New guy with old RLS

[OudisCool]

70 year-old Vietnam veteran… AND Jazz guitar player Tramadol times eight years, (hellish withdrawal x 14 mos), 12 years to present on hydrocodone 10 mg 4 x a day. My doctor is going to switch me to Suboxone because I’m going through opioid withdrawal 4 x a day. Besides refractory RLS, I have chronic shoulder pain (surgeries in both including one total shoulder replacement), and chronic lower back pain from degenerated spine and four bulging discs. Researching Suboxone is giving me great hope for getting my life back. I only survive day to day through God’s grace. Looking for folks who have experienced positive results with Suboxone and/or Propranolol for RLS and/or chronic pain. (I’ve been part of Dr. Winkleman’s study of RLS patients on opioids for over a decade.) It’s nice to be among folks who understand the devastating effects of this disease. Praying for strength and guidance every day…

[Nikos64]

Best wishes sir ! Most importantly thank you for your service !I’ve been on Tramadol for 8y. I’m taking 150mg a day. It’s been working well for me in terms of controlling the RLS. However, I’ve had weeks where the RLS has been debilitating. Recently I discovered that when the RLS is terrible a hot bath with Epsom salts for 15m AND 400 to 500mg of Magnesium enormously helps. It is also important you limit your salt intake. Salt increases your serum Ca which seems to have an excitatory effect. Magnesium competes with the Calcium and seems to have a calming effect.

Please try it .. maybe it works for you.

[OudisCool in reply to Nikos64]

For what it’s worth, I thought I was going to die withdrawing from tramadol after eight years, took over a year. Hydrocodone, (or heroin for that matter), is easier to withdraw from. Having said this, if you get desperate you can drive to the border and buy tramadol cheap at any pharmacy in Mexico. I just came back from living there for five months. My doctor is going to switch me from hydrocodone to Suboxone which I have high hopes for. Hydrocodone 10 mg. was absolutely fine for about eight years, but the last three I started experiencing withdrawal four hours after taking a pill that needs to last for six hours. Three suggestions: Relaxis Pad and/or Restific foot wraps… have both and have had some success. PRAY… please don’t underestimate the power of God‘s grace. I started dealing with refractory RLS 20 years ago and wouldn’t have made it this far without prayers being answered. God bless you… And don’t try heroin, I was being sarcastic. I used it for awhile after returning from combat duty (medic), in Vietnam… Big mistake. The cure becomes much worse than the disease. John 3:16, Eph. 5:1… The truth will set you free. 🙏✝️🙏

[TheDoDahMan]

Good luck, old-timer. I'm 76 and have been taking low-dose (5 mg, twice daily) methadone for the past 3 years as my only medicine for RLS. It has completely wiped out all my symptoms from the day I was started on it. I've developed no tolerance to it and have never needed or wanted to increase my dosage. Just letting you know what's possible, at least in my case.

[radair0502 in reply to TheDoDahMan]

I was on hydrocodone 10 mg for about eight years before having mild withdrawal symptoms in between doses. It still worked and I slept at night, but the withdrawal becomes almost as bad as the the RLS. That’s why I’m looking forward to trying Suboxone. God bless you sir…

[OudisCool in reply to TheDoDahMan]

Can’t find anybody that will prescribe methadone… I’ve heard it works great. I have high hopes for Suboxone ending this daily opioid withdrawal… I might get it this week. glad you’re doing well… What type of doctor prescribed methadone for you? 🙏

[TheDoDahMan in reply to OudisCool]

My prescriber is Dr. Buchfuhrer, whose name you will often see reverently mentioned in these pages. He's actually a pulmonologist, but specializes in RLS, and practices from an office in Downey, California. He is a co-author of the paper on the use of opioids for RLS, Mayo Clinic Proceedings 2018, which LotteM references (and gives a link to) in her reply to you, a few comments further down.

Perhaps if you print out and deliver the Mayo Clinic report to your doctor(s), it might induce them to feel less negative about prescribing methadone. It is certainly true that the current opioid panic in this country has put RLS sufferers here in a difficult position. Best of luck!

[LotteM in reply to TheDoDahMan]

Thinkuad, if you need a knowledgeable doctor, do consider looking at rls.org, the very active patient organisation in the US. It may well pay to become a member. They have a series of quality care centres, that I think may be accessible even without a membership. And there are patient support groups in almost every state. I am sure you will find some very useful information there at rls.org. Dr Buchfuhrer, mentioned by TheDoDahMan is one of their main advisors.

[Hidden]

Hello to a fellow musician! I play a little guitar, but I am classically trained. I conduct and play the French horn. I also have RLS and shoulder problems, but not nearly to the degree that you do. I had a fragility fracture in my shoulder over the summer, and I have arthritis in both. I am also a three-time cancer survivor.

