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Why is chronic pain considered a character flaw?

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  • #16
    My heart goes out to you Lori. As a 22 year Military wife, I can only be blunt. Military Doctors for the majority are totally inapt. Go see a real Doctor. I could write horror stories about the Military Doctors I had to deal with but won't. Enough to say I understand and I would not take my dog to receive help from them. Good Luck, Ziggy

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    • #17
      I don't have enough time to read all the other replies, so forgive me if I repeat anything others have said.

      For one thing, I think it is view this way b/c until you live it, you don't "get it". For doctors who have achy feet all day b/c they are on them, they know not of the pain you speak off. I bet, however, if a doctor suffered from severe prostatitis, he'd be more empathetic to your pain.

      Unfortunately, I believe a lot of the "it's all in your head" thinking comes from the gender that has another body part that does the thinking 90% of the time. They have no clue what women go through on a monthly basis. If they think mid-life is tough, I wish they'd go one month with the ups and downs and hormone changes, and cramps, and bleeding, etc. etc. They'd shut it right up.

      Since 90% of IC sufferers are women, and probably the same percentage of urologists are men, how would they know? Really, how could they?

      I think at this point for the sake of your health, physical and mental, you see a female urologist, if you can find one. Interview her like your life depends on it. Find out if she has one inkling of knowing what it is like to live with constant pain, constant fear, constant searching for a bathroom.

      It is a sad fact that after a while, doctors become hardened, but if you don't become the squeeky wheel with them and advocate for yourself and the best treatment, they won't come through for you.

      Add to that the military doctor thing. It's like a double whammy of fly by night care. I liken it to going to a doc in the box place. All they want to do is get you out! They treat symptoms, not causes.

      And if we compare this to say, cancer. Treatment is focused on symptoms, even in some places, prescriptions to smoke pot for it, AND focused on curing.

      The magic word "curing" is lost on us with IC. They don't see hope for it, and though we may, it's a long way off for doctors to cure us. We must cure ourselves for now, and continue to force them to help with the symptoms.

      Let them keep assaulting their bladders with coffee, green tea, spicy foods, acai and mangosteen juices, etc. Notice how lately, those things are all the rage? And the new excuses to eat chocolate??? Well, I foresee an increase in IC cases as our diets go increasingly toward acidic and bladder assaulting.

      I do hope you get some good news and that you find a treatment that balances out all of your concerns.
      Sonja

      Dx: Idiopathic Dilated Cardiomyopathy/Congestive Heart Failure-1997, Vulvar Vestibulitis-2006, IC-Feb 2007, Atrophic Vaginitis 08, Heavy Long and Painful Periods leading to Partial Hysterectomy-2007, Rectal Fissure-2007, Pelvic Floor Dysfuntion-2008, Post-Menopausal-2010

      Meds: Coreg, Elmiron, Elestrin, Est/Test Topical Gel, Valium Suppositories, Lyrica, Dyrenium to counteract edema from Lyrica, Pain Meds.

      IC Diet: Very diet sensitive, esp. to spices.

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      • #18
        Thank you, everyone. I've decided to take my urogyn up on the offer of a pre-sacral neurectomy. There are some risks involved with this procedure, so I was really afraid to do it, but I've just kind of reached a level of frustration with the doctors and the system, that I'm willing to take a chance now.

        I'm trying to get an appointment with my urogyn as we speak. Left a message yesterday afternoon, left another message this morning, have yet to get a call-back.

        Blessings,
        Lori

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        • #19
          Lori,
          I don't know anything about this type of procedure in humans but I used to be a horse owner and they would do "neurectomies" on some type of chronically lames horses. Sometimes "neuromas" could occur with the denerving and cause the pain to come back. This might be something you will want to ask your doctor about.

          Good luck to you, sweetie. I hope they will finally find something that will help you.
          hugs,
          Janie

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          • #20
            :woohoo: Your an inspiration for all of us

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            • #21
              ICLori

              Yes, it really does suck that there are some idiots out there that are practicing medicine.

              I think I shared here before? But, the last uro I had actually ask me "Do you know how to kill someone? I know that tylynol(sp) actually does something to the recepters in the liver, So, that was my reply, Tylynol? He said yes, someone you don't like you can just fix them up a bowl of soup made of Tylynol. I actully believe he was trying to tell me how to end it all. ???????My husband was with me and we were both shocked. My husband really tore into him too. In my old career, I have heard many, many, many weird things, but let me tell you, he left me speechless. That was the last time I saw him.


              And yes, I have learned from Annie form Dayton that yes, The IC pain is visreal pain that is directly related to our emotions. That's why we can get crazy when we are in pain.

              I am so blessed, I have a wonderful Dr. now in Cincinnati, who when I go in crying or he knows that I've been having a ruff time. I tell him, well doc, I had to have a break-down, he just says to me, Yes, we have to do that sometimes.

