Another night wide awake after having a glass of wine. I've noticed it over the last few weeks that when I go out for a meal and have a drink I just can't sleep, palpitations, my tremors are worse and muscles really hurt. Is this normal for Lupus suffers?
Alcohol has always been a treat and many of my friends like to drink but it's getting to the stage where I am scared to drink as I know it'll affect me badly. My friends don't understand and keep encouraging me to go out with them but I know I'll be tempted to have a drink so would just rather not bother. But then feel I'm just isolating myself even more and missing out socialising which has always been a big part of my life until this past year where I've been sick.
Could the hydroxy be contributing? As my stomach is quite upset more recently than normal. Usually it was caused by gluten. But as soon as I got in I had diarrhoea and I only had a salad for my meal besides the glass of wine so no gluten.
I'm already sick so the last thing I want to do is contribute to it and with fatigue really need my sleep. So I know I'll now be sick for a few days. My friend knows someone with lupus and she was she can't drink so I wondered if there was a connection?
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I have exactly the same problem but I think it's the meds. I rarely drink these days but I still go out, I just stick to sparkling water with ice & slice, it reminds me of a G&T! However, I have found wine the biggest culprit, if I do indulge I stick to a spirit and it's much better albeit I only have one or two. My new meeting places are coffee shops, if I arrange to meet a friend I often end up in Costa! 😀 x
Yep costa is mine too but even coffee I'm having in moderation. I have thought in the night that it is since I went on hydroxy. So thought vodka lime and soda could be an option I'll try if not I think my drinking days are over.
Just another bit of enjoyment these diseases have taken from me.
Well yes, but I've turned my attention to health & fitness, need something to make us feel good! I watch my diet, including alcohol, and go to the gym 3 times a week, best I've felt since diagnosed 3 yrs ago. Can't stop meds unfortunately but can help in other ways, it's just nice to feel good again 😀
I have the same problem when drinking wine, I am on hydroxychloroquine and wine gives me headaches and makes my hands swell. The only drink I can enjoy without any repercussions is a beer!
I've rung up the Rheumy help line! I'm burning up sweating now and feel dreadful tbh I've been ad for a long time and obviously a glass of wine just doesn't help. So hope I can get some help from the nurses if not then my gp.
Might just have to do trial and error with some drinks I like and see if I have the same problem
Yep, I have UCTD and take hydroxy and prednisilone. But I became intolerant of alcohol at least 10 years prior to developing auto-immune problems - after a glass of wine or 1/2 pint of beer, I would get nauseous.
Despite pining for it, I haven't had any alcohol for a couple of years until - coincidentally - last week, when I tried a glass of white wine. The first mouthful went - mmm, lovely....oh wait a minute...not so lovely now....urghh...take it away!
The main effect was to bring on one of my hot flushes. My cheeks were burning for hours. So the effect now is more immediate than before, but whether that's down to the meds or the condition, I don't know. Either way, it's back on the wagon for me!
Well it's nice to know I'm not the only one! I love a glass of wine but not the after effects so think I already know the answer. It's also made me realise that I need some additional treatment to get me sorted so fingers crossed I get somewhere
I read years ago that red wine is inflammatory and white wine too...but less so. Although I really enjoy red wine I avoid it most of the time as it definitely makes me ache more. Apparently some foods inflammatory to but as a veggie giving up tomatoes a lost cause and I have never experienced any obvious ill effects from them. 😃
I can totally relate to your post. Me too! I have always suffered from IBS type symptoms with my lupus and diarrhoea in particular. Very bad at times. I have found that if I go out for a meal with friends and have a few glasses of wine that I come home and spend the night on the loo, with diarrhoea and cramps etc. One night I was up until 4am on the loo. Then the whole of the next day was spent in bed sleeping. I realised that alcohol was making my IBS type stuff much worse. And now I am on 3g a day of MMF and that is even worse. I now have 1 glass of wine with a meal, if I am going out and that is it. The MMF does seem to control the diarrhoea better now but I still have to watch the amount of fruit and veg I eat, as over doing that makes me ill too. I chose to drive quite a lot.
My friends find my lupus hard to understand and I think that they think my alcohol avoidance is not necessary. But with the MMF and monthly blood tests for kidney and liver function etc, I just feel like I have poisoned myself if I drink more than 1 glass. I can go for weeks now without alcohol as I do not drink at home. I had guests last week and had 1 glass, it was large as poured by my husband, on the Monday night and I felt awful. When I looked at my face in the mirror my malar rash was burning up, bright red! I looked horrendous. So that puts me off even having one. I often put fizzy water or something into a wine glass, so people don't notice.
