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Looking for info., stories, help, ANYTHING, re: chronic abdominal pain and other things

So I'm posting on behalf of my wife who is okay with me doing do. I'm just trying to gather information, ideas, support, really anything that may help us through this. I wish she would do this, but unfortunately she has no motivation to do so.

Seems my wife has always been accident prone. She is 29 now, but I can't tell you how many times she has been in the hospital and ER in her childhood and how many pairs of crutches and braces and things she has had. She also found out at 10-years-old that she has a high tolerance for pain medications and a low tolerance for pain when she dislocated a toe and the doctors had to keep giving her more and more Vicodin as it just wasn't having an effect on her.

This was her life until she turned 21, occasional accident, but besides a major car crash when she 17, nothing significant. When she was 21, after having several mis-carriages with her first husband, her baby had to be delivered by emergency c-section due to her having severe preeclampsia. This, it seems, is when things started going bad, or at least when symptoms started showing up. After the c-section, when things should have been all healed up, she started experiencing bad abdominal pain. After many tests and a lot of pain and ovarian cysts, it was finally diagnosed as endometriosis by a laparotomy. At the time, she wasn't married and didn't have good insurance. Unfortunately, she had a doctor who was willing to prescribe for her opiate pain medication by the hundreds every month, and as this was the only thing that proved to take the pain away, she was willing to take them. Needless to say, she became addicted to them.

When she lost this doctor, she came across a slew of doctors who wanted to tell her there was nothing wrong with her and refused to help. This caused her to rely on the ER for pain meds when the pain got bad. But of course that led to a different doctor every time, and sometimes they refused to help. So this led to using different hospitals and different pharmacies. And after a while it looked like she was doctor shopping. And honestly she was, shopping for a doctor who would actually help. It got to the point where some nights when the pain got so bad, she would be in-and-out of multiple ERs during the night, just to try and find some help. I'm sure there are some here who can relate.

We've been married almost 2 years, and I was able to get her decent health insurance since. I got her into an OB/GYN who is also an expert in endometriosis removal and she had an operation for it's removal a year ago. Thinking that was the the majority of the abdominal pain, we were hopeful that would allow her to take control of her life again. She ended up having more abdominal pain after the surgery then she had before. This OB/GYN, early on in the process, sent her to see a pain management colleague of his, since he wasn't able to control the pain sufficiently with what he felt comfortable prescribing her. This pain management doctor has been taking care of all of her meds since.

Once the pain after surgery didn't subside and nothing else seemed to work, the PM doctor decided she would be a good candidate for an intrathecal drug pump. She now has had this Medtronic pump since December, but yet again has more pain since the surgery and this pump is only providing minimal help. The doctor is now thinking she may also be a good candidate for a neurostimulator, but we are all kind of leery of having any more procedures done. Since that pump implantation, she has spent most of her time in bed as the meds make her too tired to get up and the pain makes it unbearable. This has caused muscle loss and weight gain, none of which help anything.

She's also been diagnosed with fibromyalgia, has bad insomnia, and a combination of everything is taking a toll on her mental health. She is on Lyrica, OxyCodone, Risperdal, Xanax, fentanyl patches, scopolamine patches, takes Natural Calm for the muscle spasms, as well as other meds.

Not sure what I'm looking for here, except maybe some ideas of where to go with all this or what to try, or even if anyone has experienced anything similar.



