This disease...

Has anyone else had a temporary remission from symptoms? I've had 7 days feeling well and like the old me, only for it all to come back with a vengeance 😫. How does that happen? I've mostly felt unwell since December with increasing symptoms, it's like I've been granted a 7 day holiday and now it's over. I suppose I should be grateful for it but in a way it reminds me of what life used to be like and how very different it is now 😔

[Hidden]

Hi yes I have indeed have the symptoms lift and felt well then bang it was back as bad as ever just like what’s happened to you. For me it’s linked to what I eat and drink if I eat like a normal person am very unwell if I go on a organic wheat and gluten free plus dairy free vegan diet with lots of herbs then I start to feel really well as soon as I start to come off the diet I am back to square one. I find I am allergic to everything and have just ordered a ton of herbs vitamins and supplements as am about to go back onto the diet within the next few days. It’s basically only drinking pure coconut water, fresh smoothies or mineral water. A steam and sauna day each and every day followed by what I call my one food diet. I can only manage one food such as a pear,apple, carrot etc. As many as possible to get as much nutrients into me. Nothing in a tin or a packet etc. It’s the only thing that works for me and as I am about to have an other operation with yet another biopsy I thought I had better start back on the diet. Try keeping a food diary to see if it’s linking in with food. You will be surprised to see how it all links in with your symptoms. It may or not help but if you try it and it works that’s good. Lupus is so unpredictable but if you find out what’s helping or triggering your symptoms let us all know. I have you start to feel much better soon. Take care. Elena.

[Hidden in reply to Hidden]

Hi yes I didn't think about food, I have been straying from my usual healthy eating (I don't eat meat, mostly fish and vegetables prepared from scratch) and eating more sugary things which I've heard can cause inflammation. I tend to eat more sugar before my menstrual cycle which has been changing over the last 18 months, I think I'm heading into perimenopause and have noticed lots of changes, hormones, weight fluctuations etc. Maybe that could be contributing? I did drive on Monday and although I was protected, it was sunny, about 20 minutes each way. I am finding it unpredictable but like you say maybe being more aware of triggers would be helpful so I'll keep a diary and see if I can spot anything in future! Thanks 😊

[overnighthearingloss]

Was going to say similar to jeromicus888.

It's something really hard to grasp without testing it out for yourself. I have eaten wheat products and dairy all my life. I realised some years back that I would get more mucus if I had too much dairy but continued never the less. More recently I have also noticed that wheat products also cause a reaction with me.

I cant say I have excluded either from my diet totally but when I have included them in greater percentage terms of my whole food intake I often get a bad reaction.

If you come to notice this yourself it will make you tend to err for the foods that dont cause a bad reaction more often.

[Hidden in reply to overnighthearingloss]

Hi good advice 😊. I have been thinking about dairy for a while now but struggling to find a suitable milk alternative, especially for hot drinks! I've done the low fodmap diet before for IBS and excluded gluten, dairy etc but these didn't cause a reaction when reintroduced. I do wonder about dairy and mucus, I think it has that effect on me. I'll try and keep a diary and see if I notice a pattern. Thanks.

[overnighthearingloss in reply to Hidden]

I'm just having a cup of tea with oat milk. I think it's okay. I can also have almond milk in tea but not coffee. Oat milk is a better choice for coffee.

[Hidden in reply to overnighthearingloss]

Thanks I will give it a try.

[andreea_valerie]

Hello! Yes, with our disease, doctors say it is normal that the flares come and go. You need to take care of yourself and avoid stress or anything that may cause inflammation. Stay strong. You will be in remission for more than 7 days at some point. I used to feel terrible, been on IV therapy for months, just so I could get up from my cozy bed and do my every day activities. For over a year now, I am back to the person I used to be before I was diagnosed (except for occasional fatigue, weakness, anemia or mild anxiety). I am forever grateful for this, so I encourage you to be positive, things are going to get better. You’ll see. Take care. 🙏🏻😊

[Hidden in reply to andreea_valerie]

Hi andreea_valerie and thank you for your positive reply 😊. I'm glad you are feeling better, it gives me hope that it won't always be bad. I'm slowly learning how to manage this disease and the help from everyone on here is invaluable, so much kindness and support. I hope you continue to feel well. Best wishes.

[PMRpro]

I think it is something that happens quite a lot in most a/i disease. The actual underlying a/i cause of the symptoms doesn't always go along at the same speed but varies in activity. On a really good day the activity may be low and so you feel less unwell - and it may be due to you having worked out the best management for YOUR disease. Then you splurge on things that don't help you and it all comes falling down.

I often used to recommend a blog called Despite Lupus - Sara Gorman does well as long as she sticks to her regimen of a nap after lunch. She may feel great and miss it one day - if she does that more than once she has a flare, no other changes required. She has written a book as well as her blog all about living better,

[Hidden]

Hi thanks that's really helpful. I sometimes find I need a nap around 3pm and this really helps. On Monday and yesterday I did have that feeling but foolishly pushed through, maybe that had an effect. It's only now I'm talking to others I can see potential reasons for flare! Will try to listen to my body in future and not overdo it. I'll have look at the book, thanks 😊

[cathie]

Remission is an odd thing. I've had short periods of well being like this, the only problem being that I had a consultant who didn't understand the meaning of remission and took me off all my medications. I suppose the way to react is to enjoy it when it. happens and as others have said, note the context in case there's things you can build on. Apologies though for gate crashing - I've got RA rather than lupus although some drs have wondered in the past.

[Hidden in reply to cathie]

Hi cathie nice to hear from you. No apology necessary, I'm grateful for all opinions and help and your RA remission experience sounds similar. What you say about enjoying it is very true, I appreciated it every day but in the back of my mind I did keep thinking is this going to come back or has it gone?! Silly I know but I was so relieved to feel normal and symptom free. Oh well I'll see it as a positive experience and try to figure out what, if anything caused it to flare again. This disease has me baffled that's for sure! Hope you stay well. Thanks 😊

[cathie in reply to Hidden]

I absolutely agree with you. Its good to be able to do things which previously might have been a huge challenge. One thing I do (but appreciate its different with RA) is to try to use the periods of remission to get out more, a bit more exercise, but not to overdo things. I imagine there's similar things which can be done with lupus, but don't really know enough to think much.

[Hidden in reply to cathie]

Yes you're right. I had a steroid injection in February which improved my symptoms for a 6 to 8 week period, during this time I started driving again after a year (I suffered anxiety and panic attacks brought on by ill health, stress and worry). Now if I have a better day I make sure I keep up with it because it's given me some confidence and independence back in my life. If this disease has taught me anything, it's definitely to appreciate the good days and make the most of them.

[LupieMani]

Same here. Had a great week two weeks ago and now in pain constantly. I try to think of it in terms of cartoon illustrations - it's like a war. The disease sees that it's winning and relaxes its grip. You have a few good days and the little devils look at you and go 'what?' and they call in reinforcements to just batter you something good!

Feel better soon xx

[Hidden in reply to LupieMani]

What a great analogy 😂 thank you x