Long term pain management options

I am now at a crossroads in my life. Still fairly young, I have a nasty little disease that has always been on the back of my mind since the day I found out I have it (2008).

I was lucky. I suffer from a disease that is almost always discovered after the fact, mine was found because I had broken my right leg and they did an MRI to make sure that was all that was damaged.

Turns out, I am one of the unfortunate people to develop Avascular Necrosis (AVN) of the hip. I have it bi-laterally, meaning both hips are affected. I went to see my orthopedic doctor who asked me if I was having any pain. At that time, I didn't think I did because I didn't know what the symptoms of AVN were. He told me that he didn't treat people without pain and to come back once it started bothering me.

That was the totally wrong answer in my opinion and set out to learn all I could about Avascular Necrosis. I am lucky in some respects, some people get AVN in their shoulders, hips, knees and ankles... it's a nasty little disease.

I found out that the bestest Doctor in the whole world was Dr. Mont in Baltimore who specialized in treatment of the disease with the focus on delaying hip replacements as long as possible. AVN is treatable to a certain extent prior to bone collapse...the actual bone collapse itself can be slowed down and in some rare cases stopped.

To make a long story shorter.... I under went a procedure in 2008 called core decompression on both hips.... basically meaning they drilled holes through the ball of each hip joint to decrease pressure and stimulate growth of the new blood vessels.

Now it is 2015.... I am in pain basically 24/7/365... and I do not know where to turn next. My current ortho surgeon took some x-rays last month and told me that he replaces hips that look better than mine all the time. Come back when I am ready.


Problem is...I am not ready. I am only 57 and a double hip transplant can only lead to more disability earlier. I am still mobile. I get up and go. I bowl on leagues twice a week to stay active.

But I hurt.... every day it seems to get worse and worse... I can't sit for any period of time.... I can't stand for any period of time,, I can't lay down for any period of time...... anything over 10-15 minutes in the same position results in increasing pain until I have to move or reposition to start the process all over.

I am now looking at going on pain medication, possibly for years. I have so many questions, I really don't know where to start....any body been on long term pain management? Patches...Injections...Pill..... they all scare me to some degree... I have an addictive type personality and the thought of being on long term pain pills is a scary thought me.

I have been on serious pain meds in the past but nothing that lasted more than a month or so...

Anybody have any advice for someone just beginning this journey?

a reply to: RickinVa

Marijuana.

Think about it, much better than most pharmaceuticals in my opinion.

Do the surgery now before you become older. You are old enough to know that the older you get the longer it takes to heal and in some instances, healing correctly is almost impossible.

There are a ton of folks who have hips replaced every day. Some of them come out wonky, that's always a risk with anything though.

I understand your reluctance. I would be reluctant as well, but you need to do this while you can still recuperate fairly quickly. It might take some time to get back 100% of course, but that time will be far shorter now than it will be in even 5 years. Do you want to spend the next 5 years in agony living only to then have the surgery and not heal, and live out your days in even more agony.... Possibly Bedridden?

Those are serious questions that are a reality in your situation. I've seen it happen frequently in the last few years to those close to me.

In the end it is your decision of course. But every bit you wait, the more your body ages, the longer it takes for you to bounce back from major surgery.

ETA - I kind of sound like I am making fun of your age, or pointing it out too much. That wasn't my intent at all. I'm getting up there myself and suffer from a degenerating sacroiliac joint. Pain that is relentless is a hard thing to deal with. I hope you can find some relief soon.

a reply to: RickinVa

Ths is my opinion:

As Kangaruex pointed out the older you get the harder it is for you to heal and with the amount of pain you are in the surgery sounds like the best option.

If cortisone shots can't alleviate your pain I urge you not to take the narcotic route.

Narcotics will mask your pain you may even enjoy them, but they will certainly rob you of your life before you know it.
I have been through it and I do not have an addictive personality, yet I still wound up addicted. Kicking the habit was one of the worst experiences of my like and realizing as my head cleared all the time I had wasted as well as the things I missed was worse.

It seems like you are considering pain meds to give you back a quality of life, but it will wind up taking that away from you.

