Tom Stormcrowe

OK, I'm not looking for "medical advice" here. I have drs for that. Those of you that have chronic pain, I'm interested in how you manage it.

My background: I have Lupus and cardiac problems involving a persistent arrhythmia. The heart problem has me in Club Cooumadin, so I can't take NSAID's for the arthritis associated with my Lupus. As a result, I'm taking narcotics in a prophylactic dosage for chronic pain, or I literally can't get around. On them, I can lead a pretty normal life, as long as I don't overdo it and trigger a fibrillation event.

How do you manage your pain? I may get an idea or two to discuss with my Drs.

crtreedude 

I would think if you stopped moderating P & R it would probably remove most of your pain... Sorry Tom, couldn't resist.

My wife has some pretty serious chronic pain, we deal with it with deep massage, it probably isn't a complete replacement, not suggesting that it is, but it is amazing how much better she feels after I have transferred her pain, to my hands....

DnvrFox

My wife (75yo) has severe, recurring daily post-herpetic-neuralgia (from Shingles) pain in her upper right quadrant for 8 years. This is a daily occurrence, sometime ending in crying and near screaming. We never do anything late afternoon or evenings.

We have seen and consulted with numerous MD's. We have talked with the very best pain specialists in the country. We have tried non-standard remedies and tests.

We found that her cortisol levels (stress hormones) were extremely high, her vitamin D extremely low, and she needed a different type of thyroid supplement. These have all or are being treated through non-standard medicine, and have gotten much better. We have been through the "learning to live with pain" bit, and she does meditation and calming things which help some.

Many of what we have tried did NOT come to us from a single medical source. We searched the world, and our neuro/pain specialist has - at our suggestion - incorporated some of these things.

Here are some suggestions

Nortryptiline (sp?) - of significant benefit. She could not take amitryptiline, as it caused heart arrythmia. However, the nortryptiline has been of great help with the pain. Prescribed with propanolol

Clonazepam - calming and an anti-pain drug

Morphine - she takes a dose at noon and another at 4pm. It interferes with her sleep, so she takes it early.

Exercise - swimming, walking, some bicycling

Stress reduction - we do everything possible to reduce stress in both of our lives. No phone calls after 8pm, staying out of neighborhood and other squabbles, dealing effectively with stress causing relatives. Stress is directly related to her pain level. DIRECTLY!

We sing together. It helps.

DID NOT WORK

Terrible experience with a so-called "pain clinic" at the university of Colorado Health Center, where they tried to inject steroids into her nerves. It did not help, she ended up in the hospital with a collapsed lung, the MD had the bedside manner of a - well, it won't print here.

Lidocaine patches did not work. Developed a rash.

We went through a whole menu of topical creams that were supposed to get drugs into her nerves through the skin. She developed allergies to most of them, and they did not really help.

Lyrica and Neurontin

Acupuncture

Current

Right now, with the mix above, she is likely in the best (least) pain in several years.

Also, can you take Celebrex? I take that because I am on an adult dose of aspirin daily, and cannot take NSAIDS either.

Please feel free to contact me by PM for any further info.

George

Tom, my wife and I have RA. She's on a infusion of Rituxan and doesn't take NSAID's at all. I on the other hand do take them. If the Rituxan doesn't do it, maybe some other infusion would work. Good luck, I know we have some pretty rough times around here with the pain.

DnvrFox

I get a periodic update on current pain topics and research:

www.Pain-Topics.org

enotifications@pain-topics.org

Banded Krait

Tom,

Hypnosis can be used for some types of pain control/management. I do not know if it can be used for chronic joint pain.

If you ever want to see something mind-boggling, watch the video at this link: https://www.abc.net.au/catalyst/stories/s1440855.htm (click on the video camera icon to play). There is a weekly TV magazine show called Catalyst on the Australian Broadcasting Company network. The link is to a story they did a number of years ago on hypnosis. Just ignore the first two minutes where they show a hypnosis stage show--these are what tend to give hypnosis a bad name. The rest of the story is well done and informative. One of the people they cover in this story is a woman named Beverly who is allergic to conventional anaesthetics. She needed to have surgery, and the video follows her as she undergoes training to use hypnosis for anaesthesia. During the last two minutes of the story (at about minute 25), you actually get to see her undergo surgery with hypnosis as the only form of anaesthesia. They film the surgeon making the incision in her abdomen while the patient is chatting away with the hypnotist who is seated beside the operating table.

DnvrFox

My wife strongly suggests a book "Pain Free 1-2-3" Teitlebaum - helped her a LOT with the psychological and social dimensions of pain.

Tom Stormcrowe

OK: Celebrex: Intreractions with my anti-arrhythmia meds preclude this medicationL it'll trigger a heart attack.

Right now, I'm taling Hydrocodone, and it's losing its efficacy. We're considering a Pregabalin compound, Lyrica, since it has an off label use for chronic pain and has no interaction potential with any of my heart meds or coumadin, It acts on the same mechanism as morphine by modifying the ability for the pain stimulus to cross the synaptic gap by reducint the action potential..essentially by reducing the line level voltage in the nerves and resulting in that it makes it so it takes a much stronger pain stimulus to cross the gap.

