More pain than I can bear.

[BellabluePainSucks7]

I have had very painful none diabetic neuropathy for many yrs it was inherited through my mom & her dad, slowly I'm losing my pain meds I was on morphine and Oxycodone for the Breakthrough pain and Neurontin because of addicts that have overdosed which I'm sorry for have caused me to lose my pain meds I no longer have oxycodone and now they want my doctor to take me off of the morphine what is wrong with this world when they think that people don't need pain meds anymore all of a sudden because addicts have abused it it's affecting me in many others I don't know how to live with this pain. I'm so fed up with constant battle from simply needing a relief from my constant pain to being made to feel like I'm a bad person for even asking for relief. I have a great Doc but his hands are tied but people in the front office look at me like I have that plague, all of a sudden now I can't even get my morphine from the pharmacy because of something new my doctor needs to sign so now I've had nothing since last night. I'm so done with this carp. Oxycodone!

[Lyd12]

Is Zydol, i.e. TRamadol, a drug you could have? Was just looking at an old post on here where a sufferer got relief from this drug. I do sympathise, any constant pain cn drive you mad, why should good oeople suffer for the faults of others, surely doctors can use their discretion and prescribe in genuine cases. Best wshes, Irs x

[vespatone in reply to Lyd12]

My Dr's surgery recently took on a new dr to see all the patients who needed opioid pain relief to see how many they could get off them.

When I saw him about my neuropathic pain following a stroke he told me I was going to be taken off them and then gave me a list of alternatives for the medication I had been taking.

They included:

Mindfulness

Cold water swimming

Tens machine

Group walking

Laughter therapy.

I told him this was ridiculous and that pain is nothing to laugh about and thinking about it was the last thing I wanted to do.

I suppose walking with a group to a cold lake for a swim may be nice , I didn't think it was going to help much and the tens machine was fine while it was plugged in only.

The whole idea of taking us off opioids is a fine one to have but please give us a credible alternative.

These Dr's have no idea how cronic 24/7 pain feels otherwise they wouldn't come up with such stupid ideas.

I now go to my hospital consultant about my pain management and told my Dr's surgery they can just deal with my day to day basic health needs.

I know some have abused the pain relief medication in the past but if GPS had grown the balls in the first place to say NO to these NHS time wasters people with proper pain needs wouldn't have to go through the horrors of enforced medication withdrawal. This new policy will send people to look for pain relief on the streets and straight into the hands of drug dealers or people to take drastic measures to be pain free. ... suicide rates will soar and their deaths will be on the hands of the NHS policy makers.

[SecretlyDisabled7 in reply to vespatone]

The suicides here did soar after pain meds were suddenly cut off. Also, some of us work at jobs even with pain, thanks to those meds. So, there is no lake here. Tens gave me more inflammation. How could anyone think we have nothing to do but try to do even a few of the things on the list. I do love mindfulness, and it does feel good, but it is not at all useful for pain. It is just good to be conscious and aware. But I would like the doctors who take away meds to have a few weeks of constant chronic pain the equivalent of mine.

And yes, I have wondered how to get some of the street drugs now and then.

[BellabluePainSucks7 in reply to Lyd12]

100% agree..

[tonyfiorese]

Have been put on morphine for my nerve pain along with Gabapentin and Nabilone, the Nabilone supply is running out, I don't find the morphine working that well and they may try me on Methadone next, I'm looking into CBD oil, but it has to be a high percentage and very low THC, Green Cross(in Canada) has one with 44% CBD and only .7 THC

[Philip in reply to tonyfiorese]

I don’t understand any of that lol.

Sorry lol

Philip.

[Marylyn]

Ask your Dr to check your active b12,folate,ferritin,iron,vit D ,MMA,magnesium levels.Most Drs are not aware severe nerve pain can be from low vitamin b12 levels as the myelin sheath is being stripped off.Serum b12 has to be > 600 otherwise supplements are required now.Frequent injections of b12 will take the pain away.Drs will tell you your peripheral neuropathy is caused by diabetes well both my hubby & I have it & we are not diabetics.View videos on b12awareness.org to see the devastating health issues it causes. Download the info & give to your Dr .

[JaniceMallett in reply to Marylyn]

My disabling neuropathy is caused by Untreated Pernicious Anaemia ( inability to orally absorb B12).

My P.A. Was managed for 35 years, but five years ago I was unable to get the injections I needed for 8 months, developed Peripheral Neuropathy and found out that after 6 months the damage is irreversible. I take daily B12 injections now, and it slows the progression of my neuropathy. More people should be aware of this.

[Marylyn in reply to JaniceMallett]

I am so sorry ,we need to let the medical fraternity how permanent nerve damage results from negligence.Make sure you are taking folate,vit b6 ,multi bcomplex,coQ10,chelated magnesium .There is hope as Dr Dave Carr in the videos was dying & he is back working.Purchase Sally’s Pacholoks book “Could it be B12?” Is a must read for any one with PA.You may be Mthfr which methylcobabalim May be a better choice & also improve healing because of methylation.