Yes!

What you are rarely told is that most pain meds only take away about 20% of the pain. You still have to deal with the other 80%.

I am on Morphine and I use them as infrequently as I can get away with. They and most other pain meds are hellishly addictive and the more you use, the more you have to use. Almost all of these type of meds are destructive to your organs, most usually the liver.

The answer above, Marijuana is one option, but that too is a double edged sword. Use too much of it and it can lead to all sorts of other problems.

Try taking paracetamol and iburofen together and see how that goes.

One of the tricks I use is to only stay on any meds for two days and then switch to something else in a sequence. This will give your body time to rest and can let your liver recover.

Research continues and studies are finding that a group of drugs routinely used for acute epilepsy can work wonders but you need to find one that works for you.

These are, Pregablin, Na valporate, Carbamazepure and Gabapenhn. These do a lot less damage to your liver but you need to try to see which one is best for you.

Low doses (10mg) of Endep can help you sleep at night and is a damn site better than sleeping tablets in many cases..

As always, see your doctor. But I will also say that not many doctors actually keep up with ground breaking research in this field so it is up to you to show them the research. It should not be like this but the real world is crappy.

What I have given you are ideas only for you to do your own research. It does not replace a doctors advice. It does however get lousy doctors to do the bloody research.

Lastly, Kanga is right. I agree completely with what she has written. Scary thought I know!

P

Sorry to hear about your painful situation RickinVA. I have this too, bilaterally. But mine just shows on my MRI, and is so far asymptomatic. But I do have a spinal cord injury that is exceptionally painful. I suggest you stay away from long term opioid medications. They will work for a few years, but eventually the body/brain develops a tolerance and they stop doing any good, but instead, potential harm , as they are addicting. Also, when taking them, say goodbye to your sex life, as they destroy libido. I would say also to stay away from pregabalin and similar anti-seizure meds which are often prescribed off-label for pain. They may help a little, but will lower your IQ by 1/2.

What I have found helpful is thru meditation, to disassociate myself from the pain, and never let my condition define me. Hypnosis is also very helpful, if you can find a therapist with experience with pain management strategies I would suggest doing it. Your subconscious mind can even repair damage when directed properly.

Acupuncture is also an option. I tried it twice, but not long enough to really realize any benefit. It can get expensive, and my insurance doesn't currently cover it.

I once had a doctor that wanted to implant an intrathecal pain pump, where a device is surgically implanted which pumps pain medicine directly into the spinal fluid. Thanks but no thanks, I couldn't live with that.

Your own mind can be your most powerful ally, or your roadblock. Use it's incredible power to help you deal with this. I know it isn't that easy, especially with constant pain as a distraction. But you can use it to put things like pain in their place - away from your constant focus.

I hope these suggestions are helpful.

Move to Colorado.

They have excellent doctors, the same standard medicine available, clean air.

And yes you can smoke a little herbal help without the inappropriate stigma or embarrassment of playing the medicinal game.

I dont smoke, or vape or eat pot. But I am progressively smart enough to recognise there is value to those with pain needs.

a reply to: RickinVa

A truly difficult decision.

I know people, not with your ailment, that have put of replacements for years for whatever reasons. Once they did have them, they felt foolish for waiting so long.

Yes you are young for replacement surgery however, you must consider quality of life. Medication of any kind will degrade that quality and perhaps set you up for worse complications.

Can replacements be replaced? I do know that they last longer now. If so, I would think some pain and trama in the short term would be worth long term benefit.

Blessings...

