I spoke our hospital’s new rheumatologist In May about the recurring burning sensation I have in my feet and hands, particularly at night, and he prescribed Amitriptyline. I asked my fellow Lupies here for advice and experiences of this drug and the response was brilliant thank you. However, by the end of June I was extremely constipated with nothing at all appearing to help that problem and the burning sensation returned with a vengeance. I contacted the helpline straight away and the Rheumy phoned me back and said to come straight off the Amitriptyline and that he’d prescribe Pregabalin (75mg every night) instead. The capsules were only ready for collection yesterday and when I read all the possible side effects I took cold feet (if only!!) and decided to ask everyone here if you have any experience of this drug before I take the first one tonight.
The Rheumy also said he wanted to see me face to face on 30th July which he assumed would be a month after starting the drug, but by the time he wrote to my GP, my GP sent the prescription to Boots and Boots told us it was ready for collection almost 3 weeks had passed! He says he wants to see me to assess for peripheral neuropathy and the need for nerve conduction tests. I do experience tingling and shivers in my lower legs as well as the hot/burning sensation in my feet and hands. If anybody can throw any light on what these nerve conduction tests involve I’d also be grateful.
All experiences and opinions gratefully received. 🤗😘
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Spotty-ewe
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Morning { well here anyways {6:30 AM I had tests done years ago at my specialist and the did needle picks on toe's-ankle's and on up and then they did elect shock .Sorry i can't remember the letters of what they are called .Is this what you are having done .I think it was in 2013 if my cloudy memory is correct. Sometimes my brain is like aluminum foil : Nothing sticks " .hope test serve to help . C & J here in cloudy NH
Hello JJJ thanks for your reply. Sounds a bit like what one of the Rheumatologists did with a sharp object and a blunt one and asked me to tell her which she was using over the soles of my feet. But she didn’t take it any further at that stage (about 2 years ago). I don’t like the sound of the electric shock though , although I would give it a go if you think it might leave me with an electric personality? Haha. What did they discover from your tests? Did it lead to further diagnosis or just help with treatment? Thanks again JJJ👍🏻👍🏻 Take care.🤗
Hi.i take pregabalin twice a day.i was prescribed it by my rheumatologist for pains in my hands and feet 95% of the time it does the job but if I need abit extra I can take paracetamol with it.ive had no issues with.sorry I cant help with tests .kind regards xx
That’s very reassuring that Pregabalin causes no issues with you and that it works so well for 95% of the time which is excellent. Many thanks for that. Take care. 🤗😘
I hope it helps you 🤞.one thing I didn't mention was....never run out. I ordered my script once but it didnt arrive in time and I ran out.boy did i know it it took several days for the pain to settle again....lesson learnt.now I order with at least a week left .its now a controlled drug so you only get a months worth at a time .good luck cx
Thanks for that tip SML. That must have been awful! Yes, I noticed it had a label on it saying it was a controlled drug. I’ll see how it goes and will report to Rheumy when I see him on 30th. Thanks for your kind wishes. 🤗😘
Hi there, I have to say I was prescribed Amitriptyline and it did absolutely nothing for me. They kept upping my dose which just made me very sluggish ( even more than normal) and then I had to take Fibre gel and Movical for the constipation. I decided enough was enough and stopped it.I was sent twice for nerve conduction tests. My then Rheumy said you probably will not be able to tolerate it which just exemplified that he felt my pain threshold was pretty low. It is at worst temporarily uncomfortable and makes you jump, like small electric shocks. My tests showed no issues and yet the awful burning in my hands and feet continued.A Neurologist put me on Garbapentin 9 a day!! I could not function so now I take two at night as that is when the burning really intensifies.It is great that your Rheumy seems committed to helping you You will be fine with the nerve conduction tests honestly xxx
Interesting Amitriptyline did nothing for you either - well nothing positive anyway. We could have well done without what it did for us! 😂😂 Yes, my GP had to give me something for the constipation too and it is only now I’ve been off the Amitriptyline since 26th June my bowel is finally returning to normal. Many thanks for the reassurance about the tests Cecily. Like you the burning of hands and feet seems much worse at night especially in bed under warm duvet. Hubby has had to move to spare bed as I’m constantly moving hands and feet seeking cool spots or having to get up to get cooling pad I bought for my feet.😁 9 Garbapentin sounds a LOT! No wonder you cut it back.
