Exhausted and fed up

[Linda_pink]

Another night exhausted and trying to sleep but my legs have other ideas. Withdrawing off amitriptyline which was given as my restless legs are accompanied by pain. Didn't realise at the time it would eventually make it so much worse. Doc says I can't be prescribed anything else til off the amitriptyline. Partner is now suggesting separate beds which I don't want but appreciate it is affecting his sleep too. He says that even when i am asleep my legs aren't. So fed up

[Madlegs1]

For the sake of your relationship get into that other bed. Even put a mattress on the floor and go to sleep on that. Visiting rights make life much more exciting!😆

Sad that you have to wait to get off the ami-- have you a strategy for then. If you are in pain there are good options. Gabapentin , tramadol and natural opiates ( Oxycontin ) are all good for pain relief and rls control. They do have side effects depending on each person's reaction - and everyone is different.

You will need to EMPHASISE how much pain you are in , to persuade the medicos to prescribe them. So ham it up well.

Meanwhile- some people get a bit of relief from paracetamol or a sleeping tablet- ifcyou have any to hand.

Magnesium tablets can also help some people to get to sleep. 400mg.

I hope you get over this little bump in your road of life.

Cheers.

[Hidden in reply to Madlegs1]

Hi madlegs you seem very knowledgeable on here . I had 7 good years on cabergoline and then another 7 on pramipexole.legs restless again , no pain . Have good night's and bad nights. Was thinking augmentation but then I split my dose to 3 times a day and brilliant ..but not for long . I take a 0.088 mg at 8am and 4pm and then at 8pm I take a 0.18mg of pramipexole. My gp says I'm on max dose but I'm not convinced ? I know it's a complicated dose to fathom . Have had rls 30 yrs . Ferritin levels over 100. B12 bit low so taking that now. Gp useless , had private neurologist booked but saw him before and pretty clueless about rls. Not sure what to try next ??? Help !!

[Sunshine458 in reply to Hidden]

I could have written almost the same words that you wrote!! I am ready to try ANYTHING ... I am MISERABLE ... I can have maybe one decent night and the two horrible nights and now it's DAYS too!! I cannot take this ... I am 66 years old and I am not suicidal but I am sick and tired of feeling crippled inside with jerking, twitching, kicking and just worn out from no quality sleep!! I feel like everything I try only lasts for a little while and the side effects out weigh the time, money and stress of even trying something else. I am ready to give it up I have lived like this way over 20+ years...

[Hidden in reply to Sunshine458]

Oh it's just vile isn't it . I'm so tired this morning .friend gave me a massage brush so I've been doing that this morning which works for a while . Take care

[Linda_pink in reply to Sunshine458]

Bless you. It is such a horrible situation and the medical profession don't seem to understand it. So glad I found this forum ad everyone is so kind and supportive. It was only this site that made me realise that rls was a condition in itself. Docs have suggested fibromyalgia, menopause, anxiety, thyroid over the years and as such I have put up with the pain and sleep deprivation. Keep reading on here and hopefully you might find something to give you some relief x

[NualaokNe in reply to Sunshine458]

Hello why don't you ask your go for ropinrole I have been taking them for about five years and I don't intend stopping them quinnen sulphate also helps as well you need to take the ropinrole about fifteen minutes before you go to bed

[Madlegs1 in reply to NualaokNe]

Nuala- you seem to be one of few people who are on Amitriptiline without it boosting rls. Although you are also on Ropinerol -(at what dose?) Which may cancel it out.

Anyway - Ropinerol is a dopamine agonist and therefore will not advance Angelas' dilemma - she may get relief for a short time- but will be back on the tiger very soon.

I've answered that issue elsewhere on tjis post.

Cheers- and fair play to you for coping with MS and rls.

Did the onset of rls coincide with starting ami , by any chance?

[nightdancer in reply to Madlegs1]

madlegs have to agree with you on the Amitriptyline. In 20 years of managing RLS groups, I have found 3 people out of thousands that it does not make their RLS worse, so they say, but they still have RLS, so I question that.

