Torturous world of RLS

I have no words, I have been to see 2 pain specialists, 2 neurologists for ongoing nerve damage pain, back pain and restless leg pain and symptoms..e.g continual torturing tugging, electric prod like pain and jerking of whole limb. I discovered when I had my last spinal operation that the Buprenorphine 0.2mcgs tablets they put me on seemed to ease off the restless leg torture a little but not quite strong enough to knock it out completely. The Drs are ok at prescribing these but refuse to prescribe the other dose of Buprenorphine to sufferers other than drug addicts. I kept taking these when I left hospital, at least they let me sleep for a couple of hours…yes a couple of hours that is all I get, I have no life,my mental health is on rocky ground, living with this torture in my leg and back 24/7 ….I think I have died and gone to hell, no sex life,my husband is affected by this as well, this is not the retirement we planned, he is affected mentally as well, I’m permanently in pain.I have served my country, spent most of my life Nursing caring for others and when my time comes to be cared for I’m thrown onto the shit heap left to rot. Had to resign from my job of nursing which I loved and could of kept doing if Drs would allow another Buprenorphine dose 2mgs called Subutex to be prescribed to pain sufferers. Well that is a big fat NO!! DRUG ADDICTS ONLY CAN ACCESS THIS DRUG…….GOBSMACKED, I SUFFER AND HAVE NO LIFE AND WANT NO LIFE ANYMORE, WHILE THE DRS HAND OUT FREELY AT DRUG CLINICS TO DRUG ADDICTS THE LIFE SAVING DRUG FOR ME, BUT SPECIALISTS AND GPS REFUSE TO PRESCRIBE TO US SUFFERING. I can’t believe it…….they may as well have signed my death certificate when they refused me this life saving dose. It is the same drug I’m on but in a higher dose….I don’t understand it???

Like I said beforeI can't believe they won't prescribe Subutex to a suffering chronic pain sufferer, but freely give it out to drug addicts.......I'm just gobsmacked. There is a drug out there that could potentially stop me from jumping off a bridge but they won't give it to me. They look at me as if I'm a drug seeker.

It seems counter-intuitive and unfair that person addicted to opiates can obtain buprenophine at a constant prescribed dose, to enable them to live a 'productive' life, (read Employed), whereas the person in chronic pain is denied the same drug, due to fears of addiction.

What they refuse to see is that by allowing people to access drugs/medications - even if addictive - would potentially cost the government/community LESS.

A functioning person is more likely to eat better, exercise more, smoke/drink less, have better mental health, even if they have an addiction.

But they don't see it like that...and it is VERY frustrating !!!

Why is Subutex only available for drug addicts to access? I'm am forced to take multiple Temgesic 0.2mcgs tablets a day ( which causes nausea taking a lot of these) to keep my nerve pain and restless legs at a bearable level that I don't jump off the bridge, when I could take one tablet of Subutex 2mgs and be at peace.....I don't understand. The drs are more than willing to prescribe endone which is more dangerous than Subutex.....very confused.

If it wasn’t for Shumbah on healthunlocked I would not be here. She has been amazing….what a wonderful human being, doesn’t know me from a bar of soap but has and is there for me every day. She has sent me stuff to try, put me in contact with drs that could help and even sent me little presents to cheer me up. She rang me nearly every day when she was on holidays…..my god, what a loving amazing person…..she knew I was on the border of not being here and took the time out of her days on her relaxing holiday to call me and support me…xx If only we had Drs like that. She also put me onto a site in the USA that sells amazing cream for restless legs, she sent me oils to try…..she has helped me to stay alive.

