I posted a wee while ago to say that I am in the process of undertaking research through university. I'm looking into the effect and treatment of chronic fatigue in auto immune conditions. In the first stage I have been asked to identify communities that exist. I was diagnosed as having Polymyalgia Rhematica, Giant Cell Arteritis and later after requesting a second opinion Fibromyalgia. By far the worst of the condition for me after medicating the pain was chronic fatigue. I had great response before saying that the good folk of this community would help me. So I would be grateful if it is not too much trouble if you could answer a couple of introductory questions I'd be so grateful. All answers will be treated anonymously and in confidence.
Most of the people I have approached in the Fybro community available also suffer from chronic fatigue. I wanted to find out if that is the same in the Polymialgia community. If you wish you It would be even better if you could state your diagnosed conditions and if yes or no to suffering from chronic fatigue. Thank you so much in advance for helping me on the beginning of this journey.
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Singr
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Piglette just watched that movie you recommended “Unrest” What a fabulous insightful film. Very emotional after watching it. There are key statements in it that resonate and hit home about what is happening to me. I feel like reaching out to that woman. It was very powerful. 😢 Thank you so much.
Lacking energy, too exhausted continue your normal daily activities. For me this does not happen every day but when it does I’m bed ridden and it can be for a day or two. I suppose the other part is when you are enjoying particular activities but you know you will crash and flare after. There may be cognitive issues too.
Thank you for defining. I have GCA and my energy level runs 50-75% less than what I was. My fatigue does respond to rest so I would say no I don’t have chronic fatigue.
Hello Singr, yes I have had PMR and in remission since February after two and a half years. Chronic fatigue definitely the worst symptom once the pain was under control. Good luck with your research.
Diagnosed with GCA and PMR July 2017. Had terrible fatigue until a couple of months ago. I am back on Actemra for a couple of months and fatigue is no longer. Currently prednisolone 9mg. It has been horrendous. Unable to attend family gatherings or any kind of event. I also have the shakes badly. Worse if I am tired. No change in them.
GCA, PMR 3 1/2 years. Yes, worse at beginning, napped in morning and afternoon on 30 plus mg pred. Now on 8 mg pred and "steroid sparer" can manage a short trip to the shops but will be exhausted next day. Try not to nap during day now to improve sleep at night but tend to drop off during the evening.
GCA, cyclical neutropaenia and fibromyalgia- cfs but nowhere near as bad as others report now; just a low level lack of vitality and muscle weakness, or is that it?
PMR and Sjögren’s, diagnosed 4 years ago. Extremely fatigued for the first couple of years: I used to sleep for a couple of hours, every afternoon. Improved, recently, but still overwhelmed, at times.
Have you read 'The Spoon Theory? If not just put that in your search engine and read it.
GCA only and yes, intermittent fatigue..............sometimes just had to sit down and sleep in the middle of peeling potatoes, you cannot just keep going, it stops you in your tracks.
Did it get better? However I still 'run out of steam' at times and I have been in REMISSION (not cured) for just over 7 years so I am 12 years older when first diagnosed. I do think that all auto-immune illnesses lurk but that is a personal opinion.
Hi, have had PMR almost 4 years. No other conditions. From about 6 months in having chronic fatigue quite frequently, linked to even the slightest amount of activity (eg getting up, washing & getting dressed often made me need a sit down). Worsened a year ago as I approached the adrenal glands issue, last summer I mainly lay in bed or sat in a chair with feet up. The fatigue would come over me in waves so that I felt as if I had to sit down before I fell down. Considerably better this year as the PMR seems to be diminishing and I'm down to 3 or 4mg pred - still often tired and can't do strenuous activity, but hardly and overwhelming collapse type experiences.
Yes it was getting undressed panicking as I couldn't get a t shirt off over my head. Ended up with several tops 2 sizes too big to get on and off more easily.
GCA. Now in remission (3years). Fatigue pre diagnosis, pre treatment (18months)- fine once on medication. Again at very low doses - but due to adrenal insufficiency rather than GCA.
71 year old female, PMR dx 6 months ago, was almost suicidal with the pain and severe depression. Now down to 8mg Pred, no CF at any point in this journey (yet). Can do all normal household chores, shopping, gardening etc, and continue to work for charity. Exercise is mainly just walking (apart from the gardening, grass-cutting etc). Also take meds for underactive thyroid, high cholesterol, high BP, mild osteoporosis, and low-dose HRT,and take supplements of calcium, Vit D, Vit K, magnesium, fish oils and a general multi-vit each day. Am watching my diet carefully, have not put on any weight (in fact, lost weight prior to PMR dx, and have not put it back), no "hamster face" or hair loss.. Current Pred-related issues are chronic insomnia, thin and itchy skin, some DOMS but no chronic fatigue. I find the "spoons" theory very helpful to prevent my overdoing it on any one day and thank this forum for all the helpful advice I read..
