Anemia and Undiagnosed RLS: Hi all... - Restless Legs Syn...

Restless Legs Syndrome
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Anemia and Undiagnosed RLS

Magyk
Magyk

Hi all.

(Edit: My original symptoms are not typical RLS, but some nights it triggers RLS).

I have been suffering from intermittent RLS for many years (typically in the form of cramping). These past two weeks, however, it has been non stop, every night. I saw my doctor last week and after blood tests they said I might have anemia and to take iron supplements. I have been on the iron supplaments for a week, but they say it takes up to four weeks to relieve symptoms.

I tried taking ibuprofen to help with the pains, but it seems to have no affect. I read a useful Harvard article that said patients can be prescribed with something else along with iron to manage the pain and RLS symptoms durring the four weeks, but I unfortunately was not provided with this.

The sudden twitching and cramping at night is causing sleep deprivation, pain, anxiety, depression, and fear. The worst part is that there is no guarantee that this is caused by iron. (I've also been referred to see a neurologist, but not until a week from now).

My biggest issue is that there is no current cure for the surprise attack pain, and thusly I have become terrified of it. Every time I get a pang or twitch, I find my heart and mind racing and tears come to my eyes.

Does anyone have any helpful tips with dealing with the fear of not knowing when the pain will hit and the feeling of despair?

Edit: Just wanted to put my initial blood results on iron and b12 here in case it was helpful or relevant. There was more included but the doctor specifically mentioned those two results as potential trigger issues.

"I was put on iron supplaments because my iron didnt seem very low at all. It was 33 ug/dL and the normal range given was 37 to 158. The folate test results are hard for me to read but it says that my folate is >20 ng/mL and the typical is >4.7.

I was put on b12 because I was at the lower end of the normal range (256 pg/mL which is between 232 and 1,245)."

18 Replies
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Magyk- the good news is that if you are anaemic, the horrible sensations should soon disappear as your iron and serum ferritin levels improve so these symptoms are only temporary.

Keep telling yourself that.

Until levels rise, you can take painkillers- paracetamol ( think you call it tylenol in the USA) or codeine ( for the few months until levels rise).

Also take magnesium citrate at night and check that you aren’t on any meds which exacerbate RLS like anti histamines (& cough & cold meds) or anti depressants.

Try massaging the legs, taking really hot baths and wearing compression socks.

Yoga and meditation will help the anxiety & stress (which can make the RLS worse.)

Stay strong, keep taking the iron supplements and hopefully you will see the RLS improve soon,

Magyk
Magyk in reply to Joolsg

Thanks for the support! I have never heard of paracetamol (I'm from the US), but I looked it up and saw it's a brand name for acetaminophen. Ironically, that's what I typically took because it was the only thing that ever works for my migraines, and everyone told me that for muscles I should take ibuprofen, so I switched. I am going to switch back and see if that helps.

Last night (after a horrible morning followed by a not great day), my legs would not relax, so I did try some gentle massaging, which seemed to help. I'm staying away from exercise right now, I know that's not great, but my legs are typically stiff and joints out of place durring the day following a really bad night.

I haven't tried magnesium, but I will definitely ask my doctor about it.

You could try taking vit B12 as an oral spray- must be methalcobalomin ( spelling???) 1200 dose. Until you get medical iron sorted.

You also need to check out all possible triggers- medicines, food additived etc, etc, etc. Written about often enough on this site

Good luck.

Magyk
Magyk in reply to Madlegs1

Thanks for the luck! I'm actually taking a b12 supplament prescribed by my doctor as a "catch all" "just in case" because my b12 levels were not technically low, but they were on the lower end.

I'll be sure to browse through more posts to gather some info on potential triggers. I did see some info on processed foods and added salt/sugars being a trigger.

You have my sympathy, this situation sounds horrible.

There is nothing worse than not knowing what's causing symptoms, not knowing when they're going to occur and not knowing whether they can be cured.

Once you have some definite answers about the actual cause of your symptoms and possible treatment then I'm sure you will feel better. You would feel better also if you could predict when symptoms are going to occur.

It's good that you're seeing a neurologist within a week, as they will be able to give you some answers relatively soon.

As to the cause of your symptoms, certainly, iron deficiency anaemia can cause RLS. If this is the case, it's "secondary" RLS. Treating the anaemia should then relieve the symptoms.

If you check this link you will be able to confirm if your symptoms are RLS or not. ALL the symptoms need to be present for it to be RLS

rls-uk.org/diagnosis

I was definitely diagnosed with RLS years ago so although the diagnosis checker doesn't explicitly say it, twitching is part of the syndrome. It relates to the need to move, which is irresistible.

One aspect of your symptoms does not entirely fit in with RLS i.e. the pain which you describe as "cramping". I have never experienced cramping pain from RLS although occasionally I get muscle spasm, which although similar, is actually different.

I'm sure the neurologist will be able to clarify things.

