Feel like I'm going insane, struggling to cope

[Cazzi129]

Anyone else feel ilke they are going insane in the middle ofthe night when RLS is in full swing and you have tried everything? Then your arms decide to join in with the party.... Take your gabapentin, massage your legs, put feet in cold water as they feel 100 degrees and throb intensely, run your magnisum gel in, stretch and do palates moves but in end cry, thrash around and punch yourself in said arm's and legs in desperate bid to help

[SueJohnson]

How much gabapentin are you taking and at what times?

[Cazzi129 in reply to SueJohnson]

Hi I had been taking 300mg nightly but it doesn't seem to be doing anything, have ended up taking another 300mg early hours.

[SueJohnson in reply to Cazzi129]

I notice you take Citalopram. That is known to make RLS worse. I suggest you switch to buspar which is safe for RLS and actually helps RLS.

[SueJohnson in reply to Cazzi129]

300 mg of gabapentin is a very low dose so it is no wonder it is not working. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." Ask your doctor for 100 mg capsules and 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. If you take magnesium, take it at least 3 hours before gabapentin as it interferes with the absorption.of gabapentin. When you see your doctor ask 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 as that is 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 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 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 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. 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 interferes with the absorption of iron. 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.

[SueJohnson in reply to Cazzi129]

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know about it including the latest treatment and refer your doctor to it if needed at

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

[Joolsg]

What medications are you taking, including OTC cough, cold, allergy meds?What is your serum ferritin level from blood tests?

If you tell us more info, we should be able to help better.

[Cazzi129]

Hi thank you for replying. I take 30mg Citalopram for anxiety. Also take 300mg of gabapentin nightly that doesn't seem to be helping. I don't take anything else. Unsure on serum ferritin levels never heard of this. I did have a lot of blood tests last year and was under hospital as it showed I had markers for Lupus. On further examination and more bloods and tests this year they said that was OK. I got diagnosed with raynards though and had some nerve conduction tests that showed slight issues with my left calf. This runs in line with a bulging disc L4/L5 that often presses on S1 nerve that I have and have been having epidural nerve injections and steroid injections for. Have suffered with this and back pain from being about 17 years old, I got knocked over when I was 15 that caused this weakness in my L4 disc. More recently though my main issue is the RLS symptoms. Sorry waffled on loads... Thank u for replying

[Joolsg in reply to Cazzi129]

Sorry to hear of your back issues and the accident.Citalopram causes RLS. When did you start taking it?All SSRI, SNRI & tricyclical anti depressants cause or worsen RLS. However, treating depression has to take priority but you need to consider how to lessen the RLS.

First, ask if safe anti depressants are available and will help. Trazodone and wellbutrin are both safe and do not worsen RLS. If you have anxiety, gabapentin should help that or clonazepam which helps both anxiety and RLS.

Then get full panel fasting blood test first thing in the morning. Serum ferritin must be above 100, preferably 200 for RLS patients. Serum iron should be above 60.

Raising levels by oral pills takes months so iron infusions are the best option but difficult to obtain here in the UK. I know of several UK hospitals that have agreed to them. Your doctors will say bloods are normal but for RLS patients, 'normal' levels are insufficient

Epidural injections and steroids can also trigger RLS and I would suggest you apply for medical cannabis to relieve the nerve and back pain caused by the accident. Did the injections make the RLS worse?The medical cannabis clinic offers consultations for £49 & will prescribe cannabis for your pain. Sadly, not on the NHS. Cannabis is brilliant for nerve pain. I use it for my MS nerve pain.

Finally, 300mg gabapentin is way too low for RLS. Average doses are 1500- 1800mg. Doses above 600mg are poorly absorbed so take in split doses 2 hour's apart and avoid magnesium 2 hours either side of a dose as magnesium stops absorption of gabapentin. If the RLS is mainly in the evening and night, only take the gabapentin at night.

So, first look at alternative anti depressants, next get Serum ferritin levels up and in the meantime slowly increase gabapentin.

And consider medical cannabis for your nerve back pain instead of epidurals and steroids.

[Cazzi129 in reply to Joolsg]

Wow that's so much info and througher thank you. I have made so many notes. I have been on citalopram gosh years now. Will speak to my doctor Thank you.