Lupus does effect your friendships in many ways. I don't think my friends understand the nature of it, i.e. that you have good spells and then flares. They don't get the intensity of those flares, because they don't see me, I hide at home in bed. They don't get the depression that comes with it either. I remember going out for a meal one night and someone asking me about how I was and I ended up crying, I hadn't wanted to, but then suddenly I realised that the whole group was silent and watching and listening to me, in shock and looking very uncomfortable indeed. I changed the subject and wiped my eyes. I have realised that I need to avoid that subject when out like that. If someone asks me, 1-to-1 I will answer, but best avoided in groups or when out etc. I do feel that my friendships have suffered. Even close friends don't understand. Compassion fatigue sets in very quickly.
Most of my friends are now over 40. We all have children of similar ages. Mine are 9, 11 & 13. So after years of nappies and disrupted sleep etc, you do begin to feel that you are getting some life back for yourself at this time. But of course my lupus was set off by the birth of my third child, so I haven't been myself for about 9 years. They are all getting their lives back on track etc. They live life at full speed, in every way. And I am definitely left behind. I can barely manage a pilates class once a week and a family walk to weekends. They are booked up socially for weeks, if not months in advance and I keep my weekends as free as possible as I never know when I am going to be up to doing anything.
So when I am not feeling well and a little depressed, I do feel that I don't have anything in common with them any more, which is very hard to handle. I am sure they would disagree and be upset if they knew how I really felt, but I feel a wedge is coming between us and that they only want the old me, pre-lupus and I don't think I'll ever be that person again. I definitely feel like I grieve the old me at times. I wish I could be that full of energy, half marathon running, capable, confident person again. Maybe if I get my medication right, I might be.
Gosh this is sounding very negative. Sorry. I just think it's normal to go through these stages with this illness. We are constantly learning what we can and cannot do. I cannot drink more than 1 small glass of wine, very often. I can't run any more. The gym takes too much out of me, etc.
Something I also noticed at Christmas was that when we went to an hour karaoke in town, the others were very drunk and I was sober. They didn't notice. I sang and had a little dance (very good spell of health) and no one noticed that I was sober, until the next day when I had no hangover and they all had memory issues, I didn't! So sometimes when the others are drinking, they don't notice me on the mocktails etc.
You will find a way of dealing with it all. Stay strong. And I hope you feel better very soon.
My very best wishes.
Wendy x
PS I've had to edit my reply, as I did this quickly this morning before I went out with my children and tonight I've realised that half of it never made sense! Sorry. x
I basically said all of that to my daughter this morning. I feel so isolated as I have nothing else going on in my life but my ill health and hospital appts. So struggle to make conversation after I've asked them all questions on there's life's which depresses me more especially when it's all gym talk and I struggle getting out of bed!
Not sure if it's my thyroid or lupus but my anxiety is quite high and I'm so paranoid it's crippling. At least I know it's not normal and I'm aware of it but I think that's what makes me more upset than anything. Maybe I just have too much time on my hands as I'm too sick to do much so my mind works overtime.
I'm having my lung tests today so worrying about that. But I hope Rheumy will call and give me some advice. If I go to my gp I think they'll just say I need to call my consultant. Add I'm just too tired to go anywhere right now x
Oh, I know! There's a Consultant, or GP appointment, or bloods, or an MRI - it's very busy being ill. I know what you mean about the anxiety and over thinking things too. How did your lung test go? And did your Rheumy call?
Rheumy nurse didn't call but did say on the answer machine 24-48 hours. So getting in with my gp first thing. Going to get an emergency appt as in Friday morning but it's a registrar and she'll be out her depth especially if I want steroids. My gp will probably still call my consultant. Lung test was ok nurse was lovely and patient as I get panicky as I already struggle breathing or having anything over my mouth nose. I'm also full of flu symptoms so struggling. I got the hang of it and all my tests matched. I only struggled with the gas they blew into my lungs that hurt. Fingers crossed it comes back ok. But she says it'll act as a guide now to monitor me. My chest pain and breathing could be anxiety I haven't a clue. The only thing I don't have is the skin rash. So hope it won't affect my organs as I think that sounds the most serious symptoms of lupus x
I get this and have stopped drinking now. I have the odd one drink every few months or so. It's horrible watching others drink thinking ooh that beer would be nice or a glass of wine. But I just know that it's not worth how it makes me feel. Which is exactly as you describe.
I do feel like I'm the outsider at times as everyone is giggling and having fun and I'm stuck in the corner not in on the funny joke as I'm sober.
