Severe RLS

[micky82]

Hi, my name is Mick, at present my dad is living with severe RSL. It's making him depressed, he can't sleep at night then sleeps all day he's been off work because of it. He's been back and forth to the doctor's to no avail medicine wise, I've been out and got him some CBD oil to see if this helps. Just wondering if any 1 has used this to relieve the effects of RLS? Any advice would be greatly appreciated

[SueJohnson]

When he sees his doctor ask for a full iron panel. He should stop taking any iron supplements 48 hours before the test and fast after midnight. He should have his test in the morning as that is when his ferritin is lowest. When he get the results, he should ask for his ferritin and transferrin saturation numbers. He wants his ferritin to be over 100. Improving it to that helps 60% of RLS patients. If his ferritin is less than 75 then he should take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. He shoud take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night If he has problems with constipation switch to iron bisglycinate. If his ferritin is between 75 and 100 or if his transferrin saturation is below 20, he probably need an iron infusion since iron isn't absorbed as well above 75. If he takes magnesium he should take it at least 2 hours apart since it interferes with the absorption of iron. He shouldn't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise ones ferritin. He should ask for a new blood test after 8 weeks if he has an iron infusion or after 3 months if heis taking iron tablets. Above all he should not let his doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead have him prescribe gabapentin. Beginning dose is usually 300 mg gabapentin or 100 mg if he is over the age of 65. It will take 3 weeks to be fully effective. After that increase it by 100 mg every couple of days until he finds the dose that works for him. Take it 1-2 hours before bedtime. If he needs more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If he needs more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If he takes magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you and him everything you both want to know including about its treatment and he should refer his doctor to it as it is evident his doctor doesn't know much about RLS at Https://mayoclinicproceedings.org/a...

As for the depression many drugs can make RLS symptoms worse. Instead he should ask for Wellbutrin or trazadone.

[Madlegs1]

Sorry for his situation.

If this is something that has come on suddenly, then please look back and see if anything might have kicked it off?

Triggers include many foods and drinks and also medications such as statins, antihistamines and antidepressants.

CBD oil may help, but I would check out the factors I've described above, before going anywhere else.

Also- what exactly are his symptoms?

Let us know what's up! Thanks.

[micky82 in reply to Madlegs1]

My grandad had it, but my dad seems to have it worse as it's not just in his legs no more it goes up into his abdomen aswell he is diabetic aswell

[Madlegs1 in reply to micky82]

Medications??

[LanaCSR in reply to micky82]

I have heard that having diabetes makes one more prone to having RLS, unfortunately. 😥

[Nightwalker6 in reply to micky82]

If he’s diabetic that may affect his kidney function which will exacerbate symptoms or cause RLS. Please check with your father’s GP. I use CBD & THC oil medically prescribed. It does help.

[Joolsg]

Hi Micky,Has the GP prescribed anything for your dad or ordered blood tests? GPs know zero about RLS as it's not taught at med school.

There are NHS and NICE guidelines, both of which advise blood tests and set out the meds that are available BUT they're already out of date as they mention dopamine agonist drugs ( Ropinirole. Pramipexole and Rotigitone) and the latest Mayo algorithm ( best RLS treatment) no longer recommends these due to complications of augmentation of symptoms and Impulse Control Disorder.

There is help.

Let us know all meds your dad is currently taking.

[micky82 in reply to Joolsg]

Hi, he's has loads of blood tests, they currently have him on tablets to treat epilepsy but nothings working. But it's not just in his legs it's gone up into his abdomen

[Joolsg in reply to micky82]

Has he ever been on Ropinirole or Pramipexole ( mirapex)? I only ever had RLS in my abdomen, face and back when on Ropinirole ( adartrel).

[Joolsg in reply to micky82]

Is he type 1 or 2 diabetic? Is he on statins?There are many medications that worsen RLS so a full list with names would help us direct you better.

[TheDoDahMan]

The most severe cases of RLS are often remedied by doctors knowledgeable and courageous enough to prescribe low-dose opioids.

[Graham3196]

I will send some notes in a private message that might be of some use. Starting tomorrow ask your dad to drink no more milk and no caffeine. He can drink just water. If he drinks much caffeine then he might have some headaches. This is part of what helped me and its something he can do today. It might work for him or it might not but its worth trying for a week. It might be worthwhile going gluten free for a couple of weeks as well. It also helped me. I'll send it later tonight.

