As the title says, I’m new to the forum and very new to RLS.
I feel that I’ve been suffering for around 5 years, but of recent it’s getting worst. I have been referred to a chiropractor, but apart from a nice massage, this isn’t helping..
So, I’m 31 years old, 6ft 4 and ‘normal’ build. I lead a fairly healthy lifestyle but probably don’t exercise enough. For as long as I can remember I’ve had trouble sleeping, As soon as I feel comfortable I get leg pain and ‘twitching’. The only thing that seems to temporarily help is getting out of bed and stretching. I have very very tight ham strings and am wondering if this is related?
Nobody medically has told me I have RLS and I’m wondering how I can get this ‘diagnosed’ and start getting some help for the pain - is it simply a trip to the GP again? I’m lucky enough to have private medical care through work, perhaps I should approach them?
I’d really appreciate any helps or tips on where to ‘start’ as the restless nights and pain are really starting to bother me!
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Mpdeadman
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There are certain drugs and supplements that make symptoms of RLS worse. Are you taking either melatonin or antidepressants? Antacids or antihistamines? Any spinal injuries? Are you eating most of your daily calories in the evening?
The first step should be to check ferritin levels in your blood. Your regular doctor can do this if you can talk him or her into it. Raising iron levels helps at least 50% of sufferers. There are drug treatments, but none of them last forever, and if you read this forum, you'll find horror stories. Stretching and holding for 2 minutes has helped some of us, and dietary changes help others. As LonePine said, certain other drugs, such as antihistamines, melatonin and antidepressants can also aggravate RLS.
Lansoprazole : a proton pump inhibitor antacid known to make RLS worse
Atorvastatin ; known to make RLS worse
Spironolactone : known to make RLS worse (or even cause it)
Candesartan : known to make RLS worse
Clopidogrel : known to make RLS worse (or even cause it)
A Google search with the drug name plus RLS will reveal other drugs.
Good luck, and keep coming back here. People are very helpful.
Thanks for sharing that I've been suffering for 5 years and recently stopped all meds which had helped a lot but still get a lot of pain some days.I knew about the other meds but didn't know lansoprazole also was amongst then. Is there an alternative?
Lansoprazole lowers the acid level in your GI tract, and the alternatives would do the same. The low acid level could be having an inhibitory effect on iron absorption, but you could consider asking the doc to check ferritin levels again. You don't want to stop a medication that is helping you and doing no harm. Maybe it's not connected to your RLS.
A little more...Here is a reply written by someone else on this forum that I found very helpful.
Have blood tests for serum iron, transferrin saturation, ferritin and hemoglobin.
If the first three are low, then you have general iron deficiency. In addition if hemoglobin is also low then you have iron deficiency anemia. If this is the case then you must have iron therapy to correct this blood deficiency.
However, if these are all in the "normal" range then it's the ferritin level that becomes very significant as it's been shown that raising the ferritin level to at least 100 and ideally over 200, this can relieve RLS symptoms. The recommendations are therefore that if your ferritin is less than 75, then start taking an oral iron supplement.
Please note that your doctor might not consider a ferritin level of less than 75 as being low. It would have to be less than twelve!
Ropinirole is form a class of drugs known as dopamine agonists (DAS) and when first used, these can be very effective for RLS. When I first started taking a DA, it totally got rid of my symptoms at a very low dose. Most people taking a DA at first find these drugs miraculous.
However, it's usually the case then that a DA begins to fail and often the response is to increase the dose. This is a big mistake. The maximum dose of ropinirole for RLS is 4mg and this should NEVER be exceeded. RLS experts however would say that even half that is too much. This is because it can lead to a major complication called augmentation.
This is where the drug, instead of helping with symptoms, actually starts to make them worse. A sure sign of his is that symptoms which used to start in the evening begin to start earlier in the day and may also spread from the legs to other parts of the body.
This is VERY common. So much so that DAs, (pramipexole, ropinirole or rotigotine) are no longer recommended as the first treatment for RLS.
The clinical consensus always starts with a morning fasted full iron panel. Ferritin is NOT enough, Transferrin Saturation Percentage is just as if not more important than ferritin (Dr. Earley). Skip this step at your own peril. Ferritin should be above 100 and closer to 200. TSP should be above 35%
The single most consistent finding and the strongest environmental risk factor associated with RLS is iron insufficiency.
"Since the 1950s, it has been known that iron therapy, even without the presence of anemia has benefits for RLS symptoms. Studies have shown a strong relation between body iron stores as determined by serum ferritin and the severity of the RLS symptoms. A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy (325 mg ferrous sulfate twice a day on an empty stomach) on average improved RLS symptom after 3 months. "
Your GP Is the place to start for diagnosis and treatment although you may find they are fairly ignorant of this condition. The link below is to the UK RLS site and contains information specifically on diagnosis but the rest of the site is very useful and I would recommend you read that as well as the posts on this forum.
For treatment the latest algorithm from the Mayo Clinic as recommended in other posts is very good and the simplest therapy with the least side-effects is making sure your iron is at a decent level, for RLS sufferers over 100 µg/L. You will need to get a blood test organised with your GP to understand where you are now but be aware that the “normal” range can be as low as 25 which is simply not suitable for RLS sufferers.
Personally I wouldn’t expect tight hamstrings on their own to cause RLS but they generally aren’t a good thing for posture and can contribute to knee and back issues in the long run so a stretching regime would probably be beneficial although I’d take it easy because you’re hamstrings are very strong and if you overdo it it can be quite painful. Stretching can also relieve temporarily some of the RLS twitching so there could be a double benefit.
Thanks all! I’ve booked an ‘advanced iron test’ and have also booked to see a Neurologist to discuss next steps etc. I’ll keep you updated with my progress.
One other thing that I didn’t notice anyone else telling you— keep a food and activity diary. But especially focus on the food (or anything you ingest) since you are just beginning to try and figure things out. A couple people suggested it to me when I first joined the forum and keeping a food diary was the very first thing that helped me feel like I was being proactive in finding a solution to this insane predicament. Right away I was able to notice how having pastas or dairy late in the evening was problematic. And certain alcohols. We are all different, but many people consistently seem to find sugars to be an aggravating factor. As you begin to see patterns emerge you may want to add activities (like exercise or meditation) and even work/life stress levels to your diary to see if they play a role. Exercise has proven very important to my ability to sleep, but only if my heavy exercise is in the morning. And I have to stretch before bed. I suspect there are as many varied routines for getting through the night as there are members. Pretty soon you’ll have your own and I really hope it happens quickly so you can get relief. Best of luck and keep us posted. This community was a game changer and lifesaver for me. I hope it helps you, too.
Just to emphasise, be VERY cautious if your GP prescribes any dopamine agonist drug such as ropinerole (requip), pramipexole (mirapexin) or neupro (rotigotine). As others have said, these drugs can seem like a miracle at first but they almost inevitably cause symptoms to worsen in due course and are extremely difficult to discontinue. RLS experts no longer recommend them as a first line of treatment (in many cases not at all) and some consider that they cause permanent damage to dopamine receptors. They also render other treatments (such as iron therapy or alpha2delta ligands) less likely to be successful.
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