Hi all - I was diagnosed with Lupus SLE earlier this year. Just another painful night woken by this restless leg(?) symptom. Had it for decades but sometimes it's much worse than others. Read a posting on hear from 5yrs ago which was helpful. It mentioned quinine (I do drink the odd G&T and this doesn't seem to help - ie the quinine in the tonic!) and also some other drugs - amitryrptaline (?). Just wondered if any of you have found any cures? It's so bad, feels like my feet and legs are going to explode.. I put them outside the duvet which helps a little. Oh and I had about 5 bouts of very bad cramp as well last night. I get it in the evening too - in the whole foot and also up the front of my shin. Excruciating and frightening. I've got to have my (v bad) bunions done soon and wondering what the hell I'll do as you can't put your foot on the floor for at least the first week so how will I get rid of the cramp as walking around is the only thing that gets rid. Hmmm... any advice peeps? Thanks so much. D
Severe pain in feet and lower leg at night. Is it... - LUPUS UK
Severe pain in feet and lower leg at night. Is it restless leg??
Hi DJK99.
So sorry to hear about your horrendous pain and lack of sleep. Unfortunately I am no expert but I also have restless leg syndrome every other night and been dealing with cramp legs throughout my life. Meds wise, I take nortryptaline to help me sleep. I also put a pillow under my legs (behind knee) to elevate them slightly which helps me a bit. I have tried walking around but that doesn't work for me. The key for me is exhaustion(which isn't difficult to become) keep mind occupied until I'm dozing by reading/soduko/tv.
Sorry I'm not much help. Just wanted to say you are not alone and this site is fantastic at helping.
I hope you find some way to ease your pain soon.
Sending healthy thoughts x
Hi,
I don’t have restless leg syndrome, however I did have painful shins & feet which made my legs restless they were worse when I went to bed at night, even t weight of a sheet caused so much pain. A pillow did help between the legs.
This was one of my symptoms when I was diagnosed with Lupus and Rheumatoid Arthritis last November, I was then put on hydroxychloroquine Sulphate, methotrexate and aspirin, I continued to take the pregabalin as well for nerve pain. It took at least 3 months for the meds to begin to kick in and a further increase of methotrexate, which I now take 4 a week.
It took about 6 months before I felt more or less pain free at night, I have now stopped taken the pregabalin.
I’m not sure if my post will help you, if your current meds are not working I would keep pestering your doctor until you get the help you need.
Good luck.
Thanks JHPC - I'm on 15mg of Metho (5mths now), Nifedipine and Folic Acid. I'll see what the doc says as I'm over the to the GP for now re my meds checks until I see the Rheumy again in Jan. I don't known if it's restless leg. I've had it in the past when extremely stressed for a long period and it feels different. Anyway... I'll get the health bods to try and figure it out. Thanks again and all the best. D
Hi DJK99
I really feel for you having experienced something very similar! I was diagnosed with UCTD in April this year, butwas symptomatic for the previous 25 years. With hindsight, it is now clear that the symptoms I experienced were due to AI disease.
I too experienced excruciating below the knee pain in both legs for several months at night time, whilst I was pregnant with my son 11 years ago. TV and herbal teas helped along with cooling gels and a fan blowing on my exposed legs. No docs would do any investigations as I was 5 months pregnant and they wanted to wait until my baby was born. I now realise it was a flare as I had other symptoms as well. The burning leg feelings soon abated once my son was born, which was a relief as at one point in the early hours of a sleepless dawn, I even thought about amputation! It was that bad!!
Anyway, bunions. 3 years ago I had both bunions done at the same time and 2nd & 3rd toes re-positioned on right foot due to poor foot mechanics caused by arthritis and hyper mobility. (AI disease again) If you are having them done at the same time and if under nerve block or general anaesthetic, mention to the anaesthetist about your burning legs and he can put something in the cocktail to help with that for a little while post op & give you a bit extra for the pain. Depending on your views on pain relief, ask for the strongest stuff they can prescribe & discharge you with and do keep on top of the meds! Even if you don’t feel any pain, keep taking the pills to stop the pain returning. You’ll be pretty immobile for the first week or so and maybe the enforced rest will help with the burning feeling in some way.
