Rls leads to almost doctors head smas... - Restless Legs Syn...

Restless Legs Syndrome

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Rls leads to almost doctors head smashed to bits on his table

davegoldtooth12 profile image
19 Replies

So now that all the dopamine tablets have not workerd and my doctor said no to sleeping tablets becouse there addictive and no to benzose and no to opiam that I have to put up with it now ) I really wanted to smash his head up and down on his desk I said don't you understand it's effecting my whole life ) I also have tinnitus bouts of depression and a past addict experience and he just showed me to the door 😔 ) I could lose my health my marriage and job becouse this doctor has turned me away and I don't no what to do as my medical history follows me around like a bad smell my anxiety stopped me from speaking out becouse it's like he wanted me to beg for drugs just so he could shake his head to say no I cannot help you

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19 Replies

Have you tried Gabapentin or Lyrica. ?

davegoldtooth12 profile image
davegoldtooth12 in reply to

I've tried gab ape tin 😔

myview profile image
myview in reply todavegoldtooth12

I've heard that lyrica works. Given for nerve pain or benadryl. Prrsonally I use a bio magnesium but started taking an alkaline drink in the evenings for arthritis. A squeeze of lemon jce in water with 1/4 teaspn of bicarb soda (or apple cider vinegar 2-3 tspns) and found it also helped the rls and got me right off to a peaceful sleep. Mayb uric acid also promotes rls. Would not suit everybody but cheap & worth a try especially if u have osteo arthritis too. Good luck.

You are in a sh**ty position and I can't see it getting too much rosier too soon, sorry!

The negative sh*t out of the way there are lots of ways of helping the RLS. Since I don't know what drugs you've all tried I'd direct you to:

rlshelp.org

and on the left side under treatments you'll get lots of info.

If you are in the UK - then happy days as Targinact is licensed for RLS it is a mix of oxycodone with naloxone in it to stop people injecting. But to be honest with your addiction history they will tiptoe round drugs like this as no one is going to want to take responsibility for dropping that nightmare back in your lap. I would imagine if you were in there shoes you'd see it there way too.

THAT SAID, it makes little difference to use when we are leaping around the house at crazy o clock in the morning exhausted and in dire need of sleep. Ask the GP for a pain clinic referral, they can implement a proper monitored approach if needs be.

For me opiates/opioids work best and it has been a nightmare getting them prescribed - I on one hand hate the Dr's for making it so hard to get them but I also understand why they are the way they are and I begrudgingly thank them for it.

Can I suggest Iron - Gentle Iron taken on an empty stomach in hte evenign seems to be helping me loads at the mo. Someone on here was going on and on about it in every post I figured it was worth trying going by that persons passion. I have had to take it for about 3 months but this past while things have been better than they have in decades, (although still using prescribed drugs but they weren't keeping things as good as this).

There are so many things that can have a good effect we just need to keep trying them and giving them a decent chance to work.

I'm too tired to type any more but if you check my posts there should be plenty of info I've posted and others here have posted along side like Madlegs1 and nightcrawler to name the first two that popped into my head but there are many many more here with great advice.

Take care.

Madlegs1 profile image
Madlegs1

+Raffs.

That Dr Buchfurer I told you about may be able to direct you to a USA Dr who could help you. Please give him a try. See last post for my instructions.

I understand your head is not in the right place- but please check out the good advice you have already got.

Cheers.

Madlegs1 profile image
Madlegs1

Also- Gabapentin is good - but takes a few months to really kick in. You need about 900mgs ( max for rls control- more than that just gives nasty side effects for no better control) and do not take magnesium at the same time- leave about 3 hrs between it and the Gaba dose.

Hang in there.

Have you tried a mixture of epsom salts and water 50/50 by volume. Rub the oil on your legs before sleep. Works a treat for many people.

So- please consider going back to Gaba. ----------and write to that Dr Buchfurer at rlshelp.org

Cheers .

Just highlighting Dr. B.'s website to access easier. rlshelp.org He might even to be able to suggest what you can take meds wise for someone in your situation. Good luck

Jeanniebeannie profile image
Jeanniebeannie

Hi sometimes when i read pples stories i think yes there other people going thru the same hell that i do with rls. Totally controls your life and yes docs realy dont care .why .because they dont kno what its like to live with it so my sympathies with you .

