Introduction from a newbie

Hi, thought it was about time to introduce myself. I’m a 62 year old male, I consider myself to be fit and healthy, having said that I was diagnosed with Type II diabetes in 2003. I was fortunate enough to control it by diet initially but it wasn’t long before I needed medication. I currently take Metformin, Simvastatin, Gliclazide & Victoza.

A couple of years ago I started to find that my legs were aching and that my feet felt like they were on fire (although they’re not hot to the touch) and I put this down to being on my feet all day at college. I then found that the leg pains became more persistent, I would sit in the evenings fidgeting about because of the pains. It wasn’t long before I then started to encounter leg pains and burning feet keeping me awake at night. I had my joints checked and they’re all as they should be (knees aren’t exactly perfect but that’s due to playing rugby), I had a Doppler test, no fault found. I had blood tests as part of my annual diabetes check-up and it was found I had a B12 deficiency, my doctor prescribed a course of Cyanocobalamin.

My initial thought regarding my pains was that I had neuropathy, my doctor doesn’t believe that this is the case but that I am suffering with Restless Leg Syndrome. I hadn’t heard of RLS before and when the doctor said it I have to admit to having a giggle, however, after doing some research, joining this site, speaking to people and continuing to endure the pains and burning sensations it isn’t a laughing matter.

I’m wondering if there is anything I should or shouldn’t be doing or taking. I’ve tried paracetamol, voltarol gel and even coconut oil, no relief from those.

Thanks, Paul.

23 Replies

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  • Hi Paul ,

    Welcome to the site. I'm not sure if the pains and aches you describe are RLS and as most GPs are not very knowledgeable about RLS I would ask for a referral to a specialist neurologist.

    Do you have an irresistible urge to move your legs and do the sensations stop if you move/walk about? That's more indicative of RLS.

    Maybe it's linked to poor blood flow to legs caused by the diabetes 2?

    I'd definitely ask for referral to both your diabetes specialist and a neurologist.

    Good luck,

    Jools

  • I agree.

    Also look at any triggers- medicine and food - that might be setting it off.

  • I've not found anything that stands out that could be a cause yet ....

  • Thanks Jools, thanks for your reply.

    My blood flow has been checked (doppler) and no fault found.

    Moving about does aleviate the pains slightly. I am a fidget by nature, sitting still in one place isn't easy, I get bored! ;)

    I have a call with my doctor this week so I'll add the suggestion of a referral to a neurologist to the expanding list.

    Thanks, Paul.

  • hi Paul & welcome to the site, it doesn't sound like RLS to me, but theirs different forms of RLS.like joolsg says &Madlegs1 RLS you cannot keep your legs still, only by getting up & walking about, you cannot get any sleep, because the RLS takes over, anyway Paul hope you haven't got RLS because its horrible. But welcome to the site anyway

  • Many people have found Metformin and statins to TRIGGER or worsen RLS. You're taking both. AND RLS is very common among diabetics - meaning type I. Severe calorie restriction, day in day out, with nutrient dense food (think Kale shakes and ocean fish) might be one alternative.

  • By severe I mean about 1200 calories a day for men. It's not about weight loss as much as caloric restriction which is supposed to up-regulate dopamine receptors which are down-regulated in those of us with RLS.

  • Thanks for the reply, I like Kale so I'll give that a go. When you say ocean fish is there any one particular fish that is more advantageous over any other? Thanks, Paul.

  • No, I was saying that more to indicate that calorie restriction does not include cookies and pretzels because if you restrict calories then it has to be nutrient dense food like dark green leafy vegetables, some seeds, and some animal protein. Good animal protein like grass fed beef and ocean fish.

  • Thanks, Oolong ,for that- I had a feeling some of those might be "hazardous" - was just too lazy to go check them out.

    😎

  • How r u doing? Has your iron stores come down any?

  • Thanks Oolong - still no change- access to consultants in Ireland is painfully slow😡.

    So no progress. I'm reckoning on maybe getting some blood taken for a few weeks to see if I become anaemic - in which case it would point to high ferritin rather than raised iron- which- as long as I remain asymptomatic , should not be a major problem .

    I'm having problems in getting a reliable test for inflammation - any suggestions?

    Cheers .

  • Holy crap, so you can actually have high ferritin but normal to low iron!!! And this all started with your accident and subsequent surgery. Markers for inflammation or should I say name of the tests are "Sed-rate" "ANA - which stands for anti-nuclear antibodies" and "C-reactive protein." All three tests should be covered - in my opinion. They should also do the standard tests for liver and kidney function. In the meantime what other symptoms are you experiencing that might suggest systemic inflammation? Anything from fevers to fatigue to all-over body aches can come with elevated sed-rate or ANA. I believe sed-rate can be elevated even if just one organ is extremely inflamed as for instance your gall bladder.

  • I'm in fairly constant pain from osteoarthritis of lower back, meralgia parasthetica in thigh, bursitis on both hips- preventing sleeping😩 and just general soreness of ribs from being smashed up in accident .

    Otherwise I'm grand!😆

    Thanks for the info on inflammation markers - I'll push for them harder- my doctor says the CRP one isn't carried out here any more.

    Cheers.

  • Well Madlegs it doesn't stop you from doing the can can 😉x

  • Strange, I have those conditions. Bursitis is mild though but I go thru flares. I'm not really a side sleeper, plus I have a softish latex foam mattress which I believe helps. The left side of left thigh is numb, not sure of cause. And degenerative disk in lower back plus arthritis. Lower back is only painful in morning, generally. I would consider the RLS worst of all if I didn't have a treatment that works for me. I rub DMSO into my lower back and get good relief from that. I rub DMSO into any area of my body that hurts. It is NOT approved as a topical in US. It is considered a wood cleaner. DMSO is a carrier substance. Meaning whatever is on your hands when you rub the DMSO in will be carried in as well. I'm not afraid but I cannot recommend it for this reason. I know that urologists will instill DMSO into the bladder of patients with interstitial cystitis. But that is "pharmaceutical grade." I buy a good brand and keep my fingers crossed ;)

  • But as long as you have to be on Metformin and statins you may have to take something to counteract. A lot of people on here, myself included, find that one capsule of iron (preferably ferrous bisglycinate) taken at night (NOT DAY) on an empty stomach away from all supplements and medications will provide a night of relief

  • Also, since you were deficient in B12 you might also be deficient in iron. So then you get a double bonus by taking iron at night. Get permission from your doctor. So far I have never heard of anyone's doctor telling them not to take 25 mg of iron. Of course if your iron stores are abnormally high say because you have hemochromatosis then I assume your doctor will say not to take iron.

  • Put "Amazing, bisglycinate and RLS" in search box above and you can read all about it.

  • Could be related to diabetes or prescribed meds. My experience is that doctors are as uninformed on diabetes as RLS. Carbs and sugar do not make one insulin resistant. Fat does. Dr. McDougall explains this and how to get off meds in many articles at

    drmcdougall.com/health/educ...

  • You could have both RLS and neuropathy. Or not. I agree that you need to be checked out by a neurologist, etc.

  • Following discussion with Dr, Iron is ok, offered other meds, have refused (I take enough for my diabetes!) and have got agreement to be referred to a neurologist .... now playing the waiting game ....

  • Do you have the uncontrollable urge to move? And is that urge relieved when you stand and walk?

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