Do flares ever completely go away?

[Minnskimoo]

Hi.

I am still here in autoimmune/Lupus limbo and awaiting a follow up consultation with the rheumatologist. 🙆🏼

For the past 11 months I have had many awful, debilitating symptoms, rashes, ulcers , pins and needles- to name a few.

The unpleasant spots and red patches of skin I have had for the duration are now subsiding, thanks to a prescribed steroid cream. The red patches around my eyes have also now completely cleared up too. And, dare I say, I have not had a mouthful of ulcers for the past two weeks (they were occurring in succession, one after the other). However, that said, I appear to have acquired different symptoms in that, after eating a meal I can hardly stay awake, or even upright. It's almost like my food hits my digestive system and 'wham' I am just about done in. I try not to sit down now after eating - and to keep myself moving to try and 'shake off' this horrid feeling. Alongside that, on waking in the morning I feel like I have a huge hangover and my eyes take some adjusting to the daylight. I suppose everyone is different and symptoms vary.

I guess what I am trying to say is, does anyone dare to even declare they feel a little better and that their 'flare' has died down, therefore, leading to some improvement in health for a short while at least? Or, are they just hanging around on the peripheries to give you a wake up call for becoming a tad complacent? 😏

I was beginning to think I had turned a corner but it seems to have been short lived.

Any input gratefully received. 👍🏻

x

[Treetop33]

Sounds awful. As far as I am aware (just from my own experience) Lupus seems to mess with your digestive system along with everything else (for example, I had a seed obsession at one point which seemed to flay my colon...I guess it was inflamed). So I went Paleo/AIP. Seems to help with digestion at least, but not my social life.... There are other approaches e.g. keeping track of foods that seem to aggravate symptoms and cutting them out. Or just going gluten free. Seeing a qualified nutritionist might be useful.

I am getting the strong impression from this site that flares come and go, even on meds. There are lots of lifestyle triggers. I've spend a lot of time since diagnosis trying to track down what I've done to myself, and stop doing it, if you know what I mean. I feel a lot better than I did 4 months ago though.

The tiredness never seems to abate....I guess I try and work around it more :(.

[Minnskimoo]

Thank you Treetop33.👌🏻

I am going to mention this at my next visit to the rheumatologist. Perhaps a consultation with a nutritionist would be of some help.👍🏻 I certainly have nothing to lose. I can't seem to pinpoint it to any particular type of food up to now. I am still consuming food that contains gluten. My problem with some of my diet is that many fruits and salad items in their 'raw' state cause my mouth to tingle and encourage the development of mouth ulcers and my gums become puffy and inflamed, therefore I don't eat them as I used to. Grapes made the skin peel off the roof of my mouth. That was quite worrying. Vegetables are fine and I eat plenty most days.

Since being unwell, my diet seems to have limited me to what I can and cannot eat without some kind of reaction. I never used to have a problem with anything up until about 5 years ago! Perhaps this it- the vicious circle. Be damned if I do - Be damned if I dont! 🙆🏼

It' s a job to say the least! !

I am pleased that you have found some sort of a solution that has given you relief. Good to hear that there are ways of working around the situation which seems to have helped you a littke at least.

Much appreciate your reply.

Cheers. S x

[Treetop33 in reply to Minnskimoo]

I know exactly what you mean. Some people have really bad reactions to fruit and I got that tongue itching thing with figs the other day, and vegetable oil makes my joints ache more. Needless to say I desisted.

I didn't used to have reactions to anything. Now I react to pollen, mould, pollution, chemicals, food additives and lots of foodstuffs. It's possibly the Lupus??

I've said this elsewhere but I found the Paleo Approach by Sarah Ballantyne an excellent read on autoimmune diseases and lifestyle. Might be a good place to start.

[Minnskimoo in reply to Treetop33]

Thank you so much! Anything is worth a try!

As you mentioned previously, socialising is difficult. I was once able to manage a glass or two of red wine or perhaps a G & T. No chance these days. I feel like I have a hangover without any alcohol passing my lips. Hey ho. I imagine there are people with far worse to deal with.

Eating is a necessity, therefore I could do to improve on the variety in my diet. I miss delicious salads and dressings. And I absolutely adore figs too ( I have a fig tree in my garden) alas, I can no longer tolerate those either. 😏

I have to start somewhere and your suggestion seems to be a good place to begin. 👍🏻

Cheers.

S x

[Treetop33 in reply to Minnskimoo]

She's done a AIP cook book too - total life saver!

[Minnskimoo in reply to Treetop33]

Yes!

On it now Treetop33!

x

👏🏼