Hi I am new to this forum. It’s nearly 4.00 am and I am yet again still awake . I have other health problems but the ‘thing ‘ that is keeping me awake is my RLS. I have had this since childhood. Sometimes it is worse than others. I have over the years mentioned this to my gp and oncologist but they have never offered any medication . Just the usual sleep hygiene which I am fully aware of . My dr prescribed co codomol at a high dose for pain due to a fistula that I have . I found that these made me sleep and I must admit started taking the 60 mg dose even when I wasn’t in pain - just to get some sleep and stop the horrible RLS starting . I then in the morning couldn’t wake up and felt dizzy all day . So I stopped this as I felt I was becoming addicted.
My restlessness starts in my calves and then makes its way through the whole of my legs . I even feel it in my arms and abdomen . I get to the stage where I would rather hurt myself ( I never have ) than experience these feelings . I honestly feel like punching the wall or something - ( I’m not an aggressive person) anything other than feeling this way. Although I don’t want anyone else feeling this way it has helped to read some of your experiences. I feel so alone and sometimes feel I am going mad . Any advice would be much appreciated.
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Esme2007
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Hello Esme, although it's sad that you have to join a forum like this, you are very welcome. I hope you have read some of the posts and realise that you are not alone in having RLS.
I'm sorry to read of your situation and hope you wll get some responses which will help you.
It's awful to be awake on your own at 4 am, but wonder if you live on your own or if you do have someone supportive with you.
It sounds as if you have some major health problems and having RLS on top must be awful. I don't think anyone who doesn't experience the symptoms can appreciate how distressing they can be.
I am guessing that you're quite right that you have RLS, but seem to have a problem either getting your doctors to recognise this orgetting them to give appropriate medication..
I'm not in any position to say why this is and wonder of it's something to do with your other health problems. It seems you have or have had bowel problems?
The cocodamol may have helped your RLS a little and this is because of the codeine in it which is, as you probably know is an opiate. Unfortunately, codeine is not the most appropriate opiate for RLS and additionally, I should warn you never to exceed the recommended dose, the paracetamol in cocodamol is dangerous if too much is taken.
You will be highly unlikely to be able to get your doctors to prescribe a more appropriate opiate however.
The other thing to be aware of is that if you've been taking codeine over a period of time, then stop, you will have some withdrawal effects and this could include a worsening of your RLS and insomnia.
There are quite .specific (non opiate) medicines for treating RLS, which, if your GP acknowledges that you do have RLS, I don't see why he/she can't prescribe one.
It may be that your GP doesn't know much about RLS which is quite common. In which case, like many RLS sufferers, you will have to learn about it yourself, then educate your GP.
I'm afraid, as regards your RLS, you can't expect anything from an oncologist, RLS is a neurological disorder.
There is a lot of information about RLS treatment which may be difficult to absorb all at once,
I appreciate you may feel desperate and want immediate relief from your RLS, but I think it important to consider non pharmacological treatment first.
The first thing that occurs to me is that because of your general health you may have one or more deficiencies which will be making your RLS worse.
The first of these is iron. I suspect you may be at risk of lacking sufficient iron. I imagine that your doctors have been monitoring if you have any signs of iron deficiency anaemia. If you have, then that will be making your RLS worse.
More significantly, even if you don't have the anaemia RLS is associated with brain iron deficiency (BID) and this cannot be detected by the usual blood tests for anaemia.
A blood test for "ferritin" is more relevant for RLS and simply put, if your ferritin is below 100ug/L then there is a 50% chance that your RLS can be improved by raising it to 100ug/L. Ideally it should be nearer 300ug/L. Your GP may not know this, a ferritin level of anything above 15ug/L is considered "normal".
There are other deficiencies which you may be prone to which may also have an impact on your RLS. These are mainly magnesium, vitamin B12 and vitamin D. A less likely factor is potassium.
I suggest that you therefore request blood tests for ferritin, serum iron, transferrin saturation, magnesium, vitamin D and vitamin B12.
Normally to correct these deficiencies, I'd suggest taking oral supplements of these. I'm not sure however how well you could manage taking these if you have intestinal/bowel problems. Iron particularly can upset the digestive system. A prescription strength iron supplement would possibly be inadvisable.
Many RLS sufferers take a "gentle" iron supplement and take it every other day rather than daily.
With the vitamin B12 ( you'd have to buy these yourself), you may a problem absorbing it, in which case there is an oral spray.
These will not give immediate relief. It can take months for the iron to correct BID.
Another thing, slightly more immediate is that you need to be aware of the many aggravating factors or triggers that can make RLS worse and avoid them. These include alcohol, caffeine and refined sugar
There are many medicines which can cause or make RLS worse. It would be easier for you to say all the medicines you take rather than me list them all here.