Thanks again for the reassurance Cecily. 👍🏻👍🏻 I hope your treadmill is still going well.🤞🤞 Take care. 🤗😘
Yes sadly all medication had its downsides doesn’t it. The morphine and iron I take also have the same effect but since I have been a vegetarian that seems sorted thankfully. Honestly the nerve conduction tests will be a doddle for you with all that you cope with. They are just like small electric shocks that make your arms and legs jump even when you know they are coming. I was a complete zombie on 9 Garbapentin. I lost days and weeks. Morphine has it’s downside but it keeps me able to live as opposed to exist. The treadmill is going well but like always I am impatient and trying to push my body quicker than it is able. I pulled my hamstring trying to walk at 2.8 km an hour so now I am back down to 2.2 km an hour. My poor knees are wrecked, one is so swollen it looks as if I have a tennis ball under my leggings but the other one where the kneecap is loose hurts more as it has sunk. Last week I managed 30 minutes a day. This week I am doing 32. 8 hope I get to the stage where I feel like it is doing me good lol. I had Adele blaring away today as I struggled counting down the seconds. Xxx
Thanks for the extra explanation about the nerve conduction tests. 👍🏻👍🏻 You are a real warrior and making fantastic progress with your treadmill. But don’t go overdoing it! Perhaps taking it easier by reducing your time and speed for a day or two will allow some recovery and then gently build up to your current time and speed again. Don’t push your poor knees too hard. But you are doing SO well. 👏🏻👏🏻 And Adele will be perfect to work to. 👍🏻
Thanks again Cecily for the reassurance. Take care. 🤗😘 Spotty
Thank you so much. It bloody hurts so I hope it is doing me good. Today I made bread and cleaned the upstairs bathroom which is my pet hate given my knees and a hernia so when I got on the treadmill I was already feeling it and not wanting to do it but I did. I have just bawled my eyes out watching Bears Around The House. Wonderful people saving bears in Asia. Cruelty makes me howl with rage but the people who rescued these bears deserve medals xxx
Totally agree with you there Cecily. I can’t abide cruelty either and think there should be much harsher punishments for the perpetrators. Thank goodness we have people who care and put their own lives at risk to rescue our wildlife. 👍🏻👍🏻
Hugs gratefully received. I am not a dainty crier, all snot and bleary eyes. Normally I have to turn over but it was just too wonderful in places. I have now joined their newsletter and intend to set up a direct debit for them. It won’t be much but every little helps.If you get a chan e to watch it I am sure you will love it too xxx
I’m sure I would too. I sponsored a Sperm whale named Dolphin, years ago but it got hunted they assume when it went missing, and a rhino I sponsored named Notch ended up being poached. So distressing! I can empathise with your crying - I can make a bit of a mess myself when in that mood. 😭😭 Not a pretty sight! 😂😂
Your direct debit will be greatly appreciated I’m sure, no matter how small. You have a kind and generous heart. 🥰
When I was working I sponsored two girls in Burkino Faso for 25 years and two dogs at a time from Dogs Trust . It made me feel I was helping . Benefits do not allow me to be so generous now but when Neil got a tax refund we went to Asda to get donations for the food bank that helped us. We loaded two trolley fulls and it felt so good to give something back. The Christmas before last we bought tents, sleeping bags, radios, hats and gloves for the homeless community and treats for their dogs. If we won the Lotto we would do so much good and pack a bus full from Wales up to the London Lupus Hospital..I can but dream. Take care lovely. I hope your nerve conduction test goes well xxx
What a wonderful dream you have Cecily. I hope you do win the Lotto as I can see you’d do so much good for those who genuinely need help including wildlife. We need more folk like you. I’m off to bed now and will think of your lovely dream as I fall asleep. Sleep well Cecily and I hope your dream comes true. Thanks for your kind wishes. Love and hugs 🤗😘💝
Many thanks for your kind wishes Farmer. I wish you the best of luck with your appointment too. Stabbing pains sounds much worse than hot/burning extremities which are unpleasant and uncomfortable and can keep me awake, but can also be cooled and soothed. I hope they can give you something to ease that pain. 🙏🏻🙏🏻 Take care. 🤗😘
I have had the tests , they are fine a bit ticklish is all and gabapentin but Tests showed nothing and as you know things worsened since. To me the tablets did take the edge off at times but I’d also take painkillers too. As svfarmer I also get stabbing throbbing pains in toes and wicked cramps toes and lower legs.
