Hi thereI am a mess I have to say. I was diagnosed with fibromyalgia about 10 years ago after 25 years of pain that wouldn't go away.
I've had RLS on and off for the last 5 years I'd say but just this year it has become dramatically worse.
Effects my legs and arms mostly though I do feel it in my back as well.
All my siblings suffer the same condition and three of us are sharing the same big flare up this year.
Actually make that two as my dear brother passed away some months ago, diagnosis to death in two weeks, extremely aggressive cancer. I was at his side at the hospice and his limbs were completely uncontrollable. The staff told me that this was normal as the body fought passing away and there was a technical name for it. I didn't have the energy to argue but knew full well that instead the thrashing of the legs, punching of the air and arms thrust out like a zombie were his normal nighttime routine. The only difference being that this time he was very very heavily sedated in an attempt to let him pass in peace. It didn't work and to the last minute his only release was when he finally slipped away, there was no peace in it. The Hospice staff were incredulous and apologetic, they had never seen anyone take the amount of drugs they gave him and yet still be so awake restless and jerky.
I'm not for one minute associating the condition with cancer, my brother smoked 40 a day for fifty years. But I did wonder at the savage persistence of his nightly battles as it was in all honestly like watching myself try to sleep.
I am not a fan of the medical profession in this country, GPs in particular. Thirty years of pain will do that to you, sometimes its hard not to blame the one failing you rather than the actual disease itself.
Very interested to read about possible antihistamine association. I am asthmatic and have a hay-fever, animal fur and dust allergy.
I also suffer from tremors and vertigo for which I take betahistine and like to take full flush niacin for cholesterol and it's other benefits. In other words my histamine levels are all over the shop. So, interesting.
I wonder has anyone suffered 'hot foot' as a parallel or previous condition. By which I mean at nighttime one or both feet heat up to the extent that you can't sleep, have to dip them in cold water and hang them out the bed in the blessed cold. If you've ever had it then you'd know what I was talking about. I just wonder if there may be a connection is all.
Well I've gone on enough, no sleep last night but luckily I don't work and live on health related benefits so I will no doubt have a nap some time in the afternoon. Funny that I never get RLS when I nap in the day.
Lovely to meet you all, hope I'm too much of a downer, just needed a moan I guess.
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TwitchySue
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Welcome to the forum. You will find lots of help, support and understanding here.
Just off hand from your description it sounds more like PLMD.
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.
PLMD is when your legs and sometimes your arms move by themselves - usually in your sleep but can also occur during the day.
Regardless they are both treated the same way.
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 including in a multivitamin 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.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro patch (Rotigotine) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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. This will also help your fibromyalgia.
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. (You don't need to split the doses with pregabalin)
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 (200 to 300 mg pregabalin)."
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 within 2 hours for the same reason (not sure about pregabalin). 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 up-to-date 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, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. This includes antihistamines. If you are taking any I may be able to provide a safe alternative.
Doesn't sound at all like PLMD to me. PLMs tend to happen in a rhythmic, stereotypical manner. I assume you're referring to the threshing that the OP described (in relation to her late brother) however this isn't characteristic of PLMD and can occur for any number of reasons.
Thank you so much for the replies! Really, i did not expect such thought out and considerate responses but then that seems to be the spirit of this site.
Lots of information to take in and I want to do it justice so just a big heartfelt Gracias for now if that's okay
Hi do you have a bath or a shower I find doing some hydrotherapy in the bath by that I mean stretching the legs up against the end of the bath and keeping the feet out of the water and cold .🤔🤔
As you're not a fan of the medical profession have you investigated the effects of diet on your conditions? I've found that removing inflammatory foods from my diet has eliminated my RLS and I'm sure that it could have an impact on the severity of your fibromyalgia if not eliminate it completely. One of the major food impacts comes from foods which raise insulin levels but you can find lists of all possible causes of systemic inflammation by googling 'Foods that cause imflammation'. youtu.be/JjsuuTMZFfg?si=Er4...
Couldn't believe as I read your post...sounds like me without the RLS constant. I have fibromyalgia asthma olp tmj osteoporosis did lower back. Several food & medication allergies developed after age 50. I use to take a daily antihistamine tablet but stopped due to side effects and try to balance my food intake with low histamine foods and dao supplements. It's a scary maze trying to figure out how to cope. I also suffer high cholesterol even though I am not overweight. Low red blood count most of the time too. I really need to find a functional health practioner but each time I try I end up paying loads of money for an hours phone call that does not help my situation. Example tried one lady up north via zoom. £800 for oat test and thyroid panel test plus £500 consultation fee for one hour phone call. She suggested 3k for 6 one hour phone calls. I'll keep on searching for a functional practioner who offers more reasonable fees. Good luck x
Flipping Nora that is a lot of money! Absolute bastards for charging that much, who do they think they are. Makes me so angry these people, especially when they have a normal NHS practice with a 2 year waiting list.
Don't worry about your high choleserol because cholesterol is essential (it's what your hormones are made from) and people with high cholesterol live longer, blaming it for cardiovascular disease was a guess and has no basis in science. The reason for blood clots is that sugar sticks to blood cells not cholesterol clumping together.
Hi everyone.Quick disclaimer hope no one gets angry. I am the youngest of four siblings the oldest nearly 70. Twitchy Sue is what they affectionately call me and nowadays what we call each other.
It was a no brainer username but I am in fact a man called Stephen. I can see how that might colour some comments and I really don't want to be in any way deceitful.
Hope that's all good with everybody and I sincerely apologise if I have mislead anyone
Saw my GP today who is nowadays very genial as he botched up my brothers final weeks and misdiagnosed me with Parkinsons. I have familial tremors mostly in my hands but hey at least he showed interest.
Anyway I went to get my blood test results and arrange for access online to my records and tests. An excellent idea if anyone hasn't already done it.
While there I mentioned the lack of sleep I have been getting due to the constant need to move my limbs. He prescribed me valium which I am going to take in about 5 minutes with a view to trying to sleep at 12.
Incidentally for those of us who suffer from fibromyalgia I also asked to be put on Metformin as I had been taking my wife's for about 8 days and felt some real benefit from it. Had to be prescribed off label but there is significant evidence out there that it can be a wonder drug.
I don't necessarily expect the valium to work and I don't fancy being on it long term but it will be very interesting to see if it works for me.
Regards to all and I hope you get some sleep tonight
Well in the end I decided to give it a few nights on the old Valium to get a broader result. First couple of nights success and i was so happy, thought I'd cracked it, even went back to sleeping in the marital bed. Next nights tremors back along with violent nightmares that I act out, hadn't had them in a while, so back to sleeping on the couch for me.
I have complex PTSD for reasons I shan't bore you with and hopefully I will be starting new more relevant antidepressants having been on fluoxitine for 30 years. Hope springs eternal and I am will now see how these new beauties treat me although it will be a couple of weeks yet. Stopped the valium btw.
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