Exhausted!!!

[VickiAW]

So it's 2.50 am here and I've not had any sleep whatsoever. My feet and legs are burning and all over the place , i barely have more than 10 seconds between the 'twitches' and its driving me mad. Thankfully, so far anyway, my arms are ok. I'm so tired I'm wobbling all over the place when I'm walking. Had enough, right now I'd happily loose my legs!!!!!!

[Belsheart]

I hate the twitching. So sorry you're going through this

[VickiAW in reply to Belsheart]

It's hell!!! Hoping you're well

[Leelee49]

Hi, you are not alone, I’m calling my gp again later, if I’ve got to beg them to give me what I need, it looks like this is the time. Sorry you have to go through this hell aswell, hope you get some relief soon xx

[VickiAW in reply to Leelee49]

Good luck with your GP, really hope you get some help. Xx

[Leelee49 in reply to VickiAW]

Thankyou, hope you feel better soon aswell xx

[Hidden in reply to Leelee49]

How’d it go with the GP? Or should I not ask yet?

[Leelee49 in reply to Hidden]

What a waste of time, he gave me 300mg pregabalin to take 1 in morning 1 at night, so I’ve asked for 100mg and was given 200mg, to take the same, I must admit, due to lack of sleep, my heads all over the place and I can’t take in what’s been said. They wouldn’t give me anything else, saying there’re reluctant due to misuse. So I’m stuck with pregabalin.

[Hidden in reply to Leelee49]

Oh man, so sorry! Yep, been there before, where my dream appointment is vastly different from what actually happens, all because I’m too tired to argue. Then (during a brief moment of lucidity) I enter into the shock phase of what the f*uck just happened???

Can you try one of the things I suggest in my reply to VickiAW? Maybe one of those will help? Gosh, I sure hope so. We are dealing with a crappy, hellish syndrome here, aren’t we? Nobody can understand the true nature of the sh*t we go through. I’m in the midst of a “fight” with my doctors to take my second Augmentation period (my symptoms have recently spread) seriously. So far it’s “did anything happen recently? (No. Are you f*ucking kidding me?? I have body parts moving). “Are you stressed?” (Why yes, as a matter of fact I am. You not giving me what I need is stressing me out). “CBT therapy can help with that” (Wanna bet?). “I don’t think you’re augmenting” (how comforting. I feel so much better now).

Sorry, got carried away.

Hope you feel better soon!

[Leelee49 in reply to Hidden]

Hi Jess, yeah, I’ve tried a few of your suggestions, I do use magnesium oil in a spray on my legs, it worked great to start, but now not helping as much. Forgot to mention, I managed to persuade my gp to give me some sleeping pills, he gave me 7, no more than that he said, so last night I managed to get a good 8 hrs sleep, ahh bliss 😊 woke up feeling like I’d been hit by a bus though, legs ached like mad. But thankful for the sleep. I don’t understand why this horrible illness doesn’t seem to be taken seriously, if only they realised what torture it is.

[Smaslow in reply to Leelee49]

Did u ever try looking to go to a pain management Dr. I heard that our regular GP drs are afraid to prescribe these opioids to us so we have to suffer and take stuff that doesn’t work. But a pain management dr will monitor you closely as they prescribe stronger meds for you. I wish you luck and I’ll say some prayers for u 💕🙏

[VickiAW]

Well I've been up all night, its now 5.15am. I hurt so much..calves, knees and thighs. I've had terrible RLS but some awful uncontrollable twitches too, legs and arms all over the place. I'm shattered and teary. It just feels like it's gotten so much worse after being taken off the Ropinirole. I've not been given any pain relief or offered any form of alternative. I'll be back on to my neurologist first thing!!

Hoping you all had/get a restful sleep xx

[Hidden]

Aside from the burning, I was where you are for several months on end in 2015. It is dreadful to say the least! I am SO sorry to hear that things are bad. Please stay strong. You will get through this. To help drive this point in, I was in total despair of things ever getting better and almost ended it all. But I’m so glad I didn’t because things eventually got 85% better and I got my life back (my nights got better, so I went from walking around like zombie to awake).

If you would like, I can give you more info.

Sending you virtual hugs of empathy,

Jessica

[VickiAW in reply to Hidden]

Hi Jessica,

Thank you for replying and so very glad to hear you are better.

I am open to any help....I honestly don't know what to do with myself, I'm Exhausted!!

