Pain management for chronic conditions

[mellie]

Ok, so for the past several years a few of you know that I've been struggling with severe pain. Rhumatoid Arthritis
Stage 3-4 ( which rapidly progressed during covid due to lack of getting diagnosed +essential medicine ) and a severe spinal canal stenosis with nerve abruptment at L4 & L5
Unbelievably, I also have regular osteoarthritis in my thoracic and cervical spine . ( likely due to gymnastics) I had a few serious injuries and was simply given bed rest, no MRIs lol back then but resulted in a few bulging disks also that I didn't even know I had until final trimester of last pregnancy. Useless Melbourne GP should have investigated all of this more thoroughly, but he did give me steroidal injections in my joints for relief, which worked until 2019 when the rhumatoid began attacking all my joints, even my spine and jaw TM joints.

Anyway, it seems that the medication specialist & pain specialist has prescribed the winning medication, Tapentadol, which is a relatively new medication, a more improved ( less side effects) medication than its older cousin Tramadol.

So for my RA the following is now what I'm taking....



Finally I have slept a full night without waking several times throughout the night in very severe pain resulting in sweats and even fever from RA.


ADALIMUMAB PRE-FILLED PEN 40MG/0.8ML (fortnightly)

Biological drug used to suppress my immune system attacking myself, joints, organs all that jazz.

METHOTREXATE INJECTION 20MG/0.40ML, ( weekly)
To further suppress my immune system, anti-inflamnatory.

On top of this, as multiple joint destruction is evident I've now as of last Friday been taking ......

TAPENTADOL TABLET 100MG SR ( slow release X 2 daily)

TAPENTADOL TABLET 50MG IR ( instant release up to 2x daily as necessary for breakthrough pain) ( mornings are horrible )

But guess what guys.........*drum rolls *


Finally found this magic combination that's given me control of my own life back, the pain no longer owns me, and now I can begin imagining the possibility of getting back to who I was, even if my joints sound like a bowl of rice bubbles creaking and cracking when I move

Now on top of this, the pain specialist has offered me something relatively new, it's called "Nerve Ablation" whereby I have the nerves burnt to stop them hurting.

I am rather excited about this, he said he will do my spine, neck and shoulders. ( will ask about elbow and both knees too)

Best of all, this super expensive procedure is to be bulk- billed and he's advised he won't even charge me a gap fee, and will do this procedure in a public hospital. I'll get a private room, he wants me to have a general anaesthetic ( for the spine) and IV sedation for shoulders & neck.

Now, I am wondering if any of you here have had this procedure, or know of someone who has.

I want to know what others experiences of this procedure are , and also what the limitations of the new medication I've been placed on, ( tapentadol) ...

I consider myself to be brave, I've had some horrible medical experiences over the years, but wonder about this.

Also, I am sharing this because I am not the only one here struggling with severe and disabling pain.

My goal is to no longer require pain management, or at least reduce it greatly with the nerve ablation procedures.

It's complex, because I have multiple areas that require ablation aka nerve burning lol - sounds I know but hey if it works then how good is this.

[mellie]

So I guess it can be said.... that my new specialist really gets on my nerves?


Fortunately he's very good looking ☺

For those of you interested in killing pain permanently, or at least reducing your pain medication substantially- you need to find a private pain clinic with a specialist who is experienced in nerve ablation therapy, because not many offer it, and ask if you can have this procedure bulk-billed in either a public or private hospital.
Depending on your situation, severity of pain, they can choose to bulk-bill this procedure if they wish.

Take your documentation and MRIs scans, reports etc with you of course.

Because pain shouldn't be forever.

Perhaps a grumpy Monkey from Ozpolitic could delve into something like this themselves?

[mellie]

I don't feel sorry for myself because I have all this going on, who I feel sorry for is a little girl in the grade below my own daughter at school, who developed rheumatoid arthritis when she was just seven years old.

Horrible, but she gets on with it, but she has a lot of time off school, and can't even play sports.

