Hi, does anyone else suddenly just get where they feel rubbish and flu like from nowhere? Feel like u have a fever but u don't and entire body hurts and joints feel worse.
Just a couple of hours ago I suddenly just feel awful all my joints started to hurt more and my body just feels flu like and weak.
I get these random leg pains/aches like the cold has got deep into my legs and the only way to relieve it is if my partner rubs my legs for a while or a hot water bottle.
I've had to go to bed I just feel rubbish.
I've not been great with my lupus and APS anyway and just started another immunosuppressant this wk along with methotrexate and prednisolone so I'm not the best anyway!!
Often this sort of episode might be gone by morning which is a bonus but I just wondered is this something other people get??
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Sara_A
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Hi Sara_A. This sounds very familiar to me. It was a regular occurrence, a few times per week at least. I would just feel awful, shiver and shake but no temperature. Like you I'd have to go to bed to sleep it off. And permanently attached to a hot water bottle. It has much improved, I think because I'm on daily steroids and aza but can still happen every now and again. Don't have an explanation but I'm presuming it's inflammation based if steroids are helping? I wish I didn't have to take the them though ☹. Hope the new immunosuppression helps for you and you are feeling better soon. x
Hi sara_ASorry to read your not feeling great. Your symptoms do sound like a flare starting because they're very familiar to me too.
Interesting though you've just started on a new immuno-suppressive and you already take 2 others. Thats a lot of medication and you have to watch out for infections. With us it can be hard to know if we have a flare or an infection because symotoms are so similar!. Some immuno-suppressives like mtx if you get symptoms like you have when you've just started it you must tell your gp . specially so if you worsen too!.
Have you had your vaccine?. You may be reacting to that?.
I do hope the new drug helps you feel much better soon. Keep safe and take care. Xx
Hi yes I've had both my vaccines I had my 1st dose in dec and 2nd 3 wks later in Jan I was very lucky to be one of the 1st to get it as I work in primary care and got it just b4 they announced the 12 wk gap! X
Yep, that’s me too. Until November last year, I was taking Hydroxy 400mg and had frequent episodes of what I called ‘done too much moments’ like you are describing. Flu like symptoms, especially early evening. I would just cut my losses, go to bed, armed with hot water bottle and paracetamol and in the morning I would be ‘ok’ and ‘ready’ for the working day.
Since I’ve become much more aware of Lupus and how it treats us( mainly due to the wisdom of everyone on this forum) I’ve realised that I should have taken heed of these flares and done something about it..... hindsight is a wonderful thing!
I’m now off work on long term sick due to needing more invasive treatment for lung disease linked to lupus but on a positive note, I don’t have flu flares at the moment! 🙃 I’m guessing that’s due to no work stress and being able to sleep just when I want to! Every cloud and all that....! 🙄😉
Wishing you well on your lupus journey, hopefully the additional medication you are taking should help to ease the symptoms 🤞
I have Lupus SLE and APS and although I have known about APS for about 4 years and Lupus for over a year I am still learning.
I almost normalise a lot of my symptoms as just how I am. I have a constant tight feeling in my thighs and knees. I got so hot like I’ve got a temperature and it wakes me and I also go so cold I’m tense and achey.
I read some people saying they wished they paid more attention to these ‘flares’ but I always wonder what difference it would make if I pay attention to them? There can be 6 months between specialist appointments so I guess I don’t always fill him in as when I see him it might be a good week or month so it’s not an easy illness to explain, navigate or understand is it.
I do try to help myself where I can with lifestyle.
I take my warfarin and hydroxychloroquine at the same time everyday and I ask for further tests where I have suspicions or a query but I’m not sure what else I can do as even if I am paying more attention to flares how can that help me in the long run?
I’m finding recently the fatigue is awful. I even think you can see it in my eyes. And I’m in bed early and literally fall straight to sleep so much so I don’t remember going to sleep haha but I think this my life now... tired.. early nights... I can’t imagine how much worse the fatigue will get when we come out of lockdown and I have an actual life...
Somehow I've managed to get out of bed and get the kids off to school they are 5 and 8!! It was a serious battle I did just want to cry!! I have arranged for the dog walker to come and now I can go to bed!! I didn't sleep that well and woke with a blinding headache this morning.