[micky82 in reply to Graham3196]

Thank you

[Seal1504]

Hi Mick sorry to hear your dad is sick unwell. I've just had a diagnosis of RLS after suffering with pains in my legs for 9 years!! I've had so many tests & recently visited a consultant privately as the pains were so bad! I don't really have the twitching but my lower legs start to hurt when I go to bed. The pain is like vices & I feel as if they are going to burst. I also have burning sensations. I take gabapentin & I haven't heard if anyone having pain like I have?? I have just returned from seeing my family in Switzerland & bought some CBD 10% so I have only taken 2 doses so far. I have just turned 65 so maybe the same age as your dad? I am really hoping this CBD oil will work so I will be keen to let you know if it has any effect!

[micky82 in reply to Seal1504]

Hi my dad's just turned 62 so ye similar age, I've got him the 4% strength to start with see how he gets on with it, also he has a CBD vape

[SueJohnson in reply to Seal1504]

See my reply to Micky82

[Nanpat in reply to Seal1504]

I have the same vice like pains and ready to burst feeling, plus constant need to walk lasting for hours before bed. Hope treatment helps you, would be interested to know outcome

[SueJohnson in reply to Nanpat]

Have you had your ferritin checked. Improving it to 100 or more helps 60% of RLS people. If not, See the part of my reply above on ferritin.

[Nanpat in reply to SueJohnson]

Seeing dr tomorrow for blood test form, thanks.Think mine is related to other factors though as been suffering 25 yrs, gradually getting worse, have back issues as well…..nerves in back

Slightly crushed

[Eryl]

Most probably due to chronic inflammation (inflammation caused by diet) of the nerves as described by Dr Georgia Ede and Dr Chris Palmer. As well as causing mental problems this inflammation causes the nerves in the legs as well as other parts of the body to be more sensitive and trigger spontaneously. The solution is to cut our refined carbohydrate and refined seed oils, this basically means cut out processed foods which includes fruit juice and anything made with white flour.

[CookiePooki]

If he's on any blood pressure medicine check to see if it can cause RLS amlodipine (norvas) is said to "can cause RLS". . I have stopped taking amlodopine and my restless legs symptoms have eased up a lot. Its been about a month since I stopped using BP meds now. I did check with my doctor first because my blood pressure had been sometimes 97/40 and I was extremely exhausted. So after I stopped the BP meds I suddenly realized my rls had quieted a lot. I am still taking tramadol 5 mg though because after I stopped the BP meds for the first five days I had not one single episode of rls but I was still taking tramadol. So one day I didn't take the tramadol and that night not only did my legs give me a fit but also my arms. So I am still taking my tramadol however my legs still aren't nearly as restless as when I was taking amlodipine. Allni can say is without going into a great deal of personal history is I believe because of the history of my blood pressure the amlodipine caused me to get res in the first place. Every one is so different what works for some may not bring any relief to another. I will say without tramadol my legs are horrible but without the BP meds I'm in a much better place. I hope your dad finds a magic cure as I feel like I'm 1000 percent better than previously.

[Bieler]

Tramadol is a Godsend. Had RLS my whole life. It’s the only thing that makes it go away.

[MumofSam in reply to Bieler]

My RLS is now a million times worse since taking Tramadol for sciatica. It works fine while you’re on it, although I was on almost the maximum dose, but when I weaned off it I discovered my RLS had spread to my left arm, the base of my spine and the back of my neck. I thought it was just the effects of weaning off, but 4 years later I’m now stuck like this. Pre-Tramadol I only had it in my legs, and even then only suffered for a few nights a month. Like you, I’ve suffered with it all my life. Now it’s every night unless I’m lucky.

So I wouldn’t go anywhere near Tramadol with a barge pole personally.

[LanaCSR]

For Micky82: I tried CBD oil and it was never very effective for me, but kratom works great if he wants to try something that works fast and doesn't require a prescription for. You can order it online and I've even seen it for sale at places that sell CBD. Good luck!!

