Pain and opiates

[Marnz]

Hi I’m writing in interest to whether other FND and or fibromyalgia suffer severe chronic pain. I’ve found that opiates are most effective in subduing my incredible pain. The problem being that opiates have such bad reputation and doctors being understandably reluctant to offer them it makes it darn near impossible to get help. Yes I’ve tried every form of pain relief and to no avail so at a loss here. Any tips?

[Keepstrong]

Hi Marnz.

Yes I can help you with advice and tips as I have FMS. Fibro Myalgia 20 years an I also have M. E. Myalgia Encephalitis 18 years and few months ago I was diagnosed with NFD Neurological Functional Disorder.

I have a lot of research facts and advice on FMS +M. E through all these years with the assistance of doctors / physiotherapist / occupational Therapist and consultants from all over the globe.

Firstly just to explain about FMS, it dose not take much to set off a flair. Stress is one of the major triggers an though there is no one on this earth who dose not have any kind of stress in their life. We can control how we handle it. This is what also feeds neurological functional disorder too because once your unwell with one of the conditions the other is inclined to picky back on it an join it.

Each causes wide spread pain followed by loss of sleep then that causes fatigue then that causes low motivation and or then depression. Only way to threat a flair of FMS is to have warm showers every day with the jet of the shower spraying in an upwards motion. This helps both the blood flow and releases the trapped muscles in the body plus it will help your lymphatic system drain when you spray an massage jentley while showering to your glands. So up the toes to ankles. Legs up to grinds. Fingers up to wrists. Wrists up to arms to under arms. Chest to sides of under arms. Try have someone do gentle massage with moisturiser upwards on your legs an arms and your back.

Always have a cushion at the end of the base of your back when sitting. Elevate your feet every so often. Search on you tube for chair exercises an do two sets a day.

Drink still water with some lemon juice or any juice you may like the taste of just a Cork full an drink 8 small glasses of the water a day to not only clear an stop your toxins building up but to also replace stail oxygen that's causing your muscles to be fatigued an getting sore or in spasms. An will also help with your neurological disorder too as it's fresh oxygen to your brain an will help your body to receive the messages from your brain. Just finish around 6.30 /7.30PM so you won't have to take trips to the bathroom. This drinking the water will also help your energy emotionally and physically big time.

As to painkillers, I myself only use paracetamol 3 times a day on a bad day. I would also use deep heat cream on very painful spots. Keeping active is so very inportant and so is your food intake. Keep a diary of food you have had that will make you feel bloated or fatigued so you can avoid what it was that made you feel that way. Because some foods actually cause inflammation an also if you eat a lot of junk food and put weight on its extremely hard for people with FMS to lose weight.

So small activity an even gone to end the garden or driveway as you breathe in with your nose and hold your breath for the count of 3 an drop your jaw a little an sigh out through your mouth will help you if you do it a few times.

There is so much more I could tell you but my hands are getting tired typing haha. You can message me privately here anytime. 😊😊😊 Wishing you a very happy positive pain free new week ahead lass. Be well and keep strong. Ce 😊😇🤗

[Marnz in reply to Keepstrong]

Thanks so much keepstrong and glad to know there’s support out there.

[Keepstrong in reply to Marnz]

Any time dear friend. And feel free to private message me here any time. 😊🤗 Sending soft healing hugs with comfort and light. Ce 🤗🤗🤗🤗😇😇😇

[M3rry]

First question - where are you. Each country has different opinions on opiates. The UK is the only country I am aware of that still has heroin as a prescription drug - for late stage cancer pain control.

Next question - how do YOU react to them?

I am fortunate in that I do not have the propensity to have an abuse problem with opiates - which means that I can use them where others cannot.

If you do have problems with opiates - first signal of this is that you keep adding more and more to get the same effect and cannot even think of doing anything without them. If this is you stop using them as quickly as you can - you do not want to live with substance abuse.

If they work for you - great. The next question is which of the many available is best for you. I do not use the same ones my husband does - he uses a 72 hour patch, I have pills. I even know enough about how I react to dictate the instructions on the packets - try A if that does not work add B.

These things are genetic - how the drugs work in your system depend greatly on how your body metabolises them. How easily you develop an addiction is also genetic, some people become addicted far quicker than others. Also your body will adapt to opiates being present, if they stop working well you might need a detox - a week without them to reset your body's rate of metabolising them. This also reminds you of how severe the pain is and allows you to check if the pain is easing.

Personally I do not think there are any truly dangerous regulated drugs - only ones that are miss-used and abused. You will see fentanyl is dangerous and is killing heroin addicts. Used properly this is a very very powerful painkiller and an anaesthtic, NB anaesthetics stop you breathing properly - which is why they put tubes down your throat when they are used - which is how it kills addicts.

