I am 54 female and think I have had restless leg syndrome on and off since my early 20s. It started when I was in medication for anxiety and has been better and worse at various times. I am now diagnosed Autistic and Attention Deficit Hyperactivity Disorder and being undiagnosed most of my life had had a lot of other diagnoses generally relating to depression and anxiety. I have been on many medications for this but currently on on sertraline, also Azathioprine for Inflammatory Bowel Disease. Currently I am really struggling with urges to squirm my whole body especially but not limited to my legs which gets worse as soon as I relax. Nighttime is the worst time and I have been using lots of techniques to try to sleep but anything that uses relaxation tends to make me more squirmy. I am really struggling to sleep and just the anticipation of sleeping now is causing me anxiety. I start a new job this week so it’s possible new job worries are worsening it. I don’t know whether approaching my GP would be helpful and not sure how I can really explain it in an e consult. Any advice very gratefully received.
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2. If you have RLS, sertraline makes it worse for most. Trazodone is generally a safe antidepressant for RLS (or bupropion, but it's difficult to get this prescribed for depression in the UK).
3. Regret I have no info on azathioprine.
4. UK doctors are not trained in RLS, and NICE/NHS guidelines are largely out of date.
Their first step *should* be to arrange for a morning, fasting, blood test for serum ferritin and transferrin saturation. Most RLS sufferers benefit from iron therapy - please download and read the following:
Print it out in case you need to show it to your doctor. Note: most doctors don't know that RLS sufferers need higher levels of ferritin as indicated in the PDF: insist that they give you the actual results! Come back here with the numbers for further advice if needed.
5. Your doctor may then try to precribe a dopamine agonist - pramipexole, ropinirole or rotigotine: refuse - these are no longer recommended for treatment of RLS by experts!
Read the following on medications (and the piece further down that page on medications to avoid!):
Thank you so much. I have bloods taken regularly anyway because of they Azathioprine and my ferritin is usually low normal so that might be a place to start. I was prescribed antipsychotics in my 20s and that is when it started so the information has been very helpful. Thank you
I'm just going to address the AuDHD portion because I am also an Aspie with ADHD. It's because you said you have a bowel disease too -- there is a book out there that addresses this wrt autism. I did the protocol in this book for a year and got huge benefits. I had amazing quantities of worms -- and parasite tests came back negative!! I concluded that in the US they simply do not know how to test for parasites and people can have amazing amounts like I did and they will tell you that you are clear. I got out HANDFULS of ascaris worms one WEEK after I got back the negative results from the expensive, specialty lab test. So much for that, I thought. The book is called Healing the Symptoms Known as Autism and is aimed at those who "became autistic" even though they did not exhibit those symptoms at birth. I won't go into "how" they "became" autistic because it is so controversial. I will just say that I improved dramatically health wise by doing this protocol. The book is by Kerri Rivera and you can access it on an internet archive site.
Are you serious ?Your body, your choice, I suppose.
Are you REALLY advising *checks notes* the administration of CHLORINE DIOXIDE ENEMAS !????
As that is what (ahem) 'Dr' of 'homeopathy' and real estate agent, Grifter: Kerri Rivera- who has been banned on multiple sites for blatant medical disinformation - recommends !
Not to mention that followers of her protocols - namely parents who forced INDUSTRIAL BLEACH (!) into their autistic and adhd children, have had said children removed from their care for abuse...
👏Chlorine👏Dioxide👏is👏Industrial👏Bleach👏
Used in paper mills to bleach paper.
Your worms (and did you actually take them to an accredited laboratory to make sure that is what they were (?) are most likely the lining of your intestines !
There is NO CURE for neurodivergence !
It is not a disease. The neurodiverse make the world a richer and more wonderful place.
Your recommendation is dangerous disinformation.
I am mother to a daughter with adhd and her partner has autism. Thank God no one ever tried to 'cure' them.