There are medicines for RLS. There are two types of "first line" medicines that your GP can prescribe. I'm afraid that although both can be effective, both have associated problems.
They are potent drugs and can possibly have some nasty side effects. Both types can cause dependency. This is not quite the same as addiction, but once you start on them, then it's difficult to stop them. The other thing is, once you start on medication for RLS, you'll probably be dependent for life.
I will mention dopamine agonists. (DAs), one of the two types. Many GPs are still prescribing these, they are well known and are effective for 70% of RLS sufferers. If you ask your GP for RLS medication, one of these will probably be the first thing they think of.
Many RLS sufferers have taken a DA, like myself and find immediate relief from RLS at the very first dose. They seem miraculous and for some people they can provide relief for years.
However, something many doctors aren't aware of is that have a high risk of serious complications. DAs commonly cause a condition known as "augmentation". For this reason RLS experts now suggest that the other first line type of medication be tried first.
The DAs are called either pramipexole, ropinirole or rotigotine.
The other type are called alpha 2 delta ligands. Unfortunately these aren't quite as effective as the DAs and additionally, they don't work immediately, it takes a few weeks. They can also be a problem for somebody with respiratory problems. Furthermore, they aren't licensed for RLS, they're licensed for epilepsy, nerve pain and MS. This means that doctors a) don't realise they can be used for RLS and b) they don't know the correct dose.
They are called gabapentin or pregabalin.
They have a distinct advantage over DAs in that they don't cause augmentation. They can also help sleep and relieve anxiety.
I'm going to submit this reply then later add another one with a couple of links
Now I'll try and give you a couple of links.
I'm presuming you live in the UK. This first link is not accessible if you don't live in the UK. It's a link to the official national guidelines for NHS doctors on the management of RLS.. The guidelines mention non pharmacological remedies. They mention the twp ypes of medicine I identified. They mention the risk of augmentation. They also give doctors criteria for when to teger you to a neurologist.
The guidelines are published by the UK National Institute for Health and Care Excellence (NICE). They are intended to specifically tell doctors how to deal with RLS and doctors cannot dispute or ignore them. You can refer your GP to them
Firstly I would like to thank you for taking the time to reply to myself with a lengthy but extremely informative bundle of information. It must have taken you ages so thank you so very much .
I have read it through and will refer to it when I visit my gp . I am a complicated case I’m afraid ! Bowel cancer at 32 and breast cancer at 50 - luckily a survivor of both ( I am 53 now).
I take letrozole - a cancer preventative drug and an anxiety drug . The former causes constant hot flashes which worsen at night . Last night symptoms were horrendous which is why I searched for the forum . I have had iron I fusions in the past ( 3 last year ) and regular blood tests to monitor my ferritin. I take a low dose of iron supplement at present . I have a damaged bowel ( it leaks through a hole in my tummy .) My bowel was damaged 3 years ago in surgery. I’ve had lots of problems since - too many to mention! I’m currently waiting to have a huge operation in Manchester but due to Covid has been delayed . So yes I have a lot of deficiencies as I cannot eat fruit or vegetables ( I get very sick) and end up in hospital . My bowel obviously doesn’t absorb as it should too .
I live with my husband who is very supportive bless him . I kick him constantly! But at 4am you feel very alone when your husband falls asleep as soon as his head hits the pillow and sleeps 8 hours and wakes refreshed ! So jealous!!!!!! I live in Solihull near Birmingham so yes in the uk - I will now have a look at the links you provided.
Having just re-read one of your replies, I see you said you take letrozole - a cancer preventative drug and an anxiety drug
I am stupid! I wondered why a cancer drug can also be used for anxiety. I now think that you take letrazole AND an anxiety drug. i.e. two separate drugs.
The drugs commonly given for anxiety these days are a Selective Serotonin Reuptake Inhibitor (SSRI) e.g. prozac or citalopram.
If this is the case then you need to know that these drugs can make RLS significantly worse!
If you can explore non-pharmacological ways of dealing with your anxiety and withdraw from the SSRI, if that's what you're taking, your RLS may significantly improve.
If so, do not suddenly stop it. it has to be gradually reduced.
Yes I am in the process of reducing my anxiety meds . My RLS got significantly worse when letrozole was introduced 2.5 years ago . I have taken anxiety meds for over 20 years now and do require them . I have tried without but my quality of life is poor . Thank you manerva.
A nicotine replacement tablet stops my RLS immediately. Check with doctor if you are thinking of trying this, although it is available in any chemist.
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