Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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MamaWolf13 01/02/2015

So I am still waiting on the official diagnosis of Lupus but we keep having drops in temp and rain storms that turn into freezing rain. The drops in temp are killing me! My whole body hurts like I am being rolled in glass! I am only on Amitriptalyine for the fibro and no pain meds and my essential oils 'pain bombs' help but not much only sleep seems to work and I have a toddler who doesn't understand. Oh and my husband works.

Is this just the fibro or could it be the lupus too?

Also a friend who has lupus said she vapes for pain management, she uses low dose nicotine to do it. Does anyone else do this?

twinmomab 01/02/2015

I'm in the same boat as you so I would curious to see the replies. I have fibro and lupus and the weather is exactly the same here. My girls are 4 yrs old and I hurt all over. Today my head is throbbing so bad I only want to sleep.

I take Lyrica for the pain and it helps curb it so I can walk. Do you like Amitriptalyine?

I haven't heard of vaping for pain. Interesting.

MamaWolf13 01/02/2015

I do like the Amitriptalyine. It helps me sleep. Before my brain would focus on my day or bills or pain and i would dream about them. Now its 8 peaceful hours of perfect sleep! I love my Amitrip or my crazy pill as my hubby calls it, since its an anti-psychotic. I haven't been given any pain meds yet but I am going to ask for something to help with the pain during the day. I am having a head ache that is making me so tired today too even my jaw hurts!

nanny1611 01/02/2015

I have lupus, myositis, and osteoporosis, which meant joint, muscle, and bone pain 24/7. The things that have helped me most are:
1) Gluten-free diet
2) Avoiding ALL artificial sweeteners and most refined sugar
3) Vitamin D3 (plus cal-mag, vitamin k2, and strontium citrate for the osteo)
4) Supplements, especially InflamericZyme (aka, Joint Comfort) and Lauricidin (recommended by my doctor, an M.D. who believes in integrative medicine)

twinmomab 01/02/2015

Thanks Mamawolf and nanny. I need to try something different for sure. My vision is so blurry today and Mamawolf, my jaw and face hurt too!

Here's to hoping we get some relief!

MamaWolf13 01/02/2015

Update - Twinmomab, The oils I used took away the headache and face and jaw pain. I used a combo of wild orange, grapefruit, and peppermint on my wrists and about 20 minutes later byebye pain. But It seems I have traded one pain for another. My upper back between my shoulder blades is killing me now.

Have you thought about trying essential oils?

twinmomab 01/12/2015

I haven't tried essential oils but I am going to get the ones you have mentioned for a headache. Thanks

MToennis 01/12/2015

There is a guy on the Mixed Connective Tissue site that vapes for pain. But he uses marijuana.
Mary Ann

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