Painful Burning sensations

I am joining on behalf of my 87yr old sister in law who is not able to come through the Internet. She has been diagnosed medically with RLS & her blood results are all normal. She has tried everything to overcome the extreme burning sensation which is extremely painful at times & comes regularly as she tries to settle for sleep & ends up walking in the garden at 2am & goes all night without sleep. It occurs on the sides of both legs from beneath the knees to her ankles. Can anyone offer help , even having someone to talk to who is unable to sleep. She is otherwise a fit & healthy individual.

[Madlegs1]

I'm so sorry for her experience. Most uncomfortable and scary.

However it really doesn't sound like Restless legs syndrome. Burning sensation feels much more likely to be a form of Peripheral neuropathy.

There may well be some form of deficiency as well- potassium or magnesium. But she should see a competent neurologist to try and figure this out.

A simple test as to whether it is RLS, would be to take a very short course (1 week) of Pramipexol starting at 0.088mg and after 3 days going up to a second pill. If the sensations are relieved by this course of action, then she likely has got RLS.

Another option is whether paracetamol or ibuprofen give relief. If they do ,-- then it is definitely not RLS.

The other thing to check out is whether she is taking any antidepressants or antihistamines, as these can sometimes trigger attacks of RLS.

Hope this gives you something to work on.

I am not a medical expert and my advice is offered from personal experience.

Good luck.

[Hidden in reply to Madlegs1]

Thankyou Madlegs for your reply. I know she has been having a magnesium substitute & I bought magnesium butter which didn't help . Paracetamol do not help either. Her iron levels are normal. I understand peripheral neuropathy was ruled out but I like your suggestion of pramipexol & it may be beneficial if she did see a competent neurologist if only to confirm it is or is not neuropathy. She has always had a very healthy diet & is vegetarian. She does not seem to show the general signs of neuropathy & her doctor said she is a very healthy lady. She has done yoga for 50yrs & before lockdown was enjoying table tennis & has continued with Zumba weekly. She walks her little dog every day around her local park .

incidentally I saw burning as one of the symptoms of RLS when I looked into it but I thankyou as your comments are valid.

[Hidden in reply to Hidden]

As I wrote previously, "normal" iron levels in the case of RLS is virtually meaningless.

A dopamine agonist, e.g. pramipexole can be used, as Madlegs says, to test if she really has RLS. If it works then she has.

However, pramipexole is not advisable as a regular medicine for RLS, only as a test because of complications.

Pregabalin or gabapentin are the recommended first line treatment. These however cannot be used as a test for RLS.

[Hidden]

I am sorry to hear about this, If your sister in law has RLS it can be quite a distressing condition and as she is experiencing can cause severe insomnia.

Firstly, it might help to know that generally speaking RLS can be either "primary" or "secondary".

Primary RLS is an inherited pre-disposition to the syndrome and hence most often occurs in earlier life, for some it can start in childhood. Other family members may also have it.

Secondary RLS is where the symptoms occur becasue of some other underlying health condition. In this case, the RLS will only occur when the underlying condition occurs. It usually occurs then later in life.

It's good to make this distinction because in some cases of secondary RLS, treatment of any underlying condition may relieve the symptoms.

That blood results are all normal is not necessafrily meaningful in the case of RLS.

It depends what blood tests have been carried out. Underlying conditions that can cause the symptoms are diabetes, thyroid dysfunction, kidney failure and peripheral neuropathy. In turn, there are various causes of peripheral neuropathy such as circulatory problems.

Furthermore, if your sister in law has had blood tests for iron deficiency then there are two significant points to this. The first is not only should she have had a test of "full blood count" i.e. including haemoglobin. she should have also have been tested for serum iron, transferrin and ferritin.,

A low haemoglobin would indicate iron deficiency anaemia which can cause RLS symptoms, however RLS c an occur due to low iron in the brain and in the absence of anaemia.

The second point is that if she has had her ferritin tested and the result is "normal" this doesn't exclude brain iron deficiency., "Normal" is anything above 15ug/L. However, it is recommended that if anybody has a ferritin level of less than 75ug/L then they should start iron replacement therapy.

In addition, there are many exacerbatying factors that can make RLS worse. Mainly these may be any other medication she is taking. There is a quite a lot of medications that can make RLS worse. if your sister in law is on any other medication then. it's worth saying what.

One final thought is that although her symptoms occur at night, which is typical of RLS, otherwise her symptom does not sound like RLS. This is not to say the diagnosis she's been given is wrong but it's worth checking.

