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Chronic Pain A new forum for chronic pain sufferers, including migraines.

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  #1  
Old 22nd December 2011, 03:12 AM
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Sad Newbie here, waaay past ready to give up

Yep, new to the forum, but not to this life of suffering. Have had some form of IBS since I was a child, but in 2000 when I turned 40, the cramping pain in my intestines began to take over my life. I was diagnosed with the new and improved version of non-diarrhea, non-constipation IBS, "Chronic Functional Abdominal Disorder". What that really means is the doc no longer knows how to help me. Spent the middle of the 2000's taking doctor prescribed narcotics, which, I subsequently became addicted to, of course. Naturally, they froze up my intestines and I could no longer digest food. In 2007, I lost at least 50 pounds and nearly lost my life until the docs pulled me off the narcotics. From 2007 to early 2011, I had somewhat of remission when the intestinal pain was tolerable. In April of 2011, the other shoe dropped and it all came back, except this time, I knew I couldn't take narcotics because of what happened last time. Doc has been prescribing the typical anti-depressants, have been on Cymbalta for at least five years, take Buspar for anxiety and tried amytriptiline but came off of it when it didn't do a thing. I am mother to four adult kids and grandma to seven beautiful grandkids, but it's hard for me to enjoy them. I wake up every morning with sharp intestinal cramping and follows me throughout the day no matter what I do. The depression is the lowest it's ever been and I've been having suicidal thoughts. My last child moved off to college this fall, sending me into a tailspin. Not quite sure what my purpose in life is anymore. My kids are raised, they grandkids are doing fine, my husband is great but would be fine if I died, which is what I want to do.
Pain, depression, listlessness every day, every day, every day...I hate it. Maybe this time it really will kill me this time and I do not care. What am I here for now, just to sit here and suffer? Have tried praying, reading my Bible, etc, doesn't help. No one around me understands chronic pain, especially my family. I think they'd be better off without having to be bothered by a mother who spends most days curled up on the couch not wanting to leave the house, which they don't like.
Okay, this is really too long, please forgive. I just do NOT want to do this anymore, seems that once you finish raising your kids, you're just sitting around watching your body deteriorate and suffering until then, you die. Can't bear the thought of living any more decades like this! What do I do? I mean really, what do I do?????!!!

Lori,
hopeless, depressed and in pain in Colorado
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  #2  
Old 26th December 2011, 10:21 PM
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Hi Lori! Welcome.

Hi Lori,

I also am in your boat. Can't say I understand, cause like me, I am sure noone really knows what the heck is going on in each of our bodies, so how do I know how your feeling ? But circlular logic aside, I have had chronic pain that is debilitating too, with extreme pain in the nether regions, including my intestines.

I really hate it when people offer me advice, but then again, some of my best breakthroughs have come from some chance encounter. So I will offer two queries.

One is that just today, it was announced in the news that Phizer is working on testing a med in Phase 1 here in the USA that is already in Phase 2 in Canada. Because I also cannot take narcotics for the same reason you described, and am also on Cymbalta, I am very excited about this, and think you may be too. It looks very promising. Here is a link to the announcement naming the professor and the college doing the study. I have not contacted them yet, but could share info as I find it?
Powerful new painkiller with no apparent side effects or addictive qualities, may be ready in a year

I am also wondering, has anyone suggested seeing a pelvic floor specialist? I have been misdiagnosed with IBS forever until I raised hell, and the dr.s discovered through a trail of "coincidences" that I had massive scarring in my central cavity that was rearranging my organs into new forms of oragami. None of it showed up on CAT's or ultrasound. After two surgeries, that was cleared out, and my organs were put back in place (releasing my colon that was glued to the back of my uterus at a 45 degree angle. Think that may have been a source of pain??? ) ... several issues occurred post operation that lead my dr. to recommending pelvic floor therapy.

Saw one therapist, not having allot of faith in it, and had a horrible experience. But then my pain dr. strongly insisted I see a PFT by the name of MJ Strauhal, who is world renowned, and happens to have her office at my hospital (Providence St. Vincents in Portland, Oregon). Here is a link to her info:

Physical therapy - Mary J. Strauhal

Through her assistance, my pain has diminished significantly, and the cramping that is affecting my intestines (cramping like Charlie Horse cramping for weeks at a time) she has identified the source. The pain is slowly degreasing through her therapy, my situation is improving a great deal.

