What to do for friend w/ chronic debilitating pain?

Discussion in 'Off The Beaten Track' started by Anita18, Apr 18, 2012.

  1. Anita18

    Anita18 Well-Known Member

    11,214
    1,039
    113
    I just got a text this morning from my coworker who checked himself into the ER. :(

    For the past couple of months, he's been suffering from severe abdominal pain. He's gone to doctors several times a week now, trying to see what's wrong. He's gone through countless CT scans, endoscopies, they even put in a stent for his gallbladder when he developed jaundice, but otherwise nothing is wrong. He even went to a renowned gastroenterologist an hour away, and he found nothing. It's really sapped his spirits.

    The pain had been recently manageable with painkillers (yay oxycontin) but this week nothing has helped, which is why he went to the hospital this morning since the pain had just gotten so bad. I have to stay behind for a bit to walk his dog this afternoon (poor doggie :( ) but I plan on visiting him this evening if I can.

    They're doing another CT scan now and another endoscopy to change out the stent. If it's even that.

    I talked with him yesterday afternoon, and frankly, he looks like utter hell. He's got anxiety on top of everything, so the stress of having bad pain and not knowing where it's coming from is seriously not helping. He's also got personal problems with the stress of his longtime gf recently leaving him. He has no other friends here besides us. His family is back in France, and he's said he will go back if there's nothing more that can be done medically here. At least over there, he wouldn't have to worry about insurance approving anything. :eek:

    He's just so tired of having to deal with the pain mostly, just tired of it. He hasn't given up quite yet on seeing doctors and continues to go to work as his pain allows him. But he may be just about ready to give up. :(

    Is there anything I can do? I just want to be able to help him, but obviously if it's stress-related, he can only help himself. Seeing him so defeated is really terrible, and I think we're all standing on sidelines wishing we could help him but being unable to. :(
     
  2. Sparks

    Sparks Well-Known Member

    7,246
    2,026
    113
    I'm sorry about your friend. As someone who is struggling with chronic pain, I can only advise a couple of things.
    * There may be times he doesn't want to see or talk to anyone. Be patient and supportive. Anxiety and depression can be common, so don't try to direct his life...just listen. If he shuts you out, remember it is temporary and don't take it personally.
    *DO check on him and its very nice of you to walk his dog. Bring him food if you can. Ask him if you can run errands - go to the pharmacy, light shopping, etc.
    Good luck to you. :)
     
  3. Anita18

    Anita18 Well-Known Member

    11,214
    1,039
    113
    Yeah I was gonna suggest going out to the beach this weekend, but I dunno if he'll be in shape to. Is that too pushy?

    I just want to help. :(
     
  4. Sparks

    Sparks Well-Known Member

    7,246
    2,026
    113
    I don't think it's too pushy, but if he says 'no', let it be.
    Then you can take me to the beach! ;)
    I know how hard it can be to feel helpless. :(
     
  5. sk8pics

    sk8pics Well-Known Member

    3,561
    674
    113
    My suggestion is to just ask him what you can do to help. If he needs to vent when you ask that, let him. And then perhaps he'll tell you what you can do. Maybe as simple as continuing to take his dog for walks. I know when I was in the hospital I worried about who was going to take care of my cats. Or maybe he'd appreciate company when he walked the dog, in case the pain gets too bad during the walk? Anyway, this is my suggestion.
     
  6. Japanfan

    Japanfan Well-Known Member

    13,003
    1,801
    113
    I've known a few people who live with chronic pain and it looks like a hellish existence to me.

    There are workshops and clinics for dealing with chronic pain and I've heard they help.

    And the problem with painkillers is that they can be addictive and can cause something called 'rebound', which I assume means the pain comes back double when the medication is stopped. One person I know with chronic back pain who is addicted to painkillers actually called emergency to take him to the hospital for morphine one night.

    This person has had innumerable tests and recently had a procedure done to paralyze parts of his back (something like that). I don't know if it worked. It has taken him a very long time to get a diagnosis though.

    I would encourage your friends to keep trying to find the source of the problem. Even see alternative practitioners - acupuncture can do wonders for pain, or so I've heard.
     
