Best Treatment if you’re already on Opioids

[Jellylegs21]

Hi, I’ve just arrived.

I have only recently begun suffering from RLS. I’m on a ton of very strong pain killers for Fibromyalgia, CRPS, a bowel disorder, Chronic Fatigue Syndrome, Acute Anxiety & Clinical Depression & more.

So my pain meds already include:

Diazepam, Oxycodon, Fentanyl Patches, Zapain, Oramorph, Ibuprofen or Naproxen

I ended up in A&E after a particularly bad flare up… when nothing was working & I didn’t know what to do with myself. The involuntary jerking around of my legs and up into my arms. Was completely exhausting me. After 2 hours of up, down and jerking around, in A&E I was told I’d have to wait at least another two hours to be seen. All I wanted was to be knocked out. I was so exhausted…. About 1am I said to my husband “let’s just go home. I look like a mad person, everyone in A&E is watching me.” In Triage they gave me a pain suppository - which did nothing. We got home I put a movie on, and really tried to concentrate on that, rather than reacting to the feeling in my legs. My husband said it took about 20 minutes and I finally fell asleep. Woke up next day, felt ok, then the twinges started. I’ve invested so far in compression socks, high dose Magnesium, iron citrate, and some tablets called “Calm Legs” .

I’m seeing my GP next week, it feels mainly under control…. But today I have had twinges again. I may have forgotten to take the “Calm Legs” last night. I can’t think of any other changes.

So, what am I doing right?

What am I doing wrong?

What can I ask my GP for?

[SueJohnson]

Are you taking venlafaxine which you listed on your profile page. It is known to exacerbate RLS symptoms in most people as is sertraline, A safe antidepressant for RLS is trazodone. Quetiapine is also known to make RLS worse.

[Nikos64 in reply to SueJohnson]

Sue, I’ve tried trazodone and it exacerbated my RLS. Its worth trying but I’d exercise caution.

[SueJohnson in reply to Nikos64]

Trazodone usually actually helps RLS, but everyone is different in how they respond to medicine.

[ziggypiggy in reply to Nikos64]

Yeah. You will know fairly soon if an antidepressant worsens your RLS. I don't think you need to be too cautious about it as you can stop the med and get back to your baseline RLS symptoms fairly quick. I, like you have tried tramadol, twice actually. Both times with side effects. Same goes for Wellbutrin and desipramine. Everyone is so different. I've tried several SSRIs and antipsychotics that were better tolerated than the supposedly safe antidepressants. Unfortunately they just didn't provide the relief I was looking for.

My suggestion to anyone who has major depression and RLS is if you do find a medication that works wonders for your mood but worsens your RLS to seriously consider treating the RLS rather than going through the awful process of trying alternative medications one after another. I wasted over a decade doing that before I said to my doctors I've had enough.

[Jellylegs21 in reply to ziggypiggy]

I totally agree.

[Jellylegs21 in reply to SueJohnson]

Hi Sue, I have been on the same antidepressants (Venaflaxin, Quetiapine & Sertraline) since 2010.

My RLS only started since about 2018… and it is intermittent. But when it comes it usually stays for an agonising few days.

What do you think Sue, could it still be the antidepressants causing or aggravating the RLS.

[SueJohnson in reply to Jellylegs21]

They might be or they might not. The only way to find out is to stop them for a few days and see what happens.

[Jellylegs21 in reply to SueJohnson]

Scary - it terrifies me, especially as I’ve been on them for so long. And I have a husband and two daughters to think of…. Going cold turkey could help the RLS but my family have been through so much over these years. What they don’t need is me having some form of Psychotic Break, when lands me in a Psychiatric unit.

I think with all of these things you’ve helpfully been suggesting. I need to book in a medication review with my GP, where we can talk these possible changes through. He’s a great GP has taken risks for me before, and I’m sure he will do it again.

[SueJohnson]

I assume you have been diagnosed with RLS by a doctor or you meet the following criteria: All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition. If it is RLS when you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100. Improving it to that helps 60% of RLS patients. If your ferritin is less than 75 then take 2 tablets of 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. 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 you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don'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 your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. Above all don't let your 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 ask your doctor to prescribe gabapentin. Beginning dose is usually 300 mg gabapentin. It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need 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 you take 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 everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at

Https://mayoclinicproceedings.org/a...