If I am 'harsh' it is because I loathe disinformation - I fell down that 'rabbit hole' many, many years ago.
I came out of it more damaged, more ill and much poorer !
I see you are fully indoctrinated which of course is your choice. I did that protocol for a year and it restored my health just as it has restored the health of hundreds of formerly "autisitic" childen who were merely suffering the consequences of our poisonous allopathiic "medical" system. My tenet is that literally everything depends on the evidence you choose to believe. Clearly you and I choose to believe different evidence. I'm a Reiki Master and hands-on healer for my church.
Welcome to the forum. You will find lots of help, support and understanding here.
It certainly sounds like you have 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.
As Chris said above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) or Neupro. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. which believe me you don't want.
Instead ask your doctor to prescribe 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 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...
As Chris says sertraline makes RLS worse for most and trazodone and bupropian are safe. Trazodone also treats anxiety. Azathioprine is fine.
What was your ferritin number and your TSAT (transferrin saturation percentage? 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 you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, 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 tumeric as it can interfere with the absorption of iron. 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.
If your ferritin is below 50 or your TSAT is below 20% ask for an iron transfusion. If you can't get one through your doctor you can get one privately for around £800. if so post back here and we can tell you where to get it.
In fact with IBD oral iron is poorly absorbed so you probably do need to take double the iron or get an iron infusion.
Who is your GP? Most do not know anything about RLS. If you tell us his/her name we may know if s/he is. If not and you tell us what city you live in we may be able to give you the name of one who is.
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.
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 so much. I was on pregablin for anxiety but have tapered off. Still had RLS when on 450mg a day but might be why it’s getting worse. My ferritin is usually about 30 so that is worth exploring. Also on Adcal supplement from GP and sometimes Laxido. I recently had a hysterectomy and was dreading being in hospital post op and squirming about but I was fine and now looking back it was probably the morphine as it very very rare to have a night without symptoms. I am also an ultramarathoner runner so do you know if this would be relevant? Thank you so much. I have mentioned it several times to psychiatrists and mental health nurses but they have never taken it at all seriously so this is really helping. My husband has said I often kick and thrash around at night even when I am asleep so would this change the management at all? Thank you again.
Just for the record the only time in the last decade or so that i have been totally free of RLS was post a major spinal operation and I am positive that was due to the drugs given to me during the operation and immediately after. The freedom lasted a surprisingly long period, about 3-4 weeks, before RLS came back
Please follow the guidance of the other replies from the helpful contributors to this forum. They know more then 99% of doctors when it comes to RLS
Laxido and the adcal are fine. Your kicking and trashing around at night is probably PLMD (Periodical Limb Movement Disease) which is treated the same way as RLS.
I am surprised the pregabalin didn't work but if you were on sertraline at the time, that might have been the reason. By the way don't just stop it. You need to wean off it.
Yes that is a really low ferritin so improving it might help. The fact your doctor didn't suggest improving it shows s/he knows nothing about RLS as that is the first thing that should be done.
Yes as a ultra marathon runner that might make it worse so train in the mornings.
Having surgery increases inflammation and that too makes it worse. (Seems like everything makes it worse doesn't it?😀)
Morphine as you found out stops RLS and is often used to treat RLS when other things don't work although when it wears off it makes RLS worse (there we go again😀)
It does sound like you need a new doctor so do tell us what city you live in.
I live in Southampton, use Hedge End Medical Centre. Also was on 10mg melatonin from psychiatrist which I reduced to 2mg recently. She also prescribed an antihistamine for sleeping which I only took once but made it worse which seems to make sense now I have read more. See different doctor each time and bloods are really just for monitoring for Azathioprine so probably didn’t think about it then.
Dr Giovanni Antonio Cocco, a neurologist at Bournemouth - Mediclinic Parkview Hospital. He uses the Mayo algorithm and indicated that his colleagues at the hospital did the same. Recommended by restlessinlondon.
