Sorry folks I'm just on here to vent, went to my docs today about rls, cried and told her how bad its getting and how it's affecting my mental health, she told me to check with neurology and where I am on the waiting list, I was referred as an urgent case in September last yr, I did so only to find out that the neurologist downgraded my referral and it cud be yrs before I see anybody, proves to me that rls isn't taken seriously enough, in the meantime my pramipexole has been increased again (now 4 a night) and another letter of referral being sent with more evidence of how I'm suffering, it's a hard blow to take cause I'm running out of options 😥
Neurology : Sorry folks I'm just on... - Restless Legs Syn...
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silleecharle
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I know how you feel, not wanting to add oil to the fire but don't hold your breath on the neurologist, many of us here have been disappointed by their ignorance of RLS.
I once asked my GP to recommend a neurologist for a private consultation and he told me to save my money as none are interested as there is no money to be made with it!!
You'll do a lot better reading up yourself and this site is a wealth of knowledge, (and support). Sorry if this is disappointing.
taniabacon in reply to
I have already given up hope of help from a neurologist. If one isn't available for 5 months, it's no good putting my faith in that, I must find help soon, if I am not to choose the final solution. Sorry to be so negative. I have spent the whole day reading posts, trying to find out about CBD oil and the other suggestions people have made. Now my arms ache from being at the computer. My body is so weak from fatigue that even that is exhausting!
To taniabacon. It's very hard to take yourself off Pramipexole but you must. I had never heard of RLS Augmentation on Pramipexole until I read the posts here. They were right My doctor is angry that I have decided to get off Pramipexole and told me I had to stay on it but he agreed to give me Gabapentin. I already had a prescription for hydrocodone from my pain management doctor. So taking the advice of this support group I am weaning myself off Pramipexole I have been able to cut one pill entirely for a week and a half now and a second dose for the past two days. SO at least for the past few days I am completely free of the anxious despair and all those horrible symptoms of RLS. I have slept like a rock. Praise God. Now I also changed my diet. It's simple Just no sugar, flour, caffeine, avocado, alcohol, red meat. I'm taking magnesium, turmeric, B complex and calcium. I'm eating iron rich veggies and eating a banana a day. Now one more thing. What Pramipexole was giving you at first was to increase dopamine. In order to produce our own dopamine in our body naturally, here are the things I found and critical to you getting relief from your symptoms. To help generate dopamine naturally in your body 1. Listen to music you really like. 2. Create something you enjoy. Like painting or cooking or knitting. 3. Make a to-do list put on refrigerator and check it off as it's done. Gives you sense of accomplishment. 4. Discover new things. Discovering this group for example. 5. Non- strenuous exercise - like walking the dog. 6. Increase your Tyrosine ,i.e. Eat almonds, bananas, chicken, eggs, green tea and yogurt 7. Meditation. This is what I am doing. It's working so far for me. But everyone is different. Find your path and get on it to recovery. Don't wait PS. Just making a plan and going for it increases the dopamine in your body.
in reply to Crazyleggs
I'm glad to hear you've found things that work for you!
Can I just add a cautionary tale about tumeric? It is really potent. If you start getting extreme leg pain (so much that you really can't walk), look into tumeric as the culprit. (A while ago now) I started on tumeric, got leg pain shortly after (to the point where it hurt to walk), stopped taking it after two days, and voilá! No more extreme pain! The same thing happened just recently when I tried Bromelain (pineapple extract).
Both are herbs and act as anti-inflammatories.
Crazyleggs in reply to
Thank you Jess. That's good to know. I do not want to add to my symptoms. I will proceed with caution.
Xaela in reply to
Thanks so much for the advice! Almost made a mistake using the turmeric.
Joyceellen in reply to
Wow. I didn’t know about that
Thank you for thinking of me. I am down to one pramipexole now and will be off entirely after Wednesday. I now have an appointment 28th a neurologist next week and I am going to be very honest about what I need. I have been in hospital for almost a month now, so I get some help with the terrible anxiety and depression that has dogged me. I pray I can find a solution to help permanently. X
Now I take Horizont, an ananxiety med and the patch for RLS
Thanks for you I put. I like your answer going to print it and put it on my Refrigerator
That is the medicine I have been on for a yr, I think RLS is worse,!
