I'd be interested to know if any other pred takers have this problem or anything similar, especially if they have found some kind of solution to it. At present I'm on 30 mg per day, reducing in a couple of days to 25 mg.
The problem is that nearly every night between 1 am and 4 am I wake up with burning hot calves and ankles. The heat is accompanied by a low level tingling, not quite pins and needles. (In fact I think the tingling is always there, but I don't notice it so much during the day)
As I sleep alone in a king-size bed, my first response is to move my legs to the cool side which gives some immediate welcome relief. The real difficulty is getting back to sleep which I rarely achieve and this definitely isn't helping when I'm so fatigued already.
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Marijo1951
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Hi - I recognise your description very well. I also had "twitchy" legs, which kept me awake and drove me mad. Much of this dramatically improved when I started to take 800-1000mg of magnesium at night, but the tingling continued and got worse, until it was really painful. Eventually I saw a nerve specialist who prescribed Gabapentin, and the symptoms almost disappeared. I dare say they would have gone completely if I had taken it 3 times a day, as recommended, but I found that taking it during the day made me too sleepy to accomplish anything, so I cut it down to the night time dose.
It may not be the answer for you, of course, but I thought it worth mentioning.
Thank you for our response. It's good to know I'm not the only one. Only last week I started taking magnesium before bed, but the dosage is only 375 mg, so maybe I need to up that or possibly have an epsom salts bath before bed every night in addition. I'll look into Gabapentin if matters don't improve soon.
It wasn't as bad as yours sounds to be but I had a similar effect during the 5 years I had PMR without pred - I permanently slept with my feet out from underneath the duvet! I still cannot bear to have my feet "trapped" under tucked-in bedclothes and the big American comforter things are a nightmare for me. We had lightweight ones while on holiday in Malta recently - I had to throw mine off and used the blanket they supplied instead and every night had to pull the sheet out from under the mattress. One cleaner got the message - I loved the days she was on!
always good to pull sheets and blankets out from the end...also sleeping under tight blankets at the end cause plantar fasciitis and who needs that extra pain in the foot!
This is very interesting as it sound as if it's the PMR that causes it rather than it being a steroid side effect as I'd assumed. I'm seeing my rheumy on Monday. Maybe she'll have some ideas, but I'm not sure she'll be friendly as I'll be telling her I opted out of the intravenous bisphosphonates appointment that she insisted I needed.
As a matter of interest why did you decline the bisphosphonates? I am on a break from them at the moment but I am someone who has had lots of fractures as a result of being on long term steroids, and the bisphosphonates do considerably reduce the risk of fracture and the infusions are much better than the oral version! I quite enjoyed the infusions as it meant an opportunity to sit and rest for a couple of hours lol!
I just think the possible side effects sound much worse than the possible results of avoiding them. However I'm not convinced that I have osteoporosis and I haven't been on pred that long. If I have to take it long-term and a future scan indicates that my bones have deteriorated I might think again.
sounds like we have the same symptoms. I was confused at first too. More bothersome when sitting n trying to sleep. But finally last night I seem to have a little less pain , though this morning it settled on the backside! ( a burning sensation) Still I wonder what the next mirage of symptoms will be my thought is it’s the PMR and maybe it needs to just burn itself out, however long that takes. In the meantime we can keep each other informed so we know we’re not going crazy n the symptoms are real! Sleep when it hits you n go with the flow if you can. 😍
I know. You just have to be fatalistic and accept that you've lost a lot of control in your life. Well, I watch a lot of daft old British films on You tube and get quite a lot of knitting done in the middle of the night or manage to complete a difficult jigsaw puzzle, so it isn't all bad news. I have a slight problem with the people around me who are always sympathetic but I know they can't quite understand how distressing it is to be woken up like this so, as you say, this forum where other people share the same problems is invaluable.
Well we do have each other! Love those old Brit movies n books also a lot better than the news over here these days ☹️. Get well Marijo and pamper yourself!
Wow! I recognize this description. I finally determined that usually I dont drink enough water and am a bit dehydrated, thus try to drink a cup of hot water in the evening (think cuppa tea without the tea). Also when I am faithful to my daily multi with B complex and Magnesium, I sleep all nite! At this age, one would think I would be able to have a habit of doing the above, however I frequently forget...and back to the horrid nighttime leg/sleep problems🙃
I was diagnosed by a NEUROLOGIST about 6 yrs ago now with Peripheral Neuropathy after many tests because of BURNING legs, I could not even stand a sheet on my legs, I slept with my kegs dangling over the side of my bed.I could not stand clothes on them either, so I went around the house in a long light summer soft dress, so that I could sit with it tucked up..the burning was like being forced to stand in front of an open fire, there was NO escape from it..
