New on here, i am actually the wife of the RLS sufferer. He is not a big computer person so I am sharing what I read and learn with him.

[Climberguy]

New on here, i am actually the wife of the RLS sufferer. He is not a big computer person so I am sharing what I read and learn with him. He has doctor appt in two weeks to ask about some of the meds we have seen on here that have not been offered. Severe RLS most days/nights, worse with every year (age 57 now) affecting working, driving, traveling, etc. Feels up into core and arms at times. Taking Ripinorole and Tramadol, plus CBD's as needed (multiple times a day). Without those things, could not function but they are not controlling it enough to keep going on like this forever. Tried Gabapentin last year but after 4 days, felt so sick like bad flu and doctor verified he must have side effects and had to go off. Has anyone tried a TENS unit? A nurse friend is suggesting that. Also, any luck with Lyrica, Mirapex and Targinact? Those three drugs have not come up with the GP doctor, the Neurologist or the Sleep Disorder specialist at Stanford. If nobody has tried RELAXIS, get on line and look that up. He tried that and it did not work but it supposedly works for a large percentage of people with severe RLS. It is expensive but would be worth it if worked. You need to have a prescription from your doctor to order it. They were honest and sent us the $700 back when he tried it risk free for 30 or more days. This has been a great site to read and bless all of you sufferers. Just being a spouse and watching it is painful enough.... and i feel for all of you!

[involuntarydancer]

Your husband is fortunate to have such a caring partner. Depending on the dose of ropinerole he is on, it is possible that that drug is contributing to the deteriorating symptoms he is experiencing due to augmentation. If so, he will need to reduce and ultimately eliminate that drug which will be a difficult process. Many people find their symptoms improve considerably when they eliminate the dopamine agonist (such as your husband’s ropinerole). Once the dopamine agonist is discontinued other option can be explored. It is recommended not to take another dopamine agonist (such as pramipexole/mirapexin or rotigotine/neupro). Gabapentin/pregabalin (Lyrica) or an opioid is the most usual next step but it is also important to get serum ferritin checked and if it is below 100 to start a supplement. Obviously gabapentin is a less desirable option bearing in mind your husbands experience on it last year but Lyrica may work well, particularly in conjunction with the tramadol he currently takes. There are some good reports of targinact on here also but some people find it difficult to sleep on that drug. It is relatively quick to form a dependency and can be hard to discontinue so is quite a commitment. Sadly with rls all treatments have some downsides to them. There are loads of suggestions of non-pharmaceutical options on here to boost the effect of the drugs also. 20 minutes of a very absorbing activity such as a computer game (reading or paper puzzles are not sufficiently diverting) can afford a couple of hours of reduced symptoms as can 20 minutes of yoga type stretches. Magnesium - as a supplement or a rub - can also be helpful as can very hot or very cold showers/baths. Good luck.

[Climberguy in reply to involuntarydancer]

Thank you so much for all the information! It is reassuring and helpful to be in touch with people who actually have RLS severely and can understand our frustration and plight to find some relief. Have tried Magnesium to no avail, but going to doctor in couple of weeks and will be taking a summary of all the replies and maybe come up with a new plan and get off the "Ropinorole" - seems like i am reading more and more people say get off that drug. Good luck to you too!

[John_naylor]

Augmention on Ropinorole sounds most likely, as involuntarydancer says. Is he taking any other medication? Even cold remedies can make RLS worse.

[Climberguy in reply to John_naylor]

Thank you for responding! He is only taking the ROP and Tramadol. no cold meds or allergy meds. Oh CBD's... they have actually been a help.

[Parminter]

Hello Climberguy

Doctor Mark Buchfuhrer is at the Stanford Sleep Medicine Centre, he is the man you should try to see.

Clearly, your husband is unsuited to his current meds and no wonder - both Ropinirole and Tramadol can cause augmentation. Doctor Buchfuhrer is one of the world's top experts in the use of low-dose opioids for RLS/WED, and it is more than possible that your husband will respond well to either methadone or oxycodone.

