Is it old age, pred or pred withdrawal? I'm tired all the time. I sleep 9 or 10 hours at night (except for loo visits), have a nap in the day, etc. I go out at least once a day for some fresh air - what else can I do? Excercise is "wobbly", walking hurts (PA)!
C. 🥴🥴
Do you have a regular nap? It saves me and isn’t it quite common in Southern Europe ? I do think it comes from adjusting to less Pred not our age. It might be worth having your nutrient levels checked.
Germans, however, have a fit at the idea of siesta! Constance lives at about the same latitude as London which isn't really south enouth ...
I live in Sheffield and allow myself a guilt free siesta - that’s what I was trying to suggest to Constance in Germany. Too much work ethic and guilt in the North. The body needs what the body needs. 😉
Many of my friends in Hamburg used to have a Mittags Schlaf and when we lived in Duesseldorf the byelaws stipulated that no loud activity be undertaken between 13.00 and 15.00 hrs. Seems quite similar to a siesta to me. Perhaps things have changed but knowing Germany that seems unlikely.
Oh yes - the midday Ruhezeit was definitely a "thing" when we lived there. I didn't know anyone who actually slept except kindergarten children though! But then - they were all working.
Things have changed a lot - shopping hours are more relaxed and sometimes you can even shop on a Sunday. Not so next door in Austria though!!!!
Several of my friends used to take the opportunity to have a nap when their kids did - mine would never go to sleep to give me that opportunity. Glad the shopping hours have changed somewhat - I was always forgetting whether or not it was a 'long' Saturday and ended up being without something essential for the weekend.
Not very often here in the country (shopping hours)! Perhaps it's different in big town.
The rules haven't changed, but only very few people stick to them!!!!
I suspect it will all balance out. If you need the sleep you need it. I am waiting for another spell of sleeping. I had the dozy days a few months into 6mg but then it passed. Do I remember right you were having to take codeine before because if you are that will knock the stuffing out of you.
I am now on 4mg Pred (have been for months)!
I do take cocodamol, yes. Need that too as I have inflammatory poly arthritis.
Ah well! That's life! I've also been suffering from UTIs since April - I suppose my body is "trying to tell me something"!😀
It's hardly surprising then. And yes it is😁
Instead of acting like your Human Alarm Clock , can I tuck you up for a nap in bed instead ?😋😘😘😘
You have the Dreaded Fatigue and all those infections mean you are not being able to get that energy back up to help kick those adrenals into shape to help you out.
That little bit of fresh air , even if it's sitting out will do you the world of good.
A bit of very gentle stretching to help the aches during the day , especially before eating .
Just that tiny bit of movement can help the circulation pump more and reduce the tiredness until you are well enough for bigger things.
Building up those nutrients and lots of fluids to help kick the UTIs to the kerb.
And as suggested, check up for your iron , magnesium , folic acid, VitD and VitB just to make sure you don't need even more help than the supplements you are already on.
Small light meals more often in a day rather than three meals , that won't make your system go into " rest and digest " mode so heavily that you feel even more tired and sleepy after food.
Sometimes sipping a cool drink of water when you feel Fatigued can make you feel more awake.
But it's the old story as you say , do what you can when you can , and until the infections are controlled and the adrenals pick up it's having to rest if you need to and that awful patient wait to feel more lively again.
Thank you for the "tuck me up".😂💐
I do most of the things you mentioned, but need that extra"kick" atm.
Nutrients, vitamins, checked by two doctors in the last couple of months. I eat very little but drink all day (not alcohol)!!!😂
My Nephrologist found E-coli in urine a week ago (STILL after 3 months)!! The damn thing is 'lurking' somewhere.
Ah well - off to my recliner!
C. 🍾🍸🥃
If you have an EColi infection you WILL feel whacked.
Tell me about it!!
I'd never suffered from UTIs until two years (when they first found E-coli). Now it pops up whenever it feels like it.
Perhaps it will 'pop away' again sometime.
Have they given you a specific strain of antibiotic straight off the bat because they know the potential of it being a return of E Coli , that works better on this bacteria , or have they been acting like "bumholes" and making you do the walk up the ladder of types of antibiotics before giving you what worked best before at a sustained level and a bigger dose?
I think they have given me the correct antibiotic - my Nephrologist is VERY thorough as I also have kidney insufficiency. The damn bug is just 'lodged' somewhere and hides for a while. I'll get the b....r one day!🧐🤓
Just a suggestion, but probably of no help to you....my sister with RA sleeps 12 hours a night, dozes in the day, yawns when talking to me...so I made her get her vitamin D checked...yes it was too low...her doctor doesn't like her asking for the test once a year!...but I make her.....she is given it for 3 months and they say that's enough...you are probably ok with yours...but just thought I'd mention it......we all maybe need different amounts....