[Pepper163]

Look for a neurologist or psychiatrist that works with RLS patients...have your father have. Measurement of his ferritin levels in his blood....your father may need a blood transfusion....is your father tried Reship medication...your Dad is lucky to have such a caring and attentive son...best of luck...

[SueJohnson in reply to Pepper163]

If you meant requip, he should not try that as it is a dopamine agonist.

[LanaCSR]

As you read these posts, I would advise you watch out for those who try to give medical advice on here. They could cause more harm than good.

[micky82 in reply to LanaCSR]

I have been looking at some of the medications that every 1 is suggesting, and looking at side effects and stuff and a lot of them have scary side effects to be fair

[LanaCSR in reply to micky82]

Exactly! It's frustrating when you try something to help and it ends up being intolerable due to its side effects. Gabapentin is THE WORST when it comes to side effects. I tried it and it had me bumping into walls when I'd stand up and start to walk. I couldn't tolerate it at all, not to mention it kept me drowsy and wanting to sleep all the time. I don't know if you have access to Horizant, but it is a different form of gabapentin that works great for RLS but doesn't have all of those bad side effects that true gabapentin has. I have been taking Horizant for about 5 years now and have no problems with it and it really helps my RLS.

[micky82 in reply to LanaCSR]

I'm in the UK, but will have a look online and see cheer's

[LanaCSR in reply to micky82]

I'm in the US. So I'm unfamiliar with whether it's available in other countries. I wish I could send you some of my kratom to try. It works so well for me and many others on this site!

[micky82 in reply to LanaCSR]

From what I've seen online, it's looking like RLS is more researched and treated better in the US than in the UK, can't really find out anything about it over here or best medicine to treat it, doctor's just keep chucking different pills at him but have told him the last 1s he on If they don't work there's nothing else they can do for him.

[LanaCSR in reply to micky82]

I was told the exact same thing by a different neurologist that I was seeing years before the one I now see. That other neurologist said I have a very difficult case, that he's tried every medicine out there that he can think of, and that he is recommending me to a pain management doctor who can prescribe me opioids because that was the last resort. So I know the frustration you feel. And, believe me, in the US they treat you like a drug addict when you are taking opioids. So I tried the opioids route for about a year until I just couldn't take it any longer. Although they helped my RLS, the side effects weren't something I wanted to deal with for the rest of my life. So I did a lot of research and was thankful to find this neurologist I am currently seeing. I wish you the same good luck to find a neurologist who truly cares for his patients and knows about the most up-to-date trends in treatment for RLS. And I know you say you think there's better doctors for RLS in the US than in the UK, but believe me when I say that I have been to a GP, two so-called neurologists, and a pain management doctor before I found my current neurologist, and all of those previous doctors knew very little, if anything, about RLS.

[Biscuitface in reply to LanaCSR]

LanaCSR is your Neurologist in the UK?

[LanaCSR in reply to Biscuitface]

No, I'm so sorry, but he's in the US. 😟

[SueJohnson in reply to micky82]

Don't be afraid of the side effects of gabapentin. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. All medicines have side effects. If you read about the side effects on almost all medicines you would never take any medicines. They have to list them all even the rare ones to cover themselves. If your father has a side effect he can't stand, he can always slowly come off it. Nothing ventured, nothing gained.

[ziggypiggy in reply to LanaCSR]

I think all suggestions and advice here is given with the caveat that you consult with your doctor. A few posts down even you suggest kratom as a remedy. We are all here trying to help. Most advice here is anecdotal except those linked to studies to back it up.

[LanaCSR in reply to ziggypiggy]

Ziggypiggy, you are welcome to your own opinion, but you are wrong because I never said kratom was a remedy. I only suggested it as it was something that worked for me, which is what this forum is intended for and what most of us do for each other in here. It is NOT to give medical advice and tell people they "should" take this and "need" to do this. Even SueJohnson said the word "should" no less than TEN times in an earlier post which is telling someone what to do, not sharing their own experiences that worked well for them. And I even said something in another post that is very similar to what you just said about how we should consult a doctor. I am not telling people they "should" take this medicine and "need" to get this test.

[SueJohnson in reply to LanaCSR]

I gave a source for what I said which is the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...

[LanaCSR in reply to SueJohnson]

🤣 lol

[Sleepylamb]

Don't know if your dad recently started Blood pressure medication, but it can trigger RLS.