In the space of a week I have gone from a sane and active older lady to a sleep deprived zombie, unable to grasp how this diagnosis, which sounds relatively innocuous, is about to disrupt and change my life and I'm struggling to come terms with the prospect of living with what I can only describe as maggots crawling around inside my legs from which I can find no relief. I have been prescribed ropinirole but have discovered that continued use could augment the condition. I am unwilling to take a remedy that could subsequently worsen what has already drastically and negatively changed me and my life. I dread going to bed because I know there will be no chance of getting a restful night's sleep, something that I previously took for granted. The future seems bleak and I am so depressed, panicked and utterly miserable.
Newly Diagnosed with RSL and trying t... - Restless Legs Syn...
Newly Diagnosed with RSL and trying to get my head around it!
Welcome to the forum. You will find lots of help, support and understanding here.
When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation as you learned and correctly refused it. . Instead ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Thank you so much for the information, much appreciated. I take OTC
Turmeric Capsules 2 daily
Vit D23 1 daily
Glucosamine sulphate 1 daily
Prescribed meds
Sertraline 75 mg daily
Atorvastatin 20mg daily
Symbicort Asthma inhaler 2 puffs twice daily
So glad I found this group, these GPs seem lacking in knowledge of the long term effects of these dopamine drugs or choose not to pass on to patients. Are sleeping tablets a no no?
How long have you been on the Sertraline? Why do you think your RLS reared its ugly head the other week. Statins can also worsen the symptoms of RLS.
Hi have you stopped or started on any of those medications recently? Think has anything else changed ? As for your question about sleeping tablets unfortunately unless your RLS is very mild the RLS will usually breakthrough which ends up with you pacing around during the night with a risk of falling .
You are on 2 medicines which can make RLS worse. As DesertOasis said sertraline is one of them. There are only 2 antidepressants that are safe for RLS - trazodone which also helps with insomnia and anxiety and Wellbutrin. And as she said Atorvastatin.
Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
Thanks for the advice. Have been taking sertraline and atorvastatin for 3 years. Can you suddenly develop RLS from medication previously tolerated well or perhaps my RLS has been caused by continued use? I will definitely raise questions and talk through the possible alternatives you have suggested with whichever doctor I get to see at my practice and ask to be referred to a neurologist. I reckon I was born anxious, it in my DNA and a life long problem that has adversely impacted on my quality of life.At the moment my anxiety is in overdrive which isn't helping. I am feeling overwhelmed and in a very dark and lonely place. Thank you so much for your very informative reply.
You’ve got so much truly solid expert advice that there’s nothing much I can add accept maybe to say that my RLS has segued into more severity with age & progression of my v early onset immune dysfunction & connective tissue disorder illnesses after an L4/5 lumbar fusion (for severe L4/5 radiculopathy) was only partly helpful, sadly causing my moderate lumbosacral scoliosus to segue into severe.
Another factor in the pie chart causing my version of RLS is that I’m 70 & my lupus was infant onset, with relatively early onset Sjogrens & vasculitis…all that gives me neuropathy (both small fibre & peripheral neuropathy (sural axonal, ie worst from knees to tips of toes)) and this has always triggered myclonic jerks (seems officially RLS is also known as nocturnal myoclonus) which apparently have stuff in common with RLS.
So, my version of RLS is a multidiscipline prob, which rheumatology, immunology, dermatology, my spine clinic & my GP all try their best to help me with. And finding + joining this forum is the best thing I’ve done lately: am about to start pregabelin, and would feel much more worried with out everyone here by my side. Am very grateful for your post & this wonderful discussion! Hope you’ll let us know how things go
💞💞💞💞 Coco
Thank you so much for your message. I am also experiencing involuntary 'jerks' not just confined to my legs, I am also very trembly. I am beginning to think my cause maybe multidisciplinary too. I sympathise with you and hope we can be in regular dialogue going forward. Best wishes and kind regards.
Ah, my dear: thanks❣️meeting you & everyone here responding to your thread has made my day 🌈🍀🕊️
See my post above, especially about having your ferritin checked.
Yes, thanks, I have read that closely: greatly helpful. Just double checking that I really can ask my docs about pregabelin only at night.
