I am writing on behalf of my 89 year old mom who has been struggling with severe leg and back pain. Mom had Guillaune Barre Syndrome in 2009 resulting from the flu vaccine and both knee replacements prior to that. She is diabetic and otherwise cognitively fine. Her pain causes her syncope and we have had to rush her to the hospital numerous times. She also has RLS and severe pain in her foot especially her arch. Her spine is also severely degenerated. EGFR is 40 and the other medication she takes are:
Trajenta
Metformin 500mg
2000 ius of D3
.075 mcg of Synthroid
200mg of Gabapentin (4pm and 11pm)
Tylenol : 2gms to 3gms
2.5mg of Amlodipine (bedtime)
I am so impressed with this forum and I have my own challenges but first want to find solutions for mom as this is robbing her of a good quality life. She collapses at times in the washroom while defecating and the doctors attribute everything to pain which she has. We live in Canada and medical care is not like the US. Can you please suggest how to better manage her pain and RLS as she shakes her legs a lot and we have to massage her often and raise her legs. We also use compression stockings, Many Many thanks
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Mira_Mira
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Welcome to the forum. You will find lots of help, support and understanding here.
First lets make sure she has RLS? You say she shakes her legs a lot. Is this involuntary or is she doing it to stop her RLS.
All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.
Assuming she has RLS arthritis and any inflammation can make it worse.
Has she had her ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When she sees her doctor, she should ask for a full iron panel. She should 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. She should have her test in the morning before 9 am if possible. When she gets the results, she should ask for her ferritin and transferrin saturation (TSAT) numbers. She wants her 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 her transferrin saturation to be between 20% and 45%. If her ferritin is less than 100 or her transferrin saturation is not between 20% and 45% post back here and we can give you some advice.
The gabapentin is the right medicine for her to take but she is not taking enough and not in the right way. Assuming she has been taking it for at least 3 weeks she should increase it by 100 mg every couple of days until she finds the dose that works for her. She should take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If she needs more than 600 mg, she should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If she needs more than 1200 mg, she should 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."
However you mention neuropathy so that is probably why she is taking a dose at 4 pm so she can increase that one too.
If she takes magnesium she shouldn't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and she shouldn't take calcium within 2 hours for the same reason (not sure about pregabalin). Have her check out the Mayo Clinic Updated Algorithm on RLS which will tell her everything she wants to know including about its treatment and refer her 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.
Thank you very much Sue. You are so kind to respond back so promptly. God Bless You. She has not been diagnosed with RLS but I have. All of the symptoms are present except that the restlessness is on the right leg mainly and lets it hang of the bed. She also has severe pain in her lower back which could also be the reason. Her ferritin is 89 and she will be going for her full blood panel in a few weeks. She was on 25mg of Lyrica for 5 years and then switched to Gabapentin about a year and half ago. So she has been on 200mgs for sometime now. When I try to increase it to 300 she becomes more tired and we switch back to 200. How do I manage this increase? Her pain is such that just touching her muscles of her legs makes her jump. Then I rub her legs backwards and slowly release the knots and she finds comfort. Thank you
For her ferritin she should 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. Ferrous sulfate is fine for most people, but if she has problems with constipation, iron bisglycinate is better.
She should 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 she takes 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.
She shouldn't take iron tablets before or after exercise since inflammation peaks after a workout. She shouldn't take tumeric as it can interfere with the absorption of iron. Since she takes thyroid medicine as I mentioned she shouldn't take it within 4 hours. It takes several months for the iron tablets to slowly raise one's ferritin. She should ask for a new blood test after 3 months.
Since her ferritin was 89 unless she has been taking iron since then, it is very unlikely it has improved so she might want to wait until after she has been taking iron for 3 months.
Why did she change from lyrica?
The other thing she could try for her tiredness if she increases her gabapentin is adderal or ritalin. If she takes it in the morning it will wear off by night so she can sleep.
Since she can't increase her gabapentin she will probably need a low dose opioid like buprenorphine (you want the pills rather than the patch) or methadone. She shouldn't take the others as they wear off in 4 to 6 hours and she would get mini withdrawals unless she takes them that often. See the side panel Opioids for RLS - some useful information
Amlodipine is a calcium channel blocker and makes RLS worse for most. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....
Metformin which treats her diabetes can make RLS worse in some and can cause insomnia and leg tingling.
Trajenta is fine for her diabetes.
Synthroid can make RLS worse but unfortunately all thyroid medicines do. She should time her medicines so that you takes her thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium, iron or magnesium. Keep that in mind if she finds out her ferritin is low and she has to take iron.
Hi Sue, I have increased mom’s Gabapentin to 300mg from 200mg and notice some swelling in her feet which she generally does not have. Also as expected she is a bit more tired but I will try to work with it until her body gets used to. Should I reduce her fluid intake or just wait? Thank you
The swelling is a side effect of the gabapentin. I also have it. It is not a problem for me and my doctor has said I can ignore it. She definitely does not want to take a diuretic for it as that will make her RLS worse. If it is a real problem then she should reduce her dose. No need to reduce her fluid intake as that won't help.
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