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 Post subject: Hello again... and questions about fatigue
 Post Posted: 18 Apr 2017 14:53 
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Hello everyone :)

I'm not (strictly) 100% new but I haven't posted on here in a very long time and I never posted regularly when I first arrived! I was diagnosed with seronegative arthritis in 2009 when I was 21 and studying for my finals at uni (I'm now about to turn 30). It affected both of my knees with pain and swelling, but also shoulders, toes, fingers, and I had real trouble getting around, and doing anything really. Since then I have been incredibly lucky - I was put on Methotrexate which really helped (apart from all the horrid side effects which I just accepted as I figured they were much better than the pain!) and I had a long period of mostly being in remission until 2013, when I had a major flare up in my knees again that lasted several months. I've also got some other auto-immune things going on (Crohn's, and occasional eye inflammations) and so at that point I was put on Humira, and now take both meds which so far has kept the pain and swelling under control. I've been in remission again for a long time. Although I can't really walk for long periods of time without getting very stiff and tired, and over the last few years it's started to affect my hips (although I'm not sure if that's because they're taking up some slack for my knees?), I mostly get by without too much trouble from the pain.

I know I am one of the lucky ones because my disease is under control and has been for a long time and I can largely go about my business and forget about it. But aside from that, the fatigue is definitely one of the worst things and I don't know if it's a symptom of the disease or a side effect of the meds. I get sick all the time, and if I ever have even the mildest head cold, it's always accompanied by several days of extreme fatigue. If I have a bad flu sometimes it can be up to two weeks of feeling completely drained of energy, like somebody has cut off my power supply, and the simplest things (having a shower, getting myself a glass of water) leave me completely exhausted, dizzy and faint. It does go away, very gradually, after a few days, so again I am luckier than people who have to deal with fatigue all the time, but I just wondered if anyone else has the same kind of patterns to their fatigue? I've always assumed it hits me after illness because of the weakened immune system from the MTX. It can be very demotivating and depressing and I find it hard to explain to other people how debilitating it is when it often looks like there's nothing else wrong, or like I should be getting better. Anyway, it'd be nice to hear from other people in the same boat. Thanks folks :)

Lottie x


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 Post subject: Re: Hello again... and questions about fatigue
 Post Posted: 19 Apr 2017 14:33 
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Joined: 21 Oct 2010 16:03
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Hello Lottie and welcome back. And congratulations on your degree :D I think you should also be congratulated on the way you cope with arthritis - doing what has to be done in terms of medication, accepting that it's a trade-off between disease and side-effects and generally getting on with things.

Fatigue is a difficult matter. Arthritis Care have a page on it whici you might find helpful https://www.arthritiscare.org.uk/living ... is/fatigue . It is, of course, part and parcel of the disease but, if constant, and at fairly high levels, I've always felt something must be not quite as good as it could be. How are your regular blood tests? Anything untoward either in CRP levels or iron?

I've never had constant fatigue with methotrexate (I don't do humira) just sometimes the odd day either the day after I take it or the day after that. But I had RA for many years before being offered methotrexate and I always found that anything that raised my temperature, even slightly, set off my joints. I do my best to avoid colds etc. I have antibac gel in my handbag and bathroom. If we're going on holiday I ensure Mr SW uses it too just so's I don't catch anything from him. Most of my friends now know not to come round if they have any bugs. As for flu - being immuno-suppressed, you are entitled to a free jab every year. I get mine in early to beat the flu bug. We are now old enough to get them on age grounds alone but before that Mr SW was always offered one too for my protection.

The dizziness and faintness don't sound good. Sometimes we can get just too used to putting up with things. I'd suggest you ring your rheumatology helpline to see what they suggest but also, maybe, see your GP. We are all too prone to things like iron deficiency or Vit D deficiency which can be identified with simple blood tests and remedied with iron pills or Vit D suplements.

Please let us know how you get on.