Re ferritin, will raise your points asap…for years my Ferritin has consistently been apparently fine via 2 monthly tests at NHS Cambridge Univ Hospitals where am in tertiary care with Rheumatology, immunology & gastroenterology, but I’ve never checked 5he details your advising with them, so will do now
Doctors will say it is fine but what is fine for others isn't fine for those of us on RLS which is why it is so important to get the actual number.
am so lucky I have always had all my blood results thanks to our patient portal. & now I’ll bear the details you’ve explained when I check my my historic results + I’ll be better prepped for my next tests, so thanks again
If your ferritin is not over 100, post back here on what it is and I can give you some advice on how, how much to take iron, which iron and what not to take at the same time.
Will do, thanks so much 🤗
Had a blood test to check ferritin levels last week it came back today as normal no action.
Doctors will say it is fine but what is normal for others isn't normal for those of us on RLS so ask for the actual number. And post it back here.
Hi, interesting to read your post, I am 68 and developed lupus at 27! Another painful and cruel disease which has caused severe osteoarthritis and 2 spinal fractures in last year.
Keep well 🙂
😄Hello nanpat: glad to meet you but wish we aren’t managing lupus, but does feel good to meet you here.
There are quite a few with RLS on the HU LUK forum, which I’ve been on a lot since 2011, but my feeling is this forum has truly expert RLS patients.
Re spinal fractures: what a ‘pain’ these are…my 3 are L1,2,5…all grade 2…triggered severe L4/5 radiculopathy + the recommended neurosurgery tipped the scoliosis into much more severe so my degree of disability has sky rocketed along with even more RLS. Which is what’s brought me to this amazing forum
It's not likely to have caused your RLS since you have used it for 3 years. Have you changed anything recently including diet, lifestyle including exercise, etc. ?
Stress can trigger a sudden increase in RLS symptoms.
There are “long term” side effects with any drug.
Over a decade ago, myfather suddenly got depressed and hypervigilant. Crying and camping out at the bathroom door waiting for my mother to come out. Crying when anyone that visited then left.
It was awful because this was a man that was whistling and happy every day! Always cracking jokes and carefree.
So we called his dr and he suggested an antidepressant. We said no because it was a sudden change. We insisted it was something else. So he suggest a psychiatrist.
We didn’t want him thrown on an antidepressant at his age (85) so we took him to a phycologist. She said take warm showers listen to music etc. Did not help. Poor thing was suffering and we were all a wreck helplessly watching him
I did a deep dive into all his meds and discovered that Zantac that he had been on for years had long term side effects including sudden depression, hyper vigilance etc. (long term side effects were buried on the bottom of the side effects list)
We took him off it and within 2-3 days he was his old self.
He has since passed away and I miss that “old self” every day.
Point is the doctors couldn’t figure that out. I doubt the statins and antidepressants help your legs but I’m hoping your doctor can help you.
If you do a search, you’ll find that RLS can be triggered by certain antidepressants 2-10% of patients
I hope you get some relief soon as it is horrific to go through. I remember that feeling of dreading to go to sleep.
Best of luck to you.
Hi Sue, my Ferritin test result was 139 ug/L there was no mention of a Transferrin result so can only assume the doc did not ask for one! Do you recommend asking for one?
It's probably fine. It is rare that it isn't.
Hi Sue, am seeing my doctor this afternoon, can you please confirm the maximum dose of Gabapentin I should take as I am 75 years old. It seems my doctor has prescribed a maximum dose of 300mg to be taken 3 times daily which is not in accordance with your advice. Thanks in advance.
That is how it is prescribed for pain - 3 times a day not for RLS and since it is prescribed off label the doctor who is obviously ignorant is just following the prescribing info that the company puts out.
Show the doctor the part in the Mayo Algorithm that says the usual effective dose is 1200 to 1800 mg.
You should start with 300 mg once a day at night and askfor 100 mg capsules for when you increase it.
Thank you Sue I can see it's going to be an uphill battle with the doctors!
Hope you’ll let us know how your appt goes….v much hope it’s helpful 💞
For what it’s worth: over the decades, I’ve tended to find U.K. NHS doctors v reluctant to prescribe off label unless they are consultants who are expert in my conditions & really interested in helping me. Also v reluctant to follow USA guidelines even from top centres of excellence like the Mayo.