CBS oil did help me but wasn't reliable.
Dr claims pot could help.
EDWARD1001 in reply to
Thank you so much. Although I have had RLS for some time, I had never been officially diagnosed.
I told my doctor about my RLS. She prescribed pramipixole. I know nothing of it other than I am on the max. dose and it apparently has had NO appreciable effect. Now, I a here to become knowledgeable as to the withdrawal difficulties.
Thank You!
Hi,
I am really sorry for your symptoms. I truly hate the name Restless Leg Syndrome because it implies someone has to shake their legs out now and then and dismisses the diseased or altered neurology that is a root cause of RLS and truly robs a person of sleep thus having a domino effect on mental and emotional health! How I wish this forum was required reading for all neurologists!!
That said, I'm glad you have found this forum and feel you are in a good place to learn from the true experts- those who are living with severe RLS.
Most recently I found the one thing that has consistently given me nightly relief with a few exceptions. I am taking 700 mg Magnesium in powdered form about 30 minutes before bed. It has been effective. I share this with the caveat that I have seen here many times, that while one remedy works or offers some relief for one person, it doesn't always generalize to all. It may be worth a try.
I am so sorry for the lack of care you are getting from the medical system. It's a crying shame and I think I can safely say that most of us have been there.
Sending a hug.
Hi hcinmn,
I am really interested in your dose level of 700mg Magnesium more for our own education purposes. We prefer natural supplements to manage our health where possible and are keen to let others know of the benefits.
Can I ask you how did you determine you needed 700mg? Did you start with less and work up?
Do you notice any other side benefits?
Do you notice any downside to taking the magnesium?
Do you take any other multivitamins that contain magnesium?
We take 200-400mg of magnesium citrate. We have used both powdered and tablet magnesium successfully for rls. We prefer natural supplements to manage our health where possible and have been taking magnesium for rls for many years now.
We also take a good multivitamin which has 200mg of magnesium so we would be close to your 700mg.
We have noticed :
Better sleep than I've had for years.
Feeling calmer, less anxiety.
End to constipation.
On the downside and one we are prepared to put up with! We have noticed slight loss of muscle tone. This could be lifestyle or age, (50's).
It would be really useful to hear your take on the above.
kind regards
Hi Bluey,
Thanks for your interest in my magnesium supplement. I will try to answer your questions... I met with a mental health nurse practitioner in the past who recommended the following supplements to support mental/ emotional health. I will include them here because some folks may want to give some a try in order to address some imbalances that may exist in the presence of amxiety and/or depression.
Omega : 2000-4000 mg
Vit D3: 2000-4000 IU
B Complex
B6 50 mg
Probiotic
And Magnesium:
200-1000 mg
Keep in mind that I am not a doctor, but you could work with a practitioner to use these as guidelines or do some of your own research.
I just guessed and decided to take approximately 600 mg Powdered magnesium in my case and it has overall done the trick. I do have some GI upset the next day but can live with it because near total relief from my RLS is well worth it. I may try to go down a bit on the mg's to see if a lesser dose is still effective.
My multi doesn't include Magnesium.
I have noticed better sleep and reduction in stress/ anxiety also.
Have also seen info that recommends:
B12: 2.4 mcg. Ask your dr. If you might benefit from more
Folic Acid: Taken as a supplement or through foods:
Peanuts, garbanzo beans, lentils, and spinach
Sorry for your frustration.
At 4 Prami you are way over the best safe dose for RLS. No use waiting for neurology ( who may or may not be any help- don't hold your breath) to help you. You need to take action- educate yourself and as Raffs says take control yourself.
Get off the Prami and on to Lyrica/gabapentin/ tramadol- whichever suits you best ( trial and error- unfortunately)
Look up the websitez mentioned ad nauseum on these posts.
Good luck.
