Fatigue and aches creating back in
Posted , 14 users are following.
Hi All
I'm down to 12mg and up until a few weeks ago was feeling ok but am feeling now as if I am running on empty. Is this because of PMR or the reduction of pred? I have beginnings of muscle ache in my upper back and can feel soreness in my neck. It is not bad at the moment but it is there. Do I stick on 12mg and hope if settles down or continue with the slow reduction to 11mg because this is just how I am going to feel as I reduce?
I feel a fraud because I am not as bad as some on here. I am working and do not feel I have to stop and rest during the day but just feel tired all the time. I also feel that it would make no difference if I went to the gym or not. My body seems to be saying no, my head says keep going. Sorry just needed to get that off my chest!
0 likes, 27 replies
EileenH elizabeth40672
Posted
Nick has said the rest I would have said.
Michdonn elizabeth40672
Posted
Hi Elizabeth, I am at the same dosage as you, but I will not reduce if I have any PMR pain. I try to listen to my body. I am using a modified DSNS method. 1-4 at this time, will go to 1-5, then 1-6, which is DSNS.
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose,1 day old dose
1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
At this point see how you feel, it great I am going 1-5 for the next reduction, but if I have discomfort stay at this I feel good. My Rheumy and I will disagree again, but that's okay as long as I can get the Pred. Good luck, hope the rest of your journey is better, think positive and try to smile. Smiling 🙂
Bethune Michdonn
Posted
Thank-you! When people say they dropped down a tiny bit on pred. And are reacting but not sure if it's just an adjustment or too low a dose, how long do they give it to decide whether or not to go back up?
Went to rheumy, got off Cimzia, went on a "diuretic" diet, cabbage, spinach, mushrooms, garlic, peppered, fennel, etc... No salt, no sugar, no popcorn, and lost 4 lbs of water retention in 3 days. Feel much better. I'm on nothing but 25 mg of pred. and supplements, fish oil, Calcium, VitD, Vit.B., biotene, and probiotic. going to try DSNS METHOD, with no other biológica as I've had troubling side effects from them. My doc would have me go down quicker, but she is kind and reasonable and will not disparage me for going slowly. RA and bloodtest numbers which are almost always good complicate my DX and treatment.
Everybody's stories and advice are very helpful. It is both supportive and full of information. That's why I included so much detail. Thanks and good luck and heartfelt encouragement to all.
elizabeth40672
Posted
sandy08116 elizabeth40672
Posted
Hi Elizabeth - can't speak for PMR as I have/had GCA only. Doctors told me there will be a surge in side-effects each time prednisone is reduced. They are right, it's not a return of GCA, there is an inner adjustment going on. None of the surges are major and settle after a few days.
I stick to their reduction plan of now reducing 1mg per month. And never had any problems.
sandy08116
Posted
Oh hell. I am the first to bite heads off if someone uses 'none' (not one) as a plural!!
Sorry. When is this site going to allow editing???
'None of the surges is major'.
Kassiebeetle sandy08116
Posted
I debated whether I should reply to your comment and decided yes. There are 5 siblings in my family. My elder sister died from Multiple Myeloma, I have PMR, next sister down also has Multiple Myeloma, the youngest has Breast Cancer and is almost blind from Chemo complications , my brother is a recovering Alcoholic and drug addict.The younger sister had 3 children sadly 2 of those children died at age 17 and 24 respectively. In the scheme of things, grammatical errors don't come close to deserving being even a tiny bit upset. We all understood what you meant and that is all that matters. Cheers Kath
sandy08116 Kassiebeetle
Posted
Thanks, Kath. As a former (daily) news-desk sub-editor, guilt is entrenched!
But, you are right to put it into perspective.
Geez! That's an awful litany of tragedy in your family. Wish you and your family strength!
Cheers
Bethune elizabeth40672
Posted
Does resting help? I have not found that slowing down helps. There have been a few times where overwhelming fatigue has forced me to slow down, but I did not actually start to feel better, from resting. I generally feel better when I am most active. Anyone else respond this way? Perhaps it's emotional: the ability to be active = happier/distracted from symptoms. But resting does not seem to decrease my muscle aches at all. Wondering if others muscle aches actually improve with rest?
EileenH Bethune
Posted
Muscle aches due to overdoing things ease with rest but it must be long enough - it is far more effective to break tasks up into small bits and rest in between so you don't get fatigued in the first place. The fatigue of autoimmune disease is a fatigue that doesn't improve with rest. That is its definition.
elizabeth40672 Bethune
Posted