Now over the last month I have been talking with my new gp about the norspan patches, she put me on the 15mcgs one a month ago to see how I went as in Tasmania can’t get prescribed Subutex. I also started getting acupuncture two weeks ago. The acupuncture seems to be easing the leg off a bit to bearable, so maybe people out there that haven’t tried it yet, give it a go, it might work for you. I made a decision to try natural path for a month and see what happens. So Last week I started to cut down the norspan patch and have acupuncture twice a week……early days yet…..will keep you posted. Mind you it is 26th today and last night I got about 2 hours sleep, my leg tugged and pulled and ached all night, was permanently in drenching sweat , ( the patches cause these I think), exhausted today and a bit down in the dumps……but I’m still going to keep going for another couple of weeks and give this plan a chance……it would be great to get off the patches and stop continually sweating and having to change clothes twice a night and day.

My history started in 2019 with my first spinal fusion, my life just went downhill from there. The restless legs and nerve damage happened in 2022, I have been living with nightmare since then, only got given temgesic in March 2023 and that was for post op pain not restless legs or nerve pain. The pain specialists, neurologists would not listen to me. My pain specialist wrote a letter to the gp saying I was a drug addict because I asked for Subutex to stop my agony. The neurologist just kept prescribing the Gaba and lyrica that I was allergic to, when he ran out of those drugs for me to try, he said there is nothing left I can do for you and signed me off the books. I was on my own, in a world of agony and torture. I was googling one day and came across healthunlocked and saw Shumbah and Jools posts and messaged Shumbah and then my world changed when this beautiful person came into it and kept me on the earth. She and Jools work so hard to bring attention to this horrible condition , but they are 2 people trying to get it out there in the world…….all of us here have to help them spread the word, share your stories on Shumbah’s Instagram page, or write your story and send it to Shumbah or Jools.

I want my life back……….

[EYESWIDEOPEN17]

Hello there! I’m so sorry to hear of your troubles with RLS. My trouble started in 2015 with the burning and awful aching pain. Mine hit me worse at night. Oh how I would cry begging someone to just cut my leg off. I say I’m a person who can tolerate a high amount of pain but this was unbearable. My now ex wife would say when I did get to sleep I would whine all night. You can read my story on here I think it’s still there. I was sent an email to see if I could help. So you can’t take gabapentin and lyrica? Doesn’t surprise me! I can’t take them either. My first pm doc put me on the gabby and the side effects were so bad I couldn’t even speak yet I was supposed to work for a very high stress company in a very high stress position. The combo wasn’t a good thing at all. I told the doc it made me feel stupid. I would say things that didn’t make any sense at all. Each time I sat down with a client I would warn them ahead of time I was taking a new medication that might cause some crazy behavior but trust it was just a side effect and I still had control of my brain. Just not the talking part. That was a lie! I’d have so many irrational thoughts. That was taking 900mg per day twice a day. It caused me to balloon up too with fluid. I went to the UK for three weeks to visit my new granddaughter and the 12hr plane ride was debilitating. I thought my skin was going to split open. I looked like a thigh but bigger all the way down to my toes. Crying all the time because of the pain. I asked my doc to try something else. I couldn’t function like this. So here came Lyrica!! The new and improved gabapentin!! Same medicine it’s just delivered to the body differently. The side effects were minimal also I was told. Ok let’s try it! Oh did I also mention the stuttering? Not being able to find a word when you know what it is. Just won’t come out of your mouth. So I tried the “wonder drug” lyrica! Gonna solve all my problems AND I’d get my focus back at work. 😂 October 2016 I went on vacation to Maui, Hawaii. While I was there I felt the discs at L3,4&5 start rupturing. What’s it feel like you ask? 🤦‍♀️ like something RIPPING and BURNING you in half! PLUS I was having cervical and thoracic pain that was/is at a 7-8 daily. Fast forward until mid November, the pm doc was giving me this compounded pain cream I was to put on anytime my pain being more than comfortable. That was great if I had someone put it on me. I was about to leave for work and the pain that hit me put me on my knees. Immediately. My wife took me to the ER where I stayed all day! Finally I got them to do an mri on my spine. Well what do you know? Immediate surgery as soon as they could get me scheduled. I had fusion surgery on Nov 22,2016. Got fired from my first pm doctor. Was referred to another that I have until this day. She asked me if I’d ever tried Horizant for the nerve pain. It too is a form of gabapentin I’m told. Leery I agree to try it. She started me out on a lower dose and over the next few weeks I started not having so many RLS attacks or the hot coals being poured down the inside of my leg. I’m still taking the horizant. I take 1500mg/day. Plus everything else. The weather usually gets past the drug and causes the pain. I can stand up on my own, drive a car, just about anything within reason. My life 5 open back INVASIVE SURGERIES later is a daily struggle but nothing like with gabby and lyrica. My speech still stammers some and a lot of the time I can’t find the words I want to say. I just calm down and try not to get so frustrated. I’ve succumbed to the fact I’m always going to hurt. Try Horizant, there is not a generic form of it in the states so it’s very expensive. She sends it to some specialty pharm that overnights it to me. The pharmacy gets a coupon that brings the price down to $120/mo Incl the overnighting it to me. It’s worth it and I never thought it worked until I ran out once. I don’t run out anymore! Oh and I retain very little fluid unlike with both the gabby and lyrica. Oh! I POUR SWEAT THE SAME WAY! Not to the extent you do anymore but I did. Yes the meds will cause it and yes the drugs are also hard on your teeth. If you havnt noticed yet. Anyway, hope this helps some just know there are others out here that suffer the same kind of pain! Sucks to be in this club huh? 😂

