What to do for friend w/ chronic debilitating pain?

[AragornElessar]

Oh AragornElessar, I wish things were easier for you too. :( That just sounds terrible. It's also terrible that the doctors have stopped trying to figure out what's wrong or even believing that there's something wrong to fix. (Aren't doctors SUPPOSED to be empathetic? :huh: )

I used to think so. :( I wish things were easier for me too.


I don't think he's hit that point yet. They keep testing him, TRYING to look for something. Which is why I'm still unconvinced that it's cancer - if you're looking for something, you usually find it. I mean on Wednesday, he'd gone in for 2-3 (it was definitely more than one) CT scans in just that one day. I'm sure they aren't dragging him out of bed and into the CT scanner because the nurses have nothing better to do. Or at least I hope not....He's having another procedure, I think a colonoscopy, tomorrow morning. They're going to test him out so much that I think the only other thing to try would be to cut him open and see for themselves. :(

I hope whatever's going on is found and soon for his sake and all of yours as well.


{{{AragornElessar}}}

Unbelievable. Unbelievably awful and you're talking about 10 years of your life with no obvious end in sight?

How do you keep your spirits up and keep going? Are you at least in a situation where you don't have to work or worry about money?

The last two years has not been easy, as now depression's reared it's ugly head and that's half due to what I'm going through and half due to my Dad's own ill health. Factor in my Mom's in deep denial over how things are now and...It has not been fun around here and that's an understatement.

I do crochet and knit for charity, mostly for the Neo Natal Unit in Sudbury, and that has helped a wee bit. However even that's starting to not be enough. Another thing that doesn't help are these "well meaning" people who know my Parents, but don't know me and decide I need a talking to about being positive about my situation.

We're in the middle of nowhere, I'm legally blind and can't drive. Now if what's going on w/me other than that wasn't, I'd be out of here and working somewhere. Mom's now legally blind due to Macular Degeneration and Dad's health is so bad he can't drive anymore. Which means here we are in the middle of nowhere and dependant on people to drive us over to Sudbury, three hours away, when we need to go over there. The latest person who has volunteered was someone from our local Church and while Mom knows her well from the United Church Women's Auxilary, I had never met the woman until two months ago when she dropped me off at my sister's on her way to Toronto.

I'm used to people not getting why I hate it here, I wasn't born nor raised here and my parents were and...Anyway, usually people do listen to me explain *why* I hate it here, but she didn't. She's originally from Toronto and thinks it's just so wonderful and isn't willing to believe that perhaps what is wonderful for one person is Hell for another. Also told me I need to get more involved in the Community. Easy to do when you can drive and everyone else is of your own Generation, but when you're about to turn 40? Not so much.

Not only did I get a lecture on being more positive, complete w/a story about how her Mother couldn't eat solid food when she was near the end of her illness, it was horrible, but her Mom always said how wonderful it was because at least she had something to eat,. That ended up being followed up w/how I shouldn't be so angry and I need to let go of that and the resentment I seem to have...etc...etc...etc... This was paired w/Contempory Christian music the entire way.

As I told my sister, that is the *last* time I ever get a ride w/her. She replied w/rolling her eyes and then wondering why after hearing what I've been through that woman would even begin to think I didn't have a right to be angry about what's happened. Even our Transplant Social Worker in Sudbury told me she'd be worried about me if I *wasn't* angry about all of this.

Then she ended up having to be the Driver for me, my Mom and my Cousin to a Family Funeral a couple of weeks ago and she said something to me that not only she had no right whatsoever to say to me, nor in the manner it was said, but was beyond the wrong time to say it. I let her have it and now Mom keeps going on about how she'll never drive me again. Well, all I have to say about that is one thing. Good!!


((((((AragornElessar)))))
Thanks for sharing your story.
I hope that your activities here have helped you cope with what you deal with on a daily basis.

I honestly don't know what I would do w/out the Internet and various communities I belong to on it. I would have lost it a long time ago w/out it and I know that to be the honest to God truth. And actually, while it's been ten years w/this battle, in total it's actually fifteen when you combine it w/another medical issue I literally had to fight to have looked after. Did you know that even though when your left big toe has completely shifted over towards the left, is under the first two little toes and touching the tip of the third, that means the foot is normal and nothing's wrong w/it?

That took five years of going to various Ortho Surgeons to finally find Dr. Daniels at St. Mike's in Toronto. The ones who didn't do feet wanted to help me, but as they only did hips and knees, couldn't. The ones who did, well...See above.

My first follow up after the joint being taken out and the toe fused, he came over to me w/his Residents in tow and asked me to tell them what I had gone through over the previous five years. Since I'm used to being used as a teaching tool for Residents, which I don't mind as it might help someone else somday, I didn't think anything of it and proceeded to tell them the entire story. After thanking me, he turned and told them when he saw the shape my joint was in in the OR, he was horrified.

It literally broke into pieces as he was taking it out and if things had been allowed to keep going the way they had been, it would have imploded in my foot w/in six months. He then *very strongly* told them to *never* allow any patient of theirs to *ever* go through what I had to go through.

