need help!!

[mariedonnelly]

sorry to sound so depressing but I'm just so fed up with this another bad night I've not slept for weeks and it follows me all day long!!! :/ I just don't know how much longer I can go on like this ..... I'm done..... I can't bare it don't worry I'm not going to do anything stupid I never would I'd never put my kids through that but omg how easy that would be.... I just can't put up with this is a bloody joke drs don't seem to realise how much we suffer it's just ok we'll look into things and get back to you but when in 6 months when things are even worse how much worse do you want me to get I'm already so depressed because of this stupid flipping condition that's stealing away what little life I have left day by day it's taking my life away yet your happy for me to wait more months..... you can't give me answers ...you can't treat me...I'm just left...to suffer daily...for my life to fade before me....I need help now!!!

[Madlegs1]

Marie- so sorry for all your troubles.

Many Doctors haven't a clue about rls- they were never taught about it in college.

Can we be getting some information from you--

What medications have you been and are you on?

Have you had any blood tests-- what is your serum ferritin number?

Are you on any triggering meds - such as HRT, antihistamines, antidepressants, Statins etc?

If you can get back to us, someone will surely be able to give you some hope.

All the best.

[mariedonnelly in reply to Madlegs1]

thankyou so much for your kind reply.

I was diagnosed with rls about 6 years ago but had been suffering with it for a few years beforehand. I got through the first 2+3 years by keeping my feritin levels above 100 via feritin Infusions ( as I'm tube fed) I can't remember what my last feritin levels were ( can't check as I'm in the middle of changing drs so don't have online access ATM)

Theve had me on pramipexole 3 tablets at night but the side effects were so bad I've had to come of them they made me so zombiefied Id got up in the night ( I'm tube fed and needed to I miss judged my step and plummeted straight back landing on my buttocks back hips which subluxed ( luckily I pop they bk in myself) and back of my head only coming away with byiused body and slight concussion! that scared the heck outta necsibive told gp who agrees there not a good option for me as It could of been much worse! so she's given me two options 1. she can write to nurology to see what they think or 2 refer me bk to them but there's an 18 month waiting list so I said for her to write to them she should hear back inthin a week.

I have symptoms day and night I can't really pinpoint any triggers but best way , I've heard ** s*x can make it better as it releases endorphins but that didn't work either lol

I've tried pressure stockings, massage hitting my legs , bio freeze gel and tens machines but nothing has worked 😭 😞 😭

thanks

[Joolsg in reply to mariedonnelly]

Marie, Can you afford private treatment? If so, Professor Walker at UCL, Queen Sq would be able to help. He is aware of the high rates of Augmentation on Pramipexole and Ropinirole and would prescribe either gabapentinoids or a low dose opioid.

Several of us are taking Buprenorphine, very successfully.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Since I don't know what you are taking or have tried for your RLS, I will assume you haven't taken anything.

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 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. 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.

Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead 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, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (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 like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

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.

[mariedonnelly in reply to SueJohnson]

Tu so much Hun I'll pass on to gp

[RiversW]

Dear Marie, You have come to the right place. My advice to you is to take some time and read as many post on this site as you can.You will find stories by people who have been exactly where you are right now. I was one of them. Woke up every day, if I had slept, not wanting to face another day and certainly another night of suffering. But you can improve the quality of you life by listening to the suggestions of people on this site. Finding this community was a godsend for me. I learned more here about RLS in a week than I had from doctors in the previous 30 years. Good luck Marie, don't give up. You can turn your life around. Rivers

[mariedonnelly in reply to RiversW]

ty so much xx

[Joolsg]

Welcome Marie,If you can fill your bio it will help us guide you.

I'm betting you are on a dopamine agonist. Ropinirole or Pramipexole.

The RLSUK website explains about augmentation and sadly, the ONLY solution is to slowly reduce the meds and never touch a DA again.

You also need to get full iron panel blood tests, morning, fasting, and post results.

Iron pills/infusions are now first line treatment amongst experts.

[SurvivorD]

It makes me so sad to.hear when a fellow RL sufferer has got to such a low point in their lives. I get so angry with the medical profession for their lack of interest!!! I would say, it must be the most debilitating syndrome and yes it takes over our lives and still very little research has been done. Marie we feel for you and can honestly say we know EXACTLY what you going through!! Stay strong and know you not alone in this battle!!!