Later

Trayce

[Hidden in reply to EYESWIDEOPEN17]

would you be willing to share your story with Shumbah....she is trying to get awareness out there of our torture we live with. You can send this post to her through chat so she can share it with drs etc.

[EYESWIDEOPEN17 in reply to Hidden]

Oh I don’t mind. Can she not see it? There is so much more I didn’t even say. That was just about my ongoing medicine. The botched surgeries that came before the medicine is horrible.

[Ticki]

Oh my gosh, your story is so heartbreaking and so many others in the same boat and it is wrong very very wrong. I mean under those conditions I would seriously consider acting like I was a drug attic so I could go to the clinics and get the medicine, but I know that’s a long stretch. here in Washington state where I live they won’t prescribe it either, but I fly to California twice a year to one of the best neurologist in the business and he writes me a prescription for the Buprenorphin$ and I had to go up to the highest dose which I was told was 8 mg before I got my life back and have had a life for the last 2 1/2 years because he allowed me to continue up to the highest dose and now that I have been taking it for that long I have cut it in half and only take 4mgs. this censorship on seriously chronic conditions that a lot of us have is just so so very wrong, and we have a dear lady here in the USA who is also putting together stories in a book about the horrors of a restless leg syndrome. You are in my prayers we need to stop being at that jumping off place, It’s a bad place to be. We all deserve a better life and you have help so many others .

[Nycsyd]

Morning just quck summary 0f my life with Willis-Ekbom Disease. I stopped calling it Restless Leg and call it by it's official name. I don't think Restless leg really conveys how bad the suffering is. So mine is very genetic my mm and dad had it and so did both brothers. I was using Cabiser till it stopped working and made things much worse. Went down the Gaberpentin route it was a disaster. Then tried Lyrica witrh modafenil. Slurring sleep attacks, the personality changfes that started when the Cabiser stopped working continued. Weird thoughts, compulsive behaviours, risk taking. Lost my job, nearly lost my marriage.

Started on the Buprenorphine last July within a week everyone notice the change. I stopped falling asleep mid conversation, ddin't slurr anymore and could think and do math again. I started out with getting a 2 week supply of patches. My pain speacialst and GP applied for me to get it monthly and now I have a for week dose.

My wife is an accupunturist and we had limited results( but eveyone is different). I looked at the oral form of buprenorphine b, but you have to take pills all day long to keep up the dosage. Buprehorphine is not perfect for me. I do gwet a bit of low level depression and I am sleepy during the day, but I have my life back.

There are a couple if interesting studies out there so I am keeping my fingers crossed.