Meanwhile, I was sitting there on the gurney in the Fracture Clinic w/this expression ---> :eek:

Which then had him apologizing because he thought I had been told before that, as he'd sent the report to my Family Doctor. Who I hadn't seen before the Follow Up appt, so...Yeah, just a bit of a shocker to find out about.

I graduated College w/a Diploma in Broadcast Journalism in 1998, had my Internship at CTV Sports and that was the last and only time I ever did anything in the Industry. Between what happened w/my foot and now w/my pain/partial bowel obstruction, I haven't been able to even think of applying for anything. I am on the Disablity Pension here in Ontario and have been since I was old enough to apply for it due to my eye disease taking away my periphal vision, so at least I do have some money coming in, but if I wasn't able to live w/my Parents I don't know what I'd do.

Thanks Everyone for the good wishes. ((((Right back at all of you))))

[Japanfan]

I graduated College w/a Diploma in Broadcast Journalism in 1998, had my Internship at CTV Sports and that was the last and only time I ever did anything in the Industry. Between what happened w/my foot and now w/my pain/partial bowel obstruction, I haven't been able to even think of applying for anything. I am on the Disablity Pension here in Ontario and have been since I was old enough to apply for it due to my eye disease taking away my periphal vision, so at least I do have some money coming in, but if I wasn't able to live w/my Parents I don't know what I'd do.

I'm so sorry again, especially adding the legal blindness, depression and inability to pursue a promising career into the mix.

The courage, patience and tenacity you must be forced to cultivate on a daily basis are beyond admirable. Really an inspiration and a reminder to many I'm sure that we have much to be grateful for and shouldn't indulge in petty complaints.

Hopefully at some point there will be some relief for you - better times ahead - seems like not too much to ask.

[Anita18]

I hope whatever's going on is found and soon for his sake and all of yours as well.
All of us visited him at the hospital today (at the same time :lol: ), and he's looking and feeling a lot better. All the tests are still negative, so he's still planning to go home to France to get more care without having to worry about work. He's only in the US for work, so as long as he stays here, it'll probably be difficult to not think about not being at work, even barring the part about being away from family and most of his friends. My boss has basically told him that there'll be a place for him in the lab if he wants to come back. My boss is pretty great. :)


The last two years has not been easy, as now depression's reared it's ugly head and that's half due to what I'm going through and half due to my Dad's own ill health. Factor in my Mom's in deep denial over how things are now and...It has not been fun around here and that's an understatement.

I do crochet and knit for charity, mostly for the Neo Natal Unit in Sudbury, and that has helped a wee bit. However even that's starting to not be enough. Another thing that doesn't help are these "well meaning" people who know my Parents, but don't know me and decide I need a talking to about being positive about my situation.
That really sucks. :( You're making it work, as all of us to some degree, that's we can ask for, I suppose.

((HUGS)) for support.

[skipaway]

(((AragornElessar))) I am sorry for your travails. I wish you all the best and hope they find something to help you.

[skatesindreams]

My thoughts are with all those here, who struggle with similar challenges.
((((Hugs))))) to each of you.

[skatemommy]

Hugs to all suffering. Anita, I'm not a medical staff but I would keep questioning the liver, pancreas, bile duct issues; especially with jaundice presenting. My SIL has something wrong with her bile duct that is congenital that may present symptoms like Crohns but it is not. She is going to the Mayo Clinic soon (her sister passed very young due to Crohn's like complications). Everyone in a hospital setting needs an advocate...University of Michigan Hospital tried to schedule my dad for an MRI when I politely reminded them he had a pacemaker (no can do) and so got him a CAT scan instead. Hope your friend finds some answers soon.

[Ajax]

Anita18, does he have gastrointestinal problems? Diarrhea etc? I have a friend who developed chronic stomach pain a few years ago. She went through two months of testing for everything under the sun until somebody realized that she has celiac disease. She switched to a gluten-free diet and the pain disappeared completely within a week! I realize it's a long-shot but maybe your friend could ask the doctors if they've considered celiac.

[Anita18]

Anita18, does he have gastrointestinal problems? Diarrhea etc? I have a friend who developed chronic stomach pain a few years ago. She went through two months of testing for everything under the sun until somebody realized that she has celiac disease. She switched to a gluten-free diet and the pain disappeared completely within a week! I realize it's a long-shot but maybe your friend could ask the doctors if they've considered celiac.
I asked him too - I had post-infectious IBS and had pain and bowel issues. He doesn't have any bowel issues and they've tried restricting his diet and it didn't work, so I definitely think it's in the bile/gallbladder/pancreas level somehow.

At any rate, he's planning to go back to France next month so he can concentrate on getting better without worrying about work. And he'll see the top specialist in France within 2 days of getting there, so huzzah for universal healthcare. :rollin:

He's looking at lot better and he's coming to work just to teach us to do what he knows how to do and to finalize the paperwork. I'm really glad he can put his health first and I hope they'll find something.

