Started experiencing “pain” in my legs in 2023 which I managed with light pain relief and a heated blanket. Things moved to my arms at the beginning of 2024. After a misdiagnosis of fibromyalgia i eventually managed to discuss RLS with my GP. They agreed the symptoms matched and put me on Pramipexole. Things were good for a little while but the symptoms returned and started getting earlier in the evening. Periodic limb movement also started happening while awake (I have always had this while asleep even when younger). The GP responded by upping the Pramipexole but after several increases i stopped seeing results and just found more problems.
I managed to come off that (with some help from tramadol) and am using over the counter cocodamol, ibuprofen and other things to try and manage at the moment. Things are not good.
I have started taking iron tablets to boost ferritin but it’s early days.
I had a review with my GP last week. She has finally referred me to Neurology and we discussed gabapentin and pre-gablin but she left me feeling quite scared of them as she said they may cause cognitive issues when I’m older.
I’m feeling very alone as no one really understands what I’m going through and the endless battle every night just to sleep even though I’m so exhausted. Has anyone else been on a similar jounrey ? Has anyone tried these medications and what was your experience ?
G
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GandalfTheOrange
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Gandalf, are you on an SSRI or a PPI? These can trigger or worsen symptoms in people that are predisposed to RLS, among many other drugs, even over the counter ones like melatonin and Benedryl.
I take Venlafaxine (Vensir) daily. I was on 225mg but have reduced to 150mg as I was aware I wouldn’t be helping. I do think about reducing it further but it’s a balancing act.
Yes, it is a balancing act. I no longer tell people they must come off the anti-ds. Supposedly Wellbutrin is more RLS friendly. Trazodone is better than an SSRI, but it can certainly trigger or worsen symptoms of RLS, just not as bad as the SSRI. If it were me, I wouldn’t bother with the GABA, but that’s me. I would have a low dose (50 to 100mg) opiate, like Tramadol or Codeine, in my medicine cabinet for really bad nights. Preferably Codeine. And it sounds like you already do have these drugs in your cupboard 😌
And if your SSRI is for anxiety then maybe there are still other more RLS friendly anti-anxiety drugs out there you can use instead? They may allow you to lower the SSRI even further and cover any break through anxiety?
So yes, go as low as you can on the SSRI and TAKE THAT IRON at NIGHT, on an empty stomach, about 1.5 hours before bed. I prefer for you to use ferrous bisglycinate - about 56mg. I use a type called Gentle Iron by Solgar. Each capsule is 28mg. Anyways, for many of us on here, the iron gets rid of the RLS symptoms, essentially completely, in about one hour, for one night. So you must repeat every night. ONLY take it at night Do not take a second dose in the morning. That only means less will be absorbed at night.
Because you’re on an SSRI you may not get “complete” relief from the iron, but I think you will still get a good amount. I’m so sorry that at such a young age you have to pick your poison like this. My son is 26 so I know how incredibly hard these young years are here on earth. All of us are broken. All of us. I wish I had more words of wisdom for you.
And here is someone who has multiple auto-immune conditions, takes several RLS provoking drugs, and got complete relief from iron: healthunlocked.com/rlsuk/po...
The iron at night trick is nothing short of a miracle. I didn’t come up with it. I read about it on a site like this one 15 years ago when melatonin turned my RLS into the devil incarnate and I failed to make the connection. Here is GillRLS. I miss her. This is what happens - people come on here, learn the iron at night trick and leave home. Hopefully you will too
There is an extremely rare chance gabapentin or pregabalin will cause dementia - nothing to worry about.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
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.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), pramipexole as you found out or Neupro (rotigotine) . They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead do ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. 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. (You don't need to split the doses with pregabalin) Most of the side effects 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 (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
I should clarify - gabapentin or pregabalin can cause cognitive problems although it doesn't happen to many, and if you come off them they go away and it is easy to come off them - not like pramipexole.
RLS-UK has been campaigning for years to stop dopamine agonists like Pramipexole being prescribed first line for RLS.Your GP clearly knows NOTHING about RLS and hasn't bothered to research/read the NICE cks guidance.
So ask her to actually read the guidance- in detail. There's a whole section on reviewing a patient's medication to see if they are taking trigger meds.
You are.
Venalafaxine is the trigger.
Of course, she has to balance treating RLS/depression.
But if you're taking venlafaxine for anxiety- there are better, safer meds.
For depression- trazodone or wellbutrin are considered RLS safe.
After reviewing you for trigger meds, the GP should have ordered full panel iron blood tests and raised your serum ferritin above 200ųg/L ideally.
Start by reading RLS-UK website. In detail.
