Hi 
Does anyone always have sore achy legs? climbing the stairs makes them so sore. I feel the only way to relieve the pain is by sitting on my legs or applying pressure... I've mentioned this to my rheumy many times but they don't seem to have any answers. The shortest of walks can trigger the pain.
Thank you for any help/advice 😊
I. x
I have a lot of pain in my legs some days. I have a hard time walking a few minutes when they hurt. Pain medicine sometimes helps some but I still feel pain so have to just lay in bed and do very little walking on those days. It doesn't help to try to stretch and move, just makes the pain worse.
Thank you for replying and I'm sorry to hear that you are also going through this pain. I hope you feel better soon. My dr said to me I'm having a flare of my lupus hence the pain but there is nothing they can give me for the pain.
I hope you find something to relieve your pain.
Dear Imzi,
So sorry to hear of your achy and sore legs, I also suffer from this but it extends to my whole body, I have tried using pain medication which sometimes works, but find that it usually subsides of its own accord. Unfortunately I don't really have a solution for you, but understand and can empathise with your pain.
All the best.
My leg muscles ache sometimes but they're not as bad as they were before the lupus diagnosis and treatment
Used to take me all my time to get upstairs or climb the many hills we have where I live. It got better for a while then started again, and when I mentioned it to the rheumatologist I was seeing then she suggested a lack of vitD...she did a blood test and sure enough it was low. My body doesnt make vitD any more
I was given oil capsules over a period of several weeks, had to go to the hospital each time to get the doses and once they were done she prescribed Adcal. I take 4 a day and will need them for the rest of my life. It did the trick
I'd reached a stage where I couldnt even hold my arms up to brush my hair it was so bad, or go upstairs without gasping for breath. I found out I'm asthmatic as well so I have sprays and am feeling much, much better. I have to pace myself which hasnt come easily but I can nip up and down stairs like I used to might be worth checking your vitamin levels out
My vit d is low however I have been taking tablets for it for over a year now and don't miss a dose, I don't feel taking the tablets now make much of a difference, I will get my vitamin levels checked in case I need to increase my dose.
I'm sorry to hear you struggled so much with the pain. Glad to hear your feeling better than before. Thank you so much for replying I really appreciate it, will defo get my levels checked
I. x
Hi imzi ,
We published a blog article about pain management not that long ago. If you haven't seen it, you may find it helpful. You can read it at lupusuk.org.uk/pain-managem...
Hi, I have had a look at this before but will read it again. Thank you
I too have horrendous leg pain and is only relieved by very hot Epsom baths,hot water bottles or a weight on top of my legs - sounds bizarre I don't know why the weight works but it helps - none take the pain away all together just numb it , if I take extra morphine when I'm desperate that helps but I don't like taking it too often because I am totally zonked out ! My Rheumy too looked at me as if I was daft and couldn't suggest anything - I have suffered with leg ache for many years even before I was diagnosed - so I too will be interested to see if anyone has any magic answers - best wishes to you x
Sorry to hear that you suffer form pains too.
That's just like me! Weight seems to help with the pain. I'm 24 so I feel lazy when I struggle to walk a short distance. Hopefully someone has answers for us both.
Thank you for replying, wishing you good health
I. x
I have severe pain in my legs causing difficulty walking and climbing stairs I have lupus and vasculitis so the rheumy said that is what is causing it
Hello. Yes, I get lower leg pain. This has been caused by my varicose veins at times, when I've had a long day on my feet etc but interestingly even my VV pain has been much better since I have been on lupus medication. Other times I am not sure what the leg pain is. It can feel like a "deep in my bones" aching. Is that how yours feels? I wonder if this is lupus related? Or more recently, after viewing one of the lupus information day talks by a lupus doctor, if an indication of osteoporosis or osteopenia - apparently people with SLE should have DEXA scans to check for these conditions but I've never been offered one. I have added it to my "must discuss" list for my future appointments. Although that list never gets any shorter - as you cross something off of it, you add something to the bottom and sometimes the priorities change etc. I do go to a pilates class once a week and have been told 10-15 minutes of gentle exercise every morning is good for improving my energy levels and I guess all movement helps our bodies, circulation and lymphatic system etc. But I am not very agile or fit. I cannot do anything more strenuous as it hurts my hips (OA). So weight may be an issue for me too. I will be following your post with interest. Wendy
Yes that's exactly how my pain feels and no one seems to have an answer or understand what the pain I am describing is! Oh I never knew this just another thing to add on top of everything. I tried Pilates once a week but it was causing me pains in my ankles so I have had to stop but I'm glad it is helping you in some way. It's difficult to be energetic with lupus the condition is draining itself never mind doing daily tasks!
I hope you find a solution to your pain.
I. X
Energetic 😂 I seriously miss those days. The only time I feel as if I can jump out of bed in the mornings with a spring in my step, is the 3 brief occasions I've been on steroids. Much more of a plodder these days. 😩 I'm going to try to find that link for you to watch. All of the talks were very informative. Are you looked after by a local Rheumy/hospital, or lupus UK recommended Rheumy or do you attend a Lupus Centre of Excellence? Wendy
I feel your pain!!! So glad I have someone who understands the daily struggles 🙈 I have been off from work for a week due to my health and all I've done is laze about in bed 🙄 I have never been like this! Thank you so much for the link I will defo have a listen. Yeah I attend a rheumy clinic every 3/6 months x
lupusuk.org.uk/hampshire-lu...
It was the Dr Neil Buchanan talk. Worth watching. It's so difficult to cope with stuff, when your doctors don't seem to get it themselves. I know what that is like. Best wishes.
Yes I usually soak in a hot bath and then use icy hot cream
Hello Everyone,
I live in very hot & sunny Arizona. I've always had intense lower leg aching, like deep in the bone. I only just had my 2nd Lupus flare last November after flying to Philadelphia for Thanksgiving with family. I was already feeling weak and tired before I got there. They were having a bitter cold bought of weather along with a freezing wind storm the day I arrived.
My sister and her family are used to the cold and only kept their heat at 60° Fahrenheit. I thought I was gonna die!! I never ached so badly in my life. I kept turning the heat up at night, but someone would turn it back down. I was already sleeping too much and that got worse there. I couldn't get out of bed until the sun had warmed the house around 2pm.
Then the nightmare of ongoing pain continued when I got back to Arizona and lasted until about 10 days ago now that the temps are well above 100°. I know you folks in the UK just can't get to the type of heat I have here. I literally magically improved overnight back to normal, and I hadn't done anything to help myself, like going outside to roast in the sun.
It's weird because the sun was giving me rashes and infections in the Spring. I don't know if the types of UV rays change or what. I had been going outside only once or twice a week since January for Dr's appts. No medications were helping much for any of my pains. I can only think that better UV rays were hitting me through the car windows on trips to the Drs recently. I wish everyone could experience the change I did. But maybe a flare-up had just ended abruptly after 7 months.
Here is my advice for lower leg aching. I've had it a long time and in my 20s began wearing men's sweat socks or exercise socks. They go all the way up to the knee and tightly grip the leg. This helps me tremendously!!!! There are also those special medical socks, can't think of the name. They work well too but I like the sweat socks better. Please be careful to not keep them on all the time and suffocate your skin or mess up blood circulation. In fact, you may want to ask your doctor. But if your in so much leg pain, I think it would be Ok to try tight socks before waiting to talk to your doctor.
Best Wishes
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