Tired

[Barbarax]

Hi just joined tonight, hoped to get some tips on how to manage rls which I have had since the age of fifth teen, going to start with an allergy test and hope it's food relative.

[beady3]

Wellcome Barbarax ,this site is more usefull than any doctor ,don't waste your money because it's not food that causes rls,I have had rls for 46yrs so tryed most things now on Tramodol,the very best of luck let us know. Don't go to reflexology next because that's no good x

[Barbarax in reply to beady3]

Hi beady3, thank you for your welcome,this site is great I don't feel so lonely at night now. I don't know if cutting out food types will help me ,but I know from past diets, cutting out certain food groups such as dairy or wheat etc has helped, so a allergy test may help find that group that I am most allergic to.

[Hidden]

Hi Barbara. That sounds like a long time to suffer. Have you been diagnosed? Are you on any medication? Has your serum ferritin ever been tested? Do your parents have RLS? I'm not aware of any evidence that allergies link into RLS. Iron deficiency definitely does though, and so any digestive problem which might cause difficulties with iron absorption might be involved in RLS - like celiac disease, for example. Women of course are at risk of lower iron levels in their fertile years, starting in the teenage years, especially if they have heavy periods and don't get enough iron in their diet. However, it is looking as though in some cases early iron deficiency (in childhood or even in the womb) might possibly make changes in the brain which lead to RLS and which cannot be cured by giving enough iron later. But all the research is at a very early stage.

The best, more reliable, most up to date site I have found on RLS and its causes and treatments is the Johns Hopkins RLS clinic website - if you just Google "RLS Johns Hopkins" you should find it. It is a world class RLS clinic, involved in first class research.

[Barbarax in reply to Hidden]

Hi Aspmama, my iron levels are normal, my mother had rls and I only know because she would stamp her feet when sitting, symptoms lessened after treatment for under active thyroid which I have also, other then that I am healthy.just Tired. Thank you for your help I will googleRLS John Hopkins clinic.

[Hidden in reply to Barbarax]

Hi Barbara, OK, that's very interesting. Your RLS may be inherited, so there could be a genetic or epigentic component. But if your mother was stamping her feet on sitting, it could have been "peripheral neuropathy", pins and needles when she didn't move her limbs - not RLS - I get this, and I do not have RLS. Especially is she was hypothyroid too. Hypothyroidism is also linked to low iron levels, of course. Have you joined the hypo community on Health Unlocked, it is really good, very intelligent and informed, brilliant, compassionate people?

But, on iron, what is "normal"? Did you get a figure from your doctor for serum ferritin? Every time you get blood tests, do you ask for a print out so you can see the figures?

It is very interesting that you find cutting out dairy and wheat helps. There is an overlap between hypothyroidism and celiac disease. Have you had a blood test for celiac disease, to rule it out? This is not an allergy, by the way. There is a big difference between allergy and intolerance. With the former, you will get a very rapid reaction - skin rashes, your mouth blowing up in size, all kinds of disturbing stuff. With intolerance the reaction comes more slowly - it might be 48 hours later, as bloating, or pain, or sleeplessness. Celiac disease is an intolerance, not an allergy.

There is a second, emerging condition called "gluten sensitivity". But first, tell me (if you don't mind!) if you have ever had a blood test for celiac, or have been given the figure for your serum ferritin.

[Barbarax in reply to Hidden]

Hi, Aspmama, never really look in to this before just accepted this was it, but it's got so bad now I need to find ways of easing symptoms and coping with it. Thank you your help and will be asking my GP for relent test, and no I have not had tests for celiac disease or been giving any figure for serum ferritin.what figure should I be looking for.

[Hidden in reply to Barbarax]

The celiac test is a simple blood test. Emphasise any gut problems you have to her, point out the hypo-celiac connection, which she should be aware of,

celiaccentral.org/thyroid/

eje-online.org/content/146/...

and say that you react to gluten, and you don't want to go on a gluten free diet without having a test. If she refuses, you can buy blood tests for celiac over the internet quite cheaply.

The serum ferritin is the first thing that should be tested if someone walks in with RLS symptoms - under NICE guidelines. That might already have been done, in which case ask for a print out. But you should be keeping an eye on it anyway for your hypo. If it comes back as under 50 you should take iron supplements - that's the guidelines in the UK, if you look at the Johns Hopkins site you will see that they take the ferritin levels even higher there. I would personally want to see my own ferritin level over 60 at least, and perhaps around 80. I wouldn't want it to go into the higher end of the range though. It can take months to get your ferritin up, but you will find lots of help on the hypo community of HealthUnlocked, as well as some experiences of those who have gone gluten free despite not having celiac disease itself.

Don't tell the GP your mum definitely had RLS - you don't really know, and it makes a difference to your diagnosis.

