burning legs/feeling extremely cold?

[mmjxc]

my legs currently feel like they’re burning/are freezing, i also have pins and needles. is this a part of RLS? also, would oxycodone help restlessness? or did it only help you guys with sleep/pain? respond ASAP please! i just want to take something to help this. percocet specifically, it’s Oxycodone/Paracetamol. i know it sounds like neuropathy, i just cannot figure out what the hell is wrong with me. i’m so frustrated right now, and i’m anxious all the time over it. i’m constantly worried about when i’ll be in pain/be restless again is. it’s controlling my life. i can’t go anywhere outside of my house besides the doctor’s office because i’m so worried and even that’s pushing it. i think i need to increase my gabapentin from 900 mg per day to 1600 mg per day.

[Micafe]

Hi mmjxc. I can't tell you for sure if those are part of RLS, but I feel them also. I have no idea which of my problems is causing what. I suffer from RLS, Peripheral Neuropathy and Fibromyalgia among other things... 😔. It's crazy...

Recently I started taking Trazodone and it has helped with RLS. At least, I'm sleeping much better. For how long? I have no idea.

Medications seem to help for a while and then the disease comes back with a vengeance... 😥. That has been my experience... Sorry I couldn't help you. This is a cruel disease.

Good luck!

[Hidden in reply to Micafe]

For the sake of anyone else reading this who might get the wrong impression, trazodone does not treat RLS.

Trazodone is an antidepressant and has no effect in RLS. That's its advantage because most other antidepressants can make RLS worse.

Hence if anybody with RLS needs an antidepressant trazodone may be recommended.

However, if you have RLS but don't need an antidepressant, then there's no point in taking trazodone.

[Micafe in reply to Hidden]

Hi Manerva. I understand that.

I was prescribed Trazodone for depression, not for RLS, and since I started taking it I'm being able to sleep much better, meaning the RLS is not waking me up. So, I'm grateful for that.

It still bothers me but it happens mostly in the early evening and sometimes during the day and, after I take it I start feeling sleepy. So, in that regard it is helping and I'm happy with it so far.

I'm coming off Ropinirole very, very slowly as you so kindly advised me to. I haven't had any side effects so far.

Best regards.

[Hidden in reply to Micafe]

I'm sure trazodone can help with sleep as well as depression. Plus it won't make your RLS worse.

Your symptoms earlier in the evening and day will hopefully improve as you reduce the ropinirole.

[Micafe in reply to Hidden]

Thank you so much, Manerva!

I wish you a Merry Christmas... 🤗 🌲🎅

[Hidden in reply to Micafe]

Thank you. Happy Christmas to you too. Hope you have a RLS free new year.

[Micafe in reply to Hidden]

Thank you!!

[Rwall in reply to Micafe]

I feel like I could have written that post, Micafe! Meds, vitamins, lotions all work until my body decides to fight against them. Xanax luckily has helped me sleep, at least for about 5 hours, but it really messes up my thinking ability. I'm hoping, when I go to the Rheumatologist at the end of December, he will be able to shed some light on this misery!

[Micafe in reply to Rwall]

Good luck with your rheumatologist. I'm planning to get an appointment in January. 😋

[mmjxc in reply to Micafe]

yes! it’s so frustrating. i have a million things happening at once and i have no idea where to begin. my neurologist just retired maybe 2-3 weeks ago and the new neurologist he referred me to didn’t have any appointments until march. then i have my primary doctor and he just keeps suggesting ropinirol which i will not be taking. i’m on buspar right now for anxiety, but i might switch to trazodone for both sleep and anxiety.

anyway, there’s a history of fibromyalgia, thyroid and parathyroid issues, and autoimmune disease on my mom’s side, so even though my lab work came back (barely) normal, i’m not convinced i don’t have one of these issues. i’m going to have to keep pushing the doctors until they find something.

and you did help! just knowing that there are other people dealing with something similar is comforting. plus i love seeing what people use to cope/treat stuff like this so i can go research it. so thank you! good luck to you too.