Amitryptaline? I was prescribed it 4 years ago for night time choking episodes. Only 10 mg pd managed to anchor me nicely into very deep sleeps and settle the nerve pain. Which was great except I was unable to function properly for kids/work etc, so had to come off it recently. Hoping to try gabapentin soon instead. Some people really get on with amitryptaline so perhaps give it a try and see how you get on.
Sorry for long post, hope you find some of it useful! Good luck with the bunions, it is well worth the hassle! Xx
Hey Horsewhisper (love that moniker!) - thanks for your response. Amputation? Yep I know the feeling. I have foot pain in the am now too I notice... on the soles... and small bruises inside the feet. Weird. Wondered if Erythomelagia....or Sticky Blood? My Cardiolipin was borderline positive for quite a while so unsure what all that means. My ma had many symptoms as I did and she had very bad thrombosis in both legs for years.. until she completely changed her diet. Anyway. re the bunions - I have hammer toes on both feet too (delightful!) but much as I'd love to have them both done at the same time, I live alone with a v demanding fat cat and whilst my friends would help a little I can't see how you could go the loo without a bedpan or being hoisted onto a commode?! How did you manage? I can't bear the thought of going through it all 7 weeks or more at a time (and neither will be work when I tell them how long it takes!). I had a teeny hernia op earlier this year, and a lip biopsy last year - both took months to get over. The hernia wound was unhappy for months and months... I don't heal very well. and pain-wise... well the lip biopsy was horrendous, I wrote back to someone on hear recently and tried to gently explain how it was (ie awful!) and funnily enough didn't hear back. I tried to be positive - and it is different for eveyrone due to age, pain threshold and er support?! So - how did you manage it all - I guess you have family all around? also, I live in a two up two down house with stairs up to the loo, down to the kitchen, and another load of stairs up to the bedroom from the loo... All I could think of is going up and down on my bottom and carefully placed chairs everywhere as I did a "faux run" the other day. I think the surgeon said one at a time due to my personal circumstances. do you agree? Thanks so much - didn't think to ask about this on this thing originally, Deb xx
Hi Deb, horses are my passion, they keep me going! Yes pain and recovery do differ from person to person and the best thing you could probably do is try and make life as easy as you can for yourself. Good idea to do one bunion at a time, at least you can hop about and pivot on the other leg! When you get discharged, physio should come round and show you how to get up and downstairs with crutches. If you can avoid the strain of stairs, that would be a good call. Could a friend pop round and feed your cat and do the litter tray etc. for the first couple of weeks? Maybe help with clothes washing and running occasional errands? Perhaps ask for their help in advance of the op so that they are aware of your needs. Also, take a look at the Red Cross website for disability equipment loan in your area. For a small donation, you can book stuff online and collect usually at a local supermarket car park. I stocked up on a commode, which I had in our downstairs spare room where I camped out for first 2 weeks, a shower seat, a wheelchair and even a Zimmer frame! (Much to the amusement of my kids!) Although I had family helping out, I wanted to maintain my independence as much as poss. I made sure all my essential stuff was at hand along with a freezer packed with ready meals and plenty of goody treats in the cupboard. You may feel whacked out for the first 7 to 10 days after the op and find yourself dozing off during the day. Quite common with bunion ops apparently, so I would suggest that you keep that foot well and truly up as often as you can and snooze away with your lovely cat for company! Xx