I tried hypnosis, and I apparently have too many trust issues. I can't be hypnotized because I cannot trust the hypnotherapist enough to be put under, no matter how much I want to,

Tom Stormcrowe

KICKING PEOPLES BUTTS IN p&r help me maintain my sanity. Besides, they're abut the only people outside of Academia that even marginally understand me when I go off on a Philosophy tear.

JanMM

Be sure to relax, breathe deeply and think about fluffy clouds and butterflies as you KICK PEOPLES BUTTS.

DnvrFox

Add Lyrica and Neurontin as two drugs that did not work for my wife. They do work for others. I forgot about them.

goldfinch

Hypnotism is pretty much B.S. if you read the research. It probably isn't trust that interferes with your hypnotism. Instead, you just aren't prone to fantasy or dissociation.

My spouse uses Lyrica for nerve pain. It is fairly effective but not enough alone.

DX-MAN

DAMN, not trying to rub it in, but I'm feeling pretty BLESSED right about now.

I've been on etodolac (Lodine) for about 9 years, 3 herniated lumbar discs; it works MOST of the time....

When I broke the c-bone, I started on oxycodone (Oxycontin), then after the surgery, they put me on the hydrocodone (Vicodin); side effects! I talked to the docs about getting back to the oxy, and they were reluctant -- concerned about the addictive nature of oxy -- wanting instead to treat the side effects with other meds. I absolutely refused THAT, and won the debate, got the oxy. They scrip'd me 40 pills; that was ONE per day for the time I was supposed to be off per doc's orders. I took the one per day, felt fine, and when they ran out, it was time for me to be released to go back to work. Back on the etodolac, and been fine ever since.

I DO have joint deterioration in my shoulders, the right being much worse, but there's nothing much they can do right now. Etodolac helps SOME with that, but mostly I have to suffer with it. Changed my lifting practices, naturally......

Sorry, Tom, I know this doesn't help you; I remember some of your history, with the weight loss and all, that you've shared here, and I do wish I could offer you more. Truly, I get as much benefit from frequent stretching as any medication; I 'pop' my joints, slow stretch my back and legs, and it does the trick as much as anything.

rekmeyata

First off, I'm really sorry you're having to go through that, it's not something I wanted to hear from a forum member. But I want to thank you for always remaining strong around here, I'm encouraged by your confidence and positive attitude, and have high hopes for you because of that.

Obviously whatever you think you may want to try you will need a Doctor to confirm to make sure it's not nutty...like my advice below!

There is extended release morphine, avinza, Kadian, and oxycontin these days. Also there is fentanyl patches a friend of mine uses who has lupus and has had good results. On tougher days my friend on the patch takes Norco. There is all sorts of pain meds out there, something will work for you.

My friend says to look into Japanese style acupuncture (not sure the difference between Japanese and Chinese acupuncture other then he thinks it lasts longer?) anyway, he says he gets relief from that. I would try this, because if it reduces your pain then you don't need as strong of a pain medication, and it won't effect the heart. If does work and your able to reduce your meds then that will be better for your health not having those chemicals in your body or risk becoming addicted to meds.

crtreedude 

I thought one of the requirements for being in P & R is to abandon all hope of sanity...

NealH

I had atrial fib for almost 10 years. Tried about every substance known.....and nothing worked. Went to UNC heart center and told them to fix it or stop it. They did an ablation and I have a new life now. Blood thinner is only helps prevent a stroke but does nothing to resolve or mitigate a-fib. And long term use of Coumadin is associated with hardening of the arteries (from what I have read). Get an ablation and fix the issue.

Tom Stormcrowe

I'm not a candidate for an ablation....thinned heart walls. My AFIB is related to an atypical SA Node and it's apparently congenital. I'll eventually need a pacdemaker, and if the heart wall keeps thinning, a new heart or an advanced Jarvick system.

rekmeyata

Are you on the transplant list? Or are they waiting to see if the heart wall keeps thinning?

They want to do a brain transplant on me because my brain cells keep thinning. I hope that gives you hope that we're still insane. Wait, do two positive hopes make a negative hope? I hope not. Those last statements should pretty much give you all the reasons you need to know why I need that brain transplant!

Sixty Fiver

Cycling has been the best physiotherapy for my back and keeps me off the mind numbing pain killers (or reduces the amount of them I have to take), nerve damage from a burst fracture and axial loading issues mean I need to take rests frequently as gravity is my main enemy. I have a TENS unit that is portable and can set this up to block pain signals although I have to be careful as none of these things are a cure.

My doctor would be happy to load me up on Oxy's and Lyrica but I prefer as holistic an approach as possible and exploit the good days and usually pay attention to my body's signals when I need to lie down, failing that I will find myself in a world of pain.

ModeratedUser150120149

Sorry to intrude.

rekmeyata

I agree with this too.

Some you know I had to have back surgery due to collision with a drunk driver in my company car that killed him and injured by lower back, between the two of us I got the better end of the bargain! But anyway cycling does take my mind off my back because it is good physiotherapy as Sixty fiver said.

late

Tom, you know what I would suggest. Let me if you want to talk about it.

Tom Stormcrowe

Unfortunately, I've gone beyond that stagfe wtih the arthritis. I'm riding a bent, now rather than my FG, for example, and you kn ow how much I loved riding fixed and after a long ride, I can barely move/

late

https://www.autoflower.net/forums/f6...ief-15556.html

goldfinch

I think it is worth a shot. The trouble is reliable supply and LEOs.