I'm a 33 years old male who have been suffering from restless legs since I was 11 - long before I knew there was a thing called RLS. My grandmother and mother both have chronic restless legs as well. My condition is quite bad. I have restless legs every single day, and it's wearing me down.
I've been on Ropinirole in the past, but I never really felt any improvement. I was never really been properly diagnosed however. The way I got the drugs was that I went to a psychiatrist, told them that I've got restless legs, they went "OK!", and gave me Ropinorole.
I want to have proper tests done, and so I post here to get your feedback on which tests I should take. I figure this is an important step to treat it, if possible.
- Iron and magnesium blood levels (to identify the need for supplementation)
"Blood iron" isn't a useful test on its own. A test for iron deficiency anaemia isn't at all useful for diagnosing RLS. It's often of no use even if you have a confirmed diagnosis.
IF you DO have a confirmed diagnosis then a blood test for "ferritin" will be useful in assessing your brain iron levels whiuch is a factor in RLS. However that is not diagnostic of RLS.
Blood tests generally will only identify factors affecting your RLS, AFTER diagnosis.
Thgere is no "normal" scan or physical test that can diagnose RLS.
The diagnosis of RLS is based on family history and, as raffs says, on the symptoms.
There are 5 internationally validated diagnostic criteria for RLS. Diagnosis can be made by comparing your symptoms to the diagnoistic criteria. If they match ALL 5 criteria then you probably do have RLS.
If there's nay one of the criteria your symptoms don;t match, then you probably don;t have RLS..
Note that the principal defining symptom if RLS is the "urge to move", simply put, if you don't have the urge to move. you don't have RLS. If you do have it, it isn't necessarily due to RLS.
For RLS it's Brain Iron Deficiency (BID) that's a factor, not necessarily iron deficiency anaemia. Anaemia can cause RLS like symptoms for some people, in which case it may be "secondary" RLS i.e. RLS caused by some other medical condition such as anaemia, thyroid dysfunction, diabetes or kidney failure.
However, in "idiopathic" (alias primary) RLS BID can occur even if there is no anaemia. If you have a family history.of RLS and no anaemia ( or diabetes etc), then you have idiopathic RLS.
In which case it is a blood test for "ferritin" that can indicate whether there might be BID or not. Most doctors would agree that for someone with RLS it's best that ferritin is above 50ug/L. However there is evidence that raising ferritin to 100ug/L is of benefit for 50% of RLS sufferers. Some RLS experts now say 350ug/L.
Unfortunately, some doctors just say your ferritin is "normal", but that's no help for someone with RLS as normal can be as low as 15ug/L.
If the ferritin is below 100ug/L then oral iron supplements can help raise it. This isn't easy or quick to do this way. The reason it's not easy is that the body regulates how much ingested iron is absorbed. Unless you have a condition called haemochromatosis, you cannot absorb too much so there is no possibility of iron overload.
It is possible to get iron overload with an IV infusion because it bypasses the absorption regulation mechanism. Obviously anybody administering the IV will be aware of that possibility and a MRI scan can detect it.
However, depending where you live you would be quite lucky to get an IV infusion for RLS. In most places you either need health insurance that covers it, or you have to pay.
Be aware that even if you have a family history of RLS it doesn't necessarily mean you also have it. It still depends on whether your symptoms match the criteria.
It's possible but unusual for someone to take ropinirole for RLS and for it not to work. It is one of a group of medicines called "dopamine agonists" (DAs) that are used for RLS, the others are pramipexole and rotigotine.
That ropinirole didn't work for you may be because the dose wasn't high enough, you're one of the few people a DA doesn't work for or, you don't have RLS.
If you do have idiopathic RLS, besides iron, there are other non pharmacological measures that can be tried to control symptoms. There is no cure.
In summary these are
as well as iron, magnesium, vitamin B12 and vitamin D can help if you have a deficiency in these. Celery juice (tablets) may help.
There is a host of "aggravating" factors you could avoid. These are "triggers" that can precipitate RLS or make it worse This includes a range of medications, but slso alcohol, caffeine and refined sugar.
Some people find various diets help.
RLS sufferers usually try several things to control their symptoms and some things suit some people and not others.
Definitely, the first step is once RLS is confirmed according to the diagnostic criteria is have a blood test for ferritin snd if your doctor suspects, a thyroid function test and diabetes
If ferritin is below 100ug/L an oral iron supplement can be used to raise it. It could take months. Iron overload is highly unlikely, the problem is usually not absorbing enough rather than too much.
Just to make you aware, if any doctor does suggest you try a RLS medication, DAs (as mentioned anove) are not advisable as the first medicine to try because there is a high risk of complications and there are alternatives.
Our bloods can show decent iron levels however our brains are deficient and as far as I know there is no way to ascertain the levels in the brain.
And as Manerva says they are not used or useful in diagnosing RLS.
in reply to
There are ways of ascertaining iron levels in the brain, but I think the easiest way requires that the brain has to be removed!