Even if those things do not apply, I feel you about not wanting to live. Sometimes my pain is so great that I can't remember what it is like to live without it anymore, when it's day after day, and suicide looks like a pleasant relief. For people like you and I, it is always an option. But I take the perspective that it is an option that I will never loose, so look to exhaust all my other options first.

If you want a friend and need some comfort, validation or distraction, I am here. Your not crazy, the pain is real. You are valued and loved, and your questions about living are valid. Pain does take a toll on family, and it takes a toll on us. However, I cannot underestimate my value to my family. If you are truly too tired to continue, can you involve your family in the discussion? I don't like euthenasia, but in Oregon, we have right to die laws. Before I developed this excrutiating pain, I was very against it. Now, I understand, it can be a merciful choice, but it only works well when the family is involved in the process, so they can have closure with you. In Oregon, this process includes your family, a psychiatrist and your doctor. They must all be in agreement that you are in your right mind and that this is a reasonable option for you. Otherwise, keep in mind, if you end your life and die without involving your family, they may feel betrayed, and you can increase their chances of commiting suicide themselves. I'm not being overdramatic, studies re: suicide within small communities and families show that suicide is contagious. Not sure if you know that?

But enough of that. How are you feeling today? Good or bad, indefinite or precise, I'm here. Nice to meet you Lori. Today I am having a good low pain day. Was able to do some dishes, which for me, is a victory If you want to talk more, you know where to find me.

From Jada

Last edited by jada; 26th December 2011 at 10:39 PM.
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Old 26th December 2011, 10:29 PM
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To Lori again...

Oh, and I forgot to mention, I was born in Colorado!

If you find that you may want to come up here to see MJ, let me know. We have a guest bedroom, and I would be happy to host you, if the timing is good. Or, I have several friends here, and may be able to find someone to host you, so you can arrive and get your land-legs so to speak without having to pay for a hotel. We have 2 cats...

Anyway, thought I would offer.
From Jada
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Old 26th December 2011, 10:30 PM
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Originally Posted by Lorimidwife View Post
Yep, new to the forum, but not to this life of suffering. Have had some form of IBS since I was a child, but in 2000 when I turned 40, the cramping pain in my intestines began to take over my life. I was diagnosed with the new and improved version of non-diarrhea, non-constipation IBS, "Chronic Functional Abdominal Disorder". What that really means is the doc no longer knows how to help me. Spent the middle of the 2000's taking doctor prescribed narcotics, which, I subsequently became addicted to, of course. Naturally, they froze up my intestines and I could no longer digest food. In 2007, I lost at least 50 pounds and nearly lost my life until the docs pulled me off the narcotics. From 2007 to early 2011, I had somewhat of remission when the intestinal pain was tolerable. In April of 2011, the other shoe dropped and it all came back, except this time, I knew I couldn't take narcotics because of what happened last time. Doc has been prescribing the typical anti-depressants, have been on Cymbalta for at least five years, take Buspar for anxiety and tried amytriptiline but came off of it when it didn't do a thing. I am mother to four adult kids and grandma to seven beautiful grandkids, but it's hard for me to enjoy them. I wake up every morning with sharp intestinal cramping and follows me throughout the day no matter what I do. The depression is the lowest it's ever been and I've been having suicidal thoughts. My last child moved off to college this fall, sending me into a tailspin. Not quite sure what my purpose in life is anymore. My kids are raised, they grandkids are doing fine, my husband is great but would be fine if I died, which is what I want to do.
Pain, depression, listlessness every day, every day, every day...I hate it. Maybe this time it really will kill me this time and I do not care. What am I here for now, just to sit here and suffer? Have tried praying, reading my Bible, etc, doesn't help. No one around me understands chronic pain, especially my family. I think they'd be better off without having to be bothered by a mother who spends most days curled up on the couch not wanting to leave the house, which they don't like.
Okay, this is really too long, please forgive. I just do NOT want to do this anymore, seems that once you finish raising your kids, you're just sitting around watching your body deteriorate and suffering until then, you die. Can't bear the thought of living any more decades like this! What do I do? I mean really, what do I do?????!!!

