HelloI have asked for advice in the past and was very grateful for the help. So here I am again!
I suffer with RLS, I take Gabapentin 1200mg. 5 weeks ago I had surgery for complete knee replacement, now my RLS is much worse, mainly the leg that was operated on, plus I am now having my toes constantly twitch and then cramp up!! Im not sleeping well due to this, I have been to the doctor's and he has increased my Gabapentin to one tablet extra, which is now 1500mg! I have had a blood test, as I told him could it be my iron levels, looking at my results it's come back as normal. Now is this likely to settle down
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Hive
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If you are bordeline anaemic-you should get an iron infusion. Where are you? Several UK haematology departments are aware of the benefits of iron infusions for RLS. Your GP can refer you.It can take months/years to raise serum ferritin to the required level for RLS.
Ferrous bisglycinate usually comes in 20 or 25mg pills. Take 2 pills every other day as per 'iron therapy' on RLS-UK website under 'Useful resources'.
You can print it off and show the GP.
A private infusion will cost around £800.
Prof Toby Richards runs the Iron Clinic in Harley Street London and Manchester.
You can send a copy of your iron panel results and he will arrange an infusion.
Several neurologists will now arrange NHS infusions.
I've not had any surgery but my knees are not very good, sleeping with a pillow between my legs helps a lot, apparently I violently bang my knees together in the night.
If I have a blood test I ask for and save printouts from the surgery, it's handy for posts such as this. I know I've got blood tests with ferritin level at 30ug/l showing as no action required
Printouts are very good but if you also sign up with "Patients Know Best" you will have your blood tests arrive online even before the GP gets them. Very useful especially as they arrive also in the evening and during the weekend when your GPs is closed. You can access them anytime once they've arrived. Usually, they arrive a couple of hours after the test is done. They come with graphs which enable you to see progress over time. Also, you get imaging results and other procedures in detail. Though they take a bit longer.
I use them for CT scans to see if my cancer has come back. Also, to check my eGFR to see how my kidneys are deteriorating. On one occasion, as an inpatient after my cancer surgery, I was able to quickly see that the blood test had not been done properly and needed redoing. The staff had no idea and I was able to point it out and they quickly re-did it. Also, they misread the results of one test and were giving me the wrong treatment and I was able to put them right.
It's recommended by the NHS. And it's totally free.
Powerful stuff. Essential, in my opinion. Best medical development I've seen in years. Puts the patient in control.
I agree with Joolsg. The increased symptoms should go away before long. The you will want to ask for 100 mg gabapentin capsules so you can reduce by 100 mg every 2 weeks until you get back to 1200 mg.
Do call the doctor's office and ask what your ferritin and TSAT (transferrin saturation percentage) is and reply back here as the advice may be different.
Meanwhile take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Hello SueSorry for the delay, but I only saw my GP yesterday, I asked about my ferritin levels etc and he said they are normal. I explained to him what you had said and he said again there is nothing to worry about it's normal!! He did admit I was leaving he doesn't know much about RLS! He has given me a low dose of Codiene, just to take the edge off, for when it's really bad. I have now got my iron supplement, so I'm taking that now. I'm hoping once things have settled down with my leg the RLS will improve!
My husband has said, if things don't improve, perhaps I should ask to see a specialist in this field, even if we do have to pay for it !
Thanks again to you and everyone else for all the advice!!
Ask him what the actual number is. You are entitled to know. Normal means nothing for RLS. Report it back here as that will affect how much iron you should take or whether you even need it.What is the name of the iron you got and how many mg?
That's great he gave you codeine. If you take it more than occasionally you need to take it every 4 hours or you may suffer mini withdrawals.
I'm taking what you recommended I should take for the iron. Can the receptionists give me a printout or it will be another week at least to get an appointment?
Looking back at the results you printed before I find it a little confusing myself. Call the office and ask if the 234 number is your ferritin number. If so then you don't need to take any iron.
Thank you Sue,I will ask my doctor, hoping to see him next week. I have looked up my results and yes it says 'Normal'! This is what it says,
Serum Ferritin levels Normal, lcb-92g
(XE24r) 234ng/ml
Female:100-310ug/L normal.
