting my dose to get more hours pain free (with my Dr.’s approval). Also we do not have coated pred here in Canada, so I spent a number of months trying to wake myself around 2am to take 2/3 of my dose, while taking the other 1/3 at around noon with lunch.
Now I’ve purchased empty coated capsules so I take 6mg stuffed into the capsules around 11pm and 4 or 3.5mg uncoated at noon. This works well for me, but each person is different, and it takes time, patience and exploration to “solve” the puzzle.
I also started deep water exercises once a week, and worked my way up slowly with physical activity. 1.5 years in and I’m managing so much better than the first few months. I now golf, play pickle ball, walk and do deep water exercises (not swimming laps). Take your time increasing activity, rest in between, balance is key.
Lastly there is the mental/emotional impact of wrapping your head around having a chronic illness. I had just gotten married, retired and moved into a new house/community, and when PMR hit at age 55, I was mad as hell! I went through stages of grief and experienced feelings of denial, panic, anger, fear, but finally came to accept my condition, and with acceptance came peace.
I made necessary adjustments accordingly, and began to focus on what I could control (diet, activity, rest, who I got support from, etc). Now a year later or so, I’ve lost 30 lbs. and kept it off and I’ve a adopted a healthier lifestyle.
Given your profession, adjustments will likely need to be made until you can slowly build up your activity level. I did way too much in the first month diagnosed and prescribed pred, in part because I had suffered so much for the 5.5 months prior, I was just so excited to feel “normal” again. But boy, did I ever pay for it.
We are here if you have questions/concerns along the way, or if you just need to vent. We will “get it” more than others because we have a lived experience of PMR/GCA.
Just a little quick background on me. I was diagnosed last Oct with PMR. I am a full time professional firefighter/Lieutenant in operations. I was diagnosed at 54 also, and like you, was concerned with my career. Here is what I've learned this past year;
1. This is by far the best website to glean information to use.
2. This doesn't have to end your career, but it does change how you do things.
a. I went from a one hour a day heavy weight work and an hour of cardio, to 1 hour body weight and flexibility workout to help keep what I have. I also try and get a nice walk in.
b. You have to be easy on yourself, realize that your not going to be able to do the same things as before. I use to work a lot of overtime and extra shifts to get my top five. I don't anymore. I just work my normal shifts. Try and take at least one vacation day a month, just to give me a break.
c. Eat healthy, no sugars, or bad carbs. Try and eat whole foods, no preservative type foods.
d. Get plenty of sleep, especially when you're not at work, cause you don't know what you will get at work.
e. You need to pace your off shift activities. (This is a challenge) but as you are finding, when you over do, it takes you out for 2 or more days. So it is important not to plan much the day before and the day after a shift.
Now to address how you are feeling presently. I started at 20mg....it sounds like the 15mg they started you at isn't enough. I find that the doctors in the states are super conservative, so you really need to advocate for yourself. You shouldn't be sore in the morning, especially with your first dose at diagnosis. Also I find they want to taper you too fast. This site, and the moderators are experts on the tapering, so read their suggestions. If your doctor still wants to taper you to fast, remind them that you still need to be able to work, and that you don't have the normal job.
First of all. Hang in there. You'll learn a lot coming to this site. Second, everyone reacts differently to PMR so keep searching. My experience after I've worked down to 10 after two years is that I do best with 5mg in am and 5mg 12 hours later. The only new problem is not sleeping as well. But I've been pain-free for about 6 weeks. Also, my doctor (in Colorado) lets me regulate the prednisone myself so I base what I take on the level of pain I'm experiencing. SLOW, SLOW, SLOW works for many.
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