The worse think to do is your doctor increasing the Pramipexole. Its sounds like you are already Augmenting on the dose you have been taking. Go back to your doctor, tell them you are Augmenting on the Pramipexole, that you need to be weaned off it and you need a strong pain med to help with the wihtdrawals such as Tramadol, that you need to be weaned down very slowly. Its no good waiting to see a neuro, they probably wont even know what augmentation is or how to treat it. Where on the forum we see it all the time and have members like you who have had to wean down from a dopamine med successfully. Also are you taking any anti-depressants, or any other med from your doctor for any other health issues, or any OTC med. lots of meds can make RLS worse. so, that MIGHT be a reason for your symptoms being worse. Otherwise its usually Augmentation as i have already stated.
Yes, return to your doctor as Elisse says and say you are suffering with augmentation. Your doctor probably has no idea what augmentation is so you will have to be the one to explain it to him/her. As a back up, take a copy of the following link and give it to your doctor to read, whilst you are there.
sleepreviewmag.com/2015/02/...
Restless legs syndrome (RLS) augmentation is a formidable foe. It describes a not-uncommon phenomenon in which—after weeks, months, or years of a patient’s RLS (also known by the newer name of Willis-Ekbom disease) being well controlled by a dopamine drug—the symptoms become more intense, take less time to occur when at rest, manifest earlier in the day, return more quickly after taking therapeutic medication, and may spread to other parts of the body. - rls-uk.org/
silleecharle in reply to
Iv told my doctor I'm augmenting but I was met with a blank stare, iv also mentioned compulsive behavior but it went right over her head, im taking nortrypiline for chronic back pain and asked if it cud b making my rls worse, again I was met with a blank stare, I'm at a loss wen they won't listen
I am 73. Have had RLS since I was 22 years old. When I was a baby my mother said I would rock back and forth on my knees and hands. Try it. It helps. (Yes I've been that desperate) I've also found that moving a piece of silk cloth between my thumb and finger (my mother called it "fiddling") helped. It's how I destroyed my baby blanket.
My wonderful RLS doctor now is a sleep specialist. He listens! He didn't know much about RLS when he first met me but he listened, did research, and cared.
I'd change my GP if he or she proved as - witless I was going to say, but won't - as unhelpful as you implicitly describe. If you've got the energy, I'd dig around a bit looking for other RLS sufferers in your neck of the woods, and see whether any of them can recommend a GP.
In fact - just off the top of my head - it might be an idea if RLS sufferers in an area all ganged up and registered with the same physician. What about placing a small ad in a local paper or getting people on local radio to do a spot. Bit of grassroots activism.
Anyway, given the experience and calibre of people on this list, you'll never be short of good advice.
I like that idea Pluto46. However, looking on this site at how many members live near me- there are none within 5 miles ( as I live in London that will be an hour's drive away in traffic so will not be allowed to register under same surgery).
I live out in the sticks in Norway, a small place of just under 8000, and I haven't tried to communicate with any others round here. Just occurred to me that a bit of 'bottom-up' activism might help.
Oh dear, I'm in Colorado, USA. Our country is thinking of getting socialized medicine. Here I can get an appointment with a specialist like a neurologist within 3 months for the first appointment. In Colorado I have a (family, general practitioner, primary care physician) for sore throats etc. Then I look for a specialist for everything else. Luckily when I moved here I found a great group of doctors who share their computer records.
In New Hampshire, the general practitioner took care of almost everything.
I am new to this site, but reading this this morning brought tears to my eyes. I too am now taking 4 pramipexole, the effects of which last about 4 hours, and then I am back where I started. I have not had more than 3 hours sleep (not consecutively) for weeks and weeks. I suffer from severe depression and anxiety, and if I fall asleep am awakened by either a panic attack or severe coughing. I have been taken off ramipril this week, in the hope that will ease the cough. I also experience paresthesia in both legs as soon as I sit or lie down, so it is impossible to even rest comfortably for a few minutes. I too have been referred to a neurologist, only to be told I have no chance of being seen before Christmas. The exhaustion I now feel, the inability to concentrate, the despair at the GPs lack of understanding of how debilitating and distressing this condition is, has led me to start considering taking my own life. I feel as if I am speaking a foreign language that the doctors cannot hear or comprehend the severity of how I am feeling. Sorry.
