Exhaustion -.how much is normal

SusiM

I know that fatigue is part of the package but lm exhausted to the point where ld happily lie down 24/7. I just did a half hour of weeding (something l would have done with ease a short while back) and l need to lay down and rest. It is muscle fatigue and sheer exhaustion. Is anyone else this tired? Could this improve once the disease is under control?

Mike1

20 mins to half an hour is my limit too (OA for over 10 years). Always tired and often fall asleep in the afternoon and early evening with only 3 or so hours at night. GP said as I can't work there is no problem with me nodding off during the day and will not give me sleeping pills. The excessive tiredness could also be an indicator of fibromyalgia so worth chatting to your GP, although mine said that it was a waste of time looking into it, hopefully yours is better.

stickywicket

How much is normal? When my RA was uncontrolled a lot In the early days I spent a lot of time in bed. In fact, my doc only allowed me out for a maximum of one O-level exam per day. My RA was noted on my exam papers which is possibly why I was one of few to pass my geography

I think you're due to see your rheumatologist soon. Have I remembered rightly? Probably your meds will be upped as the hydroxy alone is clearly not cutting the mustard. With luck you'll then start to get on top of the disease. I hope so.

Sorry, I meant to add this and forgot :roll:
https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-fatigue/

daffy2

Fatigue is part and parcel of the kind of conditions forum members have; it varies from person to person in terms of how badly it affects them, and for each individual it will often come and go, and vary from 'not really a problem/something I can manage' to not being able to function in any meaningful sense, depending on all sorts of factors.
So yes, what you describe is 'normal'. I'll leave others to comment on improving once the disease is under control, as mine is OA, and my fatigue comes from other causes such as fibro. Your experience of flaking out after a short bout of weeding chimed with me, as gardening is the thing which for me highlights how much fatigue now affects my life. I used to have 2 allotments and a garden that I could(and did) work on for hours at a time. OA and worsening scoliosis would have necessitated changes to that over time but it was fatigue that meant having to give up the allotments and rethink the garden. I've become much better at not comparing 'before' with 'now', but I still get very frustrated when the fatigue is bad and I can do little if anything, and that is something that I still need to work on, not least because being cross takes energy I don't have! Breaking tasks down into little sections and being rigorous about stopping in time - resisting the 'oh I'll just do that last bit' - to try and avoid being completely wiped out is the way to deal with it, together with not beating yourself up about it.

BettyMac

Hi SusiM

Sorry to hear you’re struggling. It’s so frustrating when you can see everything that needs doing but can’t summon up the energy to do it!

I’m not sure what kind of arthritis you have. If it’s RA, I think that if and when you get it under control, your energy will slowly come back.
The sad thing is that not all of us are lucky enough to get good remission. The disease varies so much from person to person.
In the meantime, don’t be too hard on yourself.
Do a little bit of what you enjoy - and stop before you’ve overdone it!

Good luck!

Callo

I get exhausted when I am stressed, slept badly, or the pain starts coming. I have rheumatoid arthritis, or juvenile RA, since I got it when I was 18.
The best way for me to control fatigue and exhaustion is to find something that takes the pain away, firstly. I started vaping cbd oil, 500mg. Three puffs, each held in the lungs for 30 seconds. I feel the effects immediately, the pain disappears (at the moment, the soles of my feet are the worst offenders) for about 24 hours. When I am exhausted I need more. I react badly to painkillers, as I also have really bad IBS, they tend to make the symptoms worse.
Once I am relatively pain free, I then try to mildly exercise, if I am super fatigued. If fatigue isn’t too bad, I do exercises that get my heart rate going. I went from being told not to do anything other than walking and swimming to body weight exercises and a weekly 10k running. That’s quite an improvement! I think doctors are slowly realising that exercise is very important to fight against arthritis. Exercise and healthy eating have been my saviours. Also, very little alcohol, if any at all. Alcohol makes the fatigue much worse for me.
However, I think it depends on what you were diagnosed with and what meds you‘ve been given. I went for half a year without any, really bad doctors who simply didn‘t care that my hands and feet were swollen and painful. Then the rest of the body came, I had inflammations all over, neck, jaw, all the way to the toes. I was then put into a clinic for a month and put on an excellent course of medicines, and from that point forward, started to feel better.
Physio at the very beginning is also important, so you learn which moves work against painful joints. If the NHS doesn‘t pay, spend the money privately, it is one of the best investments you can do.
I hope some of this helps? Nothing is as bad as the hours you feel like crawling under a rock, but remember, it is not always this bad, there is light at the end of the tunnel.

dreamdaisy

My normal isn't your normal. My normal varies from day-to-day, morning to afternoon, one moment to the next. What I once regarded as normal now isn't, what was once never considered as being normal now is. I hope this helps. DD

SusiM

Thanks everyone that helps me to know that what lm experiencing is normal for autoimmune arthritis. Sometimes l think there must be something else going on (and there might be) but its also a big part of what you all experience so I'll put it down to the arthritis being active.

