Need advice, please

[Kazmataz91]

Hi, I have just joined this forum to try and get some answers as I am in a bit of a state - I have currently been awake for about 40 hours due to a sensation in my legs I can't describe.

I am 26 and this has been going on for about a year but it has now become unbearable. I have been to my doctor 3 times but have just been told to have a bath before bed, avoid caffine etc. The usual. I have tried to keep a regular sleep routine for about 3 months to no avail and just stumbled across RLS about 4am after never hearing of it before and reading through the posts made lots of sense to me.

My legs are in a sort of pain, like a pressure or the sensation of the start of cramp. It goes all the way from my hip to my shin and I can only obtain relief when I am moving or jerking my legs. I work in retail and I am on my feet for 10 hours a day so I feel constantly exhausted by not being able to rest. Painkillers, baths, Deep Heat, Deep Freeze Ibuprofen Gel and an array of other remedies aren't doing diddly squat.

I know this is a bit of a ramble but I am desperate to hear if this sounds familiar to anyone on the forum? I am at a complete loss and my doctor doesn't seem to be providing any answers.

Thanks,

K x

[Hidden]

Welcome to the site, you will get the best info available here so rest assured things are going to get better.

First off are you on ANY drugs from your GP - many cause problems as do many OTC ones. If you are taking some OTC sleep aids they are antihistamines and can send the RLS through the roof.

Also there are a wide variety of drugs that can be used to treat RLS see rlshelp.org and rls-uk.org to see a list of treatments available.

Your Iron could be low and that could be causing your problems/making it worse.

A bit of history will help us help you better.

[Kazmataz91 in reply to Hidden]

Thank you so much for your prompt reply, I am in a bit of distress.

I am on no medication at all. I take OTC antihistamines as I am allergic to dust but it is very infrequent, the last one was probably about 3 or 4 weeks ago.

My Mum has numerous health issues including MS, thyroid issues, COPD, arthritis and anemia. I am not sure of the hereditary implications but I may just be grasping at straws.

Does this sound like RLS?

K x

[Kaarina Administrator in reply to Kazmataz91]

Hi Kazmataz

Antihistamines are listed as medications to avoid for most people suffering with RLS. See Medications to Avoid here: rls-uk.org/treatment/

See here for a diagnosis/symptom checker for RLS: rls-uk.org/diagnosis/

Unfortunately, not too many doctors know much about RLS. This forum is great for finding information as is the website rls-uk.org and then making a doctors appointment. You will by then know more than your doctor about RLS.

Look after yourself.

[Kazmataz91 in reply to Kaarina]

Oh, dear 😔 I had no idea about the antihistamines! I have quite a few allergies so it was always my go-to.

Thank you so much for your links. I have to say, this is a bit overwhelming as I literally heard about RLS 12 hours ago. I genuinely thought it was to do with air pressure and weather changes.

There really doesn't seen to be much information around at all - is this quite a new thing?

K x

[Kaarina Administrator in reply to Kazmataz91]

Hi Kaz,

No. This is not a new thing.

LOL I bet you wished you had not asked now.

(Taken from Wikipedia)

The first known medical description of RLS was by Sir Thomas Willis in 1672.[77] Willis emphasized the sleep disruption and limb movements experienced by people with RLS. Initially published in Latin (De Anima Brutorum, 1672) but later translated to English (The London Practice of Physick, 1685), Willis wrote:

“ Wherefore to some, when being abed they betake themselves to sleep, presently in the arms and legs, leapings and contractions on the tendons, and so great a restlessness and tossings of other members ensue, that the diseased are no more able to sleep, than if they were in a place of the greatest torture. ”

The term "fidgets in the legs" has also been used as early as the early nineteenth century.[78]

However, it was not until almost three centuries after Willis, in 1945, that Karl-Axel Ekbom (1907–1977) provided a detailed and comprehensive report of this condition in his doctoral thesis, Restless legs: clinical study of hitherto overlooked disease. Ekbom coined the term "restless legs" and continued work on this disorder throughout his career. He described the essential diagnostic symptoms, differential diagnosis from other conditions, prevalence, relation to anemia, and common occurrence during pregnancy.

Ekbom's work was largely ignored until it was rediscovered by Arthur S. Walters and Wayne A. Hening in the 1980s. Subsequent landmark publications include 1995 and 2003 papers, which revised and updated the diagnostic criteria.

[Kazmataz91 in reply to Kaarina]

Thank you, Kaarina. That surprisingly made me feel better! 😂

I have a feeling on my next day off I am going to be headed into my doctor with a tonne of information 😂

K x

[Kaarina Administrator in reply to Kazmataz91]

Your doctor, Kaz, is not going to know what has hit him/her when you walk in to your next appointment. Methinks you had best book a double appointment.

