I've tried almost everything to get relief for my RLS. What else can I do?

[Antlers]

I am an 84 year old male, living in eastern United States, and have been suffering with leg and foot problems for over 30 years. I have seen eight different Neurologists over the years, and several said that I have Post-Thalamic pain, RLS, and Peripheral Neuropathy. I have taken Lyrica, Duloxetine, Alpha Lipoic Acid, Ropinirole, Gabapentin, Horizant, and other drugs prescribed by different physicians. I wonder if these doctors diagnosed my problems correctly? I may have different issues, other than these three. During my last doctor’s visit, he asked me if I would be willing to try marijuana. Has anyone tried marijuana for RLS or Neuropathy? Also, is anyone out there doing exercises that help them with RLS or Peripheral Neuropathy?

[Rlssucks1]

Antlers, I know your pain. I have been on two different types of meds for RLS and neither seem to work. What I didn't know and didn't find out until this site was that it was the foods I was eating that made RLS so unmanageable. I didn't know that sugar, caffeine, and (wow) salt were my main culprits. Once I switched to decaf coffee, sugar-free foods, and sadly had to stop my corn chip intake (anything with salt), I feel so much better. Moral of the story is, medications only work if we also watch what we eat. I can even cut down on my meds!

[dlr222 in reply to Rlssucks1]

re the salt: I use a salt substitute (called no salt) that tastes just like salt to me, and it is potassium which I needed. but I must say that too much potassium is not good! but mine is checked once a year.

[Rlssucks1 in reply to dlr222]

is there any changes since using this substitute? This sounds interesting.

[dlr222 in reply to Rlssucks1]

it did being my potassium up on blood tests but didn't stop the RLS. it is an easy way to get potassium (600 mg in 1/4 teas) as you can only buy 100 mg pills over the counter. until the low-oxalate diet I put it in low sodium v-8.

[Hidden in reply to Rlssucks1]

[erased]

[Hidden]

Hio

I've not heard of Post Thalamic Pain before, but I read that it is pain caused by a "central neuropathy" following a stroke, (cerebrovascular accident). Is that what happened in your case?

Peripharela Neuropathy (PN) is casued by a temporary dysfunction of or damage to peripheral nerves, i.e. outside the brain or spinal cord.

There are many causes of PN, some damage may be irreversible, i.e. nerves cannot be repaired. This includes damage caused by a poor microcirculation to the nerves e.g. as in diabetes.

PN can be sensory (pain and /or numbness) OR motor (muscle weakness and paralysis) OR BOTH.

"Secondary" RLS can be caused by PN and/or by poor circulation/venous insufficiency as werll as otheer conditions like anaemia.

"Primary" RLS is in an inherited issue which hence tends to occur earlier in life and in the absence of any underlying cause.

If you're wondering if you really have RLS or not, you can check by comparing your symptoms to the RLS diagnostic criteria.

Here's a link to the criteria

irlssg.org/diagnostic-criteria

Note that pain isn't mentioned.

It's also significant if ropinirole worked to relieve the symptoms you think of as RLS or not. If it didn't, this sometimes indicates that you don't really have RLS. Similarly (but not as definitely) Lyrica, gabapentin or horizant.

If you DO have RLS then it can help to know if it's primary or secondary.

The reason for this is that brain iron deficiency is a factor in RLS and this is especially so for primary RLS. In which case iron therapy is a treatment and in somecases can be effective without any medication.

For ALL cases of RLS it's worth trying to identify and eliminate all triggers and aggravating factors that may be making the RLS worse.

If you're on any medciations at all. for whatever reason and whether regularly or occasionally, they could be making your RLS worse. There is a lot of them!

Duloxetine is one of them. It will make RLS worse.

Also as Rlssucks1 says, there could be aggravating factors in your diet.

Marijuana can help by all means.

That is irrespective of whether you have RLS or not.

If you DO have RLS then a good opiton for you would be an opioid if your neurologist will prescribe one.

Oxycodone or methadone are popular for RLS.

If your neurologist is unwilling then depending on where you live in the US there are some renowned RLS experts and RLS centres of excellence that may help.

[Stdorn in reply to Hidden]

I agree if it's rls and he has pain I'm sure an opiate or synthetic opiate like tramadol would work wonders. It's been known that opiates are beneficial for the treatment of rls for over 300 years. This was discovered by Dr Willis as in willis-ekbom disease. Unfortunately in the time of the supposed opiate epidemic Drs are afraid to prescribe them.

[Hidden in reply to Stdorn]

Tramadol on it's own is possibly not potent enough, may need a higher dose and incur side effects.

Despite the "opioid crisis" opioids are accepted as treatment for refractory RLS and, (at least in the UK), licensed for it.

There are even published criteria for doctors to judge who may be a "safe" user.

It's a matter of finding a doctor who's willing to take the responsibility of prescribing one.

[Joolsg]

What drugs are you taking now Antlers, including OTC meds like anti histamines and cough meds like Benadryl?