Thanks Longtimer. I have taken vitamin D for several years now (on doctor's orders) so it can't be that.
Just make sure that it is included if you do have blood tests because I have it in my diet, and have taken Adcal for years...but I am at the bottom end of the readings...which does surprise me....just a thought....
Depends how much you are taking - I need more than the standard supplement to keep my vit D up.
Hi Constance
Have you had any routine bloods done recently, had you Hb checked? Might be worth a visit to the Doctors.
MrsN
Ha ha! I have been 'gone over"😂😂 by goodness knows how many doctors since April. Bloods done every two weeks atm. ESR rising, CRP OK.
Well, it seems you’ll have to go with the flow re sleeping. It’s good to get a good nights sleep & the ability to have a siesta is godsend. In my Granma’s house a ‘Wee Nap’ in the afternoon was compulsory 😉
Obviously SOMETHING going on ...
Bells ringing - have you reduced your pred dose again?
😂😂 No! Like a good girl I'm sticking to 4mg. I even increase it by 2 or 3 mg every now and again to see if it helps. It doesn't!!!
I thought we'd agreed on 5!!!!!! But if doesn't make a difference ...
I have fought this for four years. Talk to your doctor everyone is different. When I go down just 1 miligram a month I experience awful exhaustion. Also have had big setbacks with my pain. I evidently do not start producing cortisol very quickly. After talking with my doctor, we decided to go down 1 miligrams every six months. So far this is working for me. Most people can cut back quicker. Never feel like you must be like others. All our bodies react different to the withdrawal of prednisone. Luckily I have a very good doctor and he listens to what I am experiencing. If you do not have a doctor like this please find one. This condition is very complicated and can also cause depression and so much frustration.
I have had PMR for 7 years. I have an excellent doctor and rheumatologist.
🌺🌺
When I compained to my doctor that I was tired all the time she ran what she called the basic tests to find out possible cause of fatigue. My iron level was down again, but everything else was fine. So iron supplements in order for me, yet again, and I think they are helping. I have to take liquid iron supplements and it takes a while, but after a few months I'm feeling less tired all the time and I actually think I'm not nodding off as frequently as I had been! so it is worth a bit more investigation, probably, to pinpoint the cause.
OH has just had an infusion - some relatively new stuff that our hospital haematologist thinks is amazing. He does feel better and his Hb has gone up from 10.6 to over 12 in a month. Can't remember the name - it must be one of the ones mentioned in this article:
ncbi.nlm.nih.gov/pmc/articl...
Hi, cannot help but chip in re iron replacement
. During our stay and practice in Africa 1968 to 1990 (hospital work with OH) ‘ TDI’ total dose replacement with iron (imferon) worked like magic and was impressive for the patient. Never caused any problems and overcame the problem of not taking the tablets. Glad to hear that old things are making a comeback .
Thank you all for this wonderful forum, has been a life saver for me.
PMR and GCA since March 2018, now on 17.5 pred after starting at 60 mg April 1 2019 . Wish I had listened and acted earlier. 😳
On a lighter note. When my OH dozes off I have some soft foam balls that I throw at him. I know Bee has a gun that she uses to shoot similar balls at her OH, but I'm not that cruel. Either way I don't think we could reach you to wake you up!
I time table in an afternoon nap every day and find that stops me dozing off at other times, but if you have an infection you will be tired. It's probably a good time to accept that your body needs it.
Don't think I'd like ANY balls thrown at me!!😂😂
They are soft and my arms are weak so they don't hurt him, in fact they often go unnoticed!
It's not cruel to use a foam ball launcher , it's just that I haven't got the energy, or the aim that I used to have when I used to throw shoes at his snoring noggin!!
I wouldn't use it on Constance though , that would be cruel .
I wouldn't use it on the OH either , if he just snoozed quietly in the corner , but when your husband snores so loudly that you feel like you've just been deposited in an aircraft engine testing lab , and you can't hear the TV over the noise ( or even the low flying fighter jets from RAFValley ) you have to do something for your own preservation ..... and your husband's.
At least I haven't thought about using the crossbow .... Yet!!😋😂😂😂😘
😂😂😂
😂😂 Thanks for the "cruel". Perhaps if there were a few 'very small' stones in it that might possibly wake me up!
