Mind over matter? Mind over pain????

I have noticed many people with chronic pain are also cat people. Cats are just more gentile! ;-)

Originally Posted by NoRachelHere

I am on plaquenil too!!!!

I agree. If it is to feel better I am up for it. There is a beautiful poem someone wrote relating to Lupus that touches on that topic. Alot of the treatments for Lupus are toxic to the body. In there is says that she would rather shorten her life time here on earth and anjoy every moment than live in a horrible ammount of pain, and never enjoy another day!

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According to what I have read plaquenil is used to treat Lupus, Rheumatoid Arthritis and Malaria. I have Rheumatoid Arthritis.

Because it can cause eye damage I am reminded by both my Rheumatologist and my Primary about having regular eye exams.

In my first post I forgot to mention that I also take Methotrexate. This is another lovely drug that helps a great deal but also can be toxic. Now I have to do blood testing every three months to check for liver damage.

Originally Posted by strange_wings

Gosh, when did this turn into a chronic pain support thread?

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Support is good. I find that very few people understand my paid. Most think I am just cranky. They have no idea what I have to deal with on a regular basis.

Originally Posted by NoRachelHere

I have noticed many people with chronic pain are also cat people. Cats are just more gentile! ;-)

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You don't have to walk the cat.


Plaquenil is used to treat quite of few of the autoimmune arthritises, AS and PA are the ones I'm more familiar with it being used as a treatment for.
CheshireCat - I hope you're taking folic acid with the methotrexate -it can help protect you a bit and hopefully prevent some hairloss.

The best way to describe the pain associated with lupus is that it is the same as RA. So, I can easily associate!!!

I'm sorry to hear that you're in so much pain. When I was in a lot of pain, I found deep breathing and relaxation exercises to help a bit. Acupuncture has been very helpful too - if you get a skilled practitioner, it may really help. Try looking up pain management centers or doctors in your area and asking if they have any local practitioner they recommend. TENS, as also previously suggested, can help a lot too - it sort of 'drowns out' the pain nerve signals electrically. This link may help a bit too - it lists various pain management techniques: http://www.rsi.org.au/managing.htm

Your doctor needs to get a grip - if your arm is so bad that you need surgery, then of course you're a candidate for pain medication. If the DEA is going to come after a doctor for giving pain medication to someone who is in need of surgery, then they need a serious reality check. It's ridiculous that people in pain should suffer needlessly, just to keep a few people from abusing pain medication.

I used to be strongly against taking anything, but then after one of our dogs went through neck problems and DH & I had a long discussion about quality of life vs. quantity (concern about Rimadyl's safety), and decided on quality and continued the pain medicines, I had a bit of a revelation - why was I unwilling to apply that philosophy to my own pain? So I went back to the doctor and requested some pain medicine and found that it helped tremendously - just breaking the pain cycle gave my body enough respite from the constant stress and pain to begin healing. Pain is incredibly stressful, and unremitting pain creates a vicious cycle - it causes stress and tension, which exacerbates the pain, which interferes with sleep, which impedes healing, which causes more stress, tension, and pain, etc. Once the worst of the pain is treated with truly effective medication so you can rest at night, it's much easier to cope with pain during the day.

Tramadol didn't work that well for me, but it did help more than NSAIDS (which I can no longer take because they gave me an ulcer - even Celebrex tears up my stomach now. Please be careful and ALWAYS eat something before you take an NSAID, no matter how busy you are). Tylenol with Codeine helped a lot, enabling me to get some much-needed undisturbed rest. I believe it may have the potential to be addictive, but it should be fine if used temporarily as needed before and after the surgery.

Think back about how you are when you talk to your doctor - do you try to be stoic about it, and minimize how much pain you're really in? Many doctors don't understand how stoic women can be, and assume that unless we're wailing and in tears that we must not really be in pain. Thankfully, you usually won't have to be hysterical to get a doctor to pay attention to your pain, you should just need to plan ahead and be assertive to get their attention: try keeping a log of your pain levels and how they interfere with your life, activities, and mood, including information about what medications you're already taking and what effect (or not) they have. Present your doctor with it at your next visit. Here's a link with a good article with tips on how to talk to doctors: http://www.cancer.prostate-help.org/catalkd.htm
I found it to be very helpful in getting my doctor to treat me with a little more respect and to be more forthcoming with information and ideas.