And he also found out yesterday, that the person who previously had his apartment died of liver cancer. Seriously bad juju! :yikes:

[Smiley0884]

((((((AragornElessar))))) So sorry you have to deal with health problems that prevent you from having the freedom to pursue your career and many other things that people take for granted :(

Anita, sounds like you're doing everything you can to be a good friend :) I know whenever I'm going through a rough time, even if there's nothing specific my friends can do, just knowing that they are there, and willing to help makes me feel better.

Hopefully your friend gets better, and pain free.

[colinmom71]

I live with chronic pain. I have 2 pancreas. I had sever stomach problems and they couldn't figure out why. Then I went to a specialist who knows about this (only 2% of the world has this). I had the same syptems he is having. It's called pancreas divisum (I know I didn't spell it right). But it doesn't show up in CT/MRI test and if you have it long enough the blood work doesn't show up. It affects the bile duct so it backs up the liver and everything. The only way test is an ERCP with a doc who specializes in this. He may want to ask his doctor about the possibility of it. The pain is intense and I know stress and pour eating habits bring on acute attacks. Before they figured it out, they took out my gall bladder and stinted my bile duct. The other thing it could be is a suto (sp) cyst on the pancreas. Hope it all works out for him and your doing a good thing helping him.

What Mysticchic is referring to above is a pseudocyst of the pancreas. My dad was struck by this condition about 27 years ago, and it took months to get an accurate diagnosis. At that time, CT scans couldn't visually appreciate the cyst as his was presenting abnormally inside the pancreas (most pancreatic pseudocysts form on the organ's exterior).

Dad had had digestive upsets for weeks, maybe months, before he came down with an acute pancreatitis attack in fall of 1986, which resulted in a month long hospitalization. The first week or so, we were given 50/50 odds of survival as they feared cancer co-morbid to the pancreatitis. In the end, the pancreatitis responded to medical treatment and later testing concluded in the pseudocyst theory. It turned out that no image testing then was conclusive for a tumor or cyst because the cyst was internal to the pancreas (the vast majority of pancreatic pseudocysts present on the external surface of that organ, making internal cysts difficult to appreciate visually at that time).

Back then, dad's gastro docs essentially chose to surgically treat the "tumor" they couldn't accurately diagnose... It was a successful gamble, though he was left an insulin dependent diabetic due to the surgical loss of much insulin producing tissue while the cyst was excised.

I mention this because I don't think a pseudocyst of the pancreas is necessarily at hand on your friend's health problems. It's worth a mention should he have the unusual condition with which my dad was afflicted (though that's rare but possible)... But, I would think that an MRI would show a problem with the pancreas that a CT scan may not reveal.

What you're describing on your friend's behalf sounds like "bowel death". Either he has an extreme problem with bowel damage due to undiagnosed and severe Celiac's disease, or his problem is blood flow into the intestinal tissue. Look into "ischemic colitis", because quite frankly THIS is what I think is happening to your friend.

I hope this finds you and your friend well, and that he finds good health soon!

[cruisin]

Anita, I have frequent stomach pain. I have IBS, which cannot be seen. It is typically diagnosed when they can't find anything else. I also have severe reflux and very severe inflammation of my esophagus. Last endoscopy showed a small ulceration. Has your friend been put on any proton pump inhibitors? Just to see if they help? Also, jaundice would suggest liver problems, have they checked that? Also, as frustrating as this is, sometimes they just can't find reasons for things. I noticed a strange sort of ache in my chest. They did an echo and found that I have a small amount of pericardial effusion. I have had every test there is to find out why it's there. Checked for auto immune diseases, cancers, connective tissue diseases, inflammatory bowel disease, virus - so far all have come back negative (thankfully). So, the fluid is there, but they have no idea why. I have to have an echo every 4-6 months to monitor whether or not it's increasing. If it stays the same, I'm fine. If it increases, it can become a very serious problem. It stinks knowing something's wrong, but you can't treat it because you don't know what's causing it. As others have said, continue just being the wonderful friend you are. Listen if he wants to talk. Let him know you care and that you feel his frustration. Help in any way you can.

(((AragornElessar)))

[Cachoo]

{{{everyone}}} I reallly do not know how you manage day-to-day sometimes. I have a question: Is it possible to try different "natural" treatments while taking pain killers? Here is what I believe: The people posting here are at times in absolute agony. Yes, morphine, oxy whatever are dangerously addictive and may shorten your life. But quality of life is important and living in such pain everyday sounds terrible. Can the medication be issued while other treatments are attempted? Or am I not making sense at all? If I were in your shoes I'd want anything to stop the pain this instant. And I would be open to try anything but I would need something to alleviate the pain immediately first.

[cruisin]

^^ I think it depends on two things. 1. How bad is the pain. Some people can go through the day with moderate pain and deal with it. 2. what is your pain threshold. Some people tolerate pain better than others. For one person (on a scale of 1 to 10), they might rate their pain as a 3. Another person feeling the same level of pain might rate it as a 1, another might rate it as an 8.

[Sparks]

^^^While that matters, the effects of long term pain can change a person. It sux.
That's why reasonable alternative therapies can work with traditional medicine.

[cruisin]

^^ Yes, that is true, as well.