Marijuana can help with sleep ( it helps with deep sleep) so you don’t notice the RLS so much but I don’t think it can keep severe RLS under control.

There are several RLS experts in Eastern USA - Dr Early at Johns Hopkins in Baltimore, Dr Winkleman at Massachusetts General in Boston. There’s also Dr Glen Brookes in New York.

They all prescribe low dose opioids so that could be an option for you.

The RLS foundation in the USA has several support groups and runs webinars on RLS so you should consider joining. Really excellent articles as well which you can access and print off.

[Svengolly]

Where is in ferritin levels is the number one Cure . What is your ferritin level ?

[nopeno1home]

Mirapex+ Lyrica+cymbalta combo has helped me considerably. Also I started taking a product from Plexus that has been working extremely well with my meds. I also have food triggers; sugar and coconut. If you're interested in the product from from plexus let me know and I'll tell you about it. I'm not trying to sell anything I'm just letting you know that it's done wonders for me.

[marsha2306]

Duloxetine can make RLS worse. Are you in Maryland by any chance? If so, you should try to see Dr. Christopher Earley at Hopkins.

[MoxieLake]

I was on 1mg of Ropinrole for over a year and it worked very well up until a couple of months ago when it seemed to be causing augmentation and much less effective. My doctor switched me to gabapentin a couple weeks ago which I am still adjusting to. So far it is not helping with sleep.

[auntiesioux]

Wow, great feed back and much to be considered and sorted. Short story from me: I am just 80 years active, live on a farm and adore my life. I have had WED (the correct name Willis Eikbom Disease) I use this reference as I find none WED people can not relate. I also say I have leg seizures which they actually are, almost. This keeps me from being dismissed with minimal comments like, "No one ever died from restless legs." That was from a doctor. Or will hear, "Oh yah, I had that once." If I say Willis Eikbom Disease, I am usually not dismissed with lame comments.

With all that said and with all the comments below, everybody is right, mostly for them self. Before all the directed meds became available for WED I went to the doctor and said, "Ok, I have tried everything I believe in and everything I don't believe in. Now, I want either heroine or a gun." Yup, was not happy. I like you have invested the entire alphabet of 'cures and fixes." I can add to the chemical list, acupuncture, hypnotherapy, homeopathy, massage, extreme exercise, mild exercise, diet changes hot tubs blah, blah, blah. I have trigger foods, some the same as below. Coffee does not affect my legs. In fact for years I would drink a small cup of coffee in the middle of the night and legs dancing stopped with in minutes. I posted this and many people agreed. This does not seem to help anymore.

We both have tried numerous meds with little success . Opioids are very effective but doctors will not prescribe readily with the so called opioid epidemic. My personal triggers are a full bladder, alcohol, lying on my back too long plus other weirdness. The stuff about iron is related to the brain uptake of iron, something like that, not the serum iron that is traveling round your body. I am sure your doctor has checked your kidney function and diabetes status or pregnant, as all of those can cause secondary WED.

As of lately I notice a random pattern of my symptoms cycling. I call "good" when whatever I am taking works, i.e. symptoms are controlled. When 'bad' same drugs do not help. YES to CANNABIS. At 80 years old I finally started using cannabis, not a straight CBD in the form of a tincture or smoke. It absolutely helps but certainly never enough. I also find that even though I am a small woman I need larger than 'normal' doses of whatever I take. For example if I can take a large dose of trazodone about a few times a month IF I am in a bad cycle, it really gives me a great drug induced sleep.

Exercise has never helped although I do all kinds of "exercise" in the middle of the night just to keep up with my legs. GABAPENTIN I is a big NO for me as it has the propensity to elevate pancreatic levels and increases the incidence of pancreatic cancer. Check this last statement out.

I went to Johns Hopkins and was gravely disappointed. The 'new' mediation that Doctor Allen is using is a derivative of gabapentin. Bummer. Always check who is funding the new drugs, a sad shocker.

I am so sorry for both of us to have to deal with this at our age. Bottom line, perhaps might have saved much rambling words is try drug combos and change around if nothing works. Have you checked alternative doctors. I really don't think that WED is a neurological problem so why do all of us seek out neurologist?

[jezr45]

I've found amitriptyline works well for me. Took nearly a month before RLS stopped waking me up. Have had to increase my nightly dosage to 35mg as my hands started being restless during the night. Would wake up with my hands and fingers in pain and restless until we upped my dosage.

I do take a slow release morphine (zomorph) in the morning to keep my limbs under control during the day as well. Also have Oramorph for the bad days. I'm lucky that my doctor ( in UK) has RLS as well as was quite happy to prescibe opoids as he's seen the benefits himself.

Good luck with it all.

[Joolsg in reply to jezr45]

You’re very lucky. Amitriptyline worsens RLS for 99% of us and is listed on all RLS expert websites and all RLS textbooks as a medication to avoid along with the majority of anti depressants.

[larryvon1012]

try quinine sulfate, 200 mg per day, or safer to try approx 20 oz of good tonic water which has approx 60 mg of quinine in natural form from chinchona bark.