I would advise seeing a pain consultant - they see people every day with pain and know when it's being faked. They know what you can have/try and are willing to give you different delivery methods (I reacted to the glue on patches, but as a delivery system they are so much better than pills). And a GP cannot contradict a consultant without a valid medical reason - cost is not a medical reason.

Good luck

[Marnz in reply to M3rry]

Awesome information m3rry I also don’t have the propensity to abuse them nor have I needed to rely nor add more for the same effect as monthly I usually do a few weeks or weeks detox I’m in Australia so the opinion on opiates here is truly ruthless and narrowed to “everyone who takes them has an issue type mindset” I’ve never taken anything stronger then 30mg of Codeine with 500mg paracetamol which is panadiene forte here.

[Hidden in reply to Marnz]

Sigh.........Im going to share with you advise/counsel VERY relavant to that question how one (maybe you) might think and end up.

I'm a retired drug addict. I am 14 years clean but still have the mind of a person who has thoughts and feelings about injesting things into your body that is something all humans do no matter if it Australia, UK, USA, anywhere.

I used to smoke pot (marijuana) and led into crystal meth. Ive gone jail and drug rehab for these things and have seen what people say/think/feel before and after of the things that go on in their life.

The deal here is you are coming on here for counsel/advise for an ailment we all have. And the feeling is often hope and "I dont want this anymore." When we are if pain, sadness, despair; people want to feel different and injesting a pill or smoking or taking in something is one solution to an emotional/spiritual/physical problem.

What happens is you begin to take something that is considered a miracle pill or powder. For me Klonopin or clonazepam is it. But its a narcotic. It slows down my system, and my tics go away and my brain has a niiice smoooth feel. I can sleep well my coordination comes to place and as of now I can't walk anymore. I need a chair. So the real solution would be to take it to rid my problems. My body will end needing more and stronger. My thoughts will change and now Ive adapted to living life with it.

As time goes by my thoughts and feelings will go from just to feel good and normal to I NEED it. But in fact you don't need it. You need to learn how to live life on life's terms.

I've "bare knuckled" things and i've done things to live easier. We especially me want an easier time dealing with the condition. The solution may think "just take the pill" and right now its "just get a wheelchair." But theres more to just those words. Like a quick fix an easy route. But see now I feel crippled in my mind that I can't do things without a wheelchair, but that isn't true. I use an office chair and other things. It royaly sucks. But Im letting go letting God. Im letting the experience tell me what to do.

So what we have in the US is called a pain psychologist. Bless me for having a brother in-law with chronic pain. I have pain when I walk and randomly. I get you. But knowing that taking in something that can has the body needing it just to feel normal is where the Down Spiral occurs. Heroin. You smoke inject and sniff it and you feel amazing. A week later you're sick. Cough sneezing, sniffing, pooping. Its withdrawl. So you go through that and understand thats the process from beginning and end. Is it worth the first feeling? NO so you stop never to touch. OMG the pain is unbearable, just a pill will help. You feel great. Ok cool, OMG im sick oh well just taking it REALLY helped me. Then now you've learned a new outlet.

Ok now that turns out to be your "go to" The more you take the more it happens. Later you see your self differently and ask how did I ever get here? I never was like that! Well it all started not when you picked it up first. It all started when you felt that your curiosity could get you to that rainbow in the sky.

In a real nice way of putting learn and feel that emotional pain is not to hurt you its the struggle that produces emotional wealth later. You have real physical pain Its very real. Its real that I can't walk and have speech problems. But the ties also I have spiritual pain and emotional pain. So the one to heal faster and easier is the physical part then the spiritual and emotional.

If you are taking pain medicine, and it not work AT ALL then chance is it work is CRAP move to a different medicine. Thats what im sure you're doing. But I believe Australia is a modern country so believe the doctor and search for something that works.....Please don't venture out on your own when it comes to doing that....It's called self medicating. If I was a drug dealer or someone not knowing (caring) what you feel i'd suggest some black tar (heroin). OPIATES is your question but that is the way INTO a dreadful life that only results in more pain and suffering that dominoes and leads to death instituitions, and jail.

I said just a little bit I do it for fun. 2 1/2 years later I was a full blown drug addict. I said I'll steal for it. Did it. I said Ill never be as bad as that guy. Did it. I can stop on my own. Nope! Needed to be arrest go to jail about 9 times and be on parole. On top later may be the cause to my condition.

Think about that question real deep, do you actually need it or can you life on lifes terms and use something prescribed as tool to help you see the beauty in th S#$# life you have and smile to the sky for another day to live?

