Back issues causing rls

[marigold60]

I've had rls for a good number of years. I've been on pramipexole, come off it and gone onto gabapentin. I've never thought my rls was caused by lack of iron but I've often thought it was coming from my back. Same symptoms just different cause. I was on 400 mg gabapentin, highest 800mg. I'm now reducing this and find I can without any real problems. I'm now on 200mg taken around 6pm. The only changes I've made is going up the gym plus changing how I sit on the sofa. I now make sure I push a cushion into the small of my back and sit more upright. What my question is does anyone feel that their rls is connected to back problems and by helping their back they've eliminated their rls?

[ChrisColumbus]

There does seem to be a link for some people. For example, the Rowe Neurology Institute in Kansas states "we did find a striking relationship between Restless Legs type movements (a sleep disorder) and back problems. Finding this connection between Restless Leg Syndrome and back pain is a key discovery toward finding relief for these patients." They relate this to lumbar radiculopathy/sciatica.

neurokc.com/sleep-article/r...

[marigold60 in reply to ChrisColumbus]

Thanks for the info. I just wished I'd explored all the possible causes before I saw a neurologist. He just put me on a new medication when I told him I thought my dad may have had it. Once he thought it was probably an hereditary condition he didn't bother to investigate further

[txgoldenmom in reply to ChrisColumbus]

🤦‍♀️

[Joolsg]

Yes. Many report RLS with back issues and often it can be sorted with physiotherapy or osteopathy.RLS also happens after spinal, hip or knee operations.

I'm convinced there are several separate causes. It's not just brain iron deficiency.

Mine is caused by spinal and brain scarring from my MS.

I'm delighted you've found the cause.

[howlinwoolf]

I actually think my RLS is tied to my the fact that my sacrum is hypermobile (I have hEDS which makes even fused joints more mobile than they should be). That causes a variety of neuropathic pain and sensations of restlessness. I think this contributes to the RLS. I'm not sure if it causes it outright.

I was on gabapentin 3600mg and had to get off of it. It was hell to titrate from that. I'm glad the titration is going well for you!

But yes, I do think a back issue, especially in sacrum can cause neuropathy that resembles RLS.

[marigold60 in reply to howlinwoolf]

I'm lucky I was only on a very low dose to begin with

[txgoldenmom in reply to howlinwoolf]

Here's a tie in with hEDS. This is the first time anyone has posted that. I'll add that prefer to my list. Everything (IBS, hEDS, Chronic Pain, Fibromyalgia, Sjogren's, Osteoporosis, Osteoarthritis...) ties together. Once one domino falls, the chain reaction ensues. 😬

[VENEER]

Hi, Sadley I have done the same when sitting on my sofa but to no real benefit and I do have a bad back, I'm taking 2mg of Ropinorole at 4.30pm and another 2mg at 8.30 which does seem to reduce my symptoms, however if I'm not being active during the day and leading up to 4.30 my Rls would be constant and I'm now wanting to know what can be done to reduce the extent of day long symptoms.

[SueJohnson in reply to VENEER]

Have you always had day long symptoms on ropinirole?

[Joolsg in reply to VENEER]

Day long symptoms shouldn't be happening on Ropinirole. As Sue asks, did you always have this? Do read the pinned post on Augmentation. Ropinirole is brilliant at first until it stops working and turns on you, making the RLS worse.

[VENEER in reply to Joolsg]

I've had it for so long I carn't remember. At first I had a combination of Ropi and Gabapentin but stopped the pentine as I new some of the serious side effects can cause a low labedo which I thought I was suffering from so my GP put my Ropin to a higher strength, before he increased the dose I could not tolerate the patches as my skin was reacting with an allergic reaction. Hope this helps.... Just to add further my Father suffered RLs but without medication as he had no faith in doctors!!

[Joolsg in reply to VENEER]

What I was trying to say is that you shouldn't have all day RLS on Ropinirole. Did it cover all your symptoms at one point?

[VENEER in reply to Joolsg]

No.

[SueJohnson in reply to VENEER]

You are augmenting and need to come off the ropinirole. To come off ropinirole, reduce by .25 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. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. You had low labido on gabapentin, but you might want to try 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. The beginning dose is usually75 mg pregabalin. 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 25 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. Most of the side effects of gabapentin or 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. If you take magnesium take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin daily." 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 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 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. 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...

[VENEER in reply to SueJohnson]

Thank you Sue for your time in responding, most helpful info.I've been interested to learn if Buprenorine has a much better effect with less side effects?

[SueJohnson in reply to VENEER]

A lot of people of this forum take it and like it. The main disadvantage is it can cause problems with your teeth. You can use the search at the top for Buprenorphine to see posts on it.

[VENEER in reply to SueJohnson]

Okay I have had a look how do I approach my GP to get me on this ? I'm currently under Dr Hall of the Leicester General Hospital.

[SueJohnson in reply to VENEER]

I would just ask. If he objects to prescribing opioids, print out the section of the Mayo Clinic Updated Algorithm on RLS on opioids to show him at Https://mayoclinicproceedings.org/a...

