Periodically I suffer dreadfully with very tender thighs, tops of my arms and the back of my neck and glands. It's not constant, it seems to flare up every few weeks. It's almost like I have huge bruises and my skin hurts to touch like when you have flu. (Only there are no bruises) I find myself walking a certain way to avoid jiggling the muscles in my thighs and bottom and it wakes me at night when I roll over.
Does anyone know whether this is maybe a fibromyalgia symptom or could it just be the lupus? My vasculitis doctor didn't understand what I was explaining.
A friend said that it sounded like nerve pain and that I should ask my doctor about pregabalin? I can't take anti inflammatories because of my kidney involvement, so I stick with my amitriptaline and paracetamol for the pain.
I don't want to make a big fuss....when I told the doc that I have pain in all (!?!) my hair follicles sometimes he looked at me like I was nuts!!
This is sooo normal for us lupus people and trust me I thought I was nuts too. I have recently came across the actual name for it on the internet, it's call allodynia. It's kind of like a secondary feature when you have any kind of painful condition, like lupus and flibromyalgia. Trust me I get it, I asked my rhuemy and she just looked at me like I was crazy and I just kind of assumed maybe it was a nerve thing until I came across allodynia by accident on pinterest of all places. There is a reason why but a bunch of big words and stuff so just google it and check it out instead of me trying to explain it lol. I am on Effexor though(not because of the allodynia) and have noticed it doesn't happen as frequent when I found out it was used to help treat it.
Though i'm no doctor but this is from my personal experience.
What a relief. I did sleep last night (my precious amitryptaline!) and paracetamols kept the pain at bay. My 14 year old had a migraine and my pain just got worse and worse from all the trips upstairs!
So this pain is more a nerve issue than actual pain? Does this mean that lupus is attacking my nerves? Or is it just a side symptom? (Should I worry?!)
I also have the painful skin, like you said, it feels like having the flu. Some days I can't touch my skin at all, clothes or even the bed sheets hurt.
My rheumy explained it as tissue pain, the lupus attacking the tissues, right under the skin.
I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).