I’ve just joined this forum as I’m coming to terms with the belief that I have RLS. I’m a 54 year old male living in the South East of the UK and over the last couple of months have had the sensation to sit down with my legs on the ball of my feet, and bounce them up and down rapidly. It’s worst at night, and I’ve gone from being a good sleeper, to being restless and up most of the night with this sensation in my legs. In the evening I feel agitated, and having my wife or either of my daughters sat next to me on our settee, I feel uncomfortable as I have the sensation of being restricted.
I fear that the condition will have a big impact on life with insomnia, and getting through long journeys or sitting still during meetings or films and theatre. Plus, not that I was a big drinker, but I’ve given up as the medication I’m in suggests no to drink.
I’m taking three 10mg Amitriptyline which my doctor has increased to this level over the last few weeks, but I haven’t felt an improvement in my situation, but I’ve now read that this medication could make the situation worse!
I feel comforted in reading these posts that there is a group who shares their experiences, but have come to realise that there is no magic pill that fits everyone’s condition.
I have a lot to learn from all your experiences, and this forum is a great place for me to do so.
Written by
Walrob66
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Hi, welcome to this forum and I hope you find it helpful.
Firtsly, just to confirm that you really do have RLS. There are other conditions that mimic RLS and unfortunately many doctors are ignorant about the condition, misdiagnose it and mistreat it.
The principal and defining feature of RLS is the "urge to move", notwithstanding any sensation you may be experiencing, if you don't have this then you don't have RLS.
From what you write it does seem as if you do have this, e.g. you say you feel restricted if someone sits next to you.
In addition, your symtpoms must have the following features.
They only occur or are worse when you stay still, sit or lie down.
They are relieved by moving.
They only occur or are worse at night.
Here's a link to the official RLS diagnostic criteria.
Your doctor is ignorant. Amitriptyline is not one of the recommended treatments for RLS. As you surmise, antidpressants, like amitriptyline can make RLS worse. Your doctor then is doing you more harm than good.
There are two things your doctor should have done before prescribing any medication for RLS.
The first is to carry out checks to see if you have any underlying condition which may be causing it. This includes -
A family history of the condition. Have any of your close relativs also had RLS. This is significant because if there isn't and you haven't experienced it earlier in your life then it's likely that it is being caused by some other health condition . Typical conditions are thyroid dysfunction, kidney dysfunction, anaemia, diabetes, bowel inflammation and neuropathy
Blood tests for iron deficiency. This includes serium iron, transferrin, ferritin and haemoglobin. Also vitamin B12 and vitamin D. Even if your haemoglobin is OK, if your ferritin is below 75ug/L then you could benefit from taking an oral iron supplement. This is the very first treatment that should be considered for RLS.
Looking at all the medications you're taking to see if any of these may be exacerbating your RLS. The main group of medications to do this are antidepressants, but also antihistamines, some antacids, some heart and blood pressure tablets and others.
As far as treatment is concerned, it's worth repeating , amitriptyline is NOT a treatment for RLS. It can be used as a treatment for insomnia, but since your insomnia is caused by RLS it won't work AND it will make the RLS worse.
Iron therapy is the first treatment to be considered.
If you decide to take an oral iron supplement then the one most accepted by RLS sufferers is "gentle iron", ferrous bisglycinate. This is an over the counter supplement (Holland and Barrett). It is kinder to the gut. Prescription supplements can cause gastrointestinal upset and aren't necessarily any more effective. NOTE, these don't work immediately and can take up to 3 months for any effect.
The two main medications recommended for treating severe RLS in the UK are called alpha 2 delta ligands (A2Ds) and dopamine agonists (DAs).
Here's a link to the National Institute for Health and Care Excellence (NICE) CKS for RLS
Unfortunately although this page warns about the complications of taking a DA, it does not recognise the international recommendatiion that DAs are no longer prescribed for RLS because of the high risk of these severe complications. The A2Ds should be tried first, i.e. pregabalin or gabapentin.
Overall, it asppears that your doctor is mistreating your RLS. You can refer the doctor to the links I've provided. Significantly, no UK GP can dispute what the NICE CKS says. The CKS is published by a government agency and is based on recent evidence and is specifically intended for guiding GPs on how to treat RLS.
The CKS contains a lot of information about RLS including prescribing guidelines for the medications.
I suggest you stop taking the amitriptyline, but need to taper it off slowly to avoid withdrawal effects.
Thank you so much for your responses, and I really appreciate the time you have taken for such a detailed information and links.
I discuss further with my GP, and will slowly come off the amitriptyline. I’ll use your information you have provided to investigate for myself, and although I’ve had a couple of blood tests, request a further one to look specifically at ferritin.
Thankyou Manerva for all the knowledge that you pass on to those who suffer with RLS.You have helped me personally and you give so much time and energy to helping others.
I am trying to do the same here in Australia along with others like Kester Howard.
It is so upsetting to read people's stories and to know that some Doctors are doing more harm than good.
We are even further behind here in Australia. Seriously, what is the problem, I have suffered with RLS for 49years and in that time, how far has the medical profession come. I have just spent 2 years weaning off Sifrol and now I am trying to get the message out there about how detrimental this medication is. It annoys me that Doctors here in Australia are still prescribing this medication. How behind is this country.
Your doctor has done you a disservice. Amitriptyline causes/ worsens RLS in 99% of sufferers. Not surprised though as RLS is not taught at med school & in the UK they generally know nothing about the condition which is why we have to become our own experts.
Manerva has given you excellent advice. Avoid all anti depressants ( except Trazodone Wellbutrin are the only safe oned) and sedating anti histamines.
Raising serum ferritin above 100 resolves RLS in 60% so that’s why your GP should have arranged blood tests BEFORE prescribing medication.
Spend a few hours reading this website and learn all you can. Most neurologists in England also know very little about RLS.
Unfortunately there is still much ignorance in doctors about RLS in the UK too. Doctors not only still prescribing dopamine agonists, but also things like amitriptyline and levodopa.
Unfortunately if you don't know yourself then you won't appreciate that the doctor doesn';t know either.
I was a victim of this ignorance so that's why I try to inform people to prevent them becoming victims too, or at least rescuing them.
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