my apologies I am new to the forum I will try not to go into too much detail.
My RSL began in early 00s where I would experience bouts of rsl for no apparent reason.
in 2013 the RSL flared during pregnancy resulting in me taking early maternity leave as I was not sleeping. 10 years later my RSL has really gone into over drive. Experiencing RSL at all times of the day and especially at night. I am prescribed pramipexole but I am barely functioning on as little as 2 hours sleep.
I am in my late 40s and wondering if this condition just gets worse with age. I am dreading going back to work next Monday as I am barely functioning .
Does anyone have any suggestions or pointers as I want to go back to my drs. Whilst they are sympathetic I often feel k am seen a a hypochondriac
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Fidgetspinner61
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Welcome to the forum. You will find lots of help, support and understanding here.
You are suffering from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
This means you need to get off pramipexole. How much are you taking?
Since you are suffering now I suggest you add .half of a .088 [.125] tablet and wait until your symptoms settle. However don't be tempted to stay on it as you will augment quickly again.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
To come off pramipexole reduce by half of a .088 [.125] tablet)(ask for a prescription of these if needed) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. 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 1-2 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. If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. 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%.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 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. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further on the best iron tablets to take and how to take it.
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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
By the way it would really help us to give you advice if you would indicate on your gender on your profile.
oh my goodness thank you so much for replying so quickly
Funnily enough I have started experiencing discomfort in my arms hard to describe the pain other than i have to shake my arms.
I have been on pramipexole 0.088 mg. I take 2 hours before bedtime but often find I am increasing my own dose as I am tearing my hair out with pains from hip down to my calf. My arms and it is most severe in my left leg.
I am not on a slow release pranipexole and de has not checked my iron levels and ferritin levels.
I want to make an apt at my drs as I am a female in late 40s and am wondering whether my age perimenopause possibly menopause is making my symptoms worse. I have noticed that each time I try and start at exercise regime my RSL is worse. I have also noticed alcohol makes my symptoms worse.
I have tried a magnesium supplement alongside pramipexole.
I want my GP to take my seriously and just don’t know what to do to be taken seriously
So sorry you have to join our club.But you're in the right place.
We all join this club when the poisonous dopamine agonists turn on us. And they ALWAYS do.
Dopamine Agonists are now relegated to 'end of life scenarios' by the few world experts.UK doctors are a decade behind.
They still prescribe these awful meds and don't monitor patients for drug-induced worsening or Impulse Control Disorder.
You are suffering drug-induced worsening. Known as Augmentation. The RLS becomes incredibly severe. Starts earlier in the evening and moves to arms and other body parts.
RLS does NOT get worse with age. It gets worse because doctors put patients on these dangerous drugs.
You can be RLS free with the RIGHT doctors prescribing the RIGHT treatment.
So start by reading RLS-UK website. Useful Resources.
1. Get full ironpanel blood tests. Raise serum ferritin above 200ųg.
2. Get GP to review and replace all trigger meds ( under Medications to avoid on RLS-UK website).
3. Start withdrawal as set out in Useful Resources.
4. Get GP to prescribe a low dose opioid like codeine, tramadol or oxycodone and take for 4 or 5 nights at each reduction of Pramipexole.
5. Start gabapentin or pregabalin. Doses are set out in Treatment section of RLS-UK.
Things will get better.
Withdrawal is BRUTAL. Please arrange 3 weeks off work for when you drop the last dose. You'll think you won't make it. But you will. And once off Pramipexole, the symptoms will settle.
Many of us have got through withdrawal.
Many of us are completely RLS free and sleeping 8 hours a night.
But that's because of what we learned on this site. Not because of the doctors.
I am a little surprised you made the comment 'RLS does NOT get worse with age.' without qualification. My reaction to that was 'It bloody does.' And the histories of many people who write in to this forum do not bear your comment out.
I should have made clear that I don't agree with Doctors using that as a get out clause everytime someone goes back to say 'My RLS is much worse on Ropinirole/Pramipexole".Doctors simply say 'Well RLS gets worse with age".
I do accept that untreated RLS can get worse with age.
Thanks for the clarification. Thank you also for all the work you (and others such as SueJohnson and Mad Legs) put in towards helping people with RLS, it is very much appreciated.
How tragic! Since the leading cause of RLS remains brain iron deficiency; and seeing the connection with RLS and pregnancy (up to 30% of mothers see the growth demands of the fetus cause an iron deficiency in the mother), your RLS is more than likely iron related. However, you need to solve your current drug dilemma - excellent advice from Sue, et al. Article here...
many thanks I have a lot to look into … I think I will do my due diligence and research before booking an apt… I don’t want to be back at square one again
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