I previously asked a question at the tail end of a post which I believe was not noticed by most people(except for APs not Fab-thanks for the

comments!)so I will create a new question.I would be interested in people's experiences of fatigue.I was diagnosed with APS in January and was able to continue playing tennis, cycle etc. However after a game of tennis in May I woke the next morning feeling dreadful with considerable fatigue which has worsened-I have been off work since June.I am concerned that I may have ME/chronic fatigue syndrome as my fatigue is often delayed post exertion fatigue.My fatigue improves as the day develops-I am at my best in the evening.I look forward to hearing of people's comments regarding their own fatigue experiences.

21 Replies

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  • Hi Steve. It's definitely your APS that is causing the fatigue. I have just had 6 weeks when I felt really pretty good....even having thoughts that I might be getting better - silly me, I should know better! So I've been doing more and more, because I was able to cope, until 4 days ago. The fatigue hit me like a demolition ball on a chain, and now everything hurts. All my usual osteoarthritis pain is magnified, every muscle is aching and it actually feels like my blood hurts!! I had to get up in the night because of the pain, even though I felt so exhuasted and really wanted to sleep.

    I'm going out today because my husband is on leave, but we are having to take my wheelchair. I am sooooo disappointed.

    Steve - hang in there, recognise that you will have limits now to what you can do, and that this is your 'new normal'. This all sounds so negative, and I usually try to be sunny and positive, but this is a condition with some really tough times for us all.

    I wish you well, take care. Larraine

  • Plaquenil has been used successfully by some to help with the associated fatigue.

  • I was first diagnosed with Chronic Fatigue Syndrome for the very reasons you've outlined. It took two years to get a correct diagnosis, but as soon as I started Warfarin, my symptoms settled quite a bit.

    HOWEVER, I still have to be careful about overdoing it. Someone on here told me that stress and exercise can affect INR. I do not know if overdoing it pushes my INR down and that is what brings back the symptoms, or if having APS simply means that your body can only take so much before it says, "I'm DONE!"

    The key, I have found, is to change your expectations and accept this new normal. Tennis is not out, but multiple games or multiple days or playing to your extreme limits probably is. It is a balance game.

    Hope this helps.

  • Hi there, yes this is very typical the fatigue... have they thought to try you on 'plaquenil' it takes many weeks to get going, but for many it helps with the fatigue! Best wishes, sorry I missed a possible question. Mary F x

  • Hi Steve - Cant remember what i said now without going back and looking it up but I think its about pacing. Im the worst of people when it comes to this because when I feel ok I just do what I feel I want to but really, thats exactly what you should not be doing.

    Im not sure if you have heard of the "spoons" theory from the butyoudontlooksick.com site? Its about using spoons to describe getting through the day and then if you have some over save them for a day when you may have run out. Here is a link:

    butyoudontlooksick.com/arti...

    the other thing is that this is also a good way to describe the fatigue part of your condition to family and friends. I know my family still "expect" too much of me despite me trying to tell them numerous times. It just seems to go in one ear and out the other but Im not sure if some of it is because they want me to be normal or because they are embarrassed to be making excuses all the time. Whatever the reason frankly I dont care, Ive come to terms with it and if they cant thats up to them. However I encourage everyone else to at least recognise what they are doing and know that if they do go over the limit they will suffer the consequences.

    Next week is my birthday and I have a few things planned. Im trying to space things out over the week so that I have recovery time but its not going to stop me enjoying myself. I just have to accept that I may have to pay the price for it the following week if I run out of spoons! :-)

  • Hi,

    This spoon theory is absolutely the best explanation have read in my 20 years of dealing with illness. Am sharing it with friends and can only say thank you for posting it here! Just so right on and a great way of looking at things.

    Happy Birthday for next week....

    Leigha

  • Hi Steve, yes I get a lot of fatigue, I asume it's all down to APS......but then again I find it hard to slow down & chill very often & find it hard to say know if asked out anywhere! wether its to do with photography, a shopping trip or gigs!!! :)

    So yes I probably bring a lot of mine on myself but it's how I chose to live as I like to keep busy...........

    I know I suffer for a few days after doing stuff but when I weigh it up with the alternative ( losing out on doing stuff & sitting looking at the four walls! ) I know what my answer will be..............

    I think it depends on the individual to how you handle it.....I also go to the gym 2-3 times a week.....but that helps me with my joints....I am also on plaquinil.

  • Thanks everyone for the feedback and apologies for the inept posting of the question.I am a new member!

