A Friend, Painkillers, Rheumatoid Arthritis and a Hip Replacement

[Mike 03]

Today I learned that my best friend in the world has been provisionally diagnosed with Rheumatoid Arthritis. She needs a hip replacement. This is a young woman who has suffered for years with disintegrating joints, tendons, and most likely bones.

I'm devastated because I just viewed X-rays of what her hip looks like, and she has suffered the complete annihilation of the cartilage around her hip, and she may also have spinal stenosis and possibly an array of other auto-immune and degenerative disorders.

I'm devastated but not surprised.

This is a woman who had a history of seeking painkillers, so when she would complain of pain, people (including me, way back ten years ago) would be very suspicious and judgmental. She was obviously a faker who enjoyed getting high on Vicodin or whatever she could get her hands on.

A few years ago I was put in charge of leading an "Intervention," which I must tell you is the stupidest thing in the world when it comes to helping someone get off of drugs. It was a huge disaster, and it only made me even more empathetic towards her, because I began to to understand this was someone in huge pain, and she was not seeking painkillers to get high but to alleviate pain.

Since I had been close to her since childhood, I should have seen that. We had played tennis, attended the same university. She had studied an active, very active major. Then she damaged her back running up hills, once with forty pounds of objects in her arms. She broke her ankle. Later she had a spinal tap, spinal headache, vomited in the back of our car while we drove her to an emergency room. My point is that she has been in excruciating pain for years, and a number of people in her life refused to believe this until an X-ray had been taken.

The reason she didn't want a diagnosis is because she is the kind of person who doesn't want a diagnosis. She didn't want to believe it might be RA, or fibromyalgia, or chronic fatigue syndrome or a spinal issue because there is no good way to treat a lot of these illnesses.

The point of this post is that it is dawning on me--as the son of a cancer patient and the friend of someone who at a young age is watching her soft tissue wilt, and has been stigmatized for seeking pain relief--how hard it has become for people in pain to get relief without suffering all sorts of insults, from the sarcasm and cynicism of the doctor to the well-intended but humiliating actions of friends and family.

When I saw an X ray of her hip, I realized that she has been in severe pain for years, and that people in her life were totally wrong to assume they knew more about her pain than she did.

Although there will always be people who abuse painkillers and exploit doctors to obtain them, I think it's even worse to stigmatize and deny care to those who are suffering on the chance that they are lying drug-seekers.

[yardwork]

1. The stigma against people in pain in this country is terrible.

I don't know what our problem is, but the culture of the U.S. toward pain is one of "suck it up." We have excellent pain killers, but there's an attitude that anybody seeking them is some of addict or malingerer. This bizarre attitude even extends toward people dying of terminal illnesses.

I'm so sorry to hear about your friend. I hope that she finds an enlightened doctor.

[Mike 03]

17. Thank you Yardwork, your words mean a lot to me. NT

[BeatleBoot]

2. I'll raise you some Gout

And some Indocin!

Ow, fucking, ouch!

[wryter2000]

3. Gout

Worst pain I ever had in my life! And I had two knee replacements for osteo-arthritis and have it in my back so bad now I'm on crutches to walk any distance. (Doing physical therapy, but I suspect back surgery is in my future.) The gout was the worst!

There are drugs that take care of it, though. It's not something difficult to manage once you realize what it is.

[donco]

5. The first gout attack I had

was in my foot, if I had a hatchet I would have chopped it off. People think it only effects the toe’s, got news for them mine moved all over my feet, ankles, instep. Take a daily allopurinol pill now haven’t had a attack for years, (knock on wood)

[wryter2000]

14. That's what I take, too

Works like a charm.

Mine first appeared on the side of my foot. It took them a while to figure out what it was because that's not the normal place. I once got it in a knuckle on my hand.

[jhrobbins]

16. Allopurinol just doesn't work for me-my cousin swears by it, but not for me.

[BeatleBoot]

24. The first time I got it, I made Mrs. BeatleBoot take me to emergency

because I was certain that my foot and ankle were broke (I woke up in the middle of the night with it). Couldn't even lay a bed sheet on my leg.