I guess it would be best to give them a try and if no help go back to rheumy, you can always stop them if adverse affects or doing nothing. Best of luck 👍 I still use my dogs cooling pad which helps a bit to cool only next thing my feet are freezing discoloured and painful 🤷♀️
You and Farmer sound like you have a much worse deal than me. I VERY rarely get stabbing pains in my toes or feet and if I do it is fleeting (long may that last!). But the Rheumy is obviously suspecting peripheral neuropathy so perhaps I’ll be seeing a Neurologist next??
Thanks for telling me your experiences with the tests Stiff and your condition. Sounds like you have severe Raynauds like me which means our thermostats don’t work. I can’t tolerate extremes of temperature.
No not worse spotty we just all have our own different problems, the burning is awful too, disruptive to sleep and sheer uncomfortable. Yes hopefully if no help from drugs or test a neurologist but I’m still waiting all this time 🤷♀️
Temperatures seem a nightmare, such a fine line just cooler the swelling can subside but then colour change finger toes stiffness raised veins, is yours that sensitive too? Sorry to hear that it’s very strange isn’t it.
I don’t get noticeable swelling although fingers can feel stiff and hard to bend at times when too hot and yes my veins stand out then whereas they normally can’t be seen and I’m a bit of a nightmare to anybody trying to get blood samples from me.😂😂 It’s my blood!😂
Yes Raynaud’s is a weird condition with some fingers and toes even being a different colour from others. 🤷♀️ I was always embarrassed sitting in the shade of a hot country like Greece with blue/grey toes which looked dirty! 🤦♀️. Now I’m older I couldn’t care about that side of things at all, especially now I know the reason for it too.
I’ll let you know how it goes. Thanks for caring. You look after yourself Stiff. 🤗😘💐
Hi. I started taking Amitriptyline (10mg then 20mg/night) for muscle and joint pains. It's taken me a while to figure it out (it's also causing increased brain fog and difficulty choosing the right word!), but my GP and I think it's causing increased muscle pain and stiffness. I can't get up from a sitting position because of the pain and it takes about 1min to actually straighten up. I see my GP face-to-face on Friday so that he can hopefully prescribe an alternative.
I've had nerve conduction tests and I would say they're uncomfortable, rather than painful - you'll be fine! Take care and stay safe, xxx
Hi Meg, Sorry to hear of all the trouble you had on Amitriptyline. 👎
I was only ever on 10ml but due to the severe constipation and the fact it didn’t seem to help with the burning sensation after a month, the Rheumy said to come off it immediately. It will be interesting to see if your GP will suggest Pregabalin for you as an alternative. Strangely enough I’ve also had increased trouble finding the right word - so embarrassing, so hopefully that will improve too for both of us. 🤞🤞
I hope your GP finds something that really helps you and if so let us know what it is.
Thanks too for the reassurance about the nerve conduction tests.
Thanks for your kind words. I'll let you know if my GP prescribes Pregabalin. TBH, he's very wary of giving me any kind of painkiller because I have liver fibrosis, but we'll see. I hope you'll feel better soon and don't worry about the nerve tests - you'll be just fine!
