Hi I'm new to all this I'm 37 and started with rls in short spells in my 20s, now for the last year and a half it's been constant I only sleep 2 hours if I'm lucky. I really need some help advice anything as I'm not coping with this and find myself pretty desperate at night. I'm taking magnesium as the doctor said it might help but that's about as helpful as they have been.
How do you cope with rls: Hi I'm new to... - Restless Legs Syn...
How do you cope with rls
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My advice, honestly, insist that your doctor gives you some effective medication, there’s plenty. If he or she won’t, you need to change your doctor ASAP. This forum is useful, but it’s no substitute for a qualified, sympathetic practitioner who has up to date knowledge of the condition, or who at least is prepared to do some research.
I'm definitely going to try having a go at the doctor again as I was under the impression from them that rls will get better but after reading alot of post on here that's not the case and I will definitely need to get something sorted out fast.Rls is just bloody cruel.
It is very cruel. No one likes taking medication for life if they don’t have to, but I’m afraid the name restless leg syndrome trivialises a serious and dare I say it, potentially life- threatening condition, if you take into account related suicide statistics. That sounds melodramatic, but it’s true.
The condition is manageable, but you need expert advice. Surprisingly there still appear to be doctors out there who have little or no knowledge of the condition, or who even doubt it’s authenticity. It sounds like you’ve found one.
COVID probably isn’t helping either, so be assertive. Insist on receiving the help that you are entitled to.
Good luck.
I understand the suicidal part of this I have been close at times when I've not slept for a few weeks and no covid has not helped as my doctors surgery won't take any appointments they they don't deem urgent, when I do get through they fob me off with trying magnesium or drinking tonic water I did try some pills when it first started the ones for parkingsons I can't remember the name but they did not help much. I'm not going to let it drop I will get some answers of of them I have to or what else is there.Thank you for your response it is helpful. X
If you tell them you have had suicidal thoughts, you’ll get some action, trust me.
Just be carefully how you word anything about suicidal thoughts is you dont want to be admitted for a psychiatric hold. Basically you can explain that there's no way you can continue the way things are going but do you have no immediate risk of suicide. I once was not careful with my wording to a doctors nurse on a telephone call and ended up with the police at my home trying to take me in.
I wasn’t suggesting that you pretend to have suicidal thoughts, I just meant if you are, tell someone and you won’t be fobbed off. Better to cause an upset that end your own life. To hell with the wording.
But only if you really are experiencing those feelings obviously.
I am so sorry to hear what you're experiencing.
Just to reassure you that there are things that can help with RLS, none of which it seems, your doctor. dorsn't know about. This is a shame but it isn't unusual, doctors receive little or no training in the condition.
Just to mention there are in my experience two aspects to coping with RLS. One is dealing with the condition by finding renedues to relieve the symptoms.
Most of the responses you will get will be remedies that other people find relieve their symptoms .
The other is psychologically adapting to the fact that you have the condition. What I would say about that is a lot of RLS sufferers seem to scoff at, or take offense with this idea. They wrongly assume that I'm saying RLS is "all in the mind". They may have had that said to them by doctors even. That's not what I'm saying. I'll say little more on that except a lot of people "fight against" or "struggle with" their RLS. I believe that actually makes things worse for them.
Dealing with RLS could be summarised as involving three things.
1) treating the condition
2) preventing symptoms from occurring
3) relieving symptoms when they occur.
Treatment
There is only one known treatment for RLS and that is iron therapy, because the main cause of RLS is iron deficiency.
Treatment depends. on the results of blood tests for serum iron, transferrin and ferritin.
In simple terms : if serum iron and/or transferrin are low you may have iron deficiency anaemia which can be a secondary cause of RLS. The anaemia would need treating.
However even if there is no anaemia, if ferritin is low then you should start on an oral iron supplement. If it's over 75 , but under 200, then other treatment be needed.
See this link.
sciencedirect.com/science/a...
