Should we be symptom free when not in a flare???

[brave]

Just fishing for some info guys,are any of you symptom free when not in a flare ?or is it we still get the symptoms but just not as intense ?i can honestly say im never symptom free ,and then a flare is the same symptoms just extra intense !is this normal for lupus i wander?or do you all still suffer permenant symptoms also?i was driving my daughter to school this morning and thought how would i describe the way i feel today? ,at that point i felt like i was about to walk across extremely thin ice across a lake ,it was cracking but would i fall in?????well after doing a few chores ,i fell in !so now im wandering how will i get back out to carry on with my day?just a thought i wanted to share ,take care to you all ;)))

[Sher78]

The easy answer is no brave. It can differ with everybody but even when I'm not in flare (this 1 has lasted so long I'm surprised I can remember what it's like NOT 2 b in 1!) I still have problems with fatigue, joints, Raynauds & all that malarkey, granted it's not as intense but I will have the odd day when I really can't do much at all.

[brave in reply to Sher78]

thanks again

[marypw]

I agree with Sher above; sometimes I feel better than others, but since I've been diagnosed I've never had a day without aches, pains and tiredness. Sometimes I have a flare which usually starts with dizziness, upset tum, feeling shivery and then aching/exhaustion and have to go to bed for 24-48 hours. This happens once a fortnight/ten days - but it's taken a long time to recognise this as a pattern. Plaquenil hasn't made any difference.

Family and friends find it difficult to understand that there really isn't any treatment to make you feel 'normal' again. From talking to other lupies, everyone seems to have different experiences.

[brave in reply to marypw]

i used to get pattern of flares,now im just steadily getting worse !scares me as i just want it to stop ,and a new addition is this awfull bloated ,nausea ,feeling ,that i cant get rid of ,if i eat it kind of eases for an hour and if my tummy is empty its ten times worse.really dont know what to do with myself ?is there any medication you take for your tummy?

[Sher78 in reply to brave]

I've found although I aint allergic/Intolerant 2 it, I seem 2 have a bit of a problem with wheat & gluten now (which I never used 2 have until recently) so now I tend 2 get bloated & feel really uncomfortable if I have bread, pastry etc so I limit myself 2 only a little bit of something like that a day (usually I opt 4 cake or cookies rather than bread!). Luckily though, I had 95 % of my colon & 95% of my ileum removed when I was first diagnosed so the food goes through me quite quickly & I'm fine then ;0)

[brave in reply to Sher78]

Why did you have colon removed if you dont mind me asking?did lupus attack your stomache ?thats awfull for you ,x

[KathinAyrshire in reply to brave]

Hi Brave, bloated nausea, only eating seems to help for a short time, snap! Somedays can't even keep water down, the only drug I have any success wuth for the tummy is Omeprazole. Take one with water on waking, then wait for at least half an hour before the first cup of tea. It's a long half hour but if i beat the clock the tea comes back. Normally then can keep stuff down, but not always. Could not survive without that first pill, followed by all the others of course!

Try not to let your tummy feel too empty, just a sweet heavy on sugar helps, I use Clarnico mints the nice soft ones. Just think though, you have the most marvellous excuse to eat what the heck you like over Christmas.

Take care, hope you soon have a good bright day.

[Sher78]

Of course I don't mind u asking. I had a laparoscopy when I had the stroke as they were trying 2 work out why I'd had it & when the went in I was riddled in blood clots & had a massive 1 wrapped around my colon (I'd been vomiting 4 the last 6 months because obviously whenever I ate something it couldn't go anywhere so can straight back up). They said I was literally days away from just being strangled 2 death. They removed my colon & I had a colostomy but they hadn't sussed it was lupus or APS & put me on heparin 2 disperse the clots & because my blood got so thin I ended up hemorrhaging from the stoma (colostomy site) which ruptured my ileum so I had 2 have THAT removed as well & ended up with an ileostomy. Luckily once they sussed out the lupus, APS etc, they managed 2 reverse it & reconnect everything so I literally have an inch of colon & inch of ileum stretched 2 Hell joined up 2 each other lol! Food tends 2 go thru me quite quickly as obviously it doesn't take so long 2 b digested so if we go out 4 a meal, so not long after I've eaten I tend 2 disappear 2 the toilet which THEN prompts people 2 believe I have bulimia or something which trust me would NEVER b an issue as I love my food far too much & hate waste ;0) U'd never know in all honesty unless u saw all the scars on my stomach but even then, they're all really neat scars & have faded really well x

[janekins in reply to Sher78]

Hi Sher

Was this when you were 16? You've really been through the ringer haven't you!!!

