Is this some sort of flare up?

I just don't know. I slept all morning and then tried to do some work this afternoon but couldn't keep my eyes open so gave up and tried to do exercises on Nintendo wii as its just too disgusting to be outside with rain and gale force winds today. Then had a hot bath as I'm so chilled despite the fire being lit all day so its actually cosy. Then just climbed back to bed and slept again. Now trying to stay awake because scared that if I sleep any more I'll have the usual trouble at night.

I'm not exactly in pain but all my body aches - especially shoulders and wrists. My hands feel as if they've been fitted together wrongly - cant clench them and if I bend my wrists my knuckles under index fingers throb. The deep heat is coursing about in my groin, hips, feet and arms while outside I'm freezing. I don't feel ill, no cold or throat stuff or headache though - just plenty of ache and very very tired? Any ideas. Thinking seasonal affective disorder, Vit d deficiency or possibly RA flaring but its a bit too general isn't it?

19 Replies

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  • Tilda, I hesitate to suggest this but have you thought about fibromyalgia? The all over aching is spot on as is the tiredness. You do not strike me as the sort of person who goes to bed for no reason, again a symptom of fibro, but on the other hand my background discomfort (which I did not realise was there) has gone on 20 mg pred. I know pred makes you bipolar but is it worth asking for a steroid jab (better tolerated) rather than having to put up with this. If it lessens your discomfort it is both a bonus as you would know it is inflammation which is giving you pain and might put things into perspective as opposed to fibro. I have been told I have fibromyalgia trigger points but I now say it is ra as on these lovely steroids it has gone which to my untrained mind means ra inflammation as shown on ultrasound rather than fibromyalgia. Just a thought and I am aware of your hesitancy about going to your GPs. Opp chowever, it is your body and your life. Also lovely as your gorgeous pup is, they are bloody hard work and I don' t think I could go through that again. So sorry for you as you must feel so isolated. I do not have a rheumy nurse but I can have very quick access to my consultant and I know I am very fortunate. Good luck and sleep well xxx Virge

  • stupid kindle fire (or rubbish fingers!) _ opp chowever should be but however! Xxx

  • Yes I was actually wondering the same thing actually Virge. I don't think I have fibro - could be wrong though. I have had some odd features with my form of RA including pins and needles and deep heat surges in limbs and joints. But I think I would be in more pain if it was fibro from what people on this site have said. The pain I'm in is really not that what I'd call pain but just a low throb and a feeling of great discomfort.

    I'm hoping I can hold out until the 7th when I have next blood test apt to see GP. If it's still going on like this I would consider a steroid jab, although, having had a kenalog one in 2011 while I waited to see the consultant for the first time - I'm afraid it too turned me bipolar and husband found me rummaging for sleeping pills and muttering to myself darkly - which I can't even recall doing now!

    Both times the steroids did the job valiantly in terms of inflammation and as you may remember my ESR has only recently come down to the 30s having been up in 50s and 60s for ages. I think this shows that there has been inflammation that wouldn't tarry with fibro?

    And yes I think the pup has a lot to answer for - or rather my husband has! I was hoping I'd exaggerated it all first time round but I most definitely hadn't! Tilda xx

  • Hi Tilda

    You may have noticed on my blogs and questions about fibro.

    I just didnt think my meds were working but rheumy was unsure because of my readings. He did however give me a steroid injection and i did feel better within 24hrs. Was thinking it must just be ra then my jaw started tonight, no inflammation just feels sore and out of place. I also had to have day off work and slept all morning. I just felt exhausted. Have had tender calves but not since steroid injection.

    Had steroid wednesday and am now keeping daily notes of how i feel until i go back on 3rd jan.

    If it is fibro rheumy said i need ra meds sorting first before looking at fibro.

    Not sure if any of this sounds same or similar but fibro is something ra sufferers get.

    As if we dont have enough to cope with!

    Take care

    Jo

    Xxxxx

  • Also meant to say ive also experienced those warm feelings which are strange. Im now off leflunomide and awaiting new meds.

