Mum in pain with restless legs. - Restless Legs Syn...

Restless Legs Syndrome

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Mum in pain with restless legs.

Missysmamma1811
Missysmamma1811

My mum has suffered with restless legs for years but she is now struggling with pain rather than restless legs.

She has been back to GP today and was told she needs to wait for appointment from clinic which should come next week. She is in a terrible way, no sleep and pain now. Any suggestions what we can do. 🙏

37 Replies

I'm really sorry to hear about your mum's pain.

Did the GP not offer or suggest any painkillers?

Unless the GP actually instructed your mum not to take any painkillers, then unless she's already taking some, she might try some over the counter product.

There's nothing in what you write to say that the pain is in any way connected with RLS.

It's possibly due to an unrelated coincidental issue.

I hope she finds out what it is quickly.

Thank you for your helpful reply.

Yes it’s related to RLS but only recently she has started to have the pain rather than the restless.

I only spoke with my dad this evening as mum was our walking ☹️ So I will get more information about pain relief when I speak to them tomorrow.

Thank you once again. 🙏

How strange because this is exactly what has happened to me. Severe pain in my knees started just before Christmas and I had never had it before. There is only pain when the RLS kicks in. I’m ahead of you, as my GP agreed to have both knees X-rayed to eliminate arthritis. The x-ray showed slight to moderate arthritis ( not sufficient to cause this type of pain). I was, at the time three months down the line of coming off the Neupro patch. I have now been off all meds for a month but whilst the usual RLS symptoms have subsided a little, the pain remains. On Tuesday my Dr prescribed Capsaicin Cream. Last night the pain was lessened. I say it’s definitely linked & wonder whether the Neupro patch was masking the pain.

This is very interesting. I too get pain in my knees during the night when my legs start up. They feel sort of hot and sore. I have assumed it was coincidental. You have given me some insight.

Thank you for your message, my Mum is on Pramipexole 0.088mg, doctor did not give pain relief.

My apologies I feel compelled to point out the unfortunately very common practice of many health professionals making judgements about what is a subjective experience - i.e. pain. as if somehow it can be objectively judged.

Your doctor may be correct in saying you have mild to moderate arthritis., but to say "not enough to cause this type of pain" isn't either helpful nor accurate.

A very famous nurse once said pain is -

"whatever the experiencing person says it is, existing whenever he/she says it does".

In other words a doctor should ask you what your pain is like, not tell you.

There is nothing in a neupro patch that can mask pain.

A further reason for writing is that I've noticed over time an apparent tendency of people with RLS. That is, when they get new symptoms they blame their RLS for it. Sometimes these new symptoms are clearly unrelated to RLS, but "pain" is a difficult one.

Also this tendency may be partly influenced by the phenomenon of "transductional reasoning", i.e. if two things occur together then one must cause the other.

I would never say that RLS doesn't cause pain, but what I would say is, if you've had RLS for some time then "it" starts to get painful then the pain could equally be due to something else. It should be investigated.

Luckily, you've done this and now know you have arthritis.

Thank you Minerva for your reply. My husband has had a knee replacement and the pain he was in , before the procedure, was constant. It affected him night & day and changed his daytime activities. ( golf, gardening & walking). My pain only comes at night and it’s difficult to judge with any certainty whether the knee pain comes before the RLS symptoms or the other way round. My doctor has prescribed Capsaicin cream which it have been trying since Feb 18th. It does ease the knee pain but in doing so prevents me from seeking relief from the RLS urges as the hot water seriously reacts with the cream and you feel as if scalding water has been poured onto your legs. This is a noted side effect. I have now been off the Neupro patch for nearly five weeks and am using nothing except the cream. I dread the night as I’m lucky if I get two hours sleep. Having said that, I am glad to be free of all drugs as my symptoms are much less than whilst I was on the patch. The situation is extremely complex and I really value your support and expertise. My GP is very supportive and is interested enough to ask me to report my findings back to him & readily admits that he doesn’t know much about RLS. Again many thanks for your reply

If you've not tried pregabalin or gabapentin before, these can help with BOTH pain and relieve RLS symptoms.

If your pain is at least partially due to RLS then relieving the RLS, I would have thought would also relieve the pain.

Pregabalin/gabapentin can do that.

