Burnt legs

[Mopsy1950]

Hi one and all haven’t been on for a long time ,a question if someone could answer please ,have had RLS for about 20 odd years now usually control with pramapexal,tramadol and clonazepam,I work my meds to suit ,if been ok will cut down on pramapexal taking a half tab ,and the same with clonazepam so I can up the dose when necessary,but I now have the front of my legs burning right down to feet as though I’ve been badly burnt by sitting in the sun I mentioned this to DR the other day and he seems to think it is part of GOOD OLD RLS has anyone else got this ? he has given me zostrix to rub on apparently numbs the nerves thanks for reading

[Sandie120865]

Have you tried cool packs freeze sprays cold compresses all med free worth a try I found this helpful last summer, also the burning pain, in my cause was nerve pain and did settle down, I take tramadol and naproxen which seem to be helpful at the moment, hope you found some relief from your problems best wishes 👋🏻X

[Mopsy1950 in reply to Sandie120865]

Hi hope you are right about settling down my burning seems to be at night and I think I’d rather put up with that and get to stay in bed rather than walk the floor with my RLS ,DR said it was nerve pain and if it doesn’t settle down he’ll put me on Gabapentin,which I’d rather not have if possible cause I take to many tabs now ,thank you very much for your help

[Hidden]

Hi Mopsy, I too get burning pains down my legs. particularly across the lower part of my left leg. Although I have RLS, I know this is really nerve pain and an MRI showed I have a compressed nerve in my spine.

Last year this got really bad pretty much down the inside and outside of my thigh. I had a course of Naproxen and Codeine Phosphate. It settled down and is now kept at a minimum with Gabapentin.

However, I couldn't say for sure if what you're experiencing is the same because usually it is asymmetrical, i.e. down one leg or more down one leg than the other.

If you have any of the following then it's more like nerve pain than RLS -

Lower back pain or the burning is worse when you do a lot of bending or lifting things.

Pins and needles down any part of your leg.

Paraesthesia, a superficial numbness e.g. I feel like I have socks on even when I don't.

Soles of the feet burning

Any unusual pain or sensation anywhere when you lie on your back and raise a leg whilst keeping it straight.

Alternatively, it might be peripheral neuropathy, i.e. a problem with nerves outside of the spine or a circulatory problem.

If it's really bad I suggest seeing your GP and they could physically check you over, check your spinal reflexes, check leg pulses and do some bloods tests e.g. for Diabetes and take it from there.

It doesn't sound like RLS to me.

[Mopsy1950 in reply to Hidden]

Hi have seen DR he said nerve pain which is part of RSL if it doesn’t settle on zostrix and if this hasn’t settled down in a couple of weeks ,then we’ll try Gabapentin,I also get a sore and tender back right down in the small of the back have had this for years thank you for help

[Hidden in reply to Mopsy1950]

I've never heard that nerve pain is part of RLS. Neuropathy and RLS are different.

If your burning pain is present most of the time and doesn't change at different times of the day then it's more likely to be neuropathic pain, not RLS.

see

clinicaladvisor.com/home/th...

RLS can occur in someone with neuropathy, but in that case they co-exist, they aren't the same thing.

Neuropathy is also associated with RLS in some cases, but then it seems to be secondary RLS, rather than idiopathic (primary).

jnnp.bmj.com/content/72/4/5...

If your DR is treating just the RLS, this might only be part of the solution. If you have neuropathy, I'd say you need to know what's causing the neuropathy not just dismiss it as "part" of RLS.

If you've had RLS for years and only now developed the neuropathy, I'd say it is a separate condition altogether. The way to treat neuropathy is to treat what's causing it.

Gabapentin is used for nerve pain and if it works, great, but you still won't know what's causing it.

[Mopsy1950 in reply to Hidden]

Hi ,have had RLS for years ,and this has only started at night only at first but now even my feet get hot through the day ,also have swollen ankles which with blood test found inflammation so now waiting for appointment for X-rays ,also been going to podiatrist with sore feet ,( I know gets weirder all the time ) thanks for your help will definitely get to the bottom of this

[Hidden in reply to Mopsy1950]

This is sounding quite complicated.

You may have more than one thing going on, but definitely the burning is NOT part of the RLS and Gabapentin won't solve it.

I hope you get a proper diagnosis soon.

[Mopsy1950 in reply to Hidden]

Will let you know ,thank you

[franop in reply to Hidden]

I have almost the same symptoms i.e. burning down the front of both legs and feet drive me mad at night have had this for years meds are---- pregabelin, cloneazipam, duluxiteen, tramadol, sorry to say nothing helps now have to sleep in a different bed to my wife because the heat from her body sets it off or makes it worse I do have trapped nerves in my lower spine and neck also worn joints, arthritis and other stuff all I can say is best of luck in getting some sort relief I haven't found any but I do have a lot of issues

[Hidden in reply to franop]

It does appear the burning is nerve pain in your case.

You don't mention if you have RLS as well.

Duloxetine, Pregabalin and Tramadol can all be used to relieve nerve pain but you say they don't work for the nerve pain.

Duloxetine is an antidepressant which may exacerbate the symptoms of RLS if you have it.

Pregabalin is used to treat RLS, which might relieve the RLS if you have it, but may be counteracted by the Duloxetine.

Tramadol as well as treating pain is known to relieve RLS if you have it, but you say it doesn't work for the burning.

Clonazepam is a sedative and muscle relaxant that might help you sleep, the muscle relaxant may also help relieve any muscle tension in your back leading to the nerve pain. In the longer term it may lose its effectiveness as you build up tolerance to it.