  • Thanks Jo. I've taken a sleeping pill and an Amitriptyline tonight to ensure that I sleep a full night and OH is doing Ruby's night wakes poor thing. Thankfully its Saturday and nothing urgent to wake for but I've got another concert to sing in tomorrow and its my home town so I've organised it as a fundraiser for the local care home where husband is on nightshift so will bring some residents down. Then next day our next writer arrives for 2 nights and a big workshop with adults and staff. Mine main worry is if weather continues to be this wild because I can't walk the dog in it and he and Ruby will be stuck in a lot this weekend.

    I have looked up Fibro again and think that it would be more painful because that's the main symptom and this is really just confined to tender joints rather than muscles. I know I'm exceptionally tired but think that's just the puppy and dreadful weather plus work and boys. Middle son arrived home very drunk last night - he did apologise but I really hated it and both dogs woke too.

    It feels a bit like I've bed. Injected with something corrosive rather than the horrible all out pain Fibro sufferers describe but I'll keep an open mind. Jaw sounds horrible Jo. Tilda xx

  • Must admit on reading up on it apart from the tiredness, achey jaw and calves and a heat sensation i didnt think i had it and just put it down to ra.

    Was rheumy who suggested it could be fibro and said steroid would reveal all, if you know what i mean. Wish he hadnt mentioned it as i not only feel back to square one wigh meds ive now got this like a cloud over my head!

    On the upside least with my steroid i can go to xmas works party lol.

    You sound like you are going to be mega busy and i take my hat off to you.

    Slapped wrist for drunken son lol. As for a puppy to take care of, thats does sound tiring!!

    I can definately relate to being injected with something horrid as i really dont feel terribly ill, just strangely different, if you know what i mean.

    Our bodies are like crosswords but with no clues or help with whats what and what solves any of it!!

    Take care and sleep well.

    Jo

    Xxxxxx

  • To me yours corresponds more with RA Jo - especially as you're responding well to steroids? Maybe a a lot of RA and some Fibro on top though. But you have been making distress noises on this site lately with large amounts of pain in many parts and that's where the Fibro might be coming in to things for you? Mine us more discomfort and additional stiffness and ache than actual pain but as Virge says its not like me to get so exhausted that I spend most if a day asleep. I normally sleep badly so just am used to cat napping to top up not full on wham for hours on end. I do think having Ruby entering the fray just now has been too much - which is why husband has taken over last night and this morn - because she was entirely his idea! X

  • Tilda, you have had such a good spell of it lately and by the sounds of things it could still be ra. I have both ra/fibro and i am never pain free i'm sad to say. I find the trouble with having both is that i can't tell which is causing the trouble. I believe you have a friendly dr up there where are go and have a quiet chat with them and see what they say. Your weather hasn't been helping either. I find the weather has a terrible impact on how i feel. Rest when you can tilda and don't worry (i know easier said than done,but the more you worry about it the worse it becomes) and get a word with your dr and also see if you can get that blood test done sooner.

    I don't know if this has been any help to you or not,but i wish you sleep well.

    Love sylvi.xx

  • It could be that your overactive immune system is just very efficiently fighting off a bug of some kind.

    I have had spell of knackeredness (with or without aching), and I call them "flare-downs" because they are just like an RA flare only without the awful pain. I hope things ease for you soon.

    Dotty

  • Hope you are not having a flare but what you describe corresponds to my flare ups. Typically my temperature will be raised by about 1 degree when I'm feverish during a flare (which usually shows as can't get warm no matter how hard I try.) I believe the temperature thing is a classic sign so I'd recommend taking your temp. at different times & making a note. Hopefully your aching & exhaustion will disapear though, sometimes I feel as if I nearly flare & then my body remembers I'm on mtx & calms down.

  • Thanks all - these answers were really helpful. I took an Amitriptyline and a Zopiclone (sleeping pill) and slept like a log. Wrists and knuckles still achy and tight but not having to get up and down for Ruby was the main thing. Hubby had her in the crate next to our room and she's already peed on our bed (huge went through duvet!) and on the floor from sound of all the "in there Ruby in there" that are coming from husband downstairs now!

    I have piano lesson for son, husband needing a rest all afternoon prior to a nightshift, a town hall to help prepare for Xmas concert tonight with mince pies etc. its a fund raiser for the old folks so its important for me as my idea! Then after singing I have to get back home to Ruby and Fred and boys and no doubt pee everywhere!

