Any advice

[chandlermandy]

Got the start of a flare....legs feel as if they can't hold my weight, rash on my face and of course our old friend fatigue has decided to join the party! On hydroxychloroquine, resting and taken ibuprofen. Any other suggestions of things I could do or have would be appreciated .

[Calafia]

Hi Chandler,

I didn't have rash, but fatigue was extensive. I'm on plaquenil and that helped with pain, but what helped me the most was eating foods that don't increase inflammation. I had to completely change how was eating (more simple meats and veggies, no preservatives, no processed sugar and minimal natural sugar) and noticed a very slight improvement in the condition of my hands/joints with in 48 hours. Now I have been eating this way for 1.5 years (it's hard to change but worth it), and have been able to reduce my plaquenil, significant energy increase, and feel much better. I can recommend a book that helped me figure out what to eat; if interested, let me know.

All the best,

Calafia

[Kellyleg in reply to Calafia]

Hi Calafia, Can you let me know what the book is called? Thanks,

[Calafia in reply to Kellyleg]

Hi Kelly, The book that I read that explains some of the science behind food is called Wheat Belly by William David, MD. Even though it has wheat in the title, it is about eliminating much more than wheat. Gluten free (which is made with rice, tapioca, potato) still causes inflammation. I don't know enough about the Paleo way of eating, to contrast the two, but I think it is very similar.

In the book is a list of "eat this often", "eat this rarely", and "stop eating this" that helped me get started because I could not figure out how to eat. Yes, things like junk food are obviously not good for you, but I would not feel well after I had an innocent glass of juice. Turns out that is so much sugar that many people's bodies really can't handle it even though its natural sugar.

It has a few recipes, but I didn't buy this book because I wasn't optimistic that it would help me. LOL. I did eventually buy the recipe book (Wheat Belly Cookbook) but I think if you have the list of what not to eat, you can find plenty of free recipes on the internet.

As I mentioned above, I noticed a slight improvement w/in 48 hours (my hands burn badly when I'm not doing well). It did take several months for a big change in the way I felt (especially the constant exhaustion) and it was gradual. Now I will occasionally have a store bought chocolate bar packed with sugar and preservatives and I barely notice it with the hurting joints or burning hands, but at first I had to really cut all of this stuff out because I would flare back up within a few hours.

Fingers crossed that you find something that works for you!

Calafia

[Dev2014 in reply to Calafia]

Hiya can you tell me the name of the book please my fatigue is effecting every part of my life!

Cheers dev

[Calafia in reply to Dev2014]

Hi, the fatigue is awful. Trying eliminating inflammatory foods. Wheat Belly by William David, MD will get you started on what to eat, what to rarely eat, and what to never eat. Other books or nutritionists may fine tune this better for you, but that will get you off to a great start. I have no affiliation with this book or author; just my honest experience of what helped me. All the best, Calafia

[misty14]

Hi Chandlermandy

If your flare symptoms don't improve especially your legs can steroids be introduced?. They act quickly and are very effective. Worth asking your Consultant. Hope you feel better soon.X

[Kellyleg]

Hi Chandler

I know what you mean, the thing I find helps me recover quickly is sleep.... the last flare I had i slept for 2 days solid, and when I finally woke up I felt a little more human... rest as much as you can! I personally find this really hard, but the long term effects are much worse! listen to your body.... hope you feel better soon! x

[Carcrashgal]

Hi, Calafia, I'd like to know the book title as well, please. Chandler, except for the rash, you could be describing how I feel right now. The legs thing is awful, isn't it? I never know how to explain it to people: when you get to the stage where you dread taking the next step in case you collapse . . . the soles of my feet send jagged lightning bolts of pain shooting up as well, and I cannot find a pair of shoes that *stay* comfortable for love nor money. So what's the treatment? I'd assumed it's just one of the symptoms we have to live with, but this is worse than usual and if there is something I can take, I think I'd like to explore that option . . . I confess to being a little worried, as I'm also suffering from depression and that's not happened to me before. I've used ami for pain before now, but I imagine that's what they'll give me if I admit to this. Trouble is, it just knocks me out - as if the lupus fatigue isn't enough to deal with! On the other hand, I'm going on holiday next week, so I think I'll see how I get through that, then see the doc when I get back . . . Sorry for rambling!

[chandlermandy]

Thank you all for the advice.