    I have been prescribed plaquenil but am currently on a vitamin/mineral regime for cfs/ME so will finish that first.I am on warfarin with a target INR of 3-4 due to having cerebral APS.

    It may sound perverse but I hope my problems are caused by APS only as the Canadian consensus definition ME prognosis can be grim-people are often bed bound and tube fed as the condition worsens.

    I was interested in knowing whether people's APS fatigue is worse at the beginnn

  • Sorry I pressed the send button inadvertently!

    Continuing, I wonder if your fatigue is worse at the beginning or end of the day or if it is continuous?Mine definitely improves as the day progresses.

    Many thanks

  • Much the same as you Steve. I also think that I should say that even if you did have CFS/ME there is a very large spectrum and degrees of symptoms and therefore just because they say you "may" get this or that does not mean you will. I was dx with it in 2004 and I cant say that mine has got any better or worse. i have flares where it does get worse but then times when it improves. Overall, apart from when I was getting over the acute stage of my Stroke it has not got any worse.

  • I am often worse first thing in the morning, it takes me a while to get going, some days worse than others.........& as you say get a little better as the day gets on, then tire again as it gets late......

  • I have episodes of extreme fatigue.....weakness....usually these symptoms go away in about 3 days and I am back to "normal"....I find that I get a "relapse" when I become over tired....I try not to exert myself to the point where my body feels tired.....ie If I work in the garden...I stop before I begin to feel exhausted.....this strategy is working for me....I have not had a relapse since May 2012.....Once the fatigue/weakness begins it will go for the full cycle....and then I feel well again

  • APS is frequently MISdiagnosed as ME/CFS - as I was for over 15 years. My guess is that you 'just' have APS and don't have ME/CFS. Also, can't see any reason why you shouldn't take vitamins/minerals etc. as well as plaquenil - I do, have done for years and years and ....

  • Taking vitamins and minerals are ok as long as they are approved by a GP and they do not have any affect on INR if you are on warfarin. I say this because although many of the main stream vitamins from good companies are ok there are some that report to do wonderful things but there is no evidence other than you would be wasting a lot of money!! So rule of thumb if you are on any medications check with your Doctor before taking supplementation.

  • Hi Steve

    I am a lifelong cyclist, I used to race upto 100 miles, and now just ride for pleasure, still occasionally doing 100 miles in a day. I am increasingly getting muscle tightness and aches, sometimes for the very start of a ride, and I now find that on occasions I am totally exhausted the day after a ride.

    Best wishes.

    Dave

  • Hi Steve,

    Over 20 years ago I was diagnosed with CFIDS. Before that time was very active physically which including long distance cycling, mountain trekking, scuba diving, etc. I now believe that my diagnosis should have included that of APS, as I had symptoms.

    My doctor told me that I had to be very careful because of post-exercise fatigue and he was correct, my life has changed completely but I do what walking am able and have changed from a very active person to a slower person but my love of nature keeps me outside and enjoying life just as much!

    My fatigue is definitely worse later in the day, am best earlier when rested. If I over do it can set me back for weeks, yet when feeling really good it is hard to find that balance beam. I am not on warfarin or plaquenil, do take many vitamins and minerals.

    All the best,

    Leigha

  • Many thanks to everyone for the very useful feedback.I have a skype session this Thursday with the worldwide expert on Canadian Consensus definition ME as opposed to chronic fatigue syndrome and will report back thereafter if anything of interest results.

  • Oh! That old cherry! Yes there are a few that do like to argue the toss on the difference on that one believing that CFS should not be associated with ME as it is a completely different condition! Whereas in this country NICE have clubbed them together like it or not!

    Be interested to hear what is said.

  • Sincere apologies for the late reply.The call was a little inconclusive although the expert reckoned that I do not have the classic signs of ME/cfs.That points me back to APS in terms of the fatigue but the odd aspect of that is that I was extremely active for months(potentially years if I was diagnosed subsequent to contracting the syndrome-I was told by St Thomas' that mine was due to an infection probably and not for genetic reasons as none of my relatives have APS or have shown any potential warning signs).Then in the space of 6 hours I lost 50% of my capabilities.My next appointment is in a few weeks so I will quiz further at St Thomas'.

  • Yes, well there are documented cases of infection being the trigger, hope it goes ok at St T's for you. Mary F x

  • Only a couple of weeks ago at my appointment with Prof H he asked me about mono and if I had it as a teenager which I did, he said that he hears it a lot that it was the first experience of illness in people.

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