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  • Here's my story (Chronic Pain, Endo, Migraines, etc.)

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    Old 03-25-2012, 06:39 PM   #1
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    Here's my story (Chronic Pain, Endo, Migraines, etc.)

    I'm posting in hopes that someone can offer some insight on my pain issues and ways to improve my quality of life. Here's my story:

    I have more than one pain problem. My worst problem was migraines that seemed to have a hormonal link in my personal opinion. I've also had fibroids and endometriosis along with back pain and neck pain. I've had injections done for my back and also for my neck. I started having major issues with fibroids and pain so I had a hysterectomy.

    Some of the pain got better but something else happened and I could barely stand up straight without feeling like a bowling ball was in my pelvic area. My body was producing large cysts which warranted another surgery and finally another surgery with the removal of my ovaries and Stage IV endometriosis. It had attached to my bladder, bowels, appendix, and other areas. The surgery was a very complicated surgery and the bowling ball feeling got better.

    However, I've been in so much pain that I can't think straight half the time and I'm wondering if something else is going on that is going to kill me. I can't walk around much without the bowling ball feeling coming back in my lower belly and pelvic area, I have a lot of lower back pain, and add in good old migraines and I'm miserable.

    I've been a pain patient for over 10 years and have been on various pain medications as well as seizure medications and other types of medications to treat my different illnesses.

    I've been feeling like there's no hope for me lately because I know that my last surgery was really complicated and I don't think that I can endure more surgeries on my abdomen. I'm also getting more uncomfortable about taking medications. I don't take more than prescribed or anything like that, I just get nervous when I hear about people getting hooked on drugs or dying.

    I also want to live a long life and be around for my children and I wonder with each pill that I take if I'm decreasing the length of my life. I've thought about stopping all medication but I know this isn't the answer as I'm not living now.

    I guess I need reassurance that there are older people who have been on pain medication for a long period of time. Also do I have any options for the abdominal pain that I have, I'm pretty sure that it is coming from either adhesions or endometriosis that was left behind. I can't describe to you how bad the pain is and how much it has affected my life. Of course I'm going through changes mood wise because of surgical menopause. I feel like I'm 100 years old. Please help.

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    Old 04-01-2012, 10:11 AM   #2
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    Re: Here's my story (Chronic Pain, Endo, Migraines, etc.)

    Sorry to read you are in so much pain. I've had daily constant pain for just over 6 years now so I can relate a bit. Whenever I hit a blockade with my current/doctors treatments, I find its time to look for a new doctor or path. My condition isn't treatable by surgery, but most conditions do have several different paths to treatment to take, between meds, alternative (pt, massage, exercise/water therapy, chiro, acupuncture, hypnosis, biofeedback, etc), injections, surgery, nerve stimulator, pain pump, etc. I would be looking for a new doctor with a fresh outlook.

    Its often good to essentially start over...go from the beginning and figure out what you haven't tried. Often just a slight med increase, med change, or dosing interval change can be very helpful. It took me over a year to find a new pain doctor who would be more helpful (ie. didn't object to dose increases), but I finally did. Look online at review, ask your various other doctors who they recommend, visit your insurance website to see what doctors are in network, etc.

    I can't give you specific advice about your conditions as unfortunately I'm not familiar with them, but you may need new specialists in those areas in addition to a pain specialist. I can tell you that less than 5% of chronic pain patients on narcotics develop a psychological addition to their meds. Physical dependence is to be expected. I would not worry about addiction as if you have those tendencies, you would already know. There are treatments available for pain that can turn your life around, so no reason not to pursue them.

    With pain that is expected to be continuous and likely lifetime, what will happen when you get off of the meds shouldn't be consuming your thoughts. Worst case you may need some inpatient support to taper off, but quite a few people can do it on their own with a long taper and some Clondine or whatever helps the withdrawal symptoms. Narcotics are not something that will decrease your lifespan or even harm your liver. That is a common misconception.

    If anything, taking high quantities of narcotics containing Tylenol could be an issue, but most doctors are smarting up about that and not prescribing Vicodin, Percocet, etc, to chronic pain patients (or at least not a handful of them a day). Do some research to ease your concerns. Narcotics can safely be used very long term. There is no dose ceiling, although some doctors just don't have a comfort level prescribing large amounts to tolerant patients. A good doctor will also take the time to answer your questions. Untreated severe chronic pain is more likely to shorten your lifespan than taking narcotics is--hang in there! Best wishes.

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    DiamondDiva (04-02-2012)
    Old 04-02-2012, 12:55 PM   #3
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    Re: Here's my story (Chronic Pain, Endo, Migraines, etc.)

    Thanks for your response. I think with migraines, I've come to a realization that I have them and they may be a part of the rest of my life and I've stopped searching for the Holy Grail so to speak and felt more at peace with that decision. I don't want to be a guinea pig and as I age, I don't tolerate surgery, pain, or a lot of medicine as well as I did before.

    I've had bad experiences with medicine lately so I'm not as willing to ingest anything and pray that it works or doesn't make me really sick. This may be a phase and a result of all that my body has been through lately surgery wise and hormonally. As far as the other conditions go, the problems that they are presenting are new to me in the severity and it seems that there are no cures for them as well. My research shows that women are either suffering or having surgery every half year or year and I don't think I can handle that (not being cut open).

    I'm going to try diet changes and getting exercise to see if that helps with endometriosis and go from there. It's a start.

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