Please don't do anything so dreadful, you must go to your doctors and like some of the other people on this forum, get them to help wean you off the dopamine drugs. Have a look at the cannibis oil mentioned in one off the recent posts. Good luck and stay strong.
I have spoken to a wonderful man at CBD Brothers and he is sending out something for me, which he promises should arrive tomorrow. Perhaps it will help me to sleep. I hope so.. Thank you so much for your kindness.
I bought my cbd oil off the same ppl, unfortunately it didn't work for me but I truly hope ur different
Iv tried the oil...didn't work for me unfortunately
in reply to taniabacon
Please don't hurt yourself. Suicide is a one-way street, you cannot take it back. I suffer from depression and anxiety as well and find that yoga and tai chi help. Have you tried mindfulness, progressive relaxation, or any other form of relaxation? I know what you mean about speaking a foreign language. Nobody understands the hell we go through, physically and mentally, with this condition! I was recently "pushed aside" by my neurologist after he and my other doctors (they all met together to go over how to further my treatment) decided they would steer my treatment towards dealing with the psychological. While I initially agreed with the change in plan I am not so sure that I like it now (I decided this during one of my rare moments of being fully awake). I mean, how are we supposed to fix the psychological if we don't first fix the issue of not being able to lie down and sleep??!!! One is going to get more depressed and anxious if one can't sleep! It's a vicious cycle!!
God bless! Stay strong; you can overcome this!
taniabacon in reply to
I hope and pray for your sake that the psychological approach will help in the long run. However, there doesn't seem to be time for just 'wait and see', does there? The condition is distressing RIGHT NOW, and it's impossible to see the bigger picture. I am convinced RLS started because my doctors refused to address the severity of my anxiety, choosing to pile on larger doses of anti-depressants - one of which, Mirtazipine, is known to aggravate RLS. I have stopped taking it, along with beta blockers, which I believe are also contra-indicated. I suspect most GPs and an awful lot of psychiatrists too, consider RLS a sort of hypochondriacal disorder, and just hand out ever greater doses of pramipexole believing that will work eventually. I am too tired to engage with them anymore.
in reply to taniabacon
I know what you mean about not wanting to engage anymore with doctors. I'm not sure of anything anymore. Meds. can make RLS worse and anxiety can make it worse. But then take away the meds. and we get depressed! When will it end??!! My husband suggested I switch all psychiatric meds out with St. Johns Wort so I don't have to go through this madness anymore. I'm glad you stopped the meds that are believed to make RLS. Congrats with success on that! I am on a med (Lexapro) that can excuberate RLS. I've tried going down two different times (at different rates) and got very depressed both times, so I guess I'm stuck. Stuck unless they put me on another med at the same time. But who knows what side effects that would have! It is extremely frustrating!!!!
taniabacon in reply to
my care co-ordinator who sees me periodically between visits to the psychiatrist keeps urging me to continue with my meds until I can see a professional. As there is NO doctor currently attached to the mental health centre to which I am assigned, that could be a very long wait. I am pretty sure they do not believe I get only a couple of hours sleep each night, but that I am exaggerating to get attention. I cannot now remember a night when I was asleep before 3am, certainly since the start of this year. Unfortunately, my depression is far too severe to be able to rely on St John's Wort. I am becoming paranoid about everything I have been prescribed, in case there may be a link to RLS or paresthesia. I sincerely hope you can find something that will work for you.
in reply to taniabacon
Thanks for the reply. Yeah, I definitely hear you in regards to med. paranoia. I am sorry to hear you are having such a tough time. My therapist gave me a copy of a week plan (sort of). Every night before bed I'm supposed to record 3 positives things that happened that day. It's not enough to think about them; you have to write them down so that you can see them over and over and remind yourself. This helps you to re-discover the positives in your life (because, God knows how us depression sufferers lose the ability to see those).
All the best to you!!
