Pain in legs at night and Pregabalin

[abby1003]

Hello and thank you again to everyone for their insight.

Quick background: with the help and advice of the members here, I slowly weaned off pramipexole (PRAM) and have been taking 300mg of pregabalin in the evening. I have been "off" PRAM for 5/6 weeks. The pregabalin is not working as well as the PRAM and I'm guessing it might just take some time? I do not feel like I need to get up and move my legs but I do feel a need to move them in bed (which is keeping me awake - I do eventually fall asleep). HOWEVER, I have been waking up from discomfort maybe 3/4 times a week around midnight and end up going out to the family room to find something to watch for 2 hours or so. The pain in my legs which seems to develop in the evening is pretty awful. (I do have OA in a lot of my joints and typically take Tylenol and/or Celebrex). Most of the time in the evenings, my knees ache/hurt and I get horrible shin pain (they are not typical shin splints). I am not sure if the RLS is causing this pain or if it's something else. I don't seem to have it during the day.

Does anyone have experience with this type of pain/discomfort from RLS?

I'm also wondering if the pregabalin is going to be the right med for me. Maybe it will just take a little more time to work? (I usually take a sleeping pill and sometimes will eat a THC gummy - even with ALL of that, I'm sill not "comfortable".

Many thanks!

[SueJohnson]

If you are talking about muscle pain it might be from the pregabalin or it could be from your withdrawal from pramipexole.

That helps a lot doesn't it?😀

[abby1003 in reply to SueJohnson]

Hi Sue, I've had all those pains before switching to pregabalin but they seem to be much worse - who knows...

[SueJohnson in reply to abby1003]

Then it is probably from the withdrawal in which case it will get better.

[Joolsg]

It's so soon after withdrawal that you will still be experiencing withdrawals.I would stick with the pregabalin for another 4 to 6 weeks and if you are still not getting cover, you can then discuss switching to a low dose opioid.

[abby1003 in reply to Joolsg]

Thank you, that's relieving to hear. I will keep my fingers crossed. : )

[ChickenTwisty]

Hi, FYI the reference to Australian guidelines are not in fact guidelines, it is a paper published. You can read more on the Australian state of play here healthunlocked.com/rlsuk/po... here is some of what I sent my GP, I was focusing on my augmentation (and it worked, got my buprenorphine dose increased yesterday)....

Current guidance

remains the Mayo Clinic Proceedings (2021) this was what was in place when I went to the QEH mayoclinicproceedings.org/a...

November 2023

AJGP - www1.racgp.org.au/ajgp/2023...

March 2024

Draft American Academy of Sleep Medicine Clinical Practice Guidelines released aasm.org/wp-content/uploads...

Video accompanying draft guidelines youtube.com/watch?v=LbTrhIH...(Not working as expected?)

~31:00 mentions opiods ~ 31:26 high quality randomised controlled buprenorphine to be released soon

May 2024

4 year longitudinal study – opioids are low risk of abuse for RLS “Median daily opioid dose is also unchanged, at 30 MME (equivalent to methadone 7.5 mg or oxycodone 20 mg). median does 30 MME” (Chat GPT tells me a 10mcg patch is 1.6 MME, but I don’t really trust it) academic.oup.com/sleep/arti...

[FLAME43]

uk vets get benefits and release from employment because of RLS article herewith Restless legs syndrome (RLS) is a condition that may qualify veterans for a VA rating if they can prove a service connection. In many cases, veterans with RLS have other underlying or related conditions (sleep apnea or PTSD, for example) that may also qualify for VA disability benefits.