Back in 86 a back injury caused my discs to blow and strangulated the siactic ...luckily during removal the nerve did not snap in any of the three spots.
It left me with a leg that did not listen twitched and kicked my wife.
Fast forward 33 years two divorces tons of antidepressants they insist I take. Then when I barely escape suicide . they want me to talk to a Dr about taking a shower proper hygiene I've been taking a hot bath a hour before bed for 30 years to help this.
I have such problems listening to idiot Drs.
I explain I don't sleep more than two hours before the hip and back pain start.
If I was lucky enough to fall.asleep or wake up to cramping thighs and the weirdest crawling thing my legs do.
I have no idea how to live on two hours of sleep a day. No naps no the body does not shut down.
I know what has happened.
I've lost hope joy laughter is a thing if the past.
Relationships only a couple people who have seen it from day one .
I'm too grumpy too broke and not willing to ruin other peoples time. Cause I can't keep up.
I walk 2 to 4 miles a day.or ride a bike. I'm in great health bmi is 24 I believe she said.
I could lose 10 pounds.
But no one will see me so it does not matter.
Hope I'm not bumming any one out.
These are just my facts.
Sadly hoping someone is in my boat.
Though that's the last thing is want anyone to experience. Except Donald Trump!
I'm glad you've felt able to come into this forum and write about your experience, you're welcome here and I hope writing about it has helped a little.
Incidentally, a BMI of 24 is great, I wish mine was that low, anything under 25 and over 18.5 is OK
I've had RLS for decades too. Many members on here have : you're not alone.
I'm sure you'll get some supportive replies from other members.
Excuse me also for offering some comments on what you write, it isn't always welcome, but I intend to be helpful.
What you describe is three conditions, although they co-exist and are associated with each other.
1 Your spinal problem has caused neuropathy. This will have caused you pain and numbness.
2 It may or may not have triggered your RLS i.e. the wierd crawling thing.
3 You also appear to have, or have had PLMD (Periodic Limb Movement Disorder) - kicking the wife.
The neuropathy as you know is due to the discs.
The RLS may have been triggered, (precipitated) by the neuropathy, but it is also likely that you have "idiopathic" RLS, i,e, an inherent tendency to RLS that you were born with.
PLMD is associated with RLS, about 80% of RLS sufferers also have PLMD. It usually happens when you're asleep, you dont know you're doing it. Your wife may tell you that you're kicking them. A sympathetic wife may worry about what's troubling you. A lesser wife will think you're doing it deliberately.
But that's my experience!
Antidepressants, I've had lots of reasons for taking antidepressants, e.g. two divorces plus other broken relationships. I suffer Aspergers so relationships are a problem in general for me. RLS can also cause depression and I have suffered chronic sleep deprivation as a result of my RLS.
However, sorry of you already knew, but antidepressants for someone with RLS is something to be avoided, (more so than for other people). Particularly SSRI and tricyclic antidepressants can trigger severe RLS. Youi may also have been given one for your neuropathy, amitriptyline is popular for this.
If you do suffer recurrent depression/anxiety then pyschological therapies are more effective for these in the longer term. Plus, they don't cause RLS.
You dont mention what therapies you've tried for your RLS/PLMD if any, whether medical or non-medical. so I wont write at length about these unless you invite me too.
Suffice it to say, there are some things that work.
Where my tale might differ from yours, might give you some hope.
I am now more or less symptom free from RLS and my neuropathy. I take gabapentin daily which relieves both. It also helps sleep and reduces anxiety. I haven't used an antidepressant for years. I undertook a course in mindfulness CBT.
I accept that I will never have the same relationships that "neurotypical" folk have.
Feel free to express your self in this forum, we are (more or less) in the same boat.
We are all experiencing the same problem but all have different symptoms , if that makes sense, I am so lucky to have the full support of my hubby, who I might add sleeps enough for me as well, sometimes 12/13 hrs, that of course is infuriating.
I wish you well and get some help, try and see a neurologist. Listen to Minerva.
Wishing you happiness for the future and stay safe.
I've got a neurologist. I've retired two. New one is guessing.
There medication game posses me off. I know which ones work and don't. Sadly only kolonopin works. And I took myself off all meds now getting some back.
Ty for caring.
Dave
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Hi Dave, neurologists aren't necessarily knowledgeable about RLS, so I can appreciate your frustration.
I understand that you'd like to manage by not taking any meds, but realistically this might not be possible.
You may have tried a few meds, since you say which work and which don't, but I wonder if there are others you're not aware of.