My deathly fatigue started when I became ill, along with all the pain and stiffness. I spent 4 months undiagnosed and remember that I couldn't change my duvet cover without collapsing for several hours. My daughter did it for me. I'm not sure what effect pred had. I felt it worked on the pain and stiffness but did not reduce the fatigue. One of pred's well-known effects, which I definitely suffered from, was insomnia and it was so bizarre to feel wretchedly tired and weary but unable to sleep.
PMR (15 years and 10 years on pred) and not really - only if I go to too low a dose of pred and allow the inflammation to increase AND overdo it On the right dose of pred and with pacing, fatigue almost never poses a problem. If I don't pace it can hit me like a sledgehammer and I have to lie down and sleep but that has happened maybe 3 times in 10 years and after being on the go travelling for 24 hours or so! It WAS a problem before pred though. I got 3/4 of the way down a ski run once and couldn't go any further! Took a 15 min sit before I could get to the lift to go home. Purely because I decided to have 1 more run on top of what I knew I could do at that stage of the season.
Fatigue is a component of almost all autoimmune disease - you might find the links here useful, especially the 13 types of fatigue one. It says Sjogrens but it applies across the board.
Read it and there is that word one more' 'cykotines' those little balls of inflammation, seems that they do play a big part in my old eyes...............
Thanks for all of that I totally agree about the motivation. Key issue. That will be the second part of the project into next year. Provided I get ethics approval 🤞
PMR and yes.....sister with RA and definitely yes!....if that helps.
Pmr—- waves of sleepiness that last about an hour. Am experimenting with b/ p checks as it is low at those times. Connection for me? Definitely lack of energy.
I watched lots of silly old films on YouTube and did endless knitting, including an adult-sized blanket. It was no use fighting it - just had to go with the flow... As you say sleep deprivation catches up eventually, and I would have a daytime ''nap'' of 5 or 6 hours, then start the cycle all over again.
PMR since 2015 and I would say that I get tired more easily relative to pre-pmr days , but I would not classify it as chronic fatigue. I used to train for triathlons before PMR with lots of hours of training, so now if I do couple of hours of biking I need to take a nap to recharge. Short version PMR and no chronic fatigue .
I disagree - and I will reply. I've thought a lot about all aspects of PMR, believe me.
There is tiredness and there is fatigue and there are many different sorts of fatigue as outlined in one of the links I quoted. Fatigue is there when you get out of bed in the morning after a normal day the day before and a good nght's sleep. That was there when I had PMR without pred, it is never a factor now. The fatigue I experience is the sort some call SDORD fatigue - sit down or fall down. And THAT for me happens so rarely now that I don't really count it. The motivation aspect, for me, is different, it has nothing to do with being fatigued - I just don't want to do housework for example but I would go out for a walk with a friend.
I would agree on the housework versus a walk - even gardening over housework. But that’s just me I think, not necessarily anything to do with illness - or maybe it is? Rampant osteoarthritis.
After running a house for over 50years, housework is so yesterday I find 😳
Yes I’ve experienced both but today experiencing the sit down or fall down or not able to move anything dragging self to the toilet one. But thank you so much for that. Your article may influence the second part of this study. I might have to drill down to types of fatigue and lay that out in my questions. Please don’t apologise for disagreeing it is important to unpack the issue. It helps more than hinders. I know I need to look at motivational issues for next part. Thanks.
By your definition of chronic fatigue "no.", however, I do become tired in afternoons and lie down for an hour or two. I am down to 4mg of prednisone since last December on 20mg. Tiredness could be due to age, I am 91. Sometimes find that when I have to go to gym in afternoon, appointment, afterwards I feel more relaxed and not as fatigued.
Hi yes. I have PMR/GCA and do get extremely tired but not all the time. It’s very much a struggle to climb the stairs when the exhaustion sets in. So sitting in the chair at these times is the best option.
Diagnosed with PMR in September 2017. Yes, fatigue was overwhelming for the first year, but now a lot less, and Prednisolone down to 2 mg. per day. Good luck with your research.
I have had PMR for 6 years with 3 failed attempts at tapering off steroids. Have never had chronic fatigue only severely weakened muscles mainly in the core body area resulting in a weak bladder and incontinence - the side effects of the steroids. In my opinion, the side effects are worse that the pain of PMR.
PMR 4 years. I have given up trying to live as I used to, pace myself carefully and have short nap in afternoon, but have never taken to my bed for hours. Know the must sit down now feeling well, muscles tire easily.
G C A Dec.. 2014 fatigue 12 months before diagnoses P M R June 2016 Fatigue continued until I reached 5mg now on 3mg I just have odd days of tiredness now..