That's awful, I will let you know how I get on!
Hi Sue, my doctor has prescribed trazadone to replace sertraline, have you got any advice as to how I manage the transition? I have cut sertaline down by 25mg from 75mg. Can you take Trazadone alongside a reduced dose of sertraline or do you need to ime off it completely.
You should ask your doctor or pharmacist. I do know you shouldn't suddenly stop taking the sertraline.
Lettuce, RLS doesn’t work that way. You don’t go from 0 to 100 in the span of a week. You must be predisposed to RLS and was recently prescribed a medication that provokes symptoms such as an SSRI or melatonin or HRT or calcium channel blocker? Or were you injured recently or had surgery? And you should probably fill out a complaint against the doctor who prescribed the DA.
I agree fully with this view.
Something has set your symptoms off so suddenly.
See Sue's post. She mentions and gives a link to the Mayo Clinic updated treatment guidelines for RLS, which has almost all.
Additionally, as you are in the UK, visit the website of rls-uk.org, and read all the info there. UK-based members that are very knowledgeable in general and specifically re the UK situation are Joolsg and Pippins2 and our moderator Kaarina.
Dear Lettucenotforget (what a very clever name!)Sue has given you such detailed advice and she, Joolsg & others on this forum will help you enormously.
Firstly you are not an "old lady". I am 73 but my godmum & other family friends are 100 plus, so think yourself young. I have to say that because I am a 73 year old "youthful lady".
For the moment I can only say try and look at the positives. Every day I say to myself "Simkim you at least are not in terrible pain"..
I have, like many here, had RLS for 30 plus years and I am still here.
When I first had RLS virtually no-one had heard of it and doctors didn't really know what to do with Mr.
So I, like many on this forum, have existed on trial & error drugs.
On the positive for you there is now this wonderful forum and we will all help you with tips, advice & hopefully humour.
I have a doctor friend who says he thinks I could add huge power to the Grid with all the energy I must create running about at night!
I have at long last a wonderfully supportive GP & he now actually says "what is the advice from your forum".
Take heart, Lettucenotforget" we will all support you.
But I do hate people who say "Oh, but I sleep 8 hours a night"!!
We will speak again.
Simkin
I love what your doctor friend said. Gave me a good laugh.
Yes me too!
I don't think I replied to your lovely welcoming message. Thank you so much for the moral support and friendship it is much appreciated. Since joining the group I have seen another GP at the practice and he has been open to the suggestions from members of the group, so a big step in the right direction. Best wishes and big hugs to you and many thanks for reaching out to me. So glad I found this group. Xx
So pleased my message helped and your new GP sounds good news.I have honestly found the support I have been given by the members on this forum has changed my RLS journey and I am sure you will find the same.
Looking forward to keeping in touch.
Xx
Me not Mr!
if it helps I can think of one benefit of RLS and that is getting fit. I have a selection of methods to deal with my whole body RLS which comes on each time I awaken in 2 hourly shifts. I find yoga stretches can mostly switch it off for a time as can tiring my legs out on an exercise bike. Hot baths give some relief and walking barefoot on wet grass. Healthy anti inflammatory diet and medicaa as l cannabis a great help to reduce symptoms snd help me to sleep. I am nearly 75 and have had the condition for 50 years. So far I have avoided medications. I hope your condition is temporary - maybe caused by a medication of other factor. Good luck and there is great help on this forum.
Goldy700, I laughed about the bike because I bought an exercise book years ago and used to go downstairs & cycle but although my legs were in overdrive my head kept dropping on the handle bars.But I then was so thrilled to find a book on RLS with a drawing inside of a lady peddling furiously and her head is fast asleep on the handle bars.
"That's me. I am famous at last" I shouted to my husband!
I must try & find the book....
can you tell more about the type of cannabis that helps you sleep...I am still searching.
Thyroid2468 - Any strain that works well for insomnia is good for the legs as it helps by calming the body. The purple strains such as Granddaddy purple are the most sedating as they have the most Myrcene. Depending on where you live, I hope medical cannabis is available to you. Your doctor would be quite experienced in what works as they see and hear results all the time. Worth a try and good luck.
leafly.com/news/strains-pro...
