Just me!!!

[Noneoftheabove]

hi, I’m fairly new to this, I mean I don’t use social media and the like, infact I’m quite a recluse to be honest!!

But!!

I’m suffering more and more with this awful condition.. and I need some support, hence I’ve landed and here I am.

I first encountered RLS when I was in my early 20’s it only lasted one night, but I was stood up all night long!! I saw a GP who did a urine test and said there was somat there but not sure what???? WHAT??????!!!!!!

Fast forward.. the pandemic, working from home and it was back!!

I suffered until it got too bad, but I’m fact it was nothing compared to recent!!

I went to my GP, who just prescribed me Pramipexole!!!’ I thunk, thinking back,,it was me that told him what I had!!!!

The tablets worked for a bit on and off, more on than off, but on a return visit to the GP, on a separate issue, I mentioned that j was still suffering on and off despite the tablets..

Back came the reply.. “well take two tablets”

Since then things have gone down hill at an ever increasing speed.. two tablets, quite often, constant snacking to occupy the brain , walking about most of the night. Which is fun cos I live in a very confined space!!

I’ve also realised I have PLMD, self diagnosed, as I caught feet going ten to the dozen when I woke up, and it’s happening now every night!!

Peeing is extremely painful.. a shooting pain down my leg just before the flow begins!!

I’ve been for blood tests and they came back rather too quickly, saying I was completely normal!! “ hang on... me normal?? That’s very worrying, even the few friends I have would disagree!!

I’m due a telephone conversation with my GP on Thursday 1st September.. I want to come off pramipexole!!

Any advice of ammunition you can provide me with?

As I type, I’m getting pains in my left arm,, it’s 3:15 in the afternoon, that’s somat new... it’s getting worse!!

Big hugs to ya!!

[SueJohnson]

PLMD is treated the same way as RLS. I don't know about your problem with peeing. To come off pramipexole, reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your transferrin saturation is OK, then if your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps with its absorption. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. Dopamine agonists like pramipexole are no longer the first line treatment for RLS. Gabapentin is. The beginning dose is usually 300 mg gabapentin. Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. 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. Most of the side effects of gabapentin 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 daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. 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 as yours obviously isn't or s/he would never have prescribed a dopamine agonist at

Https://mayoclinicproceedings.org/a...

[Noneoftheabove in reply to SueJohnson]

Thank you Sue for such a detailed reply..

The problem with peeing is a shooting pain, like that experienced with the shooting pain and jolting from RLS. Might be unrelated!!

Thank you Sue

Keep safe n well.

[Madlegs1 in reply to Noneoftheabove]

The peeing pain is more likely to be something like cysticis (sp?). Certainly not RLS.

Your earliest experience of rls is definitely a result of a trigger .

Many foods, drinks and medications trigger rls in people.

My own triggers (after years of keeping tabs on intake) are rising agents _bickies, alcohol, artificial sweeteners, salt, sulphates-- think all those lovely Mediterranean meats, msg as in most gravies, sauces, food flavour enhancers and so on and on and on.

Now, you are in a whole new ball game having been put on DAs and will have to go through Sue's instructions.

Keep an eye on your triggers/ allergies and good luck.

[Noneoftheabove in reply to SueJohnson]

Hi Sue..

How do I manage the climb down on the Pramipexole? I am supposed to take one 0.88 mg tablet per night, do I do every other night? Sorry to be thick here!!

[SueJohnson in reply to Noneoftheabove]

Since you only have .88 tablets, you will have to cut them in quarters as best you can and reduce by 1/4 a tablet every two weeks or so. Or when you talk to your doctor ask him/her for the .125 mg tablets.

[Noneoftheabove in reply to SueJohnson]

Thank you Sue.. much appreciated

[SueJohnson in reply to Noneoftheabove]

ELisse2 is right. I am in the US and not familiar with UK medicines. I assume as she said it is .088 and that is the same as the .125 that I posted, so no need to cut any tablets. Instead just reduce by 1 tablet every 2 weeks.