Keep calm, knowledge is power.

[Kazmataz91 in reply to Kaarina]

Absolutely, Kaarina! A wee PowerPoint presentation may be in order here...😂

K x

[Joolsg in reply to Kaarina]

That is so brilliant Kaarina. I love the description by Willis- it is indeed torture. I'll be copying and pasting that in future emails to my GP!!!

[Kazmataz91 in reply to Joolsg]

Agreed! 💯💯💯

K x

[Pippins2 in reply to Kazmataz91]

Kaz safe antihistamines which won't worse restless legs are Claritin / Clarytin and Allegra. Whilst you get to see your GP try Co Codamol bought over the counter. It's the Codeinethat helps although the amount is tiny in overthe counter it is better than nothing. Anadin and Paracetamol won't help x

[Kazmataz91 in reply to Pippins2]

Thank you so much, Pippins. That advice could be invaluable to me ❤

I have been taking Benadryl for my allergies for years and Anadin has always been my go to for pain.

I guess the crux of the situation really - is there a cure for this? I can't seem to find much anywhere about a definite solution.

K x

[Pippins2 in reply to Kazmataz91]

Which country are you in? Benadryl is a definite no no for RLS will send them nuts. No cure but lots of treatments x

[Kazmataz91 in reply to Pippins2]

Scotland - hence why I thought air pressure changes and rain were a trigger! 😅😅

K x

[robroberts-uk in reply to Kazmataz91]

I know how you feel i always blamed chocolate OF WHICH I LOVE now im off to the docs lol

[Kazmataz91 in reply to robroberts-uk]

Oh no! Not chocolate! 😲😲😲

K x

[Hidden in reply to Kazmataz91]

Check the antihistimine that its not making things worse and cut out caffeine and alcohol too as they are known to make RLS worse.

I would consider gathering some information form the sites I mentioned and if you are in the UK you can explain the NICE guidelines:

cks.nice.org.uk/restless-le...

and take it to the Dr that wont do anything and ask to be changed to a Dr that will! You will find the ignorance among Drs regarding RLS is insulting, many give drugs that make things worse or tell you to ignore it!

There are genetic links for RLS, I can't remember the names of the genes but there are about 3 or 4 directly linked and RLS can be hereditary too.

Good luck.

[Kazmataz91 in reply to Hidden]

Thank you so much for your advice, I really thought I must be making it up!

Surely the fact that there are forums like this would encourage medical professionals to look into it more? When I told my doctor about it his literal words were, "Well, what do you want me to do about it?". Have not been back since, made me feel 2 feet tall.

I will ask my Mum if there is anyone in the family with similar issues.

K x

[Hidden in reply to Kazmataz91]

Kaz what pain killers have you tried .? RLS can be genetic, means have inherited the gene from a parent, and RLS usually starts on earlier in life if genetic. As the others have said the antihistamine will not be helping your symptoms, so you need to find some thing else for your allergy. Do, you have the urge to move your legs..? As in a urge that you cant resist and have to move your legs. That is one of the most important part to being diagnosed with RLS. I see that Kaarina has the link for the criteria for RLS. Altho it says ,... need to move. It is also a urge to move like i have said.

[Kazmataz91 in reply to Hidden]

Hi, Elisse.

Just OTC medication - usually Anadin Extra as the caffine makes the paracetemol react quicker (I now realise that could be part of the problem in which case I am now at a loss 😣)

That is a spot on explanation. I thought it was like an itch and if I ignored it then it would go away. If I focus on not moving it becomes very painful and they jerk almost of their own volition! It used to only be at night but now there is no rhyme or reason.

K x

[Joolsg in reply to Kazmataz91]

That is absolutely right Kaz. IF you consciously try not to move your legs they do jerk of their own volition. I used to do that to show my hubby what would happen if I stopped wriggling my legs together to get relief. I could literally kick tables over with the jerks..

[Kazmataz91 in reply to Joolsg]

It is so nice to hear I am not alone, Jools. Trying to describe it to someone who has not experienced it is nearly impossible! Especially when I am not sure myself!

K x

[Joolsg in reply to Kazmataz91]

I know. When I first had it during second pregnancy, I couldn't even be sure where the strange feelings were coming form. Very weird at first.

