feeling defeated

[Muftah36]

I’ve had RLS for a long time and it’s gotten worse over time. So I’ve tried the gamut of drugs from Clonazepam to codeine , Ropinarole, O God that was a nightmare.I’m now on Gabapentin 1500 mg nightly and was on Tramadol 200 nightly till recently when it was switched to hydromorphone 1mg every 4 hrs. I have not had a full nights sleep in several years and I know these readers know how that wears you down. I’ve had other issues as a result , like chronic fatigue. When the legs wake me , every couple of hours , it takes me from 15-30 min to settle , sometimes more or less. I’m feeling so compromised and it’s really getting to me. I’m losing the battle and I don’t know where to turn . I have a very good family dr. And she arranged an iron infusion which brought my Ferritin level up to over 400. I had so hoped this would make a difference for me but it has not. I have tried so many things and seen so many health personnel , physio, massage , homeopaths, acupuncturist without improvement. I follow a anti inflammatory diet, with no alcohol whatsoever ever, no caffeine, gluten avoidance . I know some of this is helpful but I still have major issues. I’ve tried CBD and Kratom without success. I just don’t know what else there is for me .I’m grateful to express all this to a group of people who understand my state and can identify and maybe offer some suggestion that may improve my lot.

Thankyou for reading this and my apologies for the length of this message.

[SueJohnson]

One reason your gabapentin may not be working is if you are taking it the wrong way. You need to take 600 mg 1-2 hours before bedtime. then 600 mg 4 hours before bedtime as it is not as well absorbed above 600 mg and 300 mg 6 hours before bedtime. If you take magnesium, take it at least 3 hours before gabapentin as it interferes with the absorption of gabapentin. If you are doing this, you may need more gabapentin. Ask your doctor for 100 mg capsules and increase by 100 mg every 2 days until you find the dose that works for you. If you reach 1800 mg then you should probably switch to pregabalin as it can be taken all at one time. 1 to 2 hours before bedtime. Then increase by 25 mg until you find the dose that works for you. You can take as much as 600 mg.

[Muftah36 in reply to SueJohnson]

thanks Sue for your informative response and your suggestions. I had already split my Gabapentin dose into 2 and 3 capsules 3-4 hrs apart. I am following a strict diet and I have tried yoga, hot baths which eased my symptoms for a short while, I’ve done yoga aNd used topical magnesium… to which I had a severe topical reaction.

I’m not familiar with the drug dipyridamole but I will talk about it to my dr . She is very good and working with me to find some relief. Since I wrote my previous note here, she has increased my Gabapentin by 300 mg . nightly. There is no change in my symptoms as of yet. I think she will increase the hydromorphone next week if there’s no improvement.

As you requested , the only other OTC supplements I’m taking at this time are Vit D, Probiotics, magnesium , Actonel. I plan to begin Vit B again this week.

Again many thanks for your response and suggestions .I have had many hopeless ,miserable nights but I’m hoping ,as always that things will improve with some of your suggestions and my dr’s help. They have to …..don’t they?

[SueJohnson in reply to Muftah36]

I think you will find that taking them only 2 hours apart will make a big difference.

[SueJohnson]

Another one to try is dipyridamole. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...

[SueJohnson]

Some things that can make RLS symptoms worse for some people are , nicotine, , sugar, carbs, foods high in sodium, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga. Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute

[Hidden]

So sorry to hear that nothing is working for you.

I note that you have been taking Tramadol and hydromorphone (which I’m guessing is an opioid based medication). Opioids can affect sleep architecture meaning that you may not be getting restorative sleep on them, even if they settled your legs.

As Sue suggests, dipyridamole may be an option for you. From my short trial of it, it seemed to work well however I couldn’t get past the headaches it gave me.

Another member on this forum (Arjiji) has had success with transcranial magnetic stimulation.

Like you i've tried literally dozens of therapies/medications. I currently take pregabalin 300mg which works well apart from the daytime side effects.

You mentioned that you experience chronic fatigue. Something that has helped me deal with chronic daytime fatigue (not CFS) is Low Dose Naltrexone. An ultra low dose of it gives me energy and stamina for the day. It shouldn’t be taken with opioids however. I take it in liquid form to minimise any nausea that you can sometimes get.

A colleague of mine used to have extreme sleep difficulties. He didn’t have any limb movement issues however he experienced hundreds of micro-arousals throughout the night.

He adopted a really strict diet of lamb, brown rice and steamed vegetables. And that was all he ate. His sleep difficulties resolved after about 4-6 weeks on this diet. Because it was so successful, he still follows this diet loosely more than ten years on.

That diet is way too hard-core for me but it has always stuck with me that there are solutions out there.

I do hope you find something that works.

[Jumpey]

I can't add to the advice you have already been given.I just wanted to say I empathise with your suffering and wish you huge good luck with finding a solution. X

[Muftah36 in reply to Jumpey]

Thankyou for those kind words. I appreciate it

[jimdundee30]

Ist thing to do is get off CAFFIENE……Ropiarole is prescribed for PARKINSONS…..also Gabaretin is also a drug for PARKINSONS…….STAY AWAY FROM BOTH…..Buy Rooibos tea bags…..any supermarket ….I take 2X Clonazepam…..500micrograms…..and 2x paracetamol…..30 mins before bed…..this works for me…..it may work for you,although what works for me may not work for you…..but worth a try……..like you I have been on so many pills….my RLS only gives me problems going to bed…..it hasn’t effected my sex life in fact it seems to have made my erections stronger and harder…../so that has been a BONUS….I hope this advice helps…..if I can help you with more help and ideas please contact me….even talking things through is sometimes a big help…..I am here for you if you need me…… all the best JIM WATT

[SueJohnson in reply to jimdundee30]

Gabapentin is not used for Parkinson's. It is the first line treatment for RLs.

[jimdundee30 in reply to SueJohnson]

yes it is you are 100% Wrong

[SueJohnson in reply to jimdundee30]

My bad - you are right.

[wildlegs]

sorry for problems, as a RLS guy for the last 30+ years I know what you’re going through. I’ve walked many mile before I could get to sleep. About ten years ago I discovered Tramadol and it was great. I started at 100 mg, then 200 mg and finally 300 mg. That worked great for about 3 years. Then it became difficult to get Tramadol as it is now classed as a opioid. I went back to walking for a few months until my doctor put me on 100 mg of Tramadol and 1 mg of Pramipexole. The combination has been working great since he put me on it six months ago. I’m 78 and it’s nice to be able to sleep without the walking routine. Good luck! I know different drugs affect everyone differently .

[Dougg]

Hi Muftah36.

I'm writing to share my profound sadness of all that you're going through and to let you know my heart is with you. RLS is such a frustrating and draining condition, and those of us who share it with you know the kind of suffering RLS can cause.

I have no magic words of advice, but just want you to know that you're not alone. We hear you.

May your symptoms lighten and may your sleep be deep and restful. 🙏

[Muftah36 in reply to Dougg]

Thank you for your kind words. I appreciate them very much , and they do bring some comfort.

[Weezie99]

Try opioids,. Hydrocodone/Acetaminophen 10/325. You might need to see a Pain Mgt Specialist to get an Rx. Most docs now days are so afraid of the govt that they refuse to advocate and prescribe for their patients.