  • sandisandi Posts: 6,343
    edited 08/18/2014 - 7:17 AM
    Please, don't take offense to what I am going to suggest, but with an extensive history of pain medication use and misuse, doctor shopping, injuries going back to childhood etc, it may be that part of your wife's inability to control pain and her injuries is psychological in nature and may be addiction based as well.
    While she may in fact, have pain originating from some physical problem, there is also the possibility that her pain feeds an emotional need as well and has led to lots of attention from doctors, hospitals, her family, and needs to be addressed.
    It would be wise for her to seek mental health support, and I am not implying that she is crazy or anything of the sort but given her extensive history with injury, not responding to proper treatment, including a pain pump, her abnormal response to surgeries, and pain treatment even at significant doses, it would be smart to explore the possibility that some of this may be psychological in nature.
    If the psychiatrist and psychologist don't feel that it is in part based in some emotional needs, then you know going forward that you need to keep pursuing the physical aspects .
    In the meantime, I would put off having anything else done surgically, until you are sure that there is or isn't something medical going on.
    A spinal cord stimulator is used to treat neuropathic pain in the spine, not sure why the doctor is suggesting one for gyn related pain?
    If she has a pain pump, why is she still taking so much in the way of oral or transdermal pain medication in addition to what's in her pump? The amount of medication may be a large part of her over sedation and may in fact be causing the abdominal pain since opiates slow down the gi tract and can cause intestinal blockage if not treated.
    Laying in bed, is not helping her, and if she is overtly sleepy ( drowsy and can not wake up or stay awake, that is a sign of overmedication), and you need to discuss that with her doctors.
    The purpose of the pump is to replace the need for oral medications for pain, with the occassional use of a breakthrough medication by mouth or delivery of extra medication through the pump in some instances. Is her pump doctor aware of the additional use of the fentanyl and other pain medications?
  • Hello,

    I am so sorry that you and your wife are going through this. She is not going to want to hear or accept this advise but -
    I agree with Sandi 100%. Your wife is so young. She does not want to go down the path she is on. I cannot believe how much pain medication she is taking. I cannot believe she has a doctor willing to prescribe this much medication. For endometriosis? This much medication alone will cause a person to have pain and disability. It is extremely constipating. She could be having Liver pain from damage to her Liver and internal organs from this much medication. Less is more in this area.

    Too much medication can cause extreme abdominal pain. I am 45 and am opioid/ opiate tolerant from having to take Lortab
    a few times a month for severe debilitating migraine headaches since the age of 16, but I now have severe injuries and I go to pain management and I take 30mg MS Contin twice a day and 15mg once a day. This has been enough medication to provide significant relief for numerous severe injuries for 6 years. No increase has been needed.

    I cannot relate to going to numerous E.R and doctors to get pain medication. I have chronic pain and that would be just too much for me. I can barely make it to my pain doctor once every two months. I don't know about others but I think those that are in this much pain would just stay home as we are too sick to even do that. That alone leads me to believe it is a psychological need that is driving her behavior.

    I also have endometriosis and don't even remember to include that in my list of diagnosis because it is that insignificant in comparison to these other conditions. Also- endometriosis should only cause pain/disability once a month. How did she get a pain pump? I can barely get the pain medication I receive and have way worse problems. I don't get it.

    I am sorry. I know you and your wife don't want to hear this but I think she needs to get into an addiction treatment program right away. I know she is suffering but the pain medication and withdrawl is the cause. Endometriosis can be fixed surgically.
    She is too young to be disabled by this much medication. She does not want to be on strong opiate medication every day until she absolutely has to be. It really is not fun or enjoyable. Please get her help for addiction. From what you say- this is the problem here. I wish you both the best. Please tell her that she can get her life back at this point.
    God Bless all of us who are suffering with chronic pain and chronic health conditions.
    With Love and compassion,
  • Thank you for the responses, I don't take offense to any of it and I do appreciate it. I probably should have been more clear about the psychological aspect of it as well. As one can imagine, continuously getting beat down by your body can have an emotional effect. My wife has been seeing a psychologist since having the drug pump implanted in December. He works with the pain management doctor and shares an office with him, so they keep each other aware of what is going on. We are also aware that this is one thing that needs to be explored more.

    Her pain management doctor is the one that prescribes all of her medications, transdermal, oral, and intrathecal. He is slowly working on weening her off of the oral pain medications so she can rely solely on the pump. He has already reduced her oral and transdermal considerably and is continuing to do this, but it is a slow process as he is also trying different meds in the pump to see what works best for my wife. He also thinks that she is so sleepy and withdrawn because of the meds and that is another reason for reducing them.

    She did have the endometriosis removed surgically a year ago and the doctor, who has done the same procedure thousands of times, is confident that he got all of it and there is nothing else abnormal that should be causing the pain. The endo, combined with ovarian cysts, was causing her constant abdominal pain, not just monthly. Some of the cysts had to be removed surgically, others that showed up on ultrasound eventually ruptured. I know that there are physical symptoms causing her pain, but do not doubt that there is a psychological aspect to it as well.