  7. smileyskate

    smileyskate New Member

    667
    27
    0
    I agree with encouraging alternative practitioners, acu, massage, reflexology, maybe some physical therapy. Try ice and/or heat for brief periods to the area. Also, IF he is open to it, get him some books (even used on Amazon or half.com, etc.) from Dr. Sarno or other related practitioners. There is another doc out there with a similar book, I think it refers to back pain, but the same theories apply. It may help his mind or give him other ideas about pain sources. Hope it helps.
     
  8. Anita18

    Anita18 Well-Known Member

    11,214
    1,039
    113
    Thing is, back when we thought it was a digestive issue, I pumped his brain full of alternative possibilities. :lol: Not acupuncture, but he did try some herbal medicines. My mom refused to take prescription painkillers after surgery, so she drank Chinese herbal teas and they helped.

    Part of it is also an issue of what insurance will cover. I'll bring it up, though. At this point, it really wouldn't hurt any more than it has been. Thanks for the advice, y'all. :)

    My other coworker took his dog home with her for a few days (since I have a cat and they probably wouldn't get along), and I have half a mind to wash his dishes. He's got a sink full of dirty dishes, probably not in the mood to do any housecleaning...
     
  9. smileyskate

    smileyskate New Member

    667
    27
    0
    You sound like a great friend Anita. I hear you about the insurance but maybe they will set up a payment plan or work with him on costs, while he writes an appeal to the insurer, maybe along with a doctor's note. Cleaning the dishes sounds like a nice favor. Hopefully it will help his anxiety (he should be treating it too) seeing the kitchen sink cleared out.
     
  10. danceronice

    danceronice Corgi Wrangler

    6,485
    524
    113
    I'm not clear, but since they're treating it as if it may be gall bladder or gastric, I'm going to assume this isn't chronic muscle ache, back pain, etc. but something localized in the torso? There's a lot of things that can be if it's really not gastric or gallstones and they're generally not great things to have, so honestly, I'd just stick to Sparks' advice until they figure out what is really causing the pain. Offer to help where you can, and if he's not feeling social/talkative, give him space. I wouldn't go suggesting any alternative-therapy this and Chinese-medicine that because there may be something that needs a lot more serious treatment. Leave medicine to medical doctors and focus on helping him with daily stress--if he's in so much pain he's going to the ER he probably REALLY does not feel like cooking, washing dishes, walking the dog...when I got out of the hospital and was completely zonked on prednisone (which does what it has to do but makes the patient feel like crap) it was a HUGE relief to have my mother stay with me to help with things like cooking, laundry, driving to the doctor on days when I was almost too tired to move, even feeding the betta fish. Little stuff is HUGE when you're feeling that awful. I would bet he would really appreciate having his dishes cleaned.
     
  11. meggonzo

    meggonzo Well-Known Member

    1,746
    348
    83
    Complementary (alternative) therapy would not solve his main problem, but it would help to alleviate some of his stress and possibly his pain - look into healing touch or Reiki. There are probably volunteers or practitioners at the hospital that are certified.
     
  12. Anita18

    Anita18 Well-Known Member

    11,214
    1,039
    113
    Yeah, I saw him last night and it was really bad. They gave him painkillers in the morning which worked like a breeze, but in the evening, they didn't work nearly as well. And he hadn't been given his evening dose when I came in and he really seemed to be in excruciating "don't talk to me about alternative treatments right now, just make this stop!" kind of pain. He said it was the worst it had ever been in the past 3 months. And he had a high fever too, which generally says that his body is not pleased with something internal.

    Being in a hospital generally sucks, let alone being in one in such pain and alone most of the time, so I figured I'd stay for a while and keep him company at least. He seemed to appreciate it. My boss had been there too earlier, reading him "A Confederacy of Dunces". :lol: Again, not sure if it helped with the pain, but at least it alleviated the "being alone in the hospital" part.