[Marnz in reply to Hidden]

That was an extremely thoughtful tip you bravely shared! But I never touch anything not prescribed drugs/medicine. When my pain is unliveable as I have epilepsy,SIADH,fibromyalgia,ulcers,bruxism, bursitis,osteoporosis arthritis ,FND and psychologically generalised anxiety disorder, I really only take the weakest of all opiates probably equivalent to cough syrup generally at 2-3am when my pain is so severe it wakes me in sweats and I have to throw up from agony. So when I way up quality of life I do take the medicine however I don’t “need need it”.

[Hidden in reply to Marnz]

As long as that frame of mind is there then thats what makes it a healthy choice I believe. You know you, I don't. My wife and others I know don't have that mindset of how I injest things so this is where you take the wheel.

[Keepstrong in reply to Marnz]

Hi Marnz. Wow you really are going through it.

There is a few things you can try to help ease your pain that your doctor and your pharmacy can suggest such as neurophen with paracetamol for one week. There is opiate in the neurophen, but only a trace an this is why they will only give you one box for a week then you take paracetamol the following week on its own. An if being active an doing gently exercise an using the shower exercise and gland drainage dose not ease your pain then the doctors may prescribe the same treatment as the week before but the following week they may have to review or refair you to a pain management team.

The only reason some people are against the opiates especially strong ones is because the sever damage they cause the digestive an liver systems an your lymphatic system. Also because the slight not definitive possibility of becoming addicted to them.

Please feel free to message me here privately any time of you want to chat okay?. I wish you a wonderful week ahead dear friend ' sending you soft healing hugs with comfort and light Ce., 😇🤗😇🙏

[M3rry in reply to Hidden]

Hugs

I never want to step in your shoes for that journey - and I understand part of your problem with Clonazepam - that was my closest brush with addiction.

Clonazepam is scary, even as someone who didn't become dependent the withdrawal symptoms form that were nasty (it is a drug that can trigger a physiological and a psychological addiction).

Ten years of prescribed Clonazepam and I realised they were not paying any attention. I asked for help to come off and was told by a GP to go cold turkey. I had already researched it and am so glad I knew he was talking out of his arse (sorry for the language).

With only the physiological addiction it still took a lot of effort and over 18 months to get clear. But I am a stubborn cow and I wasn't going to let 3 Pills a day control me. I am also lucky I only got a partial addiction.

[Hidden in reply to M3rry]

Lol you said arse. Americans say ass, thats no biggy, I'd definitely say once that kind of roll starts it's revolving and you end up crashing somehow I am glad you saw the difference some people do, but don't fully digest because theyre too high to notice. In quote to people in drug addiction "my worst day sober is better than my best day high." Meaning that through all the crud you go through you can make clear choices you have strength and all that good stuff that you don't have being high on a drug. The drug even pharmicutical can really blind you. But hey that stuff is FUN no lie. Thats why people come back to it like I did countless times. But lets be real that Fun is short lived and life of pain is set sail from there.

[Keepstrong in reply to Hidden]

Wow Matthew, that's very deep and so very true. Sharing your life experience and advice takes so much strength and so much confidence and I'm sending you a very very big soft hug 🤗🤗🤗🤗🤗

You are amazing and congratulations for staying on this journey your on all these years even with especially your diagnosis. It's not a nice condition and it's just brilliant the positive mindset and approach you have towards it well done.

I totally agree with you that it is up to the individual but they should not go it alone as to what they take for their pain a'd they should be very mindful as to how it makes them feel, during takin the medacation with opiates in them a'd what it's doing to their bodies just for the sake of a few hours being dazed, high or feeling stadated for a few hours at a price of going through such harsh side effects when it's leaving and has left the body.

As a past drug Councillor, I have witnessed so many people of all walks of life who became so addicted to opiate medacation and it was not from jenitic's they became that way. I have seen how Easy it was for people to go from popping solphadine an neurophen over the counter pain killers to gulping down strong cough bottles if they could not get a fix from the opiates medacation. It's so dangerous that much to come addicted to them here in Ireland, that when you go into a pharmacy to purchase neurophen or solphadine that the pharmacist actually comes out and asks have you tried something else and tells you that you can't take them for more than 4 days by law.

Also if you try to even buy my type of pain killer I use paracetamol from a store or pharmacy, you can only buy one box your not allowed buy 2. Even if you say okay I'll pay separately because one box may not be for you, they still tell you nope. One box only.

But look its different strokes for different folks an to be honest this is not the first time I have had someone not happy with my not only professional advice, but also from the advice I would of revived from fellow co workers of consultants, doctors, physio therapist and occupational therapist as well as neuroligest.

But Its okay, once my support and tips are of help to people like they have been apart from One Person.

Then I'm happy.

