Pain is killing me

[MournBlade]

I have a very bad back injury.
I just got a new MRI last saturday - my Dr almost gave me new pain meds when I saw him a month ago but decided to wait on the new MRI to give me new ones.
I have been on percocets for a very long time and they give me maybe a maximum of 30% pain relief on a good day, on a bad day 10% or less.
I have been having very bad days since we moved and can barely get out of bed, I can't sleep and life just sucks for the most part.
My Dr had me try dilaudid awhile back and it worked even less than the percocets.
I was on tylenol 3's 4's and oxycontin years ago as well.
What else is there?
The Dr is going to get me cortizone shots, they made the pain worse the last time I got some over 4 years ago.
But those guys just jabbed a needle in my back a few times almost randomly so who knows.
The Dr says these will be xray guided or something like that.
I think about suicide so much it doesn't even bother me anymore.
If it wasn't for my wife and son I would have offed myself already.
I will mention that to my Dr again as well and see what happens.
I think not feeling anything below the waist would be a blessing anymore - feels like my legs are on fire while someone hammers in electrocuted 9 inch nails.
I'm taking novo gabapentin for the sciatica and it helps sometimes.
Being depressed sucks but I won't take meds for it anymore.
The last time I was on some I had a gun in my mouth and was pulling the trigger, when my cat bumped into my leg and made me stop for no other reason than who would take care of the cats (I was single then).
Don't freak out or anything I'm kind of just venting here - but would like some medical professional advice on what might work after being injured and on meds for over 6 years.
Thanks

[Draper Mel]

Find another doctor. I don't know what kind you're seeing now, but I'd go see a neurologist or neurosurgeon. Also a pain management specialist who can tailor a medication regimen to suit your condition. Shooting you up with cortisone is just masking the problem at this point.

Also, take the meds for the depression. It doesn't mean you're weak, it means you have a chemical imbalance in your brain that needs to be corrected. Being less depressed will also help you withstand the pain better.

Just for the record, I'm not a doctor, just a depression and back problem veteran.

[MournBlade]

I don't currently have any depression meds prescribed nor do I need any.
I'm depressed because my wife is almost killing herself busting her ass to provide for the family and I can't do shit to help.
That and many other things make me feel worthless.
I am seeing a pain specialist right now - the cortizone shots are to tide me over untill I can hopefully get a few disks replaced.
I will refuse to get spinal fusion I have talked to many people who have had it and its bad.
It sometime helps in the short term but long term the disks near the fusion degrade at an accelerated rate and soon you have a rod where your spine was.
I was seeing a surgeon who wrote the book on spinal surgeries in a very prestigous hospital. My funds ran out after a discectomy that only lowered the pain level a few degrees.
I am seeing my Dr monday - I'll just have to keep it together till then.
Should have gone in sooner...

[ArcticChicken]

You should talk to Seshat. She has cronic pain problems, she may be able to give you some coping advice, and/or link you to resources.

[MournBlade]

Thanks - I will do that

[lilnizzie]

I just want to pass this along, so you can pass it to your doctor. I know your situation, I live it too, and I'm not giving out medical advice, but passing along something that works for my husband. I just consider this a situation that I feel compelled to comment on, and will risk getting in trouble to pass it along.


my husband is in pretty much the exact same situation as you. Same pain areas, same meds he's tried. He's actually getting relief now from something called the Fentanyl patch. It comes in 12, 25, 50, 75 and 100 mcg doses. He's currently at a low dose, and he says that it's working when nothing else ever has.

[MournBlade]

I have used those patches and they did help alot.
I had to stop using them due to cost issues - they were stupid expensive.
Now that I'm on my Wifes benefits I'll ask about them again.
Also when I went to see my Dr today it turns out someone told him I'm abusing my pain medication - WTF?
Since the percocets aren't doing shit anyways I decided to stop taking them completely and not get the prescription filled I got today.
My Dr didn't have time to talk about my MRI today I'll see whats up with that thursday.
I hope the asshole that did this to me gets a huge karmic kick in the balls for it - rotten asshole.