X-rays, excruciating throbbing lightning bolts of constant pain, blood tests and the doctor came up to me and my wife and he said,

"Est-ce que vous aimez le bon vivant?" I am in Detroit and the Doctor spoke French to me thinking I wouldn't understand.

I responded, "Oui, un peu..pourquoi?"

Then he gave me a funny look and told me about my Uric Acid level.

They gave me 1,000 mg of Tylenol and told me to follow up with my doctor.

I went through a terrible time for years, but now I am able to control it via diet (3 years since my last attack.) Knock on fake wood.

To put the pain into perspective, my family doctor likened it to "the next best thing to child birth."

I always think of guys like Benjamin Franklin who suffered so badly from it and never had a remedy (their idea was to rub crushed mint leaves on the effected area - what a joke.)

[Diclotican]

32. wryter2000

wryter2000

I know everything about Gout... it is painfully, but luckily, if you can say that, I got it just a few times a year.. And then just in one feet... But it is painfully when it goes, and I have to use penicillin and painkillers to get it out.. But after a few weeks it is okay again... And it takes 6 mounts to next time around... I suspect I have to push my doctor to really get the whole thing checked out so I know what is wrong, and if I have to take medicine to stop it then do it...

Diclotican

Sorry my bad english, not my native language.

[diane in sf]

34. I have gout. I control it with diet to deacidify my blood and fish oil and other anti-

inflammatories. It rarely troubles me. I avoid tomatoes and vinegar and other acidic foods, eat more calcium than magnesium, use buffered vitamin C, evening primrose oil, etc. I went to bloodph.com, their clinic is in the Bay Area, but they have other practitioners around the country. I got tested to see what foods made my blood, saliva, and urine acidic. I changed my diet very slightly and went on a weeks trip to Hawaii where I swam, and walked every day. By the time I came back the symptoms were gone and I'd been suffering three years before that.

It occasionally flares up and hen I just get religious with my diet.

[stevedeshazer]

12. I have it, it's horrible.

I got your indocin and raise you three prednisone.

Oww.

[jhrobbins]

13. I have both gout and RA - I have had gout since I was in my early

thirties and I remember when I would tell people that I had it , I think they thought I was Henry 8 or something - they just didn't know what it was. It is the worst pain I have ever had and RA is certainly no 'walk in the park' )pun intended), but gout is a bear. Also, the additional problem with gout is that sufferers often have heart problems because of gout.
This post comes at a weird time because I am in the middle of an gout episode and I am out of my painkillers and my doctor wants me to come in before he will refill - so I will take a bunch of Aleve and get in as soon as I can ( I used to take Indocin,, but I became allergic to it - it worked the best for me for a long time and I just hate colchicine).

[wryter2000]

15. Try alopurinol

Takes a while for it to work, then you're gout free. My brother got gout in his knee when he was young. He's on alopurinol and has no problems.

[KoKo]

4. I'll call attention to IBS (Irritable Bowel Syndrome) that to this day after decades

of patients complaints and debilitation is still considered Psychosomatic Illness. BTW...it was said some years ago that IBS patients didn't have higher incidence of Colon Cancer due to polyps.

Let me tell you...that theory that's still out there has been blown out of the water with Colon Cancer deaths. I had IBS since I was a teen and told to cut my caffeine intake..yet in my late 40's I ended up with Colon Cancer found because I had to go to four different doctors complaining about "pain in my side" before someone ordered a Cat Scan ...and I had family history of Colin Cancer but they didn't do cat scans for it unless you were in your late 50's or 60's. I would be dead today if that doctor hadn't ordered that CAT scan and found it...

If you have a history of "IBS" get a "Cat Scan" as soon as possible if you are in your 30's and beyond.

Colon cancer is killing young folks because Doctors are holding off screening for insurance payments (if you have insurance) until folks are in mid 50's and beyond.

Remember when Katie Couric's hubby died of it? He was Young! Younger and Younger I'm told by my Gastroenterologist..and folks need to get screened if it's anywhere in your family, for sure and it should be routine for all of us.

As far as IBS goes...it's not treatable...because it's not considered "real."

