Following a phone appointment last week with a different Rheumatologist to my usual, I have been prescribed 10mg Amitriptyline for my burning feet which often keep me awake. If I have enough energy when they are really bad I get up and wrap a Thermos Ice Pack out of the freezer in a towel and put that under my feet. Ah, bliss. However the problem is becoming a common occurrence now so the Rheumy said he’d put me on a small dose of Amitriptyline which would help me sleep and hopefully help with the fatigue as well. He said it can cause a dry mouth and drowsiness so has stated I take it at night. I took the first one last night. I have a horrible taste in my mouth this morning and feel more lethargic than usual. I know it is only the first dose, but I’m just wondering if anybody else is taking it and whether they have noticed any side effects.
I didn’t sleep well last night because it was very windy and I was very worried about a wren’s nest I discovered in a hanging decorative coconut bird house outside my shed. We can’t see into the nest because the front (all mossy) comes up beyond the hole and there is another entrance hole into the nest. We have seen an adult fly in and out regularly and 2 days ago I heard light pecking sounds from inside the coconut so I wonder if chicks are hatched. Anyway it is swaying a lot in the strong wind so I’m worried about them. I don’t suppose the Amitriptyline will help me with that! 🙃
Any feedback about the drug will be much appreciated.
Hoping you are all keeping safe. 🤗😘
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Spotty-ewe
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Hi, I got started on this about 2 months ago for pain which was keeping me awake. Fortunately I've not been left with any unusual taste and my extreme night thirst isn't any worse. What I have noticed though is that I am constantly having weird dreams and I do feel very lethargic in the morning. I presently take 10mg and my rheumatologist is reluctant to make any changes in the current climate
Many thanks for letting me know how you are getting on with the drug. I can’t usually remember my dreams so it will be interesting to see if this makes any difference. Has it helped with your pain? I hope it has. Best wishes,🤗 Spotty.
Yes it has, it was mainly my shoulders and hips, still have the occasional bad night but I would definitely say there's been an improvement. Hopefully you will have the same results......minus the dreams 😁
I asked "Am I right in thinking it helps to take amitryptiline earlier in the eveing to avoid the hangover feeling? Any other tips?"
One friend said:
"Yes if you do get that hang over feeling take it earlier in the evening nearer after dinner. What dose are we talking about? The larger the dose the earlier you need to take but be aware it can make some people feel unsteady after taking it so it's a good idea to take it after food but also when in a safe place even if they have to go to bed early"
Many thanks for asking for me Pro, I really appreciate that. I took it late last night (about 10pm) so will try it after dinner tonight and see if I feel less groggy in the morning. The Rheumy told me it is a drug often used for anxiety/depression but my dose of 10mg is too low to work that way which is just as well because I’m already on Citalopram for anxiety. 😆 My balance is rubbish so thanks for the tip regarding that too. All very helpful. 👍🏻👍🏻Thanks Pro. Hope you are keeping safe and well.🤗
Hello, Spotty. I’ve been prescribed amitryptilene a few times over the years and it always wipes me out. The first time was for chronic pain and I think I was prescribed 50mg! Far too high for me and I was in bed most of the next couple of days. Then I was given it for ibs pain at a much lower dose, 20mg I think, and even at that I was no use the following day. It got to the point when I had to be in agony to consider taking it. As I’ve got older the ibs seems to have resolved, thank goodness ( and I hope I’m not tempting fate) but I would be very wary of taking amytriptilene on a regular basis.
My feet are always freezing so can’t really advise on anything to help you, I’m afraid.
Oh goodness, 50mg does sound high! I’m on 10 mg and maybe if I take it after dinner as PMRpro’s friends suggest I’ll manage to tolerate it without the morning grogginess. I’ll try it. Interesting that you can take if and when you need it. That might work for me too once things settle down - I’ll ask the Rheumy once my feet feel more like normal.
Good to hear your IBS has resolved with age. Thank goodness there are some benefits to getting older. 👍🏻😆
My feet always used to be freezing too so not sure why they changed to the other extreme unless it is one of the other medications I’m on. 🤷♀️
I take 150mg but only when the pain is severe. I'm also taking pregabalin150mg 2× daily and venlevaxine for neuropathy, fibro and bowels and severe arthritis plus other medical conditions. But I always feel awful the next day and cannot do anything. As someone else said these doctors need to try some of these drugs the prescribe us. Plus the dry mouth is awful but still doesnt knock me out . I really cant remember when I had a good night's sleep.
So sorry to hear you don’t sleep well Kane and that the Amitriptyline doesn’t give you a good night’s sleep especially when such a high dose. I’ve only had 4 doses so far but have noticed a bad taste in my mouth more than it being dry, and taking it early has improved the grogginess the following day. I’ll see how it goes.
Many thanks for your input and experience. Take care. 🤗
In the past, for migraine prevention, I was on 5mg to 20mg of amytritaline and had no ill effects and had great sleep and also saw a great reduction of anxiety at that time. I no longer take it for I stopped to see if my pfo closure worked to prevent my migraine with auras and as I have not had an aura since a few weeks after the closure I found no need to use it. However, I will not hesitate to use it again if my post stroke central pain were to get worse. Good luck I hope you find relief too.