SusiM

Mike1 wrote:

20 mins to half an hour is my limit too (OA for over 10 years). Always tired and often fall asleep in the afternoon and early evening with only 3 or so hours at night. GP said as I can't work there is no problem with me nodding off during the day and will not give me sleeping pills. The excessive tiredness could also be an indicator of fibromyalgia so worth chatting to your GP, although mine said that it was a waste of time looking into it, hopefully yours is better.

Hi Mike
Yes same thing with me...l fall asleep during the day sometimes before the mornings out. It does make sleeping at night a challenge. "A waste of time looking into it" - that's not caring or diligent. I'm on a Facebook forum for undiagnosed illnesses as l have all these other symptoms going on and l hear the worst stories about people's doctor's. It's hard to find quality GPs these days.

SusiM

Callo wrote:

I get exhausted when I am stressed, slept badly, or the pain starts coming. I have rheumatoid arthritis, or juvenile RA, since I got it when I was 18.
The best way for me to control fatigue and exhaustion is to find something that takes the pain away, firstly. I started vaping cbd oil, 500mg. Three puffs, each held in the lungs for 30 seconds. I feel the effects immediately, the pain disappears (at the moment, the soles of my feet are the worst offenders) for about 24 hours. When I am exhausted I need more. I react badly to painkillers, as I also have really bad IBS, they tend to make the symptoms worse.
Once I am relatively pain free, I then try to mildly exercise, if I am super fatigued. If fatigue isn’t too bad, I do exercises that get my heart rate going. I went from being told not to do anything other than walking and swimming to body weight exercises and a weekly 10k running. That’s quite an improvement! I think doctors are slowly realising that exercise is very important to fight against arthritis. Exercise and healthy eating have been my saviours. Also, very little alcohol, if any at all. Alcohol makes the fatigue much worse for me.
However, I think it depends on what you were diagnosed with and what meds you‘ve been given. I went for half a year without any, really bad doctors who simply didn‘t care that my hands and feet were swollen and painful. Then the rest of the body came, I had inflammations all over, neck, jaw, all the way to the toes. I was then put into a clinic for a month and put on an excellent course of medicines, and from that point forward, started to feel better.
Physio at the very beginning is also important, so you learn which moves work against painful joints. If the NHS doesn‘t pay, spend the money privately, it is one of the best investments you can do.
I hope some of this helps? Nothing is as bad as the hours you feel like crawling under a rock, but remember, it is not always this bad, there is light at the end of the tunnel.

So you find CBD oil very helpful. That's good to know. I'm going to try it if all else fails. It sounds like you've been in some dark places and risen above - good for you!

SusiM

Callo wrote:

I get exhausted when I am stressed, slept badly, or the pain starts coming. I have rheumatoid arthritis, or juvenile RA, since I got it when I was 18.
The best way for me to control fatigue and exhaustion is to find something that takes the pain away, firstly. I started vaping cbd oil, 500mg. Three puffs, each held in the lungs for 30 seconds. I feel the effects immediately, the pain disappears (at the moment, the soles of my feet are the worst offenders) for about 24 hours. When I am exhausted I need more. I react badly to painkillers, as I also have really bad IBS, they tend to make the symptoms worse.
Once I am relatively pain free, I then try to mildly exercise, if I am super fatigued. If fatigue isn’t too bad, I do exercises that get my heart rate going. I went from being told not to do anything other than walking and swimming to body weight exercises and a weekly 10k running. That’s quite an improvement! I think doctors are slowly realising that exercise is very important to fight against arthritis. Exercise and healthy eating have been my saviours. Also, very little alcohol, if any at all. Alcohol makes the fatigue much worse for me.
However, I think it depends on what you were diagnosed with and what meds you‘ve been given. I went for half a year without any, really bad doctors who simply didn‘t care that my hands and feet were swollen and painful. Then the rest of the body came, I had inflammations all over, neck, jaw, all the way to the toes. I was then put into a clinic for a month and put on an excellent course of medicines, and from that point forward, started to feel better.
Physio at the very beginning is also important, so you learn which moves work against painful joints. If the NHS doesn‘t pay, spend the money privately, it is one of the best investments you can do.
I hope some of this helps? Nothing is as bad as the hours you feel like crawling under a rock, but remember, it is not always this bad, there is light at the end of the tunnel.

