Hi, I'm new but my RLS isn't. - Restless Legs Syn...

Restless Legs Syndrome
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Hi, I'm new but my RLS isn't.

Hi. Just found this site after what feels is the thousandth time looking up RLS. I keep looking to see if there has been any miraculous cure for it, but to no avail.

I've had RLS since approx my mid tens, I'm now 50. It's only been in recent years that I found it actually had a name, and that I wasn't the only one suffering this. And suffering really is what we do. Back then my Mum would give me half a tablet of ativan, not knowing the addicitive qualities that has. I didn't become addicted but it did work. Also she had arthritis in her knees which was helped by using 1% ephedrine solution blended into aquaous cream. So I used that until they stopped producing it. That worked too.

Because my RLS has become more severe now I am on duloxetine 120mg . I was originally put on this due to morbid depression and was doubled to the 120mg to cope with the RLS. It is not working. I also take between 300mg and 600mg of tramadol daily depending on the pain level of my arthritis and RLS. I rub 10% ibuprofen gel on my legs at night. This does help.

What I didn't realise until I came on here tonight is just how far reaching the restlessness goes. Such as in your arms, which is explaining why recently I've been having these symptons in mine.

Excuse the long post but I just wanted to put everything out there once and be done with it. I've never come across another person who has this so I am thankful to have found this site.

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Hi Patricia, welcome glad you found us! I am going to try for some sleep as I have to be up in couple of hours ! Will catch up with you tomorrow we all understand here x

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Sorry to hear you have been suffering for so many years from RLS. It may sound overly simplistic, but if you would go on a plant-based diet for two weeks (only two weeks) and eliminate any oils and processed foods, I think you will find that your RLS would go away. I had it for years and it drove me crazy. Changed my eating and it is gone, gone, gone. Then you can add back foods, one every four days and see what makes it come back.

Good luck

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Although not perfect my diet is quite restrictive. I eat quite bland food. Rarely eat any meat. I do eat a fair amount of tuna and pasta, and try to eat as mush fresh fruit as is healthy. The only real fats I eat are butter and a small amount of vegetable oil when frying the occasional egg. Chips are few and far between, and I only drink skimmed milk. My caffeine intake is tea and fizzy drinks. Fizzy drinks are getting less, and I've always drunk a fair amount of water. It could be better but it could be a whole lot worse.

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So does that mean you are feeling good? Or do you still have restless leg? If you do still have it, then you need some tweaking (not twerking - lol).

Eating well doesn't mean eating bland...

no tuna, no butter, no oil (how much arsenic do you have to take before you get sick??)

No skimmed milk.

Do you need to lose weight too?

How about oatmeal with brown sugar for breakfast and some fruit, how about a wonderful quinoa/kale salad for lunch with blueberries and a fat free dressing? How about spaghetti squash with marinara and garlic bread for dinner? And some strawberry sorbet for dessert?

It's easy as long as you think ahead.

Let me know your thoughts.

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What works for one person doesn't necessarily work for another - that's the main lesson of this forum. But plenty of people get some sort of relief in some way - diet, drugs, stretching, whatever - so it's well worth reading through the old posts for ideas. Best of luck.

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Hi there. Glad you found us. I too were struggling with rls and when i found this site it really helps, especially those long lonely nights. I am currently trialing dif'rent meds to try and get the right balance. Whatever you need to know you would probly get what you need on here.

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Hi BCBubbles

I am wondering whether the duloxetine may perhaps be aggravating your RLS. On the RLS-UK site rls-uk.org/home/4560971784 it mentions that certain medicines can actually make RLS worse.

There are a number of medicines that are thought to make the symptoms of RLS worse, in particular over the counter allergy medicines and sleeping tablets. These include:

• Antidepressants (e.g. amitriptyline and paroxetine)

• Anti-sickness medicines (e.g. metoclopramide)

• Beta-cblockers (e.g. propranolol)

• Anti-psychotic medicines (e.g. haloperidol)

• Some antihistamines (e.g. diphenhydramine)

Speak to your doctor if you have concerns about any medication you are taking but continue to take your medication in the meantime.

Kaarina

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Hi Kareena, I was interested in propranolol being on the "naughty " list as it is on the treatment option list on DR B rlshelp site.I found it slightly helpful when I tried it.Any ideas? X

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Hi Kim,

That is interesting what you say about propranolol. Mind you I found that when I was on amitriptyline for just over one year it did not make any difference to my RLS although I know from what others say on here that I am definitely in the minority.