Bluey2017 in reply to
Hi, just posting again about magnesium. Check out the posts here, my husband is taking magnesium citrate 200-400mg for over 7 years and has near total relief from rls. The only time it comes back is if we run out. Magnesium is a natural substance needed for the efficient working of the muscles. Without it the muscles contract. For overall bone and joint health we take boron 8-12mg, almost an essential trace element, it regulates the hormones which control the distribution of magnesium in the body among other things. Its also a powerful anti inflammatory and good for joint health. We look to natural supplements for healthcare rather than drugs if at all possible. Most medics are not trained in the benefits of supplements. Best of luck!
Yes, my RLS nightmare started in December of 2016 and I echo everything I have read here. I spent nearly 7 months with severe symptoms that robbed me of 6/7 hours sleep nightly and resulted in a really low quality of life and utter frustration/depression. As I shared earlier in this thread, 600-700 mg of Powdered magnesium nightly has been a life saver for me. I can generally sleep soundly through the night with little to no symptoms. It is worth a try but you may need to wade through some withdrawal symptoms first so keep it in mind for now and/or later. I'm sorry for your experience and the ignorance that abounds as relates to this class of drugs (dopamine agonists), but I'm glad you are here.
Great to hear magnesium is so effective for you!
Maybe its time to educate the GP's, a natural substance and a possible alternative to medication.
Thanks good to know
My mother had RLS. She died in 2009 at the age of 100. I am 73.
in reply to taniabacon
I too have thought of ending it - my one fear is what if we are here to learn and by opting out we have to go through it all again?!?!
Remember that in the 80's AIDS was a death sentence, nowadays it can be controlled by drugs. We need to stay positive and keep working at finding our own solutions while we wait for the drug companies to catch up.
Also remember - the Dr might not, (likely will not), understand but we do. There is support here for you day and night USE IT! If things are getting tough PM me. Bitch, moan, whatever I will get back to you, you are not alone.
Take care and stay strong.
taniabacon in reply to
thank you for your kindness. You are right of course. But I am too tired now to do anything. Perhaps this too will pass.
Tania, please try magnesium citrate, I was feeling exactly like you only 2 days ago, I have been taking magnesium also vitamins b and d and for 2 days my rls has stopped, I can't believe it myself but it's true, I just hope it stays this way.
I have been rubbing magnesium oil into my legs and feet with no discernable difference, worse luck. But I am intrigued and delighted for you that you have found a way through this.
Oh Tania, don't do anything drastic. I know exactly how you feel as I was in that place a year ago and did actually research getting hold of nembutal on the internet. Severe sleep deprivation combined with the constant feeling of RLS can do that to you.
You need to go back to your doctor, show him/ her the posts on this site, get diazepam for the panic attacks and a strong pain killer like tramadol or codeine and wean off the pramipexole as it seems clear you are augmenting on the pramipexole. You don't need to see a neurologist - as Raffs says above, they don't know anything more than you can find out for yourself on here. Read everything you can on augmentation and getting off pramipexole.
Do it slowly and with each reduction in dose, you'll feel dreadful but the painkillers will help. It's hard but once through withdrawal you can switch to gabapentin/ pregabalin and/ or codeine or oxycontin.
There are at least 2 people on here a week going through what you are, and lots of us have come off the dopamine agonists with the help and advice of others like Elisse and Pippins.
Stay strong, you are not alone and you will get through this. Get your GP onside and start getting off prami.
thank you for your suggestion. I am taking 2mg diazepam at night, although the doctor would only give me half a dozen. That does help the anxiety a little, but still not enough to get me off to sleep. I have been wondering about augmentation, as the pramipexole seems to do so little for such a short time. I am scared to go back to the gp, I was only there on Monday, which was when I asked to come off ramipril. I was told 'one thing at a time', as if I had to expect to endure pain before I deserved any other drug.
The GP needs to read this post and educate himself/herself on augmentation and withdrawal. Sadly, most GPs are totally useless when it comes to RLS and do more harm than good due to ignorance of the condition.
Can you see another GP in the surgery? It's really important to have the GP onside as they will effectively be your drug dealer- giving you the essential drugs you will need to get off pramipexole. One of my GPs actually told me off for researching RLS on the internet, even though she had never heard the term augmentation in relation to RLS.