thanks everso for your advice! So - it is possible to do both at the same time? I really want to... and I work in social work - previously prescribing mobility aids so know exactly what you're talking about... also I had my ma stay downstairs in my house for 5 months some years ago (rather than a nursing home!) and she got about on her wheelchair, washed herself and I emptied the commode. I had the microwave in there, and naturally I got the stuff from the fridge for her each day. I think I might have to do this to be honest. - I cannot see me ever doing another bunion after going through it the first time - and they are both awful... I'm sure I'll regret it, but maybe I just need to suck it up and ask my mates to dig deep with their help - I've got a couple round where I live and I know they'll do all they can... and pay for carers to empty the commode (asking my mates is a stretch too far as I remember it being pretty grim with my poor ma!). Wow........ it'll be a bumpy ride, along with the usual lupus stuff... I sleep 12 hrs a night if I can anyway - have certainly made the best of this bank holiday weekend ;). I'm sure work will be more likely to understand if I do it once, rather than twice - but guess I'll be out of action for 2 mths... but could work on the laptop once I'm feelign stronger. How was it walking about on the boots?? x
Hi Deb, the boots were a bit weird and took a bit of getting used to (the built up wedgy things that prevent your toes from flexing?) but at least I could be more mobile. Once I could get into Sketchers to go out in, I put my boots back on when back in the house to give my feet a little rest whilst still being able to potter about. I had both bunions done at the same time purely to save time. It was double the hassle (and pain!) but shortened the time I was out of action for. The first 2 weeks are crucial in the healing process, just keep feet up as much as poss as the foot/feet will throb like mad and it helps get the swelling down. I was back in Sketchers by week 6 and fully back to normal by week 12. Hope this helps! Xx
Wow! How inspiring you are! I gotta do it..Icannot bear the thought of going through it all twice... Thanks so much x
Hi Debs, sorry for late reply. If you can bear being very incapacitated and the pain for up to 6 weeks, then perhaps a double op is something to consider. By all means take into account the views of your surgeon as he will provide excellent advice. Do let me know how you get on and all the very best wishes for a speedy recovery! Message me anytime if you like xx
You've been extremely helpful in helping make the decision - mind you the surgeon may not agree to it however he did suggest it at first, this before understanding I only had a fat cat on hand to assist me with my "activities of daily living"! I'll speak to some OT's and physios at work and make sure I have a robust as poss plan to sway him. As long as I have the pain killers, the pain should be sorted I hope - I live with a ton of it off an and on now but I do understand this op's pain is off the richter scale! 6 weeks seems such a long time and it could be longer as I take a very long time to heal these days... but I'm sure I'll survive. Wish the surgery was in my own county however! Thanks very much again and I'll probably be taking you up on the invite to message you at some point! Yikes. Hope you are having a good day. Hug xx
Hello again..... Just wanted to thank you again for your help re the bunions... this time tomorrow I'll be in hospital over night having had them all done (unless the surgeon refuses and he's recommending I don't do both, even though he agreed to it a 2mths ago. I shall feign absolute confidence in the whole thing... and no doubt cry like a baby afterwards! Hah. I may well be writing to you from time to time for your advice, if you don't mind.. I've got all the gear here... and even a fabulous top of the range wheelchair I rented... it's amazingly manouverable! Cannot see me getting on with crutches - now if they'd said zimmer frame I would have said yes! Anyway, I should be asleep- just a little wired pre op nerves etc. Thanks again! D
Hi Deb, it’s lovely to hear from you and all the very best of luck for your op today. Perhaps ask the nurse for a little something to help with pre-op nerves? I did, it really helped me to relax and I floated along to theatre! Maybe mention to anaesthetist that you are sensitive to pain and to really load up the cocktail? You might feel groggy for longer post op, but hey, you’ll have your feet up anyway! If you need an extra night in hospital, do say and don’t let them hurry you out. The more R&R the better. Sending you loads of love and support, I’ll be thinking of you and message me anytime you like xx
Thanks so much! Xx
Hi Deb, how are you feeling? Xx
