What do your flares feel like?

well after an immense amount of suffering and selfmanagement i finally thought i was starting to improve?so after part time work and a social event ,guess what???i can only assume im in a really nasty flare?Weak,nausea,hurt all over even behind my eyes,sensetive to everything ,ringing in my ears ,muscle twitches,my lymph glands kill in my jaw,i feel poisioned ,like all my nerves are exposed,i havent got a bug it feels like a bad flare ,to assits this i lie here in bed unable to sleep because im in too much discomfort if thats makes sense?at night i dont sleep either it seems the more unwell i become the worst i sleep ,which i find really hard to understand as my body needs to repair,i feel completley alone in this,i would love to hear how you guys feel when in a flare ?and how quickly they come on and how often you get them ,i seem to flare all the time,every couple a weeks ,and ontop of all of this im really struggling with the emotional side of things its so much to deal with ,i have a husband but he has to work,we have a ten yr old daughter ,we have no family around and im getting worried for our future,our family are over in u,k were in the channel islands and as they dont see us very often i really dont think they understand?and how individual this disease is,they just assume i can get on with it go to work etc as millions of people with lupus do,i would if i could and everytime i try i end up ten steps back .o.k well thanks for listening im pretty scared at the moment and feel very alone ,hopeyou guys are managing lupus well?brave;)

22 Replies

  • Firstly, try not to get into the negative thinking trap or worrying all the time. Stress saps whatever energy you have left and the immune system goes berserk thinking it is being attacked, so a flare will come up without fail. If you can't get the worry out of your head, try and get some calming pills for it, it is worth it in the long run.

    From experience, I have noticed that stress and bad diet always trigger my flares. By bad diet I mean eating cakes, chocolate, bread, wheat, dairy, drinking alcohol, all as a normal person, not ott. Which is why I'm so conscious now do what I'm eating and how often I have 1 small glass of wine. Stress is difficult to manage but I'm trying to control it as much as I can and am looking to start yoga to help.

    A flare is such a personal thing. Mine start with numbness in my arm and hand, then fatigue, then excessive sweating, hair loss, chest pains, breathlessness. They can last few days or few weeks for me, I never know.

    I feel for you, you are having such a hard time and you're so isolated but it will get better, you will see. Try not to look into the future for what it might be, no one knows. Focus only on getting yourself better day by day, slowly but surely.

    I wish you courage to get yourself through this - just like your avatar, to be brave. We are all here willing you forward and wishing you well. Xx

  • thanks purple top ,nice to hear from you ,im totaly breathless,my neck feels like i have the mumps,im drinking ,eating ,and just generally feeling p---ed off,i want to feel well so bad ,i want to work , i want to be a good mum etc,swim as i used too ,its all being taken away how can i feel positive about any of that?and to top it all i react to most meds,ahhhhhhhhhhhhhhhhhhh!x

  • Hello,  I haven't been diagnosed with lupus. ANA test was positive but lupus test negative. I go back to doc in 2 days who will retest me. In 2 months,  ive had 2 or 3 good weeks without being tired& exhausted. May I add,nervous, extreme worry,warm body, weakness all over,  breathlessness, anxiety, emotionally distress, feeling like I have a virus running through me. Pressure in head,  fogging,  no clarity, forgetfulness etc.  Been to ER often,  blood work looks good.  Had an MRI& CAT scan that showed 7mm issue on right side of brain& changes in my chest.  More test coming soon i suspect to see what that is. Also,I'm a very spiritual person& i have been praying, seeking prayer from Christian leaders I know, noone picks up sickness when they pray but pick up the same thing spirituallyr about other things, this is done without them speaking to each other.  Sigh,  i'm lost for words but, trying to see how to deal with exhaustion& mental worry& stress ? Any suggestions? I have a 9 year son & am a single mom. Energy is necessary to care for him. Suggestions?  

  • Hi brave, It sounds like you are going through a very diffciult patch at the moment.

    I know what it is like to have frequent flares I go through periods like this, I often have a flare when I have a period. during a flare my fatigue is overwhelming i cannot do a thing just want to sleep. joint pains flare up, I have chest pains and breathlessness even at rest, one sided headach, pulsling around body, itching all over and lupus fog. I found working caused constant flares of lupus because this activity put a lot of stress on my body. I eventually had to stop because i coud not sustain it due to constant flares, which led to eventual relapse.

