For the past few years and almost every night, I get an uncontrollable urge to stretch my legs and feet - specifically my feet and ankles. I get an uncomfortable feeling where the only relief is to stretch my feet out. I've done searches on my symptoms and I keep getting RLS as a possible condition, however I don't get the "crawling" feeling that many others get - it's more of a dull pain in my feet where aggressive stretching is the only reprieve (albeit temporarily). Does anybody else with RLS get this feeling and these symptoms?
I'm a 29 male and I was also diagnosed with ulcerative colitis 2.5 years ago. Through medication (which I no longer take) and reducing stress, I no longer have the horrible symptoms of ulcerative colitis. However, I understand that there may be a link between an iron deficiency and RLS, so I'm wondering whether the negative effects that UC has on nutrient absorption could also be causing my symptoms of RLS. Does anyone here have UC as well as RLS?
Interesting, I've also started a plant-based diet about 3 weeks ago and have also very recently experienced heightened RLS symptoms. Could this be a coincidence or can a vegan diet contribute to RLS?
Finally, it's also important to mention that I've been travelling the world for 6 months (currently in Thailand and going to Hong Kong, China, Philippines and then India in the next 6 months), so I don't have access to my regular doctor in England. And I don't know whether I'll be able to find a reliable doctor on my travels.
Can anybody kindly offer any advice on (a) how to get a diagnosis of RLS without physically seeing a doctor (b) how to get blood samples tested for RLS (c) any suggestions for treatment, medical or otherwise.
I appreciate any help and I look forward to hearing from you.
Many thanks!
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S34nandco
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There are no blood tests for RLS. It’s diagnosed by taking a case history. It is an inbearable need to move and movement ( either walking around or moving your legs) provides relief. Some people do experience RLS as pain in their legs so you may have it. Does it stop you sleeping or wake you from sleep?
As you’re travelling, I suggest you concentrate on alternative treatments.
You may very well be anaemic due to the ulcerative colitis so if you can get a blood test done at a clinic then do so. Your serum ferritin should be above 100 & if below that you could safely use ferrous bisglycinate skin patches ( I get mine from PatchMD in the USA and they post to here in UK) every other night to get your levels up. That may be gentler than taking oral iron given your history. Arrange delivery to somewhere you will be staying for a while.
Magnesium is also very helpful for many RLS sufferers and hot baths at night.
Compression socks will also help.
Diet often helps enormously and you mention your RLS has worsened since going vegan.
Maybe it’s because you are not getting enough iron? I have actually found going vegan has improved my RLS.
Stress is a big factor in RLS so I advise you to stop worrying for now- the pain could simply be from doing a lot of walking.
Try to enjoy your travel experience - you can keep a diary of symptoms/ food/ etc to see if anything makes the pain worse and when you’re home, see a GP.
Obviously if the pain worsens or becomes unbearable, see a doctor wherever you are.
Have a good read of this site as there’s a lot of useful info.
It does stop me from sleeping sometimes or at least makes it very difficult but I don't have to get out of bed - I just constantly have to stretch and pull my legs and feet.
Thanks for the advice on diagnosis and treatment. I will try and see if there is a clinic where I can take a blood test for aneamia. I'll also try those treatment suggestions too.
If I were you I would get a blood test to have your iron checked. I did and I was deficient. I was prescribed iron tablets and my Rls disappeared after 6 days. I went from having it every night for 10 years to nothing since taking iron tablets.
If you're up for trying a change of diet, you may like to try to avoid sugar and foods which might cause your blood sugar to peak late at night. Things like deep fried high carb foods. Chips etc. It may help the rls and the colitis. It may not, but it won't do you any harm.
I would try, in advance, to find practitioners in the places to which you are travelling. I would not make the assumption that you will not find highly competent personnel.
And if you explain your symptoms as being very like RLS, and take information on Brain Iron Deficiency, (from which we almost all suffer as a 'first cause') any half-decent doctor will agree to a serum ferritin test. This is not always a pointer, but it may be.
The next step, and immediate, would be to ask the doctor for a diagnostic (not palliative) dose of a dopamine agonist (DA) like pramipexole. (In the East, this may be Pexola, made by Boehringer Ingelheim). Just ask for, say 0.125mg X 4 tablets. Take one at about five in the evening. If your symptoms disappear, then it is RLS. If a DA works, do not be tempted to continue, it is full of snares, as you will read on this site.
You are young, so if you have RLS it will present as early RLS. MIne was just like yours, feet and ankles, constantly moving, and needing to twist and stretch. (I never understood the 'crawling' description either) Although I am now old, with the full catastrophe, I still have the foot thing. I need to stretch my feet all the time. It moves from the feet, to the calves, to the thighs, very slowly over time.
If the ulcerative colitis has caused an iron deficiency, replenishing iron could end it all for good. But if absorption is compromised, and your serum ferritin is very low, ask for an IV iron infusion of Ferric Carboxymaltose, 500 X 2 over five days. The iron patch Jools mentioned also sounds great.
In India, if you go to an Ayurvedic practitioner, you may be treated with Mucuna Pruriens, which is a herb which contains l-Dopa. (In fact, you should be able to get this anywhere in the East, made by HImalayan Herbals). It is available OTC, and is inexpensive. It is not an ideal long-term solution, no dopamine is, but like a dopamine agonist it may well be diagnostic, and point you to a proper diagnosis. The incidence of RLS in India is fairly high, 'though not as high as in the West, so you may find a knowledgeable doctor.
Even should you get a proper positive diagnosis, and you replenish iron stores, it would be good to remain on natural solutions such as Jools' suggests until such time as the symptoms interfere radically with your life. Particularly, discover every possible stretch for your feet, ankles and calves, and do them religiously during the day as well as before you retire. Take tons of good magnesium and B12, keep your diet spotless, avoid caffeine and sugar, stay away from antihistamines and SSRIs. In your present diet, you will get almost no iron, for haem iron is what we best use, plant iron does not help us much, we cannot use it.
Then medicate, by all means, if and when things get rough, for this is not a kind disease, but wait as long as you can. There is no free lunch here.
In a relatively short time, I predict, we will have better medications than we do now,
Thank you so much for all this useful information. I will look into all of your suggestions - I really hope I can nip this in the bud before it gets any worse. I also hope your situation improves soon.
Sadly, if you have familial RLS, which I do and you may, then it is a neurological condition that is in the genes, which get expressed in some but not others. Ask around in your family, more particularly amongst the women, to see if any had 'funny legs'. It will usually start to be apparent at about your age.
If it is not familial, and it is RLS, then it may have been started by a lack of iron and the inability to absorb it. This is what happens in the RLS of pregnancy, which is very common.
Joolsg has given you a great reply - I’d only add 2 things - RLS is very individual, so both your symptoms and what relieves them may not be “just like” anyone elses’s - we learn to live with some ambiguity. Also, you could possibly have a severe iron deficiency, and not “true” RLS, which is a neurological issue. Only a visit to a good neurologist or a sleep specialist very experienced with RLS can give you a diagnosis.
So as Joolsg said, work on alleviating your symptoms while you’re away. Then follow up with a specialist as soon as you can after geting home.
Avoid typical RLS triggers such as caffeine, alcohol, sugar, excess salt, possibly gluten for some people, older decogesttents, ice cream, medications of various types. Go to rlshelp.org for complete list. My RLS improved when I went plant based whole food which in not necessarily the same as vegan. -- come and chips might be vegan. Get moderate exercise such as walking on you trip. And stretching.
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