RLS Symptoms

[Ilovequilting]

Hello, I have had RLS for several years and have an appointment with a specialist in October to help with weaning off Pramipexole and overall management of the symptoms. At this time I feel that some of my symptoms are “programmed” and I’m helpless to stop them. For example anticipating an event where I will have limited access to move-car rides, dinners out, or the dreaded bedtime. Has anyone else felt that part of their symptoms, definitely not all, may have a psychosomatic component and if so, did you find anything to help? Unfortunately, this suggestibility has always been part of my makeup.

[Madlegs1]

How long have you been on the Pramipexol? At what dose?

What other medications are you on,?

Have you had your ferritin checked? What was the actual number--- not "normal" 🤪

Come back with that information and we can better help you!

RLS is triggered by anticipatory stress for many of us. It really can be all in the mind!!

[Ilovequilting in reply to Madlegs1]

My Ferritin ng/ml is 56.

[Madlegs1 in reply to Ilovequilting]

That's low-- it needs raising to at least 100-- and 200 would be better. However,there is no guarantee that things will improve if ferritin is raised. But it does eliminate it as a possible cause of RLS.

[SueJohnson in reply to Ilovequilting]

Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms and it will help you come off the pramipexole.

If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg 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 your transferrin saturation (TSAT) is below 20, you may need an iron infusion.

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 tumeric as it can interfere 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 3 months if you are taking iron tablets or after 8 weeks if you have an iron infusion. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible.

[Ilovequilting in reply to Madlegs1]

I started Ropinirole about 12 yrs ago, changed to Pramipexole .5mg about 5 years ago and am still taking this about 7:30 pm. I was on Celexa for several years which was great for anxiety, stopped about 3 years ago when my RLS became worse. I have tried 50 mg of Trazodone for sleep, it seemed to aggravate the symptoms. I tried Wellbutrin, did not help. I really need something for anxiety, I think at this point it would be very beneficial.

[Madlegs1 in reply to Ilovequilting]

You are probably experiencing something called Augmentation, having been on Rop and Pramipexol for 17 years.

Do a bit of research on that and read up most any of Sue Johnson's replies to many posts on this site.

Good luck.

[Joolsg in reply to Ilovequilting]

Try a low dose of pregabalin. It is sedating and can reduce anxiety for many.As you've been on Dopamine Agonists for 17 years, drug-induced worsening is inevitable.

Reduce slowly, by half a 0.125 pill every 2 weeks. Symptoms increase at each dose reduction, then settle.

Once completely off Pramipexole, your RLS reverts to what it was like 17 years ago.

Raising serum ferritin above 200ųg/L may help.

You'll probably need replacement meds like pregabalin or gabapentin or if they don't help, a low dose opioid.

Read all you can about Augmentation and withdrawal. Start with the Mayo algorithm.

[SueJohnson in reply to Ilovequilting]

Buspar is good for anxiety and safe for RLS

Wellbutrin won't help you sleep if that's what you meant when you said it didn't help. It is mainly for depression.

[teakabeagle in reply to Ilovequilting]

Try TMS( Transcranial Magnetic stimulation). It can be set up for anxiety and/or depression. Theta Burst stimulation is great for both and can be done along with TMS. Most insurances cover it.

[MrCrow in reply to Madlegs1]

I see that most people have their ferritin under 100. I don't see a lot of people with higher ferritin here. My ferritin on the other hand is at 116.

RLS is at least in part caused by inflammation and when there is systemic inflammation, the body tends to up the ferritin

pubmed.ncbi.nlm.nih.gov/245...

From the above paper, it looks like ferritin is an important biomarker for chronic inflammation.

I wonder if have inflammation and my symptoms are being exacerbated by it.

[Madlegs1 in reply to MrCrow]

That is one of the conundrums raised by the discussion on ferritin and RLS.

Low brain iron tends to be a marker for RLS, the reason few people on here without high ferritin seems to reinforce that point.

50 % of people get relief by raising iron.

If high ferritin is a result of inflammation, then that complicates the assessment.

There are so many theories about RLS causes and each person has their own pet viewpoint-- (mine is all about triggers-- but I hide it quite successfully, don't you think?)😅

Anyway-- if you have inflammation, then certainly RLS may result from it. Yes.

[SueJohnson in reply to MrCrow]

My ferritin is over 500.

[MrCrow in reply to SueJohnson]

Nappa: Vegeta, what does the scouter say about his ferritin count?

Vegeta: It's over 9000!

JK XD

[Joolsg]

Until you're off Pramipexole, your RLS will continue to be very severe and rule your life.Stress can definitely trigger an attack, so worrying in advance does bring it on.

There is hope.

There are better treatments. Many of us are now RLS free once off the dreaded dopamine agonists.

[Huntingleroy]

Yes I agree 100% , I would avoid situations like cinema , flying , long drives but not always possible . I can remember a cinema trip and a 4 hr flight when I thought I was going to lose my mind with crazy , crazy legs . I did find that knitting or playing scrabble would take my mind off the situation . Reading didnt work for me. Like you , I dreaded going to bed every single night. Luckily those days are gone now , been on Buprenorphine tabs since April , a life changer . Good luck !