Go back, turn on the tears ( that won't be hard because you are in a bad place) print off all the articles on here on augmentation and withdrawal and ask your GP to look at the website here and
The California website is run by Dr Buchfuhrer, an expert in RLS and he lists all the questions asked of him and the replies. If your GP reads some of the newest posts they will see many questions about getting off dopamine agonist drugs and which drugs to introduce once through withdrawal.
My GP and MS neurologist now accept I know more than they do about RLS and that I have all the medical books available. But, it took over a year to get to that place.
As Raffs keeps saying, you are responsible for your own health when it comes to RLS so read everything you can, educate yourself and KNOWLEDGE is POWER. Be strong and you will get off pramipexole, you will get through withdrawal and you will get sleep once through it.
Take care
Jools
thank you so much. I shall spend this evening researching coming of pramipexole and I shall print off several copies of the strands about augmentation. I shall try to be strong. x
Yes, keep strong, tania. We are here to help you. 
Hi tania,
I would not worry about going back to the gp because you were there on Monday. Members of the forum will help you as they have helped others get off pramipexole and other dopamine drugs. Keep calling in, as often as you wish. I am afraid we have to educate the doctors about RLS. Knowledge is power.
I expect you have seen this link regarding augmentation: sleepreviewmag.com/2015/02/... Take a copy of this with you to the GP.
Restless legs syndrome (RLS) augmentation is a formidable foe. It describes a not-uncommon phenomenon in which—after weeks, months, or years of a patient’s RLS (also known by the newer name of Willis-Ekbom disease) being well controlled by a dopamine drug—the symptoms become more intense, take less time to occur when at rest, manifest earlier in the day, return more quickly after taking therapeutic medication, and may spread to other parts of the body. rls-uk.org/
This link is for medical professionals on the RLS-UK website: rls-uk.org/professional-res... Your doctor may like to take a look.
I am printing out these links right now, and shall get them to my doctor somehow. Thank you from the bottom of my heart for all your, and everyone else's, care and support. I don't think I would have got through today without it. x
We are relieved that you found us today, tania, too. With your new found friends you will get through this. Just keep in touch and let us know how you are and how things are going, both the good and not so good. You already know more than your doctor about RLS so hold your head up high when you next communicate with your GP.
Hi Tania,
I am so sorry that you feeling at your wits end... I am glad that you came here and shared with us though. Please stay with us and get as much support as you need. All the People are so helpful here!
They all mentioned everything I would of said too so just wanted let you know that I am here too!
Stay strong and there is a light at the end of the tunnel.
Lots of love ,
Bx
Aww taniabacon I feel for u cause I only admitted to my doctor on Tuesday that on a couple of occasions after days of no sleep or rest ib resorted to self harming....not to cause myself serious injury but to cause pain so the horrendous feelings from rls are overpowered, I'm embarrassed iv resorted to this but I'm slipping deeper into feelinga of loss and despair, it's like no one gets the severity of it x
I'm so sorry. Somehow we think only youngsters do foolish things like self-harming.... but I am 62 with scars from cigarette burns all up my left arm. Sometimes pain is the only thing that relieves pain. I hope your doctor was not dismissive but could empathise with the place you are in... and I pray you will find some relief that is less self-destructive. x
I spoke to this Dr 2weeks ago on the phone and I cried inconsolabley, trying to get her to understand and again the only answer u ever get from them is to increase the dose, fast forward to Tuesday and I cried again, pure desperation for her to understand and her answer again was to increase the pramipexole dose, I told her iv self harmed, she looked at my wrist and looked at her screen saying nothing, I'm wondering wots the point, I suffer chronic back pain and had an op 2yrs ago, some days I can't walk but add to that rls which want to do nothing but walk as u can imagine it really messes with ur head, I'm 42 and feel my life is over
I am so so sorry. I wish I could come and give you a hug and have a good shout at that doctor. I have just dropped off a print-out of stuff about augmentation at the surgery, in the hope my dr will read it. Could you try that, give her 24 hours to read and inwardly digest, and make another appointment urgently, before she forgets all she has read?