I believe there's also a special kind of scan, but I dont think it's available to common folk like me.
in reply to
Colour me presumptuous but I figured that Swincei has plans on living and having your brain removed would hamper that....... unless you are a Tory politician. 😜😁
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Having the brain removed might be a bit of a headache for some people. I'm not sure if politics has anything to do with it
However the scan could be less feasible. How big a magnet can you get?
Just picking up on one point you make in your post, usually a dopamine agonist medication, such as the ropinerole you were prescribed previously, will stop rls symptoms in their tracks - initially. I believe that there are rare cases where a dopamine agonist does not result in an improvement but it is unusual. Maybe, as your symptoms are severe, the dose was too low but in most cases even the lowest dose has an almost miraculous effect, albeit with the appalling sting in the tail down the line in the form of augmentation.
Apart from that (arguably unhelpful) observation, I would agree with the others that there is no specific diagnostic tool for rls and generally a diagnosis is made from a description of symptoms. It is useful to get serum ferritin tested however because increasing a low serum ferritin (some experts now suggest that over 300 should be aimed for) results in improved and even sometimes eliminated symptoms in many (though sadly not all) sufferers.
Are you taking any anti depressant meds by any chance? You mention a psychiatrist diagnosed you. Most anti depressants worsen ( or cause) RLS. Also, as Involuntary Dancer has advised, usually Ropinirole helps RLS immediately and is often used to confirm the RLS diagnosis. If it didn’t help it could be that you don’t have RLS OR that anti depressants ( like Amitriptyline) are worsening it.
Thank you all for your replies. It was very helpful.
I had my ferritin levels tested, but everything looks normal.
I started taking medication specifically to treat RLS.
I started on 0.125mg of Pramipexole. My symptoms become much less intense. I still had symptoms every day, but it was not at the level where I would have to go outside and walk around just to be in my own body.
I then added 300mg of Gabapentin to that. For the two weeks after that I had almost no symptoms!! For the first time in.. ten years(?) I could go to bed and fall asleep right away. It was amazing.
Unfortunately the effect quickly wore off, and for the last three weeks the symptoms have been coming back. Not as intense as before I got started on Pramipexole, but still I'm disappointed. Is this what's called Augmentation?
My doctor agreed to increase the dose of Gabapentin to 600mg. It's still too early to tell if that's causing an improvement.
I'm worried that I'll have to keep increasing doses to avoid symptoms...
Unfortunately, achieving a good line of treatment for RLS can require a lot of experimentation and tweaking. Most people do achieve something workable for them in the end so don't feel hopeless. However, it is an area where the medical profession tends to have limited understanding and it is important to inform yourself all about the condition and the treatment options even if your medical advisors seem to know what they are doing. This is especially so for you given that you are so relatively young, seem to have a fairly severe presentation of the condition and need to find a treatment regime that will serve you for many years.
That is a relatively high dose of pramipexole you were started on and it is surprising that it has not resulted in a substantial alleviation. The starting dose of pramipexole should be half of a 0.125mg tablet (I assume you are in US or Canada as these are American doses). I would be very concerned about continuing pramipexole, especially as it is not having a substantial effect - check out the many posts on augmentation and long term or permanent damage caused by pramipexole and ropinerole. It is unusual for augmentation to set in after only a short period of taking the drug but it is certainly not unknown and there are a few people posting on here who experienced augmentation after only a few weeks on the drug.
Did you get the actual figure for your serum ferritin? 'Normal' is different for rls sufferers. For non-sufferers 'normal' can be as low as below 20 but most experts in the treatment of rls suggest that serum ferritin of patients should be above 100. You should ask your GP for the actual figure if they haven't given it as they are often ignorant of this issue.
It is well worth trying to increase the dose of gabapentin as it is successful in treating rls in many sufferers and, if nothing else, it is worth eliminating it from your field of enquiry. However, in your shoes, I would not continue with the pramipexole. Another option for treatment is opioids.
You should also research the potential exacerbants, such as amitryptaline, SSRIs and anti-histamines (benedryl), in case you are inadvertently making the condition worse.
> Did you get the actual figure for your serum ferritin?
It was 92.6. Do you think it's worth trying oral iron supplementation?
> The starting dose of pramipexole should be half of a 0.125mg tablet
Really! The smallest pill is 0.125mg, so I was assuming that it was a fairly harmless dose.
> It is well worth trying to increase the dose of gabapentin
Will gabapentin not cause augmentation?
> Another option for treatment is opioids.
That sounds like just a whole can of worms... Are people really using opioids to treat RLS?? Isn't it super addictive?
> You should also research the potential exacerbants
I was taking benzodiazapines for many years, prescribed as treatment for RLS. Only after many years did I become aware of the MANY MANY adverse effects that long term BZD use has, so I stopped taking them recently after almost a year of tapering. My doctor tells me that it's quite common for RLS to get worse when tapering off BZDs, so I hope it will subside a bit with time...
I'm also taking 50mg of trazodone to make me sleepy, but it's not working very well, so I think I'll stop taking those pills soon.
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