tortuous world of pain

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 and calm down the nerve tugging pain 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 gob smacked. 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 buprenorphine 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 , this site has kept me alive.

I want my life back……….

[blizzard2014]

I've read that Australia is a very hard place to get pain meds. It's getting that way here in the states too. I would suggest you simply pretend to be an addict to go in and get that med. I know it's not the best way to get your chronic pain treated, but sometimes you have to flip the script on them. I would do the same if I were ever cut off meds. I am under-treated here, but I am fortunate so far that elevating my bad leg all day and not doing any activity can reduce my pain levels. It's a kind of "don't wake the sleeping giant" type of scenario. I can go from a 2 all the way up to a 7 just doing certain activities.

Today, all it took was two hours of work, then 10 minutes sitting on the chair you have to sit in to get blood drawn. My leg was dangling with no support, because the chair was too high. My leg swelled up from circulation issues and I was gritting my teeth trying to get back to the car. A pack of wild dogs could have ran up on me and I'd just have to let them eat me. I was done. forced myself to go to 1 super-market and that was it. Now I will pay for it tonight and maybe tomorrow. I was getting excited as the drive to work was not that bad. I almost felt like my old self, because i'd been resting up for two days. I used to be a truck driver and miss driving on the road. But I was quickly reminded how much I've deteriorated since my diagnosis. Apparently I have bilateral sensory and motor polyneuropathy, but my bad leg is the leg that had all the blood clots. I hope you can get access to the med that works for you. I don't understand why they're punishing pain patients for what addicts do.