I copied this information from the FAQs on the RLS-UK site. I notice there is a typo error too as there should not be a c before blockers but that is a very minor point. ;)

It emphasises the fact that there appears to be no hard and fast tips that one can give to someone diagnosed with RLS that will definitely work.

Kaarina

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The blood pressure meds on DR . B's website shouldnt be taken notice of. He has said himself that it should be removed. I am not aware it can make RLS worse. but from what i know, blood pressure meds were used at one time, but was found not to really help that much with relief from RLS.

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Thamks Elisse that explains it x

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The propranolol is old info on that web site and it needs to come down. that was when one of the theories was vein issues causing RLS, which it does not, so BP meds are not on any list for RLS now. I have to remind him to get that down since he told he would. ;) I take Propranolol for BP, but it does not help RLS, one way or the other.

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Thanks nightdancer thats cleared that up x

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I haven't been on the duloxetine long enough to think its at fault here. Considering how long this has been going on and also not knowing much about help for it I think I have some trials of meds to see what works for me. Thank you for all the info though.

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I was in the exact situation. Had since my teens, in my 50"s thought I was the only one, didn't know it had a name. Tried several medications to no avail including those prescribed for it and now taking Lyrica. This has worked wonders for me. All symptoms are gone. I am taking 100mg. 2 X a day. An added benefit which I don't think is known, stopped my hot flashes!

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This is very useful and interesting, tuni324.

In my experience RLS is associated with neurological or electrolyte disturbance - resulting in an imbalance of strengths in certain neurotransmitters. I used to get RLS if I ate pork, for example, particularly in the evening. Pork is renowned for its tryptophan and this increased my serotonin levels. Funnily enough carbs can also do this.

The twitching can occur in the arms as well as in the legs if the effect is strong. I have experienced RLS in both arms and legs whilst on an SSRI antidepressant. The restlessness is incredibly uncomfortable, as you well know. Stretching my limbs before going to bed helped, as did a brisk walk (for the legs). To me it felt like pent up energy that i just had to expend, which is why this helped. A proper balance of calcium and magnesium might help also, as an imbalance in either of these can cause muscle twitching, compounding the problem.

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We, in the States, have had just as much of a hard time as you, when getting relief from RLS, when it is genetic and not caused by some other disease. Doctors here can treat the underlying disease when it is nutritional or infectional, but they give up quickly when faced with a genetic conditions.

There are several groups in North America who are in some way descendant from the base source some scientists call ''Lucy'', meaning the person who was the first mutant and her genes are spread far and wide.

Icelanders, French Canadanians, Applachians, (U.S. Applachian Plateau) Cagens (Lousianians) and European Jews (Lucy) are some of her descendants. A genetic analysis proves we suffers are all related to Lucy. (23 and me genetic analysis done by a pvt co here in the USA) Look at your mothers ancestors because almost all genetic conditions are X chromasome transmitted.

Now to the Meds.---All the Dopamine antagonists used for parkinsons are usually effective (used as off label drugs), but over time the doses become so much that they become the problem and not the solution. However we always want a solution for now and if our ''now'' can stretch to a life span, then it is enough.

I just started my third Med. First ten years after 20 yrs of misery was Mirapex, then ten years of Requip and now I started on Methadone. They all worked well, not perfectly, but well. Other illnesses always follow RLS.

Depression, Fibromylgia, Kidney disease, Digestive problems and on and on. Each treated for what it is can help the RLS.

Did I overdo the post--yeah, I tend to tell you how the clock works when all you wanted was the time of day.

Windwalker

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You speak wise words windwalker

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dopamine "agonists" not "antagonists". Means exactly the opposite. The dopamine agonists are the Parkinson's/RLS meds, just to keep it straight. For example Naloxone is an "opiate antagonist" which means it wipes out the opiate reception in your body. ;)

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I am still getting relief from magnesium supplement, been on it now for about seven months. Took a couple of months to get properly in my system and get going but now I feel so lucky, no pain for at least the last four months.

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Excellent Wollyhat123! I hope the relief continues.

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Thanks Wollyhat, you encourage Me to keep taking the magnesium supplements!

