my story

I live in the US and have had RLS and peripheral neuropathy for a number of years and controlled it using tramadol. My doctor took me off of it because of opiate regulations. After trying and failing at buprenorphine, that doctor decided that since I was 80 years old, had been taking a low dose of Tramadol for years that I was at no risk for addiction so he prescribed it again. Unfortunately he was in the business of getting people off drugs and not prescribing, I had to find a new doctor. The new doctor said she would prescribe them, but I am getting the feeling that she has changed her mind. For the RLS she prescribed Ropinerole and I had bad side effects so I stopped taking it and got bad withdrawal, which I am now controlling with buspar. Now the RLS is every night night several times and am not getting much sleep. I try stopping it with walking, massaging my feet, using heat and rubbing my feet/ ankle with Topricin. These don’t work very well. I would like to try others. PS. I am low in iron and recently started ferrous sulfate.

[Madlegs1]

I am so so sorry for your story.

At your age you are treated intolerably. It is beyond comprehension how supposedly intelligent medical people treat the old sick patients in their care.

Ok - rant over.🥵

Can you find any doctor in your area who will put you back on Tramadol?

Is codeine available in your part of the world?

Where in the states are you. We have people who are knowledgeable and from there who may be able to put you in touch with some help.

All the best.

[Hidden in reply to Madlegs1]

all the doctors I’ve been to have the same issues with Tramadol. My newest doctor said she would prescribe tramadol but she started saying things that make me think she will not. I live in Mukilteo Washington

[Jumpey in reply to Hidden]

I'm so sorry you are suffering and have been treated so inhumanly. If you have very low iron you could ask for an infusion. You could also try gabapentin or pregabalin.Huge good luck.

[DicCarlson]

Well, the good news is that you are off the Ropinrole (a dead end street anyway). It could well be an iron deficiency causing the RLS - do continue with the supplementation. If you experience constipation, Ferrous Bisglycinate Chelate is a better choice. You may consider showing your doctor the latest treatment options detailed in the Mayo Clinic proceedings...

mayoclinicproceedings.org/a...

[Hidden in reply to DicCarlson]

I take magnesium at night and it balances out the iron for me.

[Joolsg]

I'm so sorry you are struggling so much and are having difficulty accessing decent treatment.Washington state doesn't have any Centres of Excellence but if you join rls.org they do have local support groups and can recommend local doctors.

Have a look at Dr Berkowski's website.

relacshealth.com/

He may be able to direct you to someone in Washington.

Tramadol works well for many and if it worked for you years ago, it will probably work now.

You say Buprenorphine didn't help. Did you have bad side effects?

As your iron is low, you would definitely benefit from an iron infusion and you should push for that.

The Mayo Clinic Algorithm now has iron as first line treatment for RLS.

Show your doctors the link.

mayoclinicproceedings.org/a...

[Beckonwood]

I had problems with my primary care doctor prescribing oxycodone for me. I had used miripex for years and was taking more but not getting the relief I needed. I started on oxycodone which I had been taking for another problem and found it worked. Because my primary care doctor refused to prescribe the oxycodone for me I found a pain management center (Reliveus) which I see on a monthly basis and get my prescription through them. If you have a place near you why not try them.

[Hidden in reply to Beckonwood]

I went to a pain doctor who prescribed buprenorphine which worked amazingly well, but I had bad side effects and he decided I should go back on Tramadol since I didn’t have any side effects. His practice is about getting addicted people off of drugs and chronic pain. He doesn’t do prescribing other meds so I had to find another doctor.

[FlintHills]

I am so sorry that you are going through an unnecessary struggle, the opiod crisis has caused this, therefor Trammadol was thrown into the formulary. Thank god my doctors know better, and trammadol is not an opiod at all.

[shaughnna]

I too am sick of these mds who would rather see you suffer than treat your condition. I agree that other methods should be tried first, but come on….

I was wondering if your RLS was just uncontrolled movements or do you also have severe pain.

I found what worked for me was only 2 mg of suboxone.

Good luck

Shaughnna

[Hidden]

I don’t have pain with the RLS, but have occasional pain from the peripheral neuropathy in my feet and legs. I definitely have chronic pain elsewhere. I tried buprenorphine but I had side effects and couldn’t continue taking it. It worked great for RLS and the neuropathy.