[FormerCallingCardRep]

MournBlade, my hubby has lived with chronic spinal pain for the last 24 years. Some of the non medical things we have done that has helped are hot showers with the water as hot as he can stand on his back, placing a towel on his back and heating it with a blow dryer then covering it to keep the heat in.

The latest medicine that his Dr is trying for the pain in addition to the Neurontin that you are already taking is Cymbalta. It has made the pain in his back more bearable.

His spinal pain is caused by benign tumors that are on his spinal cord. He has had three of them removed so far.

[DeltaSierra]

This is just a suggestion, but find out if a TENS unit would help you. I had a very bad back injury a couple years ago, and my back pain is almost gone thanks to the TENS. The best thing about it is that its not addictive, and you can wear it as long as you need to.

[Flying Grype]

The thing to remember about depression is that if you can't deal with your emotional problems and are depressed all the time for a real reason, it can LEAD to a chronic chemical imbalance where you end up depressed all the time even without a reason. The brain trains itself to get used to the level of chemicals. So even if there's a logical cause for the depression now, you should get help with it. I wouldn't go for meds at this point if you're not just "sad for no reason". Look into cognitive behavioural therapy, which is to help you deal with the logical-reason depression and keep it from becoming a chronic illness.

[Seshat]

You should talk to Seshat. She has cronic pain problems, she may be able to give you some coping advice, and/or link you to resources.

Okay. Here I am!

Note: we also have other chronic pain patients here, as well as medically trained people.

Firstly: You haven't hit the end of the chemical/drug options for pain treatment, not by a long shot. It sounds like you've so far just been given the opiate-like ones, which (pharmacists, please correct me if I have this wrong) act on the pain receptors themselves. They also act on various other receptors, so I'm oversimplifying opiates a lot; but never mind. For our purposes: the opiates act directly on the pain receptors.
Several other pain-relieving drugs are now available or are in development, including drugs which inhibit the pain sense from actually reaching the brain in the first place, drugs which modify how the brain interprets the pain signal, and drugs which reduce how fast and if the pain signal is passed from receptor to receptor.

I'm on an opiod (synthetic opiate), an anti-epileptic to reduce the transmission of pain from receptor to receptor, and a drug which interferes with how my brain interprets the pain signal (cymbalta). This mix is appropriate for my particular cause-of-pain (fibromyalgia), but you should discuss an appropriate drug mix for your pain cause with a pharmacist or a pain-specialist doctor. Or both.
In fact, I plan to discuss swapping out my synthetic opiod for 'Lyrica', one of the new breed of painkillers, with my pharmacist soon. Once I've checked with Angelo whether or not he thinks it's a good idea, I'll discuss it with my family doctor.
(Why the pharmacist before the doctor? Because pharmacists specialise in drugs; my doctor specialises in diagnosing and treating whatever problems come into her office. Angelo will know things about Lyrica that Ganga would have to look up.)



So much for the chemical side.


Next: Pain signals come in various types. They also follow the same channels as such signals as 'hot', 'cold', and 'pressure'.
Some signals are high priority, other signals are low priority. Low priority signals wait on high priority ones, and sometimes just don't get past at all - this is one of the ways heat packs and cold packs work to reduce pain.
This is also why rubbing an insect bite can temporarily ease the itch. Pressure is higher priority than itch.

Well, okay. High priority signals override some of the low priority signals - it depends on how many high signals there are vs how many low signals there are.

So. Heat packs, cold packs, massage, pressure bandages can all assist in pain management. I understand that TENS units operate in a similar manner, but over a longer period of time: however, I have not yet studied TENS units, so hopefully someone who has will chime in. Or you can ask a pharmacist.
Please note: your pharmacist also probably knows about pain signals and which non-chemical things such as heat, cold and pressure will help override the pain signal.

.... to be continued.

