This was a tough one: Last night when... - Restless Legs Syn...

Restless Legs Syndrome

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This was a tough one

Backtobasics95 profile image
23 Replies

Last night when smoking cannabis I didn't blow the smoke away the right way, and accidentally filled the laundry with the smell. I was doing it out the back, and after finishing up I went into the bathroom to have a shower. My mum went into the laundry and immediately thought it was my other brother, who is kind've the problem child and he's in the process of moving out. He had been covering me the past month but this time told her it was me. I was overhearing in the bathroom and was shell-shocked. I'm the type of guy who has stayed away from drugs my whole life, and rarely drink. I'm only doing it for RLS obviously. I guess you'd call most of my family really sensitive. My mum couldn't believe it, and I hated that she had to find out. So I walked to her room with my tail between her legs and told her everything. Pretty much everything. I have RLS, I've been smoking cannabis for relief, I did a sleep test last year for a diagnosis. I also told her I am extremely lucky and have found a way of controlling it with the low fodmap diet. I told her I dodged a bullet and was one of the lucky few. I don't think she really knows how bad rls is. She says she hears it on the radio all the time, and you go to your doctor not the illegal drugs. Nearly laughed at that. I told her I only need to do it for another two weeks before the diet is working 100%. I don't really know how she feels. Right now she's preparing for work tomorrow. I don't know why but I just find my condition a little embarrassing. My mum and step dad didn't find it embarrassing at all, they thought I made them find out the hard way, which I agree with. So yeah, last night lying in my bed after that conversation was the lowest moment of my life. I know things are going to get way better in the future, but for now I just feel terrible. I typed this message out last night, and it was really emotional because that's one of the side effects of being high, you get really emotional. Unfortunately I swiped upwards too fast and the screen automatically refreshed, so that was a waste of time and effort. I hope this is enough. Have no idea if this sounds emotional or casual, and I'm actually pretty embarrassed to post this, but I'm going to do it anyway.

Cheers

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Backtobasics95
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23 Replies
AnneJende profile image
AnneJende

I don't know how old you are but as a mom of 2 adult children in their 20's I would appreciate first the fact that you told the truth. But I think you may have to educate them on the disease. People just don't understand how debilitating it can be. Let them read our suffering, maybe take them with you to the doctor.

I imagine most of us have felt the embarrassment of telling people we have the disease. Only my immediate family knows and I'm pretty sure my 27 year old son doesn't believe it's real.

Hang in there. Sound off here whenever you need a venting! There are a lot of good listeners out there just pacing the floors!

Backtobasics95 profile image
Backtobasics95 in reply to AnneJende

Thank you anne. I know that was a huge mistake not telling her, probably the worst thing I've ever done. But when she has time I will tell her about the disease and how lucky I am to have found a way out.

Joolsg profile image
Joolsg

As a mother of 2 children in their twenties, I always want them to tell me the truth, no matter what. Maybe your Mum is in shock now, but as Annejende says, show her the posts on this site and she will see how real the suffering is for people with this horrible disease. Tell her that it is more debilitating than Multiple Sclerosis ( believe me, I know, as I have both) and the drugs available from the doctor are a lot more serious than cannabis. It won't be long before cannabis is legal in most countries ( Canada has just started to legalise it). You have done everything you can do deal with it drug free by following your strict diet, so big hug and pat on the back to you! She'll be proud of you when you explain all this and show her this site.

Don't be embarrassed ever to say you have this disease. It is very real. Maybe buy one of the books by Dr Buchfuhrer on the subject from Amazon for her to read.

Sleep well and keep doing what you are doing. It's working.

Well done

Backtobasics95 profile image
Backtobasics95 in reply to Joolsg

Thank you jools. How are you going with the diet? I know it takes a long time for long time rls sufferers, think it's 3 months, but are you noticing anything yet? I really hope you have bought and downloaded the low fodmap app, it is something I use every day and I'm very reliant on it. Also, I noticed on another post that you've given up tea. You can drink peppermint tea, it has 0 caffeine and it is very safe fodmap-wise. Also, thank you a lot for those words, means a lot :))

Joolsg profile image
Joolsg in reply to Backtobasics95

I'm still on the low fodmaps diet and I drink mainly hot water but I do drink peppermint or fresh mint tea when having "coffee" with friends. The diet isn't making any difference for me, but I know that's because my RLS is caused by either scarring in my brain & spinal cord or hormones. I'm still going to keep on the diet because I'm a control freak & it makes me feel in control of at least a small part of my life! The App is useful for people eating out a lot or who buy packaged food. I can't stress how simple & boring my diet is. I only buy fresh vegetables & fruit and organic chicken & fish. I only eat the seeds & nuts allowed on the fodmaps diet and I've bought the cook book by the Monash University team.I don't use any spices,salt or pepper so I can't make any mistakes.It may take a year before I notice any change, if at all.

