No rhyme or reason

Hello everyone, here's hoping your day has been one of the better ones! I just wanted to share my bemusement at the fact that there seems to be no rhyme nor reason to the pattern of pain I experience, and wondered how this was for others on here.

For example, this weekend I was in quite a bit of pain with wrists and fingers, my hands were stiff and ached constantly, with sharp stabbing pains occasionally.

Then this morning I got up virtually pain free, spent a day in the office at my desk without a problem, and am happily typing here at after 10 at night!

Some weeks I can hardly carry my bag as my shoulders hurt so much, then other times I can lug my laptop about without a twinge.

Try as I might I can't pinpoint what makes a difference. Sure, I know that if I overstretch myself I will pay at some point, but other times the aches and pains seem to have a will of their own.

Is this your experience, or is there a pattern I haven't spotted do you think?

Have a restful night, Kathy.

17 Replies

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  • I'm the same, I can have a badly swollen right knee then wake up the next day and the knee is gone but my hands will be swollen and painful etc, etc. never the same body part two days running!

  • Yes it seems to have a life if its own like an unruly child.You think you are forever free of pain in one part of your body then there it is again.My sister will say"I thought you said it was in your right foot " YES IT WAS yesterday but today its my left .drives you crackers thou its no fun is it

  • Know exactly what you mean. Last night my ankles had completely disappeared, this morning they're looking good. Knees elbows hands jaw etc.. can do the same thing. I've tried to link it to food drink to much exercise not enough but as you say there is no rhyme or reason for it apart from the obvious, stress & over doing things. Be interested to hear what others have to say.

  • Exactly. How can we explain to our family and friends when it does not make sense to ourselves? It just does not make sense how it can jump around and pain levels fluctuate although when under control this does not happen as much. I also cannot link food and movement most of the time - yes sometimes you do overdo it and pay the price. Farm

  • The unpredictability is one of the most difficult things to explain to people. "Yes, I know I managed to open this yesterday but I can't today." And it catches me by surprise all the time. I start to do something and realise that I can't do it - frustration rules OK. But on the bright side - it may be better tomorrow!

  • The randomness also makes it very hard to adapt and make adjustments in my daily life. You need a trick or technique for every possible task and every possible body part. Necessity is the mother/father/nephew/auntie/third-cousin-once-removed of invention it seems.

  • Yep, one of the more inexplicable aspects of our condition. People who have not experienced it will never understand. Does that make us SPECIAL?

  • Yes it's very frustrating, especially when folk don't "get it" about the fatigue part. For some reason (and believe me, I've looked for reasons!!) I only have RA in my feet and toes, and I've hardly been free of pain ever since it started two and a half years ago. But when I get a relatively good day, I do all the agonising over what on earth has made the difference - food/exercise/stress? , and the same when it's really bad! "What did I DO??!!!" Nothin probably..... - have now been on Humira injections 3 months, with no obvious improvement, had ultrasound scan of feet a couple of weeks ago, then a letter from Rheumy Consultant saying "it is difficult to tell from the scan whether Humira is helping or not". Aarrggghhh!! It just seems neverending.

    Hope your good day continues!

  • I really relate to these answers. Today I can hardly use my right hand, and my left knee keeps collapsing. I see a correlation between sleeping well and long, hence being immobile and these pains. Once I move around a bit things start to improve. One consolation for bad nights!

  • Yes, the pain seems to move around or leave with no rhyme or reason.

  • I keep wondering whether stress or lack of sleep or exercise has any impact. I find it altogether very curious. I know that when I first got my symptoms under control, I started doing more and more and really forgot that I even had RA. I think I overdid it, started pushing too hard with my workouts, staying up too late, trying to do as much as possible, and working extra hard to "prove my worth" in a new job, and then I crashed.

    Right now my main symptoms, which could be drug-related as much as RA-related, are nodules under my finger pads near the joint closest to the fingertips (yes, I know I am lucky that this is all that troubles me lately!). I keep wondering if they get worse when I have lots of sugar (I feel like it's easy to vilify sugar, and usually warranted), but I admit, I haven't given myself a long enough break from sugar consumption to be able to tell.

    I think it's useful to keep a diary to be mindful of possible triggers. You might have enjoyed that hour spent in the garden so much that you don't realize the next day that it is to blame for a weak grip. Or sitting in the same position, rigid and alert while watching a thriller may have been quite enjoyable and "seemed" relaxing but then the next day you can hardly walk.

    Anyhow, I'm not saying it's not completely random, and certainly a lot of people have already agreed that it is random, but I still feel curious to know if there are triggers we don't even think could be triggers that are doing us in.

  • Hi all, I was exactly the same as you last year, by this year the pain is more constant, in my case an undertreated thyroid condition triggered it all! Have you all had your thyroids checked? Also diet makes a huge difference, cutting sugar and refined foods out of your diet completely lessens the inflammation! Hope this helps Angela

  • I am the same in one place then some were different I can't plan my day till the morning when I am have in bad days I have had to stay in

  • Thank you all for such interesting replies. It is good to know I am not alone, less good to know maybe I should cut back on the sweeties...😉

    I remember before I was diagnosed saying to my other half on a trip out "I'm hurting in a different place." And he said, "Yes, you were hurting in Eastbourne yesterday and now you're hurting in London!" Still makes me laugh!

    On a more serious note I have noticed that keeping still for long periods of time is NOT good for me, so that is one of the triggers I try to avoid. Thanks again, all of you, and have a good evening.

  • Here, here! to all the above.

    Starting to feel jaded today and more than a bit weak and feeble. Concentration is also missing...

    What's that version of Rha that moves around - palindromic? Might be worth looking into that 'model'...

    MJ

  • It could be Palindromic pain as this was the term that was used by my second consultant. I thought I was going crazy with the intense uncontrollable pain which 'jumped' from joint to joints all around my body. My first consultant and my family and friends had trouble understanding what was going on. Some days I was unable to move my right shoulder with the pain and then my left knee the next day and then my left hand or fingers etc etc. I had trouble understanding what was happening to me but it it didn't make it less real. It was always a nasty surprise where it would come next!

    My second consultant knew what was happening straight away and explained these extra symptoms as 'very painful' form of roaming rheumatoid disease. He said that they didn't know why some people were affected and not others and it is random and can jump from one side of the body to the other.

    It was uncontrollable with standard dmards or steroids. It was then he put me forward for biologics. Enbrel has controlled the palindromic pain well so far although I take nothing for granted and take one day at a time. I have been taking enbrel for about 18 months and tapered off steroids 11 months ago and dmards where stopped almost straight away. The palindromic part of the problem eased quite quickly after starting Enbrel.

    Hope you find an answer soon.

  • This is exactly the proble with my RA. It moves all over so when people ask me where I have the arthritis I say it moves between my knees, hips, ankles, shoulders and clavicles! No rhyme or reason. Sounds common. I feel very fortunate my hands and feet are not involved.

    Cheers Doreen

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