Oh no, you have liver fibrosis too? I’m sorry to hear that. It sounds like you have a caring and cautious GP so that is a good thing. I hope he finds something that will help you and not affect the liver fibrosis in a negative way. Let me know how you get on. Take care Meg and very best wishes. 🤗😘x
I hope it does Meg. I’ve taken it for 2 nights now (75 mg per night) and so far have had no side effects at all. Fingers crossed it stays that way and is the same for you. 🤞🤞 Hugs and best wishes 🤗😘x
The burning in your feet at night is a flare up sweaty . Your rheumatologist needs to find the right cocktail of medications to get the flare under control. And get your illness in remission. I went through it so many time. It’s horrible. Hoping you feel better soon 🙏🏻💜💙😊
Hi Leenie, Thanks for your sympathy, understanding and kind wishes. I’m hoping the Rheumy will finally get the right cocktail of drugs for me and that these tests he proposes doing will help him to do that. Hoping you are keeping okay at present. Take care. 🤗😘
Sorry this late but I have only just seen your post.
This sounds like me 2 years ago and I was sent for these tests which are called ‘nerve conduction tests’ I believe. I had them done twice. They were a little uncomfortable but nothing more, especially after suffering the burning pain I had in feet, legs & hands.
I too was offered Amitriptyline which did nothing and also Gabapentin, which again didn’t work. My GP then suggested a drug called Duloxetine. I was sceptical but I would have tried anything by that time as like you are now, I was climbing the wall.
Well what do you know it worked, eventually. I was started on 2 a day which didn’t really help, so I was told to take 3 a day and that did the trick. I have taken them for about a year now and as far as I am concerned I wouldn’t be without them. I was finally diagnosed with Small Fibre Neuropathy and according to my Consultant the GP was right to give me the Duloxetine.
I hope you soon feel better because I know what you are going through and it’s bl***y awful.
Thanks for your detailed experience of this condition Bakbre and how you got on with the various medications. It is very helpful. 👍🏻👍🏻
I’ve just started Pregabalin but if it doesn’t help by the time I see the Rheumy face to face on 30th I’ll ask about trying Duloxetine. Thanks for your sympathy and understanding and I’m so pleased to hear you’ve now got something that helps. It gives me hope. Take care Bakbre and thanks again. 🤗😘x
Sorry to hear all your concerns. I was initially thought to have lupus now changed to limited scleroderma (CREST). But the symptoms of many of these diseases overlap.
I too have burning feet so I had nerve conduction studies carried out.They were done in an out patient setting took around an hour and my hands and feet were assessed. Nothing to worry about, the results are reviewed by a neurologist and sent to your rheumatologist.
They showed that I have peripheral neuropathy. I was started on Duloxitine in addition to gabapentin and then changed to fluoxetine. I believe that Amitriptylline is in the same family as duloxitine and fluoxetine.
These drugs can help and I also have fibromyalgia so they have a role in managing several symptoms of Connective tissue disease.
This combination works well. I also have Raynauds so I have an infusion in hospital once or twice a year to reduce the severity and I manage myself day to day.
The burning has lessened, the rheumatologist thinks I have erythomyalgia in addition to a host of other symptoms of connective tissue disease/autoimmune illness.
Have you seen an Occupational therapist? They are part of the Rheumatology team and have great advice on managing your condition day to day. The Rheumatology nurse is also fantastic and a great source of information and reassurance.
Wishing you the best of luck It takes months to get the right combination of treatment but have faith and ask to see the physio/OT/Rheumatology/Lupus nurse they are an essential part of the team and can offer great advice to patients.