[Mike 03]

19. I'm with you, this is no joke.

It's a hideous disease, and only recently are there better ways to treat it.

My mentor, when I was just getting out of college, was a person who had Crohn's Disease, or something like that (?)

It destroyed him.

It simply destroyed his life. I wish I could remember exactly what it was. I was really young at the time and I can't remember what he suffered from. but it was along the same lines. He was one of the kindest people you could ever meet, and he lived in agony.

[mopinko]

27. god forbid you have something that is not real.

boy howdy do i know that one. what this woman endured is common, and sadly, more likely to happen to women.

and i have to add my anecdote to your theory- i have had ibs, along with fibro, for as long as i can remember. i had a pre-cancerous polyp removed a few years ago. i had 2 aunts that died of it. those 2 aunts saved my life- i got a that colonoscopy at 45, not because of the pain i was in, but because of the history.
always helps to have a couple of dead relatives to serve as character witnesses.

[RevolutionStartsNow]

6. Pain management research is greatly needed

The pain medication prescribed in this country is so addictive. I know of so many people who became addicted to pain medication after an accident or injury, and I know just as many people who can't even get proper relief from most pain medication, not without serious side effects.

My sister has chronic fatigue, and she has been told to "suck it up" or that it's all in her head. She's using diet and exericse to combat it, it's a very slow recovery process.

My stepmom has fibro, and she has gotten very little relief from traditional medicine. Massage and acupuncture have helped some, but she's still in almost constant pain.

I heard about a plant from Thailand that has some promising potential, I think it's called Kratom, and it's like an opiate-type medicine but without the worst effects of most opiates. But of course whatever active properties it has will likely be synthesized into something dangerously addictive, or with bad side effects. Or people will use it to get high, and it will be banned.

What a shame that we can't help people who live in constant pain, I think it's tragic.

[Mike 03]

18. Thanks for this post, it really hits home.

When I was in high school, I knew a girl who committed suicide because she had chronic fatigue syndrome and could get no real help.

Everything you said is true. Even I'm afraid to go to a doctor now, and I just exercise constantly and eat as well as I can and pray I can avoid a total physical breakdown.

[RevolutionStartsNow]

26. Chronic fatigue is truly awful

There's still no real consensus in the medical community about its cause, or a treatment...My sister has tried just about everything. It does seem to go hand-in-hand with depression, and she's been on anti-depressants for years, but they don't help with the CFS. She will do better for awhile, then get hit hard by it again. Her symptoms are more than just fatigue, she also has pains in her legs and arms, and horrible nightmares. She's only 44, and had to quit working.

Meanwhile plenty of people -- even in our family -- just think she needs to "cheer up" or "get some rest."
What a shame that so little is done about this.

You shouldn't have to live in fear, though, Mike. Just take care of yourself, like you're doing -- excercise and eat well, but also try to have peace in your life, I suspect that has something to do with avoiding the routine sicknesses that come around.

Take care of yourself.

[Dappleganger]

7. Chronic pain is horrible

Not just the physical pain, but the toll it takes on a person's mental health is unbelievable. Treating their mental health while also giving the relief (such as through a pain clinic) can be a huge help. A support group is helpful too--nobody knows what you're going through unless they've been through it or are in it too.

Chronic pain also affects a person's ability to sleep which can directly affect mental health.

[knitter4democracy]

9. That's exactly right.

You only have so much energy, and when you're in pain, the pain saps you of 90% of your energy (less on a good day). After awhile, you get so down and depressed and can't see any hope, any way life could be without the pain. Pain changes you.

[Mike 03]

21. Exactly. My father was going down this path. Thankfully he got into the Mayo Clinic

and they helped him.

But so many people, like me, have no way of ever getting into the Mayo.

There has to be pain management for everyone. It is crucial.

[tblue37]

35. I never seem to suffer from depression, but the pain definitely makes you tired all the time,

because you use all your energy dealing with it.

[knitter4democracy]

40. Definitely exhaustion.

It's so hard to deal with pain on a daily basis.