    The other coworker even gave his dog a bath, which isn't surprising in the least :rofl:, and sent pics of her kids putting multiple towels on her ("They say she's cold!"), with the dog looking bewildered. Cheered him up a bit. :lol:
     
  13. Sparks

    Sparks Well-Known Member

    7,246
    2,026
    113
    That's nice. You can't fix it...he doesn't want his friends to fix it, he just needs support. Good job.
     
  14. Cachoo

    Cachoo Well-Known Member

    2,539
    290
    83
    Jaundice, high fever, intolerable pain--how frustrating and excrutiating this must be for him as no solution seems apparent. I too think you are a great friend for just being there for him and doing tasks that he feels too bad to attempt. Would that we could conjure up "House" for him...
     
  15. nursebetty

    nursebetty New Member

    227
    11
    0
    Jaundice doesn't sound like stress related. Maybe you could ask him about calling some family. Sounds like he needs someone to take care of him or at least help him take care of himself. Remind the nurses about his medicine for one thing and I bet no one is making sure he drinks fluids and such. I'm sure just knowing someone is taking care of his dog and apartment is a load of his mind. Keep up the good work.
     
  16. Southpaw

    Southpaw Saint Smugpawski

    12,910
    3,825
    113
    Please please PLEASE tell me your boss put on different voices for each character. That book just begs for dramatik reading. I can't think of a better book to read to a hospital patient than that one. I bet he really appreciated it.
     
  17. Anita18

    Anita18 Well-Known Member

    11,214
    1,039
    113
    Believe me, his family calls all the time. :)

    My other coworker was actually physically taking care of him after he broke up with his girlfriend. As in, was having him over for dinner with her kids and making him lunch every day. But she has two kids to feed on her own with a grad student budget, so she just couldn't afford it anymore. This was way before the pain started to get bad, though. Naturally she partly blames herself for his downward spiral. :lol: She's such a sweetheart. I figure, if he wants to talk, I'll totally listen, but the guy is 30 years old and I'm sure he can get his own dinner somehow. :p

    I don't know, I wasn't there. I should ask, though. :lol: My boss is pretty great.


    My coworker was transferred to another hospital today, and it's apparently super-old and not nearly as nice as the original one. Hopefully they'll still be able to take care of him. :eek:
     
  18. mysticchic

    mysticchic Well-Known Member

    5,600
    965
    113
    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.
     
    Last edited: Apr 21, 2012
  19. Japanfan

    Japanfan Well-Known Member

    13,003
    1,801
    113
    {{{mysticchic}}}} You are so brave.

    That book is perhaps my favourite of all time, but I'm not sure having it read aloud while one is overwhelmed by pain would help one to appreciate the brilliance and humour of the book.

    I hope you friend finds relief soon Anita 18. I can't imagine being in his situation. I think I'd be screaming for more drugs and kicking up such a fuss that (hopefully) someone would give them to me.
     
    mysticchic and (deleted member) like this.
  20. Anita18

    Anita18 Well-Known Member

    11,214
    1,039
    113
    Thank you so much for the info - I'm not sure if they've considered this, but he mentioned they were looking into pancreatitis. Not sure if they ruled that out.

    What treatments do they have for pancreas divisum, once you were properly diagnosed? Did anything help with the pain?

    I did actually go through A LOT of books when I was severely nauseous with the stomach flu and was home for a week. Then again all I had to do was not move and I was relatively okay...

    Seriously, I would be doing the same thing you'd be. :lol: My menstrual cramps can be pretty bad, but at least I can lie down and go to sleep knowing they'll be gone in 6-8 hours. He doesn't have that reassurance. :(
     
  21. Scrufflet

    Scrufflet Active Member

    572
    104
    43
    I may be off base here but I wonder if a naturopath would help? I've had many problems that regular doctors were not able to solve. If you find a good one who will work cooperatively with a GP and see his problems holistically, there might be some benefit.
     
  22. danceronice

    danceronice Corgi Wrangler

    6,485
    524
    113
    http://www.quackwatch.com/01QuackeryRelatedTopics/Naturopathy/naturopathy.html

    Especially not when liver malfunction appears to be a serious possibility. I would OTOH seriously look at what mysticchic is talking about as that might be a very rare disorder but it certainly does match the symptoms and once they rule out the more common possibilities (gall bladder disorders, cirrohsis, liver cancer, etc.) which they probably have already tested for, it's time to look at rarer possibilities.
     