Now, this is weird, but I had a car accident a couple of months ago. My legs jammed really hard into the steering column, resulting in severe bruising and a hematoma in one calf. But the RLS symptoms stopped. I thought it was temporary, because of the trauma. I am now healed, and the symptoms have barely returned. I take an occasional Pramipexole, if I need it, but the nerves are so much better.

So, I can't actually help you or tell you about the drugs you're asking about. I wanted to write because you're a musician, and you're a man of faith. I admire both. I wish you the best, and hope you find the answers you need.

[radair0502 in reply to Hidden]

Thanks brother. My favorite music is classical, but I’ve only started “jamming“ to it in the last few years. I play by ear and know just enough theory so it doesn’t interfere with my playing (Barney Kessel quote). I mostly play counterpoint to, “ethno-jazz.“ I love exotic instruments… Koto, Oud, Tablas, steel drums, bass clarinet, “…angular banjos sound good to me,” - Aja-Steely Dan… etc., etc. I love French horns… Always wondered if you get spit on your fist 😂. My harmony instructor in college engendered love for French Horns when he would play FH parts on the piano. (Hope to videotape some playing soon… I’ll upload a link. Would enjoy listening to your playing if you have a link). In His grace…All glory to God.

[Hidden in reply to radair0502]

Hi radair0502,I was responding to Thinkuad, but that's ok, it's fine that you answered. BTW, brother, careful with your assumptions -- I am a lady! Lol 😁

I'm glad you like the French horn, as well as classical music. I don't play much since the pandemic began. I'm more into conducting. I just participated in a three-band, combined community Christmas concert, that took place in a lovely local theatre. It's being shown on local tv, and eventually on YouTube. I'm being promoted from Assistant to Director of the community band I've played in for around 27 years. I'm pretty excited. But enough of that....

I'm surprised you could stay on hydro for that length of time, without needing more. Hydro doesn't do much for me, but Percocet works really well. I was taking it for severe osteoarthritis in both knees. I had both knees replaced. I kept taking the Percocet for the RLS. It kept my legs calm, but my GP stopped prescribing it, and pain management forced me off of it, cold turkey. As I explained previously, I'm doing better, now, with Pramipexole, as needed. I hope you'll be able to switch meds, and the change works for you.

[Nanpat in reply to Hidden]

Hi there, I am a lady as well in Australia 🙂Just curious, I’ve been told by many Drs that pramipexole can’t be taken as needed but must be taken daily?

How often would you take it and does it work immediately?

Thanks

[Hidden in reply to Nanpat]

Hi Nanpat,I used to take the Pramipexole regularly, but that's when the the condition was more severe. I used to get flare-ups in the mornings and the evenings. Since the car accident (see previous post), I have occasional symptoms, so I just don't need the medication as much. I don't want to deal with augmentation, so I take the Pramipexole only when I need to. I have no problems with withdrawal, I'm just fine. And, I do take it every day, just not as much. When I do take the Pramipexole, I'd say it takes about 20 minutes to work. As I said, my symptoms aren't as severe any more, so I get relief pretty quickly.

Listen to your doctors. Don't change your routine because of what I do. If you have consistent attacks, you probably need to have a consistent amount of the Pramipexole in your system. If you anticipate when you're going to have an occurrence, you might take the drug in advance, as opposed to when the symptoms begin. Lots of people do that.

Hope I explained this well enough for you --

[OudisCool in reply to Hidden]

Ooops… that email and Thinkuad are both me. I misspelled Oud (lute-like stringed instrument),. Sorry for the confusion. I would chat some more but just found out the other day my wife and I have Covid and don’t feel so good. Bless you… and good luck.

[Jumpey]

You are very much welcome here. I empathise greatly with your situation and your endurance of RLS. We all certainly need spiritual strength to cope with this condition. Sorry I have no experience of the drugs you mentioned. But it sounds like you are in good hands. Good luck.x

[radair0502 in reply to Jumpey]

“Jumpy,“ was my name until I finally found a solution to RLS. Good luck and bless you

[LotteM]

Hi Thinkuad, welcome. You've been through a lot. I can only share my experience. I have taken 'pure' buprenorphine. Subuxone is buprenorphine combined with naloxone, the latter counteracts some of the unwanted of the opioid, mainly the euphoria, but supposedly also some other aspects, like constipation). When on buprenorphine tablets I took 3 a day (each 0.2mg, but the dose can vary quite a bit between individuals) and most likely suffered (mini) withdrawal in between the doses like you do. Some people process a medicines faster than others. Since a week I have been switched over to a patch that releases buprenorphine continuously. Not all unwanted effects are completely gone, but I could already tell after a day or two that I was far more stable. Key is that if you get switched over to Subuxone make sure (ask pharmacist) you dosing is frequent enough to avoid getting 'highs' and 'lows'. I actually get by on a far lower dose with the patch, most likely because of the stable availability. Subuxone doesn't seem to come in patches, ao that would only be an option if your doctor is willing to switch you to buprenorphine without the naloxon. Please do discuss with your doctor. And do read and maybe print and bring the paper on the use of opioids for RLS, Mayo Clinic Proceedings 2018: mayoclinicproceedings.org/a...