I had my right hip replaced 2 years ago at 50, after 10 years of pain. It was the right decision for me as I wanted to be able to work, go for walks and get on with my life. Pain relief was in the form of strong Co-codemol 4 times a day year in year out. I haven't been afected by the meds in any way. I would advise you to get your hip replaced, do the recovery and enjoy your new found pain free freedom.

not sure what your stand is on this, but as im sure many have mentioned, marijuana will help you. be it in oil, edible form or inhalation. The guy I get my weed from has had both his hips replaced due to some problems, and its literally the only thing that helps him. Not a lifetime of medication, bringing about more side effects than it can cure (or should i say ease, not cure) forget the propaganda that comes with weed and just try it, it will do you a world of good i assure you, particularly on the pain relief side. a reply to: RickinVa

What ever long term pain medication works for you, dependency is going to be an ongoing issue. Try to look for options that are going to be sustainable.

a reply to: RickinVa

Go to earthclinic

Just google it

And go to natural cures site, start researching

Start reading

People had success with apple cider vinegar 2 spoons a day with water, coconut oil

Even zymflamend, though its pricy

Long term pain pills will destroy you

Long term pain sufferer here, tried most things the docs usually suggest.

About 12 years ago I started taking the epileptic meds to ease my problems. I was on 8000mg per day (nope not 800) of Gabapentin. It did help some degree, but as someone else suggested - it's more in the realm of 25% taking the edge off. About 4 years back though I switched to a newer one called Lyrica, and can now manage most days on about 1200mg's. Probably about the same level of pain relief, but getting away with fewer tablets was a plus.

Also with these I'm taking slow release tramadol as well, then a varying amount of other tablets to control my bowels. Nightmarish.

A poster about said that the meds I'm on lower IQ by half. Kind of got me worried! I know it sounds stupid but I've never really wanted to look into side-effects of the meds I'm on. Basically my pain is so bad, if it works and I can function as a parent, then I will have it. Although, as I mention in another thread the other day I mix up my words - sound quite dumb. So maybe it is lowering my IQ. Certainly would explain a lot, I was once studying Engineering in University, but can't even properly do basic algebra anymore.

So...

Don't go the tablet path if you can avoid it, In a few more years my kids will both be adults, and hopefully I can do some trials with a MJ medication if it ever becomes legal down here, but I'm not really sold until I try it - I think some people just want it so badly they will say just about anything (although to be fair, it does seem highly promising).

Try surgery. However, I feel obliged to say that I was once talked into surgery which left me completely wheelchair bound, so no surgery is without risks, my surgeon who I thought was awesome and I really trusted basically turned into a very nastiest man probably because I made his insurance premiums go up. But if you have a chance to keep walking you should going for gold. I'd give anything to be able to have kicked a footy with my kids, or gone hiking, but I am mostly bound to flat concreted populated areas talking to peoples butts all day.

Be careful with the epileptic meds, I was on Neurontin for a year, and I started having chest pains, so over the course of a month I weaned off gradually, but I lost 25 lbs in the course of 2 months after that. I only weighed 120 lbs before and Im 5'4" , so I got down to 95 lbs. It took me over a year to gain 10 lbs back. Im still way too thin and I cant seem to gain any more.
They do help with nerve pain, but the side effects were not acceptable. I was on Norco 4x daily #10s, I went off them, but I do use them only for acute (Im going to die now) pain. They really dont make the pain stop, but they do help me cope with it better. I have severe neuropathies, which is nerve damage.
There are some topical creams, with stuff like arnica (Herb) in them, I have gotten good relief using them. I also make a cannabis tincture that is most helpful. Im not into the "high" so I make it without decarbing the weed first, so the THC isnt activated.

a reply to: RickinVa

Guten Morgen- I broke My back/neck in 2001 while fighting a pit bull at a meth lab while I was working. I was finally retired out in 2004. At the start of My "odyssey" I was on 7 Rx meds. that dealt with pain (x2) PTSD; high cholesterol; hypertension; 2 different cancers and I couldn't sleep. I was rx'ed Fentanyl™ and Norco™ and now 13 years later I'm on a smaller dose now than when I started. Usually the dosage will increase.

I'll also get this bit out of the way---- Nobody will give a bigger 'snip' about Your health than You. You'll have to be Your #1 advocate. You're also entering a world where You will be held responsible for those who "Doctor Shop" and head to the E.R. exhibiting "DSB" (drug seeking behavior) Once I found "Ayurveda" I haven't looked back.

My cholesterol went from 373 to 153. Blood pressure went from 145/110 on 2 meds to 100/70 on ZERO. The cancer on My skin has been "re-hydrated" and the cancer/scarring on the top of My lungs is also 'gone'...