  23. susan6

    susan6 Well-Known Member

    3,706
    709
    113
    Did he have any kind of surgery before the pain showed up? I've heard nightmare stories about idiotic doctors accidentally leaving items inside a patient during surgery (like sponges or cloths, or even surgical tools), which can apparently cause excruciating pain.
     
  24. Anita18

    Anita18 Well-Known Member

    11,214
    1,039
    113
    As far as I know, no. It just flared up suddenly, after the stress of breaking up with his gf and general work anxiety.

    He might be going back to France soon if doctors here don't find anything. At least he'd be with family and longtime friends, cause we're all he has in the US. :( It seemed, according to my boss, that the repeated tests are to find "the tumor", but seriously, they haven't found anything after months of tests and I'd think that a tumor causing this much pain would be friggin' visible on SOMETHING, you know?

    I did suggest the pancreas divisum to him, and he said they did an ERCP test this morning. No idea what the results of that are. I think the doctors are getting freaked out that they can't find out what it is, and he already doesn't do well with anxiety....:(
     
  25. Allskate

    Allskate Well-Known Member

    8,312
    669
    113
    Maybe there was something visible and they just missed it? That happened to a friend of mine. When she was finally diagnosed with cancer, they looked at scans from over two years before and saw the cancerous tumor in them. They had just missed it. :eek: Or maybe someone missed or misread one of your friend's test results? (I've had that happen. The test result was sitting right on the freaking desk when the doctor wrongly told me it was just stress. :mad:) It might be worth having someone else look at his entire medical record and see if they can figure out what the problem is. Too bad there isn't a real Dr. House. Maybe it isn't even something that is very difficult to treat.

    I'm so sorry for you and your friend, but I'm glad he has you and your other co-workers there for him. Pain is difficult to deal with, and not knowing what is causing it can be frustrating and stressful. :(
     
  26. AragornElessar

    AragornElessar Well-Known Member

    5,302
    392
    83
    First off...((((mysticchic))))

    Second, that first post Anita, I felt I was reading what I've been going through the last ten years.

    Yes, you read that right. Ten years.

    However, we have a very good idea of where my problems come from, as ten years ago I had my gallbladder out. Sadly for me we learned too late, after he took out my gallbladder, I couldn't have picked a worse Surgeon in our area to do it and...

    All of my Pain issues started a year after this was done and have only gotten worse as the years have gone on. It started as bouts just every so often, but now it's the Grace Periods that are every so often. Now when things get hellishly awful, not only is there pain that has me folded in half, but I'm also tasting bile and you know how Dr. Oz is always saying check the colour of what's in the toilet bowl? Well when things get really bad these days, number two is greyish white. I'm also now pretty much constantly bloated all the time.

    However, all of the tests over the last ten years have shown nothing's wrong. At least, according to the Doctors. Actually, I should say according to the Specialists, as my Family Doctor's just as frustrated as me over all of this. We knew about the partial obstruction about a year or two into all of this thanks to X Rays during one of my many ER visits. That's only my Family Doctor though because when there is something found by the Specialists, the report ends up saying nothing's wrong.

    Sedation doesn't work on me anymore, or if it does it doesn't work for the entire time it would on a regular person, so my last Colonoscopy I had here at home, I was wide awake for. Because, of course, *their* Sedation would work...:rolleyes: Which in turn when she got to the partial obstruction and couldn't get the scope through, although she certainly tried to force the thing through, I had the unpleasant experience of feeling the entire thing. Since she couldn't go any further she ended the scope there and then.

    While that was a special Hell all it's own, at least I had the solace of thinking that I finally had proof beyond the shadow of a doubt something really is wrong. Anyone want to take a wild guess at what the report said? Completely normal and that my entire large bowel had not only been completely scoped, but no evidence of any form of obstruction showed itself.

