The pains in the right knee could be caused by the right leg having to shift a bit to accommodate the left. But whether that's related to the nighttime pain, I don't know.

Nothing helpful to offer, I guess, except best wishes!

I have what I think is restless leg pain at night and I take no medications whatsoever. I'm 82 years old with arthritis issues that I elect to ignore most of the time and I have had chronic knee pain due to a terrible injury a few years ago.

The pain is excruciating when it occurs so I empathize with your DH. Thru trial and error...I've found a couple of solutions that work for me. One is drink more water. Stay well hydrated all the time. As we all age...dehydration is a major problem that needs constant attention.

The other solution is the use of a heating pad on my feet...at night...in bed. It, too, works wonders. I have very poor leg circulation due to the loss of the major artery in each leg many, many moons ago....in my 20's. The gentle heat stimulates the leg circulation and helps considerably.

Has he tried gabapentin?

Oooo, be careful of gabapentin--it has some nasty mental side-effects for some people.

My mother had rls and knee pain, though they were two separate issues for her. She ended up on heavy narcotics for the rls eventually, and rubbed the topical analgesic on her knees for pain relief. Has he tried putting a heating pad on his knees?

I'll betcha his one leg isn't shorter than the other. He probably has scoliosis. I have the same issue. I list to the left. One doctor diagnosed scoliosis when I was around 20. That was more than 50 years ago. Nobody had ever heard of it then, and nobody knows what to do about it now. I have the pain and contractions around my left ankle. It's debilitating and upsetting. I do take gabapentin, but it's only mildly helpful.

Please keep us updated. I'm curious to know what is suggested for your DH.

I have RLS, and at times it will affect me during the day when I am seated, as well as at night. There is no pain involved, just a very uncomfortable and compelling 'twitch' (for lack of a better word for it), that causes me to move my legs constantly. Sometimes doing an exercise, while seated, where I stretch my legs out straight in front of me and hold for about 3 seconds helps. It takes about 20 to 25 stretches per leg. A 250 mg tablet of magnesium at bedtime helps, I've had fewer 'attacks' since I've started that. Also, Hyland's Restful Leg pills help if I take them just as soon as I notice an attack beginning. I've also noticed that some vitamins, particularly the B vitamins, seem to aggravate the RLS.

I do have Osteoarthritis in my shoulders, especially, and it's beginning in some other joints, too. But strangely enough, my knees don't seem to be affected by it. Yet. I've found that avoiding foods in the Nightshade family helps a lot with the pain from the OA.

I sincerely hope your husband is able to get some answers and some relief, soon!

Rusty

Edited to correct a typo. 250 mg magnesium tablet.

Thank you all so much! Earlier this week I found a gadget online that might help . Winter's (and sjerin's) suggestion for heat encourages me about this. It's a knee wrap with a battery. It can provide heat and/or massage. DH will ask the doctor about using this tomorrow.

clearwaters -- Scoliosis would be a new wrinkle. I've developed it in the last few years and am doing PT to try to help it. (Neurosurgeon wants to try PT before trying surgery.) You'd *think* if DH has it, it would have been known by now; the left leg has been shorter since he was born. (His adoptive mother was an RN, but the woman kept a thousand secrets; this could be one!) DH had no difficulty -- tennis team in HS, etc.

Both DH and I have been prescribed gabapentin in the past. Neither of us tolerated it well. Elmer, I see you mention you only take the branded variety; did you try and reject the generic? (I've had that situation with a medication.)

Bless you, KT friends! I'll report back when we know more.

Hoping you get the answers needed soon!

? peripheral vascular disease (PAD, DVT), sciatica/spine/hip radicular pain, Baker's cyst

Yes if I were in his position I wouldn't let it go. Keep pushing to figure this out. See the doctor as much as needed for as many tests as needed for a clear diagnosis. Or at least to eliminate as many things as possible.

I've seen the range in my family all in the knees. One person's nightly cramps turned out to be cancerous another person's turned out to be a cyst and one person was having radiating pain and cramps from sciatica and another person's was bone loss. For my son-in-law after many many years of cramps in his thigh they found scoliosis of the upper spine was doing it. Not sure of the exact dynamics but he had to have physical therapy for months. He is now cramp free. The body is very weird.