[Jellylegs21 in reply to SueJohnson]

Wow! Thanks Sue for all that useful information. My Amazing GP has been on annual leave for a couple weeks. So I have an appointment with him next week & blood tests booked. So this is when I will be talking to him about whether it is RLS or something else. The information you have supplied is so helpful. Thank you 🙂

[Stevie747 in reply to SueJohnson]

Thank you Sue that is excellent advice for so many of us . I’m going to print it off as I’m having my bloods done next week . I think this forum is extremely good, not only for all the advice but to know we are not alone ! I’ve had it for 30 years and for at least half that time felt like I was the only person who understood.

[SueJohnson]

Also it is possible that pizotifen is making your RLS worse. A safe substitute is maxalt.

[Joolsg]

Looking at your profile, your RLS started in 2009 when you had your burnout and were put on anxiety/anti depressants.As Sue has pointed out many of your meds trigger RLS so if you can substitute safe alternatives, you could then start to reduce the opioids you're taking.

Low dose opioids are very effective for RLS so something needs to change.

Medical cannabis might be better for the fibromyalgia.

I suggest you see one of the top US experts. Dr Buchfuhrer in California,Dr Ondo in Texas, Dr Earley in Baltimore etc.

They could go over all your meds & get you suitable alternatives.

[Jellylegs21 in reply to Joolsg]

I’m in the UK 🇬🇧 or I would be trying the medical cannabis alternative. But here in the UK, it’s only available for particular medical cases.

[Joolsg in reply to Jellylegs21]

You would definitely qualify. Apply to the Medical Cannabis Clinic. Fybromyalgia, sleep issues, migraine & IBS are covered. I get mine in the UK for MS and RLS. I guarantee you qualify. But it is expensive.

[Hidden]

I wonder if you have a rare condition called Ehlers Danlos? utswmed.org/medblog/ehlers-...

Not sure if your treatment would change much even if you tested positive for this auto-immune disease. Whatever you do don’t forget your one hour before bed (on an empty stomach) iron citrate. It relieves my RLS in one hour, but must be repeated every night.

SSRIs will make your RLS symptoms go crazy. But it doesn’t down-regulate your dopamine receptors the way the DAs do, so as soon as you stop the SSRI the increased symptoms will stop as well.

[Jellylegs21 in reply to Hidden]

Hi, thanks for your reply. I was just interested in how much iron citrate you take an hour before bed? Hope that’s ok to ask.

[Jellylegs21 in reply to Hidden]

Thank you I will ask my GP about EDS,

I’m not sure I have all the symptoms. But then again Clinical Depression, Acute Anxiety or Generalied Anxiety Disorder, Fibromyalgia, Chronic Fatigue Syndrome (M.E.) Hypermobility Syndrome, Cluster Headaches, Chronic Regional Pain Syndrome, Migraines, A damaged bowel - following major Surgical Procedure in March 2014, and damage to my ovaries from that surgery too. And Restless Leg Syndrome as well.

But I will certainly ask my GP about EDS, thanks for the thought.

[Hidden in reply to Jellylegs21]

Yes, I think it’s a must that you get tested for EDS. That would also explain why your surgery went sideways. Stitches don’t hold and wounds don’t heal well because collagen everywhere in your body is “defective” for lack of a better word. It sounds like your RLS started after your surgery which is not unusual when you are pre-disposed to it. And even though you’ve been on SSRIs for years I’m gonna venture a guess that the opiates you are taking masked any symptoms you may have had from them. The surgery was a bridge too far. The good news is the SSRIs do not make the cause of RLS worse. The cause is pathetic D2/D3 dopamine receptors. The dopamine agonist you are taking will down-regulate those receptors so you want to try to taper off those as soon as possible.

I take 25 to 50mg of ferrous bisglycinate an hour before bed. As an experiment I would try taking it before your nightly dose of the DA and see if maybe the RLS doesn’t even kick in or not as bad. Then adjust your DA accordingly.

You might want to think about reaching out to Sher78: healthunlocked.com/rlsuk/po...