Actually feel a lot better in myself this morning. Must come from all your caring thoughts.
Thank you everyone.💐🌺🍀🍾🥃🍸🍷
Just thought I would add about my sister`s "normal" vitD readings...she rang her surgery yesterday after I told her to ask exactly what they are....they said 45....it should be minimum 50.....think up to 120......not normal to me!....she has now gone out to buy some....disgusting, I knew she wasn`t right....soooo tired....onwards and upwards...glad you are feeling better...
Even you couldn't reach constance!
I wasn't being nasty, but the question was "can anyone wake me up?" and for some reason it made me smile and remember the balls. I thought you'd be good at the job, with all your experience. No one would want to hurt Constance she's in enough pain already, but you do have a wicked playful streak that surfaces now and again, and there you are mentioning your crossbow and proving my point!
Swings and roundabouts this illness, at the moment I'd love to sleep for more than 4 hours and Constance can't wake up.
I know you weren't being nasty , the little bit of humour helped me smile when I woke this morning so thank you , and I was loving the image of us both trying to help Constance wake up with our foam balls .
As you say though , if we are already that Fatigued ourselves that we can't manage to get up and just kick our OHs awake , and have to throw or shoot foam balls at them instead, we would have no chance doing anything but joining Constance for a nap!
I did used to have a child's bow , with sticky ended arrows, that I used on the OH now and again but I can't even pull that bow string back enough at the moment for it to do anything but plop an arrow at my feet so the ball gun must do.
I do sometimes wonder whether my husband inflicted me with these Chronic Conditions just so that he could be woken up by being hit with a softer projectile 😕😋😂😂😂😘😘😘
These days I tend to hope OH will remain asleep. Never wake him up in bed!
Oh dear!
Mine is lucky he hasn't had a medicine ball dropped on him. Mind you a bowling ball could be useful as it has the special holes there to make it easier to hold and then drop!
Ladies, ladies!!😂😂
I think you just need to give in and sleep when you need it. I only get about 3/4 hours a night and then suddenly will get a night where I get none at all. Give inxx
Well!?? There's a bit of difference between 3/4 hours and 10/11 hours.😂😂
I might be old but I don't want to sleep my life away!💃🏃♀️🍾🍸🍷🥃
I understand there a big difference and why would you want to sleep your life away at any age. I used to take codeine for my shoulder issues and wonder if as mentioned earlier the cocodamol is having more of an effect than it used to. I found codeine had either very little effect on my tiredness or could make me sleep really heavily and still feel tired in the morning. Have you tried other pain killers? Maybe its worth asking your gp to if they can suggest an alternative pain killer.
I have tried many! I return to cocodamol very quickly, others upset my stomach too much - GERD!
I am happy with my cocodamol - I have been taking it for 5 or six years now (could be called an addict I suppose)! So be it! I take a maximum of three a day. I really do 'need' it for, as you know, I have inflammatory PA.
I understand taking pain killers long term. For my shoulder issues I take tramadol and it works well after a good deal of trial and error. If it stops working really well I go back to codeine. I think it's time to see your gp again,x
Yes , but yours is like mine for snoring and we would probably still be kept awake by the noise of the Darth Vader hiss even if we managed to shove the whole ball over their heads.
I have a question re exhaustion I notice many of you cut out carbs. So how do you maintain enough energy to get through the day and do enough exercise to manage muscle loss.
There are lots of different diets going on .
Some do the Mediterranean style diet with lower carbs and sugars but foods with Low G.I , and slow burning foods with higher protein , good fats and fibre, lots of vitamins and minerals and plenty of hydration , this is my preference.
Some choose to go further and do the low carb , high fat diet with more restricted carbs but the similar effect of getting ample energy from lower G.I sources of fats and proteins.
Others are on diets to lose weight with group s like Slimming World or Weight Watchers but again choose the options that contain less carbs.
It is simple and actually beneficial for general health to consume enough calories for energy required each day from low carb / low sugar foods , and it doesn't cause the sugar related health issues and spikes that cause Hunger that can happen on steroids or in many Western diets. Higher protein diets are also better for maintaining muscle.
How much exercise we can manage has less to do with not eating enough calories but how the symptoms are affecting your pain or Fatigue levels that day. Unlike with " normal" health , you cannot push yourself beyond the limits of where the disease has reached in terms of how much exercise you do. Forcing yourself to exercise at the wrong times , or trying to use it to break through Fatigue isn't right with Chronic issues , that often makes it worse and causes Flares.