Stay positive. Cannabis and Kratom are great helps to a lot of RLS sufferers. Tell your mum that a lot of very "conservative" old biddies on this site have used it for relief ( I'm one of them when going through ropinirole withdrawal) and it's illegal here in the UK. I would happily have been arrested! It did help enormously until it gave me panic attacks ( THC content too high). If cannabis were legalised, like in a lot of US states, we could get a specific, organic strain to help RLS. No criminals involved, pure, organic cannabis without any crap included to bulk it up, no skunk to make us dependent & psychotic. The Government could use the extra tax billions to save the NHS in the UK.

There is a general election coming up and one party, the Liberal Democrats, have said they will legalise cannabis in their manifesto. Tell your mum that news. It's being taken seriously over here, even by mainstream political parties.

Really hope she understands how badly you've been affected by RLS and how sensible you have been coming on here to get help and following your diet.

Big hugs from London.

Backtobasics95 profile image
Backtobasics95 in reply to Joolsg

Thank you jools, I appreciate that. I don't know how long you intend to stay on the diet, but at least you are fully committed which is very important. Yes that is big news about the political group, you must be telling all your friends to support them. Thank you

Bkc1777 profile image
Bkc1777

Hey,

Well done for biting the bullet. You have done the right thing! She is probably shocked so please give her a time. Soon she will understand. In the meantime educate her about RLS like Jools said.

I am so happy lowmap diet is working for you and you got your RLS under control. We are the lucky ones.

And don't be embarrassed! I was constantly emotional when on pramipexole. We are here to help not judge!

Hope feeling a bit better?

B.

I am really moved by your post. I hope your mother can find her way to understanding your condition and the lengths you have been forced to go to to find relief. You have been exceptionally brave and resilient - trying unconventional treatments and a diet which requires a lot of discipline. And during this difficult process you have protected your mother and step-father from having to worry about you. I too have grown up children - in their early 20s - and I doubt they would hesitate to burden me if they were suffering from something as debilitating as RLS. Of course, I would want to know but at the end of the day there is nothing anyone else can do and it is an additional worry for a parent. Your mother has every reason to be proud of you and supportive.

That said, I still get grief from my own mother who clearly believes that I exaggerate my symptoms and the difficulty of finding a viable treatment. Mothers can be difficult - it is not always their fault but it is also possible to be too lenient with them.

I don't know if it would help at all but if you go onto the forum of the US RLS website (rls.org) you will find many, if not most, are using cannabis for their RLS - most are in the 'silver' years and are definitely not recreational users - it is legal in the US. In fact a member of this forum posted yesterday to say she had a prescription from her doctor for cannabis.

You could also talk your mother through the conventional treatments: the dopamine agonists, which have caused such torment for so many after augmentation; the anti-convulsants which are often ineffective and have unpleasant side effects and then the fairly serious opioids/opiates. Cannabis is a much more benign substance than those.

For myself, I started using cannabis last year for my RLS even though it is illegal where I live. It is the ONLY thing that helps with my RLS insomnia. I am a lawyer married to a lawyer and in every other respect live a conventional middle class life style. My children think it is a very funny reversal of the roles.

Please don't beat yourself up - you acted for the best as it seemed at the time - how can that be wrong?

minuts profile image
minuts

I have video tape of my physical symtoms, pretty shocking even when I review them. In an attempt to record a history and pattern while trying assorted rx from Dr.'s over the past 8yrs. Its as I explained in a previous post . Try describing a horrible carwreck you witnessed to someone and in one ear out the other but show them a video of the same and the impact will be much differant. I wonder to all posters out there if you think a video catalog is A. out there already B. Helpful to our situation, awareness etc. I would certaianly share mine if I thought it would help. Have shown it to my Dr.

minuts profile image
minuts

Also see my other post regarding hemp. Be strong, fight the good fight.

My story is sort in reverse. My son when younger i knew he was using cannabis, the times i had the chat with him, on taking drugs, but in one ear out the other. Now he is an adult he doesnt do that anymore. Well after knowing that cannabis can help with RLS symptoms and after being without meds for 14 months cause they were all making me ill. ME, being so anti illegal drugs, decided to try the cannabis. But i thought if my son found out, after all my chats with him about illegal drugs taking he would be saying oh yeah, its alright for you but it wasnt for me.! Anyway, the cannabis didnt help my RLS, probably because not the right type. BUT my son DID find out, and he thought it was funny after him remembering back in his youth on me lecturing him. At least your mum wasnt shocked, but that you hadnt told her was the problem Hopefully you will feel better about it once the cannabis effect has worn off.

Backtobasics95 profile image
Backtobasics95

Really appreciate all the support. I am in a scramble trying to finish assignments and study for exams right now, so my life is gonna be a huge mess for the next month. But of course I plan on talking to my parents about the condition, and hopefully by the time I move out later in the year everything is ok. I've started donating some money to rls research each week, but not sure what else I can do? I'm also going to contact some rls researchers and tell them about the low fodmap diet, maybe they find something out of it and eventually a diet for RLS is designed. I'm not sure. Once again, really really appreciate the support.