If your pain is at least partially due to arthritis they may help with that too.

Here's the UK prescribing guidelines for pregabalin for RLS

cks.nice.org.uk/topics/rest...

UK prescribing guidelines for gabapentin for RLS

cks.nice.org.uk/topics/rest...

UK prescribing guidelines for gabapentin for pain.

bnf.nice.org.uk/drug/gabape...

Once again, thank you Manerva for taking time to reply to me. I have tried both and reacted to them very badly. For a year I had a severe facial rash. My skin looked raw, sore and very red. My eyes were swollen and I was sent to a dermatologist who prescribed antihistamine. This lasted for over a year - I looked a sight & felt as I looked. I’m no oil-painting but I was loosing my confidence and not wanting to go out. By chance I saw a locum on one of my many visits to my GP and this young woman took one look at me and asked what drugs I was using. She stopped them immediately. This was whilst I was coming off pramipexol and before the Neupro patch. I do have to be very careful with drugs as I react very badly to many including penicillin & aspirin. This is now my problem because and don’t know what to do next. I was seeing a sleep consultant before Covid.

If first line teratments for RLS fail, the next option is an opioid.

Unfortunately it's not so easy to get a doctor to prescribe one.

A low dose of a potent opiod is better apparently than a higher dose of a less potent one.

Methadone, oxycodone and buprenorphine have a good reputation for RLS.

Antihistamines are not advisable if you have RLS, particularly if they are sedating.

About two years ago I was prescribed a short course of Tramadol. I had 14 left so over the last few weeks, when things get really bad, I take one and this does ease all the RLS symptoms including the knee pain. I hope that maybe my doctor will prescribe these for me. The worry I suppose, is addiction.

Of course tramadol should help, but I believe its not necessarily the best opioid for RLS long term.

It is potentially addictive but with care that shouldn't be an issue. It is however dependency producing and can have with drawal effects.

Some claim that it can cause augmentation. I doubt this, it is more likely to be "rebound" and this may be prevented by using an extended release trmadol, rtaher than immediate release.

If you can get tramadol that's great,but it might be worth tying to see if you can a low dose of a more potent opioid e.g. oxycodone or buprenorphine.

Thank you Manerva. I value your advice and obvious expertise and am grateful for it. Following your suggestion that my knee pain may not be related to my RLS , last night I decided to pay more attention to which started first or whether it was simultaneous. I did take one of the precious Tramadol and got one & half hours sleep. What woke me was the pain in my knees & the RLS symptoms followed on as I started rubbing my knees. So it looks as though you are correct & they could be separate issues. However, the pain does change legs exactly the same way as the RLS. I have suffered with RLS since I was 13 but the pain only since 2nd lockdown during which I was reducing the Neupro patch. What to do next I have no idea. If this site wasn’t so public I would show you a picture of myself whilst taking pregabalin & Gabapentin so that’s a no-no. If you don’t mind me asking, what are your views on Cocodamol? Thank you for your time. X

I wouldn't like to say that the pain and the RLS are entirely seperate it could be that the pain is partly due to arthritis and partly due to RLS.

Whatever is right, the main thing is that you get relief from both.

The answer would seem to be an opioid. Opiods are known as painkillers.

Codeine is recommended for RLS where there is pain, but is a weak opioid

It can be prescribed up to 60mg 3 - 4 times a day. You don't have to take it that many times a day and if you do would imagine awful side effects.

Tramadol is not recommended but can be prescribed for RLS with pain off label.

It is also classed as a weak opioid.

Cocodamol is a combination of paracetamol 500mg and various doses of codeine.

That is 8mg codeine, 15mg, 30mg or 60mg.

The 30 and 60mg doses need a prescription. I think perhaps the 15mg too.

The paracetamol has advantages for pain relief but none for RLS.

It seems that many RLS sufferers find relief from a low dose of a more potent opioid. Popular opioids for this seem to be oxycodone, methadone or buprenorphine.

Oxycodone is licensed for RLS in the UK, but I imagine you'd have to consult a specialist. Some people have had success getting a prescription from their GPs for temgesic (low dose buprenorphine).

NSAIDS can be used for arthritis but it is not ideal to take one long term because of their potential complications. Little or no effect on RLS.