Hey there - thanks for checking in. How you? All going on for you too I see.. Well I have to say this has been awful. I was in hospital 4 days (under those ruddy lights and the noise and being woken up the whole time - and the food... well, it's the poor NHS and fair enough). I was quite poorly - being sick for 2.5 days and with very low blood pressure. On drip and oxygen at one point as had even worse dip. So I thougth I was getting carers for a big of a mess by the OT (weird as Social Workers do the care planning round these parts - I know this as I work in Social work team as a care manager (social worker wihtout the degree!) and I have to do the same assessments as they do at Sussex Royal County Hospital - ie it's huge! At Princes royal it was minimal to say the least. they didnn't seem to put two and two together about the morphine - I'm obviously allergic as was at A&E last night with suspected worsening of the infections I've got in both feet with ulceration (nice) and they gave me a different morphine which I then had to call 111 for as had allergic reaction one back home - ambulance came straight round and left a 5am when more stable. Symptoms just the same as whilst in hospital. No more morphine of any kind for me....! Still poorly today but I know it will pass soon. So I'm day 9. Problem foot is the right one - they took the second toe off a bit ie shortened it. Told me 5 mins before going in - I agreed to no general just a ton of injections in feet (pain block) and intravenous calming stuff and pain killers as still killed halfway through. So my two feet are going through it and I'm on codeine and the usual cocktail plus antibiotics. Post of next Thursday and hope wil be crutch free at the end,. Falling asleep now so will sign off. Thanks again and let me know how you are , D x
oh they discovered last night I have hematoma on both second toes at the base - on a nerve - hence pain!!!
Oh Deb, I’m so sorry to hear that you have been through the mill with this. How awful to have discovered that you are allergic to morphine, that certainly didn’t help you on the wellness and recovery front. And as for shortening the toe and the haematomas, just more pain to add to the existing pain, not nice at all for you. I hope the current pain relief is helping and I think after the first 2 to 3 weeks things become more bearable. Keep strong, things will improve bit by bit. It is a slow process and in a few months time hopefully you feel that it would have all been worth it. Keep in touch and lots of love xx
Thanks everso. Had a friend round who fed me... beginning to feel a little better it's nearly 24hrs since the morphine so guess it will be nearly out. As long s my 2nd toe on the right doesn't fall off, I'm already happy I have done it (although I've definitely had some serious blips!). I know it will be OK - 4 toes like this just isn't for the feint of heart. Fast forward to Spring and I'll be buying a pair of white Birkenstocks to show them off in! Thanks again for caring and your support. I hope you are doing OK. Dx
Hi Deb, just seeing how you are doing? Xx
Hey thanks for checking in. Really good of you. Hope you are doing ok. I’m through the worst thanks. Post op didn’t go well as surgeon hadn’t left the diagram and instructions for redressing. Took us an hr and me signing agreement to her doing it on a guess as they’d been cut twice since the op due to the extreme tightness and infection etc. So she said she wanted to have me go back next Weds to meet with him and get them checked. Bit worried as the second toe is raised up.. compared to the others. We’ll see. That said my feet look a ton better than they ever have for the past 35 yrs... and that’s amazing. I just hope they turn out ok and the pain stops when I start wearing shoes again. I know it’s v early days! Did your toes stand up from the foot at all at any time, once the swelling had gone down a lot? Thanks so much again xx
Oh yes, I remember the re-dressing and bandaging! Quite a knack to it, I recall. Hope your feet are starting to settle as the recuperation is a bit of a roller-coaster ride. Did you have any big toes fused or just bunion repair? My left big toe was fused and the surgeon set it so it was sticking up a bit so that I could get the foot in and out of boots and shoes with a slight heel on once recovered. My third toe on my left foot was shortened in the same op and that did stick up too. The surgeon said to regularly massage it downwards (I used Bio Oil to help with skin healing on the scars) and strap it down once I was comfortable. Also once I was walking properly on it at about 6 - 8 weeks, the 3rd toe soon started to settle down and now it doesn’t stick up at all. If you can get some foot exercises/physio going when you feel comfortable that would help too, along with proprioception stuff to help with balance. Glad to hear your feet are looking good, I’m so glad I had it done as the horrible nasty bunion pain has gone for good! Hope it does for you too xx