Unfortunately iron therapy can taje months to work.
Prevention
The first way of preventing RLS occurring is to try and eliminate anything that may be making it worse. These are called exacerbating or aggravating factors and triggers.
Some medical conditions can make RLS worse including the anaemias diabetes, peripheral neuropathy, hypothyroid, rheumatoid arthritis, inflammatory bowel conditions, kidney disease and vascular problems.
If any of these are present, then treating them, if possible can reduce RLS symptoms.
Diet can be a factor, especially excess carbohydrate and food elements that you may be sensitive to e.g. gluten or lactose.
Unfortunately, identifying and correcting these can take months ir longer ir may not be possible.
Short term triggers, i.e. with immediate effect include alcohol, sugar and
caffeine (for some).
As regards diet there are some "food supplements" which you can add which can possibly help precent symptoms.
These tend to be only effective if you actually have a deficiency and include vitamins B12, folic acid and D and magnesium.
Taking a strong anti-oxidant can help. Celery juice has been shown as possibly helpful for RLS.
Another set of aggravating factors in RLS is medications. There is a long list of medications thaf can make RLS worse. These are mainly antidepeessants and sedating antihistamunes, but also some antacids, some blood pressure/heart meds, beta blockers, anti-nausea meds and some statins
Sometimes these cannot be avoided and if some can or be switched to sonthing else, it may take tine to have any effect.
As a last resort or as a short term measure whilst other remedies (above) are tried, there are RLS medicines that can prevent symptoms occurribg. These medicines are not ideak, they can create theur own probkens and unfortunately there is a lot of ignorance about them.
Often by the time people with RLS seek help, their RLS is severe and they want a quick solution, it's usualky lack of sleeo.
Drugs can orovide a faurky quick solution..
There are 2 main ckasses if first line drugs for RLS -
The alpha 2 delta ligands (A2Ds). pregabalin ir gabapentin
The dopamine agonists (DAs) pramipexole ropinirole or rotigotine.
The A2Ds haven't been used for RLS for that long but have been shown to be as equally effective as the DAs and are better at promoting sleep. One disadvantage compared to DAs is that may take several weeks to start wig and you have to get the dose rught.
The DAs have been used for RLS for longer and many Drs still prescribe them.
Bluesbo in reply to
You said.........
There is only one known treatment for RLS and that is iron therapy, because the main cause of RLS is iron deficiency.
Surely you are mistaken?
in reply to Bluesbo
No, I'm not!
The main cause of RLS is brain iron deficiency. This is because in people with RLS insufficient iron is able to cross the Blood Brain Barrier (BBB) from the blood into the Cerebrospinal Fluid.
This lack of iron leads to the neurotransmitter dysfunctions associated with RLS.
Numerous studies have demonstrated this and virtually every scientific article on the causes of RLS will mention it first.
Please read this link
sciencedirect.com/science/a...
In addition you may find this link useful. It is the UK NICE guidance for GPs on the managment of RLS. Note the very first principle
cks.nice.org.uk/topics/rest...
I hope this clarifies things
Bluesbo in reply to
Not wishing to ruffle your feathers, I have been prescribed oxycodone and rotigotine. Are you saying this is iron therapy?( Sorry about the feathers thing, I couldn’t resist it.)
I will read what you sent me when I get a moment.
in reply to Bluesbo
Oxycodone is a drug, specifically an opioid. Iron is a mineral.
Oxycodone isn't strictly speaking a "treatment" because it doesn't deal with the cause of the condition it only relieves the symptoms. This is the same for all RLS meds.
If you break a leg, it hurts. A painkiller will relieve the pain, but it doesn't mend the leg.
I've lost all my feathers.
Bluesbo in reply to
I’m with you. It’s a terminology thing. To me if I’m being treated with something, I would describe it as treatment.Silly me.
I come here specifically to read Manerva's post. I wish every RLS forum had an Manerva. (BTW an iron infusion was the BEST thing that ever happened for my RLS. I now supplement orally.) I have saved this post. Thank you.