In the meantime, I understand, you are suffering. I have some suggestions that might help.

Ibuprofen is useful for pain caused by inflammation, it's therefore not particularly helpful for nerve pain or muscle pain unless there is an underlying inflammatory cause.

A more effective over the counter (OTC) painkiller would be paracetamol and codeine. Codeine is an opiate and opiates are better for nerve pain and can be used for RLS. Being OTC it's not particularly strong, but should be of some help. Since ibuprofen is different to both paracetamol and codeine, I sometimes take both. Although, I guess a doctor wouldn't recommend it taking the combination can be more effective than taking just one medicine.

You must NOT however take two medicines that both have paracetamol in them.

If you're getting the pain every night, then it might help to take a painkiller every night before the time it usually occurs, as a preventative. This might not definitely work, but should reduce any pain.

Your worst problem is your anxiety and apprehension. Not knowing whether or not you're going to get the pain and the apparent suddeness of it must be torture.

You need to deal with the anxiety then. It sounds that you are firstly suffering "anticipatory" anxiety, i.e. you are thinking about and expecting the pain to happen. It would be helpful then to avoid thinking about it. Not easy, I realise, it helps to focus your attention on something else in the moments when you do find yourself thinking about it I suggest a diaphragmatic breathing technique.

This link may be useful

blog.spire.io/2018/05/06/di...

Secondly, when the pain occurs you may suffer a kind of panic anxiety which will make you stiffen up. Stiffening up will make pain worse, especially if is muscle spasm. In this case you need to focus on relaxing your muscles. You may even do some muscular relaxation exercises anyway when you have no pain, either as a preventative or as a rehearsal for when the pain hits you.

Try this link

webmd.com/sleep-disorders/m...

I hope this helps. It might not seem.it, but waiting a week to see a neurologist isn't too long.

Magyk
Magyk in reply to Manerva

Thank you for the support and the helpful links! Sometimes I feel like it's the most horrible thing, like I want to cut my legs off, but it gives me hope (or despair depending on the mood haha) to know that other people are going through similar things and pushing through. It's inspiring.

I also appreciate your help on RLS diagnosis. I believe I am not true RLS due to the fact that on an average day, my legs will have pains and cramping whether I am standing or sitting and it will occur at any time. Usually I experience the worst in the evening and it will sometimes settle around midnight (or I will be tired enough to pass out while watching tv). The times I experience RLS like symptoms are on my really bad days when I try to go to sleep and my muscles will be twitching. This makes me feel I need to move my legs, but because of the other issues, the excess moving of my legs can sometimes make them feel worse and cramp. (I've also had periods of time where my legs would be fine (no anemia like symptoms), but have weird sensations at night and make me unable to lay down. I found that sitting up on couches until I pass put from exhaustion worked the best, but these did not cause cramping. I found that this would occur after drinking alcohol, so I stopped drinking it. It could have been related to a less severe drop in iron, though. Either way...not sleeping is awful and definitely takes a toll.

I'll definitely start taking paracetemol (acetaminophen) again. I said in an earlier reply, but I was told by doctors to take ibuprofen for muscles, but I believe they thought I just had typical aches.

I also am interested in trying the relaxation and meditation techniques. I definitely notice that the most focused on my legs I am, the more worried I get and the more difficult it is to relax. I currently try to watch TV to get my mind off it, but that doesn't always help.

I am lucky to not have to wait a long time, but when you are in pain, everything definitely seems like a lifetime. I will persevere!!

Manerva
Manerva in reply to Magyk

I appreciate it must seem like a lie time, waiting. Waiting is often the worst part.

I'm glad you will persevere.

Krissres
Krissres in reply to Magyk

I agree with Graham3196, your symptoms (cramping & pain) are not part of RLS. You may want to check out your magnesium level if you have’n done so. Most people with low level of magnesium experience cramping & muscle pain...

I have some level of RLS. And I found if I eat certain amount of chocolate or even sweets, especially at night, my RLS will get worse. But most of time my rLS doesn’t really bother me much.. I do try to work out everyday which it helps I think.

For some reason, if my arms get cold (e.g. wearing short sleeves under a ceiling fan), then I can experience RLS in my arms at night 😖😖.

Hope you find solutions for your crampin n pain soon..

Try taking magnesium - Malate glycinate or citrate or a combo or even a magnesium spray. (Not oxide) up to 350mg. May help restless legs and sleep but also great for migraines. Stopped all mine completely.

I'm not sure that your description fits RLS. Cramps are not part of RLS. The basic RLS symptom is that your legs (typically) have "crawling " sensations and a desire to move and kick that is only relieved by getting out of bed and walking around for 5 minutes or 5 hours. The symptoms seem to vary quite a bit between people and descriptions of symptoms can be different depending on your history.

If you are in the States then there are several specialist for RLS. One in California and one at Johns Hopkins in Boston I think.