That is all very positive thanks Roarah.👍🏻 I used to suffer migraines too but they have disappeared since being on Hydroxychloroquine so I’m assuming it has helped in that department. With Amitriptyline as well now, hopefully I’ll never have one again.🤞🤞 I hope it helps with my feet but it’s so good to know you had no problems with it at all and would use it again. Hoping you never do need it again though. 🙏🏻 Keep safe and well. 🤗
Years ago - before this diagnosis, I was prescribed it to help with migraines. I used to take it after my evening meal and was then ready for bed around 10. I did sleep well with it. It did not help me with migraines however. BUT , it is habit forming. If I forgot to take it, I struggled to sleep. Eventually I came off it, but had to slowly wean off it and and then get used to less sleep....
That’s worth knowing Sasha. I’ll discuss that with my Rheumy next time I speak to them to see how long I need to be on it when it has addictive qualities. Do you recall what dose you were on? Evidently 10mg is low, so hopefully I won’t get dependent on it. 🤞 I’ll ask anyway. Thanks for that.
Think I started on 5 or 10mg and ended up on 25mg to see if the migraines reduced. Noticed sleep effects immediately and that in itself was addictive .... don’t recall any other side effects. You can’t mix with alcohol tho .... 😉
Thanks Sasha. I can’t drink alcohol anyway due to a kidney problem so that won’t be an issue. Looking forward to blissful sleep. 🥱😴 Thanks again. Take care. 🤗
Hi spotty, I've taken Anitriptyline for years and been battling with a very dry mouth for ages now!. I've been taking 25 mg !. It's a very effective drug but do watch out for the lethargy in the morning but it will fade as the morning progresses. You can experiment with taking it at different times in an evening to help this. It can also take a while for our bodies to get used to it so persevere if you can!.
Funnily enough I've had to SOS my pain clinic for extra help and they've switched me over to noratriptyline a similar drug to Amitriptyline so that's another possibility of you really don't tolerate the side effects. I'm trying it now and hope I tolerate it. It's always a worry for us. Hope the new Rheumy was nice, good way to get a second opinion!.
Do hope it helps your sleep and burning feet. Nothing worse than being so disturbed at night.
Good luck too with the nest. Your really having to watch the wildlife aren't you?.
Many thanks for your help and suggestions Misty, I’m very grateful. Sorry to hear you’ve needed 25mg for years and that you’ve had to start an alternative now. I hope it works out for you. 🙏🏻 Yes, I’ll give this a week or so to kick in and for my body to adjust and then see how it goes.🤞 It was a phone appointment with the new Rheumy so a bit weird especially as my hearing isn’t brilliant and he had a foreign accent which made it harder. I’m surprised he hasn’t referred me to audiology! 😆
Signed up to BTO now - thanks again for that - and hubby is enjoying the surveys etc. I read that wrens take much longer than the dunnocks to fledge, so I hope and pray they’ll manage in the swinging bird house for days to come. 🙏🏻 I never expected it to be used! The babies will definitely be rocked to sleep!🥴
Keep safe and well yourself Misty and I hope you enjoy the bank holiday. Hubby’s birthday Sunday so I’ll have to cook him something special at home and owe him a meal out when things improve.
Hi Spotty, Sorry I cannot be of help with your new medication, I just wanted to wish your hubby a happy birthday, and read you have a new brood in the garden. Your, "B&B" is open for business.. Have a blessed weekend, and a scrumptious dinner with your hubby. Let us know how you get on with the medication, and I love your photo, all the latest from the runways are sporting these new duds.Xxx Much love, peace, and my blessings to you and hubby. Thestormy sunshine
Oh thank you Stormy.👍🏻 It must have been one of the little birdies that told you Hubby has his birthday tomorrow. 😆😆 Yes, the wrens are being rocked in the decorative coconut bird house they decided to build their nest in. Mrs Wren is back and forth a lot even in this blustery weather so I assume the chicks have hatched and are wanting food. I read that wrens can lay up to 8 eggs so there might be quite a brood in there being rocked to sleep. 🐣🐣🐣🐥🐥🐥
I’m feeling less groggy today as I took the medication much earlier last night, so hopefully I’ll manage to tolerate it and feel the benefit of it over the next month or so. 🤞🤞
Glad you liked the photo - a bit of fun.
Thanks so much for your love, peace and blessings and the same back to you, your hubby and of course dear Storm.🙏🏻🤗 Spotty Xx
Many thanks spotty for your lovely message and I hope your husband enjoys his different birthday. We're all having to adjust to this but it's helpful making future plans of outings or trips. I'll be doing the same next month for mine. I do think people have liked the more personal birthdays but not the travel restrictions this virus has brought. So pleased you signed up to the BTO. I've had to cancel that one as can't do it every week at the mo.
I do hope the Amitriotyline helps. I'm about to try my new one. Do persevere as its worth it to get sleep!. I've got a long standing nerve pain problem in my right leg and can't have injections so needed treatment help till I can. Coukd yours even be EM?. I did wonder.
Enjoy watching and mothering the birds, your doing such a great job and keep us posted on the drug effects as I will too. Keep safe and enjoy bank holiday as much as you can. Xx
Sorry you had to cancel your BTO survey, but it is difficult to fit everything in. Time continues to fly by at a great rate despite lockdown. Sorry to hear about your long-term nerve pain problem in your right leg. I hope you get relief with your new drug.
I don’t know if I have EM. I’ll discuss it with Rheumy at my next appt in 6 months time, if they stick to 6 months. My last appt (by phone) was just over 12 months since the previous one. Funny 6 months!