They all had similar symptoms with very different treatments. Luckily everybody is okay today. The new hip works well and for the cancer in the knee the cancer is all gone and the new knee works very well as well.

"Elmer, I see you mention you only take the branded variety; did you try and reject the generic?"

Yeah, a funny thing. My RLS manifestation, detected >20 years ago at my first sleep study, is that it wakes me up when I'm sleeping, I have no twitches or involuntary movements anywhere else or at any other time. I've used Neurontin and a CPAP machine ever since and sleep well.

Maybe 15 years ago or perhaps a bit more, my firm's drug benefit administrator began a not well communicated new policy of "use generic over brand whenever possible" as a cost reduction measure. My written prescriptions always specified brand but at one renewal after this policy change, my wife picked up the prescription. Because I normally did that, she didn't notice either the price difference or the wording on the label.

Something I understand now after the fact is that a week or two later, I started having regular "waking-up" incidents. Nights in succession, every hour or two. I happened to notice that that the prescription had been filled with the generic gabapentin, not the brand version. I called the Sleep Clinic, spoke to a doc, asked if other sleep patients had ever reported different results from the Neurontin generic as from the brand, and I received an immediate "Yes, it's pretty common". She explained that while the active ingredients in good quality generics are the same as with brand versions, the inactive ingredients and even the gel capsules can differ and these can affect absorption rates and thus perceived effectiveness. I take several pills, more than two, right at bedtime.

My firm uses the same benefit administrator after all these years and the work around is that every 12 months, I need to ask the doctor to send in a letter for a "policy exception". The wording may be somewhat different, but it's a letter from the doc saying that the generic versions do not provide the therapeutic benefit for me that the brand does, and so the brand is required. They accept it without dispute. It happened a few months ago - I'd lost track of the renewal date for the letter, the clinic sent in a prescription renewal as always labeled as "brand only". The pharmacy called me the next day to say that the charge had been refused by the administrator and they'd only approve a generic. It took me 5 days and too many phone calls to get it resolved, but I did and fortunately I didn't run out. I noted it on my calendar to do in advance next year.

For those of you experiencing leg cramps, I've found something that really helps me. Not perfect, but a great improvement. I take electrolyte tablets at bedtime, and yes, try to keep hydrated. Sorry, but I can't see drinking sweetened liquid electrolytes all the time.

I use these from Amazon, not expensive. And I take at bedtime. 50 2-tab packets, $12.69

https://mediqueproducts.com/Catalog/Medique/medilyte.html

I get night cramps in various parts of my lower limbs after a day of more intense exercise, like if I am in the saddle for more than a couple hours along with walking and being on my feet more than usual. I find stretching before bedtime and making sure I am well hydrated helps quite a bit. When my feet or legs do get cramps the only thing that really helps me is to get up and walk it off.

Wildchild, give the tablets a try. Take before bed. I tend to only have cramps when I don't take it.

Does he sleep on his left side? If so, any attempt to lift the right leg (involuntary or otherwise) can result in a twisting motion being applied to that knee. It would hurt!

I haven't had restless legs at night since I started being faithful about magnesium supplements. I take either magnesium glycinate or a blend of glycinate and malate.

Another vote here for avoiding the nightshades: potatoes, tomatoes, eggplant, and peppers. My sensitivity to them is extreme (I have to avoid artichokes and okra too), but they're famous for intensifying joint inflammation in many cases.

I'm sorry I ever took gabapentin. It was prescribed--the lowest possible dose--for shingles, and I had a terrible time with it. It even affected the nerves in my teeth, and cost me a root canal. Yes, Elmer, I'm glad you've done well on it all these years (although gabapentin seems like overkill for restless legs), but it's not for everyone.

I've had episodes of RLS for years, mostly in the summer and related to having been out in the heat and perspiring a lot - like out doing heavy outdoor chores or running. Taking OTC Magnesium and Potassium relieves it, often within 20 minutes.