If there's any way you can get help with your daily chores (family, friends, or hire a neighbor's kid who needs some extra money), try voice activated software for your typing, and lower your standards of cleanliness in your household a little if possible, that would probably help a lot. Remember that we only get one body and you MUST do everything possible to take care of it.

I hope your surgery goes well, and that you're feeling better soon!

Originally Posted by tuxedokitties

Remember that we only get one body and you MUST do everything possible to take care of it.

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The gospel truth!

Heidi, you should not have to live with that level of pain. I understand the doctors are hesitant to prescribe anything stronger, but at some point it becomes a quality of life issue. Surely the orthpedic surgeon understands how bad this pain can be?

Ultram/Tramadol are a different class of narcotic. They can be refilled with a phone-in prescription, which is not the case with most narcotics. It is a synthetic, non-morphine based narcotic that supposedly does not create dependence (certainly not in the way that percoset, vicodin, or oxycontin would).

As you know, I know the effects of chronic pain. It affects your sense of well-being, your moods, your sleep, your memory, and it is not something you should have to live with.

...and while the pain Gary experiences is a very different pain, one thing he does that I think helps him deal with the pain is breathe. I know that sounds stupid, but taking a minute to close your eyes and focus on your breathing when things are getting bad or you're having a pain spike can help refocus the attention - and - help relieve some stress, of which you're experiencing plenty from the pain alone.

I do have tips for Earl on being a supporter of someone living with chronic pain.

The problem from which you suffer does not seem like one that physical therapy would help, though I really don't know. It MAY be something acupuncture can help.

But look into the breathing. Gary doesn't do it in any organized kind of fashion - he just closes his eyes and does a rapid deep breathing, slowing it down into long, deep breaths.

I took a course in Hatha Yoga offered by the Himalayan Institute in NYC many years ago. It was NOT the Hatha Yoga that is offered at places where you work out. The very first thing they did was teach us to breathe. So call it Yoga, call it meditation, call it breathing exercises - try doing a search online for Pranayama Breathing or Pranayama Yoga. You don't need to get involved in all the extraneous philosophy or whatever - just look for descriptions of the beginning breathing and alternate nostril breathing exercises. Doing this before you go to work for 10 - 15 minutes or when you come home from work - or a quick trip to the bathroom (if you feel strange sitting at your desk breathing somewhat strangely or loudly with your eyes closed) at work when your wrist is really killing for a quick "breathing refocus" might help you make it through to the surgery - which I really hope is an option and if so that it WILL help.

Also - is there any point to taking glucosamine tablets? Is the problem only the bone? Because if you can "boost up" the cartiledge to help pad the bone - would that help at all?



Laurie

Thank you, everyone. I really appreciate the support and ideas.

To give a little background on my situation, this has really only been going on for almost 4 months now, but it's been a truly miserable 4 months! I've been wearing a brace (limiting movement), but that's become a Catch-22: it hurts if I move it too much (without the brace), but it hurts if there is too much compression (with the brace). I've had occupational therapy, which did help a lot with the nerve pain that I was having when this started. So all of you with nerve pain, you have my utmost sympathy and empathy - but I did come up with some really good horrific descriptions for what I was feeling. Guess I still have that horror writing in my brain somewhere. I've been on the NSAID since almost the beginning. I had an MRI and an arthroscopy (injecting a contrast dye directly into the wrist to see if there are any tears or leisions in the TFCC cartilage), both of which were negative. The only thing that has shown is that there is a positive ulnar deviation. (The radius and ulna are supposed to be parallel, my ulna is longer.)

My doctor has said from the beginning that she wanted surgery to be the last option, but from what I can tell we're running out of options. However, there still isn't a definitive diagnosis as to why I hurt except for the positive ulnar deviation, which in and of itself shouldn't be causing this until there are tears or leisions in the TFCC or ligaments. It's one of those cases where the doctors are puzzled, but obviously *something* is going on.