The treatment was/is GABAPENTIN, & yes, it does take, taking the proper dosage 3times per day to get full relief. With all the problems I have right now with my legs, which my GP has diagnosed, Severe restless leg syndrome, she said I was to STOP taking the GABAPENTIN, Infact she withdrew it from my repeat prescription. As she said she “think” this could be what is causing the problem with my legs now..
So I am right back to where I once was with the burning legs all back again, I NEVER liked taking the GABAPENTIN, as it did make me feel like a ZOMBIE, so I stopped it, then the fire came back big time, so after weeks of burning pain and no sleep I was forced to persevere with the GABAPENTIN , & it does stop it if you take the full dose 3 times per day.
My GP though blamed what is going on with my legs now, on the GABAPENTIN yet she prescribed me a similar drug Carbamazepine, for the Trigeminal neuralgia, which can be helped by either drug, yet the Carbamazepine is NOT helping my legs just as the GABAPENTIN did not help the TRIGEMINAL neuralgia.
My next GP appointments is on the 20th, & I am raising this with her as I just can not go on like this, from head to toe I am in pain, with my legs burning pain.
I cannot put clothes on never leave the house unless it is for my blood tests & doctors appointments. Because I can NOT stand this burning pain...I think it is time she referred me to a specialist of some kind that can run tests she can’t. To see just exactly what is all going on with this body of mines. It is time to get to the bottom of this.
PS. My burning legs was years before being diagnosed with PMR, so I do not relate the two.
I go through bouts of RLS . It's painful and I shuffle feet all night. I saw a tv programme in uk a few months ago about restless and painful legs. One poor man only go relief by scrapping open upvc door and scraping it across his feet almost closing them in door. I do find I have to be quite rough with legs. Banging on bed and running against sheets until they burn. Sorry. Mine starting to feel like they are going to be be naughty tonight. 👣👣👣👣👣👣
This does in a way remind me of the terrible restless leg syndrome that I had when I was expecting my fourth child (now 31) but that was more constant involuntary movement rather than burning heat - but just as debilitating in its own way as I could never get back to sleep then.
Thighs burning is called meralgia parasthetica and is usually caused by a problem with the nerves supplying the upper leg: mayoclinic.org/diseases-con...
I am so sorry to hear how bad yours is! I too have peripheral neuropathy but not as badly as that and also meralgia parasthetica where the outside of your thighs burn and tingle or are numb. But I also have really bad restless legs normally and have found since thenGP put me on quinine sulphate I have been much better. My restless legs definitely have a connection to how much I drink as well, because if I have not drunk enough and my stomach and bladder are very acidic then it is ten times worse. Since I have had kidney stones I drink lots of sparkling miners Water as well to make sure I get a regular supply of all the minerals and that also seems to have helped. But if you have the burning pain it is definitely nerve pain and the best treatment for that is gabapentin. I really hope you can get some relief but I would insist on a referral to a nerve specialist! Have you have nerve conduction tests? I have and my nerve function is all over the place especially in my legs where there is virtually no signal between the top of the leg and my knee...
Yes I had the nerve condition test 6 yrs ago when diagnosed with PN, I had suffered for 4 yrs previous with the burning legs but either the doctors did not believe me, or they had no idea what was causing it. Eventually I DEMANDED to see a specialist, as I was at my wits end. I am not very confrontational, especially with those whom I judge to know better than me. (doctors) I certainly have learned that not to always be the case from this group.
After many examinations x-rays, set up by the neurologist, I was moved on to tests of all sorts. Se included needless eing put into my feet, legs, arms & hands. Then my feet placed on a plate, with heat building up to see what I could stand, now the funny thing is, although my feet legs, and hands can. E on fire, I never felt that heat from that plate, on my feet, weird or what? the outcoming result was PN.. The Neurologist sent me a lovely letter of how to take care of myself..lol lol
I actually believe that this restless leg diagnoses is actually the PN amplified as it feels like it is all happening because of NERVES twitching everywhere from my feet to my thighs.
If I actually rub one of my feet against the other or on my leg my whole body jumps.. it is like electric shocks shooting through me.. But I am no doctor, & only guessing. However I think the restless leg syndrome could also be a guess by my doctor..