Do try it, it may change everything. This misery can be ended quickly.

If you have not yet done so, check out the Southern California RLS Support Group at rlshelp.org, there is a great deal of help there, and information about access to Dr B.

[Climberguy in reply to Parminter]

Wow thank you so much for this info! Tomorrow I am going to all Stanford and see if he can get into this doctor, because that is not the doctor he saw a couple of years ago there. Also will talk to the local doctor in two weeks about getting off the ROP and the TRAM and trying methadone or oxy. Appreciate all of you that took the time to write!!

[Merrilymerrily]

Hi. Very very similar situation. I have a few posts, merrilymerrily ur says... ...but ...my name is actually marcie, ...and I have no idea why it put that name..but my initial post is titled: 13 years of rls hell...over...

Please read it. Iron infusion and getting OFF ROPINEROLE, which I feel was most definitely causing the worst of it...he probably was having augmentation of ropinerole for more than 18 months, and they just kept raising the dose. I'm the wife also...

I found so much help ...and knowledge and compassion on this site.

Please read the comments also, as I have relies ...and more info amongst them. Best of luck. My husband is 59, ...and this terrible thing, RLS, stole his health and happiness and we are so grateful to be in the road to good sleep and health now.

[Climberguy in reply to Merrilymerrily]

Hello Merrilymerrily - thank you for taking the time to write! What is your husband taking now that is working? Or was it the iron situation that solved the problem? Unfortunately, I was hoping when we went to Stanford and the doctor said let's check your iron, that it would be low and a simple fix to get it to normal. Nope! It was totally normal range so..... we will keep plugging along and listening to all this info about augmentation has been so interesting, we did not know about this so need to go in that direction i think of getting off the two drugs he is on, Ropinerole and Tramadol. Is your husband symptom free now?

[involuntarydancer in reply to Climberguy]

Doctors always do this with serum ferritin. They tell you it is ‘normal’ not realizing the significance for rls sufferers. You need to get the actual figure and if it is less than 100 start a supplement. ‘Normal’ can be anything from about 12 up to 300 but rls sufferers need to be over 100 and usually need to continue supplementation indefinitely as, for many, iron tends to leach away spontaneously. If you phone your Doctors surgery they should give you the actual figure.

[Climberguy in reply to involuntarydancer]

OK i will do that! Thank you again!

[Merrilymerrily in reply to Climberguy]

My husband is not on any meds now, and has not slept this good for 13 yrs. He does not take anything. I try to make him eat organic foods and limit processed foods and additives..but hes not great at this....

I know people on here have values listed for "normal" ferritin/iron levels, saying rls sufferers may need to be in the high normal range...I dont recall the values, but I'm sure u can search it on here. He takes a multi vitamin.

I read some interesting stuff about SIBO (small intestine bacterial overgrowth) and its relationship to RLS, as well as other disorders, esp inflammatory types. It was treatable with antibiotic therapy as well as diet. Maybe look into that? I wish you the best of luck.

[Climberguy in reply to Merrilymerrily]

That is fantastic he has been able to get off meds. I will check into that iron situation and the other stuff. Ironically, I have a condition called Hemachromatosis which is a hereditary iron overload disease! So i am very familiar with Ferritin and iron levels as well as saturation etc. I will get what his number was because i did not pay much attention to it when the doctor said it was normal. Thank you!

[TheDoDahMan]

Hi, Climberguy,

Could you tell me which U. S. state you were in when you were prescribed Tramadol? I am in Nevada and am having problems both with being prescribed opiates and also having a pharmacy fulfill such prescription when written. I have been told that the various states have different medical boards, thus some are more difficult than others because of the current opioid hysteria in this country. Thank you!

[Climberguy in reply to TheDoDahMan]

California!

[TheDoDahMan in reply to Climberguy]

Thanks for the quick reply. I haven't done a survey, but being a Las Vegan, I'd lay odds that Cali is one of the better states to live in for medical freedom of the sort we're talking about.