    I'm also a Kidney Transplant Patient w/a rare Bone Disease (actually a rare form of Dwarfism, but only learned that the last two years, as it's *so* rare there's next to nothing on line about it) and it never seems to fail. Oh, they'd *love* to do more, but they just don't want to harm the transplant. Doesn't matter my kidney's down on the left hand side and all of my pain's on the upper right, but that's the excuse they use. Saw a Specialist in Ottawa a year ago and for the first time in this battle, they used my Bone Disease as the excuse to why they didn't want to have anything to do w/me. [sarcasm]My personal favourite from that waste of time trip though?[/sarcasm]

    When I told first the Fellow and then the actual Gastro Chief that now when things get really bad I'm tasting bile, know what I was told? That everyone makes bile and it's perfectly normal. Having it, yes. Tasting it though? I don't think so.

    That's not the worst thing I've heard come out of a Specialist's mouth during all of this though. Oh no...That was at the beginning when we thought this might be Ob/Gyn related in someway and I was sent to a woman Ob/Gyn in Sault Ste Marie who is a Past President of the Cdn Association. The thinking being since she was so prestigous... She maybe considered that due to her creditatals, but after she informed me she didn't think it was Ob/Gyn related, she continued on w/...

    "I don't understand why you're so upset about all of this. As a Genetic Misfit, you know how the Medical World works and you should know all too well you'll never find anyone to help you."

    For someone who was told she was a Freak, and more than once, everyday by the kids at School and all through my School years, I leave it to your imaginations what hearing that from this Doctor made me feel.

    Right now, I'm going through yet another round of tests by a Surgeon in our area in the hopes he might just help me in some manner. Had yet another Abdominal CT Scan this afternoon and yet another Colonoscopy booked for May 14th. However, I told him in no uncertain words the only reason that was going to be booked was only if I was put out completely *and* had that in writing.

    When I got the date and various papers to bring along for it a couple of weeks ago, there in the upper corner was a message that an Anestist would be there and providing my "sedation". I'll have to have a bit of a chat w/him or her though to ensure I don't have a repeat of all but one of the five I've had during all of this.

    That one and only time, was also the one and only time I had an Anestist there in the room making sure I stayed comfortable and a good thing too as sure enough, halfway through the thing the sedation wore off. That was also my very first scope of any kind, so I foolishly thought that was how they were all done. Should have known better. :(

    I overheard the nurses setting up the machine for my scan and what I'm having to deal w/was called "Abdominal *Discomfort*". I don't call having such Hellish pain that I have to take both of two of the most powerful painkillers you can get in pill form twice a day, along w/Tylenol w/Codeine just so I can simply sit or stand up straight. I don't even have that though after the latest bad bout and also after this last really bad episode, I now have no appetite and when I do eat, it's can't be a whole lot as I feel stuffed on just a very few items of food.

    Just what I need as a Type 2 Diabetic, huh?

    So I completely and totally have my heart going out to your friend. I'm happy he's made such friends at his workplace like you, your boss and the person looking after his dog. :) As long as you've got people who love and care about you during something such as this, then you've at least don't have to worry about being alone.

    I can't think of much more to add that hasn't been suggested here already. The one really important thing I can think of is to simply follow his lead. If he's in such agony talking's not exactly wanted, then say that's okay and just be there. W/myself during the tough times over the years, I always knew I had a *real* friend visiting me or calling in when they paid attention to not only what I was saying, but also other cues and respected them.

    It sounds to me though that you're already doing all you can to help him out. Just being there for him right now and supporting him through it all is exactly what he needs from his friends right now. He's lucky to have you and I really hope they're able to figure out what's going on w/him. ((((HUGS))))
     
    WindSpirit and (deleted member) like this.
  27. Anita18

    Anita18 Well-Known Member

    11,214
    1,039
    113
    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 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. :(
     
  28. Japanfan

    Japanfan Well-Known Member

    13,003
    1,801
    113
    {{{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?
     
  29. skatesindreams

    skatesindreams Well-Known Member

    14,601
    2,482
    113
    ((((((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.
     
  30. victoriajh

    victoriajh Well-Known Member

    2,128
    210
    63
    This!
    Wow I am so sorry to hear of your health challenges .... You are quite an inspiration !!