Not doing well

[RLSLADY]

On naproxen 2 x 500mg a dayWas on co- codamol 2x500 mg a day

Taken off and prescribed 2 x 100 mg tramadol ( knocked me out at first now not effective) for pain & Rls.

Weened off 3x pramepexole a night. Slowly increased pregabalin over months to currently 450mg at first effective, not now.

started breakthrough rls & pain a quite a few weeks back , now horrific pain & now not much sleep at all.

(had sciatica since early June, along with long standing rls, spinal stenosis, osteoarthritis in knees, spine, hips, left shoulder, left hip bursitis , fractured right wrist that set awkward I thought was a sprain. )

A weird symptom!

My left leg is now noticeably shorter ??

I know for certain it wasn't on my 4 visits to a pain clinic over the years.

My consultant said to go for the 4th time when nerve ablation failed, to try again with excersise & re visit my meds & support.

So I'm seeing my gp for a scan result on my hips & lower spine, next week.

I'm in unimaginable pain when I get a flare up of sciatica, it reduces to manageable but never goes away.

I'm going to ask for bloods, my last ferritin was 58 iv been taking gentle iron x 2 alternative nights with pure orange juice for quite sometime. So hoping for an improvement.

I'm doing all I can to try to help myself but failing miserably now.

Iv printed out the mayo proceedings for Buprenorphine, methadone, oxcodone ect to talk to my gp about.

Given all iv said please, is there anything I'm missing that could help ?

Also looked at diet and potential trigger. With a diary nothing food & drink wise I take seems to esacabate my rls ?

I'm at my wits end of late.

Sorry long post, background, meds etc had to added so you see my journey to date.

Help please

Thank you

[RLSLADY]

Edit.. taken off co - codamol and given tramadol.

Iv also tried the strap on massage leg things that vibrate and ones that Inflate to no avail.

Plus a massage gun (that helps a little)

Also tried hot the cold showers on lowers legs.

I'm so so fed up and starting to get despondent and depressed, which is very unlikely me.

Thank you

[SueJohnson]

Spinal stenosis can cause a lot of pain. I know since I have it and from what I've read opioids won't help although they will help your RLS. Since pregabalin did help for awhile, you might want to increase it by 25 mg. You can go as high as 600 mg.

Be sure you are taking at least 65 mg of the gentle iron. Take Lactobacillus plantarum 299v as it helps its absorption. And you can also take apo-lactoferrin which also helps its absorption

[RLSLADY in reply to SueJohnson]

Hello again Sue Thank you so much for your quick reply.

I'll up the pregabalin dose for sure.

There is a weight issue, I'd lost a stone over time with diet and progressing well until pregabalin it went back on oh well better fat & reduced pain.

I'm going to discuss the weight loss injection as lumping 3 extra stone atound can't help.

Have you any thoughts on those ?

I'm definitely taking 65grm of iron.

I'll look up lactobacillus & apo- lactoferritin.

Yes the spinal stenosis has slowly advanced so as I now need a mobility scooter outdoors (when I feel up to going out) and always a stick indoors plus a rollator when I'm on a horrible flare up.

I'm surprised just how much the rollator helps, out doors & indoors and especially in my garden. I want to try use that a lot mire to get moving and hopefully loose a little weight.

I had to put my pride aside to use the mobility help. That was hard lol.

I'm also getting my bathroom converted to a wet room & a higher loo. Iv struggled for ages in there.

Many thanks Sue

[RLSLADY]

To add. I trier Kratom red, 1st night absolutely fabulous on 4mg 2 nd night same 4mg. I could not sleep for over 48 hours, it was awful. That went.in the bin.

Tried skunk (urghhh) in chocolate.

Omg horrific I definitely had too much. Up all night really nauseous and a weird perception of time. Awful, bin.

Tried smoking old fashioned cannabis that looked like a oco cube lol I like that smell. No not for me! Several attempts with different amounts, I hated the feeling plus no pain or rsl relief.

I'm trying hard to help myself.

[SueJohnson in reply to RLSLADY]

At low doses (2 to 6 grams) kratom has a stimulant effect which is why you couldn't sleep. At high doses (8 to 12 grams) it has a sedative effect helping you sleep. You might want to try it again using 8 grams,

[RLSLADY]

* oxo cube, sorry (I can't find an edit on my previous posts, sorry )

[SueJohnson in reply to RLSLADY]

The edit is under more

[Joolsg]

You are a perfect candidate for Buprenorphine. The patch would cover your pain and the RLS.You need to insist on a referral to a knowledgeable neurologist who knows about Buprenorphine.

I suspect your RLS will not respond to iron as it's caused by the spinal problems.

Medical cannabis oil with20%THC would probably help your pain but it's expensive.

So first try to get Buprenorphine patch.

[RLSLADY]

Haha thank you for the edit button.Humm i got the dose so wrong sigh...with kratom. Thought id done my research as well.. tut.

I may give kratom another go I still have a full jar of apple sauce

I'm going to try my best and stand my ground on a referral if my gp cannot or won't prescribe the patches.

I cannot go on like this, I'd rather not be here.

Oh blimey the iron isn't helping I'll keep taking it though. May as well.

I'll look at the cannabis oil.

THC is the high isn't it ? Not sure I'd like that.

Iv tried the oil without THC, CBD oil again no help but at least no high.

I'm thinking with you stenosis is the culprit to a lot of failures and pain.

Sue? What do you think about weight loss injections, I am pre diabetic. Iv read about the side effects, I'm sure after all iv been though I'd cope.

[Joolsg in reply to RLSLADY]

The THC does give a high BUT it's also highly effective at pain relief. You can avoid the high by taking smaller doses. 0.1ml doesn't give a high but stops pain.I do hope you find someone who will agree that you need an alternative medication.