curbside consultation'' website

[elsie1920]

mghpsychnews.org/rls-curbsi...

Has anyone heard of this?? What great news!

Joolsg and SueJohnson

[Joolsg]

Yes. I recommend it to posters often.However, I suspect many doctors would refuse to use it.

But as most doctors know zero, I would like to think they will put their patients' health & wellbeing before their professional pride/arrogance.

[elsie1920 in reply to Joolsg]

Hi Jools!

You're right. I imagine there are few docs who would reach out. When I first got rls, I also had severe sleep dep, and became suicidal. When I ended up in hospital, the P doc listened intently to my rls story. He admitted he knew very little about it. I gave him the website rlshelp.org The next morning when I saw him, he said he was up all night reading the site! He thanked me for his new knowledge. Dr. Jackson formerly of St. Helena psych hosp CA. 😀

While I'm here, I have a question. I have been taking codeine for rls. It's been great. I was only taking about 30mg for several months now, but that has been going up as of late. Last night over a 3 hour period I ended up taking 90 before it finally settled down. Is my rls getting worse or am I building up a tolerance? I'm scared, because I couldn't even go to work today. I've always heard that with rls, the same dose generally keeps working indefinitely, unlike for pain.

I'll also peruse rlshelp.org. for that answer.

[SueJohnson in reply to elsie1920]

That's great that the doctor spent the time to read it. That is very rare.

[elsie1920 in reply to SueJohnson]

Hi Sue! I know, right? I've mostly found that female doctors and, in particular, nurse practitioners are much more willing to listen and learn.

[Madlegs1 in reply to elsie1920]

Could be a trigger -- food ,drink or new medication?

[elsie1920 in reply to Madlegs1]

Hi Madlegs! Admittedly, I did have a very sugary alcoholic beverage just before bed last night, and last night was the worst in a long time.

Oh, I have been taking occasional Zopiclone, but I've found nothing about that being related to rls. Thank you. 😊

[Joolsg in reply to elsie1920]

Codeine is the weakest opioid and has a short half life. The short half life can sometimes cause mini rebound/opioid withdrawals and that manifests as increased RLS.Everyone reacts differently. Some stay on 30mg for decades. For others, it just doesn't work.

And most people need an upwards dose adjustment in their first year.

Has anything else changed? Have you had serum ferritin levels checked? It might be something as simple as low iron. Or starting a trigger med.

If serum ferritin is above 200ųg and nothing else has changed- you might have to switch to a long half life opioid (methadone or Buprenorphine).

Interestingly, the latest Massachusetts Opioid Register report shows that around 12% have switched to Buprenorphine in the last year.

I do hope you can find a solution.

[elsie1920 in reply to Joolsg]

So, ferritin is over 200 now?? I didn't know that! I thought it was still over 50. So I'm only 150. I thought that was doing great. Maybe that is my issue. I also drink a lot of green tea and I know that can bloc iron. Well, looks like I'll be supplementing with Iron again. I have hope! Thank you. 😃

[Joolsg in reply to elsie1920]

Mayo guidelines has a lower figure of 75ųg/L.UK guidance also has the lower figure.

But the top RLS experts regularly state that levels should be higher.

Some patients on here only experience relief when levels are above 300ųg.

[elsie1920 in reply to Joolsg]

Just got my labs back. 222! That is the highest it's ever been. I have no idea why! I'm glad, but was partly hoping it was low so I'd have a reason. But I will start supplementing anyway. Did I read that you guys had a page about ferritin/iron sup?

[Joolsg in reply to elsie1920]

Yes it's on RLS-UK website under 'Useful resources'.However- UK expert advice on timing of iron supplementation is different to US expert advice.

UK haematologists advise taking iron first thing in the morning when hepcidin is lowest and stomach acidity highest.

US Mayo Clinic Algorithm advises taking iron at night when brain iron is lowest.

[SueJohnson in reply to elsie1920]

Take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption.

Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

[TheDoDahMan in reply to elsie1920]

The two most successful low-dose opioids in treatment of RLS symptoms are methadone and buprenorphine, because they have a longer half-life than other opioids. Because they are used at a low dosage level, they seldom lead to tolerance. I would suggest trying to get your codeine prescription switched to methadone or buprenorphine.