              He knows the pain and agony of what we go through. He recently shared with me that he has cancer of the prostate and has been in remission for a few years, So he knows! I think even if he hadn't gone through a lot himself, He still would be empathetic to IC needs.......I have to believe that there are "still" drs. out there that care for their patients. I'm saying this to myself as well, My dr. is getting older and I think retirement is not far away.

              Lori, you are a very, very courageous ( I suck at spelling, brain fog gets in the way) woman, That has been there for many of us, without even knowing it. Congrats on your award, Much, Much deserved!:woohoo: :woohoo: :woohoo:

              God Bless,
              MARY


              Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

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              • #22
                This is a great post. When I went to my wonderful Dr. Ragi for several years, she suggested that I see a therapist simply to have someone to talk to. Of course I broke out in tears thinking that I was crazy, but she assured me that it was only suggested isince chronic pain does cause so many emotions that are hard to deal with. She certainly kept me as painfree as possible and was always there to answer questions. I do have to admit that I never went to a therapist just because I was already paying so many co-pays with my bladder, skin and hairloss issues. She put me on Zoloft and I seemed to deal better with my emotions, but there are still times that I lash out on my sweet hubby or my younger son (he was still in highschool at the time) over such simple issues. I would always feel so bad, but also so out of control of my own feelings.

                In this thread I read something about Ultram causing a "high" effect. I took Ultram for awhile, mostly during the day since my pain was worse at night. My husband was given Ultram one time when he had Shingles and he would be out like a light. When I took it, I never felt a "high" nor did I really have pain relief. The only time would be if I took it right when my pain was starting and it would kind of stop the cycle. I have been on Lortab for so long. I am talking years. It seems to be the only pain med that works on me. When I tried Percoset, that is when I felt as high as a kite and hated the feeling. I was also so aggitated. The doctor that took my favorite doctor's place put me on Morphine once a day. She assured me that it would be effective all day. After the first couple of days, I would have breakthrough pain and didn't have anything to take during the day. I called her office and she had the nerve to tell me that I wasn't really having pain, I was just used to taking meds during the day and my body would learn to adapt to the long acting meds. She suggested that I take an Advil for my pain during the day. If Advil would worked, I wouldn't have needed to call her! I went in for my next appointment and had my pain journal with me and tried my best to effectively make her understand my pain. She wrote up another prescription and there again was Morphine once a day. I asked her if she could reprogram my interstim implant and she looked at me with the strangest look and said "you have an interstim implant". When I said yes since 2002. It's in my folder. I wanted to make a nasty remark about her not reading my former doctor's notes, but I bit my tongue. She said that she didn't work with implants. When I got home, I googled her and saw her credentials which didn't even include IC. Shortly after that I emailed Dr. Ragi and she sent me to another doctor. I read a post on this thread about their pain being worse at night. That is definitely my problem as well. There are days that I can go all day long without a pain pill or just need to take a half of a Lortab.

                In reading so many people's horrible stories about living in pain and not having the proper medical care makes me so mad. I have been lucky for the most part with my doctors, but I still have issues with their nurses. Especially my current doctor's nurse. I have never been made to feel like a "drug" seeker until I have talked to her on the phone. She is nice when I am in the office, but not sympathic at all when I am in a flare and running low on my pain meds.

                Tracey

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                • #23
                  Oh Lori, I hear you so well!!! I can't seem to tolerate any of the pain meds because the chemicals end up hurting my bladder more when they wear off. So the doctors look at me as a difficult case, and I fear losing my doctor because of it, and just take the prescription and go home knowing full well if I try it I might be in worse agony. You become afraid to complain too much for fear of being misunderstood. A doctor should keep trying different solutions for pain until something works. Letting a person suffer needlessly is inhumane. IC when flaring can be likened to torture. Doctors need to take courses and learn about these issues.

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                  • #24
                    Congtrats

                    Lori,

                    Congrats on the Courage award!!!!!! You've always deserved this type of award. I am sorry I did not relpy sooner, I've been away. What is a pre-sacral neurectomy?

                    How incredibly interesting!!!

                    I am so happy for your award!

                    Love and Hugs,

                    Kara
                    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                    I also have some journals of my journeys, past and some present at:
                    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

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                    • #25
                      Lori, I agree you definitely deserve a courage award. I think the statement you made, "That the stress I am feeling from the PAIN would be felt by any person in untreated pain." You are so right with this statement. The body can only take so much and then starts stressing out. By then we are emotionallly stress out, with little of sleep, with little of energy, and feeling like our whole body and mind in so fatigue to the point that you are just drained.

