hi,
i was diagnosed with this and have been off work now since the 26th September. The pain now is only slights hanks to the steroids but I have no energy and frequently fall a peep mid afternoon.
I would like to get back to work and feel at times that i am being lazy even though I fall asleep mid day and when i go to bed at night I wake up early.
has anyone the same experiences and how long befire the lack of energy goes away.
Any advice ice would bet much appreciated.
I am falling a sleep and waking up all during the night and getting up early. I think I am doing this because of the steroids, and pain also. I am hoping the Acterma infusions will help as I have a few more. It's the most horrible thing r to live with. I hope you can find away to treat your and get it in remission soon.
We have ALL had these experiences, and worse! As for "how long does it take before the energy comes back" try 1 - 10 years!!! Please read the multitude of topics on this site but don't get depressed - you may be one of the lucky ones (you are obviously young if you are still at work). Good luck. You will always have help from members of this forum.
Morning george. just a quick yes to your qc, fatiuge is the norm on this strange journey. i have had it from day one 15mg now 5mg still with fatigue.I am pretty sure the cavalery will be along to give you more advice.I wish you well for your journey.Dave.
Hello George, welcome! As with most of your replies I hope you have worked out that this condition and its medications effects us all differently. I can wake up from the most fantastic nights sleep only to be exhausted, I lie in bed for maybe 15-30 minutes more really exhausted then all of a sudden feel bright and breezy and can't image what has changed within that short time to change how I feel, so I leap (well, not literally) out of bed and I'm great for the rest of the day. But most of my days I'm ok but go to bed early then rise early. And that's something I never did before I got this condition. I look on this condition as a waking up call that I was doing far too much and my body is now telling me to calm down. Maybe you could look at it like that instead of beating yourself up and accusing yourself as being lazy! Regards, christina.
George,
You are in the very early stages following diagnosis and fatigue is unfortunately a very common symptom of this illness, due in part to the inflammation and partly to the steroids. As you reduce the steroid dose you will gradually find the fatigue lifting. If you do not already take your complete steroid dose early in the morning, then that can be a reason for more lost sleep at night.
We have come across many people still of working age when this condition strikes, who have a considerable period off work and then return firstly on a part-time basis, gradually returning back to their full hours - perhaps this is something you could consider.
It's difficult to answer "how long before the lack of energy goes away" as we can all be a bit different in the way we respond to the illness and the steroids. BUT you will gradually return to your old self. Unlike some very unfortunate people with other illnesses, PMR is something from which we can recove. Yes, life-limiting for a while but not life-threatening.
Try and make sure you have a little walk in the fresh air each afternoon - that can help with your sleep at night and also boost those feel-good endorphins.
Stay positive - the important thing is that at least your pain is much improved already, and long may that continue.
I meant to add that if you drink coffee, make sure it isn't late in the day.
Thank you Constance6632, as a 49 year old single parent to four kids I was worrying that I was just being lazy which is not like me. It's comforting to know others have the same experience
Thank you Dave, it has been uplifting to hear from so many people so quickly.
thank you Christina, it's good to hear back from you and everyone else so quickly and also reassuring.
thank you very much for your insight, it has been good to speak to people with the same condition. George
i usually only drink coffee in the evening but will change that now. Thank you again.
The lack of energy may not go away for a long time I'm afraid - the pred works on the physical symptoms caused by an underlying autoimmune disorder and that is what causes the fatigue, it is another symptom.
To a great extent it depends on what your job is. Can you arrange for graded return to work? You may also find the fatigue improves if you rest more - actually plannign a rest in the earlly afternoon may make the rest of the day more normal.
Do bear in mind that you may feel not too bad while at home but the effort of work may be a totally different matter. Many people comment they don't know how people work with PMR. I did - but all I had to do was get out of bed and sit in a chair in the office in the next room. I'm a freelance translator and while occasionally I would work up to 12 hours a day to meet a deadline I could stop and rest any time I liked. It's rather different getting up, dressed, commuting and then doing a day's work - but if your employer is willing part time might be an option. However - bear in mind that being "on the sick" and going back part time makes rather a difference to benefits and pay in many jobs.
And having read your comment about being a single parent with 4 kids - I don't think anyone who knows anything about PMR would accuse you of being lazy! Just the THOUGHT of four kids with PMR makes me feel tired! And it MAY be the cause of your fatigue - because there are a lot of things you must be doing that most of us just ditched, putting ourselves first!
Thank you Eileen, I was pushing myself to go back to work on Monday I am re-considering this now in light of all the helpful responses I have had. Thanks again. George
Well said, Christina! We all did too much at some point before PMR. It is time to calm down and take these periods of rest. I am up at 2 a.m. after taking my 15 mg of Prednisone. I am hoping and looking forward to a good and fairly pain free day.
Well said, Mrs. O, I still struggle with the life-limiting aspect --- such a change in all our life -- but thankfully, not life-threatening.
Do you mean you are getting up to take the pred Erika or is that when you wake after taking pred in the morning and it making you sleepless?
Thank you Cheryl
Welcome to the forum. I'm sure you realize already that you are not alone here. It is a wonderful source of information and support.
when I was first diagnosed with PMR I was working full time. I used some "holiday" time when the pain got to bad
Once on pred I found I was just to exhausted to work a full week so started working a split week with Wednesday off. That worked better for me but eventually I was able to retire a bit early and now take afternoon siestas.
Having 4 kids is a full time job in itself and it is really important to be kind to yourself and listen to what your body is telling you. If you push to hard the PMR will push back harder.
I agree with Eileen about checking about benefits etc.
Take care, Diana