Good luck with your noratriptyline, and I hope you have a great weekend Misty.
Thanks spotty for your lovely message. Have you tried Amitriptyline yet. I took 10 mg of noratriptyline last night and had no side effects but just couldn't sleep because of the pain!. I can increase it to 20 mg which I'll do tonight as had been taking 25 mg of Ami. I always start low with any new drug because of interactions and side effects. I do hope it helps you sleep. Shoukd do.
If your struggling always ask the Rheumy clinic if you can go on cancellation list. They're always late with appts and the trick is not to let them see you can manage a year when really you can't!. The appts will just get later and later otherwise!.
Hope your lovely birds are behaving and your husband is enjoying his birthday.
Oh no Misty, I’m sorry to hear you couldn’t sleep for the pain. That is rough. I hope the 20mg does the trick tonight.🙏🏻🙏🏻
I’ve taken 3 doses of Amitriptyline now. I was a bit late taking it the first night so was like a Zombie all of Friday - where did that day go? I took it at 5.30pm Friday night and was really good all of yesterday 👍🏻, but although I took it at the same time last night I felt really groggy again this morning.🥱 However I have slept well with it and I managed to make hubby a big Sunday lunch for his birthday which was a treat as we rarely eat that sort of meal, and after my 1 coffee per day I perked up a bit and we walked through the woods in the village this afternoon and back again (about 3 miles). Despite them felling nearby (they don’t work weekends thankfully) the birdsong was amazing and we saw 1 red squirrel which was lovely. So yes thanks Misty, he’s had a lovely birthday.😁
We do have a Rheumy helpline and I’ve used it a few times including in September when I had a bad flare. But I’ve never thought of asking for a cancellation. Good idea.👍🏻
Thanks spotty for your lovely message and so pleased despite everything you and your hubby coukd enjoy his birthday!. Very special to see the Red Squirrel and go for that nice long walk!. I took the decision to change the BTO bird survey because it was a big committment , weekly for a year and they wrote back saying would I like to know about other shorter surveys so I've said yes. We did a tawny owl one which was lovely. We're also just going to enjoy the birdsong and wildlife in our garden like you. Makes it much more enjoyable!.
It's a case of persevering with Amitriptyline to find the right time to take it and your body will get used to it so hopefully the grogginess will improve!. It might also take less time to wear off too. My mum has found this. We need nerves of steel with trying these drugs!. Do you generally find you tolerate them ok or have you had lots of problems?.
I slept better last night thanks for the 20 mg!. Still very disturbed but I know it will build up!. Bit more human today, we're nothing without sleep!. Glad you have a Rheumy nurse helpline. I've found mine invaluable and it's quicker access to the Consuktant.
I hope you have a happy Monday now and get more Amitriptyline benefits. Keep well and safe Xx😊💕😊
Yes, we were pleased to see the red squirrel which at one time were so plentiful but are becoming rare now. So sad. With Some of the woodland being felled at present, during the breeding season, this isn’t going to help matters. But I have our Local councillor on the case now, so hopefully it will be stopped until the breeding season is over.🤞
Glad to hear you were offered shorter surveys by the BTO which are proving more relaxed and enjoyable. Hubby is doing the weekly survey at present and enjoys it. He likes to stop and stare- I haven’t the time.😆
I’ve had 4 doses of the Amitriptyline now and feel much better today than yesterday. I hope I’m getting used to it now but my system often takes ages to tolerate or reject drugs. I’d been on Terbinafine for a month before a rash started which then escalated (after a live vaccine) into a head to toe rash. That’s when they discovered, after umpteen tests, that I had SLE. So I’ll keep an eye on things.
Very pleased to hear you slept better last night on the 20mg. 👍🏻Hopefully it will improve even more as time goes on.🙏🏻
Take care Misty and I hope the noratriptyline relives your pain quickly. Hugs and best wishes 🤗😘🦔🦡🐝🕊
Thanks spotty for your lovely message. It's wonderful to see the Red Squirrel as they are so endangered and they've got you as a great advocate battling your local council on their behalf!. Aren't the red's a bit more controversial though than the grey's or is that a myth?.
I'm so glad your hubby is enjoying doing the survey. It's ideal for people who have got long days to fill in lockdown and chaps have less to do than ladies don't you think?. Just don't know where our days are going!.
I'm pleased your tolerating Amitriptylibe so far and you must be relieved too!. I do hope it helps your symptoms, good sign your beginning to feel better. We have to be so vigilant with ourselves as we can react later to drugs etc because they have to build. Not a nice experience with the rash after that live vaccine!. I've found I've reactrd to both the flu jab and pneumonia jab this last year although their not live ones!. Our immune systems just go into overdrive I think !. What kind of lupus treatment are you on?. That must have been a shock diagnosis for you!.
I'm just wondering if you saw happytulip's post about the shielded community not being forgotten and what you thought about the media coverage of us?.
I'm on day two of 20 Noratriptyline and I slept even better last night and yesterday morning had pain benefit. I'm finding too the dry mouth isn't as bad either so feeling pleased. Noratriptyline isn't used as much as Amitriptyline by gp's so you might like to note it in case.
Do take care in the sun this week, mini heatwave suddenly!. We've been lucky with the weather easing lockdown a little for us.