The same energy that lights the sky from the sun (Sol) also burns in You. You can 'use' this energy to heal theySelf through meditation. This stems from the SOLar plexus.. I do Yoga to keep out of a "shopping cart" (wheel chair).

Before Ayurveda I was a mess and 275# because My muscle turned to FAT, now I'm at 200# and better shape now than when I went through the Police Academy and even when I played 2 years of Pro baseball..

namaste

••• Your Mileage May Vary •••

P.S. If You have any questions do not hesitate to ask via PM/U2U messaging.. It is ALL available on-line and anything I "push" is FREE!!

P.S.S. STAY HYDRATED My Friend...

Edit: I also just read the bit about "coconut oil"

I'm not going to go into my own issues, but I have actually found diet and good water to make the biggest difference. It's difficult because I am unable to personally cook much, but it has made more of a difference than anything else. It was also the last thing I have tried, as I didn't expect much.

Stay away from the patches, period. Also try not to take the pain meds on too consistent of a basis. That way, when the pain gets really bad you can get the most relief from them.

Be wary of mixing the green stuff with pain meds. For some, they can counteract each other depending on strain and med.

Get as many opinions on your condition as possible. I have found doctors aren't too concerned about much of anything.

Do not go through anything like a reclast treatment. Might be fine, might send you to the ER.

Thanks for the replies, I still haven't decided n the path to take further down the road.

The one thing everyone has left out, is financial considerations. I do have insurance, but my share of the bill for replacing both hips would not be a small amount of money... I am on fixed disability income and have no way of generating more income.

I already have several thousands of dollars worth of medical bills that I can't pay and I really do not want to add to that amount.


Kinda stuck between the proverbial rock and a hard place so to speak.

a reply to: RickinVa

Hi. Although I have not went through your exact disease and pain I can relate in some way. I have been on a similar journey and have made some bad decisions which I am trying to rectify. The big problem is medication and finding that balance.
I'm only 28 and developed crps around 4 years ago. All I can say over night I've been plunged into he'll. The situation developed in a way where I could not sleep and had the mind set that I would take and do anything to escape the pain even to a level to get a few hours rest. That started me on all sorts of medication such as full dosages of tramadol, morphine injections/patches, nerve and depressions med. It was a case of trial and error to what worked best. Four years on I have come to a point I want my life back. I'm a zombie, I get at best 3 hours sleep a night and have no quality of life. I tried to get my driving liscence but stopped after few lessons as I am too doped up. I have tried to go back to uni at the open uni but i can barely read with blurred vision. I can go on but it all doesn't matter.

The point is you need to get to a level with the medication that you can balance your daily life and the pain. Don't use the meds to escape life as I did because coming off the meds is very very hard.

I would have laughed at myself years back. But you defiantly should look at meditation. There are lots of different methods but I have found it has helped me a lot with the pain and the anxiety/depression and general self worthlessness.

I genuinely hope and wish you all the best on your journey. You need to have at least one thing you want to live for because when you lose that then the pain and life altering effect it has will lead you to a point when you look at death as a very attractive option. I'm very luck to have 2 beautiful kids and partner. Without them I would be in the spirit world.

If you ever need to talk just mail me.

Regards
Joe

a reply to: sussy

You take Cocodamol year in, year out? And it's all rosy?

I may have misinterpreted you, but by the sound of it you still take the stuff... for most folk the problems usually start once you stop taking these Opiates.

I get that it's good to be free from (at least some) pain, but i wouldn't be recommending to folk that Codeine or any other Opiate based drug is OK to take all the time. It's bloody irresponsible if you ask me.

a reply to: skalla

Well then you are completely wrong. Unlike the usa who have a paranoid fear of taking pain killers, myself in the UK have took co -codamol for years without any effects. I'm not addicted to them I have no need for them now as I am pain free.
All my liver functions are perfectly fine, kidneys too. Was seen by my doctor over the years who had no problems issuing them and had no problems with the hospital surgeon who did my hip and knew I had been on them for years.