I’ve had RLS ever since I was a child, I never felt a need to have official diagnosis as it wasn’t severe and knew my triggers and how to elevate the symptoms. But now I feel like I’m going insane last 4 months. It’s my second pregnancy, first one was easy, not much difference in symptoms, but this one is so bad. I barely sleep anymore, I have to move constantly, wake up multiple times a night to walk around the house and then can’t fall asleep again. I have to move all day and when I try to rest, 5 minutes and pain is there again. I can feel it in legs and arms- even my fingers hurt once after very short nap one day! I can’t cope with it anymore, I just want to cry. On top of that I work 2x12h days and 2x12h nights a week, so I’m constantly exhausted and in pain.
I had blood tests done and my iron is fine, everything seems to be fine. I don’t drink coffee or anything caffeinated, don’t smoke, take drugs or drink alcohol and try to eat healthy.
My gp is useless but I have midwife appointment tomorrow and will definitely mention that. Until then if anyone has any advice or suggestions how to approach this subject with my midwife, I’m all ears.
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Welcome to the forum. You will find lots of help, support and understanding here.
Doctors will say your iron is fine, but what is normal for others is not normal for those with RLS. Do you know what your ferritin is? that is the most important number and you want it to be over 100. If you don't know ask. In pregnancy you need lots of iron.
Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms.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 two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg 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 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.
An iron infusion will bring it up more quickly. If your doctor won't authorize it you can also get one privately by paying for it, but it costs around £800.
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 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 or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
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, 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, 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.
The symptoms will get better after you give birth, but if they are still bothersome be sure to post back on the forum and we can give advice on what to take and not to take.
Your ferritin is much too low. Start taking the iron while you wait to see if you can get an an iron infusion. They are over the counter so you don't need a prescription.
I'll bet your iron isn't fine at all. Your serum ferritin needs to be above 100ųg/L, preferably 200ųg/L. Pregnancy uses up 1000mg of iron and most people first experience RLS during pregnancy.There are no meds that are safe during pregnancy and UK GPs know zero as they have no training at all on RLS.
I suggest you contact Professor Toby Richards at the Iron Clinic in Harley Street. Send your iron blood test results, including serum ferritin to him and he will arrange an iron infusion. That will be the fastest way to raise your brain iron and to relieve the RLS.
And after pregnancy, if the iron infusion doesn't help, and you still have RLS, NEVER allow doctors to prescribe a dopamine agonist ( Ropinirole, Pramipexole, neupro). They are no longer prescribed by knowledgeable doctors as they will all feed the disease and make it much, much worse. But hopefully, the iron infusion will resolve your RLS. If you live near St George's in Tooting, the Royal Cornwall in Truro, or Salford or Sheffield, those hospitals have haematology departments that are aware of the link between low iron and RLS and are likely to arrange NHS infusion. Otherwise, sadly, it is worth finding the £800 for the private iron infusion.
I really appreciate your help. I will contact the iron clinic, but I’m afraid I might not be able to afford £800 on infusion. I will try my GP, but as I said he’s pretty useless.
You can sometimes get an Iron infusion on the NHS if you live near a hospital with a haematology dept that is up to date on RLS. But, as you will experience, UK doctors know nothing as RLS isn't taught at med school or during GP training. Even neurologists aren't taught anything about RLS! There are a few who know more than the basics, but it is a national scandal.Call the Iron Clinic, as they may be able to offer a payment plan. Raising your ferritin is the fastest way to get relief.
As GP has said bloods are fine ( they won't be as your serum ferritin will be below 100ųg!), you can take gentle iron bought from Boots or Holland and Barrett. If you take gentle iron every OTHER night on an empty stomach with vit C, it raises iron levels faster than taking every day. Hepcidin blocks iron absorption if iron pills are taken daily or more than once a day.
Also try rubbing magnesium oil.on your legs as that helps some.
Some people get temporary relief using massage guns or with the therapulse leg device. It costs £50. Some say it only helps while using it and the effects do not last.
Gentle iron is ferrous bisglycinate and can be bought over the counter here in the UK. Boots and Holland and Barrett do it. It causes less constipation.There is a lot of anecdotal evidence on here that it helps with RLS.
Most people on here have researched RLS extensively. We've had to, because our GPs and neurologists are not taught anything. There are around 3 or 4 neurologists in the UK that are totally up to date with the latest teaching and research, as set out in the Mayo Clinic Algorithm. But, as it is a US treatment Algorithm, UK doctors can be reluctant to accept it. The NHS and NICE guidance are outdated and do not yet reflect the move away from prescribing dopamine agonists. The main problem patients face now is drug-induced worsening on these drugs and many UK doctors have no idea how to help and they refuse to prescribe low dose opioids, which are very safe and effective.