My Drs surgery has a 2wk wait as standard for an appointment and that's just for whoever is available I'd probably have to wait longer for a particular Dr, it's so frustrating cause sometimes u need to see the Dr who has helped in the past but they aren't available x
I am very familiar with that state of affairs. I have written a letter, with the print-out, begging to see her sooner rather than later. The NHS is hopeless right now. We are using what little energy we have just staying alive, we haven't got any extra to explain over and over again what the problem is... and what we suspect might help. Make an appointment anyway, at least you will have that to work towards. Have you considered presenting at A&E and asking for a psych. assessment? i have just been advised that I should do that if I go on feeling 'at risk' and my current mental health provider is not able to arrange anything fairly soon.
First of all: do not give up! Instead of killing yourself (I've been there) move to Colorado. It's less drastic. My daughter made me promise not to take my life. (Darn) The older I get, the more I'm afraid of dying. I'm not sure what is different from when I was younger. Thinking of my daughter is enough to stop me from suicide now.
I know what you are talking about. RLS is awful. Now I am taking oxycodone which helped at first but now is only helping for an hour. This means now that I have relief from RLS using the patch, I am going to try to get off oxycodone. The thought of being addicted to anything scares me.
I agree with you. Write to us everyday we care. We are in the same boat. We all need a buddy. So here I am. Your buddy
My heart goes out to you. Lots of great people and thoughts on this site. Share your pain anytime, we truly understand how maddening it can be. I have used a calcium magnesium powder from the local health food store on days when i take my meds to late. It seems to help quite abit. Hang in there, dont stop trying new things, as you may find the key when you least expect it. Best regards...
I have been using magnesium oil rubbed into my legs at bedtime for a couple of weeks, hoping it would help. Apparently magnesium by mouth is less well absorbed. No luck yet but I keep hoping.
Tania, just a thought, I take it you have had your ferritin levels checked?
I had a blood screen recently. Nothing abnormal detected.
If the blood screen you had recently included a ferritin test, the result may have come back as normal BUT for someone suffering with RLS the level needs to be higher.
Do you have a copy of your results? You are entitled to a copy. It is your right.
i don't but I shall ask for a copy. I am sending a copy of the document on 'Allaying Augmentation' to my GP tomorrow, with a link to the medical professionals resources, and asking to see her again asap.
Good on you tania. A positive action. There have been a few positives for you today, would you say?
Gentle hugs being sent over to you.
there have, there have, Kaarina. I can't thank you all enough. x
in reply to taniabacon
Have you tried support stockings? The tightness helps calm my leg movements. My nightly regime is magnesium oil and tights. The day after my first night with the tights on I was so excited about them that I told my neurologist. Do you know what he said? He flat-out said "those don't work"! I had to stifle a chuckle since they worked beautifully! I know that different things work for different people, but I'd give it a try if you haven't already.
Take care!
taniabacon in reply to
I think I know what you mean. I have to wear socks at night. But they don't really help exactly, it's more that I can't work out if my feet are cold because of the weird feelings. Magnesium oil hasn't yet worked for me, but I keep trying. I can't even bear to get under the covers in bed, as though the weight of the duvet makes things worse
You might not be getting enough magnesium with the oil. Lots of research out there in magnesium supplementation.We're on it over 7 years now after trying everything and it works, 200-400mg magnesium citrate last thing at night. See results within 7 days. Get a good nights sleep too and less aches and pains in the morning. Hope this helps.
Magnesium without calcium wont help. You need both in a bio available form. This is also used for calming but helps muscles communicate. Im not a dr, just what i have learned from riding a bicycle long distances.
Take care combining calcium and magnesium. All of our research points to magnesium for muscle spasms and we've been taking mag without the cal for 7 years or more with great benefit from rls. Most western diets are deficient of magnesium. In tests people who appeared to suffer from alcoum deficiency were actually peeing it out. Supplementing with Boron 8-12mg per day, regulates the distribution of calcium and magnesium, sending them to where they ate needed. Boron is an essential trace element and excellent relief for arthritic pain, joint health, anti-inflamatory. Good health!
What I use, and it works immensely is by Natural Vitality called Natural Calm plus Calcium noted as a "balanced magnesium-calcium drink". It contains Calcium glutonate, Magnesium Citrate, Potassium Citrate, and Boron Citrate. These are all minerals used in muscle nerve conduction. Just saying, it works for me. Has all the things required for proper muscle operation...