[Noneoftheabove in reply to SueJohnson]

Yup.. my box has all the numbers mentioned👍.. again.. I’m being incredibly thick here.. one tablet to be reduced by one tablet every 2 weeks. So I gradually miss out a tablet on one of the nights, then two of the nights etc etc!! Have I got that right? Gosh I’m sorry for being so stupid here!!🤓

[SueJohnson in reply to Noneoftheabove]

Since you are only taking one tablet, basically after 2 weeks stop taking any. If that produces really bad symptoms, go back on the 1 tablet for a few days and then cut it in half and reduce by that 1/2 tablet and after your symptoms settle in about two weeks stop taking anything. When you talk to your doctor today, see if he will prescribe a low dose opioid to take temporarily to help you through this.

[SueJohnson in reply to Noneoftheabove]

Whoops - I see I am too late - that you already had your call with the doctor. I'm glad you were able to get the prescription for gabapentin. And Hopefully improving your ferritin will help.

[Noneoftheabove in reply to SueJohnson]

Sue, and everyone on here.. a “HUGE” thank you 🌟🌟🌟🌟🌟

[Noneoftheabove in reply to SueJohnson]

Good morning Sue..

I am currently on two 20mg iron tablets daily.. I can take a maximum of three a day..

Gabapentin!! I’m not sure when to take these as the GP has only provided the following ...

One tablet for three days, then one tablet twice a day for three days, then one tablet three times a day..

They are 300mg capsules..

Can I ask your advice please?

I.e.. Do I take only in the evening! I don’t get RLS during the day..

Getting very confused.. I’m still on pramipexole at present..

Thank you Sue

[Noneoftheabove in reply to Noneoftheabove]

I thunk I’m going to take two tablets 2 hours before bed, as even with both sets of tablets I’m getting RLS.. and I’ve been taking a Gabapentin in the morning and evening.. but not sure how to add the third tablet?

That’s all for now

Thank you Sue..

[SueJohnson in reply to Noneoftheabove]

You only need to take them in the evening since you don't have problems during the day. Take the 2 tablets 2 hours before bed as you said, then take the 3rd tablet 4 hours before bed as it is not well absorbed above 600 mg. Then wait for 3 weeks as it takes that long to be fully effective and it won't be until you are off the pramipexole for a few weeks. Then if this doesn't relieve your symptoms, ask your doctor for 100 mg capsules and add 100 mg to the 4 hour before bed dose every couple of days. If you need more than 1200 mg total, add the additional amount 6 hours before bedtime.

[Noneoftheabove in reply to SueJohnson]

Bless you Sue.. my Oracle 👍🌟🌟🌟🌟🌟

[Noneoftheabove in reply to SueJohnson]

PS... On the Pramipexole front.. I’ve only got 9 more days supply unless I reorder? But my GP might be confused if I do, as I told him I wanted to come off them.. COLD turkey of sorts?

[SueJohnson in reply to Noneoftheabove]

You can try stopping them tonight. If after 2 weeks your symptoms haven't settled down, take a half tablet. Since you have 9 tablets left, that should last you 18 days, if after 14 days your symptoms haven't settled down reorder them. If you have have a refill left, you GP won't even know. If not, if he asks you can explain what you are doing.

[Noneoftheabove in reply to SueJohnson]

😃👍

[Noneoftheabove in reply to SueJohnson]

I don’t think I can cope with this.. one Pramipexole against 1200mg of Gabapentin.. I’ve taken 3 iron tablets and 3 gabapentin and a Pramipexole and my legs are worse than ever. Now in my left arm..

[SueJohnson in reply to Noneoftheabove]

Ask your doctor foe a low dose opioid to help you come off the pramipexole. Print out the section of the Mayo Clinic Updated algorithm on RLS (google it) that shows that this is advised and mail it to him/her.

[SueJohnson in reply to Noneoftheabove]

Here is the link Https://mayoclinicproceedings.org/a...

[Noneoftheabove in reply to SueJohnson]

thank you Sue..

I think am going back to my GP, I cannot stand 3 weeks of this awful worsening RLS whilst the medication reaches its maximum, and may prevent RLS, I’m feeling incredibly dizzy with these Gabapentin with blurred vision and cannot use my modes of transport... the options.. increase the Pramipexole dose.. again..

Sorry Sue.. and thank you...