Also, the very recently update guidelines for the treatment of RLS In the Mayo Clinic Proceedings of Sept 2021 discuss opioids, including buprenorphine, and list typical dosis. But that is for RLS only; and you have also chronic pain, which may warrant other doses.

[radair0502 in reply to LotteM]

LotteM… Bless you for your kindness and insights. Eph. 5.1

[Dougg]

Hi Thinkuad. I'm just a year behind you in this life journey and have suffered with severe RLS for a number of years. You're in a supportive place here. I've learned more about RLS and how to deal with it from this site than all other sources combined.

I do take Propranolol for mild essential tremor, which it helps, but I can't say that it's ever helped my RLS. I initially treated my RLS with oxycodone (25 mg/day) which certainly helped, but I wasn't keen on continuing that indefinitely. Someone(s) on this site suggested that kratom had helped them immensely, so I found some pure unadulterated kratom through an on-line vendor and tried it. The result for me was near-miraculous. I was able to drop the oxycodone in a single day with no side effects, and I got better RLS relief from the kratom than from the oxy. It also is gentler on my body. I understand that kratom is used by thousands (maybe millions) worldwide for chronic pain. I realize this is slightly off-point of your request, but wanted to mention it in case you hadn't heard of it.

Best wishes for much success!

[involuntarydancer in reply to Dougg]

I too find kratom very helpful. I experience fewer side effects on kratom than I did on opioids (central sleep apnea, opioid induced alerting, daytime withdrawals from the previous evening's dose and general fatigue are all much less pronounced with kratom). I also find it much less traumatic to withdraw from kratom than from opioids.

That said, I do now use a small dose of buprenorphine (as Lottem says, this is suboxone without the naloxone) each evening to keep my kratom dose low and it seems to be effective.

[CookiePooki]

First thank you for serving our country!!! And I am so pleased that you know The Lord Jesus Christ and give Him the praise he so deserves. I am taking tramadol and without it my legs and arms go nuts!! I believe you should do whatever it takes as long as you have no other side effects that could be worse. I pray for my healing, but so far the Lord has not healed me. God bless you. I hope we meet in heaven some day. I cannot give any feedback about your current meds but will remember you in my prayers. I'm so sorry about your other pain too. I'm glad you are seeking the medical help you need.

[radair0502 in reply to CookiePooki]

Thank you Cookie… The Lord has taken months and even years to answer some prayers, but His Grace never fails me. Picking up that cross, I have suffered horribly at different times in my life, but in retrospect, it always drew me closer to my Lord and Savior Jesus Christ. Even Although I am a man, I imagine it to be similar to having a baby… All that horrible labor is forgotten when you are graced with a new life in your arms. Please be careful with tramadol… I would literally wean off any opiate, including heroin, than tramadol. Of course it’s been many years since I was on tramadol, so maybe the science has improved. Bless you…

[Nanpat]

I wish you good luck finding some relief and positive treatment. I’m yet to achieve this, still hoping.

I’m in a similar position, 4 yrs on Targin due to herniated discs in back and severe spinal stenosis, also osteoarthritis.

My rls is relentless and painful but the opioids are no longer working, will be looking for some new possibilities also.

[mjc9906]

I share some of your experiences. I am a retired Marine whose RLS became markedly worse after exposure to God knows what in Desert Shirld/Desert Storm. I have replaced a hip and am now three months in to long recovery from rotator cuff surgery on my left shoulder. About a month ago my neurologist switched me to Subutex. So far (30 days or so) I haven’t had a bad night. I don’t know how long the benefits will last, but I can sleep again and my wife says I don’t kick. Good luck and Semper Fi

[radair0502 in reply to mjc9906]

Semper Fi from an Army guy… my best friend is a former bird colonel in the USMC. I was a lowly enlisted guy… although E-5 at 18 ain’t bad. (Not an NCO for long… I told my 1st sergeant off not long after he ran out of his hooch with his toy poodle and a Kodak camera during a rocket attack. He was a real piece of work… I suppose I should pray for him Just to be clear, I have nothing against toy poodles or cameras… there is a time and place for everything. 🙄

Thanks for your service brother and Bless you.

[mjc9906 in reply to radair0502]

Any rank and any service is all good. I preferred enlisted Marines over Field Grade officers in the Marine Corps, and I damn sure prefer them over General Grade officers any time any place. I hope your RLS is better. Subutex has been a lifesaver for me.