Klonopin, a benzodiazepine might work to some degree, but it's not particularly effective.
It would be useful for you to consult a RLS expert rather than a general neurologist and as Jools says there are a few Centres in the US that could help.
Klonopin (clonazepam) is one of the 4 classes of drugs used to treat RLS but can often lose effectiveness quite quickly. Were you ever prescribed opioids for the back pain? I understand it's almost impossible to be prescribed them now in the USA.
I can only suggest you ask your doctor to look at the studies on low dose opioid use for RLS being carried out at present by Dr Winkleman at the Massachusetts Hospital in Boston.
There may be a chance he would consider prescribing you a low dose opioid like methadone or buprenorphine and that would give you relief from the RLS. Methadone is regarded as the safest for RLS as it has the least rate of abuse and it's very effective at low dose and the cheapest.
Alternatively, you could ask for an alpha2delta ligand like Pregabalin ( Lyrica), gabapentin or gabapentin Enacarbil (Horizant in the USA) which work well for RLS and nerve pain due to the disc/back injury. Would your health plan cover these meds?
The nearest Specialist RLS Centre to Colorado is probably Dr Buchfuhrer's clinic in Redwood California. However, your health plan will probably not cover the costs of seeing him or travelling there. However, have a look at his website; it has useful information.
Don't be tempted to buy drugs/meds from the internet. You never know what you are getting.
Have you tried cannabis? It's legal in Colorado and can be very effective for RLS. You could ask the local cannabis dispensary for the best strain/THC level to help with RLS. I really hope you can find a doctor who will work with you to find effective relief for your RLS.
I'd rather blow my head off than take methadone or suboxone.
No room for a leash in my life.
Opioid suck those suck the life out of you.
Great if you like handcuffs.
34 years of pain pills. I'm done!
Kratom and cannabis all I will.use.
Along with kolonopin where ever it comes from.
You might think I'm a ass. But afterv33 years of torture I'm done.
My choice my way.
I've had to many Dr and people say just sleep.
That's why I have two divorces few friends left.
The way I see it almost 60 I'm cat hung my last few waves.
I tired of being tired.
All I can say!
• in reply to
Hi Dave,
I wanted to jump in here if I may. I don't think you're an ass at all. Quite the contrary, actually. I'm just so incredibly sorry that you feel the way you do. No one deserves that. I hear you loud and clear about people just telling you to sleep. I got that too and it was over-the-top frustrating.
Sorry that I can't be of more help; I just really wanted to say I'm sorry for how you feel.
• in reply to
Ty very much,
I'm just way over it!
I will be starting a benzos therapy. So that should be good.
It was used to help a lot. But after detoxing from all meds in the last 3 years I feel defeated.
Hi Dave, welcome. Your story is a sad one. Many of is can relate. Aa Manerva has said, the RLS itself can cause depression. Especially when it is not well controlled and you don't get much sleep but do get hours of legs that need moving. Mine are also painful during an RLS attack. It drains me of energy.
Manerva and Jools have given you excellent advice. I want to add two things.
The first: read more on this forum, and you'll come upon many stories with elements that you'll recognise. Plus the experiences and advices of other sufferers. There are many behavioural, non-pharmological and pharmological approaches to help quell the systems.
The second: from your story I suspect like Manerva that your RLS is triggered by the spine problems, but also that you already had the condition. The spine problems only exposed it suddenly. The current scientific hypothesis is that this idiopathic RLS is related to insufficient iron in the brain, brain iron deficiency. It is very difficult to assess the amount of iron in the brain, bit it has been shown that people with RLS have lower body iron stores than non-sufferers. Long story short: get your blood iron tested, especially the ferritin. It needs to be high in the normal range, at least above 100, but higher is better. About half of the RLS sufferers benefit from increasing their iron importantly. Most people start by taking iron. Best take ironbisglycinate, aka gently iron, once every other day. That reduces constipation and raises your iron values no slower than taling it the standard 3x daily. Here's the scientific paper to take to your doctor: sciencedirect.com/science/a...
I hope you get better help soon, and more importantly that you get a better hold on your RLS.
Finally, do consider to become a member of the US RLS foundation at rls.org. They have loads of good information and can help to find you a knowledgeable doctor nearby.
how awful to have had restless leg syndrome for 30 years after trauma damage to spine. If you have not had other tests for a similar condition periodic limb disorder then may be you should ask your doctor as this is different to restless syndrome in that it is related to sleep disorder, The symptoms may run concurrently but the insomnia and sleep pattern can be affected both night and day. The movements occur every 29 to 40 seconds . it is considered a sleep disorder as it disrupts sleep and can lead to daytime sleepiness. 80 percent of restless leg sufferers may have PLMD as well as RLS.