_________________
'If you don’t find quantum mechanics baffling then you haven’t understood it.' (Niels Bohr)


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 Post subject: Re: Hello again... and questions about fatigue
 Post Posted: 22 Apr 2017 15:15 
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Joined: 29 Mar 2017 20:48
Posts: 28
Quote:
Hello everyone :)

I'm not (strictly) 100% new but I haven't posted on here in a very long time and I never posted regularly when I first arrived! I was diagnosed with seronegative arthritis in 2009 when I was 21 and studying for my finals at uni (I'm now about to turn 30). It affected both of my knees with pain and swelling, but also shoulders, toes, fingers, and I had real trouble getting around, and doing anything really. Since then I have been incredibly lucky - I was put on Methotrexate which really helped (apart from all the horrid side effects which I just accepted as I figured they were much better than the pain!) and I had a long period of mostly being in remission until 2013, when I had a major flare up in my knees again that lasted several months. I've also got some other auto-immune things going on (Crohn's, and occasional eye inflammations) and so at that point I was put on Humira, and now take both meds which so far has kept the pain and swelling under control. I've been in remission again for a long time. Although I can't really walk for long periods of time without getting very stiff and tired, and over the last few years it's started to affect my hips (although I'm not sure if that's because they're taking up some slack for my knees?), I mostly get by without too much trouble from the pain.

I know I am one of the lucky ones because my disease is under control and has been for a long time and I can largely go about my business and forget about it. But aside from that, the fatigue is definitely one of the worst things and I don't know if it's a symptom of the disease or a side effect of the meds. I get sick all the time, and if I ever have even the mildest head cold, it's always accompanied by several days of extreme fatigue. If I have a bad flu sometimes it can be up to two weeks of feeling completely drained of energy, like somebody has cut off my power supply, and the simplest things (having a shower, getting myself a glass of water) leave me completely exhausted, dizzy and faint. It does go away, very gradually, after a few days, so again I am luckier than people who have to deal with fatigue all the time, but I just wondered if anyone else has the same kind of patterns to their fatigue? I've always assumed it hits me after illness because of the weakened immune system from the MTX. It can be very demotivating and depressing and I find it hard to explain to other people how debilitating it is when it often looks like there's nothing else wrong, or like I should be getting better. Anyway, it'd be nice to hear from other people in the same boat. Thanks folks :)

Lottie x
I have the same condition as you... Crohns with arthritis. Our arthritis has a name...Enteropathic....I was only made away of this name a few years ago.
I am 15 years older, arthritis started at 18 and then the Crohns came, I am lucky as Crohns has been in remission since 1995.
The arthritis is the real problem. Because I am older the anti TNf stuff wasn't available early on so I have joint damage and a hip replacement.
I get very tired but don't get the extreme fatigue you have...you maybe have another deficiency.
I wasn't much help but at least you know the name now :-)


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 Post subject: Re: Hello again... and questions about fatigue
 Post Posted: 23 Apr 2017 16:30 
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Joined: 25 Nov 2009 17:05
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Hello Lottie and dalek and welcome to both of you
Lottie I totally agree with Dalek, we sometimes assume that everything is down to arthritis..I would goi and see your GP or rheumy and explain everything, and hopefully have bloods taken to rule our other things..let us know how you get on..

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Barbara


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 Post subject: Re: Hello again... and questions about fatigue
 Post Posted: 23 Apr 2017 19:10 
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Hi Lottie,

Welcome back, I'm very glad you have had long periods of remission, and thanks for coming back here and reporting about it, I feel some newly diagnosed members might not fully realise how many people have very good control once the meds are sorted out, though we know that can take a while.

I'm pretty sure I remember your earlier posts and how proud we were, taking all due credit of course :wink: :P :wink:

I do feel you should be talking over your extreme fatigue with your rheumy team, they have all the info to help you with this. Don't ignore it, like pain it needs attention - especially as it is affecting your daily life so often.

Maybe at the same time ask them about the name for your condition, to check it is the same as dalek's - with the wide range of conditions there are checking for sure is a good idea.

Do let us know how you get on, lots of us with similar fatigue will be interested.

Take care
Yvonne x


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 Post subject: Re: Hello again... and questions about fatigue
 Post Posted: 16 Apr 2018 09:27 
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Joined: 08 Jul 2009 16:15
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Hello everyone, thank you all for your lovely supportive replies and apologies for going off the radar for an *entire year*... I don't know how that happened - obviously don't have notification settings on (oops - changing that now)!

Dalek - really interesting to know about enteropathic arthritis - like you, for me the arthritis is the real problem as well; I think of the Crohns as my 'secondary' disease as it's never been as bad or debilitating. Just annoying/embarrassing!

