I have had RLS for years though it was usually one night here and there but over the past few weeks has become almost non-stop and the near total lack of sleep is becoming unbearable.
I went to my Doctor and the first thing he wanted to do was give me a blood test but I have a crippling phobia of needles, to the point I have put up with tooth-ache and other things for years. When I explained this and asked for alternatives he shrugged and said nothing.
I have since learned that it cant be diagnosed by a blood text and there are medications available. How can I convince him to try something, anything? I cant put up with the lack of sleep and irritation any longer.
Thanks in advance to anyone who has recomendations or advice.
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AndyBK201
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A blood test for iron panel would be a reasonable first action for a doctor to take.
He could have prescribed something like Pramipexol for a few days ,just to confirm a RLS diagnosis. And then ,if confirmed, start you on Gabapentin or Pregabalin.
He also should have taken your medication history, to ensure you are not on any aggravating meds, such as statins, antidepressants, antihistamines, HRT and various others!
He would ensure that you keep an intake diary,to pinpoint possible triggers, such as MSG, high salt, artificial sweeteners and any idiosyncratic triggers your body might not tolerate.
There is a Mayo algorithm for RLS, which you could print and give to him if he is interested enough.Hopefully someone can supply the link, or you could try the search facility on this page.
Do you happen to know if Loratadine would be among those antihistamines which might aggravate? I use these occasionally (but mostly a spray containing beclomethasone dipropionate).
Unfortunately, iron treatment is first line amongst experts and the GP will need to know your actual figures before he can prescribe an iron infusion or iron tablets.Can you arrange to have a sedative to get the blood tests?
Raising serum ferritin above 100, preferably 200, resolves the majority of RLS.
Are you taking any other meds? Sedating anti histamines and anti depressants all trigger/worsen RLS.
So raising brain iron is the first step, followed by switching patient off trigger meds.
Try to arrange sedation or hypnotherapy to have blood tests. The majority of people can be med free by raising serum ferritin.
More information or clarification to add to what the others has replied to you.
As mentioned a blood test isn't needed. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition. If you meet these then the doctor should tell you, that you have RLS.
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. And yes as Joolsg suggested try to see if you can be sedated for it. 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) unless there is some special reason s/he feels you need it. 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. (Pregabalin is more expensive than gabapentin in the US.) 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 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)." 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, 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, 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, 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender and any other health conditions you have.
I have this for 40 years and have tried and agree with nearly all of your suggestions - I am still on ropinirole after about 20 years and gradually increasing - 4 mg at the moment - I have seen a neurologist and the 4 mg was his suggestion but I think I am beginning to augment and would appreciate further advice- I am in the Uk not too far from London if you have any suggestions.
You are definitely augmenting. 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. And 4 mg is the maximum amount.
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. Some have used kratom or cannabis temporarily to help. 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. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. 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 of gabapentin or 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. If you take magnesium even in a multivitamin, 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 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)"
Sue Johnston thank you so much for your advice I will see what I can do - even just the empathy helps rather than being treated as though you're imagining it.
Thanks thats a lot of really useful information. As for blood tests, as silly as it sounds its my greatest fear, I would literally do anything to avoid it as i have done for the past 20 years.
Are you taking iron? moringa is loaded with iron, full of health benefits, some claims it cures treats and prevents over 300 diseases, and is cheap, organic black strap molasses is also very high in iron..
Not that much iron in either moringa or black strap molasses - maybe 1-1.5mg (2 tsp. moringa powder). That said, my severe RLS was "cut into" by taking the home remedy black strap molasses! I quickly switched to ferrous bisglycinate chelate - never looked back - it's cheap and readily available, non-constipating also. BTW - many breakfast cereals are fortified with iron to the tune of 10mg or more!
I also have a phobia about needles. I have a terrible time at the dentist. I live in fear of having needles stuck in me. Even a vaccination is a horror show and blood tests worse than the shower scene in PSYCHO!.
BUT I have found that I can have a blood test as long as they take the blood from the back of my hand. For some reason It feel less vulnerable than opening your arms to the violence!
The last needle that touched me was a blood test in the back of my hand 20 years ago, I was only a kid but panicked so much they had the staff hold me down which only added to the fear.
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