LUPUS UK
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Lupus Flare after 15 years of remission

Hi, so I was diagnosed with sle when I was 8, and its has now been about 22 years. Lupus first attacked my kidneys very early and I recieved a kidney transplant at 20. Since then I've been ok as far as my lupus goes but since last year I've been experiencing what I think are lupus flares but it's been over 15 years since my last flare and don't know if I'm flaring or something else is going on. With all my health issues I never know. Just wondering if anyone here has been in remission for longer than 15 years and then started experiencing lupus symptoms?? I've been in a lot of pain in my side and back on top of random rashes and serious fatigue!! My right arm has been been going numb from lack of blood going to it, and my mood has been very agitated. I don't know what to do since it's been so long since I've had a flare and kinda worried why I'm flaring after so long??? If anyone has some insight I would be glad to hear from you!!

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Have you had a busy or stressful time recently? Or being skipping too many meals and grabbing snacks on the go. Deviating from a properly nutritionally balanced diet? Eating/drinking too many sugary or inflammatory foods or drinks?

I personally think all of these things play a huge part in starting or suppressing flares.

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I feel like my life hasn't changed much, just the regular hustle and bustle of life, but I feel like as I get older my body can't take as much as it used to, I guess I just need to learn when to stop. Also I'm in the restaurant industry, which is stressful in itself!! Think its time for a change in my job!!

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I was also in remission for over 12 years but experienced a big flair in February. I believe mine was definitely stress related. It’s now managed but through a host of medications. Definitely review recents events/lifestyle for clues and listen to what your body is telling you. Best of luck + good health.

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Thank you so much, yes I just made a big a move and think I am more stressed than I care to admit. I just need to listen to my body and slow down!!

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Hi Kay, have you been to see a GP about your recent symptoms, if not I really would advise you do, those symptoms are IMO a red flag and need addressing. Flares can occur at any time, and with varying severity, at the very least blood work should high on the list of must do's by your GP.

Good luck.

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I've seen my transplant doctors since that's the only doctors I've had to deal with for so long, but my kidney is just fine. Which really has me convinced I'm in the middle of a flare, I guess I just don't want to admit it. I will be making an appt with a GP asap. Thank you for your feedback, I really appreciate it!!

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Go see your doctor maybe consultant. Lupus lies dominant for upto 10 years. Even if its only with one concern or ten concerns there are so many dos and donts about lupus. Thankfully there is more knowledge on it now than there was years ago. Good luck

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Yes very true, when I was first diagnosed in 1996, they didn't have very much info at all. I'm just glad I've found a place to share my story and talk to others who have gone through or are currently going through my struggles with the illness!! Just sick and tired of being sick and tired!!!

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I think stress will definitely do it. I got my diagnosis following an extremely stressful period.

One thing I have learned since is that stress depletes nutrients in the body and leaves it open to attack by things we might normally shrug off.

You might find some present rellief in medications so the gp is a good resource. But you will have to address the stress element in some way. I know its easier said than done. But to not do so you will likely get even more run down.

I relied totally on allopathic medicine for years as I believed it was my best option. And for some it may be.

But after following these boards for a while and reading patient stories of difficulties with care and potential expulsion from consultants lists I began to look for other safety nets.

When I started reading and researching I came across a multitude of information sources that encouraged me to look more closely at my diet and at EVERYTHING I put in my mouth.

Since I have been eating much more fresh food, I believe I have seen benefits. Fresh food often takes extra time to prepare so you have to make readjustments. But there is a much greater level of vitamins and nutrients in fresh food as it is closer to the living growing form.

Salads are a good easy way forward. But they have to be much more than a bit of iceberg lettuce (no nutrient content), tomato and cucumber. Try sprinkling some seeds (trail mix) or nuts on top (vitamin e). Nutritional yeast (b vitamins). Sprouts - you can start with cress from the supermarket. Try to have a rainbow plate, that's food of many different colours. Different nutrients do seem to occur in different coloured foods.

Whether vegan or not you can get ideas for how to expand your plant based meal ideas from vegan sites.

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Thank you so much, you are definitely right about changing my diet, I work as a waitress and I am constantly eating on the go, and eating lots of convient foods. I love to cook, I just need to start buying more healthy!! As far as the stress, my mom and I are going to try meditating, and also joining a yoga class. I need to channel my stress into more productive activities!!! I'm really glad I joined this blog, it really helps to talk to others who understand.

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I always thought I was eating well and assumed that I was unlucky to have all my various ailments.

But after being prompted into further reading and research and finding so much info pointing to dietary approaches as being beneficial I decided to give it a try.

It was easier as my partner was willing to embrace similar changes as he has his own health issues.

We now eat little in the way of carbs. Lots of fresh fruit and veg. Olive oil, coconut oil or butter for fats. We have reduced our meat intake but eat more fish instead. We do eat some dairy.

We try not to buy processed foods as if it's not available in the house we can't be tempted as easily. We do buy dark chocolate with a high cocoa content. If we are out in the car we try to always have some nuts or fruit with us for snacks.

It's too easy to be tempted to eat things that are lacking in nutrients without pre planning.

That also includes when we have to go for hospital appointments as the shops there are crammed full of junk.

Since we have made changes we have both felt benefits. I'm not saying we are cured but I feel it's been a step in the right direction.

When with relatives the mantra seems to be... well it doesn't hurt to have a day off.

Well, since we have been eating more fresh foods we really notice a difference when we deviate. We have both noticed this independently.

And if you fill up on something that's lacking in nutrients then you are forever playing catch up.

I don't want to sound like a health evangelist but this is what has worked for us and may be useful information for others.

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