I have a lot of arthritis pain that has worsened considerably over the last few months.
At the moment I am on a three year waiting list for a knee replacement op. I live in North Wales. Incidentally I am also on a three year waiting list to attend the Pain Management Clinic.
I take 8 Cocodamol a day and for my restless I take 1.50 or 1.75mg of Clonazepam.
During the last few weeks my restless legs have been dreadful and have spent hours in the night out of bed.
I think the knee pain is exacerbating my RLS, but now I wonder if having the trauma of surgery will aggravate my RLS even further.
I have had a wonderful release from RLS,, say 80%, since augmenting then weaning off Ropinerole ( nightmare) and using Clonazepam instead. But it all seems to be falling apart now.
I attended a wonderful GP practice until moving to a bungalow this year, but my new GP is not interested and rather dismissive of my various problems.
There is a terrible shortage of Surgeries in Wrexham, since many have closed and we struggled to find a GP.
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NonnieJ
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Have you thought about taking gabapentin or pregabalin? Have you had your ferritin checked? Improving it to 100 or more helps 60% of people with RLS. 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.
Thank you Sue. I do take a lot of prescribed meds and I know one or two of them are reputed to be aggravators but I can't change them at the moment.
I had IV iron when my ferritin went down to 7 and the result was amazing. It is around 60 atm but Consultant Haematologist won't repeat it.
I have moved to a bungalow and had to change doctors. There are very few remaining GPs in Wrexham and we have managed to get registered with one, but I am not happy with him after having to leave my previous excellent practice. He is very dismissive and after 2 months still hasn't received my records.
I have so many complicated health issues and he seems not to be interested. I told him I was down for my knee op and he said "Don't go under the knife" so he doesn't give me much confidence!
I have read your advice and really appreciate it but my doctor is no help.
I am definitely going to mention Gabapentin/ Pregablin if I manage to get an appointment. Last week I phoned for emergency appointment and I was phoned back by someone who wasn't a doctor and said she'd refer me for physio!
You might want to print out the relevant sections of the Mayo Clinic Updated Algorithm on RLS to show him if needed since so many doctors are not up to date on RLS at Https://mayoclinicproceedings.org/a... Since you can't get an infusion, you can try raising your ferritin by taking iron tablets even though you don't absorb iron well. take two 325 mg of ferrous sulfate tablets with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every day preferably at night at the same time so it is at least 24 hours apart and at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. Don't take tumeric as it can interfere with the absorption of iron. If you take magnesium or calcium supplements don't take them at the same time as iron tablets as they interfere with iron's absorption. Take them at least 2 hours apart. Also antacids interfere with its absorption. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
I don't know. It depends if it can be absorbed before it reaches my stomach! It's a thought though and one that I will look into. Thanks for the suggestion,Sue.
Hi Nonnie, your celiac disease should only affect your small intestine in terms of ability to absorb nutrients. Non-heme iron (from plants) such as ferrous sulfate is absorbed in the small intestine and it doesn’t matter if it’s in liquid form. A better choice for you would be heme-iron (comes from meat) which is absorbed in the stomach. I like a brand called Proferrin. Try taking two capsules (which is equal to 100% of the RDA) about an hour before bed. Your stomach does not need to be empty, but it should be anyways. You will sleep better. If you’re like me you will feel the RLS disappear after about an hour and you can fall asleep without RLS. This is if you are like me. You never know!!! Plus, it sounds like you want to raise your ferritin and this is the way to do it if you have Celiac. Proferrin iron is not cheap sadly. Maybe you can find a cheaper heme-iron
As far as your knee goes there are the usual recommendations of ice, NSAID, weight loss and low impact exercise like walking and biking to keep all the muscles surrounding the knee in tip top shape. My personal favorite are hyaluronic injections. In the US they are given in a series of 3 or 4 shots spaced about two weeks apart. It’s a very viscose substance that will provide cushioning and can provide pain relief for 6 to 12 months. Last time I checked each shot is about $300. You would most likely have to go to a clinic and pay out of pocket. Here is an example of a clinic. Not sure how far it is from you. manchesterhipsurgeons.co.uk...
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, estrogen, 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, 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, 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, using a standing desk, listening to music and yoga.
The arthritis knee pain will definitely trigger RLS
Clonazepam works very well for RLS but you can become tolerant relatively quickly.
However, it could be your serum ferritin dropping. I know you had an iron infusion in the past.
Ask your GP for another full panel fasting blood test and check your levels.
Also speak to your GP about adding pregabalin as that will cover your RLS and it should also help the arthritis pain.
knee operations will trigger a worsening of RLS for most people but it should settle with the help of meds. Ensure the anaesthetist knows about your RLS and that the normal anti emetics/anti nausea drugs worsen RLS. Safe alternatives are zofran and kytril.
So first check your serum ferritin and supplement to raise levels or ask for another infusion and consider switching to pregabalin from clonazepam. Starting dose is 75mg, increasing by 25mg every 2 nights up to 150mg. Some people need higher doses up to 300mg. Pregabalin takes 3 weeks to be fully effective and the side effects of dizziness, nausea, leg swelling etc tend to settle after 2 months
I'm so sorry you're having to wait 3 years for a knee operation and a pain clinic. Sad, bad times.
