RLS is a Sleep Wrecking Nightmare - D... - Restless Legs Syn...
RLS is a Sleep Wrecking Nightmare - Daily Mail - 8 June 2021
I have found that soaking my feet in ice water for 45 minutes before bed stops the burning in my feet and the awful feelings in my legs. I have to get into bed as quickly as possible after the cold water treatment and I keep my feet uncovered all through the night. This treatment works wonders for me. I've been doing it ever since last autumn.
Thanks, Kaarina.Good fair article. Not trivialised and covers all the points.
How much of the medical profession reads the Daily Mail?🥴
The comments would take an army of us to correct!🤔😜
KaarinaCan you advise if RLS Society here or in the US has ever tried to organise or run a proper clinical trial on the Bangladesh study in 2016 that showed potassium citrate in doses normally used for cystitis, cured all 68 of their RLS patients within 3 months.
I am amazed there seems to have been no action to check the validity of the results and the nature of beneficiaries.
This forum has a number of people who have found benefit and others who have not. Few say what they have taken or how much.
The latter may be taking OTC potassium tablets which contain homeopathic amounts. They may be deficient in magnesium which works with potassium.
Given large numbers of people do not take adequate amounts in their diets and blood levels do not necessarily reflect the amounts inside cells, surely RLS could at least give advise on how to safely increase dietary potassium and magnesium and use supplements.
For example as Potassium citrate mixture for cystitis says it’s is
Contraindicated in hyperkalaemia, renal dysfunction, ventricular arrhythmics and Addison's Disease.
Hi Oldcolner,
I suggest you contact the chair of RLS-UK, Julian Spinks, with your query.
chairrlsuk@btinternet.com
Interesting reading the comments. It's so clear we need our campaign. There are GPs prescribing tonic water and Amitriptyline and advising exercise. One doctor has advised her patient that it's extremely rare in men! So many suffering.
As Madlegs says, "The comments would take an army of us to correct."
I have heard that one before "It's extremely rare in men."
Omg this is so true. I had RLS for ages but got dismissed by a GP as 'you need to exercise more'. Then when it came back during my pregnancy I went to a different GP (they have many locums at my practice). He laughed and knew exactly what I was talking about. Suggested tonic water, magnesium spray during my pregnancy as I wouldn't take anything. One GP suggested taking 50mg of tramadol which would 'knock it on the head' and allow me to sleep and carry on with life. Absolute life changer. Stopped taking them as it somehow went away, and recently it's back with absolute vengence. I've been pacing up and down in the early hours - you all understand what it's like. I asked a new locum for a low dose of tramadol and she may as well have called me a drug addict and said 'They don't work". She gave me a prescription Amitriptyline and told me to drink tonic water. She also said 'I was obviously depressed and anxious - and would need to take these every evening non stop. I was told I needed to exercise more - I am a teacher with a toddler. I don't stop moving or standing on my feet even a weekends. Am still trying to learn more about it. Wondering if 'Tramadol' is a bad thing to take as a dose 50mg when symptoms come on, but I just don't know any more. I do have a poor diet (Hashimoto - gluten free, hypothyroid, PCOS, Endo - all diagnosed by private blood tests etc. Just joined this site today - would welcome any suggestions thanks. Gutted I missed the documentary on Channel 5. Have looked for it on catchup. The GP said I must have watched it and 'got ideas' as she didn't believe I had it - this was a phone conversation. I didn't even know it was on TV or would have seen it. Best wishes
Amitriptyline is a no no for RLS. Any GP or neurologist with basic knowledge would know that.Have a look at all the pinned posts and go back to your GP with the NICE guidelines.
First, they should carry out full blood tests and ensure serum ferritin is above 100. Next ensure you're not taking meds that cause/trigger RLS like Amitriptyline! If raising ferritin and getting off Amitriptyline don't stop the RLS, meds will be required. Dopamine agonists like Ropinirole, Pramipexole and the Rotigitone patch are no longer First line treatment because of the serious complications of Impulse Control Disorder and Augmentation. Pregabalin or a low dose opioid are best treatments.
Please join our campaign to get RLS included in the curriculum. The reason doctors are so ignorant/negligent is because RLS is never taught during medical school or GP training. The medical profession therefore think it doesn't exist or it's a minor irritant.
Unless we all take action, nothing will change.
See the pinned post which has the template letter and email addresses.
Wow thanks for the reply and your advise/ suggestions. Yesterday I sat looking at the box of unopened Amitriptyline on the table. I discussed it with my partner and he said 'not to be hasty' and get advise online rather than from this GP who wouldn't give me 5 mins on the phone and didn't read my notes on previous medical issues.
Thank you so much for your reply. I use to use 'Health Unlocked' for answers when I was trying to get pregnant with my little boy (now 2). I didn't know there was a forum ' for RLS'. What a Godsend. I can honestly say, if I didn't take the advise from others on this site I wouldn't have stayed pregnant or have my little one now. I was dismissed so many times by my GP with 'being fobbed off, you look fine, it's nothing". When I finally paid for all these private blood tests and surgery etc I got answers. Such a shame they GP (or at least the one I spoke to yesterday) seemed to think 'RLS is no big deal, even when I explained how tough it was without sleep.