Thank you for sharing all your experiences UCTD and thanks for the reassurance about the nerve conduction tests.👍🏻👍🏻 I have SLE and Raynaud’s, among other things, but the Rheumy suspects Peripheral Neuropathy now too so hopefully the tests will confirm either way. 🤞 Unfortunately our hospital here in Dumfries is small and doesn’t have specialist nurses just general rheumy nurses. I will also have to go to Edinburgh if the Rheumy thinks the nerve conduction tests are necessary after assessing me on the 30th. With Covid still around the prospect of having to go there is worrying too. But I’ll cross one bridge at a time. I’ll speak to a Rheumy nurse and see if I can contact the OT in our local hospital for advice as you suggested. Thanks for your good wishes and advice. All very helpful and much appreciated. Take care. 🤗😘x
Hi, I had Nerve Conduction Studies (pads on skin and electrical pulses) and EMG (Electromyography) (fine needle in leg muscles in my case) which are generally for large fibre neuropathy diagnoses and then a Thermal Threshold Test (warming and cooling pad against the skin) which was what they diagnosed my Small Fibre Neuropathy from. No treatment as only diagnosed just pre-lockdown. The thermal test was sometimes briefly a little uncomfortable as was the NCS, but really nothing to worry about. I didn't have any problems with the EMG either at the time but did get some pain afterwards. They should send you some leaflets but I did find Sheffield NHS had one (afterwards) and interestingly it says they may not do the EMG if you are on Warfarin. sth.nhs.uk/clientfiles/File... My leaflet didn't say that and I wasn't asked - I am not, but do take a blood thinner, so wonder if that was why I had a few issues. I don't think that everywhere does the Small Fibre tests but it sounds like a lot of us need them. (Believed to be behind 50% of fibro diagnoses). Best wishes
Hi Bookish, your explanation and description of the tests is very helpful. Thank you. As I mentioned to UCTD I’ll have to go to Edinburgh for the tests if my local Rheumy thinks it is necessary after seeing me on 30th as our local hospital hasn’t the technology to do them. I’m worried about that too.😑
That was remiss of them not to tell you about the connection with Warfarin, so thank goodness you weren’t on it. I’m only on daily aspirin as a thinner but will even ask about that if I have to go for the tests. So thanks for telling me that.👍🏻 I can always stop taking them for a few days leading up to the test. Thanks too for the link. I’ll look at that in a minute.
Hoping you get your treatment now restrictions are lifting.🤞 I hope you aren’t suffering too much while you are waiting. 🙏🏻Take care UCTD and keep safe. 🤗😘
Sounds like a very good rheumy. I have had the burning pain in hands and feet for a could of years now. My feet then change to throbbing pain...like they’ve been repeatedly been hit with a baseball bat. It is peripheral neuropathy. However, as I understand it, sometimes it’s small nerve fibres at work...and they don’t always show up in the test. My doc prescribed amatriptaline...and I think they helped...but I wandered in a daze, put on weight and I think they messed with my hormones (although that could be age!) Anyway, she then recommended duloxetine (different drug type), supposed to be very good. They are still sitting in my cupboard as I’m scared to start any more meds until I get the main one sorted. Silly not to start...but disease is progressing and I want rheumy to decide what lupus Sjögrens drug to add to the hydroxy chloroquine first. I think you’ll find the nerve test fine. A little bit uncomfortable...but not much. Good luck! X
Hi Puffy, Yes this is a new Rheumy so I Googled him and he appears to have written papers on all sorts of matters so hopefully he’ll be good and thorough. 🤞 Sorry to hear you’ve experienced the same and much worse. It sounds like your condition is more advanced than mine although I notice it is worsening with the passage of time. From what others have said on this post duloxetine sounds like the best thing for this problem so I would give it a go if I were you. The Rheumy always asks what drugs you are on so will work around that. You don’t want to be suffering those awful symptoms if you don’t have to.
I appreciate you sharing your experiences and thanks for the reassurance about the tests. I hope you have your medications sorted out by the Rheumy soon, but give the duloxetine a go while you wait. Take care. 🤗😘
Hi, just wondered if they did the Thermal Threshold test or any autonomic testing when you had your nerve conduction? I know that in the US they use biopsy for Small Fibre, but I did get a SFN diagnosis from my thermal test, (didn't do autonomic sadly) so could be worth asking, if they didn't. Lots of links between SFN, dysautonomia, mast cell activation and relatively high oestrogen, (and Sjogren's, thyroid and other AIs) so well worth looking into balancing hormones and making sure liver is functioning as well as possible (to help you metabolise and get rid of oestrogens, and general toxins), especially if you know your hormones are off. Best wishes
I am a pharmacist diagnosed with Lupus nephritis 2 years ago. Although I haven't needed to take Pregabalin, I can tell you that you most likely will NOT get any of the side effects. When they do trials, they include 1000s of patients and if even 1 person gets symptoms during the trial period they have to document it, even if it is totally unrelated to the drug like a headache or nausea etc.