Thank you Joolsg. Yes when I had my iron infusion it was great, However it stuck around the 60 mark for a long while and the doctor asked for an infusion. However the Consultant Haematologist refused. We have recently moved to a bungalow and sadly have had to change from our familiar and extremely helpful doctors. There is a tremendous lack of GPs around Wrexham and we struggled to get in anywhere.
I am not at all happy with the one we are registered with. I have a lot of medical issues but he isn't interested.
I have Coeliac disease and don't absorb iron but he says my iron is 100 now and fine. I have had Nerve Reaction tests as I have a lot of numbness, nerve discomfort and it was advised by the Hosp that my Gp needed to look into a number of things and also go on to Gabapentin. However after over two months he still hasn't received my records. I have chased them up and he should hopefully get them soon.
I think I will have to go privately for my knee, reluctantly, as we don't have money to spend on that sort of thing really. I appreciate all your advice. The Gabapentin does seem to have a lot of side effects, from what I hear.
I'm disappointed that Clonazepam can be coming less effective. It has been amazing for me up til now, but I have serious back issues & arthritis in my hips plus bursitis, and everything seems to be exacerbating my RLS.
I really appreciate your taking time to reply as you have done previously. I will try and get an appointment with my doctor, it is v hard and when I phoned for one last week all I had was a phone call and it wasn't even a doctor. I begged my old Practice to keep me on, but they couldn't.
If your doctor prescribes gabapentin or pregabalin. 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. 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) daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. 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...
Thanks again, Sue. It all comes back to finding a compassionate GP. And I have no options.
I am going to make a huge effort to see him and try and get somewhere. Changing doctors has been more traumatic than moving house and has cause so much anxiety.
It's not the pain that's causing the RLS but that the arthritis and the RLS are caused by the same thing, i.e. systemic inflammation caused most probably by what you're eating. Probably high GI processed foods like bread, fruit juices, refined sugars and refined starches, also refined seed oils and stress could be contributing as well.
Thank you Eryl. My knee pain. is largely because my knee has become deformed and turning the wrong way, but yes originally caused by arthritis. Arthritis runs in my family and to be honest I haven't found that what I eat causes any difference.
Yes pain does bring on RLS. But the post op surgery pain management knocks out the RLS for as long as you are on it. In fact low dose opioid therapy is a Mayo Clinic protocol for RLS
I am currently trying to get off Ropinerol. So glad to hear you were able to. I find the low Glutamine diet helps alot.
Thank you for replying. You will eventually get off the Ropinerole.
I take Cocodamol for pain and I think the codeine in it helps my RLS too. I really just needed to be able to blame my increased RLS on pain and not on a recurrence if it worsening.
Hi NonnieJ, I am totally sympathetic to your situation. It sounds dreadful and the very person who should be helping is oblivious! I am sorry.
I have found for many years that the pain from my arthritis triggers my legs so it's been a journey to find out what will control the pain as much as what stops the RLs. I now have good treatment with an opioid (buprenorphine) which is marvellous but when my arthritis is bad in my knee, it will often still trigger a bout of RL. I find rubbing an anti inflammatory into my knee does help, I've also tried Deep Heat which can work sometimes, and compression bandages on my lower legs and sometimes pulled up over my knee can help. I don't know if you can have a bath, but hot baths are also wonderful for my pain. I also use cold packs when the anti-inflammatory gel doesn't work (diclofenac gel), and use them out of the freezer wrapped in a tea towel.
The irony is that the only thing that helps my RL is to move about which in turn aggravates the pain from my arthritis so it can be a terrible cycle that goes on and on. I really do feel for you.
Sue and Jules have given great advice so I hope it will all help when your GP gets your notes and really listens. Do keep your chin up, we are all on your side and hoping for better things for you.
I seem to have lost my reply to you before I had finished! Thank you so much for such a sympathetic reply . I really appreciate all you have said and reading it really encouraged me.
Yes Nonnie it is. I'm in Australia where it's harder to obtain in the sublingual form but I know Jools is on it as are others. It is known as Temgesic I believe.
That was interesting information from SanAndreas . However the Proferrin has only 11 mg of elemental iron and you need around 65 mg so you will need to take 6 tablets.
It is interesting that in the study in the article that the ferritin was not raised. As far as ferrous bisglycinate it is a well known fact that it should be used if constipation is a problem and that a lesser amount of it is needed to equal that from ferrous sulfate.
It depends on your ferritin. Have you had it checked? If not ask for a full panel blood test. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be over 100. Generally speaking one 25 mg tablet. Take it with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it at the same time each day so it is at least 24 hours apart, preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. Don't take tumeric as it can interfere with the absorption of iron. If you take magnesium or calcium supplements don't take them at the same time as iron tablets as they interfere with iron's absorption. Take them at least 2 hours apart. Also antacids interfere with its absorption. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new full panel blood test after after 3 months.
Thank you for all your advice. Not had a ferritin test for some while but even then it was only 80. New GP whom I haven’t seen yet but I am due for full thyroid bloods soon so will ask then. Thank you
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