Matthew you are a inspiration to so many on how to turn their life around and also how not to go down the road you have done, would you consider maybe opening your own support group here maybe for guys or guys an galls who have your diagnoses and who may be struggling with medacation addiction?

I feel you would be brilliant at it.

Thanks so much Matthew for your awesome comment and advice here and also support.

Sending you soft healing hugs with comfort and light dear friend. Be well and keep strong, Ce 🙏😇🤗

[Hidden in reply to Keepstrong]

Thats an awesome question. To tell and share. For some reason my siblings all have a talent of being good at we do. For me I have had so many skeletons in the closet and so many stuggles that I can do whatever I want such as writting a book or do what you suggested.

Here's the deal.....My opinion and philosophy. I have so many things to offer but not many even care to take what I have to offer. I used to be upset about that. But as time went on I just learned it's just best to let my actions and what I do/say/know just be a role model to it, let them see and ask/comment on it. I was told I was a strong guy just by walking with gait and leg problems for 8 hours a day when the pressure of life to pay bills and live independently was enough to have me walk for 8 hours. (Im a mechanic even if im in a wheelchair) Im not strong im not some super hero. Im simple man smiling. no need to go tell it on the mountain. lol

Ireland huh, i'm part irish. What I like from ireland currently is the folk music and stuff LOVE IT. I have a group called The Sidh and this group called the Rumjacks. Also the Paddy Hats and Oreilys....Yummy music...This american digs it

[Keepstrong in reply to Hidden]

🤣😂🤣 Well Matthew, u can't go wrong with that taste in music 😂😂😂 I get what you mean an know how hard it be to get someone to through u life line because of your past back ground not been able to be left in the past. But have u ever thought of maybe being part of a the likes of an N. A Or a group for families of usures an maybe be a support worker or a sponsor?.

Just food for thought, I just really wish people like you who are such an inspiration to so manys talent is wasted.

I'm glad your doing work you enjoy that's great news. I wish you all the best in your life's journey and wish you health and well-being Matthew, be well and keep strong 😊💪😇😇😇😇🙏🙏🤗🤗

[Keepstrong in reply to M3rry]

Hi Mary.

I have read your views and opinions on opiates.

As to your list of questions, I'll simply answer all of them by informing you that I have been a drug Councillor for over 25 years and your opinion that drug abuse is genitic is only parsley right.

If a drug addict conceived while they where using narcotics, then it becomes jenitic.

Also no the hard drugs you have mentioned that's used where you are is definitely not legal over here.

And Mary if someone dose not want to use opiates, don't assume they must have a addiction, because that's very incorrect.

I myself have never been a drug addict nor have I ever been addicted to any for of medication especially with opiates in them.

Pain relief that has opiates in them not only can make you very addicted to them, but also there main purpose is to stadate the person so much that they actually don't be in their senses enough to feel their pain. Any consultant any Doctor an any health professional as well as drug councilors will inform you of that. If a person is in so much severe pain an is able to work with their medical professional who prescribed the medication be it tablets or pain patches so they don't get addicted then brilliant they should go for it.

Other wise if they can't then they should stay clear of them.

It's difficult strokes for different folks dear Mary. I'm glad what works for you and your husband is keeping you happy. And yes as our dear friend here comment says we are all here to support each other in this wonderful caring environment to help each other the best way we can without harshness or getting into debates as to what country is better than the other for rules on medacation. I stand by my original post that I have posted here that you have put your oppions on and I hope you enjoy your new week. Blessings. 🙏

[tabey]

Hi marnz

Hope your well i got fnd and suffer acute pain and im on alot of pain relief which includes

Mst and oramorpth but i never abuse the oramorpht and i think im lucky to of built up trust with my doctor and he is happy to give me these pain killers but it took a while for me to get them i admit

I just wish doctors would wake up and see people with FND suffer from chronic pain and delve deeper to why this is

Its just really nice to know your not alone

Take care

Tabe

[Nikismom]

Please research kratom. It's an herbal opiate substitute. Youtube has many testimonials

[M3rry]

Being in Australia makes things difficult - I don't know (personally) of any country with stricter drug controls. Last time we visited I didn't bother getting an import licence and just left me strong stuff at home - honestly it was easier getting import licences to Singapore and they still have a death penalty for illegal imports - even for prescribes meds! And Australia is the only country I have visited who actually x-ray suitcases etc on the way in.

Please fight to see a pain specialist - not only will they know what is actually available there but they will be able to force the GPs/pharmacists to let you have it.

With luck you will get one who is willing to trial each drug to make sure it is working and at the right dose. I am willing to guess you (like many of us) have brain fog - if so keep a symptom diary of you pain and when you take the meds - it will help you find the patterns to which drug/dose does what.

Good Luck