Sedating antihistamines make RLS worse as you found out. There are safe ones but they won't help with insomnia.
You may need a referral from your GP. Ask for it and tell him/her why. Although he is not in Southampton you may need to only see him once and then can do telehealth.
There's an established link between ADHD and periodic limb movement disorder (a condition related to RLS). And as you're probably also aware, ASD is comorbid with a number of sleep disorders. Ideally you'd want to see someone with an understanding of your various conditions. Getting good advice may make all the difference. A neuropsychiatrist would likely be the most appropriate person to see.
I'm wondering whether if by treating your anxiety with appropriate medication, it may also help your RLS. By appropriate, i'm thinking of medications such as Buproprion, Trazadone, and Valdoxan (agomelatine). I don't know if Valdoxan is available in the UK, perhaps SueJohnson ChrisColumbus Joolsg or another forum regular can advise?
Agomelatine (Valdoxan) is prescribable in the UK for major depression: a couple of members have reported that they found it safe for RLS.
Buspirone (Buspar) can be prescribed for short term use for anxiety: it's generally regarded as safe, but some say not.
Bupropion (Zyban) is now only licensed to aid smoking cessation here, but can be prescribed off-licence for depression or ADHD in some NHS Trust areas - but generally only by a specialist (often a psychiatrist) with the approval of his head of department. More often than not it's still refused, despite the fact that sufferers have found that other antidepressants make RLS worse.
Intense physical exercise makes RLS worse for many and ultramarathons are right up there with the most intense. I find a good balance at about 10k brisk steps ideally with some hills plus generally keeping active helps, and as Sue says try to keep it early in the day. If I do that I sleep relatively well, just up 2 or 3 times. . However I’m a keen cyclist and hill walker so I do also have harder days and just accept that it’s going to be a worse night, sometimes being very restless doing cycling motions in bed similar to what you describe and waking 7 or 8 times and each time taking 20 -30 minutes walk around to settle the legs enough to sleep. However if I have a couple of weeks off training the difference is quite noticeable so it might be worth trying that as an experiment but I imagine you will still want to do the running. Sertraline can make things worse as Chris says. I took pregabalin for neuropathic pain after a back injury and it didn’t seem to do anything for my RLS at 300mg a day so I stopped it (gradually). I have seen posts in the last where people said melatonin also made RLS worse but haven’t seen anything recently. As to what you can do to make things better without alternative medication such as buprenorphine , some people find that certain foods trigger RLS e.g. sugar glutamate, alcohol, and I have found that eating earlier and cutting back on carbs can also help. I don’t have coffee after midday because it stops me sleeping, although it doesn’t seem to make the RLS worse and other good sleep hygiene habits can help, e.g. a cool bedroom, not looking a screens with blue light etc. I supplement my iron with iron bisglycinate and managed to get my ferritin from 70 µg/L to 170 µg/L over several months which I think helps make the twitching and restlessness less severe. I do want to try an iron infusion at some point. There’s a lot of good advice from others already so it will need some thinking to know what to try next. All the best.
Thank you so much. Ultramarathons help me so much with my mood you are right giving it up would be an absolute last resort. But trying to generally exercise as early as possible in the day. I also am bulimic which is sometimes more or less under control so that will likely affect electrolytes and obviously sometimes have large amounts of carbohydrates which isn’t good. I am going to start a course with a nutritionist online (not going to get any NHS help) so will mention the RLS to her too. Thanks for the help.
You clearly have a few things going on in your life. When I was at my lowest with severe back pain and unable to do the things I loved, or even function as a useful family member/parent, I started meditation which I found very useful to help me understand and accept what was happening, but also to see more clearly the narrative of fear and anxiety which was making things worse. All too often I'd get depressed with my worst case expectations of a poor quality of life and I didn't appreciate any of the good things that were happening and didn't see small changes and improvements. All this just raised my stress levels, fired up my sympathetic nervous system and made everything worse. Meditation helped me see the thoughts for what they were, just thoughts, and to focus on the reality which gradually improved, helped by a more positive mindset. As an aside, pregabalin did help here by reducing anxiety which allowed me to see that while I had a back issue which would probably always be there, it also wasn't the end of the world so it had some benefit although it didn't seem to help the RLS. I still meditate to try to stay grounded, experience the present, and not get caught up in my mind's speculative thoughts.