R16728 profile image
R16728

Don't forget to mention to your mother that marijuana is legal in many places and certainly legal for medicinal purposes.

Your mother is right to be worried with you taking such a potentially damaging drug like Mirapexin that can cause psychosis and compulsion disorders and destroy lives......Oh, she doesn't like the cannabis!

OK joking aside I make a serious point. The drugs - and that is what they are make no mistake you can call it medication or your pills or whatever they are drugs - that the Dr prescribes are much more toxic and dangerous than cannabis. While taking Mirapexin my thinking was so disturbed that some 8 years later I still shiver when I remember back to driving down the road with a repeating thought to drive in front of the next lorry and kill myself! Thankfully I knew it was the drugs and was able to resist the thoughts but had to stop as they were dementing me. I have been told by my GP that he knows people who gambled and shagged away their lives on these drugs!

Unfortunately your mother is the result of years of negative propaganda demonising the once ubiquitous medicinal plant. I once believed that cannabis was a bad drug that led people into the horrors of heroin addiction and would have had no problem grassing them up to the authorities! (no pun intended :) ). I was able to see it as the useful life enhancing drug that can be very beneficial if used correctly. It has made some terrible times for me bearable.

She may be terrified you are going to screw up your exams thinking it will make you lazy and unproductive, you need to explain the RLS and resulting insomnia, pain, etc is much more debilitating and more likely to cause you problems with your exams. I completed a degree p/t and every assignment and all study was done while using cannabis and I managed a few 2.1'a in there - I would not have been able to sit to read had I not used it!

If your mum is open to it there is a plethora of research advocating its efficacy across a wide spectrum of complaints and how it is not as terrible as has been portrayed. It is highly likely she drinks alcohol and would tolerate you using alcohol yet it is a much more harmful drug was discovered by Prof Nutt et al 2010:

ias.org.uk/uploads/pdf/News...

You could always try educating her about how a racist Harry Anslinger he of prohibition infamy turned his attention to cannabis in order to keep his job after alcohol was legalised again:

huffingtonpost.com/the-infl...

She may need educating on how bad RLS is so have her check through here, maybe if she sees how bad things can be she will be happy for you to skip that little joy!! By understanding her fears you will be better able to challenge them in a safe and supportive way.

Good luck and I hope you get through to her, take care.

Backtobasics95 profile image
Backtobasics95 in reply to

Hi raffy, sorry for the late reply. Yeah I am trying to explain but it's really hard. I need someone else to explain to her how bad this disease is. My grades have been terrible this semester, she thinks I'm a slacker and I'm giving up. Very tough situation....

Kaarina profile image
KaarinaAdministrator in reply to Backtobasics95

Hi Backtobasics95, would these two videos by Kate and Imogen go anywhere near helping your mum begin to understand how RLS can affect one's life: rls-uk.org/video-stories

Backtobasics95 profile image
Backtobasics95 in reply to Kaarina

Thank you Kaarina, I will show her these

Might be worth asking her if this Dr prescribed medications side-effects are OK:

ncbi.nlm.nih.gov/pubmed/236...

I don't think people realise the severity of the drugs prescribed. I have seen people left catatonic from anti-psychotic medication. I ended up in hospital due to a reaction to an antibiotic and I have seen chemo drugs burn the veins out of people. Drugs that cause psychosis as they try to heal acne!

I wont mention radioactive scans that are so toxic children couldn't sit on your lap because they would be irradiated! Like the research chemicals -Legal/prescribed doesn't mean safe.

It may be a long struggle but openness and honest is the best policy.

Backtobasics95 profile image
Backtobasics95

Hi all, it's been a while since I last posted on here. I've been busy. Been trying to study for my exams but it is just so damn hard to concentrate. The parents weren't happy when I told them I was struggling, and my exam results probably wouldn't be great. I am trying to explain everything but it's just so difficult. If someone here could email my mother for me, I would be super super thank full. Just explain to her how bad rls is and how it has affected your life if you could. I don't know what else to do. I've always taken pride in achieving good grades, but since my RLS I've developed a bad reputation amongst the family academics-wise. Really just need some help

in reply to Backtobasics95

Leave it with me mate I'll get my head around a decent letter to your mum. one parent to another and from one sufferer for another.

You are her kid and sorry but no matter what you say she is unlikely to hear it. Can you show her my posts her in preparation for a letter?

Backtobasics95 profile image
Backtobasics95 in reply to

Thank you thank you raffs. I will try showing her your posts but things are intense now. I thought I could study full time, but I just can't, and now I did not drop out in time so I will have to pay for a semester of wasted study. In a deep hole here

in reply to Backtobasics95

Hard spot to be in PM sent stay strong.

Hi btob,

If you like, I would be happy also to email your mother. I am a professional as well as a mother of students myself - and also an RLS sufferer and have been familiar with your helpful and generous posts over the last few months on here. Send me a pm if you would like.

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