Indescribable pain: I have a pain in my legs that I... - LUPUS UK


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Indescribable pain


I have a pain in my legs that I don’t know how to describe, I’ve never had this type of pain before and I’m struggling to do anything. I’ve got two children on their last day of school holidays and am unable to do anything exciting with them.

The pain seems to be muscular but it’s not like cramp or the pain you get when you use muscles you haven’t used for a while. It really is hard to explain and I have so much to do and don’t know how to do it. Sorry for the moan feeling stuck today and just wondered if anyone else has similar or knows what I’m trying to describe.


6 Replies

I have this in my arms and legs - difficult to explain. I rub in Deep Freeze a topical pain relief my Osteopath uses. They also make pain relief plasters I find a great help. Stick those on the affected areas and wait a few minutes and it should bring relief. They only have menthol etc in them and most chemists or supermarkets have them. Olbas Oil works well too but is smelly so I save that for home. Good luck.

Tinkerjack1912 in reply to Cas70

Thank-you. Anything is worth a try.


Hi Tinkerjack1912,

You may find some tips and information from our blog article helpful in managing the pain:


I get like a growing pain type pain in my legs or almost like the cold has got right deep into my legs or bones. It’s a weird kind of pain it’s not s pain pain but constant and the only thing I’ve found that relieves it is going to bed which is impossible when u have kids! Luckily I usually get it worse towards an evening so I can go to bed. I have to get my partner or me to run my legs to relieve it or have s warm bath a hot water bottle. But generally rubbing them for a good 20-30 mins. Nobody has ever said what it is it happens every 2-3 months or so but this month has happened 3 times already?? I’m wondering if it’s to do with my aps and maybe the blood flow is sluggish? I do have livedo reticularis on legs.

Dunno if urs is same but this is what I get, why do we all have such weird varied symptoms!!!!

Hidden in reply to Sara_A

This is a great description of the leg pain I often experience too. I also get livido but not APS as far as I’m aware. I think mine is a mixture of small vessel Vasculitis and small fibre neuropathy but it feels as if it’s in my bones.

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