I can't drink alcohol either. Haven't done so for 30 years or so now as consequences were unbearable.
Hi im similar feel rough as !!! next day wake up shivering made the mistake of having a glass of a really nice south african red wine friend brought back feel a chill pretty quickly next day ache
Hi, I am a coeliac and have Lupus and absolutely can't drink now. As you say, it's not worth it. I get a back tummy and just ache all over the following day. I'm also on Hydroxi but also had it before so don't think it's that - just another Lupus horrible and annoying thing!!!!
I can't test positive for coeliac as don't eat enough and there's no way I am to get a positive result when one meal makes my stomach bloat and feel bad for days. But my stomach is seriously playing up still even now so maybe something else is going on and the wine just added to it. I've been under some stress and worrying about my lung tests today. But know I need to take my diet in hand and get back to basics for now to find my triggers x
My GP is much more frank with me when chatting about my lupus symptoms and other illnesses. My Rheumy and various dermies have been aware of my bowel issues and never commented, just noted it down as they do. But before xmas I had to see my GP, as I had a particularly bad spell with diarrhoea and my piles were effected (sorry TMI!) My GP said to me you obviously have some sort of inflammatory bowel process going on, linked to your lupus. And I thought wow - why couldn't one of the Consultants come out and say that to me before? Like I said, since then the MMF appears to be controlling it better, although I'm still watching my fruit and veg. But for me diarrhoea is definitely a sign of a flare for me. Barnclown has posted an article about IBS type symptoms and inflammation today. Have you seen it?
My gp is lovely and sympathetic it's just getting in with him so now I just get an emergency appt if necessary! I'm usually constipated and take strong senakot once a week to keep things moving. But last few days my stomach is churning and aching and total opposite. So could be another indication of a flare for me too. I've found none of my consultants really tell me anything I just photo all my paperwork and google it when I get home haha
I've not seen any articles but know I need to cut out gluten as it is a similar protein to thyroid so my immune system attacks your stomach when we eat it. I also watch my dairy intake. So sticking with fish meat fruit and veg and good carbs get my meds right and hopefully I'll start feeling better x
I rarely drink at all now .Red wine is worse than white. Mixing with coke is far worse than other mixers. I don't drink anything now with caffine ie coffee, tea. I suffer from atrial fibrillation anyway as part of lupus, but the sweats, palpitations etc have got worse with alcohol. This may be partially due to drugs but I feel it is Lupus realted.
I had to give up red wine about 10 years ago, then white wine had to go soon after then beer about 3 years ago. Up until last year I could tolerate (on a "good" day) a weak g&t once in a while. But since Xmas day when I had 2 very weak g&t's and paid the price I haven't bothered since.
Fizzy water, ice and lemon or a tonic water, ice and lemon it is for me currently. 😢
A common question at health checks and the like is 'do you drink alcohol?' When I say 'no, it makes me ill ' it raises an eyebrow and once or twice a comment like 'oh, did you used to have a drink problem?!'
Well no actually, I didn't used to have a drink problem! I used to drink well within recommended healthy limits (well may be not in my student days 😜), and would thoroughly enjoy a glass of wine or two occasionally. Now I have a drink problem though, it's that I can't drink! Even one of just about anything makes me feel terrible really quickly. Unsteady gait, escalated joint and muscle pains, nausea etc....
I be been on hydroxy for >10yrs and AZ for 1, but this has been getting worse for three or four, and now I'm completely intolerant of alcoholic drinks ☹️. I haven't been able to work out why not. I get the same reaction if exposed to too much sunlight too!
I've just recalled my first Rheumy appt and she nodded when I said I couldn't tolerate alcohol and we then discussed my gluten issues. So think they must go hand in hand
if im out in the sun for long i get tanned really quick but skin goes scaley im not meant to have lupus! mind not anything according to them perfect health should be running atleast 3 marathons a day! i do have Raynauds with Fibro mind quite amusing that was at RLHIM got some homeopathic meds there after seeing them from what scribbled on paper to pharmacy looks like Fibro cant see it being foot n mouth? you know what it''s like in Quack scribble!(If the Germans had used Quack scribble they'd have won the war instead of enigma)said to my Quack what it said she said never thought was in doubt! changed her tune!
but my face feels burny/itchey days after being out and flakes in little pieces
I'm not on any meds but find most alcohol difficult to tolerate, and have done for years. I'm not sure if it's the suspected Lupus or just age. Spirits are easier though (vodka or whisky) and don't cause ill effects. And might I say there are alternatives to alcohol which can really help with the pain...ahem.
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