[VENEER in reply to SueJohnson]

The link does not show other than an error message.

[SueJohnson in reply to VENEER]

Strange - I just tried it and had no problems. Google Mayo Clinic Updated Algorithm on RLS

[VENEER in reply to SueJohnson]

Hi Sue, I recently had a ferritin blood test as I was thinking my levels were low, however the results have proven to be normal at 60? I've ask to speak with a doctor to give a break down to understand waht that actually means or can you advise on what I need to know please.

Kindest regards

Kered Winder

[SueJohnson in reply to VENEER]

60 is normal for other folks but not for those of us with RLS. You want it to be over 100. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Take 325 mg of ferrous sulfate or 25 mg of iron bisglycinate 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 or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. Ferrous sulfate is cheaper and for most people does not cause constipation but iron bisglycinate is much less likely to. If you take magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron or if you do take it in the morning and your iron at night. Also antacids interfere with its absorption. Take them at least 4 hours before or 2 hours after taking your iron tablets. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months .

[VENEER in reply to SueJohnson]

Thank you so much.

[Munroist]

in my case I had a back problem where a disc in the lower spine bulged and touched and aggravated the nerve resulting initially in painful, but not long-lasting sciatica type systems which were then followed by years of variable discomfort and odd sensations such toes tingling, muscles twitching and excessive nerve sensitivity. I was told my nerves had basically been injured and went on high alert and as they healed they never quite went back to normal, and the discomfort was basically neuropathic pain I.e. there was no longer an injury but the nerves were now over reporting. I know there has been a significant change in what my nerves tell me and that they are oversensitised and I believe it is that over sensitisation that combined with an existing RLS condition to make it significantly worse. I suspect I had PLMD from an early age, and I only really know that from one or two occasions where it woke me up where other people told me that I was “cycling” in my sleep. However it didn’t change until my mid 50s and the back problems when it suddenly got a lot worse and changed into RLS with symptoms early evening and through most nights to 4 or 5 am. Unfortunately I don’t seem to be able to reduce the nerve sensitivity (although I can definitely make it worse if I’m careless with my back).

[AmyMac5]

After many years of sleepless nights my RLS is well controlled by codeine at bedtime and, thanks to advice on here, getting my ferritin level up from 55 to over 120 and continuing to take gentle iron. However, I still have the occasional night or two where it will start up when I settle down to sleep. I've realised that this only happens when I've got a niggly, sore lower back and it's always in my right leg. My 'inherited' RLS is always in the left leg. Took me a while to figure out this simple relationship but it's pretty consistent in tying right leg RLS to back pain.

[marigold60 in reply to AmyMac5]

Mine tended to be in my right leg too. I'm realising it was probably the way I used to sprawl on the sofa. I do take co codamol before sleep which helps with back pain at the same time I'm working on trying to strengthen my back. I did try at one time increasing iron as it always used to be quite low but it never made any real difference to rls symptoms

[Hidden in reply to AmyMac5]

Amy, when you feel that niggle try popping an extra Gentle Iron capsule. Works for me!

[AmyMac5 in reply to Hidden]

I'll give it a go. My first step is to put on a compression stocking (a well worn one that isn't too tight) and pull the hot water bottle up from down the bed somewhere to my back. I don't have any real back problems and I never have the chance to sit for long but at 70 the creaky bits remind me that I'm no spring chicken any more🙁

[kcraig]

I think mine is. Dr. says no. BUT..I was on Ropierole for a few years with limited results. If I stand or sit with my back straight and knees bent 90 degrees, I never have a episode. But if I sit back or recline on the couch, or lie down, BAM! here we go! Most info on RLS says it's caused by a Dopamine deficiency. What does the position of my spine have to do with Dopamine level?? I also have a lot of back pain. Another Dr, tried me on 5mg Methadone and I haven't had an episode since! About 5 months!

[marigold60 in reply to kcraig]

Glad you've found something that works, It seems to be pretty hard to get answers and find individual help. As you say there are certain ideas out there but we're all different and what works for one won't necessarily work for someone else

[MissDem]

Hi Marigold, I was paralysed (feet to trunk, thankfully it was caught before it had got to the lungs) ) with GBS in Feb 2022. I have had to learn to walk again and regain bladder control. When all the nerves were coming back to play (bladder, breathing, legs etc) I had restless legs and numb areas in various parts. Nerves in my rectum came back three days ago. I have RLS day and night. It has been worse while I could not walk . I tried gaba but came off of it and have Clonzepan at night 0.5. I have checked my iron but it is the B vits that help the most. I make sure I walk up to 4000*5000 steps a day and when I have tired the legs I sleep better. Sugar / carbs have to be low and I have found the more hydrated I am the better the sleep. I also take D3 and K2. Hope this helps. I beleive RLS is down to the myelin sheath and the more it can be rebuilt with high dose of B vits the more I see improvement. Currently, walk with walking stick and the zimmer & wheelchair collect dust!

[marigold60 in reply to MissDem]

You certainly have had a horrible time, glad you are making a recovery. Food for thought too especially about supplements.