[Micafe in reply to mmjxc]

Yes, it is frustrating because it seems to get worse and worse and there's no cure for any of those things. 🥺

[martino in reply to mmjxc]

I can empathise with you. For the first few years of getting appropriate help foe RLS I had a lot of pain specifically burning on my legs. I am closing in on a diagnosis of small fibre neuropathy and the only treatment is pain management. A nerve conduction test might be helpful for the diagnosis. I am awaiting a skin biopsy which is the most certain test.

[Rwall in reply to martino]

I am also awaiting the results of the biopsy. Preliminary results indicate autoimmune disorder and small fiber damage. I have Hashimotos, so I'm not surprised at that. I do hope that if the autoimmune issues are all treated, it will help the neuropathy. Anyone else have the Hashimotos- RLS connection?

[mmjxc in reply to martino]

good suggestion! i will bring this up next along with a switch to pregabalin. hope that goes well for you!

[Hidden]

The burning, freezing and pins and needles is neuropathy.

It would help if you could get this investigated to see what's causing it.

Oxycodone can help with RLS, As can other opioids. It's the oxycodone that helps NOT the paracetamol.

It also sounds as if your anxiety is out of control and this will be making your RLS worse. Maybe you need help with this.

If you want to increase your gabapentin above 1200mg it would be better to switch to pregabalin.

[Rwall in reply to Hidden]

Minerva, why pregabalin am in for that dose? I'm wondering if I should ask my Neurologist to switch it. Thanks!!!

[Hidden in reply to Rwall]

Gabapentin isn't as easily absorbed as pregabalin and the higher the dose the less the proportion of it is absorbed. At lower doses up to a maximum of 80% of it is absorbed. At higher dose as little as only 20% is absorbed. Doubling the dose for example does NOT double the effectiveness.

Hence above 1200mg increasing the dose has little effect on it increasing its effectiveness.

However pregabalin is more easily absorbed i.e. up to 90% and this is true for any dose. Doubling the dose does double the effectiveness.

Also pregabalin is more potent than gabapebtin, 200mg pregabalin is equivalent to 1200mg gabapentin.

[mmjxc in reply to Hidden]

yeah, that’s what i thought. i’ve been looking into peripheral neuropathy for months, i just have no idea what’s causing it. the docs did lab work, and since that came back okay-ish, they didn’t do too much after that. my primary doctor keeps pushing ropinirole, but i refuse that every time for obvious reasons 😖 i’m going to have to make another appointment with him to request pregabalin. i did know about increased doses being less effective, but the reason i said that is because i don’t know how receptive he’ll be to the idea of me changing meds.

the percocet is the only version of oxycodone i have on hand, so hopefully if i have a really rough night, it’ll help.

and trust me, i know it’s out of control. i’ve been trying to get it under complete control for 5 years. the biggest issue is i don’t have the best insurance, so i don’t have many options when it comes to mental health professionals. someone suggested some supplements on my other post, i’ll see if they help.

can i ask what you take for the RLS? and if you’ve ever tried opioids or opiates for it? totally cool if you don’t want to answer.

[Hidden in reply to mmjxc]

I just take 600mg gabapentin and don't need anything else. I'm very lucky.

I used to take a dopamine agonist and suffered horrendous augmentation for several years.

[mmjxc in reply to Hidden]

oh, well that’s great! very unfortunate that you had to go through augmentation. definitely keeping dopamine agonists at an arms length!

[Hidden in reply to mmjxc]

Good plan

👍

[Crex]

This is exactly what I have.. this burning but freezing sensation in legs and also sometimes in groin and chest. I also get fizzing in legs and face (eg tongue!). Bewildering. Mainly during the day. Sometimes all day. From replies sounds as though this is peripheral neuropathy on top of my rls. Had a lumber discectomy 6 months ago ...

[Hidden]

I’ve had tsl since I was 12 now seventy also affects my arms I would not wish on anyone do to three ops on my hip to failed knee ops I’m on OxyContin that does help also used rick Simpson oil which helps although it’s in capsules the taste is aufull but that’s a small price to pay