Although some Gentle Exercise with Fatigue can help reduce the symptoms , the steroids effect has more impact on your energy levels than in other people.
Exercise intolerance is also possible with steroids because if how it effects our temperature regulation so pacing exercise has more benefit than rush to "feel the burn" , when you feel the burn with Chronic Illness it usually means you did too much and won't be able to cope the following day. Less is more , until more can be achieved.
Most of our Fatigue issues do not come from lack of calorific energy, or effort , but the imbalances in adrenals and hormones that can take place as one system of cortisol production has to wake up again to take over from the other. The tiredness on its own is often from drug induced insomnia at the other end of the Pred scale when on higher doses . Sometimes it's a combination of the two , weariness with pain or having a dip in mood from the daily grind of coping with having Chronic Illness .
Like with all Chronic Illnesses , PMR/ GCA can't be fixed , only made a little less severe, by just doing a little more if this , or eating the right sort of that , it has to be managed as it is not cured but limits itself until it goes away ( or with many other Chronic issues is around at some level for life).
Protein and fat ...
Luckily the human body is very adaptable and it is a myth that we require carbs for energy.
If you cut carbs drastically (to below about 25g utilisable carb per day consistently) your body actually changes its form of metablism to ketogenic and gets into a state of ketosis - NOT the same as ketogenic acidosis in diabetes which is dangerous. This allows the body to use the body fat stores and that is how weight loss is achieved. That is why we have fat stores - a development in evolution to allow the body can get energy even during periods of famine. Excess protein can also be turned into glucose in the liver by a process called gluconeogenesis, 100g excess protein could make about 50g of glucose but very slowly and it doesn't change the blood sugar level. In contrast, 100% of the carbs you eat are processed to glucose and send the BS level up immediately.
Dietary guidelines suggest 45 to 65% of calories be carbs - that means just over 200-300g carbs in a 2000 calorie/day allowance. It is generally accepted the the modern older woman who doesn't go to the gym regularly needs fewer calories than that - and it is dependent on height as well as activity level. For many of us, unable to do much exercise because of PMR or other disorders, it is more like 1500 calories per day. As we age our basal metabolic rate falls - that's the number of calories you burn just being, breathing, digesting, with no exercise - and so we need to eat less anyway as well as our exercise level is also probably falling. But we tend not to - and then wonder why we gain weight! And to lose weight the recommended amount of carbs is 50 to 150g per day - again dependent on a load of factors including gender, weight, height, activity level.
It is said the average American diet has 450g or more of carbohydrate, in the UK it is probably less although it is likely that financially poorer people eat a lot more carbs than well-off ones because they are relatively cheap. So it is likely that most people are eating as much as double the amount of carbs they really need but at best probably well more than double the amount their body requires to function well. Eating a quarter of our usual consumption of carbs is not going to hurt at all and we may not even lose weight on that.
And they mount up quickly, especially if you eat fruit: an apple and a banana alone takes you to 35g carbs! All veggies have some carbs, some more than others and when you eat prepared foods, most things out of a packet, there will be carbs hiding in there somewhere. Eggs, most cheese, meat and fish have no carbs - but the body can process them to make glucose. Milk has quite a bit of carbohydrate but is often thought of as a protein and fat food.
So cutting carbs doesn't mean you can't exercise heathily - in fact it has been shown that a ketogenic diet may be better than a carbohydrate loading diet in generating energy for athletes.
I have no energy till noon or after, till then I'd rather be in bed I'm so tired...once past noon and later in the day I have all kinds of energy, must be when the pred kicks in or something...currently down to 4mg on a sloooow taper from 20mg two years ago...more tired now in the mornings than when the PMR first came on...not as much stiffness or pain anymore just lethargy...
Has your doctor suggested a synacthen test to prod those adrenals and see if THEY are awake???
The lethargy is sometimes more difficult to deal with than the pain (or perhaps not)!?! We are all so different.
I agree. Fatigue/lethargy been a big part of PMR for me.
Hi, it is certainly complicated and as a somewhere between vegetarian and vegan there is often only one choice when away from home or eating out. I did buy some of those scales that measure carbs and protein ect in food but as an experimental cook I lost interest in continually coding new ingredients. i shall just carry on keeping the carbs down best I can. We try one carb per meal at home and bread only once a day. Unfortunately I don't like raw fruit. Exercise wise I like to push a bit outside my comfort zone, I am stiff and sore in the mornings but I am energized by it. my usual week if I am at home all week is a morning and evening 2-3K dog walk, two 45 min gyms per week and one really tough Pilates class. i am not losing much weight but I have strengthened my tendons and my core strength is very good, the only place I never hurt is my back.