  • Im relapsing all the time ,i find this so hard because compared to this time 12 months ago im a former shaddow of myself,for 16yrs i managed this disease not kn owing it was lupus but ,Docs had said M.E and fibromyalgia,in that 16yrs ,the first 12months was vile as i didnt know what was going on ,neither did the docs,but as i was 22yrs old my body seemed to handle it better,then i would say i had a few flares every year for next six years ,then a big one that lasted 12months with the added lymph gland involvement ,i then got pregnant and had a pretty average pregnancy ,after i was unwell for some time and it took around 4yrs to settle ,i still had symptoms with very small flares ,i then threw myself into sport as at the time my connective tissue didnt stop me exercising ,i would always suffer after sport and took ages to recover but still pushed always ,untill 12months ago when i seemed to get some new symptoms which sent me to the rheumy and then it went from there ,now im limited to everything and as purple top stated trying to do the norm has it consequences,as im still finding out ,i get angry as i think well my lupus had a particular pattern before for 16yrs so why has it changed now?to me it seems progressively worse?so wish for respite ;((thanks for your advice;)

  • Hi Brave, this does seem like a really typical flare and i do feel for you and yes after years of having what i thought were "bad" flares, the last year or so i have had really rather regular horrible flares. I describe them as though a vampire has come in and sucked nearly all the blood out of you and left you with just enough to keep you alive but with no energy for anything but unable to sleep, lack of concentration my joints so swollen i couldn't even lift a book. What i did start to realise is the more i stressed the worse i got and when you have children you feel you are not doing what you set out to do but your are there and that is the most important thing. I moved back from Ireland over 3 years ago and i do understand the isolation my husband had to work and i have 4 kids and i totally understand the whole family in the uk not understanding or getting it. That used to drive me mad especially when my sister-in-law used to come over to "holiday" and tell me how well i looked and what a good colour in my cheeks i had!!!!! sometimes the lack of understanding used to drive me mad. What my husband always says and it has helped me alot is just go with the flare don't work against, this is part of our lives now and if we accept it we can work with it..... well try!! I wish you all the best and you are the first person i have messaged on this, your circumstances really struck a cord with me. xx

  • Thankyou for your thoughts on this ,i love the vampire explanation,thats totaly how it feels,i wish i could sleep through a flare;(

  • Hi Brave, I feel so sorry for you. I always think flare ups have a mind of their own and I'm always grateful now if they don;t last too long. It must be so hard having a family and no family networks nearby:( My shortest flare up was for 4 days and the others have been for weeks and others that I find hard to establish whether it is an infection or a flare up - they sometimes seem to blend into one another. I know when it's a really bad flare up because I also think differently and wonder how I'm going to get through it. Like Kezzie said it does pass and better to go with it. It is very difficult to describe a flare up to someone who has never experienced it. How can we look so normal too when we feel so rubbish? Tonight I am having what I call a minor flare that seemed to come on out of nowhere and I find that taking myself into a quiet room helps, not always easy with a busy house like ours though. I hope your flares subsides very quickly, horrible things that they are. Thinking of you. xx

  • can i ask what classic symptoms you get when in a flare?

  • Hi, usually starts with fatigue/aches and mouth ulcers. I also have polymyositis so more weakness in legs, difficulty getting out of a chair, walking up stairs, raising arms up. The stiffness in legs worsen and arms/legs/neck feel stiff and tight. I also have chest pains/inflamation (costochonditis). I can't cope well with noise/lights, even hearing someone scrape a dinner plate can sound soo noisy. My stomach area/torso is often affected now (just under lower ribs). My hands get very painful, inflammed making it difficult to do up buttons etc. I often lose my appetite dependent on how bad the flare up is. Previously I have have found it hard just to lift my head up from the pillow. I can't concentrate easily and when I'm talking I lose track of what I was going to say next. My joints at wrists/elbows/knees are inflammed. I often then get UTI's/chest infections.