The good news is that if you have anemia then there is a very good chance that RLS can be cured almost overnight by fixing the anemia. Oral supplements are just a way to extend your torture. Explain to your doctor that you need an iron infusion to raise your ferritin level to about 350. This does not guarantee a fix but it's the quickest way to know if your anemia is causing the RLS. The relief available from oral supplements depends on many things but you might be on supplements for a year and get no relief. My daughter was anemic with RLS. She had an iron infusion and slept soundly the same night and has slept well for the last 12 months with no RLS. I will send some notes on this - they are too big to include here.

The other thing is diet. Many people find that what they eat triggers their RLS. The best way to find if you have any triggers to avoid is to follow an exclusion diet for a few months and see what happens. If the RLS goes away then you can start reintroducing real food according to a well designed plan and that might determine all the foods that are your personal triggers. You just avoid these foods forever and, if your lucky, your RLS will be gone for the same length of time. As with most RLS cures and reliefs what works for one doesn't work for everyone but you have to try it to find out.

For the cramps I have found that magnesium diglycinate is best for me. I take two tablets (amino acid chelate 500g - magnesium diglycinate , Some other form of magnesium chelate 750 grm Total equivalent Magnesium 200mg If I remember to take these I usually have no cramps, if I forget I usually have painful cramps so it seems to work. The other possibility is a glass of very strong solution of the sports drink "Staminade" made up from powder. This works for my wife if she has a cramp.

I will send some info by private message. I hope some of it helps.

Cheers

Graham

Just an FYY....Johns Hopkins is in Baltimore, not Boston!

Magyk
Magyk in reply to marsha2306

I live near Boston, so that would have been awesome if it is RLS and they were in Boston!

Thank you for all of the information (private message included). My current game plan is to try the iron and b12 supplaments, as well as a visit to the neurologist. If that doesn't help and nothing new is found, I will definitely be pushing my doctors into helping me further. The diet option looks like it might be useful to try, certainly not harmful. I'm also wondering if weight could be a factor. As of now I have issues during the day as well (not RLS) and find that my legs have become very tight and hard to walk with. Like waking up stiff the next morning from a workout...but also with strangely tight feeling feet. I'm hoping if I try walking more through the day and pushing through the pain that it will help me at night. (I used to be an avid walker/hiker, but the leg issues have me being very inactive).

I'm hesitant to try magnesium as has been suggested because in my blood test my magnesium was 2.0 mg/dL (it shows the normal range between 1.7 and 2.6).

I was put on iron supplaments (ferrous sulfate 325mg one tablet per day) because my iron didnt seem very low at all. It was 33 ug/dL and the normal range given was 37 to 158. The folate test results are hard for me to read but it says that my folate is >20 ng/mL and the typical is >4.7.

I was also told to pick up some b12 over counter supplaments because I was at the lower end of the normal range (256 pg/mL which is between 232 and 1,245).

I will update this thread with a post with any information or updates I get in the future. Even if it is not true RLS, it might be helpful to someone.

I read about low iron affecting RLS so I bought iron tabs and after 2 weeks my symptoms have already improved!

Magyk
Magyk in reply to Graciegirl8

That's awesome, I'm glad it helped you! Did you have true RLS symptoms or did you also experience cramping and daytime issues? If I have anemia with a secondary RLS, it's hard to tell because most signs of anemia are also signs of sleep deprivation. The only indication of anemia I had was that when I visited the hospital (before the iron and my primary care visit) they took my blood pressure and the machine gave me a bruise even though it was no tighter than any other machine. I don't typically bruise easily and wondered if maybe my iron levels fluctuate, which would explain why some days I had felt fine and others it was awful. That is all anemia related and not RLS, but I figured I would ask! I haven't had much luck finding other who have the same maninfestation of symptoms as me...which is why I went looking for RLS information and assistance. It was the closest I could find.

My two week mark on supplaments will be June 7th. I've been pretty impatient, but it's dificult going from someone who used to be active to someone who has trouble walking and sleeping. In my "spare time", or rather time I felt panicked or couldn't sleep, I looked up a lot of medical information and also found this forum).

Graciegirl8
Graciegirl8 in reply to Magyk

I have typical rls symptoms, dont have cramping just constant aggravation, aches,my husband has leg cramps, drinks tonic water with quinine, helps him a lot, does not help rls.

Go to rlshelp.org and click on the Treatment Page. It will help you learn what medications make rls worse.

Magyk
Magyk in reply to marsha2306

Thank you for the info! The only full time medication I have been on is Apri (desogestrel and ethinyl estradio) which is a birth control pill I've been on for around 13 years).

Keep being positive my dear . I had a bad attack of RLS last night even though I put my Balneum cream on before I went to bed. & a few hours later I had a burning sensation & my feet were moving like crazy So I had to get up & massage some more in & once Ive done that I went back to bed & slept through the night

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