[Food Lady]

I'm so sorry you're going through this. My pain is probably 10% of yours, but it's bad to me at times. I don't really have any advice, except that I sympathize. I had nerve pain a few months ago, and opiates didn't really help. Nothing did. I had to suffer through and it was awful. I hope you can find something. Oh, and the confusion thing is true for me now, with my "regular" pain (that nerve has since become untrapped). I find hot/cold and some essential oils help me. I don't really understand how the oils do it, but they do. I sometimes use lavendar or peppermint. But your pain level may be beyond their powers.

[Seshat]

Teaching your brain to reinterpret pain signals.

How your emotions react and respond to pain is based on how you think about pain. As an example, whenever I feel a 'new' pain, I examine the affected body part and check. If it's a fibro pain, I just shrug and interpret it as another case of my body sending false data; and my cortex files it under 'fibro pain' and 'nothing to worry about' and I don't get much extra stress for it.
If, however, I see blood streaming from my leg - well, that's a totally different matter!

In your case, you might want to learn to think 'okay, that's my back flaring up again, nothing to worry about'. Or 'ack! Blood streaming from my leg! Where's the first aid kit?'

A flare-up will usually have me going for the heat packs, cold packs and massage; a bad flare-up will also have me reaching for my breakthrough pain meds. But it's not something to worry about; it's something to stay calm about.

Analogy:
I imagine myself to be in the control centre of a large and complex machine, with some faulty signal wiring. Unfortunately, I'm unable to fix the wiring - but I am able to 'send messengers off to check on faulty signals' (ie, do a visual or tactile exam of the affected area), and if the signal is definitely faulty, I can just choose to 'know it's faulty' and ignore it.
It's still an annoying blinking light and buzzing noise that makes it hard for me to concentrate on everything else I need to do in this control centre; but I know it's a meaningless light and noise.

To quote Shakespeare: "it is a tale told by an idiot, full of sound and fury, signifying nothing."



One good technique for learning how to think 'helpfully' is Cognitive Behavioural Therapy. MoodGym is a free CBT course provided by the Australian National University; intended primarily for distance healthcare to remote areas of Australia; but free to anyone in the world.

Another is called "Helpful Thinking": I don't know offhand about good resources for that; perhaps someone else can chime in. The main concept, however, is to assess your thoughts and determine whether the thought is a helpful or unhelpful way of interpreting the situation.

For example:
"I can't do anything but lie here" vs "I have plenty of time to listen to my children and really get to understand who they are and help them learn to be better people."

Does that help you understand helpful thinking?



My arms are starting to hurt too much for me to keep typing, but in the next session of typing I need to explain these:

* the pain/atrophy/pain cycle.

* how chronic pain affects the most primitive parts of the brain, and how it affects the emotion neurochemicals.

* anything else I think of between now and then.


Last for the moment.....

I have made a pact with my family.

I know that my own thoughts and emotions and interpretations can be faulty, especially when I'm depressed. However, I trust my husband, my best friend, my family doctor, and my mental health nurse to have better judgement than me in this matter.

While there are realistic and feasible ways to improve my quality of life, I have promised to stick around. If my quality of life ever comes to a point where I am close to the 'neurotypical', I will stick around.

My husband and my best friend, however, have promised that if we run out of possibilities while my quality of life is unliveable, they will understand if I self-euthanise. For legal reasons, and because I love them and don't want them in prison, they can't help me. I won't let them. But they'll not interfere.


However, we have passed the point of unliveable. With the medical assistance I have, in my case I can tolerate the bad days, weeks and (especially in winter), months. And the good days are either neutral or good; and I'm able to do some good in the world. So the second part of the pact is not likely to be needed, unless something happens to me.

But the pact was made while my life WAS intolerable, so it was valid, and it was a hard choice for them to make.


I don't know if such a pact will help you - but it truly, truly helped me. Knowing that I'd have their support to find as much medical help as possible to make my life tolerable, or even good - and knowing that I'd have their support if we ran out of options.

It meant that during the really depressive times, I could ask one of them 'have we run out of options yet?', and they'd list off the options we were still trying, or hadn't started yet, and I'd clutch their hand and cry and nod and ... endure that hour, that minute, that next second. Waiting for the down time to end, for the cycle to move up again.