Virtual hugs back

Vicki

[SLMCP in reply to VickiAW]

Hi Vicki - it really is a nightmare, but sadly a real one. ..... have you been referred to a Consultant yet? Do you know the cause of your RLS. Mine is dopamine related so I see a Neurologist. I do very much hope that you can find something that will at least help give you some rest . I am currently on Pramipexole. Take care x

[VickiAW in reply to SLMCP]

Hi,

I was finally referred last December to a neurologist, he was unsure about RLS and thought it could be myoclonus so banned me from driving☹. I've had two stays in hospital for EEG's and am awaiting the results. After reassessing me he agreed it was RLS and put me on Ropinirole, it worked but I was so sick I was taken off it. I've just been prescribed Gabapentin 300mg so will see what happens. Also been referred to a sleep specialist...appointment is next week. As yet we font know the cause.

Hoping you're well x

[SLMCP in reply to VickiAW]

Hi there - had never heard of myoclonus so just read up a bit on it. Interesting to say the least and something I will mention to the consultant. ..... I too underwent a sleep study years ago at the very worse stage of MY RLS. I was hooked up to electrodes overnight and it was horrendous, purely because my RLS was so bad but I couldn't really get up and about for some relief, and slow because I knew proud were watching me! The results being, yes they could confirm I had some serious problem but had no answers!!!!

I really think we sufferers need to keep on asking questions and not be fobbed off with ' nothing more I can do' ...... It's our lives that are being severely affected and causing so much distress.

Good luck x

[CoMtWo in reply to Hidden]

What worked for you to help you get 85% better? I take 2 0.25 pramipexole hcl, 2 100 mg gabapentin and have been up to 4 to 6 of each until I brought things down after being on the Relaxis pad for 5 months. Now the pad doesn't work for me unless my symptoms are nearly intolerable and I'm afraid to ramp up my meds again. Trying to convince my sleep med doc (who treats my sleep apnea and RLS) to try iron infusion - but he says at 57 (whatevers - maybe ml/L?) I'm into the normal range. I don't do well with sleeping pills - I've tried Ambien and others only to find after 2-3 nights with each they stop working unless i really really ramp up the dosages - and then I'm a zombie the next day. I'm in a place (Colorado) where there is both legal recreational and medical marijuana, but I really need the advice of someone who's tried those before I risk taking the recreational (the edibles of that are ok, but start working middle of the night, so helpful only with 2-3 hours of sleep). And I can't convince any of my docs to prescribe medicinal MJ, since there is no "empirical proof"/FDA approvals of same for RLS (how that could happen when MJ is illegal nationally I sure don't know)!!!!

[Hidden in reply to CoMtWo]

I got off the Pramipexole.

[Hidden]

Hi!

Here is my arsenal of things to try. Not everything works all the time; what works depends on the severity of the movements. I give my experience in parenthesis.

-knee-high compression stockings (the tightness these give help calm milder movements)

-Relaxing Leg Cream by Magnilife (gives a nice tingling feel that is calming). You can get this at Walgreens (if in the States) and on Amazon.

-Lidocaine Plus Pain Relieving Liquid (does a great job at de-sensitizing the nerves)

-Magnesium oil (works wonders on RLS-related pain and helps calm the movements). This can be itchy, a sign that the mg is being absorbed.

-Epsom salt bath (soaking in this is a great way to relax the muscles). Same deal with itching since Epsom salts is another form of magnesium.

-stretch band used for “pumping” the legs

-pounding warm to hot water right up against every inch of my legs using the jet spray option on my showerhead (feels SO good)

-3 exercises in particular found halfway down this webpage:

healthline.com/health/restl...

(These are good ones! I remember telling my therapist once that I wanted to do the calf one to the point of breaking my legs off at the knees. She winced, saying “then you’d really be in pain”. My reply: “well, at least my pain of uncomfortable movements would be over”.)

I know I’ve used more before; I just can’t think of them at the moment.

Hope at least one of these helps.

Take care!

[VickiAW in reply to Hidden]

Thank You!! I got round till 4.30pm today before literally crashing out. I'd had a warm bath and tried magnesium spray...guess what....I've just had 3 hours sleep!!!!!! No idea if it was the spray or just complete exhaustion. Will try it again kater tonight

Wishing you well xx

[Hidden in reply to VickiAW]

Yay! Glad you got some sleep! 3 hours is a start; I hope it goes up from there!

[Joolsg in reply to VickiAW]

Oh Vicki

Withdrawal from Ropinirole is hell. I went through it in 2016 & I wouldn’t wish it on my worst enemy.

Jess has given you some great advice so try all her top tips.

The pregabalin won’t help until you’re through withdrawal (10-14 days after the last dose of Ropinirole) but then it should start to kick in.