OMG I had the temerity to question something that Manerva said. The audacity ! Absolutely unforgivable.
I’ll just have to get my advice from the consultants at King’s from now on.
Don’t bother replying, I’m out of here.
Bluesbo, I guess I got better sleep last night. I don't see anything offensive in either yours or Manerva's comments. I have questioned and disagreed with Manerva on numerous occasions, but that just makes us individuals. I appreciate Manerva's comments, I really do. There is a lot of false information on the internet. It nice that someone speaks from a scientific perspective. I would honestly like more in depth discussions and disagreements. It's been my experience that when we learn to disagree agreeably we make the most progress. Regards, and I really do hope you find relief. Hang in there.
Munroist in reply to
Thank you Manerva for this summary, and in particular the perspective that the drugs are just there to relieve symptoms while iron treatment may address the root cause. I am gearing up to talk to my GP about an infusion and this will be very useful to help me argue for it, if I need to…
I have suffered RLS for 25 yrs, gradually worsening and have never had low iron levels!!I am now on targin sr at night 10 mg and 75 mg lyrica
I still have a lot of unbearable nights. Oxycodone should help you but if it’s not slow release it will wear off after 4+ hours
Good luck
Same here, no problem with my iron levels.
in reply to Bluesbo
If you have RLS then unless you know for a fact that your ferritin is level is at least 200 then you can't say your iron levels are normal.
If it is less than that, then you are most likely suffering BID.
I'm sorry of your're one of the few who has a higher ferritin level, i.e. above 200 or even 350 or more. This may mean you'd be in the minority who wouldn't benefit from iron therapy, Even then this isn't necessarily so.
Please see my reply to Nanpat.
in reply to Nanpat
Iron deficiency has been shown to be a major causative factor in RLS. In this case it is specifically Brain Iron Deficiency (BID) NOT iron deficency anaemia, i.e. a lack of iron in the blood.
This happens because in people with RLS there seems to be a problem with the transport of iron across the Blood Brain Barrier (BBB).
If you have a full blood iron panel i.e. serum iron, transferrin, ferritin and haemoglobin if the serum iron, transferrin or haemoglobin is low then you may have iron deficiency anaemia, (IDA). This in itself can make RLS worse.
However if all of these are within "normal" limits then your doctor may say they're "normal" or simply "OK".
This isn't actually helpful because a normal level of ferritin is anything above 15 (fifteen). Some doctors I've met think it's "OK" if it's at least 50 (fifty).
For somebody with RLS this is not the case.
It has been found that for somebody with RLS to have the same level of brain iron as somebody who doesn't, then their ferritin has to be at least 200 (two hundred).
Therefore if your ferritin is below 200, irrespective of whether you have IDA or not you will most likely have BID.
The recommendations are that if you have RLS and your ferritin is below 75 then start taking an oral iron supplement in order to raise your ferritin. However if it's above 75 then it's a lot more difficult to raise it further by taking iron orally. In that case you would need an iv iron infusion.
60% of people having an IV iron infusion gain benefit from it to the extent that they don't need to take any medication. Another 20% gain partial benefit. Unfortunately 20% gain no benefit. There's also no predicting who will benefit and who won't.
One of the problems is that ferritin levels can be affected by other factors e.g. inflammation. Also ferritin in the blood is not a brilliant indicator of brain iron levels.
I've come across many members who've said they haven't had any problem with their iron levels and this is often because their doictor have told them their ferritin is "normal" or "OK".
My own doctor told me my ferritin was OK when it was under 50!
The evidence shows that if it is under 200 then you most likely have BID - causing RLS.
Note that all I've written is a reiteration of what the literature says. As an example please read this link.
Sorry my battery went flat mid sentence!
I must be writing too much.
To cut a long story . A Dr should offer you a choice of A2D or DA BUT be aware that DAs are no longer recommended as the first drug of choice as they cause major complications. DAs commonly cause "augmentation", the risk of this with A2Ds is much less.
