Morning hun. Iv had it for around 20 years iv always managed okBut Last Tuesday it started really bad and its day and night. Drs have given me some tablets for Parkinson they ste Not working.
I'm just in the lounge walking all night
1-3 ,hour sleep a night
Went to hospital Saturday they done bloods.
I never had it this bad, 24 he's a day
I take magnesium +b6
Folic acid
Magnesium spray
Compression stocks
Hot & cold therapy
Don't know what else to do
X
Welcome to the forum. You will find lots of help, support and understanding here.
You don't want to take the tablets for Parkinson's that your doctor gave you. I suspect that are pramipexole or carbidopa/levodopa. They are dopamine agonists and up to 70% of people on them will suffer from augmentation, which believe me you don't want.
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. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
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. 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 of gabapentin and pregabalin 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) daily." 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 as your doctor doesn't or s/he wouldn't have prescribed thos pills atHttps://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, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. 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, using a standing desk, listening to music, meditation and yoga. Some of this you are already doing.
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.
Your profile says you take Pramipexole. This drug, like Ropinirole and Neupro Patch, is a dopamine agonist.These drugs are no longer prescribed by experts because they worsen the RLS over time. ( Augmentation).That is what is happening to you.
The ONLY solution is to get off Pramipexole. Slowly.
You will need to educate your GP as they aren't taught anything about RLS or the dangers of Pramipexole. Show him/her RLS UK website and the link to the Mayo Clinic Algorithm. Your GP will need to help you through withdrawal which can be horrendous. Low dose opioids like codeine, tramadol and Oxycontin and medical cannabis can help you through the worst of the withdrawals.
Follow SueJohnson advice and read all you can about Augmentation.
Here's a useful link to a top expert explaining how to deal with Augmentation.
Iron pills/infusions are now first line treatment as well as switching from meds that trigger/cause RLS, like anti histamines and anti depressants.
sleepreviewmag.com/sleep-di...
Thank you for the advice, I started the medication on Friday
Easy. Stop immediately now. Go back to your GP and say he should have arranged full panel fasting blood tests BEFORE prescribing any meds.60% of RLS patients will see their symptoms improve by raising serum ferritin above 100, preferably 200. Pramipexole can cause permanent damage to dopamine receptors and many RLS patients don't then respond to iron OR to the next line of medication, pregabalin/gabapentin.
So don't take Pramipexole. Get bloods. Increase serum ferritin and switch any meds that trigger RLS.
Anti depressants, sedating anti histamines, some statins, some beta blockers and PPI gastric meds can all worsen RLS.
In the meantime, ask for codeine 30mg to take at night. Also try 2 or 3 magnesium citrate pills before bed. Codeine will settle the RLS while you see if raising serum ferritin levels helps.
Send us your blood results and forum members will advise you further.
I had bloods taken Saturday, Dr said it was clear ??? I'm on co codamol 30/500
Saying your blood tests were clear doesn't mean anything. Was your ferritin tested? If so ask what it was because what is OK for others is not OK for those of us with RLS.
I should have re read your post. If you have RLS, Pramipexole should stop it instantly. It's used as a diagnostic trial to establish whether it's RLS or something else.A few more questions. Did you start anti depressants, anti histamines or other meds recently that may have caused a worsening, other than Pramipexole?
Have you looked at the diagnostic criteria? Does movement stop all sensations? Have a look at RLS-UK website again.
You may need more tests.
But stop the Pramipexole as it isn't helping whatever you have and, if it is RLS, it will make it worse.
If I keep moving its fine, but as soon as I stop it starts and it is day and night
that's normal.
If you are taking a dopamine agonist- Pramipexol? At a proper dose. And it is not helping stop the RLS Then you may not have RLS at all.
Check out peripheral neuropathy.
Are you on Amitriptyline?That's an anti depressant and triggers/worsens RLS.
Yes I am, iv been on it a long time
That's why Pramipexole didn't work initially.Amitriptyline is an anti depressant. All anti depressants worsen RLS.
Please start reducing the Amitriptyline slowly now. It will stop the worsening RLS.
Your GP is, quite frankly, negligent. He/she should know that Amitriptyline worsens RLS and that Pramipexole should NOT be prescribed until bloods have been taken.
So,
1. start reducing Amitriptyline slowly now.
2. Stop taking Pramipexole immediately.
3. Go back to GP and get a print out of bloods. GP will tell you they are normal/clear. They won't be! Your serum ferritin has to be above 100, preferably 200. Serum iron above 60.
I guarantee your GP knows ZERO about RLS or you wouldn't be in the mess you're in.
Read every post headed Pramipexole/Ropinirole. They are similar medications, called dopamine agonists, they should never be prescribed. Top experts do NOT prescribe them.
Your RLS will be controlled once you stop Amitriptyline and you get your serum ferritin above 100, 200.
Can I ask my gp to.print off my blood results ?? Or will they refuse
They shouldn't be able to refuse. Where are you? Here in London, all our tests and records are available via the NHS App. nhs.uk/nhs-app/
If you download the App, set up account, and ALL your health records should be there.
I can see all my appointments and prescriptions over the last 27 years.
All my blood tests are shown and I can screenshot if needed.
And if raising serum ferritin doesn't help, we can guide you through next steps.
Safe antidepressants for RLS are Wellbutrin and Trazodone.
Well everyone one iv been off amatriptaline for around 2 weeks now, unfortunately i am still suffering with my legs Still painful through out the day and the restless legs at night is dragging me down, and still trying to work on little- none sleep
Not sure what else to do
Hi,
I have been suffering from RLS for over 10 years. Here are the steps that help me:
1- Never eat anything sugary in the afternoon (primary trigger)
2- No grapefruit (possible trigger)
3- Stop taking alcohol (another primary trigger)
4- Avoid antihistamines
5- Use NEUPRO patches (rotigotine transdermal system)
I hope this is helpful to you.
Regards
HELP FOR RESTLESS LEGS SYNDROME
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