PMR since Nov2014. GCA in Jan/Feb 2016. Before I developed GCA had CF at 11 mg (2015)which lasted a month. Then at 10mg I had to go up with pred to deal with GCA. I get fatigue if I don’t pace myself but nothing like that month in Nov 2015. I found it hard to do anything in the day, even wrapping up a parcel one day was just all too much.
PMR and tiredness but wouldn't call it chronic. Psychologically it seems chronic when I compare my previous energy levels with how they are now. Diagnosed in 2017, down to 2 mg of Pred but can't get any lower.
I have had PMR for 9 months at times have real trouble staying awake. I can fall asleep at breakfast having had a good nights sleep. Sometimes I stagger to bed not wanting the bother of undressing. I have an enormous lethargy. My legs ache if I take almost any exercise. I'm not sure if this counts as Chronic Fatigue Syndrome. We have just had people to lunch, I came into the kitchen when they left and fell asleep at the kitchen table.
Can I say something? Since I’ve asked this question on various community forums. A few people have been describing sleep issues like you say and later got tested for sleep apnea. Be careful, get that checked out even if just to rule it out. Sounds strikingly similar. Let me know how you go.
I was dagnosed sleep apnea. Since getting a CPAP machine I'm told it's all well under control, yet I still get chronic fatigue. Wake up tired even after a good night's sleep. I think I've alleviated some of it though low histmine, low carb diet.
PMR from Jan 2016 , not diagnosed until April , chronic fatigue during that period then started on 30 mgs and gradually fatigue reduced as I tapered down on Pred .
HI. I have diagnosed GCA July 2018. Now down to 3 1/2 mgs but stiffness and weak leg muscles a problem. I don't have chronic fatigue but I do tire easily which I think is not the same thing.
I do get fatigue but after reading all the replies mine isn’t chronic. For example, I am exhausted after getting up, showering, getting my breakfast and am ready to collapse into my chair. Likewise after shopping- have to rest before I can consider unpacking it, but I revive after a rest.
I am definitely going to explore defined levels of fatigue. I think there is a lack of clarity. If it impacts on your normal life and activities makes sense the fatigue is greater than normal
I have had PMR since 2011. Yes chronic fatigue is problem. I have instigated and LLD = a long lie down, in the afternoon. This helps, but it is infuriating that I cannot do all the things I used to (now 71). Have made several attempts to drop the prednisone dose (was on 30mg) but cannot get below 11.0mg per day without having worse symptoms as well as visual defects. A soluble aspirin helps when the aches get too bad. trouble when I have a good day then I do too much, and pay for it the next.
I had ME after a virus many years ago and PMR fatigue is very different. ME fatigue is not relieved by sleep. PMR fatigue is helped by rest and sleep, hence the usefulness of pacing.
Most of my PMR fatigue pre-pred was the same as ME fatigue (I'd had it 15 years earlier). There are various sorts of fatigue/tiredness. This relates it to Sjogrens but you will find most of them in most a/i disorders.
Elements of this study have been incorporated into my proposal. I’m so grateful for that. It’s something I can explore more fully if project approval given.
Yes that point is really opening things up. I need to incorporate the idea of different types of fatigue which might need different approaches. Thanks for that.
Fibro and PMR are very similar,as no doubt you know. Fatigue in both cases .I would advise anyone having chronic fatigue to consider having a blood test for Anaemia. I was diagnosed with GCA and PMR at the beginning of the year. For months I suffered chronic fatigue, even getting dressed exhausted me. At the age of 70, I can honestly say I had never felt so ill in my life. I joined a number of support groups over this time and was assured by everyone it was all part of PMR and suffered the fatigue for a couple of months. I managed to drag myself to the Doctor, who also put it down to PMR, to ask for a blood test for Anaemia. At this point I honestly thought I was dying. The results came back I was chronically short of B9 (folate). Three months of Folic Acid put me right. The support groups are great, it seems wrong to criticise, but sometimes they can be very misleading. I think people on them think I have an obsession with Anaemia, which I probably have because I was so ill, every time someone complains with Anaemia, I order them off for a blood test . 😃 The mistake a lot of people make is putting other illnesses down to PMR or Prednisolone. It ain't necessary so, as the old saying goes. Good luck with your research, Lord knows we need it.
Tell me about it. To be fair my EX DOCTOR did recognise PMR through the blood test and and the fact that Prednisolone relieved the pain. What she failed to do is recognise GCA, although all the symptoms were there.......sore scalp, temple pain, temples slightly swollen, jaw pain when eating, Anaemia, I had to ask her for a blood test and Peripheral Arterial Disease, although I mentioned my ice cold painful foot which got far worse as time went on, it wasn't until I insisted on her taking a good look at it that a couple of Doppler tests couldn't find a pulse in it. She had her mind made up it was all PMR.