I'll pm you later if I don't fall asleep x

[brave in reply to Sher78]

What a ride you ve been through,i wish good health always

[kittykat68]

OMG POOR sher im not one to feel sorry for but when i hear other ppls storys it makes me sad 2 thing there are soooo many of us sufferers why is there not more awareness my lupus took 14 years do dianoise

[Sher78 in reply to kittykat68]

I just consider myself lucky & very fortunate that I had an excellent surgeon & fantastic Consultant that were determined 2 save me. I lost over 15 pints of blood on the operating table that day (they said as fast as they were pumping it in it was just pouring back out), my heart stopped 4 10 seconds & bearing in mind that it was 11:45pm when they rushed me 2 theatre & they were in there with me 4 8 hours, well, if it weren't 4 them I wouldn't be here & would not have had such a quick diagnosis, but some of the stories I myself have heard over the years, what I went through really pales in comparison

[Melinda]

Sounds awful Sher, what you went through. Something simular happened to my sister. They couldn't save her gut. She had a small bowel transplant which her boby rejected. Lupus is such an insidious disease, but you never think of it affecting the gut.

Glad you came through it all.x

[Sher78 in reply to Melinda]

Exactly Melinda, there r SO many things in can affect either directly or indirectly that we really wouldn't think of. I hope u're sis is ok now. I'm glad I came through it too :0) x

[margareth8537]

Hello Brave and all

I have had Lupus for over 15 years. Every now and then I have thought "Gosh, I feel well today!" - for a few hours. Then I have another flare and it is back to normal.

I often feel reasonable, but I think that is just because pain is the normal situation. But often it is manageable. Fatigue is the same. Normally I can cope, because I am so used to it, rather than it not being there.

I think what I found difficult at first was how long a flare could last. I couldn't understand how it could be called a flare when it went on for months!

Now I am just very thankful when I start a day feeling reasonable, and even more so if I manage to finish the day the same way - I am going through a quiet spell at the moment!

All the best to you all. Enjoy Christmas and don't get too stressed out!

Margaret

[Gillyg]

I used to go to st Thomas in London and was told that it doesn't always go on blood results but on how you feel. I am never with out some pain or fatigue just depends on what I am doing. I went to see my consultant yesterday he is very good , I am in so much pain couldn't believe I wasn't in a flare with shortness of breath which is what I seem to get with mine SLE but he said it was my Fibromyalgia that was making me feel so unwell I didn't realise you could feel so bad with it. He said fibromyalgia can affect life just has bad as SLE. He said I needed to become less stressed but how can you feel less stressed when you feel so unwell. I really do try and keep stress to a minimum knowing it causes a flare but at the moment i can't help but feel down. My family who are wonderful keep telling me I need to stop worrying about everyone and rest so on and so on but they don't realise how lonely and frustrating that can be at any age never mind mine 56. When you life is passing ou by at an alarming rate. Sorry going on please forgive me. 30 years of pain and feeling so ill must take its toll on our minds just wish people would understand a little better and let me feel down sometimes it is hard to feel positive all the time. Have a happy xmas everyone and try and keep out of hospital. X

[brave in reply to Gillyg]

I get you gilly g........im 38yrs old,life changed at 20yrs ,although it did start in my teens ,always full of ailments and made to feel a raving hypochondriac.I AM NOT !i sceam,i feel we all deserve a medal for dealing with this vile disease,someone said yesterday ,well lupus is ONLY a form of arthritis !i felt like punching her!if it was just joint pain i reckon i could cope better ,but lets face it ,its a whole lot more than just joint pain?my mum passed at 56 yrs after a very long suffering ,we as a family always judged her moods and behaviour ,poor bugger ...she was in so much pain and huge disability ,i only wish i could turn back time and understand her more , i didnt at the time ,but i certainly do now ,its a little to late though;( at least we can all relate in some way to eachother ,i wish you good health ,take care ,brave

[Sher78 in reply to brave]

well done u 4 holding back, I would've launched in2 a tirade of foul mouth abuse & THEN punched her! People can b so small minded & ignorant & should maybe think about what they're about 2 say b4 opening their gobs. Grrrr, arthritis indeed! Sorry about u're mum brave, sadly hindsight is a wonderful thing & if I can say 1 good thing about having 2 deal with all this sh*te is that it's taught me 2 never judge a book by it's cover cos u never know the full story x

[Gillyg]

Thank you, that was a comment I needed today. My mom was the same as yours died at 60 I was only 29 at the time she was always ill I often wonder if this is what she had. I don't think I understood really what she was going through I would have looked after her a lot better. Miss her so much even now. I was Ill from 2yrs of age with severe liver problems I some how survived and have gone on ever since so many different things from 26 I started getting worse it took me 8 years for some one to believe me. I was once asked if I had aids so wish more information was available to people even GPS don't know a lot. Mine are not great so I just don't go so they think ou are fine. Thank you for replying and I hope you get the help you deserve, have a good xmas sending ou hugs. You were just what I needed. I don't like to keep worrying my children all the time they have had to go through so much over the years I want them to get on with there own lives. Xx

[MrsB2nd]

Brave, I am so glad you asked the question that started this posting. I have often thought that. I was daignosed 18 months or so ago and on Hydroxychloroquine.

I couldn't tell you the last time that I felt 100% 'normal'. My main symptoms - aches in my arms and legs and tiredness seem to be there pretty much constantly now.I accept this as my 'normal' If I take Naproxen and Omaprazil the pains ease, but the tiredness is still there. And when I'm taking them I seem to be bloated and constantly hungry.