Some doctors prescribe antidepressants for chronic arthritic pain, usually amitriptyline. NOT ADVISABLE it makes RLS worse.

A further option for arthritis in the knee if a doctor is willing is steroid injections into the knee.

Thank you so much - you are an angel 😇 xx

My RLS has also become more painful in its presentation. I feel for your mom. I have weaned off of my previous medication (ropinerole) because with was no longer effective and an in call doctor started me on gabapentin yesterday but with a follow up appointment to see the doctor - due to a winter storm all offices were closed last week. I am very sorry to hear they did not offer any temporary relief - I can relate I have been sleeping less than 3 hours per night due to the pain. But, bottom line - I am further proof that RLS can present itself as pain. Hopefully the right meds will address her (and my) RLS - I would not feel bad about asking for some immediate medication for temporary relief - my doctor said I can take sleep aid or Xanax both old prescriptions I have with the gabapentin until it builds up effectiveness (but not both) this does not help the pain but does help me get a little more sleep. Good luck to your mom 🤞🏻❤️

Thank you for your reply, my mum takes Pramipexole 0.088mg, doctor did not give pain relief either.

Thank you for your reply, my Mum is going is on Pramipexole 0.088mg, doctor did not give pain relief.

If the pain is due to RLS then the pramipexole might help. Which would be great.

Unfortunately, I feel I ought to give you some information that your doctor has apparently failed to give your mum. This is possibly because the doctor doesn't know.

I write this because it sounds as if your mum hasn't been given any medication for RLS before. My apologies if she has.

Firstly, pramipexole, which is one of three drugs called Dopamine Agonists (DAs), isn't the only medication that can be prescribed for RLS. There is another type of drug known as the alpha 2 delta ligands, (A2Ds).

Secondly, although both DAs and A2Ds have side effects some of which can be unpleasant, the DAs carry a risk of two major complications.

These are Impulse Control Disorder (ICD) and Dopaminergic Augmentation.

The first of these, ICD, is much less common and tends to occur fairly soon after starting a DA. It can take the form of gambling, shopping, hypersexuality or compulsive overeating. All of which can be life changing.

The second, augmentation, is very common. For some it may take years to develop, for some only months, but when it happens it can make RLS worse, significantly so. In addition the best treatment for it is to stop taking the DA. This can cause severe withdrawal effects.

Of the three DAs prescribed for RLS, pramipexole is the worst possible.

The A2Ds on the other hand, despite their possible side effects do not have the major complications that the DAs have.

Because of this, internationally the DAs are no longer recommended as a first treatment for RLS, but the A2Ds are.

Here's some info about this.

pubmed.ncbi.nlm.nih.gov/274...

Furthermore, the A2Ds, that is either pregabalin or gabapentin are also prescribed for pain, particularly nerve pain and are also known to help sleep and relieve anxiety.

It's up to your mum really. She may have some success and be able to continue taking the DA for some years. I managed six years before things got really bad.

In which case your mum find that after a while 0.088mg stops working. If that happens increasing the dose may help at first. However RLS experts suggest it's never increased to more than 0.18mg (or 2 X 0.088mg tabs).

Alternatively, your mum could ask to switch to pregabalin or gabapentin before dependency on the pramipexole develops. That doesn't take long.

I feel I have to warn you of this because doctors fail to do what they are supposed to. I suspect it's because when it comes to RLS they are usually ignorant, probably through no fault of their own.

The TWO other things a doctor should do before prescribing drugs for RLS is to investigate if there is iron deficiency and to consider any aggravating favtor making the RLS worse.

Iron deficiency does not necessarily mean anaemia, although anaemia can lead to RLS.

Brain iron deficiency is a major causative factor in RLS and a simple test for this is blood tests for serum iron, ferritin and transferrin.

The most significant of these is ferritin. Unfortunately many Drs do not understand the significance. People with RLS need higher levels of ferritin i.e. at least 200ug/L, than people with no RLS.

In practice if your mum's ferritin is less than 75, then starting on an oral iron supplement may help.

Heres some more information about this

sciencedirect.com

Deficiencies in vitamin B12 and D, if corrected can also help with RLS. This is not as significant as Iron.

Aggravating factors or 'triggers" also need to be considered. Many medications, if your mum is taking any, can make RLS worse.