I forgot to ask what meds are you on?

stickywicket

SusiM wrote:

I'm on a Facebook forum for undiagnosed illnesses as l have all these other symptoms going on and l hear the worst stories about people's doctor's. It's hard to find quality GPs these days.

I disagree, Susie. Either I've been exceptionally lucky or that just isn't so. And, in 73 years, most of them with RA, I've known a fair few docs and specialists and had some lovely ones.

I may have said this before (I say it a lot ) but, if you're looking for information on Facebook or even on forums such as these, you are looking at those who are dissatisfied. Happy people don't usually bother posting. And what they write is only one side of the story. With Dr Google everyone thinks they are an expert. We're not. For accurate information we have to go to reliable sites. I don't even regard my own posts here as factual. They are my genuine opinions based on years of RA but that's all they are - opinions.

dreamdaisy

I've always had good doctors even if there has been a personality clash: I am there for their knowledge, not to invite them to dinner. Over my years I have witnessed atrocious behaviour by patients towards medical staff but never in reverse.

Dr Google is a hypochondriac's dream come true; so much disease, so little time to experience every symptom going. There are people who fully enjoy ill-health because it brings them attention, sympathy, they want to be fussed over. Over my unhealthy years I have come to realise that the truly ill knuckle down to the challenges, just get on with it. They work with, not against, the medics. DD

daffy2

Susi, while I sympathise with the problem of having several undiagnosed health issues I think it's worth pointing out that a GP is a General Practitioner which can make it a rather hit and miss business sorting out multiple ailments. That was always the case, but more recently time/workload pressures coupled with the inconsistencies imposed by the funding arrangements(CCGs, and hospital/GP surgeries playing off budgets against each other) means that even if the GP has an idea of what the problem might be s/he won't necessarily be able to progress matters satisfactorily.
And for some of us just getting to see a GP is an achievement in itself(I can't currently make an appointment at my surgery with any of the doctors as they were so booked up they had to close the book) never mind trying to sort out multiple issues!

SusiM

stickywicket wrote:

SusiM wrote:

I'm on a Facebook forum for undiagnosed illnesses as l have all these other symptoms going on and l hear the worst stories about people's doctor's. It's hard to find quality GPs these days.

I disagree, Susie. Either I've been exceptionally lucky or that just isn't so. And, in 73 years, most of them with RA, I've known a fair few docs and specialists and had some lovely ones.

I may have said this before (I say it a lot ) but, if you're looking for information on Facebook or even on forums such as these, you are looking at those who are dissatisfied. Happy people don't usually bother posting. And what they write is only one side of the story. With Dr Google everyone thinks they are an expert. We're not. For accurate information we have to go to reliable sites. I don't even regard my own posts here as factual. They are my genuine opinions based on years of RA but that's all they are - opinions.

Hi SW
I've also been blessed with good doctor's but l travel a good clinic. When lve just got something minor and l go see anyone over seen what some people are saying about their docs. It's like a cattle station and they just want you in and out. With undiagnosed illnesses GPs can get frustrated and many people on FB are saying they are being directed to psychiatry because the GP can't solve their problem and think they're making it up. But it's true that l am only hearing the negative so lm bound to hear all the horror stories.

SusiM

daffy2 wrote:

Susi, while I sympathise with the problem of having several undiagnosed health issues I think it's worth pointing out that a GP is a General Practitioner which can make it a rather hit and miss business sorting out multiple ailments. That was always the case, but more recently time/workload pressures coupled with the inconsistencies imposed by the funding arrangements(CCGs, and hospital/GP surgeries playing off budgets against each other) means that even if the GP has an idea of what the problem might be s/he won't necessarily be able to progress matters satisfactorily.
And for some of us just getting to see a GP is an achievement in itself(I can't currently make an appointment at my surgery with any of the doctors as they were so booked up they had to close the book) never mind trying to sort out multiple issues!

Yes Daffy l think that's where lve hit a brick wall. After running all basic testing and finding nothing there is not enough funding for my doctor to progress any further with it. I do feel frustrated about it but there's nobody to be mad at.