Thank you!!! I am in NYC… !
Lettucenotforget, further to my long email I do strongly advise you to join the RLS Society. It is so worthwhile and they need support.They produce a really interesting newsletter with up-to-date information and they have an AGM every year with guest speakers.
Simkin
You are at the best site for support! You will learn so much and get the support you need!
A game changer for me (while not completely making my RLS disappear), was getting off of sertraline. Find your triggers and eliminate them.
I wish you well!
Hi Flute, I have now been prescribed Trazodone for depression/anxiety instead of sertraline. How long did it take for you to stop sertraline? I have already reduced it by 25mg from 75mg, just wondering how you went about stopping it.
One day I took Sertraline, then the next day I took Wellbutrin (not sure where you are located, but I don’t believe it’s available in the UK). I did fine that way. What did your dr recommend?
Flute, how long were you on Sertraline for? And how long the Prami?
I had been on the sertraline on and off for 15+ years. Then I learned on this site that it was making me worse. I told my dr to take me off of it. I am still on the prami after 10 yrs.
I’ve learned (on this site) of foods and meds to avoid, to keep my iron up, and drink a lot (a ton, little by little) of water.
Yes, I agree!!! And as long as you’re taking iron, I recommend taking it at night, on an empty stomach, about 2 hours before bed, and preferrably ferrous bisglycinate.
Higher serum iron (which is completely different from ferritin) equals higher brain iron. Our serum iron plummets at night and our RLS symptoms appear. 50mg of ferrous bisglycinate rids me of RLS in one hour, for one night.
I asked if I could change from Sertraline to Trazodone because Sue Johnson said it treated depression and anxiety. Since diagnosis my anxiety has been in overdrive so I'm hoping this will help me more. I'm located in the UK and I don't have a lot of confidence in any of the GPs at our practice for RLS. He just told me to wean myself off Sertraline. Thanks for your reply, how long did you take Sertraline for?
On and off for 15+ years
Lots of great advice here! Your biggest problem going forward is the ropinirole - nothing good about it! I think many people can have suspect iron stores. Picture a coffee cup filled to the brim with iron, just parceling out enough for all your various bodily reactions. Something happens - diet, absorption issues, drug interactions, injury, afflictions, etc. The coffee cup level dips down - perhaps contributing to Brain Iron deficiency, a leading cause of RLS. Sue's advice above is spot on as usual!
Don't start the Ropinirole!Sadly, UK doctors aren't taught anything about RLS, so they simply look it up and see that Ropinirole is the medication to prescribe. It WILL cause worsening.
Look at RLS-UK website.
It does sound like RLS - the maggots crawling in your legs.
Your GP should follow the 4 steps below:
1. Take full panel, fasting,morning bloods. Raise serum ferritin above 100, preferably 200 by pills/iron infusion
2. Review and replace trigger meds ( anti depressants like sertraline, sedating anti histamines, statins, beta blockers, PPI gastric meds)with safer options. RLS-UK website has list.
3. If 1 and 2 don't work, prescribe pregabalin at night only.
4. If 3 doesn't work, prescribe low dose, long half life opioids.
As others have said, RLS usually happens suddenly for a reason. Blood loss, surgery, new medications.
It would appear you are predisposed to RLS and maybe the sertraline has tipped you over the edge.
So, see your GP, ask him to look at RLS-UK website.
Explain that Ropinirole is no longer first line treatment as it WILL cause worsening (augmentation) and you want to safely switch to trazodone for your anxiety/depression and raise your serum ferritin above 100 to relieve the symptoms.
In the meantime, you can ask for 30mg codeine OR pregabalin. Pregabalin is a sedating med that helps RLS AND anxiety, so you can start on 50mg and increase by 25mg every other day up to 150mg.
Just a question re your comments in 3. + your last para re pregabelin:
Is your thought that i can try sticking to taking pregabelin only at night…even while I’m incrementally increasing the dose?
Asking because am about to trial pregab v soon, and all my consultants + my GP are v open to individualised treatment because am in palliative care @ 70 & a complex case of overlapping v early onset comorbidities already under quite significant burden of systemic& topical pharma that each help loads with barely any neg effects.