    Tonights mini flare seems manageable, sensitive to noise/lights, pain in right breast, stomach ache, tenderness in hands, holding onto legs when getting up from the chair. I can't believe now I grade these flare ups and think oh this is ok or I can manage this one if I take myself off. I can;t believe it's such a list and probably there is more but once a bad one is over - a bit like having a baby I delude myself that it was manageable as daft as that sounds. Hope this helps x

  • do you get tender lymph glands with any of your flares/symptoms?thankyou

  • Hi Brave, it's mainly more stiffness/achyness in neck, shoulder blades and back. Ah I forgot that I often have to heat up a lavender pillow in the microwave to ease this. As far as I know it's not lymph glands though. About two years ago at the start I did have swollen glands but this all seems to have eased.

  • Hi Brave, I am new on here, although I have had SLE with organ involvement for 40 years and am so sorry that you are having such a rough time. As time goes on you do learn to live with it as best as you can and eventually it becomes part of the norm. When in a flare I take a couple of paracetamol and hot water bottle and take myself to bed - there is nothing better than warmth for those painful aching joints. I would like to ask you what new set of symptoms sent you to the rheumy? The reason is I am very concerned about my daughter who was also diagnosed with ME and fibro at 14 and she is now nearly 23. Over the last 2 years she has had swollen painful glands around her neck and her face, hands and feet are swollen. It has changed the way she looks and is very distressing. She also has a rash on her hands and now a slight rash on her cheeks and her fatigue is increasingly worse. I fear she has also got lupus and have just taken her to the docs with severe chest pains and constant stomache pains. She is going for a blood test tomorrow for Lupus and has an appointment at the well being clinic for counselling. My point is that everything I take her for is blamed on ME/Fibro and a lot of symptoms for this overlap with Lupus symptoms. A lot of doctors still do not believe in ME and do not take it seriously so I find it difficult to get any tests done for her and often feel it is a complete waste of time going to see the gp. She has never been able to work because of her endless symptoms and her emotions are all over the place. My mum was diagnosed also with Lupus and Sjogrens about 10 years ago so I am extremely worried. Her symptoms are very much the same as yours and I was wondering how you managed to get a rheumy appointment as I know blood tests do not always show up Lupus until it is quite far ahead. When I was diagnosed at 14 I was rushed to Oxford and at deaths' door as it was quite rare then and had a fantastic consultant who basically saved my life. The care is not the same now as it was then and I know people wait years to get diagnosed. I really hope you get some relief soon, maybe with some different meds. I am not on any meds for Lupus at the moment although there is Lupus activity as hydroxychloroquine damaged the field vision in my left eye and I cannot go back on steroids. I have been offered other meds but due to the side effects have refused them unless there is evidence of any further organ damage or it is a case of life or death. I have been off meds for about 18 months and just deal with the flares as and when. I have other meds for thyroid, stomache problems and of course pain killers and am at present managing quite well. I wish you all the very best and sorry for the long blog! x

  • Hi,in terms of rheumatology ,i was sent after a positive ANA result and given my 16yr history and evr worsening symptoms i was diagonsed with sjogrens,fibromayalgia and ??/lupus,since then and the extra symptoms including an array of neuro symptoms and bladder problems and the pattern in which these flares seem to happen and what brings them on including heat and sunshine im now being treated for lupus,my mother had M.S but passed very young 56yrs,i have overlap autoimmune as most of us do ,i dont respond well to medications they seem to exacerbate my condition so i ride it out with painkillers on a daily basis,because of my nerve symptoms i have been pescribed other meds but hold off unless its un managable as the side effects are horrid,as far as M.E i was diagnosed this following years of unexplanible symptoms ,when i then had lymph gland involvement they then said it was classic M.E ,i do fit all the symptoms ,however as time has gone on and a worsening and new symptoms and a positive ANA result its now lupus and overlap ,sjogrens ,fibromyalgia,either way its exhausting and im just about over consultants and the amount of hard work we do for them before and during the appointments,im really going to try a strict diet of no gluten etc,and try to follow an anti candida diet ,its going to be hard but im desperate ,in terms of your thyroid ,i have suspected issues and was wandering if this was contributing to my symptoms?I hope you find managment for your daughter?i know at that age how hard it was to struggle with work ,i really had to go partime and even then the emotional exhaustion of trying to convince my employer that i was genuinley unwell was hard as of course we always look average,also trying to convince family i was unwell and still to this day even after diagnoses i still dont think they understand?i wish you all well.take care brave.

