Aching legs

[Mozart52]

I’m new here. In May my skin specialists confirmed SCLE following a biopsy. I am having other tests querying SLE because I have other symptoms. One of them is badly aching legs that feel like they are burning hot and I find it difficult to walk up stairs. I have to hold on and pull myself up . I’m tormented with guilt thinking it’s me and is it due to my lack of exercise. I go out for a good walk and my legs feel good and few hours later they start aching and burning again and remain like this for days. It is not lactic acid build up from over doing it, the aching is different to that. If anyone has any tips I’d be grateful.

[Chris21]

Hi Mozart52, I get these symptoms but not very often, at the moment the rheumatologist is querying whether it’s neuropathy that’s causing it. I don’t have a solution but massaging my legs and a cool damp flannel/ blanket helps relieve it for a while as well as legs raised. I assume you have mentioned this to your consultant? What did he suggest?

Hope you get some relieve soon 🙂

[fiona14 in reply to Chris21]

Yes, I agree with Spotty-ewe. Cool wet clean flannel over your legs and keep repeating it until they feel a bit better I promise you, its such a relief! Doctors told me to elevate my legs so that your legs are positioned higher than your hips. Maybe with several pillows or cushions. I have had the same problems as you with very hot legs like a very bad sunburn and could feel the heat without actually touching them. Mine seems to have eased off a little except they still get very painful and sore But not so hot. I still elevate my legs when I remember especially in the evenings until I go to bed. You would need to try to balance your walking about with elevating your legs. I also used to use some emollient cream prescribed by my GP. This helps to cool down the heat and the redness of your legs along with elevating, but avoiding naked flames like your gas cooker if you have one, or bonfires. Its very inflammable. Think that's the word. I'm also taking paracetamol (I'm also on Pregabalin) which helps as well. Sorry I made this reply so long. I hope it helps. Best wishes Fiona.

[Spotty-ewe]

Hi Mozart. First of all a very warm welcome to our group.🤗 I’m so sorry to hear about your aching and burning legs. I’ve suffered with aching legs since I was a teenager with the result that I have to put them up whenever I sit down. The upside of that is that even at 66, and with both parents who suffered with various veins, I don’t have any so I’m grateful to my aching legs for that. 🤣 But I don’t have the burning sensation only on the soles of my feet and palms of my hands which is now under control with Pregabalin. Like many of us here I keep a symptoms diary and I recommend you do the same so you can report how often and for how long your symptoms occur when you see a specialist again. I doubt very much if your lack of exercise is responsible for your symptoms so put your mind at rest there. Definitely no need for feelings of guilt. But do report all your symptoms to your consultant. Wishing you the best of luck and do keep us informed how you get on. Hugs 🤗xx

[foxglove in reply to Spotty-ewe]

Would you be kind enoughto tell mehow much pregabalin you're takeing? I take 200 mg -in divided doses- for peripheral neuropathy - which helps . However I also get burning hands and feet in bed at night and was wondering if I needed to raise pregabalin dose? Thank you

[Spotty-ewe in reply to foxglove]

Hi Foxglove I also have peripheral neuropathy which is what the Pregabalin was prescribed for. However I’m only on 150 mg which was doubled from 75mg because that wasn’t working. My current dose does seem to have stopped the burning sensation when I’m in bed so I get to sleep quite quickly unless something is on my mind, but that’s another story. Mine is taken all in one dose at night time, about 8pm. My Rheumy told me to do this because my main problem was not being able to get to sleep. So would taking your 200mg at one time help? Might be worth asking your consultant. Take care. Xx

[foxglove in reply to Spotty-ewe]

Thank you so much for this helpful reply I'm taking the pregabalin in split doses on gp's advice, however ther's no reason really why I can't take in one go esp. as i find the daytime doses make me a bit "groggy" I take the100 mg dose at night so I think I'll try 100+ 50, then if that is tolerated add in the other 50 mg, or perhaps maybe the 150 at night will do!! My gp is helpful and understanding but I want to take care on this one!! Don't have a consultant am being treated soley by gp

Is your neuropthy pain controlled? look after yourself and be careful. Cheers

[Spotty-ewe in reply to foxglove]

I tolerated the the 150mg (from 75mg) quite quickly ie within a couple of days, and it has certainly stopped the burning feet and hands so that I can now get to sleep. BUT it does make me terribly constipated and I have to take prescribed laxatives which is annoying. Apart from the very occasional pins and needles in my lower legs and a creepy almost shivery feeling in the same areas, I haven’t suffered any pain as such. It might be worth speaking to your GP before altering your regime but if the daytime dose makes you groggy you have a good case for altering the time of that dose and adding it to your evening dose if he/she agrees. Good luck. Xx

[CavendishCool]

You are not alone, some nights the tops of my legs ache so much I could cry. My doctor said that's a classic sign of the type of Lupus I have, yay! I usually have a hot bath and take a couple of paracetamol, put a pillow or cushions under my knees and hope that the pains will subside enough for me to get to sleep. However, when I'm desperate, I do rub the muscular version of Voltarol on them, but I don't know whether I am supposed to because of the Hydroxychloroquine and Fluoextine I'm prescribed. I have my first 6 month check up since diagnosis next month and these were the questions I was going to ask my Consultant. That's about all I've got, I'm afraid. Namaste 🙏

[MusicalFurbaby]

Hi Mozart52 and welcome! Good on you for reaching out on this forum, it’s not always easy to reach out to strangers, but this is a lovely bunch of people who will try to help you if they can.

I get burning hot rashes on my hands, feet, knees and occasionally arms, but it sounds like what you get is far more painful than what mine is for me. Mine is not neurological because I recently underwent a full battery of neurological tests, which thankfully came back normal. So I would consider asking for a neurologist referral if you haven’t already. Any time you get tingling, numbness or burning pain, it could potentially be nerve-related.

I’m starting to think mine could be erythromelalgia (as suggested by the very helpful people on this forum!) but my GP has also postulated it could be CRPS (Complex Regional Pain Syndrome). The latter is a diagnosis of exclusion, so you would need to be tested for other possible causes first. But that would be a diagnosis for a neurologist to make.

I hope you find some relief at any rate, because it sounds like this is affecting your daily life quite badly. I don’t know how to get relief yet; I’ve just been started on Plaquenil to see if it helps with these and other symptoms. I’m glad walking gives you some relief, albeit brief. Some nights I’ve thought about focusing a fan on my legs because it feels like they’re roasting, so who knows, that might help! I only know they recommend against immersion in cold water or applying ice, as these can cause more damage. Good luck to you, and feel free to post here any time for support. 👍🌈

[Raven_claw]

I also have SCLE and suffer achy legs. Mainly feels deep in the muscles of my thighs. Not all the time. Usually when I’m feeling unwell and fatigued. Some days I can go about a normal day walk dogs and even use the gym and others I can barely leave the house. No pattern or obvious reason. There doesn’t seem to be much info out there for SCLE as I know mine isn’t just affecting my skin. GP is calling next week as she thinks maybe fibromyalgia too but I’m not so sure. Hope you can get some help for your pain.