I don't understand these numbers, would they be different here in the UK to the US?
I will also get the supplements you suggest. I'm not sure if Gabapentin comes in 100mg, they have always given it to me in 300mg, but I will ask.
My toes have twitched in the past with the RLS, but they are constantly twitching at night and cramp up which is painful. This drives me mad and I have had baths in the night!!! I'm not back to work until 2weeks time, so lack of sleep isn't a major issue, but when I'm back at work it's a different matter!! Any suggestions would be greatly appreciated.
This is a UK site Hive. Run by RLS-UK.Those are the ranges presumably.
Do you have an actual figure for your serum ferritin? If your figure is 92ug/L you will still benefit from taking iron supplements every other day.
NICE and Mayo recommend an iron infusion if levels are between 75 and 100ųg because it's harder to raise levels in this range by oral iron.
The NHS is a postcode lottery. Most hospitals and haematology departments aren't very knowledgeable about the benefits of iron infusions for RLS. There are a few.
Where are you?
Private iron infusions are available via the Iron Clinic in London and Manchester for £800. But there's no guarantee you will benefit. So it might be better to push for NHS.
Dr Robin Fackrell in Bath is excellent. He can arrange Iron infusions. But he may have a very long NHS wait list.He costs around £300 for a private consultation.
Thank you, I will if it settles down or not, after I try what has been advised etc, plus what my doctor has to say next time I see him (next week). I know my husband would say, it could £300 well spent!!
Hello Hive, post surgery you'll have increased inflammation which really sets off the twitching and fidgeting. I had hip replacement and within 3 to 4 weeks I was 'normal' again with my RLS. Do your exercises and then elevate and ice as you are directed. Best wishes for a fast knee recovery.
I’ve had 3 knee replacements and it seems that blood circulation is one if the problems. RLS definitely got worse with me after the operations. I’m on pramipexol and targinact and touch wood my RLS is manageable. I feel it’s very much an individual disease where you have to find your own remedies. Real good luck with yours.
Hopefully you will be fine. Just tell your consultant that you suffer with RLS and they can give you different medication, for anti sickness etc, this is what I didn't think of. Good luck
I had double hip repair surgery last Feb and I started with restless legs and muscle twitching and cramps that have persisted. I’m slowly getting better with the help of dogged determination to work out why …. Ie was it inflammation, coming off the opioids, circulatory, nerves being aggravated, loss of blood and low iron and working to challenge each of those theories
The RLS is reasonably managed with a buprenorphine patch but the muscle twitching and cramps persist and can wax and wane so its trial and error to understand the nerve excitability that’s driving that.
I take iron bisglycinate every evening with vitamin c and a probiotic
In the morning I take magnesium, b12 , folate coQ10 and a few other supplements
I’m gradually making progress
The people on here have been amazing with their advice
I’m so sorry for your increased symptoms. I have had 4 joint replacements and have had an uptick in symptoms each time. It’s a guarantee for me. That is the only reason that I am dragging my feet on a hip replacement that I need. I took notes after my last two replacements just to see how long this lasts. Seven months for my last 2 joints. My RLS symptom did slowly improve but it wasn’t until the 7th month that my methadone controlled my symptoms. This last time, I did get an iron infusion, but unfortunately it didn’t help. So I don’t know the reason but I hope that your RLS subsides soon. Good luck on your healing too.
Have had RLS for about 25 years, I take 1200mg of gabapentin daily. I also had total knee replacement surgery on my right knee. At the time of the surgery, about a year ago, I was taking 300mg of pregabalin a day for my RLS. Amazingly, after surgery I had almost no pain. I remarked about this to my doctor and he mentioned that they had administered pregabalin just prior to my surgery to help control the pain. I imagine that the medication he administered in addition to the pregabalin that I was already taking must have led to the lack of any substantial pain. I had no change in my RLS after surgery. Perhaps the pregabalin helped but it is hard to know. As many have said, everyone is different. I do switch between pregabalin and gabapentin about every six months only because each has its own side effects which can be annoying.
I had same issues when my knee was replaced one year ago. The inflammation from the surgery makes RLS worse. It took about two or three months before it abated. Good luck.
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