Thank you. I usually have a chamomile tea before bed and have noticed that on the odd occasion when I don't bother, my sleep is even more disturbed than usual. What you say about magnesium and vitamin B complex echoes other responses. I'm definitely going to concentrate on that.
Sometimes I put the heating pad on my feet and ankles and the helps some also
Hi,
It sounds like they need to rule out peripheral neuropathy as a source of your symptoms, have you ever been offered nerve conduction tests?
Vit B12 deficiency ( pernicious anaemia ) can cause similar symptoms and is an auto immune disease in its own right. It might be worthwhile asking for your B12 levels to be checked as if low it needs to be replaced by injection as oral tablets aren't absorbed.
I have pernicious anaemia, when I was on high dose prednisolone I had similar symptoms which settled once I was on a lower dose. It doesn't sound like restless legs to me, the burning and tingling is much more typical of nerve involvement.
The neuropathy was years before the PMR, I had all the tests before the diagnoses, some quite painful to. First they thought it was “small fibre neuropathy” but because of the amount of sweating I did, they decided to test for Peripheral neuropathy...
As for the restless legs, my legs seldom STOP moving of their own accord. Trying to put shoes on is like some task on a TV show, they sway from side to side, & when I think I have it, my foot drops and knocks the bloody shoe on it’s side, so As I said, it is a task in itself. If hubby is around he has to put my feet into my shoes, actually it is “slippers mostly” As I go nowhere these days. I can’t drive now either, cause the legs just keep jumping off the pedals or ONTO the pedals when my foot drops & that could be dangerous if sat at a road end & I suddenly hit the accelerator. As I found out one day MONTHS ago.
I took some video of how my feet were when trying to put them into my shoes, my hubby took video of my legs jumping & me walking & how they shook like jelly & almost buckling under me, they feel so weak. It was only when I took the video with me to show my GP, that she realised there was something else going on with me.
But was not sure what.
Then the next time I saw her she diagnosed Restless Legs, started me on roprinol, I have for years had legs that I personally HAD to move constantly, long before being diagnosed with the PN, I had to move them as they burned like hell. They were not moving, jumping, swinging, of their own accord. It was the burning that made ME MOVE them... I would swing them back & fwd as they hung over the side of the bed, STILL DO..As they are back to being on fire again since she stopped the GABAPENTIN, I can not bear my bedding on them, but then my legs kick that off anyway. Lol lol
Gosh, what you describe , sounds absolutely ghastly! I do feel sorry for you. I have never had the tingling nor burning, but I had restless legs, for many years, until I read something on 1 of the forums. Don't laugh. It works for me. Place a bar of soap, any kind,under your fitted sheet. When the restlessness starts, I rub my foot over the bar, and it helps immediately. I do hope you find help for the burning soon.
Sounds to me like you definitely need a referral to someone to look at the whole picture. Maybe a neurologist? Maybe an endocrinologist as it may be that your hormones are completu ‘up the spout’. Whatever is going on don’t give up-make a real nuisance of yourself until you get some answers: don ‘t Let the GP fob you off-this is something more systemic and needs to be addressed!! Hope you can get some help and relief one day!! Keep us posted!
I actually read that too when doing a search for some way of curing this. But was never sure if it was a joke or not, there WILL be a bar of soap under my bedsheet tonight though, thanks..
As well as the other comments I have made in replies further down the page, it has just occurred to me: has anyone ever looked at your back? Do you have back problems? I have quite bad back problems with degenerative discs and arthritis and some of the pain I get in my legs is definitely from my back, and the meralgia parasthetica can be caused or exacerbated by lower back problems in particular. Maybe you should get your back looked at as well as everything else? Just a thought...
I too have had burning thighs with PMR and on Prednisone ( low dose now). I was prescribed Gabapentin and it worked. However, I am not fully mentally alert the next day. The doctor told me to take it earlier and not at bedtime and it helped; but, the next day I am still even confused at times. I go on and off of it and I am now off because I need to do a lot of Christime time decorations, shopping, etc. My doctor didn't say anything about me going on and off but I have read that you have to be very careful stopping Gabapentin if you have taken it for a long time.
Hello everybody. I must say how grateful I am for all your interest and advice. Unfortunately I'm having to write this in the library because I spilled a cup of tea over my router yesterday and lost wifi at home. Increased clumsiness is definitely part of these conditions . A new router is on its way to me so I'll be computer-enabled next week. In the meantime I apologise for not acknowledging some of your responses.
Hard luck - clumsiness is a common topic for many PMR patients! Don't worry about not answering everyone individually - it takes a lot of effort sometimes!
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