Don't let the listed side effects put you off. The benefits will hopefully outweigh any possible side effects and improve your quality of life. There is only 1 way to find out and you can always switch to another drug if it doesn't suit you. It's definitely worth a try!
Bear in mind it won't be a quick fix. These drugs can often take up to 3 or 4 weeks to notice an effect due to a gradual build up effect so if there are no instant improvements, please persevere. I wish you all the best!
I have so far taken 1 Pregabalin and so far no side effects unlike the Amitriptyline which made me very groggy even after the first pill. Many thanks for the reassurance which coming from a professional like yourself is extremely encouraging. Thank you. I’ll persevere with the medication until I see the Rheumy on the 30th and am able to report to him then how I’m getting on with it.
I’m sorry to hear you have Lupus nephritis. Kidney involvement is always a worry. I hope it is being controlled and not making you suffer too much.
Many thanks for your professional reassurance. Hubby phoned the pharmacist in Boots to ask if Pregabalin was compatible with Citalopram, which I take for anxiety, and luckily she reassured us about that. Thank goodness for the expertise of pharmacists who can give advice and reassure us. Thank you once again Ar, much appreciated. Take care of yourself. Best wishes. 🤗😘 💐Spotty
Hi Spotty, I had a nerve induction test last autumn as I had general muscle weakness. Activities like walking up stairs and lifting the shopping etc I struggled with. I also had a constant burning sensation in my hands like I had just put them in a bed of nettles - it was really bad when I woke in the mornings. My fingers felt “thick” (even though they weren’t swollen) and cumbersome - doing fine actions like sewing on a button or using a weeny screwdriver were tricky for me. All these symptoms (along with many others!) have abated now that I am on Pred and Methotrexate for the GCA.
The test itself was fine and was done quite quickly. Although I felt apprehensive beforehand, I felt just the occasional mild bit of a tingle here and there. It didn’t hurt. My dad had an autoimmune condition called CIDP, a type of neuropathy which is why I got referred for an EMG. The chap who did my EMG, did my Dad’s 18 years ago!! We had a lovely chat about my Dad (who sadly passed away 12 years ago) and spent more time chatting than on the procedure itself!
Anyway, that was my experience and it all came back normal, along with normal APS bloods. I haven’t taken Pregabalin, so no suggestions there. At least an EMG will help rule out any neuromuscular issues. I found taking an anti-histamine at night helped ease the burning sensation a little. Hope you get some answers and some respite soon from the burning sensation, it’s so not nice. 🤗😘🤗😘
Hi Horsewhisper, thanks for sharing your experience of the nerve induction test and your symptoms. Very helpful and very reassuring, thank you. That was a wonderful coincidence to have the same man for your EMG as your Dad had, and lovely too that you were able to chat about your Dad with him. It is always uplifting to talk to anybody who knew long lost parents and it helps to keep them close to us although they have long gone I find. Sorry to hear of your loss. My Dad died in 1989 and my Mum in 2006 and it doesn’t get any easier - still miss them terribly.
Thanks for your kind wishes. I’ll let you know how it goes.
Such kind words Spotty - and yes you are right, talking about them does keep them close. I think I would have really benefitted from his wisdom and experiences regarding autoimmune stuff - although he is not here to share, I have this lovely forum with you amazing people instead, which is wonderful. A big time gap for your Mum and for you, with your Dad passing, it’s such a shame when they go. Yes do keep me posted, I’d be interested to hear how you get on. These autoimmune symptoms are so varied and troublesome and sometimes not very conclusive. Have a good week and thinking of you 🤗😘
So true about benefitting from parents’ experiences and wisdom regarding so many different things. My Mum was diabetic and nobody else in the family we are aware of had autoimmune conditions, but as you say with this wonderful forum we can learn so much and have the support of like-minded people. It is lovely.🥰
You have a good week too Horsewhisper. Take care. 🤗😘💝🐿🐴
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