I have just been in a constant state of flare really with my joints since having my daughter 5 yrs ago and just cant get it under control as soon as we try to reduce my steroids back to my 5mgs maintenance dose my joints flare up again so then I end up on 15- 30mgs and have to taper back down slowly and only get as far as 10mgs and still have joint pains on that. So hoping the sulfasalzine helps along with the mtx injections. I'm on a lot of drugs 30 tablets a day which is ridiculous really!
Thanks guys it helps to know it's not just me though I wish someone could tell me what this leg pain is!??
Hi Sara, I get this type of thing regularly. I have Vasculitis and I have mentioned this to my rheumatologist as it is so strange and like you it lasts 12 - 24 hours. I have to say when I mentioned it it was dismissed so thought I was imagining it, so to hear your experience means I am perhaps not imagining things. Have you mentioned it to your doctors, if so what have they said. Anyway thanks for sharing this and best wishes 😁
Yeah I have mentioned it to my rheumatologist before and like when u mention anything else 'new to them' it's kind of brushed off. So I still have no idea what these random leg pains are. I'm feeling a bit better than I was I still don't feel 100% or back to normal yet but def better than last night. I still have a really bad headache like my head is in a vice but then I do get headaches most days. I rang the gp a couple of weeks ago about my headaches as they were so bad everyday and she just said 'have u got children..' 'I'm sure they will get better once the kids go back to school!!' I was a little bit taken aback! I have headaches because I have aps and lupus not because I have kids..yes the kids often can exacerbate them Haha!
Sending you feel better quickly wishes. I totally understand how you feel. I also like you have been in what feels like a continuous flare (a few better days) for many years.
My symptoms sound extremely similar including leg pain, feverish without a temperature etc. I get the usual joint pains, lead legs but also sometimes a sharper calf pain. Unfortunately, I don't know what it is but wanted to sympathise with you.
I also am forever having steroids increased to 30mg and reducing back to a maintenance of 5mg (including now)
It is good you have had both your vaccinations. Which did you have? Any reaction? I have had my letter for over a month but still haven't been able to go with flaring and being on higher steroids.
I had the Pfizer vaccine. As long as it's only ur joints that are flaring and u haven't got a fever u should be ok to have it?? I was probably on about 15mgs when I had mine and on methotrexate i did my injection the same day as my vaccine too. I was absolutely fine which i was surprised by as i usually have a few days illness after the flu vaccine, usually something similar to how I am now actually and in bed for 2 or 3 days. When I had my 2nd a few of my colleagues reacted badly with fever joint pains etc for 24hrs or so but I was fine thankfully- the one that has the immune problems and is immunosuppressed Haha but nobody actually rang me to check I was ok when all the others were sent home from work sick! I found out as I'm working my clinics from home and was like oh yeah nobody bother checking on the lupus pt!!
But seriously it was ok, obviously we never know how anyone will be from it but we do know how people can be from the virus.
Thank you so much for letting me know how you got on. That is fantastic you didn't have any problems. You have reassured me and I will try to book next week. I am still tapering back to 5mg prednisolone. I will ring my GP as I had a blood clot in the past and with all the recent press information I am going to ask if I should avoid the Astra Zenica one. I have no idea!
Yeah the only contraindications to not vaccinate would be illness at the time of vaccination so if u are otherwise 'well' u can have the vaccine. Hopefully u can have the Pfizer but I think in the grand scheme of things ie the total number of AZ vaccines given it's a very small percentage that have had a clot but still a concern esp if u have had a problem in the past its understandable.
Totally agree with you. Feel I should be slightly cautious given the blood clot history (after flying). I am fed up with shielding so the sooner the better.
Yes, I have recently - last week, in fact - had the exact same symptoms but I was shivering. Had a Rheumatologist appointment this week but they didn't see me during the actual symptoms. I'm also on pred (under 10mg though) and azathioprine.
The usual was done: bloods, chest examination etc. but nothing came of the appointment. They're just going to observe because I told them it will be back again due to experiencing these symptoms twice in the space of 3 weeks.
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