See this link
pubmed.ncbi.nlm.nih.gov/274...
Some doctors ptescribe muscle relaxants or sleeping aids fir RLS (because RLS causes insomnia), e.g. clonazepam, but these don't really prevent symptoms.
I'm sorry your doctor doesn't know anything about RLS. You may have to educate them.
Most of what I've written is based on authoritative literature, you may find it necessary to show some of this to your doctor. According to national and international.recommendatios, your dovtor should have considered most of what I've written i.e. iron therapy, aggravating factors and the drugs.
You can refer them to the links I've given.
There are other links I can give you, but these depend on which country you live in
I hope this gives you some hope. There's a lot to learn about RLS. This is just a starter.
Sounds like advice you would get 25 years ago from a physician. Bummer deal . I would ask for a referral or make some cold calls. I might even walk into a local sleep clinic that do overnight testing. Even if you just get a receptionist or office manager I bet they could give you a few names of doctors in the area that patients may have had good things to say about.
Just to say one of the links I gave you may not have worked
here it is again
sciencedirect.com/science/a...
here also is another link you may find helpful
uptodate.com/contents/treat...
Just be aware that members will possibly advise you take a drug or even a specific drug. Even if you do choose to take a drug, there are other remedies that can be used at the same time.
I do sympathise with you as I have had it for about 50 years & it's worse than ever now & I am at the end of the road on the Meds. Trouble is nobody has a cure & most GPs are clueless about what to do. This forum has the best 'experts' as they are living the reality & have some relief from some meds & it varies so much. As you are so young you may get lucky & a 'cure' is discovered before long. Best of luck.
Something so invasive of your life needs specialist attention. I also take magnesium citrate on the advice of my neurologist but I've also been on pramipexole for about ten years. Your GP can't prescribe pramipexole, and you should ask to see a neurologist as soon as possible. Having said that, you might have a long wait depending on your area. Pramipexole might not be the solution for you but you need an expert to decide. A GP doesn't have the specialist knowledge.
in reply to Trembly
Just to clarify and avoid any confusion. Primary doctors can prescribe pramipexole. It is NOT necessary to see a neurologist to get a prescription for pramipexole.
In the UK we have national guidance for primary doctors (General Practitioners = GPs), on how to manage RLS . The guidance specifically recommends that a GP CAN prescribe pramipoexole or a gabapentinoid. If you live in the UK you can check this for yourself by following this link
cks.nice.org.uk/topics/rest...
Unfortunately this guidance doesn't fully comply with the latest recommendations for the first line treatment of RLS which state that dopamine agonists (DAs) such as pramipexole, (ropinirole or rotigotine) should NOT be the first treatment for RLS.
This is because of the high risk of suffering a major complication of taking a DA, i.e. Dopaminergic Augmentation.
Please see this link
pubmed.ncbi.nlm.nih.gov/274...
The longer you take a DA and the higher dose the higher the risk of augmentation.
The risk of taking 0.5mg is 7% year on year.
Hence if taking 0.5mg after 10 years the risk is 70% and at 15 years it is virtually inevitable you'll suffer augmentation.
If you're taking more than that then the risk gets even higher.
IN addition, a neurologist specialises in neurology they're not RLS specialists, many may find that a neurologist knows no more about RLS than a primary doctor.
My apologies for challenging what you've written, but I think Batars needs to get full and accurate information.
I had no idea my knowledge was so incomplete. I will think twice before contributing advice next time but clearly magnesium citrate is an inadequate treatment and a specialist opinion would be a step forward. If not a neurologist, then whom?
Trembly, it seems the medical profession has know about RLS for quite some time. The connection to iron is also well known. However it doesn’t get the same marketing that Dopamine Agonist drugs get. My recommendation is to start with the experts at John Hopkins Restless Leg Foundation .
Print it out, take it to your Doctor.
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