However, lately, since starting calcium supplementation, I have been having a different sort of muscle cramp - severe spasms and very painful, that can affect hand, foot, or thigh as well as calf, and not relieved (sometimes worsened) by attempts to stretch the affected muscle. The last episode woke me up with severe spasm in one leg that within a few moments included the other.

I stopped the calcium - the spasms stopped. Restarted the calcium - they resumed.

Once again though, since I started taking OTC magnesium and potassium with the calcium, the spasms have stopped.

Apparently I don't get enough mag through diet alone to balance out losses, or balance additional calcium intake.

I've had leg and foot cramps for many years. They had gotten worse over the last few years to the point where I dreaded going to bed. I had tried pain medication, muscle relaxers and every other remedy, but nothing helped. I was taking gabapentin and it did help me go to sleep. I still had cramps, and also shooting pains which made my legs jerk and woke me during the night. I wanted to stop taking the gabapentin because it made me feel terrible when I woke up. Since I stopped taking it I no longer have the shooting pains, and leg cramps don't happen very often.

Elmer, you're fortunate that gabapentin hasn't caused you any problems. I wish I could have taken it without any side effects, but it was not to be.

@sushipup2, want to make sure you know 2 tablets only gives you 1 - 3% of daily value recommended by FDA.

FDA daily value (DV) for adults is:

• calcium 1,300 mg

• potassium 4,700 mg

• magnesium 420 mg

Interesting, mdln. 1-3% is like nothing. Could it be a placebo effect?

"Yes, Elmer, I'm glad you've done well on it all these years (although gabapentin seems like overkill for restless legs), but it's not for everyone."

Apparently so. The sleep clinic I've gone to for all these years is at a medical school. The faculty attendings there are researchers, several of whom were trailblazers in the sleep field whose work many decades ago identified and explored previously unknown medical effects of sleep and its many interrelationships with other medical conditions. One of whom, who examined me many times at my annual visits and whom I got to know pretty well, had coined the term "obstructive sleep apnea".

When my RLS was seen in a sleep test, they suggested trying the medicine while saying that it was an "off-label" use, not approved by the FDA for RLS treatment but not prohibited either. I think the effect was found by serendipity.

I'm not sure why you're suggesting it to be overkill. Why is it different than any other medicine that's effective at a carefully chosen dosage? For me, the dosage has been increased slightly a few times over the years but as before, I've been taking it for a very long time and it does work. On the rare nights when I forget to take it or am somewhere having forgotten to bring along the bottle, I wake every hour or two throughout the night.

Placebo? Perhaps, but if it works for me and isn't expensive, I'll keep taking it.

The two pill dosage doesn't have to be meeting the daily requirement since you're probably getting that from other sources as well, Those two little pills might just be the little bit of boost that you need. A single banana doesn't meet the daily rate of potassium either. It's just one additional way of meeting the goal.

Sure a lot safer than an anti-seizure drugs that actually is known to cause brain chemistry changes.

DH returned from the neurologist, who now is not ruling out RLS and has prescribed gabapentin (generic) -- effect to take a week or two. DH thinks it's 300 mg.

My conclusion: Neither the neurologist nor the psychiatrist *knows* what he has, nor what to do about it.

OK, he'll try the gabapentin. At least we know it works for Elmer -- and we know he could try Neurontin or other brand name gabapentin. His only other meds are lisinopril 20 mg, duloxatine 20 mg, and aripiprazole (generic for Abilify) 1 mg.

Thanks, all! Story...to be continued, I guess.

Gamma-aminobutyric acid (GABA) is a neurotransmitter, which sends messages between nerve cells. Gabapentin provides GABA changes in the brain, diminishing abnormal activity. If you would like to read more about GABA: https://www.ncbi.nlm.nih.gov/books/NBK513311/

sushipup, not just placebo, but "placebo effect". It's a well-accepted medical phenomenon, something that most people can be expected to experience even regularly with any number of different things in their lives.

A 1-3% boost of anything with an established daily value is most unlikely to have an effect. The recommended daily values are approximations, not bright line amounts. Round these numbers to the nearest 10% and you get zero percent.