Sorry to hear that this is quite a cocktail that, at least, isn't working for the burning.

I think if I was in your situation I'd go back to my doctor and have a medicine review. When nerve pain is acute a course of an NSAID e.g. Naproxen can reduce inflammation and hence reduce pain.

Additionally, physical treatments, physiotherapy, osteopathy and acupuncture I have found to be of great benefit. There is also advice you can get on a good mattress and appropriate supportive pillows for your bed and I found sleeping on my side with my knees drawn up and a pillow between my thighs also useful when pain is bad.

I would not rely on medicines alone.

If you've had an MRI that shows a problem in your spine, ulitimately injections into your spine or even surgery are eventual options.

[franop in reply to Hidden]

sorry to say but naproxin gave me a massive stomach ulcer so had to stop it, spine to painful for the physical treatments although tried till exhausted also tried the steroid injections till the no longer worked got a brilliant mattress and cool pillows also surgery too dangerous supposedly seen 9 different surgeons all with the same answer. Have pleaded with surgeons that I would rather be in a wheelchair rather than nerve pain still the same answer but thanks for the thought much appreciated.

[Hidden in reply to franop]

Sorry I couldn't help. Seems you covered all the physical options.

Except acupuncture?

Also, have you tried a chronic pain specialist?

[Mopsy1950 in reply to Hidden]

Will see what the X-ray comes up with thought I might do a tape measure on legs morning and night to see if there is a difference did 1 just under the knee last night that was an inch larger than this morning so will do ankles as well today

[franop in reply to Hidden]

been to seven pain specialists also tried acupuncture

[Hidden in reply to franop]

Sorry, I'm out of suggestions.

Just one last one and please don't take this the wrong way and please don't reject it without considering it.

Your pain is real and the causes of it are physcal, but good "chronic" pain specialists use psychological strategies for people with chronic pain. They may not be able to stop the pain, but they he!p to change your experience of it.

[franop in reply to Hidden]

not rejecting anything but have seen the it's not what you cant do but what you can brigade and the teenagers that have never had a bad day in their lives but can advise me how to live with it no more of these please I will live with on my terms thanks I know you are trying to help but I think I've bought the book.

[Mopsy1950 in reply to franop]

Hi sounds really painful is this all down your spine or just lower back ?

[franop in reply to Mopsy1950]

lower, thoracic, and cervical got bad bits all over think I've seen everyone and tried everything mostly down to heavy work all my life I was retired at 56

[Mopsy1950 in reply to Hidden]

Hi mentioned in first note ,have had RLS for over 20 yrs now ,,also take tramadol ,clonazepam pramapexle,

[Hidden in reply to Mopsy1950]

Even more complicated, you have RLS, then you have the burning, which is NOT RLS, now you mention inflammation and your lower leg possibly swelling. The burning then, rather than a neuropathy, might relate to the swelling and inflammation.

[Mopsy1950 in reply to franop]

Hi I have a few issues as well not sure about back but really painful last night usually just tender ,felt as though I was going to lose feeling ended up walking about for a while and some of the good old panadol

[martino]

I suffer from Small Fibre Neuropathy as well as RLS. Burning is very much associated with SFN. Is this a possibility

[Mopsy1950 in reply to martino]

Not sure do you have this burning at different times of the day?

[Sara_2611]

Hello Mopsy1950 I ve never taken those medications-because of the risk of clashing with my epilepsy, & blood pressure tablets. I use Balneum cream I find it quite effective. I must stress & make it clear though that its not for everyone so I cant make any recommendations for it

[Mopsy1950 in reply to Sara_2611]

Hi had a look on google of the cream you have ,sounds different to what I need but if nothing else worked would try ,cheers

[Sara_2611 in reply to Mopsy1950]

Hi Mopsy Thanks for your reply. Ok I'll leave that one upto you .As I said I cant recommend it because it might not be for everyone & could be a risk of having negative effects on the skin . I find it good for me personally . I can however suggest you talk to your doctor about it first should you decide to use it & let him advise you . Hope you find a resolution soon Best regards sara_2611

[martino]

Worse at night. It was diagnosed after a nerve conduction test. I feel as though I have been in the sun much too long.

[Mopsy1950 in reply to martino]

Horrible feeling isn’t it ,I’ve stared getting around ankles when driving now no pain just uncomfortable

[foren6chick]

one word. KRATOM.

it's the only thing that works. non-pharmaceutical. you can use it while you're taking the other stuff. it has been a miracle for me.

[Mopsy1950 in reply to foren6chick]

I have had a little bottle of that a long time ago but didn’t know what to do with it ?

[franop]

Can someone tell me about kratom never heard of this, thanks in advance

[Mopsy1950]

Not really sure about Kratom was hoping foren6chick might reply ,I do a lot of people find comfort from it ,had a look for the bottle I had but it’s gone

[Mopsy1950]

Hi ,no I don’t have those sort of problems now ( thankfully ) as am in late 60 s that burning has now stopped it was weird they gave me Zostrix cream it did help while I had it I now have trouble with one swollen ankle which gets very sore they are trying to find out what that is ,it is causing the one leg to play up so I am up and down with one restless leg they have been good for so long I’d just about forgotten what RLS is after having that for about 20 y ,ah well ,,what about you poor thing it’s not funny having pain life can be cruel ,like you I went to drs for years before one finally found what the trouble was nearly ready to slit my wrists ,got to the stage couldn’t take much more ,,.hope they sort you out .