The principal defining characteristic of RLS is the urge to move and if this absent, then it's not RLS.

Sometimes the urge to move is accompanied by an unpleasant sensation. However, an unpleasant sensation on its own is not RLS.

Usually this sensation is described as creeping, crawling, ants, electric currents etc and only sometimes as burning. Some people also have pain due to RLS usually described as a deep ache.

Your sisterin law's burning then, may not be RLS and could be neuropathy.

It's worth then comparing her symptoms to the RLS diagnostic criteria which you can find by following this link.

irlssg.org/diagnostic-criteria

I don't kniw what remedies she has tried but a couple of things she may find helpful are magnesium gel rubbed into the legs or compression stockings.

As a a very last resort really there are medications that can be used to treat the symptoms. These are quite potent and have side effects and have to be used with caution when you're a bit older. but they can be effective.

As she is otherwise in good health it may be that her docotr would consider prescribing pregabalin or gabapentin. An advantage of these is that they are used for neuropathic pain as well as RLS and can help sleep

[Hidden in reply to Hidden]

Manerva this is to let you know & others who replied about my sister in law's burning outer legs that she has seen a very competent neurologist at 6pm this evening. He says it is definitely not RLS . You & Madlegs were right about this! His clinical tests show that she doesn't quite fit peripheral neuropathy either but he is arranging a nerve conductive test to be sure . He said she is an extremely fit lady for her age . I will let you know the outcome of this test.

Incidentally she has just had 3 good nights without any burning sensations in her legs.

I thank everyone who has offered so much help & given such useful information. Bless you all.

[Whymelord]

Hi, I too have been suffering from the burning in my legs, its only recently that I've felt it. As if the RLS is unbearable enough now I have this to deal with. As usual I have mentioned it to my gp who just felt around my legs and made no further comment about it. Please tell your sister in law that I know exactly what she is going through, if she finds the cause can she please please let me know.

[Hidden in reply to Whymelord]

Thankyou Whymelord. At last someone else who has burning sensations in both legs. I will certainly let you know if we find a cure for my sister in law.

[Whymelord in reply to Hidden]

Hi TPSqrt09, I'm 75,I've been on meds for rls for about 20 years, I'm only experiencing the burning sensation in my legs and feet about 4 months. I've tried cooling creams, cold cloths on my feet and legs but it's no use. As if the bloody rls isn't bad enough to deal with, now this. Being on this forum has been a great help, there's always someone to offer advice and just let you know that your not going through this on your own 😘

[HilsK in reply to Whymelord]

Hi Whymelord .. yes exactly that has happened to me .. after 22 years on PMP. My specialist who has also been through the torment of RLS when we were trying to find words for how it felt as it can in some cases feel as if someone if pouring hot oil through your muscles .. and that immediately relieved my mind because that is the scenario I have found myself in severe augmentation over the last 6 months or so. I have literally just begun to come off Pramipexole 0.0044mg at a time .. and it is absolute hell. Have you changed your durgs?

[Whymelord in reply to HilsK]

Hi, thank you for your reply. No I haven't changed my medication so I can't put the burning down to different meds. I'm on 0.18 mgs of Pramipexole, I've been on this so long and do believe I'm augmenting. Who on earth will listen to me, my gp, again brushed past it when I told her about it. I do find it helpful knowing that other rls sufferers are experiencing this so I'm really hoping that we might get some help on this forum. Please share if you find a cure. Good luck 🍀

[Marlayna]

I am sorry to read this as I see how my 89 year old mother suffers terribly from both RLS and neuropathy in her legs.

Interestingly enough, although all of my iron levels were considered normal, on the advice of one of the members I started taking iron with a probiotic before bed in the evening. After 20 years of suffering, my RLS completely disappeared. However the bouts of neuropathy remain. I know my mother takes some drug for the neuropathy and that helps her with that symptom.

[Hidden in reply to Marlayna]

Thankyou Marlayna for the information re iron & probiotic. Can you please say what your mother experiences with the bouts of neuropathy.

[Merster]

At night I experience extreme pain from my bum to my ankles after I have been lying down for 10 minutes. During the day it would be the heebies. I use requip during the afternoon and bedtime switch to gabapentin. The requip controls the daytime rls and the gabapentin the nighttime nerve pain.

[Hidden in reply to Merster]

Thankyou Merster for your comments. An appointment to see a competent neurologist is in the process of being arranged to see if it is peripheral neuropathy as the earlier treatment is commenced, if it is confirmed, the better the outlook.