Thanks for your lovely remarks about me battling for the red squirrel. They are our native species of squirrel and the grey was introduced by the Victorians. It can carry a virus to which the reds have no resistance so a whole population of reds can be wiped out in a few weeks. We think this is perhaps what has happened here as we used to see many different reds per day at our squirrel feeder, but we haven’t seen any in our garden for years. The one we saw on the walk is the first I’ve seen in a couple of years, the last was hanging from the mouth of a stray cat. 😫 The local councillor is still waiting for a reply from the Scottish Natural Heritage who have proved difficult for him to contact with their offices being closed. Fingers crossed he manages to put a stop to the felling but acres of woodland have been cleared already.
Hubby had open-heart surgery 2 years ago and is now awaiting ablation which has been put back because of COVID19. So I’m pleased the survey makes him slow down and relax because he’s been out fitting gabion baskets into the side of the burn nearest the house where the ground has been slumping, and filling them with rubble and rocks given to us by 2 neighbours. Of course he’s had all the collecting and carrying to do on his own with his trailer because the other men can’t help him and keep social distancing. He’s done a fabulous job but I worry he overdoes it. So getting him out for a walk or doing the survey is great. Of course he observes the birds while he’s working in the burn too which forutunaltely due to all the dry weather we’ve had is low at present so only around his ankles. But it is quite muddy no doubt due to the erosion over the years. It is a job that’s needed doing for a long time to stop the house subsiding, but I do worry he tries to do too much.
Yes, so far so good with the Amitriptyline but I have noted the Noratriptyline in case over time I find I can’t tolerate it. So thanks again for that. I’m so pleased to hear you are beginning to feel the benefits of it. I hope it continues to help.🙏🏻
The rash I had from the Terbinafine, exacerbated by the live vaccine, flared in Vancouver Island where our 3 weeks holiday were spent consulting doctors and dermatologists as the rash grew and spread. It was unbearably itchy and I found lying in a bath of cool water with bicarb in it helped. I drank no end of camomile tea and spread honey all over myself before each bath. This meant we couldn’t stay with friends for one of the weeks which had been planned and the medical bills escalated. Thankfully we got most of it back from our insurance, but what really rubbed salt in the wound was meeting a Canadian lady who said they were just back from UK. Hr hubby had leukaemia so couldn’t get travel insurance for health. He got a chest infection in UK and had to see a doctor and get antibiotics. When he took out his credit card to pay he was told there was no charge! 🤦♀️
Sorry for going on too long. I hope you enjoy the good weather without any ill effects from the sun.🤞 But even indoors is nicer on sunny days than on wet dull days. I’ve some sewing to get on with as well as the usual chores.
I am taking 30mg of amitriptyline a night and have been for about 18 months now.
I suffer with headaches/migraine/ice pick headaches etc with myalgia behind my eyes and in my ears. Despite being on 3g of MMF, 400mg of Hydroxychloroquine and 50mg of mepacrine a day, I was still getting headaches and flashes of pain that were very intense.
I decided that this was impacting on my quality of life enough that I wanted to try the amitriptyline. Dr Kaul in London suggested it.
I had a scary experience driving one day where the pain shot through my eye ball, like a knife and my instinct was to shut my eyes tight but I was driving. It scared me.
I wouldn't say it worked instantly. Like most other drugs I have taken, it takes a while for me to notice a difference.
Maybe around 3/4 months?
I do still get headaches but they are less severe and they do not last as long. When they happen, they will now usually go with paracetomol / ibuprofen / frovatriptan - which never used to touch my headaches before. So I think, I am actually taking less tablets that I was before when nothing else was working and I was just taking paracetomol every day etc.
I guess as it is for nerve pain, this might be the answer to your burning feet?
I haven't noticed any side effects, but then when you are on such a mix - 12 tablets a day at the moment - it is hard to say if it's my lupus/sjogrens etc or side effects from the drugs?
At least it is a drug that if you try 10mg a night and you don't get on with it, you can stop taking it, I don't think it's an addictive form of pain relief at that level, that you would need to wean your self off.
Good to hear from you and glad you liked the picture.😁
Pleased to hear the drug has benefited you although that incident when driving sounds very scary.🥴 The Hydroxychloroquine has helped my headaches and instead of developing into a full blown migraine they are now shifted by paracetamol which, like you, never did anything for me in the past.
From your experience it seems I should stick with it for a few months to see if it really does anything for me or not. So unless I have any side effects I can’t tolerate I’ll do that. 👍🏻 Yes, I think they are putting the burning feeling in my feet down to a neurological problem. Fingers crossed this sorts it out.🤞 Thanks for your Input Wendy and for the reassurance.
Hoping you are keeping as well as you can be and keeping safe. 🙏🏻 Take care. 🤗😘
Hi HT. No I haven’t looked up EM as nobody had ever suggested it. Thanks, I’ll have a look.👍🏻
I did wonder about the ice packs which is why I wrap them in a towel so the coldness takes a while to come through. Very soothing and lasts all night. Do you still get the burning sensation or has the pregablin stopped it?
Thanks for your kind wishes and I hope you are keeping safe and well. 🤗😘
I found I was worse last summer with the burning feet so I think heat makes it worse for me too. That’s an interesting trigger - I’ll bear that in mind and make sure I’m wearing thin socks too because at present I have no idea what triggers mine.