[knitter4democracy]

8. I had chronic appendicitis for ten years that was misdiagnosed.

I can't take narcotics (don't work on me except to make me sick or crazy), so I was left with just ibuprofen most of the time. My internist STBX-husband often told me that my pain was in my head (probably out of guilt and anger that he could treat his patients' pain but not his wife's and other messed up thinking), that I used it to manipulate him and everyone around me, and that I was selfish. It wasn't until I finally talked the specialist into an exploratory surgery that we found out what it really was, and in the hospital, my STBX actually apologized for not believing me or taking my pain seriously. Of course, he changed his mind a week and a half later, but that's another story.

The reality is, unless you're in chronic pain or have been through it, you have no idea how hard it really is. When you're in pain, you don't get a high off of painkillers--you often don't even get all that much relief, just some. You end up switching meds constantly as your body re-routes the pain onto new pathways, and it's enormously difficult to live in massive pain, which so few people really understand.

When I would talk with women friends, I would just say that I was having cramps, but even that didn't begin to explain the level of my pain. Let's just say that I found natural childbirth to be easier than my pain when it was at its worst. The only pain I've ever had worse than the appendicitis pain was when I woke up from the kidney surgery with only the numbing agent in the duramorph working.

[JuniperLea]

10. Inflammatory diseases and diet

There are a lot of new studies about inflammatory diseases and diet. You might do your friend a favor by Googling up a few studies, and make lists of foods to avoid and those to increase. There are people with RA and diabetes who no longer takes any drugs for pain or blood sugar correction.

[havocmom]

20. good advice, but know it is not the cure-all for everyone

How great if it were, but alas...

Someday, they will find much to be caused by various food allergies, I am sure, but some is in our genes and not much to be done about that at present. But I understand some good people are working on that too.

[knitter4democracy]

22. I wish that worked for everyone.

It doesn't, but it would be awesome if it did.

[Warpy]

30. Good diet helps all conditions but is no substitute

for appropriate medical treatment.

RA is serious. It can put you into a wheel chair very quickly and in some cases it can be fatal.

It needs treatment, not health food.

[Individualist]

37. Thank you for pointing that out

I would encourage anyone with joint pain to see a doctor as soon as possible. Too many people are uninformed and think rheumatoid arthritis is the same as osteoarthritis. I can't emphasize enough that early treatment for RA is crucial.

[Tangerine LaBamba]

11. I hope your friend will be all right,

or, at the very least, improved. I hope her pain will ease, that her mobility will be normal, and that she finds a doctor who understands what she's going through.

Myself, I had the same kind of thing happened. I had a broken femur, horrid pain, and ended up in the ER three different times. Was admitted three times, and treated for cardiac problems (which I didn't have), a spinal problem (which I didn't have), and finally was admitted to the psych ward where they tried to feed me anti-psychotic meds and told me I was delusional, that I was just pretending not to be able to walk to get attention.

It took a smart radiologist who looked at an xray of my belly - I was throwing up constantly from the pain - who said to the ER doctor, "Do you realize your patient has a broken leg?"

A year later, I walked out of the rehab center. A year. And I'm hardly inarticulate. I'm a lawyer, and no one would listen to me. I shudder to think of what happens to people less mouthy than I.

Pain makes us all victims.

Now, I have RA, and the drugs are helping. My rheumatologist is hip, and writes scripts of the proper opiates that make my days normal. She gets it.

I hope your friend finds a doctor like mine. I wish her good luck, and I know she's fortunate to have a friend like you. Be good to her.

:toast:

[Individualist]

23. I sympathize with your friend

I've had RA for 14 years. Ask her to check with her insurance company (if she's insured) to see if they would cover most of the expense of Humira, then have her talk to a rheumatologist about getting it prescribed. I took Humira for four years, and it was a miracle drug for me. No more pain once it took effect and significantly slowed joint damage. Unfortunately I now have severe congestive heart failure as well and can no longer take it.

[MuseRider]

25. I have RA and the pain can be

intolerable. Hot pokers in your joints is the closest I can come to describing it and when someone grabs your hands you want to die. Get her to a doctor. Many of the drugs are almost as bad as the RA but there will be something that works to control most of it that will not make her sick. If it is really bad, and it sounds like it is, there are drugs that will slow down the destruction of her joints. The post above mentions one. They are very expensive and I have no experience with them because I have been very lucky that my disease has progressed at a very slow rate. It hurts but my joints are still relatively good.