Back in the summer i had sevear shoulder and neck problems, it started out as i thought i had slept wrong, and progressed into excrusiating pain to the point all i could do was sit and cry and try to sleep, but even sleep was hard several times i would litterally pass out from the pain. My head, neck, shoulder and chest hurt so bad i thought i was going to die. My blood pressure went through the roof and i went to the ER several times. The first dr told me i had a neck cramp from moving the wrong way and gave me phenagran and tordol and sent me home, he wasnt even in my room for 3 minutes before he decided what was wrong. He actually acted like i was disturbing him! The second time i went to a different ER they litterally thought i was having a heart attack. The ER of course went into a panic, running tests doing EKGs, CATscans and a bunch of blood work. He initially gave me asprin and nitroglycerin after all the tests came back inconclusive about 30 minutes later he gave me 150 miligram shot of phenagrin, a shot of tordol and a shot of dilaudid. Then put me on the dilaudid and phenagrin. After about a week i could no longer stand the pain again, even with meds. I went back to the ER again they did cat scans and everything again and ended up giving me phenagran and tordol shots and a prescription for loratab (which i had previously told him i cant take). I finaly got into my regular dr. who again gave me shots of tordol and phenagrin another prescription for lortabs (again after being repedidly told i can NOT take them they make me very sick. So lets recap, in two months i was issued two different prescriptions for Lortabs, prescrips for dilaudid, prescriptions for phenagrin and never had any certain diagnosis for what might be wrong with me. One day late in the summer my great uncle happened to be visiting my mom. After talking with him he knew what was wrong. He had me stand in front of him while he massaged my shoulders and neck, moving slowly down onto my shoulder blades. He suddenly stopped, this 73 year old man with no medical training found the problem. Boy had he ever found it, just as his finger hit it, i about went to my knees, it felt like someone had stabbed me in the back with a hot knife. My regular dr later verified it. I had a large cyst growing on my shoulder blade which had to be removed.

My point in this story is make sure what you are being treated for before they do any surgery, get a second opinion and if you arent happy a third. Dr's tend to give out meds that can have serious consequences without much thought. And also often times dont put much thought into letting someone live with pain and refusing to prescribe meds that could make a big difference in the quality of life of the patient.

i wonder if the dr lived with that kind of pain if he would be a little quicker to write out prescriptions. Also just a thought but if he is doing what he should, why should he care how much he is scrutinized about the prescriptions he writes? If you got nothing to hide, why hide?

The Botox injections are not normally done for migrains, but TMJ. (I have it, I GOT BOTOX WITHOUT EVEN HAVING WRINKLES!! LOL)

Im so sorry you're having to go through that kind of pain. I would switch dr. or at least get a second opinion!! Im sorry but I dont think they should not prescribe something because other people abuse it! You're in pain. Its not like you're going to use it for Poops & Giggles! Good luck to you and please let us know how you're doing!

Heidi - I don't know where my head was. HELLO? (Talking to self).

You know a lot of what we've been going through with Gary. His neurologist was always unwilling to write a scrip for anything too heavy (narcotic-wise), and when he would write a scrip for a narcotic, it was for an amount that just wasn't worth bothering with (for Gary's situation). Because he ran out of non-narcotic options after a little over a year, he finally recommended that Gary see a pain management doc.

So.... ask your orthopeadic surgeon for a referral to a Pain Management doctor. THIS IS EXACTLY WHAT THEY DEAL WITH ALL THE TIME. People in chronic pain. They don't happily hand out crazy narcotic scrips for anything - but they don't have the same concerns about the DEA issues or the stigma that other Docs many have, because their entire practice is about dealing with quality of life - and that's what this is about. The usually make you take a pee test to make sure you're not getting scrips from other docs (aren't abusing meds) - and to make sure you're taking the drugs (not selling them). But they work with you to find the right pain killer for the amount of pain, and are used to working with dealing with the trade-off between the "buzz" from narcotics and the pain relief from narcotics and your need to still work and function, sleep and communicate.

Regular doctors and surgeons aren't necessarily comfortable in dealing with meds for the pain, because they're used to correcting the situation. That's why you ask for the referral to a pain management doctor - it communicates how bad it is for you, and it gets you to someone who is used to dealing with someone in chronic pain.

Laurie

Oh - I forgot to tell you. We polled everyone in the waiting room at the pain management doc to see how they deal with the chronic pain. Most said "the meds," or doing things to take their mind off it. But one guy whole-heartedly endorsed listening to Anita Baker with headphones (and he was in a car wreck - had a disc removed from his neck, can barely walk - bad knees, bad ankles - little mobility - LOTS of pain ).

Laurie