                      Yes when we can get help with the pain issues our body begins to heal again. You wonderfully wrote this writing and I wish all doctors could understand it. As doctors they should know this already. No one can keep living in severe pain and not be treated properly without it effecting them emotionally.

                      Lori you did a wonderful job saying what most likely each one of us feels too. Thank you, your words gives us comfort too.

                      Sending hugs, Trishann

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                      • #26
                        I have been seeing a great psychiatrist who used to be an internist. He totally understands my medical issues. Last week I told him sometimes I blame myself. He said no way! The problem is that once the ic starts we get anxious, things get worse and then it all gets twisted up and we think that if we weren't anxious we wouldn't have ic.

                        My 10 year old told me to write to Oprah and tell her about my illlnesses (ic and Postural orthostatic tachycardia) and ask her to do a show about them. So I did! I sent her an email telling her that people are suffering with all kinds of little known litte understood illlnesses and we need her to bring some attention to them. It's worth a try!

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                        • #27
                          I am a pharmacist and it amazes me how many doctors prescribe drugs like lortab and Ultram for a simple UTI. It angers me because ICers have a difficult time getting pain relief yet a UTI gets a controlled substance. I went all last year in a constant flare and pretty much bedridden because of the unbearable pain. Yet I could not get anything for pain. My uro did not want me to get addicted to them. Luckily though in Feb. 07, he put me in the hospital with a fentanyl epideral for 3 days that broke the pain cycle. And now he asks me if I need anything for pain!!!

                          Janet
                          Dx: IC, endo, IBS, migraines, TMG, allergies, fibro

                          Current meds: Singalair 10 mg daily, Miralax daily, lido/heparin/sodbicab as needed, Vivelle Dot (HRT),prelief, Imitrex as needed, Pyridium Plus as needed, Alprazolam as needed, Tramadol as needed, Levsin s/l as needed, Methadone 5-10mg daily, Zyrtec daily

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                          • #28
                            I sympathize will your pain stories. The first few times I went to a urologist about ic I couldn't help bursting into tears - I was, and still am, in so much pain all the time. Does that make me a "hysterical" women? Just because I cried instead of getting angry and forceful (like a lot of men would do) I feel he didn't take me seriously. I found a different, way better, urologist now.

                            It's taken about 8 months to get to a point where the woman I share my office with has actually "gotten it" about my illness and what I'm going through. (I honestly don't know how I make it to work most days.) And even then I think that's largely to do with the fact that I recently got a cane. (I'm healing from my bladder distention and found it helped me walk). I don't think even my own family "gets it". Thank god for my husband and a couple really good friends.

                            One of the more frustrating things about IC is we don't 'look' sick. I found ever since getting a cane people, especially at work, are all of a sudden WAY more sympathetic and don't look at me like I'm making it up. *** - Do I have to walk around with a big bandage around my head for people to take me seriously?

                            On a positive note there is a lot of research being done on pain. When I was doing my psychology degree (6 years ago now) I kept hearing about different research being starting up and more and more studies are being made available to the public. We are just beginning to know how pain works. The same can be said for IC.

                            I now have so much more understanding for people with disabilities/illness, mental and physical, but it took this horrendous experience for me to open my eyes a little. People, especially doctors, should be educated on the toll chronic disabilities/pain take on some one's life.
                            - Diagnosed Oct 2007
                            - Dextroamphetamine has improved my symptoms and given me more energy
                            - Prelief allow me to have some bad foods, but I follow the diet as much as possible
                            - Physio for pelvic floor dysfunction has helped a little
                            - Bladder distention Jan 2008 made me worse
                            - Elmiron didn't help after 9 months
                            - very slow improvement of symptoms, still in pain every day.

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                            • #29
                              Amen to that!!!

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                              • #30
                                People are just such j***s some times. There are lots of illnesses that don't "show."

                                I have a friend with MS, a guy who's about 35, and people actually have the nerve to say something to him about parking in a handicapped space. He walks with a cane and can't feel his feet at all. People have made comments about him being drunk in public because he walks poorly.

                                When I was hyperthyroid, my hands shook so badly, someone made a comment about me coming off of drugs!

                                On the Ultram topic, my dad takes this 3 per day and the dr. said that was fine, he wouldn't get addicted. He doesn't get any high from it, just tired. That is all they gave him for stress fractures in his hip. He has to get a replacement, but they can't do it until the fractures heal and the dr. said just stay off it. How does one stay off a hip? I had to say "Isn't there something you can give him for the 6 MONTHS of pain he has to endure until it heals?!" Anyway, we have it bad in the bathroom, but he can't stand long enough to pee, so has to sit on his bed and pee in a bucket. It's a good thing he's male and can do that.

                                Obviously any of these things is enough to make a person loose it. It's not being crazy it's being HUMAN. I think the drs. just think we're all specimins.

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