An update on the fatigue problem: at the moment I am going through a pretty severe episode, the worst/longest that I've had. My arthritis and Crohn's are still well under control, with no pain or other symptoms, but I haven't been completely healthy or fatigue-free since November last year. I've had several episodes of cold/flu symptoms since then (stickywicket - thanks for the heads up about the flu jab, I also get it every year and sometimes I get two!!) - but the illness is always followed by several days/up to a week or week and a half of *severe* fatigue - sometimes I'm unable to get up and dressed. In March I had tests done for tonsillitis as I had a throat infection, but the tests came back negative and since then I've been signed off work for five weeks with no symptoms other than severe fatigue. I've come off the MTX and Humira (on rheumy's advice), because I suspected my low immune system was making it difficult for me to recover, so I'm not taking anything for the arthritis currently. It isn't flaring (yet) so I don't think the fatigue is related to the arthritis. It also feels/sounds different from arthritis fatigue, and from what I remember the fatigue being like when I was flaring. It's not a level that I feel able to live with normally - it's not a case of conserving my 'spoons' as when it's bad, I wake up with no energy at all, no concentration, no ability to anything but just lie there. Sometimes I make it from bed to couch, or switch from TV to reading a book. It takes a huge effort to get showered and dressed, it makes me very tired/foggy/dizzy to stand up or walk around for long periods, and going outside is difficult. When I'm able, I make myself a) get up and showered and dressed, b) eat regular meals and c) leave the house every day even just for a short trip to the shop, but this leaves me feeling exhausted and dizzy and unable to do anything else for the rest of the day.

From talking to others with chronic conditions, and responses on this forum, and from reading up on it, it sounds as though these levels of fatigue are possibly not within usual levels, which makes me think perhaps it might be something else? It's definitely got worse over the last 3-4 years - occurs more often and takes longer to lift. It always comes on after some sort of infection - even a simple cold will bring on several days of fatigue, and at the moment I don't know when this episode will end, or even if it will! I have another GP appointment tomorrow and am going to bring up CFS/ME with them. It seems like a possibility as the fatigue is really the main symptom and it's really debilitating.

Regular blood tests on MTX have always been fine, and iron levels were recently normal. I had various blood tests done last week, haven't had any results yet, but I think I would have been contacted if there was some major deficiency causing the fatigue (although I will discuss with GP tomorrow!) I've been taking all sorts of supplements - magnesium, B12, iron, just in case. I've also been on antibiotics for 3 of the last 4 weeks, with no effect. I'd got used to dealing with a couple of weeks of bad fatigue after every cold/flu (usually 3-4 times a year), because I thought it must be my suppressed immune system from the MTX and Humira, but this time it just doesn't seem to be getting better.

Anyway... I will definitely keep you posted this time. Thanks again everyone for the support, and hope you are all doing well.

Lottie x


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 Post subject: Re: Hello again... and questions about fatigue
 Post Posted: 16 Apr 2018 17:05 
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I was going to suggest CFS/ME but see you're already thinking along those lines. Good luck with the appointment, I hope some light can be shed on this situation. DD


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 Post subject: Re: Hello again... and questions about fatigue
 Post Posted: 17 Apr 2018 10:06 
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Hello again and welcome back :)

Yes, I wonder if the ME thing might be a clue. I do hope some answers can be found. Much of what you write about doesn't quite seem to fit with arthritis or, at least, arthritis alone, does it? I hope answers can be found.

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'If you don’t find quantum mechanics baffling then you haven’t understood it.' (Niels Bohr)


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 Post subject: Re: Hello again... and questions about fatigue
 Post Posted: 19 Apr 2018 17:56 
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Hello, how did you get on at the GP's? DD


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 Post subject: Re: Hello again... and questions about fatigue
 Post Posted: 21 Apr 2018 21:46 
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Joined: 08 Jul 2009 16:15
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Hello, I’ve now seen GP again as well as a mental health nurse, and a call with rheumy nurse. Nothing conclusive so far... nobody seems to know what’s causing it or what to do about it, or they assume it will just get better with time. I think it is improving, but very, very slowly, and I just have to take each day as it comes. And I haven’t got unlimited time, I would need to go back to work next month or my pay will start getting drastically reduced and then I’ll have to move out of my flat and back in with my Mum and Dad, which is hundreds of miles from my job... although I know I’m really lucky to have that option. The mental health nurse says I need to push myself with exercise, but some days the energy just isn’t there. And on good days I don’t want to push it in case I crash again. GP has referred me to Neurology who will investigate ME/CFS, and she also signed me up for CBT, though both of these may take a while to come through. She also wanted to put me on antidepressants but I managed to avoid them for now... I’ve had a bout of depression in the past and was on SSRIs for a while, and this is totally different. I’m not averse to trying anything but I’m not sure that’s the right route. I found something online called post viral fatigue syndrome, which seems to fit with my pattern, and which seemingly can get better sooner than full-blown CFS (unless it develops) so I’m hopeful about a recovery, but just a bit concerned if it is brought on by illness, as that’s not easy to avoid on the MTX/Humira cocktail! I haven’t really found anything online about people with a combination of CFS and arthritis... they must exist though. Sorry I’ve written a novel again!!