Am under NHS in the U.K., so protocols differ a bit from USA (my immediate family are in philadelphia where I was born, so I follow USA health care quite closely)
For RLS, pregabalin only needs to be taken at night. It is sedating and can cause dizziness and falls, so taking itat night limits the side effects. The average dose for RLS is 150-200mg, the max dose is 450mg. Some people experience daytime RLS, and take daytime doses, but the overwhelming majority experience RLS in the evening and at night only ( unless they're on dopamine agonists and augmenting).
If you're taking pregabalin for other conditions, eg fibromyalgia, the dosing times will be different.
Thanks v much jools: that’s exactly what I need! Now you’ve explained, am suspecting my consultants are advising morning & evening doses because my radiculopathy & sural axonal peripheral neuropathy + small fibre neuropathy give me constant probs around the clock. But I’d v much like to try starting pregab just at bedtime, as I have so many chronic issues pregab may aggravate + a history of hypersensitivity to a long list of pharma. My doctors are all very cooperative, so I’m not anxious about negotiating dosage timing with them, but have extra confidence now thanks to you & others in this discussion
Start slowly. The starting dose is 50mg if aged above 70, 75mg otherwise. Increase by 25mg every few days up to 150mg and monitor.Side effects are dizziness, eye problems, water retention, increases appetite. Pregabalin takes around 3 weeks to take full effect and the side effects do reduce after 2 or 3 months.
If your doctors suggest a daytime dose for the neuropathy etc, monitor the daytime dose to minimise side effects.
Have you considered medical cannabis? It's really helpful for fibromyalgia, neuropathy etc.
I find it's the only thing that helps my MS neuropathy and spasms.
It's expensive, but I use it on an 'as needed' basis.
More thanks 🤗…you really know how individual these things tend to be. I’m finding my early onset of all the rare illness + now my age makes things even more so. But am now in palliative care, so feeling relatively safer
Finding this forum is giving me much better perspective on pregab for my collection of neuropathies inc RLS. Eg due to my long history of hyperreactions, Rheumatologist, neurologist & GP want me to start with 1/2 a 25mg tab morning + evening, & feel my way from there re incremental increases. Both want me to let them know when/how I increase & how I feel & whether any red flags start flying …eg here are 2 of my main issues:
- dizziness, because my Inner ear autoimmune neuropathy has given me persistent vertigo since my late 20s, which has been well controlled for years by daily long term prednisolone + mycophenolate
- bowel impactions ( mega ileum & colon) chronic intestinal (small & large) pseudo obstruction, due mainly to my hEDS & all the autoimmunity neuropathy paralysing my intestines. Which is why the medical cannabis experts I’ve consulted have urged me to avoid it…I’ve had to avoid all analgesics except paracetamol for years due history of opiate induced bowel obstructions. We have got me safe & happily on v low dose diazepam for the spine-related muscle spasms stuff though thank goodness
I hope they pregabalin helps, without intolerable side effects. I understand about the bowel issues. Your doctors seem to have considered all options.
Thanks! Hoping for the best but feeling cautious & very glad of this discussion including your help! My doctors know me well & have always helped enormously: transformed my life. But I’ve never met a perfect doc 😉 & none so far have mentioned ferritin levels…maybe because I need to put more emphasis on how much worse my RLS has become : when I’ve got so much neuropathy going on, I can forget to highlight one aspect during consultations…thanks to this post, I now feel more able to highlight my RLS in consults
Dear Lettucenotforget, You have had some really excellent advice from some of our forum "leaders" and therefore i won't say anything else except please do not take ropinirole. it was one of the drugs i was prescribed which together with rotigotine (both DAs) caused my severe augmentation. I am following the guidance of members such as Joolsg and Sue J to try get back to par.
Good luck and keep chatting and reading.
Davchar
Thank you for your message, I have refused to take ropinirole and have now been prescribed Gabapantin which I commenced last night. Managed to sleep until 4pm at which point the demons kicked in big time accompanied by involuntary 'jerks' throughout my body and cramp in my feet. Feeling so depressed, this is just relentless and debilitating. Not coping mentally, have another doc appointment on Saturday. Have you got any coping mechanisms you can suggest?Best wishes to you and thanks for reaching out to me.