I had a bad flare in July lasting 2 or 3 weeks needing steroids, but touch wood, ok since.

I have managed to work 2 half days this week and had 2 evenings out, not late nights, and I have to work 1 - 5.30 today and I do feel extra tired today - due to having a bit of a social life!

But we do have to have a life and make the most of when we feel ok, without overdoing it.

Ready for my day off tomorrow and week off next week

[fordo]

Hi all,

This is my first post. I started looking around online yesterday for forums because, though I was dx'd about 3 years ago, I've never had a flare...or maybe it is that I have never had a doctor say , yes, this is flare.

I was feeling crummy towards the end of Sept - fluey, sleight temp, and I had 1 DLE spot (I've got DLE/SLE?shurgren's (sp?)...my CRP was negative....the spot went away, another one came and went and I started to feel better.

About 2 weeks ago I got a sore on the roof of my mouth - hadn't had one before; then within a couple of days a second one, and then they both went. Then I did come down with something like flu and was in bed for 2/3 days. During that time I had a menstrual period that has been going for 9 days now, and the bleeding has been horribly heavy. I did got to the doc and got something for the bleeding, but it didn't occur to me until yesterday that maybe all of these things constitute a flare, or are worse because I am having a flare?

I have enjoyed reading through various posts and feel this may be a good place to learn as much as possible about my illness.

I've got 2 teenage daughters and a lovely husband who is very supportive. I also have a full-time job with erratic hours and have been blessed this week with no evening meetings. How nice to be home in the evening.

[rockchic]

oh what a good post ! i feel exactly the same ,i honestly cannot remember the last time i felt normal or well ,in fact feeling well is like a foreign word to me. ,even when i am not in a flare , which seem to be happening every month to 5 weeks i dont feel right. even if i nwake up after a reasonable nights sleep and think i dont feel to bad today i think i will go out , by the time i have had my shower put a bit of make up on and got dressed i feel like i have run a marathon and i find it almost impossible to get out and if i do i cant be out for long before my body feels like its about to give up on me !, w hat really annoys me though is when i have got a bit of make up on if i see people who know me they say YOU LOOK WELL , I THOUGHT YOU WERE ILL! if only they really knew whats going on inside my body . my boyfriend was nt much better he has never really understood my illness or understood what it does to me and my body some people can be really ignorant and selfish as regards this illness, feeling very depressed and alone at the moment ,so glad ive got this site, regards and love to all sufferers x x

[Purpletop]

My question is this: are the answers above representative of the majority lupus sufferers or only of those who have a more involved lupus? The hope being that there are other lupus sufferers who might have an 'easier' time with the illness and do not feel the need to contribute to/check this forum as we do, so their views are not reflected here. Or am I just deluding myself? You can see I've only been living with the diagnosis for 4 months, still a long way to acceptance...

[brave in reply to Purpletop]

i would assume purpletop that most people as i myself also would only join lupus u.k if they were a true lupus affected individual ?it would be a pretty depressing website to read otherwise ,so i would say this topic refers to the majority of us ?and its reasurring to know were not alone ,most of us on this forum seem to have a pretty involved lupus?and acceptance is impossible for me ,i dont know if i will ever accept ,i will be angry forever ;(On a happy note i wish us all a very healthy happy xmas ;)) keep well x

[Sher78 in reply to Purpletop]

I had a fair few years of feeling 'relatively normal'. Obviously I still suffered from the fatigue, aching joints, muscles etc but after a while, certain problems the lupus caused me became just a normal part of my life (it's amazing what u can get used to!) so although I was far from problem free, I had accepted it as part & parcel of the way I was. I do believe that I WILL reach that stage again (I bloody hope so anyway!). I agree with Brave, acceptance is very difficult, especially if u've managed 2 keep things pretty under control previously & even if u don't ever accept things COMPLETELY, maybe u will reach a point where u can kind of accept what's happening 4 the time being. I guess when people r having a really good period they don't come on this site much as they're too busy trying 2 do 'normal' things & taking advantage of the fact that they r having a good period. I've been diagnosed 4 over 18 years now & although there's a Hell of a lot I know about lupus, I still find I'm learning new things, even experiencing new symptoms even now! Hopefully u can reach a point soon where it kind of settles & becomes just a part of u (even if it's not a very nice part at all) Big hugs x

[Paul_Howard Partner LUPUS UK in reply to Purpletop]

I believe that the answers above probably aren't fully representative of the lupus population. Many who have their condition well managed probably don't use this forum much. It is mainly their for those who have questions about their condition and those that need support. Unfortunately, it would be very difficult to ever get results that are truly representative.

[Jennie_103]

For me, feeling OK means being able to go to work, come home, do something other than just lie still, go to bed, sleep OK and get up and do it again the next day. Most of the time that's working for me (on plaquenil) but I do have wobbles where I've done too much the day before and it all falls to bits for a week or so.

Pacing is definitely the key for me, but it's particularly hard at this time of year when there's so much going on with all the "end of term" this and that plus the shopping. Tricky to manage.

I know I'm lucky (relatively speaking) and I just hope my lupus/MCTD stays balanced for a while....

Jennie