Doing exercise is good at a level you can work comfortably in but my new really good physio whom has now requested for me to work with him on a book he is working on about our Autonomic Nervous systems ( the system that is mainly control of our release of Adrenal chemicals and responsible for Fatigue ) tells all of his clients that you should never work outside your comfort zone . He even throws people out or stops them in sessions when they are trying to push the limitations.
Working to your comfort zone , eventually moves the goal posts . You shouldn't move up to the next level of work until you feel like you are still full of energy and genuinely feel the physical ( not Mental) need to carry on and have no discomfort while exercising . It's a different mindset to the way we were brought up understanding exercise and why we do it , but it's a way of thinking that is really essential to maintaining your activity but reducing bouts of Pain with Chronic Illness or repetitive injury.
Working outside it , or pushing on , even if at that point you feel no pain , forces the nervous system to react in ways that it cannot sustain , it makes it send out pain signals for days afterwards because it wants to protect itself from activity causing growing inflammation.
In terms of losing weight , if you are building muscle from your exercise and have changed your diet, for a certain amount of time you will not lose weight , some people gain small amounts for a certain amount of time , because Muscle mass weighs more than the fat being lost. People forget that inches on the tape measure will often tell more about how well your body is doing than kilos on the scales. With Chronic illness sometimes those inches are also not from normal weight gain either , upto half a stone in added weight can be from inflammation and water retention rather than actual body weight.
Can we clone him. I have always gone on the principle that if I accidentally walk further than intended, and feel okay, then my body is ready to do more - that day at least!
He is as frustrated by Rheumatologists and Neurologists as much as most of us so I wish I could clone him for you all.
He is the only person working in the last few years that understands the connection between the Autonomic Nervous System and Chronic Pain and Illness , and doesn't understand himself why the people he works with inside the NHS have no knowledge of it and how important it is to patients to correct it.
If I hadn't met him , I would have nobody working on helping my Dysautonomia / POTS at the moment , and my disability levels would have continued getting worse at a much quicker rate.
He actually went up to Rheumatology for me to give them a kick to see what was going on and whom was going to be able to help me , apparently they had no idea and sent him on his way , they have no specialists in any of the Department's that deal with this side of medicine so have no idea how to help.
Until I go to the Autonomic Centre , I can't get any appropriate medical help for these conditions as few Specialists in the UK know how to test or treat this huge part of the body , if Beta Blockers don't work they are stumped.
There are only three or four centres in the UK that know how to examine the blood tests properly for the right antibodies.
Adrenal Medicine and Autonomic Neurology is seriously under investigated Worldwide.
It's shocking really when Neurology Units have no practitioners in one half of their Specialism which affects us all so much , especially those with Chronic Pain Issues like PMR or Fibro.
Think this deserves a post of its own.
Under what title , could someone please direct Bleary to the reject bin?!!😋😂😂
I agree re posting. As we know some people try and push themselves. I hope after over 15yrs of fibro I understand my body but knowing more is always useful!!
Too late at night for that for me!!!! Um ...
Yep , listen to you body Pro , sleepy time , tell me what you want tomorrow xxx
There is a specific type of anemia that goes with inflammatory disease. It is called anemia of chronic disease, or low binding capacity anemia. Your body has iron, but the cells don't take it up and use. it. Have your doctor o blood tests for these specific types of anemia, not just your iron level.
I had iron injections and they helped. But the secret is getting the inflammation down.
Just to clarify, a regular hematocrit may not pick up this type of anemia. Specific tests need to be done.
Increasing your Vit C , Vit A and essential minerals and amino acids is often what you need to help reverse anaemia of all types if you continue to have issues with iron uptake.
With certain types of anaemia , especially those of Medical cause , it's being deficient in the nutrients required to help the organs to process the iron rather than low levels in iron itself. In those circumstances you can increase oral iron consumption but still have anaemia.
For most people , creating an individually balanced diet and increasing hydration can reduce bouts of anaemia.
Other people with certain types of inflammation and Chronic Illness can have difficulty processing iron , even with the added nutrition , and until processing problems have been resolved that is when iron injected straight into the blood becomes important. It is the same processing issue that can cause the need for Vitamin B injections if you already have a balanced diet.
Methotrexate anyone?
Don't know what's happening to me........
Azathioprine anyone??
Can anyone remember where I left my hippopotamus?
Can you have a flare when on 1.5mg pred?