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 Post subject: Re: Hello again... and questions about fatigue
 Post Posted: 22 Apr 2018 17:54 
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Many years ago, after 2 years of ill health including debilitating fatigue I was grudgingly given a a diagnosis of post viral fatigue syndrome. I had always suspected a viral connection as I had had a bad time with a winter flu virus which flattened me( not helped by a big bout of not the best dental work, lots of mercury, yum!) and which never seemed to fully clear, just slid into this awful twilight existence. Things did gradually improve over the following couple of years but I noticed for quite a while that any cold I caught seemed to set it off again for a bit - but again that eventually went away, and fortunately despite live-in germ agents(aka school age children) I didn't get many colds and avoided flu. It was at the time that ME was referred to as 'yuppie flu' and wasn't taken seriously and so although I did wonder I never raised it with the GP.Whether it was coincidence or part of the viral reaction I don't know but I also went into very early menopause at that time which didn't help, not least because it wasn't picked up by my GP -so much for being the practice obs and gynae bod, with the initials to say so!
As you say the situation is complicated by the arthritis and its meds, but in the grand scheme of things I suspect PVFS is 'preferable' to ME.....


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 Post subject: Re: Hello again... and questions about fatigue
 Post Posted: 30 Apr 2018 11:39 
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Thanks for sharing Daffy. I think most doctors would tell me it’s too soon for me to worry about PVFS or ME (in fact they have already!) I was worried it could be something like this, as there was a long period of what seemed like no improvement, but then it finally started to get a bit better and a bit of energy started trickling back, hurrah! BUT now I seem to have caught another virus and was laid up in bed again all weekend with a sore throat, headache, temperature etc... fun. I’m starting to wonder if maybe the cocktail of drugs has lain my immune system so low that it’s just taking weeks and weeks to fight anything off - and apparently it was a particularly bad flu season this year. If that’s the case I really would like to review everything with my doctors as this level of general health is pretty debilitating :( x


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 Post subject: Re: Hello again... and questions about fatigue
 Post Posted: 30 Apr 2018 11:59 
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Sorry you've had a rough weekend.

Last winter was, indeed, a bad one for all sorts of things. I've heard it said that the flu jab wasn't too effective. Wrong sort of flu :roll: or else it mutated before rocking up here. There were some really bad chest infections too. People with very sound lungs were stuck with them for weeks.

I just do my best to avoid infections and everyone with them. Impossible, I know, but I use antibac gel especially when I've been round a supermarket or at a GP surgery / hospital. I keep well away from anyone who's sneezing or coughing and make sure all my friends and family keep their distance when it's them. I eat lots of fruit and veg. Even so, I was one who succumbed to 4 weeks of chest infection last winter. We can only do our best.

I hope the throat's on the mend.

_________________
'If you don’t find quantum mechanics baffling then you haven’t understood it.' (Niels Bohr)


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 Post subject: Re: Hello again... and questions about fatigue
 Post Posted: 01 May 2018 11:40 
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If you are taking immuno-suppressant meds then yes, you are more vulnerable to contracting infections but the risks are easily reduced by increased and improved hand hygiene (for others as well as you), judicious use of anti-bac wipes (which you bin, not flush), always using the gels at the docs etc. (report if they are empty) and checking how healthy friends and family are before you see them. It can be a pain establishing these habits but the healthier rewards you gain make it worthwhile. DD


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 Post subject: Re: Hello again... and questions about fatigue
 Post Posted: 26 May 2018 11:06 
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Hi all, a brief update, I found out from my doctor who ran a serious of unusual blood tests that what I had that knocked me out for such a long time was a bad case of toxoplasmosis! I’m feeling lots better now, still not back to 100% energy/brain function but back at work part-time and working up to full time. Phew! Not sure what it means for my meds long term, as a low immune system can seemingly reactivate the infection that is dormant in your system... I’m still off everything, no flare yet, and waiting to see rheumatology as soon as they can fit me in. Long may the remission continue... fingers crossed!


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