And ask your GP to read it.
For occasional symptoms, you could take codeine.
If the RLS persists and raising serum ferritin doesn't help- you may need to take daily medication.
Gabapentin and pregabalin are first line treatment amongst experts. And yes, many doctors and neurologists dislike these drugs. And there are numerous studies linking them to dementia. But gabapentinoids are one of only 3 categories of drugs that are available to treat RLS. All have serious side effects. So it's best to treat RLS by removing trigger meds and raising brain iron.
In your case- discuss fully with a mental health doctor how you can resolve your depression/anxiety. If you can find a safe replacement to venlafaxine- it might resolve the RLS.
Try taking the ferrous bisglycinate every night as suggested by Clamire.
But if it doesn't help within 3 nights- switch to taking it every other day- as that raises brain iron levels faster than a daily dose.
Last resort meds are opioids. The long half life opioids ( Buprenorphine or methadone) work better for RLS.
Codeine is effective for occasional RLS.
Knowledge is power.
Most UK doctors are not taught anything about RLS so treatment is poor. The more you learn, the better the treatment you will receive. Start with RLS-UK website. It follows the latest research and treatment from the USA, where the top experts are 10 years ahead of UK medics.
If you want a good medical book- buy Dr Andrew Spector's ' Navigating life with RLS'.
That's the same study I was mentioning. And yes it shows the risk is highest among younger patients as they studied 4 groups <50, 50–59, 60–69 and ≧ 70 years.
The risk I mentioned was for people of all ages.
Also the average daily dose was 300 mg pregabalin and 1800 mg gabapentin.
And they "did not estimate the effect of the concomitant medications; confounders such as benzodiazepines, antihistamines, anticholinergics/antimuscarinics, tricyclic antidepressants (TCAs), muscle relaxants, opioids, proton pump inhibitors, antiepileptic drugs, antiparkinson drugs, and antipsychotics.
The medications that you've been taking try to dampen down the symptoms not adress the cause of fibromyalgia which is neuroinflammation. Neuroinflammation is often caused by foods in our diet especially refined seed oils and refined carbs (google 'foods that cause inflmmation') . fibromyalgiaresources.com/i...
Gandalf, even if the iron only gives you 25% you must take it every night. Taking iron or getting an infusion to raise ferritin (unless you’re anemic) is highly unlikely to help your RLS in any way shape or form. And despite what Sue says, everyone must try the iron at night trick no matter how high their ferritin is provided there is no iron overload disorder.
This member stated it perfectly:
violetta254 profile
“I don't know where the studies are that say that iron supplementation is effective only if the iron levels are low. Iron bisgylcinate has been a life saver for me and many others on this site even though my iron levels are NOT low. I can often get through the night with no RLS since I started it. And the information about addiction to opioids when using it for RLS has been debunked.”
Violetta had an infusion and it did not help. The iron at night trick is a lifesaver for her even though her ferritin is over 200. There is a lot of good information on here as well as misinformation.
Thank you. My ferritin was 96 when last tested. I have seen multiple sources state that a ferritin level of 200-300 can be beneficial for RLS. I am taking the easy iron as you recommended. 40mg last night and 60mg tonight. I will continue taking that for a couple of weeks and monitor my response. If it works for me I will ask for a blood test to make sure my ferritin level is in an acceptable range. I am also taking vitamin C.
I am still using co-codamol for the time being and iron working just yet, though I think I do feel a difference.
I can’t reduce my venlafaxine right now but is high in the to do list. Likely in the spring/ summer when the longer days naturally make combatting anxiety and associated symptoms easier.
Thanks to everyone for your advice. I appreciate there is no one size fits all but I’d rather try supplements before resorting to prescription mediation such as gabepenton and pre gablin.
If nothing else it’s helped to know I’m not alone I’m my experiences and symptoms.
If you can find the time, let us know how 60mg of the iron works for you. With that said, I’m going to try to go back down to around 28mg of iron at night. I just got the results of my iron panel and my ferritin is 168. I’m angry. I don’t want ferritin this high. I can all but guarantee you that pre-historic man did not have this high of a level. This higher ferritin level did not improve my RLS as it never does for anyone. It essentially doubled in two years. So what does that mean? Will it continue to double every two years? It’s just wrong and unnatural. I prefer not to have to supplement for the rest of my life. I believe the way to go is to find substances that will up-regulate our lousy dopamine receptors. Not sure that is possible, but I’ll give it a shot.
Well, enough about me. I know one day your RLS will be much quieter, and when it is, I recommend lowering the oral iron or stopping completely. 96 ferritin is great. Hopefully yours won’t double as mine has.
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