The main ones are antidepressants and sedating antihistamines, but there are many others.

What your mum eats or drinks can make RLS worse.

Some can have an effect the same day, so can be remedied easily. Some.are cumulative over time and identifying what they are and reversing their effects can be difficult.

Alcohol, caffeine and sugar are all triggers. Sugar added to hot drinks, sugary drinks, sugar put in desserts and anything with sugar in them should be avoided e.g. cakes, biscuits chocolate etc.

There is quite a bit information about specific diets that help eliminate things which aggravate RLS. But not everbody reacts to the same things.

As an overview on the management of RLS according to the UK National Institute for Health and Care Excellence the link below is to their CKS specifically published to guide GPs in managing RLS. Your mum might do well to read this and refer her doctor to it.

The page which this link.will take you too is about initial management of RLS but there.is information on ALL drugs used for RLS and a section on augmentation.

cks.nice.org.uk/topics/rest...

I hope you find this helpful and not too much to digest.

This is incredible thank you so much, I have forwarded this to my Mum and Dad and brother to look at. My mum has been on pramipexole for 4 years now and she is now on anti depressants too which I will find out what ones these are. She was sent a leg massager by a relative yesterday and managed to sleep last night we are unsure if this had anything to do with the massager or she was just exhausted.

She is waiting to be referred back to the leg clinic and should be hearing on Tuesday so I will make sure she is equipped with all the information you have sent me.

I cannot thank you enough, you certainly know your stuff on RLS.

God bless you.

I will let you know the anti depressants drugs too to have your take on this if you don’t mind.

I don't mind at all.

Hello,

My Mum is still waiting for her appointment from the clinic.

I am getting really wound up and I want to call the clinic myself but my Dad has said let’s leave it until tomorrow.

Mum's morning anti depressant tablet is Venlalic XL 150 mg prolonged-release tablets,her night tablet is Mirtazapine 30 mg film- coated tablets.

A family friend sent her a leg massager on Saturday which gave her relief for one night but is now hit and miss, it was not cheap either.

We have literally tried everything.

I have just parcelled up a tens machine and will post it tomorrow to her.

Is there anything you can recommend?

I am going to be going to this clinic appointment with my mum and I will be using all the information you have gave me.

Did you suffer yourself for a long time.

Maria

Most antidepressants can make RLS worse. There are very few that don't. Venlalic, I'd say is likely to make RLS worse.

Mirtazepine, I know for certain from personal experience and from what others say does make RLS worse.

The only two antidepressants I know that aren't supposed to make RLS worse are Trazodone and Bupropion.

I'm afraid that TENS machines have a poor reputation for relieving RLS.

I believe leg massagers can help as long as they are applied. I'm.not sure if they're any different but there are vibrating pads that can be left on that seem to have a better reputation.

I'm afraid that most things that relieve RLS rather than prevent it tend to act only temporarily.

This includes things like hot showers, leg stretching, magnesium ointment.

Some claim that some brands of CBD oil are effective, but they're not legally available in the UK. The ones that are don't seem to be effective.

I have RLS for over 40 years, luckily most of that time it was mild and didn't seem to be a problem. In 2009 following a course of antidepressants and it became severe. I saw an ignorant GP who referred me to an ignorant neurologist who started me on pramipexole without any warning.

After about 6 years I started suffering augmentation, but at that time had never heard of it. I saw two neurologists and several GPs who never mentioned it. After having found out about augmentation from this site in 2018 and after starting on gabapentin for nerve pain I started reducing the pramipexole and eventually stopped in about June 2019. The augmentation disappeared and since then I have been taking only gabapentin and hardly ever have symptoms.

I have been very lucky since gabapentin doesn't always work for somebody who has had augmentation.

Since then I have been on a mission to warn people about dopamine agonists, it is better never to get augmentation in the first place.

Jules1953
Jules1953 in reply to Manerva

What dosage of Gabapentin do you take Manerva, kind regards Julie

Manerva
Manerva in reply to Jules1953

600mg once a day.

This is quite a low dose, but works for me.

Jules1953
Jules1953 in reply to Manerva

Thanks Manerva, kind regards Julie

This information is incredible you are really a kind soul for doing this for all the RLS sufferers.