  • Thank you so much mstr. Your list of symptoms and problems were such an eye opener for me. I am newly diagnosed but have been poorly for years and your symptoms just mirrored mine. It made me feel that i was not just being soft and needed to pull myself together. I have could not hope to describe the fatigue to my family but here i can see everyone has been there and for once i do not feel alone. I have been taking Hydroxychloroquine for just over a month and am praying it is going to help as life as i knew it seems to have gone x

  • Aw thank you so much. The hydroxy helped with the fatigue but I can still get it nearly every morning. It takes me ages to get going - not necessarily in a physical way but also a mental way. I don't know why this has happened but it just has:( I really hope it helps for you and I guess that it why we are all here for each other on this site. Take care x

  • Hello Brave (and everyone else)

    You sound like you are having a rough time of it at the minute (gentle hugs).

    I was diagnosed with Lupus (SLE) about eight years ago, and more recently with fibromyalgia and joint hypermobility syndrome too. My symptoms are relatively similar to those already mentioned on here, but I do tend to 'crash' (as we call it) quite a lot too! For instance, on Sunday I sat having dinner, then the next thing I'm on the sofa with a blanket around me! Apparently I just 'crashed' at dinner so hubby picked me up before I fell in my food and moved me to the sofa! This morning when I didn't make it downstairs, hubby found me curled up in the shower tray! bubbles still in my hair and water running everywhere! Luckily he is strong (I'm not the lightest person and I have gained at least 10kg since being diagnosed) and he can pick me up and move me when necessary!

    The main issue I have had with myself, is 'acceptance'! Once you can begin to accept that you are not who you were; can't do what you did; won't have the same friends and your family probably won't understand, then you are nearer to being able to deal with everything thrown at you! :-) I know this is really difficult to do, really difficult to continually accept, but it is the only way to be able to cope with what is happening. Once you accept that, you can start to look at alternative ways of doing things, different methods of doing what you've always done, and changing your behaviour as you learn to listen to your body.

    Rest time now.. otherwise I would write more! Take care. Laurie.x

  • thankyou ,acceptance is my goal ,its exhausting

  • Laurie, can you tell me how you've been diagnosed with joint hyper mobility, please? What did you experience and what tests have you done to get to that diagnosis?

    I have recently been to an osteopath to try and resolve a pulled muscle and she has told me that my spine is quite floppy and the ligaments are loose, which is why the muscles contract, to protect the spine. Having heard of hyper mobility syndrome, I'm now worried that I might have it but when I mentioned it to my rheumatologist, he didn't comment on it at all, so I didn't insist that time (I had other things I needed answer for, so I'm keeping this for the next time).

    Many thanks for your help.

    Brave, apologies for hijacking your post!

  • Laurie, you sound like you have a good handle on it now. Your post struck a chord with me regarding the whole 'crash' thing. I just explained to my mum on the phone how I crashed last night too. It comes on often unexpectedly and can be after what I think is a 'good day' for me. I'm glad to know I'm not alone in this as this is when I struggle and get frustrated with it all. It feels like it's got to be an activity, rest, activity, rest....but the rest bit seems to have to happen more or the crash occurs. That's when I need the quiet room scenario. Thank you for explaining that so well and I;m so sorry to hear you crashed in the shower, big hugs to you. When someone explains it so well as you have it makes me realise this is not all in my imagination. Marion x

  • Brave, yes apology for also hi jacking your post to reply to Laurie too. Hugs to you too Brave xx

  • I am so glad I read your post Because I've never heard anyone else say they crash That is exactly what happens to me .im just coming out of a relapse 4 days in bed and now into two weeks of slow recovery .Fortunately after twenty odd years of dealing with the knowledge that I had Lupus I know exactly when to get to bed I've even crashed in my local supermarket before years ago before I knew the exact start of my relapses For me my first sign over and above the usual exhaustion is a very sore throat with difficulty swallowing So I just take to bed and rest and like you have learned to accept that this journey we are on is difficult and we never know what else will be affecting our bodies Thank you so much Take care x

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