In fact , changing diet etc won’t help until you’re through the withdrawal. Opioids and sleeping pills are the most effective treatment at this stage- but most GPs in the UK are totally unaware of how to treat Augmentation and withdrawal.

It does get better I promise. The constant twitches will ease off and you will start to get better nights.

Thinking of you.

Jools

[VickiAW in reply to Joolsg]

Thanks Jools, it's so hood to hear from others who understand.

Hoping you are well

[Joolsg in reply to VickiAW]

Hi Vicki,

I'm feeling very well thanks. You too will be feeling 1000% better soon.

Take care,

jools

[Hidden in reply to Joolsg]

Why, thank you 😀

Hope you’re doing well!

[Joolsg in reply to Hidden]

Very well at the moment Jess. How's about you?

[Hidden in reply to Joolsg]

well, thank you.

[CoMtWo in reply to Hidden]

Super, thanks. I'll try some of the over-the-counter stuff you've found works. I've found that using one of those foam rollers helps a bit as well - I place it under my buttocks at the edge next to my hamstrings and roll back and forth for a few minutes. I also roll on my quadriceps on it as much as I can tolerate. the stretch band is a good idea - I've used them for back/knee issues and so have those. At least 3x/week at my gym, after I ride the exercycle and/or walk the treadmill I do the stretches shown on the website you clued me into. And I cycle (outdoors that is) about once/week, indoors about 4 times/week, plus I walk paved trails in my Colorado home city once/week (as well as kayak once/week - though that ends up with leg cramps due to fixed position of legs - great relaxation though being on the water). I'm having an iron binding test this week to see if that's the issue - since my RLS/Sleep apnea doc doesn't think that my iron levels, at 57 mg, are too low (which I DO think are too low for an RLS sufferer). So I've been pushing him on that....I ended up with pretty bad RLS after taking myself "cold turkey" off Effexor (anti-depressant given me when in menopause after I'd stopped taking hormone replacement therapy and still had bad menopausal symptoms. After 2 years on Effexor I though I was "all done" with menopause and, without talking to my gynecologist, went off the meds....and started "dancing" within a few days! Stupid, stupid me! Thanks for your suggestions.

[Hidden in reply to CoMtWo]

You’re welcome! I go to the gym a lot as well (or I like to think I do anyway😆). I started with yoga and other aerobic classes, but switched to weight training ever since learning that anaerobic is better for rls than aerobic is. The thinking behind it is that anaerobic increases muscle mass, which in turn increases the dopamine amount in those muscles.

[Eryl]

Legs and feet burning from inside sounds like inflammation. A quick fix I've used when I've had twitchy hands at night is to rub them with Voltarol. I know that it's meant for muscular problems, but it does contain an anti inflammatory. It may ease the symptoms, if not eliminate them. My guess is that, if you haven't done an unusual amount of exercise is the inflammation is due to high blood sugar. Try cutting out sweetened foods like cakes, biscuits, desserts soft drinks, and trying not to overdo the carbohydrates.

[Joolsg in reply to Eryl]

Hi Eryl,

Sadly no diet will help Vicki at this stage. She’s in withdrawal from Ropinirole. I know eliminating E numbers has completely relieved your RLS but Vicki needs strong painkillers at this stage.

Once through DAWS she may then wish to try elimination diets to see if they help, bearing in mind some diets work for some people but not all.

[Eryl in reply to Joolsg]

Eliminating E numbers did not completely relieve my rls, but going on a low carb diet as well has. It might benefit you in other ways as well, so why not try it?

[Joolsg in reply to Eryl]

Eryl,

I have tried every diet out there. Strict Paleo for over a year ( so no carbs) made no difference at all ( although I lost a stone in weight which was not good as I was very slim before starting it). I then added in low FODMAPS for a further 6 months- no difference.

I am now on a strict vegan diet ( 8 weeks now) and that IS making a difference. And I eat carbohydrates!

So, it’s pretty obvious that some diets work for some people, but not all.

However, diets will not help withdrawal symptoms from Dopamine agonists. Only painkillers help at that stage.

Diets may help once through withdrawal.

[Eryl in reply to Joolsg]

I was responding to VickiAW.

[niabxxx]

The best thing I found so far is high THC marijuana tincture. put a dropper full under your tongue for a minute or so And before long that pain will be gone. I've had restless leg syndrome for 43 years in I'm in augmentation right now. It's awful the Tramadol doesn't do the job. But the tincture is a real lifesaver. Doesn't hurt to try out if you live in a place where it's legal. Much better than so many drugs.