Time to come off Ropinerole 4 years after being on Pramepexole 7 years. What else can I try????

[Maddie1000]

I've been on these and both caused augmentation and with both was increased to maximum dose yet still had restless legs causing sleepless nights, anxiety and depression.Before I went onto medication I found out I was severely anaemic, I don't know how it happened to me as I was previously fit and healthy and was 2 monthly blood donator!

After falling asleep A LOT a blood test found my levels were at 4... Dangerously low. Put on iron supplements that very day but it wasn't monitored at all and it was on repeat prescription so kept taking it but over a year or so and another blood test found my results to be at over 700. Twice exceeding the safe limit. I'm wondering if I had had irreparable nerve damage due to extreme & dangerous iron levels?.

As well as daily RLS. Daytime and night-time RLS, I also have slight tremors in my hands, tight muscle pain in my calves, and cramps in my feet. Could this be nerve damage?

8 years ago I was in a car crash, someone back ended me and I was in terrible pain, had 4 months of physio ,x rays and MRI showing complete disc collapse in my L5/S1 and milder disc damage to L2, 3 and 4. Even 8 years on since that accident my spine cracks and have nerve pain shooting up back. Could this contribute to the RLS??

I was also on antidepressants and similar SSRI'S/SSNI'S/ since I was 18 years old up until 3 years ago I took myself off them as they were making my RLS worse as we all know.

I'm 48 years old now and 4 years ago started going through the change so started HRT. I've had to come off HRT for a break from instruction from the docs after problems.

At this present time I'm taking 2mg Ropinerole and 100/300mg Gabapentin at night, and I'm taking natural cbd reishi mushroom tablets and lions mane, to help with depression, anxiety and brain fog. I don't take anything else and have never smoked . I'm quite fit and healthy, walk a lot, and average healthy weight but continue to suffer dreadfully WITH RLS.

I hate to put chemicals in my body after years of using antidepressants and I always thought I'd never get off RLS medication but I'm frightened to try coming off them in case I get no sleep at all?? .

What else is going to help me better than those meds?

Would increasing gabapentin and coming off Ropinerole altogether work for me? Or if I do have nerve damage will nothing ever help me?

I had another full blood count in Jan 2023 which showed everything WITHIN RANGE except MEAN CELL HAEMOGLOBIN level (XE2pb) ABOVE RANGE slightly at 32.4PG.

My bone profile:

SERUM CALCIUM LEVEL (XE2q3) was BELOW RANGE at 2.07 mmol/L AND

SERUM ADJUSTED CALCIUM CONCENTRATION (Xabpk) BELOW RANGE at 2.13 mmol/L.

Magnesium, sodium, potassium, chloride all within range. White blood cell count within range.

What other tests can a doctor do? Is it worth having bloods done again 6 months after last results? Or something else I'm missing?

Any help is appreciated.

[SueJohnson]

To come off ropinirole, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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. But in the long run, you will be glad you came off it. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin which you are already on .It won't be fully effective until you are off ropinirole for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. You could start increasing it the same way now until you are at 900 mg but I would go further until you are off ropinirole and your symptoms have settled. 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. If you take magnesium take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason. 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." 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 yours obviously isn't or s/he would never have prescribed a dopamine agonist atHttps://mayoclinicproceedings.org/a...

[SueJohnson]

I wouldn't worry about the high ferritin level. Mine was 608 and my doctor just told me to stop taking iron tablets. HRT contains estrogen which makes RLS worse for many

[SueJohnson]

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, estrogen, 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, using a standing desk, listening to music, meditation and yoga.

On your ferritin I would have it checked 3 months after your last check since with it so low to begin with it is likely to fall quickly and you don't want to become anemic again. When you need to take iron tablets again, then again have it checked every 3 months.

[Munroist]

Firstly your back issues following the car crash 8 years ago could definitely be related to the muscle pain in your calves, and cramps in your feet. If your discs collapsed or were damaged then there will be less room for the nerves which exit from the spine from S1, L5, L4, L3 etc which is a common cause for sciatica and leg pain. It's less likely to be the cause of hand tremors as those nerves leave the spine much higher up but from personal experience you can get something called nerve excitation (which is what the NHS pain clinic called it) which can lead to odd sensations throughout your body when aggravated. I have lost disc height in the same area which caused nerve issues and if I really aggravate the nerves I get numbness in my little fingers, tingling on my face and neck. Disc issues are difficult as no-one can really see what's going on and normally treatment is through physio and good posture management using techniques like Pilates, core strengthening and paced exercise, staying within your limits but ensuring you get plenty of movement. Discs can heal over time to a degree if you look after them. Surgery can lead to worse problems but is sometimes necessary if the nerves are very badly impacted by the spine.

There is a relationship between RLS and neuropathy (nerve damage), some people finding that neuropathy can worsen RLS. In my case I am pretty sure I had RLS before my own back issues but I suspect it got a little worse afterwards if you have been taking dopamine agonists for 11 years then your crash 8 years ago doesn't seem to be the cause of the RLS? I share your views on taking medications and prefer not to, but for interest pregabalin and gabapentin are prescribed for both neuropathic pain and RLS. Your dose of gabapentin is well below that recommended for RLS in the Mayo Algorithm so increasing it may give you more help although I understand that during withdrawal from Dopamine Agonists the gabapentin may struggle to cover the symptoms. I took pregabalin for nerve sensations and pain but don't recall it helping with the RLS much if at all.

Lastly you say your blood test results are mostly within range. That can mean 25 - 250 µg/L for ferritin which is a wide range and RLS sufferers generally need it towards the upper end, definitely over 100 and closer to 200. However raising iron levels doesn't work in every case so while it's well worth trying it won't work for everybody.