[nightdancer in reply to NualaokNe]

Quinine is banned in the US and is only meant for leg CRAMPS, as in muscular cramps. RLS is neurological. Quinine is banned because of the heart problems it causes, and is only approved for the use in malaria. Many countries will be following our lead soon. All meds that had it in them, have been removed from the shelves years ago in the US, and not allowed at all. See the FDA web site for the very strong warnings on that. fda.gov (Federal Drug Administration) in the US, but the info is universal.

[Madlegs1 in reply to Hidden]

Angelanddanny

You have augmentation -search - magnifying glass top right.

[Hidden in reply to Madlegs1]

I accept that but what to take next ? I know all about augmentation

[Madlegs1 in reply to Hidden]

You need to get off the Pramipexole and go with either Neupro patch or look at Gabapentin/ Pregabalin/ Tramadol etc.

Check out the sites I have recommended elsewhere in this post. Good luck.

You will need Tramadol or oxycontin to help in coming off the Pramipexole (withdrawal)

Good luck.

[Hidden in reply to Madlegs1]

Ive tried patch and gabapenti. Dr won't give me tramadol !

[Madlegs1 in reply to Hidden]

Your Dr says you're at max dose of Pramipexole so what is he suggesting is the next step if not what I have suggested?

Does he understand augmentation?

Otherwise ypu need to change doctor. Depending on where ypu live, @ pippins might have a suggestion for a rls friendly dr.

Ferritin levels are not the full answer- and yours are adequate seemingly. Mine are 1200 and I have roaring RLS. Oxycontin is the only thing that has worked for me .

Dr B says my ferritin doesn't transfer through the brain blood barrier- so I don't understand the whole ferritin issue.

Cheers.

[nightdancer in reply to Madlegs1]

My ferritin is the same, very high, but not crossing the blood brain barrier means we do not absorb it correctly.

[nightdancer in reply to Madlegs1]

If Angel is augmenting, the patch is also dopamine and not recommended. You cannot go to another dopamine med if you are augmenting on one already.

[Madlegs1 in reply to nightdancer]

Is Neupro same as Rotigatine- in which case it has a slightly different mode of action and can be used as a transfer drug away from normal DAs. ( I think!) According to dr B.

[Grammieof4 in reply to Madlegs1]

True. Coming off pramipexole is AWFUL

[Linda_pink in reply to Madlegs1]

Thank you for the advice, down to 10mg of amitriptyline every other night so will see doc next week. So much advice and support on here especially when the medical profession don't always take it seriously.

[nightdancer in reply to Madlegs1]

you CAN go higher on the magnesium, no such thing as too much, you will know when you take too much, because it acts like a laxative and that is what I use it for.

[Grammieof4 in reply to Madlegs1]

I'm in the U.S. and can only find 250 mg magnesium. Anyone here know where to get 400 mg?

[nightdancer in reply to Grammieof4]

Most pharmacy chains will sell higher strengths than 250 mgs. Walmart does, too, Walgreens, CVS, and Rite Aid. GNC lots of places. There may not be 400 mg dose, but there is 500 mgs for sure. Check on the web sites, they will show you.

[Grammieof4 in reply to nightdancer]

I bought the 250 at Rite Aid; I will try Walgreen

[Joolsg]

Hi Linda, the amitriptyline is really bad for RLS. My neurologist put me on it for MS pain in my legs but it made my RLS so much worse that I stopped it straight away. Ask him to give you another med now. Agree with Madlegs on the sleeping situation. I moved rooms 20 yrs ago as my legs kept us both awake all night. Two grumpy, tired people is no good. It's actually much more fun to sneak into each other's room anyway.I'm awake with the jumpy legs now as I'm waiting for the gabapentin to kick in. Hopefully soon!!!!

[NualaokNe in reply to Joolsg]

Hello I am taking amitripltylin also for my ms , I have had RLS from before I was diagnosed with ms I also take ropinrole for my legs and it seems to work well

[Joolsg in reply to NualaokNe]

Hi Nuala, RLS can actually be one of the first symptoms of MS. You are definitely a rare exception if you can take the ami with the Ropinirole and it keeps your RLS under control. Long may it continue! Take care,

Jools

[nightdancer in reply to Joolsg]

Where did you hear or read that MS can be one of the first symptoms of RLS, Joollg?