[Joolsg in reply to Kazmataz91]

I have severe RLS and I also have MS, and my daughter is currently awaiting MRI scan results to see if she has MS. She also complains of fidgety legs, which are mild at the moment, so I really hope she doesn't get full blown severe RLS. Weirdly, I would not be as upset if she's diagnosed with MS than with severe RLS. Severe RLS is definitely, definitely worse than any of the MS attacks I've had over the years ( and I've had loads) and there are now brilliant, life changing treatments for MS which, if taken early enough, stop the serious disability. Treatments for severe RLS are not as effective, although a lot of people report on here that they are controlling their RLS and getting good nights' sleep. There are a lot of meds available and everyone responds differently. What works for one person doesn't necessarily work for another.

A few people on here manage to get relief from diet alone or taking ferrous bisglycinate, most others have to use meds.

As Raffs says above, get your bloods done to check for serum ferritin levels and if they're below 75 take ferrous bisglycinate. Low iron can cause RLS.

Your head will be spinning with all this info but direct your GP to the section of the RLS uk website for professionals.

Jools

[Kazmataz91 in reply to Joolsg]

Oh no! 😔 I really hope she is ok, Jools.

Thank you so much for all your advice, I am not going to pretend much of that made sense 😂 but I am taking notes of everything to take to my GP.

K x

[Kaarina Administrator]

Hi again Kaz

Important News!

There is an anticipated Channel 5 programme on RLS that will be aired in the U.K. on Tuesday, 4th April at 10pm. It is called RLS Desperate For Help. (it will also be available on catch-up if you miss it).

[Kazmataz91 in reply to Kaarina]

Wow, that may clear up many questions!

Thank you so much for letting me know!

K x

[Pippins2]

Kaz I have sent you a private message

[Mikeca]

Hi, my restless legs were caused by acute ibs. Doc gave me fodmap food restricted diet. It depletes I think the gut bacteria. Been on it for 12 weeks. After 7 started drinking kambucha with ginger, and milk kefir to give gut something to help with digestion. Had 27 years of rls, I have been free of rls for 3 weeks so far and feel better than I have been for years. For fodmap list of food try Monash app. It is used by NHS England for ibs.

[Kazmataz91 in reply to Mikeca]

I have never had a problem with IBS or similar conditions but I don't see any reason why trying some of these things out will do any harm! Thank you so much for the information.

PS; Very happy to hear you have found some relief, long may it continue! 👌

K x

[Mikeca in reply to Kazmataz91]

Hello. Kambucha and kefir are considered high fodmap so are in red zone. But I was able to drink with no ibs symptoms. Hope all goes well for you.

[Hidden in reply to Mikeca]

Hi Mikeca, glad you are doing well. Do you have more IBS-C or IBS-D? Did your RLS seem connected to a bad IBS night? What time do you finish eating for the night. For example, I might have rice flour crackers as late as midnight whereas I have an aunt who puts nothing in her mouth after 6pm.

[SuperMNew]

Many of us on this blog know exactly what you are talking about. Most doctors prescribe medications that may work for a while, but they eventually have to be increased in strength to render relief, or they stop working and the poor patient hits a brick wall! Please avoid all the prescription medication if you can, and do some research on the natural dopamine bean called Mucuna Pruriens. It has been used for centuries to treat Parkinson's Disease but works very well for restless legs to stop the sensation you are feeling. Doctors who do not have experience with restless legs do not understand what you are going through. But many of us here know exactly what you are going through. And it is misery!! Here is a link to get pure, pharmaceutical grade 100% mucuna pruriens. If you choose to use mucuna, please read the many posts in this blog about mucuna. This pure mucuna does not have fillers, and therefore, it has no taste. The information you read on this blog will help you understand what to do. You must go slowly to see the amount you need to control your legs. There are a number of people here that have found relief with it. My experience is that with 3/4 tsp. of the powder dissolved in water, taken on an empty stomach, gives me four to five hours of relief and good sleep. I get up then and repeat this dose for another 4-5 hours relief and sleep. This amount is all I can tolerate at one time, but this amount may be too much for you, though, so you must start slowly to see what works. There is also an excellent book on Mucuna Pruriens written by Dr. Rafael Gonzalez Maldonado entitled NATURAL REMEDIES IN PARKINSONS DISEASE. Mucuna has been time tested, and I've taken it for 16 months with consistent relief every time. Taking too much, though, may cause you to vomit. But that's the only side affect I've found. If you take mucuna with food on your stomach, it may not work at all. Here is the link:

nutrivitashop.com/products/...

Do some research. You alone are responsible for YOU. No doctor will care about you as much as you yourself care.

God bless you!

[Kazmataz91 in reply to SuperMNew]

Thank you so much for your advice! K will look into it right now.

K x

[hayley666]

try patches of doctor ROTIGOTINE been on them 2 weeks on 2mg now and had 3 good nights

[Kazmataz91 in reply to hayley666]

I will mention that to him tomorrow, thank you!

K x