I used to have cold feet all the time, even in hot places like Greece, and the toes were always blue which made them look dirty. So embarrassing. So this sensation of hot or burning feet was new to me when it started about 18 months ago. I wondered if it was a medication I was on, but it is maybe another reason to do with the progression of the Lupus.
The complications I had with amitriptyline were tachycardia, constipation and weight gain. I tried duloxetine and it worked really well but have me horrendous vertigo. But pregablin works a treat with inside effects. Everyone is different so it's just about finding out what works for you.
I tend to find mine gets worse at night and when I elevate my feet when I get into bed.
If it is EM, which is more common in lupus than many are aware, it might come and go in flares similar to when you have a lupus flare. Mine is made worse pre-menstrally, by heat and by stress.
I think LUK might have done a leaflet about "lupus and the feet" although I might be wrong.
Very handy to know thanks HT. I’ve gone through the menopause but I do find heat and stress make it worse and I notice it most in bed and am forever seeking cool parts of the bed to soothe them. I’ve noted how the various drugs affect you in case I follow suit, but as you say we are all different so perhaps I’ll manage on Amitriptyline.🤞 I’ll check for the Lupus UK leaflet too.
Deepfreeze gel or Dermacool can give very temporary relief I’ve found.
EM isn’t a condition most doctors know much about, or have even heard of. It would probably only be diagnosed if your feet/ soles are red, hot and swollen with the burning pain. But the crossover with EM, Raynauds and small fibre neuropathy is one I’m personally very familiar with and how it sucks!
Amitriptyline is very bad for sicca and I had to stop it for this reason in the end. Eventually I needed it at ever increasing doses to have any effect on the pain - this made it unsustainable!
I have severe Raynauds so assumed my hot feet and hands were to do with it or the SLE. 🤔 Now it seems it may be EM. 🤦♀️
Many thanks for your experiences Stalwart and for the info regarding Deepfreeze gel and Dermacool. I’ll see how I get on with Amitriptyline’s siccative tendencies. All very helpful, thank you.🤗
Wonderful discussion, glad you posted SE 👍😍. Can’t add much to the great replies you have already, but, I’ve been & still am longterm on amitrip & we’re reviewing my meds for this sorta thing...so I feel the urge to join in, 🤷🏼♀️ for what it’s worth:
I’m 66 & been managing progressively severe RP + peripheral neuropathy (PN) since childhood secondary to infant onset Lupus, so management has evolved over the decades inc self help techniques. Simultaneous EM joined the party in my 40s. My versions of all 3 conditions overlapping/simultaneously 24/7/12 (RP, PN & EM) feature dreadful burning. The distinctions being:
My RP-related burning occurs relatively briefly as my blue&white RP stages shift into better blood circulation with warming up. includes redness
My EM-related burning occurs in a constantly repeating 24 hour cycle, almost like clockwork no matter what season we’re in, how severe my other illness is etc etc, BUT it can start earlier in the day if I’m doing any weight bearing that’s even a wee bit more active..and when the ambient into the 20s
My PN-related burning is constant 24/7/12 alongside the usual PN signs/symptoms all AID PN patients are prone to (my medics say my version is exactly like diabetics‘ especially, ie progressively severe numbness, pins & needles etc etc) and over my life time has relentlessly increased..
SO obviously, my EM & RP do happen together eg my soles & palms & my ears can be bright red & burning with EM while the rest of my hands & feet are white & freezing with RP
MEANWHILE my PN burning is always at highest degree of severity whether I’m in the burning red part of my 24 Hour EM cycle, or just All white due to my RP
So, of course, treating this mix is a nightmare. Over the decades my medics & I have conscientiously tried out various treatments, some disastrous ie made one or the other condition permanently worse, some totally ineffective, Some helping enough to continue longterm. If I’ve learned anything, it’s that treating & caring for simultaneous cases like mine is a minefield married to a nightmare...and Complementary therapy + self help techniques are life/sanity-saving alongside whatever meds your trying/on long term. Nothing works for every patient, partly cause the therapeutic meds we take for our other immune dysfunction illnesses get involved in this mine field nightmare
Apologies for painting such a grim picture, but after decades of this, at 66, am feeling grim cause my version is so severe despite relatively effective treatments...anyway, here are the longterm treatments am on specifically for each condition:
RP: nifedipine makes my EM a lot worse permanently, so I’ve been on low dose losartan for several years..which seems to only slightly cause worsening of my EM
EM: nothing so far has helped with this except lifestyle techniques...it’s diabolical
PN: The neurosurgery this time last year triggered a CONSTANT increase in this, especially in my feet: 24/7/12 even more severe numbness + burning even when my feet are white with RP. Since 2011, i have been loving 20mg amitrip nightly with no apparent side effects (was put on 20mg amitrip after a Gyn injuring during a botched colposcopy triggered a whole new world of persistent neuropathic pain). At my March 2020 rheumy review, we discussed what meds could possibly damp down this even more nightmarish PN in my feet without triggering trouble re my lower GI (you probably recall I have organ failure down there + severe chronic obstipation etc) and we decided: HEY let’s try 30mg amitrip...to be safe we first tried a month of 25mg, and now am in my 3rd week on 30mg...like someone said above: am giving this a few months before expecting signs of effectiveness, but HURRAH: so far am noticing nothing neg happening due to this trial
OH DEAR 🤦🏼♀️: sorry for all the 🗣🗣🗣🗣🗣...but maybe something in there can be useful to you or others eg help them makes sense of this PN/RP/EM trio of goblins...it’s taken me YEARS to figure out how to differentiate & target management at them as relatively effectively as we are...
hope you’ll keep us posted on this...am sure that MANY folk now + in the future will find this wonderful discussion & any follow ups you give very helpful
Thank you So much for sharing your experiences of RP, PN and EM, Coco. What a toxic cocktail! 😩 I’ve only been diagnosed with RP on top of my SLE but it sounds to me from what you’ve identified with each condition that I might well have EM too.