What about changing your doctor? I can understand when you say you could of smashed his head .Many of us have come away from the doctors without the result that we want but when it is to do with RLS it's just not funny .It CAN effect every aspect of your life and until you suffer from this devilish disease you will never understand the impact it can have on your life. I would definitely change doctors. Very good luck to you x

rlxcden profile image
rlxcden

Yes - change your doctor. I dont want to give you false hope bu I bought two copper bracelets 3 weeks ago. since wearing them day and night I have not had a single attack of rls. worth a try.

Graham3196 profile image
Graham3196 in reply torlxcden

I haven't tried the copper bracelets. I have always dismissed them as quackery and profiteering. WE (the RLS victims of the world) need someone who doesnt profit from our cure to conduct proper statistical tests on gadgets like these to tell us the truth. Is there any reason why a bit of copper from anywhere doesn't help?

FLAME43 profile image
FLAME43

you will need to find a doctor who is willing to read up on the torture endured by RLS sufferers, this doctor sounds so hard, as well as ill informed, i really feel for you, get help fast

davegoldtooth12 profile image
davegoldtooth12

Thank you

Graham3196 profile image
Graham3196

Hi Banging on and on is something I am doing well lately. Some people with bad RLS no longer have symptoms MOST nights.

If you want to try something that works for some people then try the Monash University Fodmap diet. It was designed for IBS sufferers but appears to help RLS as well in some cases. There are plenty of mentions on this forum and also on patient.co.uk I have not conducted any statistically acceptable controlled experiments or anything fancy but I know of several people who claim it helps including me. I used to walk from whenever I tried to go to bed until about 6am and it was going to kill me. Now I still get a bit but many nights I sleeeep. I take some iron di-glycinate {45mg) and I think this helps but it isn't sufficient by itself.

Its cheap! You buy the ingredients at your supermarket so I'm not selling anything -I dont make a profit!

No drug company makes a profit

It probably doesn't augment

You have to give up on all sorts of delicious foods (that sucks) but what wouldn't you give up in return for one night's sleep?????

If you decide to do it then you have to do it strictly. One small bit of garlic (etc) would ruin two nights sleep for me.

The really restrictive diet is only for 6 to 12 weeks for most people. After that you might only have to avoid lactose or something easy.

It is NOT a healthy diet. Dont say you are eating healthy food already so it won't help you. Healthy food for us is boring and you have to be careful to get nourishment.

Read up on it and get back to me if you want more information.

There are hospital clinics in many countries set up to apply the diet for IBS people who can recomend dieticians and give advice,

google Sue Shepard and "Monash FODMAP" to see more info. Monash even sell a phone app that helps you. Others tell me its good but I can't run it on my old phone.

Banging on "Give it a try and be strict on yourself"

Good Luck

Graham

rlxcden profile image
rlxcden

Graham - I thought I would give the copper bracelets a try - why not. I dont sell them or profit from them in any way so have no ulterior motive. As i said they have worked in my case- maybe they work for some people and not others - who knows. Worth a try. Rls is a curse. Good luck.

ebn513 profile image
ebn513

I was having the same problems... Most doctors do not understand RLS and don't know what to do with it except to prescribe requip and mirapex. Both of those are horrible because in the long run they just make the condition worse. As far as I can tell you are in the UK and I am in the USA. But I see a wonderful doctor at Johns Hopkins University in Baltimore. He is a miracle worker. He is a neurologist that specializes in sleep disorders, specifically RLS. He has done research and is very knowledgeable about everything about RLS... Google him, or just Google RLS Johns Hopkins. I asked him one time if he suffered from RLS because he seems so sympathetic to everyone that did when most doctors just think it's all in your head . He said no, but that 3000 patients that he sees can't possibly be making it up! I had been taking requip for about 5 years and my legs just kept getting worse and worse. He does understand how RLS controls your life and he hates requip. He has given me a couple of alternatives that did not work but now I have found something that does work and I am getting major relief. Anyway if you can somehow manage to get to him his name is Christopher Early at Johns Hopkins University.

By the way the med I am taking now is called Horizant. I've only been taking it for a week but it is amazing. The only problem is that it is extremely expensive and insurance does not want to pay for it unless the doc can prove to them that everything else has not worked. I'm still paying a $60 a month copay for it but if it works it is worth it.

Good luck.

davegoldtooth12 profile image
davegoldtooth12 in reply toebn513

Thank you

Retren profile image
Retren

Is it possible to consult a more sympathetic physician ? Yours might be worried about his license but you need some support obviously.

welschrispy profile image
welschrispy

Hey Goldtooth! I am getting the same treatment Please see my post of today. Hang in there mate! Find yourself a specialist or get a lawyer but keep asking to be treated like a human being. I wish you all the good things in life. Don't ever give up.

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