[Joolsg in reply to nightdancer]

Hi Night dancer,

There are quite a few scholarly articles on it. It is only relevant to those who have other clear MS symptoms and a diagnosis of MS. Only a minuscule proportion of people with Primary RLS will develop MS but it can be one of the many early weird sensory symptoms that peeps with MS have.

Here's just one of the many articles on it, Jools x

belmarrahealth.com/early-mu...

[NualaokNe in reply to Joolsg]

I am also on amitriptyline and if it is so bad for me what should I take instead? I also take cocodomol and ropinrole . And when I am having a few sleepless nights I take phenergan to help me sleep I know it sounds like I'm taking a lot of drugs as I also take medication for asthma . And it all keeps my MS in control

[Joolsg in reply to NualaokNe]

Think you need to discuss at length with your MS neurologist but be aware that he probably is not very good on RLS or how to treat it or he would not have given you amitriptyline at the same time as ropinirole. I would ask why you are having sleepless nights. Is it the RLS playing up or another MS symptom? The ropinirole doesn't help the MS in any way- just the RLS. The amitriptyline is used for MS nerve pain but so is gabapentin so that may be a better option than the ropinirole.

Have a look at all the articles on here on Augmentation- you may find you have it in which caae you will need to read all the articles on withdrawal. It's not pretty- in fact it's barbaric but you can get off it as long as your neurologist helps by prescribing tramadol or an opioid to help you through. What DMT are you on for the MS?

[beady3]

Well Linda pink I am so sorry you are in this situation as it's awful ,I don't know what a lot of the people on this forum know but I have had rls for 47 yrs so know a bit,yes I had single beds and that was better than keeping husband awake,I have just had 10 nights sleep wonderful am now on Neupro patch and Tramodol as mine is very painful ,try those your doc sounds like everyone else's not a clue so read all you can in Back info about it and then go and you can tell him ,as I say stick up for yourself ,the neurologist are no better so don't pin your hopes on them,I wish you all the very best if you are awake at night write in someone is awake x

[Madlegs1]

Hi all- glad ye are all still alive this morning and hope the night was bearable- even with the new sleeping arrangements. !

Amitrip is really bad for the vast majority of people in antaganising rls. So get off it as quickly as possible.

On the rlshelp.org site there is an email facility to write to a Dr Buchfuerer (mjb) - anyone can write him a query and he will reply. Be clear and concise in your query- don't ramble. He would be classed a world expert on rls.

Also on that site there are articles on the various medications available for rls , dosages and protocols. Print and bring to your appointment 😤

The neupro patch has been a successful follow on to DAs after augmentation - but is itself a DA but works in a slightly different way. All of them will augment eventually. Even Tramadol has a very small risk (1-2%)

Sorry - have to go now- will finish later.

[nightdancer in reply to Madlegs1]

But, PLEASE do not bury him in emails. He give of his time freely and very generously, and I have known him for 20 yrs. Sometimes I feel like people take advantage, in general. Just an observation from me.

[nightdancer]

When your bed partner is disturbed and asking for separate beds,,,,, here is an idea. Two twin beds that can be pushed together, so your "night kicking", PLMD, will not bother your partner, sounds like to me he needs sleep also, and you both can't be sleep deprived. I know from experience and lost a long time relationship back years ago, because my sleep disorders exhausted him. Separate beds is not giving up, it is an alternative to help in many ways. When I was sleeping with someone, I used to worry all the time I would disturb him and ended up on the floor many times. he did not like that, so we did the twin beds, and it worked, but the relationship was too far gone in other ways by then. I only say these things to give you an alternative to some peace in the bedroom. MANY people do that to survive. By the way have you had a sleep study? Although, it looks like we know what it would show. PLMD disturbs the sleep partner more than the person kicking and it is not fair, but is a fact of life.

[Madlegs1 in reply to nightdancer]

Agree with nightdancer on all that - so much like my own story- I even slept on the floor on our honeymoon- there's Romance for you!😅 mind you - we had four lovely daughters- so something seems to have worked!😉

Actually- stress is a major part of RLS and so if you are lying in bed not able to sleep for fear of disturbing your partner- then the restless legs will surely knock on your door.

All the best.