I get shivers up and down the outsides of my legs and occasional numbness, but although the Rheumys listen and don’t poo poo what I’m saying, they never offer any explanation for these sensations, just as they haven’t for the hot or burning feet and palms. Because of that I assumed it was part of SLE or RP which they already know about . But now that you’ve provided a clear and concise difference between the redness/burning associated with RP, PN and EM I can identify with the EM too.
I also suffer profuse sweating during enduarance type exercise that persists for more than 30 mins eg a long walk, a dance class, or digging/weeding in the garden. Do you experience this and if so which condition would you put it down to?
I suffer with angina and occasional excruciatingly painful coronary artery spasms (which I read are linked with RP) for which I’m on daily aspirin and carry GTN spray and fast-acting verapamil, so I had put the sweating down to my heart or perhaps one of the medications I’m on. But I’m now wondering if it is linked to one of these conditions. I’ve always said my thermostat is broken as I can’t tolerate very cold or very hot conditions, which I assume is because of the RP.
I’m 65 in 6 weeks time, so I’m not too far behind you Coco.😉 I’ve found your input most interesting and very helpful. Thanks again and I’ll keep you all posted on how it goes with the Amitriptyline .
😆👍 I love your: ‘thermostat is broken’ descrip! 😉 I recently said to my wonderful long time rheumy: EM is like RP gone BONKERS! And she nodded! I also said: science really doesn’t understand EM does it: she nodded again.
My EM was diagnosed by a prof rheumy lupus & RP expert at another Univ hosp a year or so before I first saw my current rheumy whose expertise is SLE + CTD...although I don’t think of her as an EM expert, she accepts my diagnosis & is extremely attentive to minimising EM side effects from the treatments we try for RP....most medics react like her...so, I would tend to expect most NHS medics to either look blank when you mention EM, or not use the term EM in response to the EM cycle you describe, but, if they ARE good medics, they’ll still take your EM-like manifestations into account & treat your RP cautiously.
Saying that, I also have CRPS which used to go ballistic back in the decades when my EM was less well managed. The Eminent CRPS expert prof ortho surgeon my pain consultant referred me to was amazingly knowledgeable about the ins & out of EM...of course I fell for him 🥰. And my long time GP finds my EM so exciting that, over the years, she has always tended to show-&-tell my EM off to any trainee medics sitting in on our appts, none of whom have ever heard of EM (I take pics of any visible symptoms, so she makes me whip out my ipad...medics always look horrified by my EM pics...even physios go 😱...so funny to see experienced physios freak out 😆: gotta grab my kicks where I can 😉)
I’ve been reading the officially published literature on EM for 10+ years now, and it’s clear to me that:
1. Genuine EM experts do not hesitate to say they don’t understand it well enough yet to compose official care guidelines & set diagnostic criteria.
2. Every patient’s EM is slightly different, as with Lupus....but some patients do identify with some other patients’ characteristic EM symptoms pattern. And one thing we all seem to have in common is redness, burning, often some degree of swelling
Also: you’ve hit the nail on the head: by factoring in you heavy sweating (could be hyperhidrosis?) + angina + spasms, you’re got onto the very important aspect to this subject I’d decided not to delve into cause my reply was long enough already, ie in my experience, we complex multisystem illness patients do best to taken into account our other characteristic manifestations + their treatments...cause ALL this stuff overlaps + influences flippin everything in 1 way or another... 🙄 so BORING to be having to play True Detective day in day out re one’s own bod, but 🤷🏼♀️ WE do best to see ourselves holistically, even though mostly the health establishment tends not to 😏
Eg although not all EM patients report the prob, i have noticed that characteristically heavy sweating does crop up in discussions, so it’s gotta be a bit relevant to this subject & needs to be a factor when considering this with your medics. So far I ‘think’ my sweating thing isn’t excessive (I have anhidrotic skin, so maybe that counterbalances it), but I have a Hypermobile friend whose heavy sweating was severe enough to qualify her for surgery on the NHS. NHS Scotland’s hyperhidrosis info seems among the more serious & in-depth, so here’s the link:
Thanks for another very helpful reply Coco.👍🏻👍🏻 Thanks too for the link for hyperhidrosis which is very interesting and some of which I can definitely relate to. My sweating does seem to be related mostly to exerting myself but has also occurred if a room is too warm for my liking. 🥵 I see some antidepressants can cause it and might discuss this with my GP as I’ve been on Citalopram for 18 months now due to on-going anxiety caused by a publisher who took on my book almost 2 years ago but keeps stalling and delaying getting it into print which is extremely embarrassing when updating interested parties. Indeed I have lost several elderly supporters over recent years including my mentor who was in his 80s. 🥺
Anyway, it is all very helpful and as you say an holistic approach needs to be taken including things like the anxiety I’m experiencing (nowhere near as bad now thanks to the Citalopram) which also impacts on my general health.