This is good news. What dose did you start with? It's great that you got some relief immediately, but gabapentin can take a couple weeks to be fully effective. The starting dose is usually around 300 mg, but some docs start at 100 mg and work up slowly till you find the dose that works.
We want to know how you're doing.
Gabapentin is usually started at 100mg at night and increased by 100mg up to the average dose of 1200- 1500mg, taken in split doses of 600mg, 2 hour's apart. Avoid magnesium 3 hours before or after the gabapentin dose as it stops absorption.Gabapentin will take 3 weeks at full dose to be effective, so in the meantime, to help the symptoms, you could ask your GP for 30mg codeine or buy solpadeine max from the chemist. Use short term until the gabapentin starts to work.
Other things that might help are compression socks, massage gun, magnesium cream on legs, hot baths and showers and leg stretches and squats.
Dopamine is stored in muscles so any weight training, muscle building exercises will help.
Thank you so much Jools for the very helpful information, it is greatly appreciated. Do you advocate Magnesium supplements also? I do walk everyday as I have a dog and despite feeling exhausted am doing my best to continue. I also did squats and other mobility exercises regularly but right now I'm lacking motivation, energy and mental stability. My anxiety is in overdrive which is perpetuating the situation.
Magnesium glycinate at night helps many people but don't take within 3 hours of gabapentin, and start with a low dose.
I also am 75 but have had RLS my entire life which got worse over the years. A few years ago I tried different meds but within a week was worse and had to stop meds. I dread the night and the thought of getting into bed but find that the hottest shower I can stand will allow me 1-2 hours of sleep. Sometimes a 2nd shower will get me another hour. I've now managed to live with an average 3 hours and another1-2 hours sleep in the afternoon. It's not the best way to live but it allows me to survive
So sorry you have had to suffer this life changing affliction for so long. I am finding it both mentally and physically exhausting. I have now been prescribed Gabapentin after refusing Ropinarole and have just taken my first dose so will see how it goes. Hate the nights, it's so stressful not being able to sleep... it's like a form of torture! Best wishes to you and thanks for reaching out xx
Lettuce, have you switched out the sertraline for either trazodone or Wellbutrin? I’ll say to you what I do everyone else…you will not have peace until you’re off the SSRI.
lanie and Lettuce: neither of you have to suffer like this! Order some red vein Kratom powder online, or get in smoke shops if in the US. It stops RLS within minutes. Nothing is worth the kind of suffering you describe....use the Kratom until you figure out another solution with the help of this forum. It totally saved me for a period of time, no doubt. If you don't know where to get it, feel free to ask. Hang in-you do NOT have to live like this! Big hugs.
Hi Teddi, thanks for your message, I live in the UK so do you know where can I source some Kratom? Thanks in advance.
So sorry for delay as I know you need to order asap. UK folks use kraatje.eu and it comes as "tea." GaryHB in the UK orders it from kratom.org. Any red strain, such as red borneo, works. Look for small sample options, too. Please let me know how you're doing-you're going to have such great relief soon! Then keep trying to find other solutions.
Thanks Teddi for the info, much appreciated. Who is Gary HB in the UK?
A member on our forum-you can look him up.
Dear Lettucenotforget,
I think that Joolsg and Sue J might better help than myself but as you have not taken any DAs you are not suffering from augmentation as Gabapentin i understand does not cause augmentation (ie a worsening of RLS basically). i suspect that you need to increase the dose of gabapentin to get you through the night but others on this forum better experienced than myself on this.
As far as getting relief from the RLS pain there doesn't seem to be any other remedy than to get up and exercise even if only walking and stretching but again Joolsg might advise further.
As far as your GP appointment goes you have to be fairly strong with him/her as their first response is the NICE protocol which is very "thin" to say the least. My GP still prescribing DAs despite my very strong approach and he refuses to listen to US advice (Mayo etc)
Good look and remember there are lots of us in a similar situation at 4am!
Kind regards
Davchar
Thanks davchar, I can be quite firm and intend to be my own advocate in dealing with GPs, if and when you can get an appt. It's good to have such amazing support on here and am very grateful for it.
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