[MissDem in reply to marigold60]

Thank you. As ICU / MRI found two lesions in my spine and I have had RLS since the nerves came back (in weird ways - my legs are not even to feel) I think in my case it has a lot to do with the back. After all everything stems from the spine. . Diet change and high B vits seem to have helped me. Plus walking the legs (even at 2am / 3am with a Zimmer frame) to get them tired. When I compained about RLS - my specialist said that's what we want not numbness and it means the nerves are building connections. I wish you well.

[txgoldenmom in reply to MissDem]

So I’m not crazy I’m getting up and moving/walking because of RLS, thank goodness. I walk until it settles.

I dislike the feeling of nerve regeneration immensely. I never thought of RLS in that perspective. Wonder why some have RLS if they have had obvious damage or surgery. 🤔

[MissDem in reply to txgoldenmom]

You are not crazy if it works for you. I have been up at all hours of the night on the zimmer-frame walking around the lounge. I also have a pedometer (an cheap clip on one) and I make sure I do 4-5000 steps a day to have a better night's sleep. Its amazing how few steps you might do through the day and the pedometer makes me reach my goal. I even try to dance a little. Just a few songs. It won't work for all but if it works for you, that's great. I always remember my first attempt to even get out of bed with nurses, to a chair two feet away - every nerve was screaming and I was so dizzy. One year next week and I was dancing yesterday. God bless and thank God for everything. As my specialist says - keep moving, keep up the Vit Bs and keep eating the fats. Good luck.

[SueJohnson in reply to MissDem]

How much gabapentin were you on and why did you come off it?

[MissDem in reply to SueJohnson]

I was given 300mg twice a day once off IV steroids in ICU. After a few days I had the MS hug (without having MS) - my ribs felt like they belonged to an 8 year old and I was slightly hallucinating and finding it hard to breathe - I was also high. The gaba was dropped immediately. The hopsital was surprised at this but as soon as I was off I was fine. I have wanted to try again to ease the RLS but not at the expense of my breathing.

[SueJohnson in reply to MissDem]

Wow - no wonder you stopped. You might want to try 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.

[MissDem in reply to SueJohnson]

Thanks for letting me know.

[SueJohnson in reply to MissDem]

You say you checked your iron - what was your ferritin? Often that is not checked and what is OK for most folks is not OK for those of us with RLS.

[MissDem in reply to SueJohnson]

I honestly would have to try and find that. I asked for it after reading the posts here and I explained what I had read. The specialist preferred to change my diet first instead of upping the iron to high levels as I had no feeling in my rectum (no feeling in waist to thigh) and was constipated for most of last year.. I was a "salad, low cal keep your figure" person. He placed me on a high fat diet. I had to eat offal, liver hot or cold, chicken skins, full fat milk, full fat cream (which I even drink now) thick drinking yoghurt, loads of butter on any vegetable etc. Veg to even it all out for digestion and stay off of processed carbs. Fear made me eat the lot. He said if we saw noimprovement in my nerves ( just feeling as he admitted last month aster seeing the MRI he didn't hink I would ever walk again) he would follow the high iron route - for now it appears to be working. The myelin sheath needs high fat for recovery. His main worry was to build the sheath. I am forever grateful for all the posts on this site and to the Japanese for their theories which I have put into practise.

[Guitarpickin]

Holy cow. So glad you (and your body) are making a come back!! Thinking of you!

[MissDem in reply to Guitarpickin]

Thanks, I am just lucky that I was given an MRI within six hours of A&E (middle of the night) and straight to ICU. The steroids stopped the paralysis before a full paralysis needing a tracheotomy. This all happened in three days from walking /shopping / fit person to paralysis/ICU. What I must not do is sit around, I have to walk, move, anything to keep going and get stronger as the steroids have given me atrophy all over.

[Guitarpickin]

My neurologist believes my RLS and PLMD/PLMS are due to my spinal issues. And I agree about the couch. It was always worse when I had a binge-watching evening or sat (slumped?) for hours socializing. I got a new bed, which made a big difference. And I also bought a supportive recliner, which helped (though I haven’t had an opportunity to sit in it at length). Whenever I’m proactive about doing my back strengthening exercises and stretches before bed, I rarely have a problem. But I do continue to take iron occasionally because I also thinks that helps. And of course I have not yet been able to kick my 200 mg of gabapentin + 5 mg of indica THC every night. Daily exercise also seems to be pretty important in managing the symptoms.

I’m really glad you have figured out a way to manage your symptoms! And especially with reduced medication. That’s wonderful to hear!

[marigold60 in reply to Guitarpickin]

Good to hear your neurologist agreeing about symptoms caused by back issues. I was never even asked, or examined and had to it discover the link myself several years down the line

[txgoldenmom]

I have had lumbar replacement surgery 9 years ago and I would definitely think my doctor would concur that’s where my RLS stems from. I also have sciatica. All sorts of fun going on here! Walking and sitting are equally PITA but whatcha going to do? Keep on moving s as long as I can. Beats the alternative.