SusiM

SW sorry about my questionable English. I'm using a different computer and it changes the words that l type...honestly lm not even making it up :roll:
What l was trying to say is lve experienced the cattle-station clinics. They call them super-clinics here in Australia and they can generally see you very quickly but they're all about quantity and not much quality. The last time l went there they sent me away with the shingles! My mum later located the rash. If l didn't drive ld have to go there permanently and l wouldn't trust them with the big things. They are GPs who care more about the money than the patients. These clinics are set up all over lower socio-economic areas. I have to travel to a more affluent area for a quality clinic and a GP l can rely on.

stickywicket

I'm sorry it's so difficult for you to get quality care. At least you have a rheumatologist (presumably not part of one of these clinics) who will, hopefully, keep you on track with the right treatment.

No apology needed re the computer taking control of what you type. I have the same problem at times.

As for undiagnosed illnesses – I'm sure some people on the Facebook group will have undiagnosed illnesses but others will be making themselves ill with over-the-counter meds and supplements, others will just be hypochondriacs, others maybe genuinely in need of psychiatric help and yet others will (for some odd reason) just enjoy joining in with a grumble, either real or invented. It will make it very, very hard for the genuinely ill to sort out who to believe. Hence my belief in sites with tried and tested information not just anecdotal stuff - like mine

dreamdaisy

I wonder if you could feel better if you took the proper meds? As I said to someone else on here you don't go out into a hurricane holding an umbrella and expect to stay dry.

As for the FB group I suspect the depth of medical knowledge on there wouldn't be enough to drown a flea but it provides a platform for the needy and weedy. I hadn't pegged you as either, rather bewildered, confused and frightened. DD

SusiM

DD and SW lm seeing the rheumatologist this Thursday. I'm hoping they put me on something stronger and lm hoping that all the symptoms lm experiencing are due to the arthritis even though they are oddball symptoms it may just be the way my body reacts when the disease isn't under control. Much better that then l have a second condition. Please God no, not right now. One at a time would be nice.
SW lve taken on board your advice about website information. I'm tending to look anywhere and everywhere cos l just want answers.
Thankyou both for always having time for me and very valuable advice.

dreamdaisy

I can tell you that for me knowing why makes absolutely no bl**dy difference to the situation. We both have what we have because we were both given the gift of life. Life is the answer, life is responsible.

The rheumatologist may well offer you something stronger but the key here is will you take it or will you again 'research' extensively amongst the dramatically hysterical and yet again take flight for fear of what probably won't happen? You're in a new world and the bravery has to come from you. It isn't easy. DD

stickywicket

Well, I don't know about you but I'm relieved you'll be seeing the rheumatologist on Thursday Let's hope you'll get some answers followed up with some relief from your symptoms.

I do understand 'desperate googling'. I think we've all been there at some point. Our elder son has coeliac disease. Well, I tell everyone that, because it's simpler than saying he almost certainly has it. It didn't show on the test, some years ago, but he kept getting a horrific, itchy, pustuley rash which obeyed all the rules for dermatitis herpetiformis (a rash connected to coeliac) except that he only got it after a sudden drop in temperature (external temperature not his own). This, plus the negative coeliac test, sent us on a long, medical goose chase trawling through unusual diseases, especially of the autoimmune variety (My genetics are almost certainly to blame :roll: ). In the end he simply opted to give up gluten completely and he's never had the rash since.

Of course, it's much easier to give up a foodstuff than to take medication that comes with a long list of potential side-effects but I think that, possibly, the situations are broadly the same. You both have a disease which doesn't quite conform to 'the rules'. However, in your case at least, something might have changed to make a diagnosis seem more sure and relevant. The blood markers might be different. I hope you can feel more at ease with the outcome of the appointment.

Just a heads up. Remember to make a list of any questions you might want to ask. Don't go in with a sheaf of A4 and don't be so anxious to put all the questions that you forget to listen to the answer 8) If you can take a second pair of ears with you (preferably attached to someone ) that's even better.

Good luck and please let us know how you get on.

dreamdaisy

By my reckoning your Thursday has reached its evening. I hope the appointment went well and some decisions have been made. Thinking of you, DD

SusiM

You gals are the bomb! I think that's what young kiddies say these days when something is great
One of my concerns with starting something like meth is that lm already feeling so under the weather with nausea and other things l didn't want to add on side effects. Prednisolone has given me an answer in that it will no doubt make me feel better and I'll feel more able to cope with anything unwanted. (Just initially)