Restless Legs Syndrome (RLS) Discussion Board

Hey guys, I was diagnosed last fall with stage 4 stomach cancer. I went on the chemo pill in Dec and operated on in April - stomach tumor out, spleen out, tip of pancreas out, liver smooth and ok. Pathology reports said no cancer cells detected so we all celebrated that big time! Feeling great but still recuperating. In the past week or two my RLS has gotten worse. My standard 3,000 mg of Gabapentin (taken 5pm on) isn’t working very well now. Symptoms are beginning around 2 in the afternoon instead of 5 or 6 and I wake up at 3 in the morning unable to lay in the bed. On the evenings I take 5mg of oxy for stomach pain, I sleep all night. I contacted my gp so I’ll see what he says.

So that’s my story.

Often with surgery, you lose enough blood that your ferritin levels drop to the point where your RLS gets worse. Have your GP do iron tests, including ferritin, and hopefully you will be low enough that they can justify giving you an iron infusion. In the meantime, taking an oral iron supplement can't hurt. You need a supplement that provides 65mg equivalents of iron each day. Given your existing stomach issues, you might want to investigate taking one of the "gentle" iron supplements such as iron glycinate rather than iron sulfate plus vitamin C.

Rustsmith wrote: ↑

Sat May 20, 2023 11:55 pm

Often with surgery, you lose enough blood that your ferritin levels drop to the point where your RLS gets worse. Have your GP do iron tests, including ferritin, and hopefully you will be low enough that they can justify giving you an iron infusion. In the meantime, taking an oral iron supplement can't hurt. You need a supplement that provides 65mg equivalents of iron each day. Given your existing stomach issues, you might want to investigate taking one of the "gentle" iron supplements such as iron glycinate rather than iron sulfate plus vitamin C.

I don't have iron results but my blood looks like this: RBC 3.80 M/ul (low), Hemoglobin 11.4 g/dl (low), Hematocrit 36% (low). Blood in urine "Large".

I'm now taking an iron supplement. Thank you.

Ask your GP for a referral to a hematologist. With low iron levels, it makes you a good candidate for an iron infusion, which should bring your ferritin levels up in a matter of a couple of weeks (as opposed to months for oral iron) and that may very well help reduce your RLS back to where it was before the surgery.

I'll ask, thanks. (smiles)

Hey Steve, I sent a message to my GP about the iron deficiency but he ignored it focusing on another question I had in the same message. I remember mentioning iron to him a few years ago but he shrugged off the notion. I don't think he's an iron fan. I read that the dose for iron for RLS sufferers is over 300mg so I've upped my dose to about 200mg splitting the difference.

The normal recommendation for oral iron supplements is to take 65mg equivalents every day. If using iron sulfate, that is 325mg and should be taken with vitamin C on an empty stomach. If taking one of the "gentle" iron products, such as iron glycinate, the vitamin C isn't necessary but it still needs to be taken on an empty stomach.

It is also important not to take a thyroid med or one of the other minerals (calcium, magnesium or zinc) at the same time. Iron and thyroid meds interact so that neither one works. As for the other minerals, they block the adsorption of iron. This can be important if iron is causing stomach upset because antacids, like Tums, are basically a mixture of calcium and magnesium.

Ok a little confusing but with iron sulfate 65mg (ferrous Sulfate 365mg) I take one tablet a day. Have I got it?

Yes, along with a vitamin C and midway between meals so that your stomach is empty.

Here's how last night went: 5mg oxy yesterday around 3pm. Forgot gabapentin dose until midnight (my fault) when symptoms set in. Did catchup on gaby. Sleep at 2am. Woke at 4am with bad symptoms. Tried an extra 1200 mg Gabapentin but didn't help. Finally took 5mg oxy at 6am and symptoms disappeared.

Doctor prescribed 1 month oxy 30 pills. I have 3 left over from previous script but I have to be careful. Another 5mg today if I want to sleep tonight.

What's annoying is I have 30 oxys to last 30 days. But on occasion (rare) I need one to treat the pain from my operation. So the prescription doesn't quite go the whole month. But hey, we are doing our part to prevent addiction.

I'm currently on 10 mg oxy a day and recovering from my 2nd cancer operation (lobectomy). It's not quite enough but Doc won't go higher dose. He suggested I go on Requip. I believe I tried that before without result. Any thoughts? I don't want to stop the 10mg oxy.

Brynmr wrote: ↑

Fri Feb 23, 2024 8:36 pm

I'm currently on 10 mg oxy a day and recovering from my 2nd cancer operation (lobectomy). It's not quite enough but Doc won't go higher dose. He suggested I go on Requip. I believe I tried that before without result. Any thoughts? I don't want to stop the 10mg oxy.

I hope the recovery is going well, Brynmr. It is SO frustrating when they won't listen and are so afraid of opioids I get being careful, but withholding treatment that works is immoral, in my opinion. Have you shared any relevant info about opioids working for RLS/WED?

ViewsAskew wrote: ↑

Fri Feb 23, 2024 11:16 pm

Brynmr wrote: ↑

Fri Feb 23, 2024 8:36 pm

I'm currently on 10 mg oxy a day and recovering from my 2nd cancer operation (lobectomy). It's not quite enough but Doc won't go higher dose. He suggested I go on Requip. I believe I tried that before without result. Any thoughts? I don't want to stop the 10mg oxy.

I hope the recovery is going well, Brynmr. It is SO frustrating when they won't listen and are so afraid of opioids I get being careful, but withholding treatment that works is immoral, in my opinion. Have you shared any relevant info about opioids working for RLS/WED?

Thank you. This recovery is trough. but I'll get through it. I haven't shared info with my doc. I kinda think he's up on it but maybe I'm just naive. I'll try this Reqiup and see how it goes. Honestly, I'm pretty tired of all the oxy. At least I don't need it for post-op pain.

Anyone know how to increase the font size here. Eyesight not so good.

You can change the font size on most Windows pages by holding down the CTRL key and hitting the + key. Hitting the "-" key makes the font go down.