Take care and keep safe.

[Noneoftheabove in reply to SueJohnson]

Question before I “go dark”... does Gabapentin stop RLS or just mask the pain and disconfort?

[SueJohnson in reply to Noneoftheabove]

It stops the symptoms so you no longer feel you have RLS. If the dizziness and blurred vision don't stop in a few weeks, you might want switch to pregabalin. It is basically the same drug except you don't have to divide the doses and although generally has the same side effects, some people find that the side effects that bother them on on do not bother them on the other. To switch, one divides the gabapentin dose by 6 to get the pregabalin dose.

[Noneoftheabove in reply to SueJohnson]

I’ll need to speak with my GP.. I cannot travel to work at the moment. It’s not safe to do so!! Too dizzy/ blurred vision.. I think I’m going to stick with Pramipexole.. but at a higher dose!!

I don’t have a high tolerance threshold!!

All the best to you Sue and thank you.

[Noneoftheabove in reply to SueJohnson]

the other thing before I go.. apart from the dizziness and blurred vision, they are not stopping the RLS symptoms at all.. they are worse than ever.. that’s why I’m still going to have to take both. Which according to the web I should NOT be doing!!

take care Sue.. I won’t be posting anything else..

Bless you

[Noneoftheabove in reply to Noneoftheabove]

ps.. no reflection on you Sue.. you’ve been amazing.. truly amazing..

Thank you 👍🌟🌟🌟🌟🌟

[Noneoftheabove in reply to SueJohnson]

ps.. no reflection on you Sue.. you’ve been amazing.. truly amazing..Thank you 👍🌟🌟🌟🌟🌟

[Noneoftheabove in reply to SueJohnson]

hello Sue, I said I would not post anymore messages, but just to let you know.. I’m now taking 1600!mg of gabapentin.. 3 iron tablets and still having to take Pramipexole as well.. I’m in worse pain than ever and it’s kicking in earlier than ever in the evening.. it seems the more I take the more RLS fights back!!! No reply please!!!!

[Noneoftheabove in reply to SueJohnson]

hello Sue, I trust you are well..

I’ve persevered with the Gabapentin and am on 1600mg as well as 3 iron tablets s day.. I have developed bruising to my arms.. reading up it says I need to tell my GP straight away.. have you had people contact you with this side effect ?

[SueJohnson in reply to Noneoftheabove]

It is considered a serious side effect although you are the first that has mentioned this. You might want to try switching to pregabalin. Although they are basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose. But ask your doctor about this. Again, you are not gaining anything by taking 3 iron tablets at day. This is the source for that hopkinsmedicine.org/neurolo...

[Noneoftheabove in reply to SueJohnson]

thank you for your reply Sue, despite being on 1600mg for some time, I am still getting pains from RLS, dare not increase the dose anymore !! It’s just not stopping my RLS, sorry to say!!

[SueJohnson in reply to Noneoftheabove]

If you decide to come off it, it is important to do so very slowly or you will have withdrawal effects. If you do so slowly enough you won't have any.

[Noneoftheabove in reply to SueJohnson]

thank you Sue, but then what? If you say Pregabalin is the same drug, is that going to work? Or give me the same side effects.. back to Pramipexole ? I really thought Gabapentin was this fix all solution to RLS. I feel completely lost!! And very worried for my future.. I plan to be tested for Parkinson’s when I have my iron count checked.. sorry Sue...

[SueJohnson in reply to Noneoftheabove]

Do not go back to pramipexole. Pregabalin might or might not give you the same side effects. If not, you could then increase it by 25 mg every couple of days until you find a dose that works for you. If not, come off it slowly as I mentioned. Then you could try a low dose opioid. This is your best bet. If you need to convince your doctor as many are reluctant to prescribe it, print out the section of the Mayo Clinic Updated Algorithm on RLS on opioids to show your doctor at Https://mayoclinicproceedings.org/a... Other things that have worked for many are Delta8, kratom, THC, CBD gummies. I'm no expert on these so you would want to post on the forum to ask about these. Another possibility is dipyridamole. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...

[SueJohnson in reply to Noneoftheabove]

On the iron - be sure to take your tablets all at one time, preferably in the evening as iron is absorbed better then. They need to be at least 24 hours apart so best to take at the same time each day.