Treatment of PLMD may be treated according to medicalnews today.com/articles . it is the only condition to be both movement and sleep.
it is more common with iron deficiency narcolepsy dleep apnoea rem behaviour with vivid dreams restless leg syndrome spinal cord injury iraemia.
some medcations may cause it antidepressants anthisyamines antnausea meds withdrawal from diazepam
Treatment with caffeine avoidance in tea coffee and chocolate. do[a,ine agonists benzodiapines anticonvulsants and gaba agonists to reduce muscle contractions.
underlying conditions such as iron deficiency may be tested for. increasing iron may help but some preparations irritate the bowel lining and can cause constipation. As vitamin D levels may be lower with iron deficiency, tests for these would be useful, As iron is not properly absorbed if you have low vitamin d supplementing these this may help restless legs and PLMD . Asking for tests for sleep disorder might be a different route to being rediagnosed and assessed in the light of a sleep disorder.
If you are a fan of vitamins to aid health especially scar tissue formation leaving keloids on scar sites then this may be an ancillary treatment to help the lumbar region. Vitamin D in fish oil is strongly recommended as helping the nervous system and restoring brain health. Omega 9 found in olive oil helps muscular and spine tissue and re myelination of the nerve sheaths leading to the spine.
Vitamin A creams are useful for scar tissue which is hard and lumpy. I use a back massage roller to apply this after spine surgery. These are keloid scars.
Fibrosis of the spine might be helped by vitamin k 2 or 7. Taken with high dose of vitamin C and daily dose of vitamin D may help pain and inflammation. Omega 3 is recommended with fish oil rather than omega 6 in flaxseed and other oils as omega 6 can create inflammation. There are recent opioid drugs which can be used instead of standard. Ropinirole which may work better and not have augmentation problems. Expect you know all this already. Can you look at your lumbar region in a mirror? Have you had any physical therapy or physiotherapy advice?
• in reply to
Mine is all due to a spine injury l5s1 disc was strangulated around siactic nerve.
My iron is great my problem is a car tissue entered with a bunch of nerves.
I don't take the pill offered I have bad reactions to all of them.
I do my pt. Done everything I know of to do. Follow most instructions except meds. No more mind benders .
So I do what I'm doing
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Withdrawal from opiates. I e been on and of benzos they have never caused restless legs . no sleep.yes the RlS kicks it.
Like I've stated my.iron is great men is due to so much care tissue pressing on nerves.
No surgery is not a option scare tissue only come back worse
I won't take any more antidepressants I won't take any alzimers drugs for a short period to only have it come back on me.
I'm 58 been deal I g with this nice 86.
I am only willing to give it tillage 65.
If its not controllable and I don't feel better and happy.
I'm going to spend a month in Switzerland and go the euthanasia.
50 years is Enough.
Don't think I'm a quitter.
My limb moment shot and ability to kick and punch lovers is messed up.
Ivan see living a life so tired and so lonely for long.
Ill just end the game so suffering is fine.
I've just decided at 40 of pain and struggles.
I will call it quits.
It only cost 8 grand for the procedure.
No I'm not suicidal unless on drugs Dr give me.
So ill have a good time learn and apply what I can
Decide later.
Pharmacy drugs have way to many side effects.
For me
• in reply to
I'm in to yoga I wIll two to four miles a day. I've been doing this for 30 years yes to therapy all kind of us less advice.
Here in the states no one knows what's going on with RlS.
They like to give all bullshit that causes issues.
I just had to go on 6 months of trying all the new meds he wanted me to try.
I did almost committed suicide.
Finally he agree. To Kratom Cannibis and colonopin.
Kratom has stop RlS for now
Colonopin is to sleep at night due to back I wake up. So with it o sleep a tad better.
And Cannabis and a mood improved and medical enhancer.
My surgery went fine. I had no use of my leg pior it just dragged. And I could not sit.
After 33 years of pain pills)s I'm done.....
And no mute Sri or any mind drug.
I feel like living even if I'm tired oh so tired all.the time.
I've Ben.seeking help from the day I stared kicking my.1 wife in the sleep.
Its been a miserable 33 years hope I figure something out.
Cause the medical.community does not give a rats ass here in the stated.
I hope to be able to handle it for 10 not years.
After that just end this game.
I'm not going to.try and live 20.more years this miserable.