[SueJohnson in reply to Joolsg]

Magnesium should be stopped before taking gabapentin as you mentioned, but it shouldn't be taken after you take gabapentin either as gabapentin's peak plasma level is 3 to 4 hours after it is taken. And by that time, I would hope the person is asleep. 😀

[Cazzi129 in reply to SueJohnson]

I usually take the gabapentin as am going to bed so if it takes a while to work no wonder it doesn't work straight away!

[SueJohnson in reply to Cazzi129]

Take it 1 to 2 hours before you go to bed.

[TeddiJ]

So sorry and we all feel you! I would not have made it without kratom and/or hirsuta. You can order some as tea in the UK-someone once posted.

It is a powder that kills the rls in minutes so that you can get some sleep. Helps hugely with the withdrawal from PRAM. Not an ideal long term solution, although it is what I am currently using.

Dropping the bad drugs, taking much more gabapentin, getting your ferritin up, along with some kratom or hirsuta-will help you a ton during this phase.

You just need sleep right now, more than anything, so make that a priority. Hang in!

[Steg12]

Yes my legs just will not stop. My ankles just feel like they are on fire and my shin bones feel like they are going to explode I cannot touch my legs when bad. Is this the same for anyone else or am I dreaming.Thanks

[DataRN]

Been there Cazzi129 I think the majority of us on this site have been where you are. Yea, can make you feel nuts. Hang in there! I see you have already been given some good advice on here. But keep in mind that RLS is an individual journey. There is no cure, there is no singular cause and there is no treatment that works for everyone. It’s complex and poorly understood by most doctors. The BEST thing you can do is arm yourself with knowledge- just like you are doing now. I highly recommend joining the RLS Foundation RLS.org As a member of the foundation, along with all of the up to date research and access to professional information from RLS experts you will have access to documents you can provide to doctors. This is how all of us can help improve RLS care. Best of luck to you and never feel alone in this.

[Cazzi129 in reply to DataRN]

Thank you so very very much

[Bganim1947]

Yes!!! Then I discovered Magnilife’s Relaxing Leg Cream, Night time—Amazon or some pharmacies. I’ve been using it for 4 years. It stops RLS in its tracks. As soon as I start to feel that indescribable feeling start in one or both legs (often brought on by swelling in my ankles or knees or anxiety), I get up and liberally apply this cream from ankles to knee—it takes on my a few minutes to dry, so don’t put socks or pants over it until completely dry to touch. Then viola, my RLS is FOR THE NIGHT OR NEXT SEVERAL HOURS! This stuff works every time. I also take 100 mgs of Tramadol 3x/day and 100mgs of Pregabalin 3x/day. That combo taken faithfully has kept my severe legs, full torso & arms peaceful except on those nights when I’ve ove worked or played my aging ankles and/or legs until they get swollen. Ice packs also help as a preventative.

I am no longer insane.

[Namu]

I second Joolsg s comment above re: medical marijuana. My RLS turned refractory since about 5 years ago. To make a long story short, I was prescribed the normal dopamine agonists, and after augmentation and accidents due to drowsiness, I stopped all RLS medication and just took the pain, as they say, and the sleepless nights, and just take catnaps during the day when I am too tired. Fortunately for me that I am retired so this is possible. I was in Canada recently where cannabis is legal. I stayed stoned most of the time. The RLS is still there, but the euphoria from pot masks the discomfort of RLS and in the evening I consumed the INDICA strain, and it relaxed me, and put me to sleep. Although I still woke up at night, but less infrequently and was able to function more or less normally with daytime tasks when you have enough sleep, and with a big grin on my face. Try it, if you can persuade your doctor to prescribe it. Otherwise, hop on over to Amsterdam every now and then, and at least blow off some steam.

[Heideinthewild]

before joining this group and forum I had no idea other people punched themselves for relief : ( I keep a yardstick by my bed and beat my shin area with it to relieve the pain so I can reach them while lying down. Another trick I learned is to lay on the bed with my feet on the walls with my heals turn in to stretch my anterior tibialis part of my shin where the pain is the worst. Its hard to stretch that area with regular stretches. I fall asleep sometimes with my legs up on the wall like that from being so exhausted. I find heat helps alot and use heat wraps that have a battery pack so I can move my legs all around and they wont fall off - that buys me about 15 minutes of relief until the battery needs recharging.