I've done a draft of a letter of complaint (suggested by my new doctor) to send to the practice manager and possibly Cc a copy to the NHS watchdog. I do keep putting it off as at the moment I feel too emotional.
Understand that. It does infuriate me when everything is put down to a single cause - and a cold foot is pretty unlikely to be PMR. GCA and a blocked artery, yes.
These things tend to take us back there. Might be good to get the letter out of the way in order to move on from it. But I totally get what you mean. I delayed complaining about my original rheumy. I kept crying when I tried to write it out. I’m glad I did though. Will maybe prevent someone else getting treated like that in future.
That is a really good point. We were all around the houses before my diagnosis. I have a suspicion there are many people out there undiagnosed in some way. These things seem comorbid.
Hello. Yes, I am a chronic fatigue sufferer. After lunch, I have to lie down and usually sleep for about two hours. If I have an afternoon appointment, which is rare, I have to go to bed very early in the evening to catch up with myself.
PMR 2018, have days where I cannot put one foot in front! In fairness, I am a bad sleeper, so a bad night is followed by an exhausted day... On the rare occasions I do sleep a straight 5-6 hours, energy level is much better and a "good day" is productive and satisfying...
Currently just went back to 6 after 6 ish weeks at 5.5.... Was feeling very lethargic and had painful shoulders, groin and hips.... Amazing the difference .5 mg can make.... Now more comfortable, so will stay there until I see GP next month....
Just so you know I’m there with you. I started to have a flare yesterday. Slept till 3.30 pm got up and then returned to bed unable to do any of my assignment. Slept on and of for 24 hours and still exhausted. Hoping this lifts as my draft needs to be in by the weekend and while I am worried about timescale this flare makes me more resolute that we need more research, more solutions and strategies to help us.
This is so interesting. It's showing up that that chronic fatigue is not definite and the level of fatigue can be so different. Thanks for contributing.
That was so helpful and I have highlighted these aspects. Again this will inform the next stage of this project. The answers are informing what I need to ask in future enquiries and signposting what I need to search out and read for my literature review. Thank you so much.
So true but the fact it is subjective does not mean that it does not exist or is not worth getting more research, strategies and solutions for. We need to strive for some kind of categorisation and one of the responders has sent me something interesting about different types and grades of fatigue. Again, thanks.
It lifted at 1 in the morning and I could not sleep 🙄🙄🙄. I’m now on 7mg. You are right I might have to increase my pred until this deadline is passed. I haven’t stabilised since reduction this time.
Hi Singr am so sorry for you and your diagnosis. I hope you are receiving good care. With Polymylgia- in my case fatigue and muscle pain is predominant first thing. If I get up and keep myself busy housework, gardening, walking- I feel ok- rejuvenated Some days are definite duvet days. I am on steroids 10mg and tapering, multi vitamins and anti- depressants. Please feel free to involve me in your research. What causes auto-immune diseases?
Gladly Keep you informed. I’m discovering the reasons for onset could be as varied as the individuals themselves. There are so many factors I’m having to explore 1 area, that is fatigue. I’m going to collate all the responses over the next two days. Eek.
There is almost certainly no single cause of most autoimmune disease. It is a culmination of insults to the immune system - and while the same set may be found for more than one person, the order in which they occur may vary so that the final straw varies from one to another. So it might appear to be the flu vaccine or the flu or an accident that triggers the appearance of something a/i but in actual fact it is only a small part of the answer. For example - I had never had a flu shot before I had PMR so it definitely wasn't to blame for my PMR.
Hi thats really interesting. For me I think it was a culmination of stress , broken ankle, hot summer, and maybe post flu and pneumonia jab. Could it be the immune system over-reacting? Which brings me to my dilemma of whether to have flu vaccine this time? I actually saw a Rheumatologist last week. He said my ESR and CRP were normal and that I have a mild case of PR and to start reducing steroids. I am on 10mg now and will follow your tapering advice. Hope all well with you🌻
How does he know it is mild PMR? Another with a crystal ball. The markers being low just means you are on enough pred to keep them there. Mine have never been out of normal range - I've had PMR for 15 years.
Yes, diagnosed PMR few weeks ago, M.E. Diagnosed 2012, restless legs for over 40:years. Ulcerative Colitis since 2005. Back problems since 2008, spinal fusion, various other ops finally had spinal cord stimulator implanted in Jan this year. Couldn’t believe the pain after a couple of good months. In some respects I’m relieved it’s PMR rather than failure of the implant. Have tapered pred from 15mg currently at 10mg and seem to be back at square 1. I thought the fatigue from M.E was bad but since the lead up to PMR I’m completely unable to function normally. Getting up is sometimes the maximum I can do in a day. The sit down or fall down scenario is currently more often than not.
PMR and chronic fatigue. IMO if you have chronic fatigue you have something more than fibromyalgia going on, the doctors just can't be arsed diagnosing so say you've got fibro
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