I was tickled by the idea of you being the subject of a ‘show and tell’ session with the medics. 😂 So funny. But you are also providing a service in as much as you are making them aware of EM and with illustrations.👍🏻 I don’t get the swelling, but the redness and burning I can relate to. As you say we are all different and of course I might not have EM at all. I’ll discuss it with the Rheumy at my next appt in 6 months time by which time I’ll definitely know whether the Amitriptyline has helped or not.
OH NO 🤦🏼♀️: that’d definitely trigger anxiety...been through the mill with publishers (have worked with my sister who writes) ....and it’s all even tougher cause on top of the strain of illness, COVID...well, am V glad you’re here! 💐❤️🍀
Remember that pain is sensation of information being passed to the brain as pain. So to really block pain, you need to change the biochemistry of the brain. Some drugs cause immediate and temporary changes (e.g., opioids) and others take a while to adjust your chemistry and down-regulate the way you feel pain. Anti-depressants can actually be used to reduce pain, but take longer to work than opioids (i.e., you need to be on them longer before the first benefits are felt, but they don't have the addictive risk of opioids).
I had terrible fibromyalgia, stiff and in pain, associated with my lupus, and the doctor put me on Cymbalta (duloxetine) another type of anti-depressant. I was skeptical at first, but after a few weeks, it really worked. In fact, in some cases, it has been shown that a course of this med can permanently resolve fibromyalgia. It somehow re-calibrates the brain in terms of how it perceives pain signals, which it did for me. I have not had a really serious fibromyalgia pain incident since then (and no longer need to take Cymbalta).
So you need to give it a little time to see if it works, and if it doesn't, ask the doctor if you can try a different one. Cymbalta is prescribed for neuropathy pain, which could what is happening in your feet) so you could ask to try it if what you've been given doesn't work well for you. The immediate source of the pain (vascular, nerve, muscular) is often hard to determine until you've tried different things to see what works.
Thanks for the clear explanations Aimee.👍🏻 I’ve made a note of Cymbalta/duloxetine in case the Amitriptyline doesn’t work for me. But from what you and a few others have told me I’ll need to give it time to see if it does or not. Thanks again for the explanations which are very helpful.
I hope you are keeping better now with the Cymbalta.🙏🏻 Take care.🤗
Actually opioids can be used to treat any kind of pain BUT they are addictive and dangerous and you need higher and higher doses over time to be effective. They are like using a sledgehammer when a flyswatter will do.
They are not the first line of defense against pain for chronic pain for many reasons. I wasn't suggesting opioids, and a responsible doctor would never prescribe them in a case like this. They should be reserved for serious acute pain episodes (surgery or serious trauma) for a very short period of time, or at end of life illnesses when nothing else will work. Most responsible doctors won't prescribe them for anything other than that these days.
Opioids do have their place when prescribed appropriately and to patients who understand the risks.i suffer from chronic inflammatory pain and chronic neuropathic pain. I also suffer from vascospastic angina.
I take pregablin which is a controlled drug, I also take daily morphine, another controlled drug and diazepam when needed, a benzo, which is an addictive drug. Yet my dosage of these medications has not increased in 5 years. The only extra medication I have is an annual infusion of IV lidocaine.
After working for over a decade in Emergency Medicine I saw many patients being managed on regular opioids for pain. Patients and their doctors can be responsible and need to work out what works for each individual.
I agree that opioids in an acute setting for acute pain is effective although nerve blocks are a far safer option now. For example an elderly patient with a #neck of femur might have been given 5-10mg IV morphine, but now a nerve block using lidocaine is possible which is far safer for an elderly patient.
I think sometimes people forget that codiene is an opioid derivative and is regularly prescribed by GPs for chronic pain. You can even buy it over the counter in the form of co-codymol.
What I am trying to say is that in some circumstances some people with chronic pain have to be on a cocktail of highly addictive medication, like me. But fortunately I don't build up a tolerance or have an addictive personality. And I am lucky to have a fantastic Pain Consultant.
Without him I would be on a much high dose of long-term steroids which would have even worse implications for my health.
That’s a good point ht, where opioids can be addictive , that doesn’t mean for everyone, I used to have diazepam and never did get addicted and tramadol have helped with pain but go took them off her prescription list saying they don’t like prescribing as addictive. On the other hand I don’t like taking tablets that don’t help or that give horrid side affects which was alternative. I also have a high pain threshold and don’t like taking drugs unless really no option so never took routinely so with severe pain easing at times so did stop taking. Everyone is different and gps, need to look at that rather than just saying they’re addictive, especially when you have no choice but to take,
Duloxetine made my mouth so dry my dentist was horrified and did nothing for my pain - but gave me terrible gastritis. But also, unlike Amitriptyline, many people find it terribly difficult to come back off if it doesn’t work. It took me 3 attempts. Unlike fibromyalgia - neuropathy isn’t caused by the brain’s heightened pain receptors - it has many causes, all biomedical. So for those with an inflammatory small fibre neuropathy these anti depressant meds don’t do much. Steroids really helped mine but obviously they weren’t sustainable either and opioids have never touched it.