Oh thanks so much for that info! Its normal then! Phew. I just thought that my second toe will be rubbing against all my shoes in future as it had been before - but not quite as bad as was a hammer/claw affair and the first joint up from the foot on the second was peaked so looked like a pyramid toe ;). Well with your fabulous info, yet again, Im not going to worry too much. Im surprised to still be in pain but at only day, er, 18, I guess thats to be expected. My feet look completely amazing compared to previously so Im chuffed to bits about it - but just thought the binding being cut at day 3 and then again a week later would really have scuppered the chances of a really good outcome. So glad its all worked out for you. Thats amazing (seem to have lost the use of my apostrophe on my keyboard!). And no pain... wow.. at least in your bunion... that must be amazing. Hard to tell what is going on right now for me, of course. I have some great Neals Yard Massage oil I added Rose Absolute and Black Pepper to but also some Espa oil fragrance free - prob best to use that once I can get at the scars. Mind you - surgery was done pretty much keyhole - didnt know he was going to do that. So no long scars for me - did you have that? What time did you start doing physio? Im only in week 3 so thoght maybe not yet - and if I stretch it out a teeny bit it feels as though somethings going to go ping inside... and of course, it hurts! Im seeing the surgeon Weds am so will ask then. I wondered if I could send you some pics of before an after - and maybe see yours? You dont have to agree to this but it would really help me if you wouldnt mind? Ive been a little worried... not sure how to attach pics on this though - do you know how? thanks again! xxx
Hi Deb, yes sure, I have some pre and post op pics somewhere on my phone that I’ll PM you as probably a bit too gruesome to post publicly! Regarding outdoor shoes, I bought some trainers 2 sizes too big to cope with the swelling and to provide comfort and support whilst out and about initially. I think I was back into normal sized footwear about 4 or 5 months after the op. Xx
Ahaaa- oops I really missed out on the black friday option then.. mind you there are always sales on so I’ll get searching. Any particular brands of merit you found? Thanks everso for all yr advice xx
By the way - what footwear do you recommend post op for getting... OUTSIDE! ie after Im free of the orthopedic shoes.... thanks! x
Hi - I have had this for years and years. The simplest remedies are at hand. Try rubbing in Olbas Oil on your knees in circular motions and on your feet when you feel it coming on or when you are going to bed. Also on your calves. Another one I used in the heatwave was Deep Freeze Cold Patch (most chemists or supermarkets) I cut the patches in half or even four and placed them on soles of feet and just above toes - wherever you feel the heat. My feet felt on fire before but this worked and I slept! Deep Freeze is even sold in spray form and the icey spray is wonderful. I have a painful shoulder sometimes and half patch on my neck is bliss - they last for 12hours. Hope this helps and good luck.
Hi there, I have restless leg syndrome and have done on and off for years. I read on the internet somewhere that it can be caused by a lack of iron.
I didn't pay much attention to this but after a blood test the doctor put me on some iron tablets, I noticed after a few weeks that I hadn't had restless legs for a while.
That was about a year ago. Now if I get restless legs I know my iron must be low so I take my iron tablet. If I take them regularly I don't get it. I told my doctor this and I think she didn't believe me. I'm sure and it works for me.
Good luck with finding something that works for you x
Hey thanks Kat. I have regular FBC every month (previously every 2 weeks) and all was OK ie no issues with iron... I have an excellent diet and also take Super Elixir (well expensive green powder!) and so I'm guessing it's not iron deficiency.. however, our levels here compared to the US are very low - so maybe I'll start eating more watercress etc... thanks again! D x
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