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hi blackcurrant bubbles i too have been a sufferier of RLS for years i suffer from copd and while i was in hos for that i said to my consultant i dont feel so bad today after my treatment but i said if only you could give me something for my RLS i would feel alot better she said yes i can give you something for that no problem so she gave me a prescription for pramipexole 88 mg tablets she said take 2 night times so i did and have never looked back they are brilliant i have not had RLS since that day maybe if you tryed some of these they may work for you also let me no how or what you try ok hope this helps and remember your never alone on here x

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I'll put that one on the list for when these stop working. At the moment the combination of my antidepressants, tramadol, and gabapentine, I'm doing well. I don't think I'd had a bad night for at least three weeks, but during the day I could feel it simmering just under the threshold. But this past saturday I went to the Deep in Hull, not as impressive as they make it look but ok, and I did a lot of walking. My feet ached so much that I took my shoes of on the train and rested them up. The moment I decided it was sleepytime the rls kicked of big time. Not had a night like it in a long time. I was up all night, banging my legs, walking around. Yesterday was get as much rest as possible. Last night I was fine again though. I wish I could remove my legs at night an pop them back on in the morning.

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Glad you found something that helps sweetheart. I have suffered with RLS since about age 7 and then Fibromyalgia and OA and take Opana ER and thank God it helps all of the symptoms. Hope it continues to work for you!!! xxx Mitzi

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Duloxetine is an SSRI antidepressant, well known to make RLS worse. Doubling that med is only going to make it worse, certainly NOT better. SSRI's and tricyclic anti-d's are huge no no's for 99% of us. Doubling that med is the exact wrong thing to do to help with RLS. rlshelp.org Go to treatment page, see list of Drugs and Foods to Avoid. Duloxetine is right up there high ion the list to avoid. Personally, when I was on an SSRI, my RLS went NUTS, worst it ever was, also with a tricyclics. As long as you are taking those classes of meds, chances are your RLS will just keep on blasting away. Time for a change. Please see that treatment page on the web site I listed, which is hosted by one of the leading RLS experts in the world ( he is in the US, but will talk to anyone) We have to advocate for ourselves! ;)

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I had a particularly bad night last night. Nothing helped. It wasn't so much pain as annoyance in the twitching. My arm jerking was more pronounced last night too. I am trying to fit in the gabapentin as I've got to be careful using it too close to tramadol. Luckily with it being school holidays I can sleep in and catch up a bit.

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Hi again Bubbles,

You say "Hi. Just found this site after what feels is the thousandth time looking up RLS."

May I ask how you did find us on this site? Was it through FB or googling? I am pretty sure it was not a doctor who recommended RLS-UK rls-uk.org/ or this forum! I am always interested to know how fellow sufferers get to hear about us.

Kaarina

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Sorry, haven't been here for a little while. I found you literally through continuous googling, putting in random words that might connect somehow.

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Thank you for replying Bubbles. you must have put in the right random words in the end as you did find us. :) You received many replies. I do hope that you have had some nights recently where you have been able to sleep ok.

Kaarina

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I'm having a bit of a stinker here tonight. Thought I'd listen to a bit of music but couldn't sleep due to foot pain. I get it on top of my feet between leg and toes. Quite debilitating when it comes to walking. Anyway, smothered my feet and lower legs with ibuprofen 10% gel, took two tramadol, and am now watching Primeval, the tv series, yet again. I'll catch up with sleep once my son has gone to school.

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Hi I to have had this condition since God knows when and until finding this site almost by accident I'd not managed to find anyone with the same symptoms ( all over pain /strange uncomfortable feelings when u try to relax ) so couldn't put a name to it as doctors have been unhelpful.. iv just joined the site as Im pretty sure iv gone and cured myself at long last 🤔

I'm taking magnisium! It appears that this is what assists the body to process all sorts of chemicals in the body and as the condition is neurological it seemed to me ( following Internet research) quite logical ..

I'm assured bathing in the bath flakes us the best but at the moment I'm taking the tablets 2 in morning and 3 of a night oh and ime using a little magnisium spray from the health shop . Iv been at my wits end many times over the years and have been having the worse bout of it for the last couple of months with virtually no sleep.....

I'm no doctor but I'm convinced this could be a cure for many sufferers it seems that in today's world lots of people have I lack of magnisium in their diet I hope this is useful lto you

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Have you had your ferritin levels checked ? If not do .

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Hi, Patricia

I have suffered with RLS for about 2 yrs now, I take tramadol daily which works great, recently I’ve had trouble sleeping due to personal issues, which the DR temporarily prescribed me Temazepam to help , I also found these relaxed my legs great even without taking any tramadol.

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Isn't it weird, that we all thought along the same lines that we were totally alone with our suffering, not knowing that other people were being tortured as well. Like you, for 45 years, I truly believed that I was the only person on the face of the earth that had this hideous disease. And then to find out that it actually has a name .... beggars belief!

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