Have a look at RLS-UK website and the Mayo Clinic Algorithm. Another great website is Relacs, run by Dr Andy Berkowski in Ohio. He co wrote the Mayo algorithm.
The more you learn about RLS and treatment, the better chance you have of controlling it. It's shocking that such a common, serious disease isn't taught in the UK.
Moderate exercise is normally beneficial for RLS e.g. something like 5-10k steps of steady walking. Anything more intense can make it worse and conversely doing very little can also leave you feeling restless and is generally not great for your health. That seems to be the case for most people although RLS can vary significantly between people so a little experimentation might be necessary.
Yes he's useless. A serum ferritin level of 18ųg is way too low. This pregnancy will reduce it even further and, unless you get levels up, your RLS will get worse and will become permanent after the birth. So do push now for an iron infusion. If the GP refuses, contact the hospital where you'll be giving birth directly and ask if they'll do an NHS irom infusion. Research paper attached.If not, definitely contact the Iron Clinic and ask if they'll accept payment by instalment.
I strongly second what SueJohnson and Jools advise. In fact, i wouldn't do anything else until ferritin levels are greatly improved as it's more than likely it's the low iron causing the worsened symptoms. I took magnesium in pregnancy at quite a high dose and it seemed to help but I can't be 100% sure it was the magnesium. (Just check with your doctor/obstetrician if you're taking more than the recommended dose).
My RLS started with pregnancy so I empathise. You definitely need an infusion.Where do you live? I hear that you can't afford an infusion privately. Could you afford £150 for a private consultation with an rls friendly neurologist or sleep specialist? You could take their advise to your gp to push for an infusion.
Thank you. I’m going to visit my family in my home country in few days and will go private there firstly and if that doesn’t help, I’ll try my luck again here with gp
I live in west London too! I travelled to Bath to see Dr Robin Fackrell at the Sulis Private Hospital. The only person I could find in London was Professor Matthew Walker at Queen Square, but his fee is £360, whereas Dr Fackrell is £265 (plus travel to Bath I suppose). I really liked Dr Fackrell, and he wrote to my GP to guide them on treatment.
I’d just add though…I had a similar issue with both my pregnancies. Absolutely brutal RLS the whole time. Back then I was taking no medications at all, and had just put up with the RLS since childhood. I was totally unprepared for the severity of symptoms during pregnancy.
But it stopped completely the day I gave birth - both times. The RLS only got really bad again during perimenopause, so my advice would be to take Sue and Jools’ advice on iron/ferritin, and then look forward to your due date.
Hi allI used to have terrible RLS but my background is a bit different.
Many years ago I was addicted to heroin and other opiates. Whenever I would want to stop the opiates and break free the only thing that would drive me mad was RLS. Every other withdrawal symptom was not a problem. A few months after withdrawal it would become ok.
I found doing walking and exercise (or anything that would tire me out helped me sleep) once my body got accumstered to my sobriety touch wood my RLS has not returned.
It was only when I would stop opiates and when in initial withdrawal phase and a few weeks beyond that is when I would suffer. An one stage (during one of my attempts to break my addiction) I was given buprenorphine by the drug clinic which I took and which I slowly tailed off to the point where I was just licking a tablet as my daily dosage . I had no RLS during that phase of my life.
Only when I would abruptly stop heroin.
I'm not a medical specialist but people have mentioned buprenorphine and it's understandable why many GP's don't prescribe it . Just keep trying until you find a GP that will Anyway I thought I'll add my contribution to the thread.
Thank you for your story, I appreciate your honesty. I’m hoping that with iron infusion my symptoms will ease. I was really excited about this pregnancy, but at the moment I feel like I’m going insane.
I was sick a lot this last 6 months and I take enzymes to help me get better faster. I noticed that my RLS was gone during the times I took the enzymes. So, I started taking 4 everyday first thing when I get up on an empty stomach and when I remember, I take another 2 or 3 in the afternoon. My RLS is mostly gone. I take Enzymatica Immune Defence that I order from Amazon. This has been an answer to prayer as my RLS had been getting worse and worse. I hope this helps you!
I definitely feel for you! My 4th pregnancy was terrible like you. I constantly had to get up and move. Warm baths help. This will sound odd but my neurologist even told me to put a bar of soap and put it under the sheets at the end of your bed. Hope either of these help.
in each of my pregnancies my RLS was x100… I didn’t sleep for 3 days once and I too wanted to cry… did cry.. out of despair and just the desire to just sleep. I took Tylenol #3, Paxil and some other medication my last trimester and it helped so much. Take iron.. here, someone with RLS should have iron greater than 50.. hot baths/ probably showers during pregnancy would ease it some?
In my history with it I’ve had to just get up and eat something to semi-distract myself from the RLS.. sometimes that worked. Nothing works 100%
I did buy a weighted blanket! It does help a lot too.
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