Still loopy

[Loopylegs]

Hi everyone, I've been taking 60mg of codeine phosphate for the past 6 months but it's not working anymore, I really don't want to take anymore than that, I had a hard enough time getting it off my doctor, I did iron therapy for the past 2 years after blood iron tests came back low, I've since got my iron up to a good level and in fairness the rls which was in my arms, legs, shoulders all day... is now only in my legs from my knees to my ankles, which usually starts crawling late at night, I'm just not getting sleep and I'm finding it very debilitating, I'm 47, I've had rls since my teens, I augmented on dopamine agonists, tramadol causes sleep apnea because I'm asthmatic, gabapentin also disturbed my breathing, lyrica sent me loopy, my doc won't give me clonazepam, I'm on magnesium citrate and other multivitamins, I've done everything except the soap under the sheet because it makes no sense, is there anything else I can do? I really thought I had it under control with the codeine phosphate, how much is safe to take at night? With my breathing being compromised I'm afraid to take tapentadol, it's the only thing I haven't tried, I hate having to take drugs but I'd do anything to sleep, I rarely drink coffee, which I love and I gave up alcohol which use to drive my rls mad, I really appreciate all the advice I've received here, especially from Manerva.

[involuntarydancer]

Your situation is difficult because of the opioid induced central sleep apnea, complicated by asthma. If it weren't for that I would suggest temgesic (buprenorphine) as so many people on here have had good experiences with it. Do you find that codeine is less likely to cause sleep apnea than tramadol? I had previously thought that if one opioid caused it, all would (I suffer from this myself).

Could you try a combination of drugs - each at a low dose so that side effects were less pronounced? I use a system where I take a low dose of pramipexole (I took two years off it after a horrendous withdrawal following augmentation after 10 years of an ever increasing dose) combined with a low dose of opioid (temgesic) or kratom. My serum ferritin is at 245 following an iron infusion. I feel that the infusion helped a little with my rls and also protects to a certain extent against augmentation. I have been on this system or variations of it, with occasional breaks, for two years now and it continues to work well.

I hope you find something that works. 47 is very young - you have a lot of life left and it is so difficult if sleep is constantly interrupted.

[Loopylegs in reply to involuntarydancer]

Thanks for the advice! I can tolerate the codeine but if I take over 50mg of tramadol it affects my breathing, last night I took 37.5mg of tramadol which also contained paracetamol and I took 15mg of codeine phosphate and I slept last night, I wonder is it ok to be mixing these opiates? Tramadol stopped working before so I stopped taking it, perhaps trying different combinations might work

[Cal66 in reply to involuntarydancer]

HiLoopylegs,

Although, I have had rls symptoms from late teens I haven't been officially diagnosed but I do have Sle, for which I take 100mg Tramadol 4 × daily for pain. However, my sister & I both have Asthma. My sister's is severe we both take Amitriptyline to help sleep.sue has Fibro but I personally take 35mg to 40mg depending upon pain. This works by helping to relax your muscles thus allowing you to sleep. Amitriptyline may not agree with you, but I know that there is another type called Nortriptyline, it may be worth a try.

I hope that you find something to give you some relief & get a good night's sleep.

[Loopylegs in reply to Cal66]

Thanks for the advice, I did try amytriplitine 25mg but it made my rls worse, but at the time I had rls everywhere, perhaps now that it's only in my legs it might be worth trying it again maybe a lower dose

[Joolsg in reply to Loopylegs]

Amitriptyline worsens RLS for 99% of sufferers and is on the list of contraindications on all RLS sites. It sent mine crazy & my neurologist just said ‘ oh yes, that can happen!’

[Loopylegs in reply to Joolsg]

Yes I vaguely remember them sending my rls mad alright! I got loads of info from involuntary dancer, so going to try my GP for a more potent opioid, I just took a tapentadol 50mg early to see how if it reacts with my breathing, so far so good!

[Joolsg in reply to Loopylegs]

Hope it works.🤞

[Joolsg]

I agree with Involuntary Dancer. Codeine is the weakest opioid & does seem to lose effectiveness.

If opioids are not an option & the alpha2delta ligands don’t agree with you - a very low dose of a DA may be your only option.

Have you tried any opioid apart from tramadol & codeine? Maybe if you monitored with a CPAP machine it might help,

[Loopylegs in reply to Joolsg]

I'm in ireland and I had to change doctors just to get codeine, not a chance they'll give me anything stronger, most doctors know very little about rls, I have tapentadol that my friend gave me, she got them for pain relief after a car crash, but the warning is not to take if u suffer with breathing problems. Than kjs for the advice

[Joolsg in reply to Loopylegs]

Involuntary Dancer is in Dublin. Send her a message. Her Doctor is more helpful.Sadly most doctors in most countries are the same- no knowledge of RLS or the meds to treat it.

[Renaul]

I found taking two paracetamol with 60mg codeine worked well for 4 hours. I have now changed to Temgesic 200mcg at night.I will still use the codeine earlier in the day if I need it.

[Loopylegs in reply to Renaul]

I had been taking tylex which is the same as 2 paracetamol & 60mg codeine but changed to codeine phosphate as I didn't want to be taking paracetamol when it's the codeine that stops the rls, do u think the paracetamol helps?

[Renaul in reply to Loopylegs]

I found the codeine combined with paracetamol to be more effective., so for me, yes, it did help.

[captkirk]

Magnesium citrate worked for me. Two a day 150mg capsules and one Calcium magnesium at night before bed 333/167mg

[Loopylegs in reply to captkirk]

I'm on calcium & magnesium citrate, vit d, b complex, probiotic, iron and omega oil, I've taken them for years, I take a break now and again from the b complex because blood tests show my b12 levels are very high, I've been referred to a sleep specialist who has a lot of experience in rls so fingers crossed I'll get sorted!

[Sshifflett2]

Sugar and carbs and caffeine makes rls worse go to a sleep dr they might do the klonipine