  • Has she ever had an MRI on her lumbar spine? The reason I ask is that I had unexplained lower right abdominal pain that was intermittent but was sometimes quite severe that I had been dealing with for three years. They could not find a reason for it - I had ultrasound after ultrasound, I had been scoped from one end to the other - nothing. That issue was put on the back burner while I dealt with my massive disk herniation and eventual microdiscectomy surgery. Since my surgery the abdominal pain disappeared. I have not felt it at all. I don't know if the two were linked as I have no idea if the nerves were connected in any way or not, but just throwing that idea out there.

  • EmeraldEEmerald Posts: 23
    edited 08/19/2014 - 8:15 AM
    I am sure glad that you did not take offense to anything I said. I really am trying to help.

    I re-read what you wrote and I did not pick up on the part where she does have fibromyalgia. Some people can have chronic pain or fibromyalgia without any injury that a doctor can see. I have one of those doctors who does not "believe" in fibromyalgia. He prefers the term Chronic Pain. Fibromyalgia is a word that literally means - Muscle Pain. So I imagine the diagnosis are very similar. My diagnosis is Chronic Pain but I completely relate to those who have a diagnosis of Fibromyalgia.

    I do understand that there are severe problems that come along with this. Being so debilitated all the time is so exhausting and it causes severe major depression. It is hard to adjust to all these limitations, I tell you. It is.

    I am not suggesting that she does not need any narcotic pain medication, especially after being on so much pain medication for so long. I just think that she would feel a lot better if she could get rid of those patches and get down to a level that manages the pain but still allows her to have some quality of life. Management is the key word. That means you are always in some pain and there are times where the pain level goes up for awhile but once you get to a "managed" level of pain control then you have some stability back in your life. You don't get these huge up's and down's, well, not as much and not as severe.

    I am glad to hear that they are working on getting her medication straightened out. I went through that for years- trying to find the right combination of medications for that person (everyone is different). I can tell you that I found it was just a slow torture to "wean" off the medication. My pain doctor just cold turkey me off the Valium and anti-depressants and yeah it sucked and I felt like crap but it was over with in a week. For me, I would rather get it over with. The slow torture sucks but she may be at a level that must be done. Just a thought.

    I found that a lot of those medications had major side effects. It is hard to tell what is side effects. She is lucky to have you to advocate for her and to moniter what is helping her and what is not. I am sure you are picking up on her behavior's. You always need to listen to what she says helps and does not help too. I never judge anyone. If that works for you then I say great. But it sure would have been helpful when I was going through trying all those medications to have someone tell me -
    I noticed that medication causes you to do this or that- you know what I mean?

    For me- and everyone is different- but I tried so many different medications and combinations of medications so I have some experience here- what has worked really well for me is MS Contin 30 mg twice a day and 15 mg once a day for pain and Ambian 10mg for sleep.
    I had to add clonazepam 1mg at bedtime for REM Sleep Behavior Disorder and night seizures but I did not want to. After coming off of 3 10 mg Valium a day, I was off Benzo's and did not want to go back but seizures and no sleep are worse.
    You have to weigh the pro's and con's.
    I tried to take the least amount of medication to control the pain as possible (told the doctor no to any break-through med's) and it takes awhile to get that pain control and stability built up. But once you have "pain management" it is so much better.

    I feel so bad for both you guys. It is something that takes a toll on any relationship. Especially in that stage where you are jacked on other medication and trying to find that right combination that works for you. Most people run. : ) your a good dude.

    You always need to keep in mind that sooner or later, your going to become tolerant to the medication and need an increase in dosage so you need to go as long as you can and increase as little as possible or there will come a day that nothing helps and you are just left screaming in pain and have to detox off the medication on top of it. You want to avoid that like the plague.

    I sure hope that the doctors can get your wife to a stable, managed level soon. I know she may not feel like talking right now because she is just too unstable and scared but when she gets to a managed, stable level and feels up to it- please tell her that there are many who do understand and who are also living with chronic pain and chronic conditions. I would love to give her some support. It really helps to be able to talk about it and see what others are doing or just freak out about it where nobody is going to judge you at all because they have the same deal and understand.

    I wish you both lots of luck. I will keep you in my prayers.
    I send you both lots of love,

    God Bless all of us who are suffering with chronic pain and chronic health conditions.
    With Love and compassion,
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