Because for me, that's how the depression was. Cycles of down and up. Wait out the down periods; and use the up periods to use your upper body, your voice, your head, your mind, to improve the lives of those around you.

[Seshat]

My arms are starting to hurt too much for me to keep typing, but in the next session of typing I need to explain these:

* the pain/atrophy/pain cycle.

* how chronic pain affects the most primitive parts of the brain, and how it affects the emotion neurochemicals.

I haven't thought of anything else to add yet, so I'll just cover there.

The very base of your brain, where it connects to your spinal cord, is the most primitive part. It doesn't actually think, it reacts. It also controls some of the most primitive emotions, including (among others) the fight/flight/freeze reflex.
("freeze" is a way of trying to hide - rabbits are a classic example, especially the 'rabbit in the headlights' phenomenon.)

When it feels pain, this primitive part assumes injury or disease. So it wants to hide from predators (even in a predator, it wants to hide from other predators).

Best way to cause the organism to hide is to make it depressed and anxious - so it will want to find a quiet, safe place and stay there until the pain goes away.

If you have a week of the 'flu, that's no problem. But if your pain is chronic, the depression and anxiety can also become chronic.


Antidepressants exist which can counteract this effect. However, the first couple of weeks - or even months - on an antidepressant are the most dangerous for seriously depressed patients.
When you're down that deep, you're down too deep to actually make plans to go through with suicide. The antidepressant has to pull you through a period where you're still depressed, but are 'up' enough to actually make plans and go through with it.

The problem with using antidepressants is that we can't tell which one will be right for which patient: there's a filter in the blood system which means the blood in the brain cavity is different from the blood in the rest of the body; so we can't do blood tests on the 'blood in the brain' unless we carve a hole in the skull.
Which means that finding the appropriate antidepressant requires patience - something most anxious and depressed people are inherently short of.




Now the pain/atrophy/pain cycle.

If you do more with your muscles than they are currently capable of, they will hurt ... well, I have no words for how much it hurts. My pain-specialist physiotherapists called it a 'pain crash'.

This, quite naturally, makes you reluctant to use those muscles. The problem comes when it makes you reluctant to use them at all, rather than learning how to use them within their current limits.

If you don't use them to - or near - their current limits, the muscle atrophies. AKA, muscle cells die off from lack of use. Your body decides to use those resources elsewhere.

This lowers the limit of what the muscle is capable of.

So if you then try to work the muscle to its old limit, you might pain crash again.

And so the cycle spirals down.



The good news is that you can also spiral UP!

Start incredibly, impossibly slowly. If you're doing a bicep curl, for instance, do one with no weights and only halfway up - and do one of them.

Find a general whole-body workout routine, and minimise the whole routine in that way - half-bicep curls with no weights. Half-squats lying on a bed (so you aren't using your body weight as a weight), with a family member providing resistance by pushing lightly against your feet.
DON'T even think about doing push-ups or sit-ups, they demand too much of muscles in this sort of pain. Instead, think of other ways which use less weight, but use those muscles. Perhaps lie on a bed and simply twist your waist with someone supporting the shoulder you're lifting, to work the obliques.

Do this routine twice in the course of a week. If you find that it causes you to pain crash, cut back on it by about 20%.
If you can do it for two weeks and it doesn't cause a pain crash, add about 20% of effort into it.


This is one of the ways to reverse the pain spiral and work the way up. It's the only way I know of - there may be others, but you'd have to ask a pain-specialist physiotherapist.

[AccountingDrone]

Start incredibly, impossibly slowly. If you're doing a bicep curl, for instance, do one with no weights and only halfway up - and do one of them.
.

That is why I have half pound weights =)

Also I found exercising in a swimming pool helps support the body, the warm water eases aches and pains. I also do some limited exercises in my hot tub on really cranky body days.

Just the normal resistance of moving through water can be enough additional 'work' for the muscles.

Can't remember, are you able to pick a physio facility? Try and see if one has a pool based 1 hour session of guided exercises.