Please let us know if the gabapentin works, Chisue. I forgot about magnesium as others have suggested but it's important to get the chelated version which is better absorbed. Magnesium glycinate

When I had Shingles on my scalp the pain was horrible. Doctor prescribed Gabapentin to help with the nerve pain on my head. I started taking it and two days later became so dizzy I grabbed my son to stop myself from falling. I have never experienced anything like this before.

It was a stressful time, my husband was sick. It was during the day, I was visiting at the hospital when it happened so suddenly, I had no warning. The room was spinning, my son was able to grab me.

We attempted to get to the elevator to leave immediately, I literally could not stand up. Finally a nurse brought a wheel chair for me and my son got me out of the hospital and home.

Maybe it was just me, but I would never, ever take that drug again. I'm glad to hear it works for so many, but boy, it scared the heck out of me!

Jane

mdln -- Thank you. That is so *fascinating*! That we even *know* it is amazing.

DH took his first gabapentin 300 mg last night. I guess we'll see if this helps the leg spasms; is the right dose; has tolerable side effects. The tutorial mentions GABA in essential tremor, which DH has in both hands, still only 'mild' after 35 years. nc

This gives me an opportunity to nag him to drink more water -- now that I am so smug about consuming my pitcher full.

Good luck for your husband.

As just one data point and with no intention at all of making a suggestion or recommendation, I'll share that I take 1200 mg all at once, at bedtime. Even when I take it earlier in the evening with several wakeful hours remaining before bedtime, I feel no noticeable effect.

What I think is a funny AND sorry story - for years and years, my prescription was for a daily dosage of 4-300 mg capsules, to be taken at night. About two years ago, the day after I'd requested a refill at the pharmacy, they called me. "Your prescription administrator is only going to cover 75% of the cost, so we need to charge you an additional amount (It was something like $150).

I called the administrator and asked what was going on.

I was told "Your plan changed and it covers a maximum of 90 pills per month for any one drug".

I asked "Does it come in a 400mg size? 4x300 is the same as 3x400, would you cover that?"

"Yes, of course, that's 90 per month, but your prescription is for 120 of the 300mg size and we'll only cover 90 of those per month".

So I had to call the doctor and have them send in a new prescription for 3-400mg capsules per day instead of 4-300mg ones per day. It's been fully covered ever since. Such nonsense.

Reporting: Last night (second night on generic gabapentin 300 mg), DH had zero muscle spasms in his right leg. The right knee is still sore, but this is the first night in months without spasms. Crossing fingers that this is going to do the trick!

Elmer, what nonsense about the quantity of pills! Along those same lines, with DH's prescription for 1 mg of Abilify daily, I discovered that a 5 mg pill cost about two percent more than the 2 mg pill prescribed to be halved. I was able to cut the 5 mg into four pieces. The doctor approved, as there was some waste, and each piece was close enough to 1 mg.

Yeah, isn't that crazy.

Thanks for update, good to hear he had some relief. Gabapentin dose seems to be especially unique to individuals, some get relief at low doses, others require high dose. Fortunately the medication comes in varying strengths so we can start low and slowly increase to an effective dose (to minimize side effects).

There is a form of arthritis that attacks the points where tendons and muscles attach to the bone. I had such an attack last year around one knee joint. Fortunately, it was not within the joint, but was painful when those points were loaded. It abated after 3 months with gentle exercise and motion, and taking off 20 lbs. However, weight loss without exercise may be bad since weight loss can be from both muscle and fat loss. The is a natural tendency for men to loose muscle mass with age. Bones need to be loaded to combat bone loss.

jemdandy -- Thank you for that useful information. I'm doing PT now for my spinal stenosis and scoliosis. It may be time to enroll DH as well!

mdln -- That sounds too easy to be true...the weaning procedure lasting only a week? Or, does it mean stepping down week by week from, say 900, to 600, to 300, to nil over three weeks?

Sadly, DH's relief lasted only that one night. He's back to 'normal' -- waking an hour or two after bed with strong muscle contractions and resulting knee pain. He's to report to the neurologist Friday.