I am on the waiting list for a hip replacement and would like to ask of experiences. I do not take medication for my RLS, preferring to work through it, but am now getting a bit anxious on how I will cope after the op if my legs kick off especially when I get home.
Is it best to have an epidural or a general anaesthetic?
Any advice on how to survive the first few weeks with RLS after the op would be appreciated.
Tell your doctors and anesthesiologists about your RLS and its symptoms and ask if there will be any drug interactions from what they will give you. Also talk with the patient representative ahead of time. Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. Instead insist they use Zofran (ondansetron) for anti-nausea.
You can download the Medical Alert Card that you can show your doctors, that tells them about the condition and what will happen after surgery and what medicines to avoid at rlshelp.org/ although you will need to join the RLS foundation. An international membership is $40, but they have some good information on it and you get their monthly magazine. However the safe antidepressants listed on medical alert card are not antidepressants: Lamotrigine, Carbamazepine, Oxcarbazepine. Also there is a 2 page handout "Surgery and RLS: Patient Guide" on the RLS Foundation website which is very helpful. Also "Hospitalization Checklist for the Patient with RLS"
After your surgery your RLS may get worse for several reasons - inflammation from the surgery, withdrawal from any opioid they gave you and if there was blood loss your ferritin may have gone down so it is advisable to take iron tablets. All of these are temporary but may take awhile to go away. Increasing your medicine may help.
Although I normally wouldn't advise this, I would suggest you ask your doctor for a prescription for a few pills of ropinirole to use while you are in the hospital recovering. You will need to discuss this with the doctor performing the operation and the patient representative.
I don't have any advice on the anesthesia.
As far as afterwords I suggest you start taking pregabalin now and work up to what controls your RLS and then increase it after the surgery. If so then you won't need the ropinirole.
Beginning dose is usually 75 mg pregabalin. It will take 3 weeks before it is fully effective. After that increase it by 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. 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 200 to 300 mg pregabalin."
I suspect you will find that you want to continue on it after recovery from surgery but if not decrease it be 25 mg every 2 weeks or so to avoid withdrawal symptoms.
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 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.
Thanks for all the advice. I have been so used to managing it myself and though I mentioned it twice to the GPs all I got was a blank look. I was getting very anxious about after the op and at home for the next 6-12 weeks that I know I have to do something now so that you for the advice. I know mine is inherited as my mother also had it. I'm not a great one for taking medications but I guess needs must for this situation. I can't afford to wreck the replacement hip.
This is not related to your upcoming surgery but some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), 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. It is a good idea to keep a food diary to see if any food make your RLS worse.
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.
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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
Thanks Sue. I think I have tried most of the suggestions over the years but none see to make any difference, even food doesn't seem to play a part in it. I've tried cutting out just about everything you suggest for extended periods but still it persists.
Re the ferritin test, it takes an average of 4 weeks to get a date for a blood test in this area so think I may have run out of time by the time I get one and the GP decides to do something. My partner had to get very insistent for me to even get a referral to the hospital for my hip and when I got there, the consultant just said it was so bad that there was no other feasible treatment except a replacement. I don't know why healthcare has to be such a battle.
I remember discussing epidurals with my MS neurologist when I was pregnant decades ago. My main concern was that it would make RLS worse.She advised against an epidural. No research studies available- she just felt it best to avoid the spinal area.
In your case,as long as your doctors confirm general anaesthetic is safe for you, perhaps go for that.
Hip operations generally worsen RLS.
So you really will need medications.
Ask your GP and the surgeon for a low dose opioid to cover the RLS while you are 'incapacitated'. Codeine for example.
Nowadays they have you up and walking straight away so you will be able to move, but it may not stop the RLS.
I understand the delays in getting GP appointments and blood tests so send an urgent email to the surgery and the hospital doing the surgery.
Also make sure they are aware you have RLS and give you an RLS safe anti nauses med with your anaesthetic.
Ondansetron is safe.
Goldlay if you are in the UK Boots now sell home ferritin iron levels testing kits .
Wow thank you. I didn't know that. Yes I am in the UK.
Don't buy any of the cheap ones. The Quest one looks best.
Need advice on controlling RLS post -op 
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RLS in hospital - my experiences
need help from someone with similar experiences with pregabalin tapering 