I started off on 10mg for post concussive headaches in February. I was told 6 weeks to feel an affect and to take a few hours before bed. My GP recommended no later than 8pm (from personal experience 😂). I’m a pretty early sleeper and found I was still really groggy doing that so I now take just after 6pm. I’ve just been told to increase my dose to 20mg since my headaches continued and since then I’ve noticed even taking them at 6pm I’m still really groggy the next day and I’ve noticed an increase in dry mouth (I do have issues with that anyways). With the higher dose I’ve had a bit of a lack of appetite, but I don’t know if that’s just me (it sometimes happens) rather than the amitriptyline.
Sorry to hear about your post concussion headaches. That sounds awful. Thanks for telling me about your experience of the drug and how it has affected you. 👍🏻 I was warned it would make me drowsy but he didn’t say for how long each day. I’m only just starting to feel ‘with it’ today and it was 10pm I took my first dose last night. I took it at 5.30pm this evening so I’ll see how that goes.🤞
I suffer with a dry mouth too so was a bit concerned when the Rheumy said that was another side effect. Anyway, I’ll see what happens. Thanks again for your input. Take care Marosea.🤗
Thanks Spotty-ewe 🤗. 6 months and counting of headaches after falling and splitting my head open is just my luck 🙄. I’m pretty sure that on the 10mg I was ok within a week or so taking them earlier once it got in my system so hopefully it won’t take too long before that feeling goes (it really is a horrible feeling isn’t it?). Fingers crossed the dry mouth doesn’t affect you, or not too badly at least and that the amitriptyline helps the burning feet 🤗
6 months+ of headaches sounds a total nightmare. I’m so sorry to hear of your traumatic injury which led to this. I wish you all the very best for a full and less painful recovery. 🙏🏻🙏🏻
Hi I’ve been on Amitriptyline for about 7 years - I am on a very high dose - 100mg at night - originally I took it for a painful shoulder but now I take it for insomnia- I never feel groggy in the morning- the only thing I notice is dry mouth and I dream a lot, the detail in my dreams are unreal - they are like movies 🎥 good luck and hope it helps your burning feet xx
Goodness that is a high dose Farmer. That is amazing you never feel groggy with it or have any side effects other than the dreams. 👍🏻👍🏻 I was planning to subscribe to Netflix but I maybe won’t need to now if I get the movie-like dreams. 😂😂 Thanks for sharing your experience of the drug and thanks too for your kind wishes. 🤗😘
I was given Amitriptyline for burning legs which was terrible and much worse during the night. It turned out I have small fibre neuropathy but Amitriptyline didn’t help. I was left with a vile taste in my mouth, weird nightmares and sickness, so I was taken off it. My own GP gave me Duloxitine and I take 3 tablets a day which has really helped. I am fine most of the time now and if it does re-appear every now and then it is only in a mild form and it soon goes away.
I am sorry you are suffering and I feel for you. What is your GP like - is he/she approachable and can you talk to him? If he/she is maybe ask them what they could suggest.
I hope you are soon getting some relief from this horrible burning pain.
Sorry to hear what you’ve been going through but good to know the Duloxetine is now helping. 👍🏻 Interesting you experienced the vile taste too - I’m only on my 2nd dose but have the same awful taste again this morning. My GP is very good and very approachable so I’ll definitely contact her if I find this Amitriptyline doesn’t help me.
Thanks for that Stiff. 👍🏻 Having taken last night’s dose at 5.30pm I don’t feel so drowsy today but I do still have a nasty taste in my mouth and my tummy is a bit upset. Very early days yet, so I’ll see how it goes over the next few days/weeks tolerance-wise, and then see if it helps with the burning as time goes on. 🤞🤞
Thanks for your kind wishes Stiff. 🤗 Same back to you. 😘 xx
Welcome to the party! 🤗 Thanks for asking about last night. I took my 10mg at 5.30pm, slept well and don’t feel anywhere near as groggy today. However I do still have a bad taste in my mouth and I feel slightly nauseous. But I’ll see if it settles down over the next week or so before deciding whether I’m tolerating it well or not.
So pleased to hear it is helping you and with no noticeable side effects! 👍🏻👍🏻 Brilliant.
Thanks for sharing your experience of the drug with us Kat.
I have the same problem. As my pill intake is getting ridiculous I have tried spraying my calves with Magnesium which helps and then I stick half a Deep Freeze pain relief patch on each foot. They work for 12 hours ! My dry mouth, nose and throat are so bad now I just dont want another drug. Best of luck
Many thanks for your tips and experiences. Where do you get the magnesium spray from? I’d like to try that. Sorry to hear about your dry mouth, nose and throat - most uncomfortable.
Hi - my feet burn so badly - I find it incredible that we have so many points of pain ! Magnesium spray is in any chemists, Holland & Barrett and other health shops. I use spray Vit d and b12 as I get heartburn from so many pills ! Good luck - just thought - Deep Freeze do a wonderful ice cold spray but the plasters last 12 hours - very good
That’s very useful information thanks Cas. I was going to put an order in to Holland & Barrett so will look out the magnesium spray and order it too. Thanks again. Take care. 🤗😘
I would report back to whoever prescribed the drug for you as there are alternatives. I wasn’t on it for long because it didn’t agree with me and upset my bowel so the Rheumy switched me to Pregabalin. I was on it for about 2 years and again ended up with severe constipation and other problems that affected my quality of life. My GP took me off it and over 6 - 8 months my bowel has returned to normal and the Pregabalin seems to have greatly improved the cause of my burning feet which I rarely suffer from now. I pray it stays that way.🙏🏻 So do speak to your doctor about it. Good luck.
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