Hi guys
I have been diagnosed with arthritis, bursitis and tendonisis in my hips. As well as the pain experienced directly in my hips, it seems to have set off my RLS symptoms. Does anyone else have this experience, or know anything about the effect of other muscular skeletal conditions on their RLS?. Thanks
Welcome to the forum. You will find lots of help, support and understanding here.
All of these cause inflammation and although the inflammation is local, inflammation makes RLS worse. You don't say how you are treating your RLS so I will give you the advice I would give a new patient.
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. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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...
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, C, 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.
Thanks for the prompt and informative reply, SueJohnson. Confirms what I thought about inflammation aggravating RLS.
I’m very lucky in that I have been managing my symptoms without drugs other than the occasional co-codamol to knock me out when I have a bad episode. I’m not ready for the ‘heavy guns’ yet!
With the complex hip issues, I get pain after activity and just recently it’s not just confined to my hip areas, but is much the same as RLS symptoms extending from waist to toes.
On a bad post activity day, taking co codamol 8/500 two or three times a day. Otherwise Vit D, very low dose HRT ( which doesn’t seem to have impacted on sypmtoms) and a multivitamin.
I’ll look into the iron tests. Thanks so much
I'm just wondering what you mean by 'activity day' because I've noticed if my mum does particular things (eg pushes a trolly around a supermarket), she really suffers?
RLS remains a mystery. Hip, knee or leg operations can trigger it in the first place.It's why we need billions spent on research.
SueJohnson has set out the information you need to follow.
Hopefully the RLS will settle as the bursitis is treated. Sometimes anti biotics can set it off.
There is a list of trigger meds on the RLS-UK website.
Thanks Joolsg. Can you post a link to the drugs that aggravate RLS? I can’t see it on the site.
Scroll down and it's under 'Medications to avoid'.
I've always had RL, but it wasn't too bothersome. In my 50s It was a little bit worse and I'd have to walk it off once per night. Then I developed oestearthritis at age 63 with hip pain and stiffness. This took my RL to a whole new level so I couldn't get any rest and spent nearly all night up with RL except for an hour or two sleep at most. I think it may be due to the inflammation. The only thing that helped me was 5mg methadone. I'm so relieved to be able to sleep now.
There is a link between all four diseases and that is inflammation. Although inflammation is often noticed where trauma has occured inflammation can be also be caused by the food that you eat. Google 'foods that cause inflammation' for a list. removing a few inflammatory foods from your diet might lessen the intensity but to eliminate it completely you need to be rigorus in cutting thaem all out all of the time.
There are also foods and vitamins that reduce inflammation to some extent e.g. Vit A, Vit D3, green tea etc.
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