Restless Legs Syndrome (RLS) Discussion Board

So I gave my GP all the information and link to the Mayo studies. I had previously asked for an increase to my oxy prescription saying I needed to take 15mg a day due to increased symptoms but was denied. Today I told my GP that I only had 7 days of oxy left @15mg a day. Their response: "Your prescription is only written for 5 mg twice a day and you are not due for a refill just yet.He will not be able to call in an early refill if you are taking more than 2 tabs a day". Just yet means March 22, 16 days away. He did grant me an appointment for an iron workup next week. So too he passed me on to a "Pain Management" facility 20 minutes from my home. I'm still waiting on an appointment time with them but I pray it comes soon.

I don't have enough oxy to make it to the 22nd so out of desperation I tried Requip again late last night when symptoms were active. But this time taking double the dosage: .5mg from .25mg (.25mg didn't do anything for me previously). Well, it worked. It got rid of the symptoms but made me feel drugged. I'll gladly take the drugged feeling over symptoms any day. So I'm feeling relieved at the moment.

Well... You got rid of your rls symptoms with .5mg ropinerole and found some peace. When desperate we feel we'd do anything.

Ropinerole actually works better if taken before (perhaps an hour) the time symptoms would be expected rather than when they are active. If done this way is it possible that the previous .25mg Ropinerole might have worked?
It will be difficult making it through to the 22nd.

The Requip works for a given amount of time for a given person, all different, just a good idea to ensure if you were to consider this drug, take the lowest dose possible...anything above 1.0 MG stop taking it..just my opinion..

At noon today (before symptoms began) I took .25mg Requip. It had no effect so symptoms had me reaching for an oxy pill at about 2:00. Tonight I took .5mg Requip at 9:00 but was not as effective as last night. At 1:00 am, an hour ago, I took 5mg oxy and found relief. I may have another appointment at another pain management facility on the 18th. My GP phoned in 2 referrals. But these appointments are just consultations. I doubt any prescriptions will come of them or it.

Rustsmith wrote: ↑

Mon Feb 26, 2024 2:32 pm

When you ask your doctor to check your iron levels, be sure to ask to have your ferritin checked too. Ferritin is not part of the normal blood iron test and is the most important iron criteria for RLS. Further, when you get the results, don't accept a report of "Normal", be sure to the the number. The normal range for anyone who does not have RLS is anything over 20. With RLS, it needs to be over 100.

Ok, test results just in. I haven't spoken to my doctor yet but the Ferritin number is too low at 44 (normal 8-388) if it needs to be over 100. This may explain why my symptoms post op have increased in severity and frequency. Other numbers; TIBC 378 (normal 205-450) and IRON 133 (normal 35-150). I tried uploading the screen shots of the graphs but would not recognize .jpg or .png

As I expected, my doctor said all is normal. Do I look for a specialist? I have an appointment with a pain management facility on the 18th so maybe that will help.

Your doctor has accepted that 20 is normal. We know that an rls sufferer needs to be up around 100. You could show him the Mayo Algorithm in my signature, in particular the section near the top where it refers to this and to the benefits of iron therapy.

I hope that you have better luck with the pain doctor than I had. When my GP was retiring, she gave me a referral to a pain management doctor. I made an appointment and a few days before the appointment, I received an email from the staff telling me that my appointment had been canceled because the doctor does not treat RLS, only pain.

Also, don't be surprised if the doctor wants to wean you off of opioids. That is what many pain doctors do as they try to divert pain patients to other forms of treatment. You might want to share this Mayo publication with him/her at your first appointment. https://www.mayoclinicproceedings.org/a ... X/fulltext

Polar Bear wrote: ↑

Thu Mar 14, 2024 2:06 pm

Your doctor has accepted that 20 is normal. We know that an rls sufferer needs to be up around 100. You could show him the Mayo Algorithm in my signature, in particular the section near the top where it refers to this and to the benefits of iron therapy.

Hello, not sure what you mean by 20. My ferritin level was 44. I'll pass the Mayo findings along to him. I did that before but maybe he didn't read the link. I'll be more specific.

Rustsmith wrote: ↑

Thu Mar 14, 2024 3:01 pm

I hope that you have better luck with the pain doctor than I had. When my GP was retiring, she gave me a referral to a pain management doctor. I made an appointment and a few days before the appointment, I received an email from the staff telling me that my appointment had been canceled because the doctor does not treat RLS, only pain.

Also, don't be surprised if the doctor wants to wean you off of opioids. That is what many pain doctors do as they try to divert pain patients to other forms of treatment. You might want to share this Mayo publication with him/her at your first appointment. https://www.mayoclinicproceedings.org/a ... X/fulltext

That's what I was worried about. On their website's list of issues they treat, there's no mention of RLS and I can't get through on the phone to ask. This is turning into another nightmare. I'll be out of meds on the 22nd.

My apologies. I was thinking of the 20+ that is often accepted as normal. Your ferritin is of course 44.

My GP referred me to Neurology to have my condition evaluated. I had asked for a specialist in treating RLS patients. I'm not sure this is what I got.

TY Betty.

Rustsmith wrote: ↑

Thu Mar 14, 2024 3:01 pm

Also, don't be surprised if the doctor wants to wean you off of opioids. That is what many pain doctors do as they try to divert pain patients to other forms of treatment. You might want to share this Mayo publication with him/her at your first appointment. https://www.mayoclinicproceedings.org/a ... X/fulltext

Maybe they could wean me off suffering RLS symptoms.

Would your doctor be willing to put you on an extended-release Oxy? It is a little bit more expensive but worth it as it would get you through the night, they only come in 10mg and higher though.

I would ask your doctor if they would be willing to put you on a nighttime Oxy ER and see if they are willing, don't bring up the mgs let them prescribe it at the lowest dosage. See if that works.

I am on 5 mgs 4 times a day, but it only lasts 3-4 hours so I was still not sleeping through the night. So my doctor asked if I was willing to try the Oxycotin ER version, which lasts about 8-10 hours. She was the one who realized it was only prescribed in 10 mgs, and she was like oh okay, and prescribed it. It works pretty well, it takes about 2 hours to kick in, but once it does it works great for me.
Lissa