Is this flare pattern normal?

I know everyone's disease is different, but I'm wondering if anyone has the same kind of flares as me.

I have episodes, usually about a week long, of terrible, disabling exhaustion with incredibly heavy limbs. This means I walk at the speed of a 90 year old and struggle to stay upright eg when I sit down my head lolls back against the chair and it's a huge effort to stay upright. I have the brain fog too and increased joint and muscle pain, but it's really the fatigue that is the most disabling thing. Does anyone else have this to this extreme?

Ive had three flares like this in the last 7 weeks, and they have all followed within a day or so of unusual activity eg I went away for the weekend for first time in months, and this latest one seemed to start when I had friends over for dinner on Saturday - which took a lot of preparation beforehand.

Have others had a) the same kinds of symptom and b) the same kind of flare pattern? I am on hydroxychloroquine and amitriptyline but surely if I'm having these flares (and missing a week of work each time) I'd be justified in having steroids? I've had one steroid injection in the summer and it helped massively. If so, do others get steroids from their GP or do you go through your rheumatologist?

Thanks in advance

11 Replies

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  • In all autoimmune disorders fatigue poses a problem. The medication has little effect on it - because it often doesn't actually stop the disease process, it deals with the symptoms. The fatigue is due to the effect of your immune system attacking your body's tissues by mistake, thinking it is "foreign" in some way. That leads to a sort of "flu".

    The fatigue has to be dealt with by lifestyle changes: pacing and resting appropriately. You admit yourself that these fatigue attacks "have all followed within a day or so of unusual activity". You will have to learn to cut back or "manage your spoons":

    butyoudontlooksick.com/arti...

    It's hard - but that is the reality of autoimmune disorders and this community has had a few articles about it:

    healthunlocked.com/lupusuk/...

    healthunlocked.com/lupusuk/...

    The fact that there are 2 such topics tells you that yes, it is a common problem!

  • I can so identify with the struggle to stay upright and head lolling back against the chair. (It's kind of awkward when the head lolls back but you don't have a high back chair and you're trying to look sane in a social environment!!)

  • Your comment gave me a good laugh. The lolling head is sooo hard to hide. Loved your expression...'trying to look sane in a social environment.' Thanks

    Foss

  • I'm having a flare now lasting 10 days now. All of your symptoms plus rash on face w terrible firery itching, less itching at arm pits, bend of elbow, thighs. I saw my rheumatologist today, got a shot of cortisone and will be taking 10mg prednisone each morning daily until two week follow up in two weeks. Unspecified connective tisssue disease (pulmonary fibrosis, lupus, dermatomyositis, etc.). My best Med is prednisone, the others make me sick daily...I said no more! I'm 79 and want feel as well as possible with the time I have left...hoping to continue on prednisone for flare ups. Stay in touch Luckjc, I'll keep you in prayer 🙏😐

  • Hi luckyjc

    Sorry to read what a struggle your having with the fatigue. It can really impact massively on our quality of life!. It's a shame it's spoilt the achievement of you doing things you haven't done in months!. Hope it won't put you off. You ask about steroids as an injection has helped you. Did your Rheumy give it you?. Usually they do , are you due a visit to him?. You could always try bringing it forward by going on a cancellation list. A short course of steroids can also help as the fatigue can be caused by the inflammation so gets better by damoening down the inflammation!. Sometimes GP's agree to this so worth asking yours about it. If not then worth asking your Rheumy about it.

    I hope I've helped and your better soon. Misty.

  • You need to learn to pace yourself try not to rush stop for a rest often don't be lifting to much and stay away from stress if you can .

  • Hi, what you are describing is so familiar to me, it sort of makes me feel better. Your other responses give such good advice I can't really add anything except to say that pacing yourself is the only way. If you know you can't, then be prepared for the payoff.

    Tough isn't it.

    Foss

  • My daughter has been on and off steroids for the past yr. she's had shingles 4 times in 6 month period, swollen glands,feet problems, hair loss,and flares start about 3-4 days after steroid tx ends. I'm so worried because she is having to take the steroids so often now, her rhumy says they may need to change her tx so I hoping for the best. If you were to ask her the steroids give her so much relief for a short time.

  • Hi there,

    I am sorry to hear that you are experiencing these issues.

    We have some advice on coping with fatigue which you might find helpful.

    You can download or request our leaflet on fatigue and lifestyle here lupusuk.org.uk/wp-content/u... and we also have a blog article on managing fatigue lupusuk.org.uk/managing-fat...

  • You might want to speak to your rheumatologist, as it seems that the hydroxychloroquine may not be enough to control your lupus flares. Steroids are good for quickly reducing flares, but long term, the rheumy may want to try other meds like azathioprine, methotrexate, MMF, etc.

  • Hi LuckJC, sorry to hear you're having such a rough time. I've been in flare up for the past 3 weeks - longer than usual. That's what's so frustrating about Lupus, you never know when it's going to raise it's ugly head ! I've been on Prednisolone for years & have pulses (3 drips over the course of a week) when it's particularly bad - waiting for appt at the moment. Rhuematologist stopped Azathioprine in the summer as was being sick a lot. Cyclizine has helped that & just waiting for bloods to see if I can go back on it as had more flares than usual since coming off.

    The awful fatigue/exhaustion was the main symptom I had before I was diagnosed 17 years ago. I was still working as a nurse & I would fall asleep in handovers & at meetings. I'd feel like I was walking through glue, couldn't think straight & looked and sounded as though I was drunk ! (I'd have to go home as it obviously wasn't safe for me to be caring for patients in that state) Fortunately my employers & colleagues were very understanding & knew tere was something seriously wrong. Sometimes when having a meal the friend next to me would have to pull my head up as it was almost in my dinner plate !

    I agree, although the joint & muscle pain and weakness are very debilitating the extreme fatigue is the most disabling. Even when pain & stiffness is pretty bad, there are still things I can do even if it's just reading, watching a movie or going online. When the fatigue hits, there's not much I can do. Even simple things like making a cuppa take so much effort. I can hardly string a coherent sentence together & completely forget things.

    As others have said, it's about adjusting your lifestyle as necessary. Over the years I've learnt that if something "biggish" is happening, such as a weekend away, a full day out somewhere, I've got to get plenty of rest, a good nights sleep beforehand. I pace myself & try to be realistic about how much I can do without paying for it afterwards. As an example the last "biggie" I was away with Sis, staying with friends for 4 nights. We had a wonderful day out at a village that was having a 1940s weekend. It was warm & sunny so the sun-block went on. They know my limitations too so we just strolled around at an easy pace. It was wonderful but we were out all day. I knew if I wasn't going to pay for it I'd have to have a "rest" day the day after. The others went off somewhere else & I just relaxed all day in their beautiful house, reading & watching the golf ! I re-charged my batteries & the following day I was able to go out with them again.

    I don't let this illness rule my life, but I've learnt by trial & error how to best manage it so I can still get the most out of life. Keep in touch as this site is a Godsend - I wish I'd joined years ago ! Though I've got wonderful friends & family, the only folk who truly understand are others with the same illness. You're not alone LuckyJC, we're all here for you

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