Ref: calmful.com - product webpage
Vent away. I am sure you will feel better
Sometimes best to listen your instincts than your doctor
People are here so helpful! So please read as much post as you can do you can start your journey with the knowledge.
I was on pramipexole for 8 Months and given up in April and never looked back. I have to say though it wasn't easy to come off but stay with us and we will give you the support you need on the way. Without this site I don't think I could of given up.
Good luck and hope you find something that works better than pramipexole.
Stay strong!
Bx
I am taking a letter to my GP's surgery tomorrow, with printouts, and asking for her to read them, although I know it is time-consuming for her. I hope she will arrange a follow-up appointment, if she hasn't already had enough of me. x
Hi, I hope this might help you. My husband had experienced rls for years. When I researched we found that magnesium deficiency is so common in the western world. Magnesium is needed for the smooth operation of muscles. Deficiency leads to muscle spasms. Within 7 days of taking magnesium citrate 200mg the rls stopped. Muscle cramps in his calves during the evening stopped. He gets a much better night sleep as he takes the magnesium last thing at night. Very loose stools are a sign that you could slightly reduce the level of magnesium. We dont mix the magnesium with other vitamins as this only leads to staying awake half the night. That was over 7 years ago. If he forgets the mag, symptoms come back after about a week. I frequently take 400mg at night for relief of arthritic symptoms. Medical doctors are not trained to look to supplements to address issues. Magnesium will not harm you at these levels. Magnesium in the bath through Epsom salts were not as effective at relief. Best wishes!
I've tried everything and always suffer with augmentation. I now take Targinact and that's the only thing that works. Don't give up!
I was on pram but now I'm on patches and so far so good it's been 4 days and my legs haven't twitched or become irritable I'm on 1 mg on a24 hour slits release patch
I don't know what to say to bring you some hope but hang on in there. Maybe we have to do something drastic to get the medical profession (generalisation) to take rls seriously.
Hey,
Was just rereading this thread and it made me think of something my GP had me write several months ago now. I was in such a bad place that the GP referred me to a special department here in Norway (where I live) for people in crisis. She had me draft a one-page essay describing what I was going through so that she could send it with the referral. That was a great idea! Since nobody could possibly make it sound as desperate as it was except for the person going through it this was my chance to ask for help! Maybe your GP needs to send another referral to this neurologist (or another one) and include your story with it. It might not work (it didn't for me) but it's an idea.
Really hoping you get help soon,
Where in the world do you live that you can't get help?!
First thing, the medication you are taking is known as Mirapex. You do not want to be on this medication! I was on it for many years when I started having rhinitis as an allergy to mirapex. I had tried twice before to get off of it and had to give up. This time I went to the ER and told them I needed to be admitted to a mental health facility as I was addicted to this drug. They gave me lorazepam as they did alcoholics. After about 2 weeks of much crying and shaking etc. I was finally no longer hitting myself in the head etc.
I'm doing well now and using the Neupro patch 1mg with success. I had tried this before with a higher dose and had problems shaking and feeling I was going crazy.
Try miralex and suppositories. Clearing out his stool cured my son.
I would skip the neurologist unless you have Parkinson. I found relief in my early 20' for RLS through a Pulmonary doctor with a concentration in sleep disorders. Start with contacting sleep disorder clinics for doctors in your area with RLS as their focus. You HAVE to advocate for yourself and switch doctors until you find one that listens. Most certainly mean well, but now at 57, I have learned the hard way they are only human and many have a "they know it all attitude". With the Internet, research and bring the information with you.
After years of dieting since going to W.Watchers at age 16 and keeping it off, I just realized through the Internet that switching to Praxipexole is most likely the cause if putting on 20 pds since I started it in July.
I have had SO many people and doctors tell me it is my age etc...no one listened. I figured it out tonight and am ending the Praxipexole immediate.
Hope my experience helps someone.
Keep fighting!!
Rls is hellish. When you say 4 every night how many mgs is that. Im on 0.18mg but I would like to take more
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