Just won't happen.
I have a choice, I choose quality over quantity.
And quality sucks now. So last ditch effort.
Before I call it quits.
Not a quitter just not in to causing my self any more problems. Trying to keep others happy.
No surgery can.help me. Medication causes suicidal tendencies.
So why continue that worthless adventure.
I've been dealing with for over 33 years.
I've had enough.
So I do what I'm doing to I'm done.
Ty for your thoughts.
I understand the pain which is driving you suicidal. It happened to my dad when he had keloid scars from sun ray treatment on his chest and from skin cancer when pain control was poor. Scar tissue if raised and thickened can be to do with too much collagen. I was told this with scar tissue which was itchy and lumpy. It has been helped by using ultrasound and the use of a vitamin A cream. The skin condition you have where the tissue tries to heal near the nerves may be due to fibrosis. Each nerve has a myelin sheath which if damaged through spinal injury might not repair. Vitamin K and D can help the inflammation and possibly pain. Omega 9 found in olive oil, can help nerve repair as well as vitamin D. Zinc deficiency can lead to poor healing so is an important mineral. As you are taking Lions Mane supplement to work on pain control and restless legs, these are alternative remedies. The special oil might work with some, as does hemp oil.
Flax oil might help, but omega 6 can actually create inflammation.
Other treatment which may be offered by Regenxx is stem cell treatment which helps repair the tissue by regeneration.
You can get liquid supplements . They even advertise superconcentrated omega 3 fish oil. on their website.
The company did research from 2005 which described the use of mesenchymal stem cells for the repair of degenerated discs in rabbits. The research showed it had potential even badly degenerated discs./ Most frequent treated include lumbar facet injury, SI joint syndrome .herniated disc, and degenerative disc.
The website might be of interest. There is a consumer health digest report.
Another suggestion for the restless legs is compression socks which may give relief.
I am so sorry you are having this awful pain, and psychological pain and don't get on with drugs. Did you say you had tried opioid drugs ? Oxycodone and naxalone is a round the clock treatment of pain.? This is a more recent drug and may not have augmentation problems
A neurologist would be the specialist to supervise your treatment, but stem cell therapy may be available through referral of your doctor. You might be able to contact them directly and explain your pain to Regenexx.
Don't give up hope yet.
I would n available. I would not give up until I had tried every form of treatment available . Your insurance may well pay for it. As you are a brave person who has struggled for years with pain, may be stem cell treatment would work for you?
• in reply to
I can live with pain.
Not sleeping more than two a night is insane.
Only thing that makes me suicidal are the drugs the drs give me for RlS.
All my damage is inside scar tissue surrounding a cluster of nerves.
Its been a lot of fun.
I appreciate you input.
• in reply to
That's why I think you have a sleep disorder as well as RLS. Do you drink strong coffee throughout the day? Caffeine and theophylline in coffee, tea chocolate can help pain but may also be an irritant if you have a sleep disorder as well as RLS. If you have PLMD as well as RLS as 80 percent of RLS sufferers have, then cutting out caffeine might help. With the supplements you are taking, you have to know how they work in the brain and if there are any interactions. If you were to cut them out and take a sleeping tablet before you go to bed, as late as you can, then you might find a good night sleep will help your condition, RLS is often mainly at night.
If you overcome the sleep problem, do you think this will help? Having had diabetic neuropathy with pain in the feet, and muscle twitching, I have found taking co -codamol, as a pain killer helps the restless legs and tingling, and also a sleeping tablet. Everyone is different and your surgery with the nerve
pain is probably severely painful. There are good websites which give information on cannabinoid oil and lions mane such as Quora. Do you find a hot shower on your back can relieve pain? Does heat help pain? Infrared lamps are used for severe pain. Vitamin C in large doses helps cystic fibrosis in the lungs and opens up the airways. It is also recommended for pain and inflammation. Aspirin can also relieve swelling and inflammation as well as non steroidal anti inflammatories. Some heat gels applied to the back can help the pain.
The Nobel Prize winner Paulus Lining was the first biochemist researcher who discovered the curative properties of vitamin C. *
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Good news, hopefully REM
GP increased my amitryptyline today as I haven't slept properly for a few weeks. I've stopped ropinirole as I felt they made my RLS worse
I AM NEW HERE BUT OLD AND I HAVE HAD RLS FOREVER!!
Has anyone else with RLS had issues with getting a GP to listen about potential Fibro symptoms too?
Anyone taking Gralise(gabapentin extended release) for RLS? How long did it take for it to start working?