So...


I really can't complain, and on my darkest days, I think about all those kiddos out there, and that normally snaps me out of it.

Note - RA is a lifelong autoimmune disease, not your typical arthritis and the onset has begun in children as young as toddlers.

Not an old person's disease, it's usually a younger person's disease and it doesn't only attack joints.

The new medication is much much better, but as we speak my knees are aching, just a little, and shoulders too, but it's doable, I can still function and this is a massive difference had you seen me on the weekend whereby it was so horrible following Anzac service, I wasn't able to get out of bed.

So bad, that I held my urine for several hours because the pain was not worth it.

I didn't want to be seen sitting down watching the service, in case people thought I was either lazy or disrespectful.

Also, I wouldn't have been able to see Miss M lay her schools wreath or take photos so......

Anyway, lesson learned, I won't be so proud next year, will take fold- up chair, not that it looks like I'll be needing one, nerve ablation procedures going well.

[mellie]

After what followed the Friday Anzac ceremony, Saturday and Sunday, I couldn't care less what people think of me sitting down next year.

Pride before falleth! literally!

[tllwd]

Life Lived in Pain due to Chronic Illness

[mellie]

That's beautifully written, thanks for sharing Tld, this is so true.

[tllwd]

Global epidemiology of rheumatoid arthritis

raworld.png

[mellie]

Very interesting Tld.

We are definitely doing something wrong, or is genetics alone our achilles heel?

Meds are working well , pain wise, however I'm still inflamed.
Also, there's the problem of headaches, random severe headaches at 3am in the morning which I suspect is something that will ease-off as I become used to the pain drugs.

Hence I've emailed specialist this morning to see if we can bring nerve ablation forward, the sooner we destroy the nerves responsible for feeding pain signals back to the brain the better, and I'll be able to function properly without pain meds altogether.

Well, this is the plan anyway, and I think having some sort of plan is essential for anyone suffering chronic severe pain.

My right elbows especially giving me grief this morning, however I suspect this is because I have been using it more now that I have pain management on deck.

So I need to remain mindful about this, and remember that just because the joints aren't hurting as much, I still need to be careful.

[mellie]

If this nerve ablation works, this will be a real game-changer for me, and others like me who experience chronic pain for whatever reason. Even sports injuries.

The only thing I can think of that may pose as a problem is the nerves being unable to tell the brain there's a worsening or different injury altogether in the same area.

It's a price I'm prepared to pay, because I don't want my liver turning into pate, I'm already on some heavy and toxic medications to suppress my immune system as it is.

So any form of non- drug relief will be worth it to me.

[mellie]

The good news about this new generation pain medication (tapentadol) is that it doesn't impare me in any way, mental alertness, driving etc, and the headaches are manageable with ibuprofen.

Not everyone gets headaches from it though.

Also, less likely to develop physical dependence because of the manner in which this drug only partially binds to the opioid receptors in our brains.
Older opioid medications like morphine, codeine, oxycodone etc completely bind to our opioid receptors, hence so many people develop addiction and tolerance to pain killers and can't stop taking them without a tapered withdrawal plan.

This is where tapentadol is different.

Furthermore, less chances of it being abused or misused recreationally, because it doesn't provide the "high" or "sedation " junkies desire, even if they took a massive dose, the best they'll get is nausea, gastrointestinal symptoms and a severe headache.

So this is good too.

For me personally, even though an older trusted and pharmacokinetically cleaner opioid drug like morphine may work more effectively, pain wise, I wouldn't be able to drive my child to and from school or drive several hours to get her to eisteddfods.

So I am very pleased with it working, even if it's not as efficient as the more traditional ( albeit addictive) pain medications out there.

Also, it costs me $100 per month for the privilege of having a new generation pain medication because our Labor government refuses to put Tapentadol IR on the PBS .

But they allow junkies favourite's and seriously addictive painkillers to be on our PBS.

Go figure

Seems our government prefers addictive painkillers to non addictive painkillers.