Thank you for this post. You have very clearly and succinctly described how I have felt, in a large part because of RLS, for the last 30 years. I have managed to pull myself from "my lowest depths" with the help of this community and buprenorphine, but there is so much more I need to do and honestly your post helps me see that. Thanks so much!
The thing about coping with RLS is that there are so many variables, and what works for one person does not for others. This can be very confusing. So a big part of learning to live with the condition is working out what works for you, and what your triggers are, as the others have said. Take the recommendation for exercising only in the morning. That doesn't work for me most of the time. Any cardio-type exercise (in my case a 45-60 min walk with hills) done after about 2.30pm works pretty well in general. Anything before that doesn't work so well. Then again, if I have to walk early in the morning it is generally during summer when the temperature is forecast to be over 28 degrees (I live in Australia). Temperature is a trigger for me. I LOVE winter. I also do 30-45 min pilates every day, and that I do in the morning.
I am on 75 mg of Pregabalin - I can barely cope with the mental fog that comes with higher dosages. 75 mg dampens down my RLS and helps me sleep, but I still get breakthroughs from once to about 6 or 7 times a night. How I cope with this, and you might find this useful as you are young and fit enough for falls not to be an issue, is to run up and down the stairs (maybe walk is a better description in my case) a number of times when the breakthrough happens. I got away with 8 times a breakthrough about two or three years ago, before I was on Pregabalin and before the condition got really bad, but now I find 14 times up and down the stairs per breakthrough is my sweet spot. I fall asleep directly after I have finished my stair reps, with a bit of help from a relaxation meditation to stop the interior monologues. I don't sleep during the day, and most days (except high summer) I have enough energy to cope. I don't know of anyone else that uses the stair reps, but you may find it worth trying, given you are an ultra-marathoner. By the way, there may be some merit for you in the recommendation that you don't overdo the ultra -bit of the marathon - again it is a matter of finding what your sweet spot is, whether there is an activity level that correlates with less (or more) RLS. And as Sue and others have said, watch out for medications that make the condition worse. Good luck.
Here's another one to try. When I used to get RLS I did the exercises for the leg involved as described under calf stretch and front thigh stretch at healthline.com/health/restl... In addition, I walked for about 3 to 4 minutes rolling the foot of the leg affected back and forth as I walked. It worked every time although I might wake up later at night and have to do them again. Actually on the calf stretch I didn't hold it for 20 seconds, but instead did the exercise for 20 - 30 times. I also pushed my heel back before I leaned forward. I, also moved my leg to each side when it is stretched. On the thigh stretch, I only held it for a few seconds, but then repeated it 6 - 10 times.
Thank you for sharing your experience. It sounds incredibly challenging to deal with restless leg syndrome, especially with the added complexities of your diagnosis and current medications. It must be really tough because it worsens at night and affects your sleep.
Since relaxation techniques worsen symptoms, it might be worth discussing with your GP. They can help evaluate whether there's a connection between your current medications and conditions and explore other treatment options or adjustments.
In addition, you might consider asking your GP about magnesium citrate, like this one amazon.com/Magnesium-Citrat.... Some believe magnesium supplements can help with restless legs and improve sleep quality. Magnesium citrate is known for its high absorption rate and might be worth exploring as part of your regimen.
When reaching out to your GP, detailing how your symptoms impact your daily life and sleep can help them better understand your situation. Mention any patterns or triggers you've noticed or concerns about your current treatments.
Wishing you the best with your new job and hope you find relief and better sleep soon.
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