[JaniceMallett in reply to Marylyn]

Yes, have read the book and been helped by Pernicious. Anaemia Society since it’s inception.

The one thing I did not know was that after 6 months the nerve damage was irreversible. I had gone 5 months before on just hydroxocobalamin, which does nothing for our family. Then come right when I managed to import cyanocobalamin.

My Dr was negligent in not getting me methylcobalamin from a Compounding Chemist, that is what I take now.

[Jtal19305]

Hi Bella-

I am sorry to hear this. Where do you live? Why is this happening as I have heard that the government is only going after those who take these pain meds for acute pain and not chronic pain. Please clarify? I am also in a chronic pain situation which resulted after a spinal surgery I had 3 years ago. After the back surgery, I immediately had severe burning pain in my left foot. I had a laminectomy at L2-3 on the left side, and a T12-L1 laminectomy, spinal fusion with hardware during the same surgery. The surgery was around 3 hours long, and I was monitored by electrodes during the surgery for any nerve damage. The monitoring report did not pick up anything as far as I could tell from reading the report which was somewhat cut off (not sure why). My surgeon, at MT. Sinai hospital in Miami Beach FL could not provide any answers/reasons to explain the burning in my left foot. The surgery also did not alleviate my burning/numbness pain in my left thigh. Suffice it to say, I have suffered a ton, and was thoroughly confused, upset and worried about being left in this terrible situation. After many post-op consultations with other doctors, ortho and neuro spine surgeons, neurologist, pain specialist, therapist, etc., I still have no answers to explain what occurred. My own surgeon denies anything went wrong during the operations. Post-op MRIs reviewed by other specialists confirm this for the most part; at least, the alignment of the pedicle screws are correct, and I have sufficient strength and full mobility of my legs and feet. I just still have this damn burning and dysthesia/diffuse pain in my feet (especially left foot) and left thigh and somewhat my left calf. The only relief I am able to get is with my general doctor's treatment which includes a mild regime of pain medication (4x10 mg per day) and duloxetine (which I do not think helps). I have tried Lyric for 2 years with no benefit so I weaned off it. I want to wean off duloxetine (60 mg/day) which I intend to do this Summer. That leaves me with the Pain meds, and one med I take for mild high blood pressure. I am (or was) a healthy active 50 year old male, who went to the gym 4-5 a week, bike rides, long walks and swims. I can barely it make through a day without suffering from this pain. Some days are better and some worse. I find sitting too long (like my office job requires me to do) and not being able to get enough rest/sleep makes my pain worse. The pain is so bad that I get depressed at times, and sometimes think how and why I ended up here. I think that the decision I made to get this surgery was the worst decision of my life, but at the time, the doctor made it seem that it was necessary based on the MRI and my sudden onset of symptoms at the time which was leg weakness. I know from viewing my own MRI, that I had advanced stenosis at L2-3, the axial views showed severe compression especially on the left side, although not completely cut off, there was still some space. This was causing my left thigh numbness/pain which I had been living with since 2010. I thought it would just subside but it did not. The disc bulge, bone spurs and stenosis at T12 - L1 was alarming to me. I believe minor curvature of the spine I was diagnosed with as a teen caused my vertebrae and discs to adapt to provide support, hence the bone spurs and protrusion of the disc into the spinal canal area. As T12-L1 is the area of the conus and my surgeon was indicating he noticing some "flattening" of this conus area of the cord, he felt that area needed to be addressed as well. So to make this long story come to an end, I had the surgery, awoke with pain and still have this pain (to a lesser but unacceptable extent) 3 years later. I do not know what I would do without the pain meds, as they actually do provide some relief. Btw, due to the hardware at T12/L1, I am not a good candidate for SCS. If anyone reading this has suggestions, please let me know. I would appreciate any help or guidance. I live in Pennsylvania now, but also visit Florida often.

Thanks

JT

[BellabluePainSucks7 in reply to Jtal19305]

I am in Oregon. I'm a female in my late 50's, but feels like 80's. I'm sorry I'm in so much pain, I have some questions but get back to u .

[SecretlyDisabled7]

I am now in the same situation. I have had chronic pain too many decades and finally found the right combination of meds from a pain clinic that closed. I have been fortunate to have had the same pain meds continued until now. I do not know if I can stand to, want to, survive if I am going to be in the same pain. I was not taking too much, or bad meds. but doing well on medications created for pain. Now I am having to try to figure out how I will move at all, thanks to the new laws about these meds. I tried so many meds before all of this legal creation from those who overdosed, snorted, shot up, etc. I do not know why their lives were that meaningless when I want to continue to have meaning and well-being with my meds. But I do know we all need to do something about the attitudes toward our pain meds.