Hi all. Happy Easter all. I really hope that you are all managing to cope with this horrible ' Syndrome '.I have been quite ill and the RLS flared up quite badly despite the Buprenorphine so I asked for a face to face appointment with my Dr. which he agreed to ! I don't understand why we can't phone our Surgery and just get an appointment to actually see a Dr. It's crazy! I have a bit of a problem with my speech since the lung cancer so being on the phone is difficult for me! Grrrr!And breathe! I have agreed to take Gabapentin 300 mg which I tried a few years ago and didn't like. Having a " massive " sliding hiatus hernia " plus Diverticulitis plus, the Gabapentin hurt my tummy and I didn't like the way it made me feel but maybe I didn't give it long enough. I am finding that they actually do help my legs ! I need to speak to my Dr. again ( if I can get an appointment! ) about how to take them because of my spinal fracture and the trapped nerves , I am now finding that the RLS is there all the time if I don't take medication through the day but the Gabapentin is for 3 at night. I am currently taking 2 at night and 1 in the morning. The problem is that they affect my balance badly and I'm so tired. I have only been taking them for a week so does this calm down? I push myself to do things but what an effort that takes! I am going to phone the Surgery and ask for a blood test to check my Ferritin level because it's always low but here they think that 30 is normal but mine is either below that or 32 but if it's not 30 and over they won't do anything. The trouble is giving them information about RLS , I think that they just throw the information in the bin !
When I go quiet it's because I am really not well but I still think about you all and send my love. I'm waiting for results just now to see whether the cancer has come back . Always something. Hi to Jools and Sue. I don't know where I would be now without your advice and support. I haven't been able to flood our Surgeries and hospitals with information about RLS yet because I've been so ill but I will because here in the Highlands of Scotland it seems that none of the medical profession knows much about RLS ! Thank you so much to both of you for everything you have done for me and thank you to everybody for your advice and support. No doubt I will be back! Take care. I will message you Jools if that's alright?! Love to all. xxx
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Danni54
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We love you at all times and understand your frustrating journey.
It must be distressing to have to deal with such ignorance for so much of the time.
J and S will be along to give specific advice, but do be aware that many of us have- and are on similar journeys, and deeply understand where you are coming from.
I do hope you get good news from your tests, and continue to have enough strength to continue the battle!💚😎
Thank you so much for understanding. I just read your bio and see that you, also, have a back injury. Is that what's causing your RLS. Fractured vertebrae with trapped nerves is incredibly painful! I'm so sorry about your back injury and for your problems. Good job that we are fighters! Keep fighting! 🙂👍😇😀
You are one of the nicest people I have ever met ❤! Thank you for that because I wasn't sure how long the side effects lasted. My balance is awful but I push myself and got up today, had a shower ( we had a disabled bathroom put in thank goodness! ) , did some boring housework and made myself do a bit of gardening which isn't great for my back but needs to be done! Husband can't deal with plants! Gabapentin makes me waffle!! Sorry!As for the iron infusion, my Dr. said that the hospital refused to give me one! I do wonder whether he asked. I am so angry that up here we have to ask for blood tests. The last test I had , the Dr. actually rang me with the results and said that my thyroid was working too hard so I needed higher Thyroxine, Ferritin was 32 so that was fine! I disagreed , she ignored that ! My Folate was very low. I think that that shows that something is not right and I've been feeling quite ill. They gave me a few pills but no Iron! Apart from side effects from medication, I am just exhausted all the time. This is not really living! I don't think that I'm old at 72 !! I just hope that the cancer isn't back! If it is then I will fight it again!!
Thank you again Jools. You are a good friend and thank you for all of your hard work on our behalf.
❤️ I lost my faith in UK doctors years ago.Thyroid disease is linked to low iron as well!
Professor Toby Richards does iron infusions privately for around £800.
I do hope you manage to get an infusion.
My GP refused. Professor Ray Chaudhuri refused telling me it could kill me ( that's how out of date & behind on research he is). So I wrote directly to the haematology department at my local teaching hospital.
They were very interested. They read the research papers I sent and agreed to do an infusion on the NHS.
It didn't work for me. Probably because i had spent 12 years on Ropinirole.
Beginning dose is usually 300 mg gabapentin. It will take 3 weeks before it is fully effective. After that increase it by 100 mg 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.
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."
Since you also have RLS during the day you can take it during the day too again in 600 mg doses divided by 2 hours.
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 nor antacids within 2 hours for the same reason.
Planned Investigation Unit, Neurosciences at Aberdeen Royal Infirmary gives iron infusions but I don't know if they will do a private one. If you find out let me know for my notes.
Since ferrous fumarate didn't agree with you, you might want to try gentle iron (Ferrous Bisglycinate) which is OTC. I would start out with a small dose - 25 mg to see whether it is a problem. Take it with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it helps its absorption. And you can also take apo-lactoferrin which also helps its absorption. If it doesn't bother you try slowly increasing the amount to 75 mg. If it does bother you try taking it with food.
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.
Thank you so much for all of that information Sue. I will get my husband to print it out. I have been taking Magnesium but nobody tells us how to take it when you are taking other medication .I did know about the antacids because I have to take Lansoprazole. I am going to have to push myself to get in contact with people that Jools has told me about and I will contact Aberdeen Royal Infirmary and let you know what they say. I would be quite happy to go privately. Getting there might be problematic as we are about 3 hours away but I'm stubborn!!Thank you for being there for all of us and for all of your information and support. Take care. All the very best wishes, Danni x
I thought you lived in Aberdeen? If not tell me where you do live and I might have one closer.
Lansoprazole is a proton pump inhibitor (PPI) and can interfere with the absorption of iron even if taken 2 hours before iron and if taken long term magnesium so should be checked. RLS-UK says most proton pump Inhibitors worsen RLS. I would suggest Gaviscon Advance, be sure it is the Advance unless you are bothered by aspartame in the tablets or saccharin in the liquid . It is OTC or you can get it on Amazon. Take it 30 minutes after eating and 4 hours before or 2 hours after taking iron. Don't take it within 2 hours of taking gabapentin or antihistamines. However if it was prescribed to prevent upper GI inflammation and bleeding caused by long term use of NSAIDs that is a different story and you shouldn't stop it. Discuss this with your doctor.
Thanks again Sue. I live north of Inverness! Beautiful but lacking good health care and I'm not the only one to say that. I told you all here about being left with a tumour on my lung for 15 months with no treatment and I then had Pneumonia when they ' refound ' the tumour and was sent to Glasgow for a Lobectomy. I was asked why I hadn't had anything done about the tumour....I didn't know that I had one! Anyway, I could tell you more awful things that have happened to people that we know in our hospital. It's scary to be honest! Thank you again Sue. I will be back!
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