[Hidden]

Hi Barbarax, so your RLS is genetic, inherited from your mother. Most people have the inherited type of RLS, called Primary RLS. Some people find certain foods can trigger the RLS off. Things like caffeine, sugary, sugary foods, chocolate, ice cream.. weird i know. lol I have yet to find any food that triggers mine off and i have Primary RLS. Oh and alcohol can also be a trigger. That is one thing i DO avoid as i have a inkling that is a trigger for me. Did you mother have problems sleeping, having that urge to move her legs when sitting, resting and sleeping.

[Barbarax in reply to Hidden]

Hi Elisse, sugary foods caffeine, and Alcohol, don't so much trigger the RLS so much as prevent me getting to sleep quickly, I have found that I have a chance of a better night if I fall asleep within fifth teen mins. I don't think my mother knew she had RLS, I just remember her symptoms.

[Hidden in reply to Barbarax]

My father had RLS, but he also wouldnt have known he had it. I remember my father sitting on the side of the bed, thumping his legs. His name for it was the fidgits. I dont think his was as severe as mine is now. RLS does progress as we get older. You can try all the non prescription methods to see if they help. But for most of us who have reached the severe stage of RLS have found only meds for RLS will give us any relief. I see you asked what your ferritin level should read and for RLSers it needs to read 70-100. Getting iron pills from your doctor MIGHT help if your level is way down below that level. But taking iron pills does not help everyone. There is also Secondary RLS, which is where a underlying condition can be causing the RLS. That could be diabetes, pregnancy, low ferritin level and i know there are one or two more conditions which i cant recall right now. My brain doesnt function well when i have just woken up. lol

[beady3]

well Barbarax you have the gang on your side now we all try to help each other,like you say when you are awake at night you write to this site and befor long someone will reply 'we will be interested to know how you get on next week. Do you have awfull nights and keep walking about? Xx

[Barbarax in reply to beady3]

Hello Beady3, I don't remember the last time I slept through the night. I do leg stretching and end my night on a chair with my legs elevated this helps.

[Windwalker]

Good Luck with finding any real cause. Most of us have decided it is an inherited characteristic and are just finding a way to cope day to day.

[Barbarax in reply to Windwalker]

Hi windwalker, not really looking for a cause just a way coping better with out drugs, I inherited this,and one of my daughters have inherited it from me.

[beady3]

Hi Barbarax,just thought I would tell you I had food test they said to keep of dairy,well I was quite happy on goats milk and cheese and soya yogs,I can honestly say I had10 nights sleep but then it stopped and went back to usual ,I have also had acupuncture no good at all , I am now on Tramodol and I would give it 9out of 10 I hope it lasts x

[Barbarax]

Good morning all, if I have a really bad night I am left with a ache in the back of my left leg.its very wareing, for me it's worse then the night symptom.

[johannasuar]

Welcome Barbarax. I'm new to this site and I have gotten so much advice and knowledge from everyone that responded. I developed RLS about five years ago but don't know of anyone in my family with it, so although inheritance is a dead giveaway, I also heard that it CAN manifest itself out of nowhere. I don't have as much to offer but just to let you know that like others I'm on TRAMADOL and it's a life saver for me. I have been taking only 50mg before bedtime to give it time to kick in although lately, for the past three weeks, I have been needing another pill and my schedule which is working incredibly well is, one pill around 7 pm, the other pill at 1am and I sleep like a baby. Fortunately I go to bed very late so it's not a problem for me to take the 1am dose. I went to a neurologist and he put me on Gabapentin which did not work and made me gain 25 lbs in less than two months. I got off that med quickly, lost the weight and got on the TRAMADOL purely by accident. TRAMADOL is a pain killer and I was using it for something else when I realized it had calmed the RLS Completely for the night. Be careful what might be prescribed by your doctor as I have learned from thus site that some meds stop working after a while and some cause augmentation, another problem you have to be aware of. Good luck and again welcome.

[blackeyedsusie]

Hi guys... my dad suffered terribly with rls before he died, he had severe kidney failure and sitting in the same position for dialysis was awful for him. I have the same kidney disease tho not as bad but I still suffer with rls esp at night..my dad had all sorts of medication for his rls but I have found something easy and cheap to try. Whenever I went to bed with rls twinges I would get up and run freezing water over my legs.. in the summer when I would need to do this on a daily basis I would run a cold bath before bed and jump in it through the night to calm the twitching. I now run cold water over my legs before bed as a nighttime ritual and no longer have sleepless twitchy nights

[puglug1]

Try placing a soft pillow or pad under the knee portion of the affected leg. Set the pillow so that the knee is completely off the mattress. I have had good success doing this .

[beady3]

Well Barbara how did you get on with your food testing we havnt heard from you or have I missed you? X

[Barbarax in reply to beady3]

Hi,Beady3, Been to see a doctor and was ask if I was ever diagnosed with rls, thinking back no one ever said I had, I must have self diagnosed myself. Anyway I've just had full bloods,and I'm seeing a neurologist in July. Thanks to my private health care. Getting food intolerance test after. I would like to thank everyone for all tips, I've replaced coffee for water which has made a difference. Exercise early in the day and have cut out the alcohol for now lol. Will keep you posted Barbara