Thank you. Will def see post you recommended and join the campaign 
Exactly. I have advanced MS, can't walk far and have serious balance, bladder & bowel issues. Neurologists and GPs take it seriously. However, MS is a walk in the park compared to RLS. If GPs were taught how serious and life threatening RLS is ( highest suicide risk of all neurological diseases) they would listen to us and treat us properly. They seem to think it's like occasional cramps.It's the perfect torture. Wait unt someone is exhausted and as soon as they lie down to sleep, poke them awake, constantly.
The more of us who write in, the more chance we have of being listened to.
Hope your RLS settles by raising ferritin above 100.
Can you recommend any 'specific brands of iron or should I just ask in Holland and Barrett? Boots the Chemist wouldn't give me iron without a prescription. They said the OTC wouldn't make much difference to RLS
Most people on here take iron bisglycinate (also known as gentle iron). Usually available from Holland and Barrett and some pharmacies. Some evidence to suggest taking two tablets every second day aids optimal absorption.
If your serum ferritin is below 50 this should improve matters. If your serum ferritin is above 75 it will be more difficult to raise with a supplement and you may need an infusion. This could be what the pharmacist was referring to.
Also, RLS is linked to hypothyroidism. My daughter has hypothyroidism and it's another area where GPs know nothing. Daughter was fobbed off for months, did her research, saw a private endo and was diagnosed. T4 did nothing except cause weight gain so she did more research and found out about T3. She found Natural Dessicated Thyroid works best but not available on NHS because they will only allow synthetic T4 and some doctors still don't accept reverse T3 is real. It's time they listened to their patients. Doctors really do not know best.
That is interesting. I have been taking thyroxine for years and years, since I was 16 years old after a nodular goitre was removed. I have never heard of NDT until now.
Ooh Kaarina. Happy to chat. There's an ongoing Twitter campaign by @theThyroidTrust. They've persuaded NICE to change/update thyroid prescribing guidelines. NDT was standard combined treatment for hypothyroidism ( it's made from pig thyroid glands). Many people do so much better on it than on synthetic T4. So many produce reverse T3 when taking T4 alone and it makes them even more ill. There also the post code lottery. Some CCG allow T3, others don't. None allows NDT. Daughter has to buy meds from Germany and it costs a lot. She's fighting against the system. Women know their own bodies and GPs and endos need to listen.Mesh scandal, lack of knowledge about Thyroid disease and RLS affect women disproportionately.
Here is the link to the campaign Joolsg mentions in her reply to you. healthunlocked.com/rlsuk/po...
That’s disgraceful treatment by your GP but sadly similar to the experiences of lots of people on here. Unfortunately, it is usually necessary for the patient to do the work with this condition. As Jools says (a very knowledgeable member), read up about rls, download the studies and make decisions about how you think you need to proceed. Eliminate possible triggers/exacerbants (eg amitriptyline which should be avoided), get your serum ferritin tested - get the actual figure not just that you are ‘normal’ and if you are below 75 start a supplement. Iron treatment can result in significant improvements. Some people find symptoms completely resolve after raising serum ferritin. An iron infusion should also be considered.
Do not let them put you on a dopamine agonist unless all else fails. A very recent study found positive outcome using the drug dipyridamole which is less high octane than some other treatments (though it is a blood thinner so not suitable for everyone).
Start your own thread for more targeted responses. This is a great forum with very knowledgeable people on it.
Wonderful. Thanks. I can't believe she almost called me an addict, and said I was never put on Tramadol for RLS - even though I was. I can't believe I was prescribed 50mg Tramadol which worked, and this new locum has just pulled the plug and said "I had depression and she didn't believe me". How can you diagnose anything on a phone converstation anyhow, when she couldn't even read my notes on the system. I wonder if it's because they have had nothing but different locums over the years since the other GP I had (whom was very good retired when his partner died). You never know who you're going to see or hear from next - if you're lucky enough to get through on the phone.
Everything else I have, I've had to pay for my own tests privately. Thyroid and antibodies bloods test - to verify it Hashimoto and not in my head. Laparoscopy - to prove Endometriosis and other fertility issues. I did ask for a blood test (which they should be doing for my thyroid anyhow, but she refused). Will try to get bloods done private inc iron levels. Really appreciate your help. I can't believe there are so many things out there they know very little about - Hashimoto hypothyroidism, Endometriosis, Ovarian Cancer (which my mother passed away from... as the pain was in her head according to her locum) and now RLS. Such a shame they can't take these things seriously.
Your GP practice sounds like a law suit in waiting. Your own experiences alone ...
Wow. Your GP practice is Gaslighting you badly. They sound dreadful.
Had to google 'Gaslighting' to be honest. Such an accurate definition. I think the problem is... it's not a regular GP. Whenever you speak or see anyone it's always a different locum so they don't read your notes or even listen.
Honestly, even regular GPs know very little about RLS and most think it's psychological. That's why RLSUK are running the campaign. Until it's taught at medical school and during GP training, it will continue to be seen as psychological, all in our minds and not a serious disease. Please do help by sending the template emails and letters. The more the merrier.
Thanks Kaarina - should be mandatory reading for GPs.
No mention of alpha 2 ligands?
I didn't l know there were comments!
I just read some! I only managed page 1.
eek!!!!
It soundas if somebody already tried to correct the errors.
I don't think theyll get a penny for it, never mind a pound.
Bump
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