    Tomorrow our next writer arrives for 2 nights with us and on Monday the boss comes up from Aberdeen and we hold a festive workshop for nurses, OTs, consultants, teachers etc.

    Once its all done maybe the hands and wrists will calm down and the ache will subside. Here's hoping but I'm still thinking that Ruby's nightly toileting and the appalling weather accounts for most of this mild flare up - or flare down!

  • Hope you feel better it sounds like your body needs some rest x

  • Sorry to hear you are feeling bad, but with the dramatic change in the weather here I'm not at all surprised. Its been hitting me too, possibly not quite the same way (mine has a much bigger work stress component), but still hard. I don't think our bodies like first of all the freezing cold, then the strong winds and rain.

    I'm always really hesitant to even think of considering fibro in anyone who already has a rheumatology diagnosis - to me its too easy a brush off, when in reality its far more likely that is either poorly controlled, or flaring rheumatology problems, and when I don't know anyone whose "fibro" doesn't just disappear when their underlying rheumatology problem is also completely controlled (eg when on steroids, which you are right, shouldn't make any impact on fibro).

    I'd go with a mild flare, brought on by weather, stress, activity and (hate to say it), your delightful pup Ruby. It could also just possibly be a forerunner to a mild flu or seasonal winter unwellness, and probably isn't helped by the cold dark days. Look after yourself, try shifting Ruby's nighttime sleeping area to the bathroom (where accidents are easier dealt with), keep your house well-lit (SAD) and as warm as you can, and consider taking something like lemsip or just straight paracetamol for the general achiness.

    Hang in there. I hope the care home concert and entertainment stuff goes well. I know those events are a lot of fun and everyone really enjoys the effort folk like you put into them.

  • Hi Tilda, I get the odd day like that, I just feel exhausted but normally after a good rest I'm back to normal again. Days like that I can also have a mild fever. I feel sometimes when i do too much it's my bodies way of warning me to slow down, I do, don't want the risk of a flare!

    I'm freezing when I feel like that also, feels chilled to the core and the only ting that helps when i'm that cold is a hot bath.

    You think you could do with some looking after? and a rest as Alison suggests? haha but I don't imagine you ever sit still for very long!

    xxx

  • No I'm not great at sleeping or even resting you are right - but my OH took great care of me yesterday and last night it has to be said. He's pretty brilliant even if it is slightly because he's a control freak and likes to rule the roost! This is his week of three nightshifts and our big festive workshop on Monday night so I'm trying to take care of him too. Nightshifts wear people down really badly so lots of daytime rests and good food required.

    I have just cooked kedgeree and now have to de-fish myself and get down the hill to help set chairs out and get refreshments ready for all who attend tonight's concert. The most ironic thing is that the music stands we trustees organised for those, xuch as me, who struggle with holding heavy music scores etc, are actually really cumbersome to lug about! Ah well- thank heavens I slept loads yesterday because we this tired chilly ache thing I don't think I'd be up to performing tonight otherwise. I think it's just as you say Williby - the body's way of reminding us that we aren't fully "cured"! Tilda xx

  • Kedgeree is not a good idea when you are going out afterwards! Good luck with the de-fishing!

  • Tilda

    Im totally worn out just thinking of what you have to do/have done!

    Takes me all my time to do 27hrs a week at work and my tree still isnt up! Xmas shopping would never be done if it wasnt for my hubby who, bless him, is working 12 hr shifts 7 day a week yet he still manages to do most of it online.

    Arnt our hubbies/other halves a total godsend.

    Xxxxxx

    Jo

  • Yes they are and I'm also very mindful of those who don't have a special other to look out for them. Mine came to the concert and we raised £110 for the resident's social fund at his work place and he even said he enjoyed our singing - which he doesn't always! I know how lucky I am - especially as Ruby slept until 7am. One of hubby's colleagues suggested a hot water bottle wrapped up in one of her rugs for her to snuggle up to and it worked a treat!

    Aches and pains have receded again and today our second writer comes to stay for workshop with hospital staff tomorrow night - boss also coming tomorrow for a lunchtime meeting so pacing it carefully today! TTx

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