[Noneoftheabove in reply to SueJohnson]

Bless you Sue 👍.. thank you 😃

[Noneoftheabove in reply to SueJohnson]

hi Sue.. sorry... me again.. I just read that taking iron tablets every other day makes them more effective.. not sure where I read this? It just popped up on a google search.. thot I’d run it past you!! My Oracle...👍

[SueJohnson in reply to Noneoftheabove]

It's generally said that way so that one won't take them every day but at possibly different times since they need to be 24 hours apart.

[Hidden in reply to Noneoftheabove]

I take it the pramipexole dose is 0.088mgs. ? If so they are the same as Sue has said .125mgs. It should say on your box. It does on my box. They are pesky pills to cut into 1/4’s as they are so small. Use a pill cutter might help. 😊

[Noneoftheabove in reply to Hidden]

Eh up.. I’ve used a vegetable knife.. worked more or less 👍

[SueJohnson in reply to Hidden]

Thank you. Since I am in the US, I didn't realize this.

[Noneoftheabove]

Hmmmmmm!!! I know so!!!.. but why when its zinging away, does a bowl of cereal stop it.. and allow me to go back to sleep..

[Munroist in reply to Noneoftheabove]

I think the cereal works because of a combination of things. The process of getting up and moving around, making and eating a bowl of cereal takes some time during which you will have been moving a reasonable amount and movement is what generally stops RLS, for a short time anyway. The more you move the the longer the effect. I also believe there is a pleasure effect which may increase your dopamine very slightly along with the movement and as low dopamine levels are contributors to RLS that might give you some temporary relief as well. Lastly some people just find destraction helps which may include an element of the previous two items as well.

[Noneoftheabove in reply to Munroist]

I thunk that’s all true.. but I cannot move very far to get my cereal fix cos I live in a very confined space!!!😆

[Hidden]

That’s an interesting one on the cereal helping. A lot of us find drinking coffee can stop the RLS and let us sleep.

[Noneoftheabove in reply to Hidden]

I was led to believe that caffeine is the enemy, along with chocolate? Fried food, sugary stuff, and cheese.. now I find a great hunk of cheese settles the brain!! I sleep like a baby!!

[ChrisColumbus in reply to Noneoftheabove]

Caffeine is a trigger for some and a panacea for others: go figure!

[Joolsg]

I still find it terrifying that UK GPs are doling out Pramipexole as late as 2020 and telling patients to increase the dose.Sadly the NHS and NICE CKS guidelines are out of date and GPs know zero about RLS, the meds or the most common complication of Pramipexole which is increase in severity of RLS.

Follow Sue's advice, research everything you can as doctors aren't taught anything about the disease.

Your iron won't be 'normal' as we need much higher figures. Serum ferritin needs to be above 100, preferably 200.

The GP should have asked for all meds you're taking, including OTC like cough and cold meds.

Sedating anti histamines, anti depressants, statins, beta blockers and PPI meds all worsen RLS.

Get off Pramipexole, get your serum ferritin above recommended levels, eliminate any meds that are worsening RLS and you might be able to resolve the RLS without further meds.

Pregabalin and gabapentin are now first line meds for RLS as per the Mayo algorithm.

Show a copy to your GP as we need them to be aware of the latest expert advice.

[Noneoftheabove in reply to Joolsg]

I have a telephone appointment at 8:40 this morning!!! I’ll report back my findings 👍...

I sent the link to my GP.. just had my telephone call.. Gabapentin prescription sent to the pharmacy.. 😃.. going onto Iron supplements. My level was 71!!!..

I’ll keep y’all posted 👍

[TeddiJ]

Hi. Order some red vein kratom powder, or hirsuta powder, to get you through the bad nights or until you figure out your meds. They stop the rls within minutes. As I always say, Joolsg says to order it as tea online (from Scotland?), if you live in the UK.

[Noneoftheabove]

?????. Sorry you lost me????

[TeddiJ in reply to Noneoftheabove]

hi-are you talking to me? if so, just enter "kratom" into the searchbar and you'll see how much it helps people who are suffering.