She is lucky to have you as a friend, you are a compassionate and understanding person. :)

[truedelphi]

28. Thank you for putting this out there.

I've heard that these days, those who have the insurance or the money can get a morphine pump that shoves the juice right at the affected part. This way you are pain free, and you are not getting high - just the part of your body that has the spasms or arthritis is getting the effects of the meds.

Not sure if it has been developped for anyone with problems in their hands or feet. But for back patients - it should do the trick, for those who can somehow cover the costs.

[Warpy]

29. I saw people display classic drug seeking behavior

two days after open heart surgery when Nurse Tylenol had been taking care of them. Drug seeking behavior doesn't signal anything but a desperate need for relief, whether of pain or an addiction.

It's too bad your friend didn't seek a diagnosis. She's dead wrong about our ability to help slow the progress of rheumatoid arthritis. She might have been able to delay that hip replacement a decade or more.

Untreated pain is often a fatal condition because people seek extreme ways to end it, including suicide.

We're starting to end the drug phobic treatment paradigm in the medical profession. We need to end it in law enforcement and social relationships.

People need to be able to treat their pain. If they're smart, they'll get a workup to see where that pain is coming from and if it can be cured completely. In any case, pain is a serious condition all by itself. It needs appropriate treatment.

[FloridaJudy]

31. I sympathize

I had bouts of severe abdominal pain for decades, and was told it was due to "stress" or irritable bowel, because all my X-rays and lab tests were normal. By the time a doctor finally decided my symptoms were bad enough to justify exploratory surgery, it was too late to save several feet of bowel - they were blocked by severe endometriosis. The surgeon later said "The pain must have been unreal".

It was. Believe me, it was! But nobody did believe me.

[tblue37]

33. I suffer from chronic pain, too, but fortunately, my doctor is

one of those who believes that pain needs to be managed in a way that allows one to work, to sleep, to actually enjoy life.

For a long time I actively resisted his recommendations for pain medication. He had to talk me into the stuff I am on now--but oh, my goodness, what a difference it makes. Fortunately, I don't have anyone giving me crap about my use of medication for pain. I suspect it is because so many people in my life watched me suffer while refusing to use the sorts of meds I needed to be using. They saw how terrible my pain was and how stubborn I was about seekign true releif--and they see the difference the meds make.

[Olney Blue]

36. My husband and stepdaughter have fibromyalgia and are in constant pain.

It is hard to see them suffer, and I know that their constant pain is not just a psychological illusion.

[JerseygirlCT]

38. If it helps any to know...

my mom has had 3, and my (younger) sister one already. They both need another sometime soon.

But the difference between the first operations on my mom years ago and the more recent ones is night and day. The recovery is much easier, and much faster than it was - they'll have your friend up and moving around the next day, most likely!

And the removal of that pain is truly a miracle to see. My mom had spent most of my life in that kind of agonizing pain - (without complaining, too) - to see it gone was so wonderful.

Sounds like your friend will have some other hurdles to go over too - but the hip replacement, while a giant PITA to get through, may result in a fair amount of relief.

[ThomCat]

39. "You don't look like you have severe pain."

I get that a lot. What should I look like? Should I have gray sallow skin and sunken eyes? Should I be wrapped up into myself and be irritable all the time?

There will always be judgemental people who will try to decide who really has pain and who doesn't. There will always be people who try to decide who deseves help and who doesn't?

One of the hardest things to do is to help people without judgement just because it's the right thing to do.

[RB TexLa]

41. Mine is osteoarthritis, I just live with the pain, stays at a 5 and jumps to a 8 or so from time to

time. The numbness and tingling from it is weird at first but I've gotten use to it and when I fall from it, I usually get up pretty quick. It's just part of life, I'm not giving my money to someone for pain medication, I would feel too guilty spending money just so I could get rid of pain. Would seem selfish to me. I'm hoping to get another 15 years out of my hip.