I am so pleased you are not suffering any more.

We are still waiting for the consultant to call my mum, I have taken notes from all your threads you have sent to me and once I am allowed to speak to the consultant I will be using these notes.

I have told my mum to call her GP as she was the one who has prescribed the anti depressants.

My Mum and Dad were looking for hot and cold packs today in boots to try that.

I love 250 miles away from them and it’s breaking my heart.

I have ordered her them on Amazon so hoping they give her some relief.

How can they leave her like this.....

Thank you once again 🙏 god bless you 🙏

I'd suggest you don't quote what members on this site, including myself have written.

It is too easy for doctors to dismiss what members write as uninformed opinion. Doctors aften do this and some of it is.

It would be better to quote from the articles and infromation to which links are given. These can be authoritative sources of information a doctor will find hard to so easily dismiss.

This link in particular is to the NICE guidance for GPs on managing RLS. A GP would be very unwise to dismiss it at all.

cks.nice.org.uk/topics/rest...

THere is information on this site about iron and RLS and about antidepressants and RLS, see the page "Scenario management".

This is a link to information on iron therapy

sciencedirect.com/science/a...

This is a link to information about first line treatments

pubmed.ncbi.nlm.nih.gov/274...

Hope all goes well at the clinic.

I certainly will thanks once again for all your help.

Well it’s been a few weeks since I was on here, Mum has her appointment over the phone with the clinic on Tuesday. She had not been getting the best of sleep and as you stated the tens and the massager only caused temporary relief.

I could not push the clinic appointment as Mum was using the tens and it was giving some temporary relief she did not like to push for a nearer appointment to my disgruntle.

Mum has had a awful cough and is in her 3rd lot of antibiotics, I feel this is lingering through her lack of sleep.

My sister chose to travel from London today to Liverpool to see Mum and Dad at the local beach just to check how they are. In preparation for this mum saw her GP who she says she gets on well with and asked for a sleeping pill just so she could get a nights sleep so she could see my sister and my niece without feeling tired as the tens and massager is only working on fewer days than it was when started.

Anyhow the GP gave her

Clonazepam and Zopiclone and today after all that Mum was vomiting this morning and did not get to see my sister or niece, I have a feeling maybe the sedative.

I am really feeling for her and I have wrote detailed notes for the clinic phone call on Tuesday and just hoping this gets sorted.

Also speaking to mum yesterday she suddenly said she had stopped the pramipexole!!!!!

The GP is calling Mum again on Monday to check how the weekend went, my brother is now going down tomorrow to go through the notes with them that I have prepared.

OMG, sorry to hear some of this.

Yes, poor sleep can lead to reduced immunity which won't help with an infection.

I can accept that either Clonazepam or Zopiclone might help, but not both together!

Zopiclone may be the better of the two if it doesn't make her sick. It's short acting, Clonazepam is not.

It's really dangerous to suddenly stop taking pramipexole, I'd suggest you persuade her to start again. It has to be reduced slowly to reduce withdrawal effects which she may already be experiencing.

Hello Manerva,

Mum had her appointment with the Movement Disorder Clinic today. However prior to the appointment I emailed the consultant my finding from the NICE website 😉

Her medication was changed to Gabapentin and she is to have blood tests.

I have e mailed the consultant again today for some more information with the appointment.

What are your thoughts Manerva?

Hi, the change to gabapentin sounds positive. It may take a while to work and the dose has to be inreased gradually until an effective dose is found.

It's usually taken at night only for RLS, This is also better to start with as it, at first, can cause drowsiness, dizziness and difficulty walking. If taken during the day this can cause a fall. These side effects usually fade in a few weeks.

Blood tests too, sound good.

Let us know how things go.

i also have now developed leg pain with rls.it gets worse later in the night i.e after 1 a.m and useally wakes me every 1 to 2 hours when i have to stand up for 5 to 10 minutes without moving my legs. this allows me to sleep for 1 hour on a bad night to 2 hours on a good night.

Thank you for your message, my Mum is on Pramipexole 0.088mg, doctor did not give pain relief.

Manerva
Manerva in reply to otter5

As I've written to others. This "new" pain may be due to RLS, I wouldn't automatically assume it is however. There are many causes of leg pain. Just to make sure, get it checked out.

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