Lori,
hopeless, depressed and in pain in Colorado
have you ever considered alternative medicine, such as special diet, I've heard many peoples testimonies of severe intestinal issues and depression do a complete 180 with a change of diet.......you would be amazed at how some folks bodies react with processed foods, dyes, and manufactured ingredients
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Old 26th December 2011, 11:14 PM
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Hi Lori,

Here are a couple resources you might want to check into for more information, if you haven't already.

American Chronic Pain Association
Find Support

I don't know why it's so difficult for people to understand that chronic pain is real and debilitating for many people. I guess because we can't see it, it's difficult to have mercy on. I do know it's real.

Have you considered seeing a therapist who specializes in chronic pain, to deal with the depression side of things? There is a lot that a therapist can help with on the emotional end of things that might help with the depression side which can impact the physical pain.

I'll be praying for you. I'm so sorry you're going through this.

Kristen
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  #6  
Old 27th December 2011, 05:25 PM
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Hello again! Thank you, Kristen and Jada for your wonderful responses. Just reading a kind, loving response seems to give me a little more hope! Although I am well aware that I'm not alone in this suffering, I don't personally know anyone that that understands chronic pain and how it drastically affects your life!
The holidays were really tough for me, preparing gifts, making food, being with my extremely loved, but honestly noisy large family a few times adds to the stress, anxiety and pain. The hardest part is the fact that I feel I have to take more of the meds I know I shouldn't take (Tramadol) when I'm around them because my adult daughters have already been through almost losing their mother due to pain being treated by narcotics and my subsequent, unfortunate addiction, and they have very little tolerance for any of that returning. I don't blame them, but trying to pretend you're NOT in pain actually causes more pain!
Thank you, Jada, for the link to that new drug! My GI doc has taught me that my intestines do function normally, it's just that somewhere between the intestines and my brain, the signal gets interpreted as pain. That new med sounds like something I might be able to use! I'm going to print out the information and bring it to my doc when I see him on Wednesday!
Also, I do have a therapist who used to work as an RN in a pain management clinic for several years, she's wonderful. She's trying to teach me how to use a type of meditation (she's a Christian as well) to keep calm during high pain levels. I am here to tell you, it takes a LOT of work and I'm not always motivated to do so! I've had this wonderful therapist for six years now, and she's in her 70's, I am NOT looking forward to her retirement!
Since 2000 when I first became aware of increasing pain in my belly, because I am a home birth midwife, I knew about and tried pretty much every form of alternative medicine out there. Chiropractics (LOTS of money in that, didn't help), acupuncture, homeopathics, herbs, yeast free diet, sugar free diets, gluten free diets, lactose free diets and organic food only(I couldn't afford this one for long). None really seemed to help. There are things that can exacerbate the pain, such as alcohol, but not always. The only thing that seems to help at all is a clear liquid diet of broth, but one can't really live on that.
I have been through the pain management doctor route, but he's the one that continued to give me higher and higher doses of narcotics. At the time, he said that was the only treatment out there. Currently, I do not know of any treatments for this type of pain, trying to disrupt the signals the brain perceives as pain, and I do research this frequently.
Currently, I have decided to cut back on the anti-spasmodics I've been taking, because it can make the entire situation worse, which means I have no idea what I'll use for pain. Have to cut back on the Tramadol too, although I only take about two a day, but we all know how our body unfortunately builds a tolerance to pain meds...sure wish it didn't do that! Since Christmas is over, I have not left the house, have been trying to keep my stress levels and anxiety low, which does help. Unfortunately, life does intervene and I do still have to occasionally leave the house. I have dropped a LOT of activities out of my life since this pain recurred in early 2011. Thank God I have a very supportive husband who does pretty much everything around the house including shopping, cleaning and cooking without much complaint!
I will keep you posted and once again, thank you, ladies!
Lori
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  #7  
Old 6th January 2012, 11:16 PM
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:)

Sounds good Lori
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Old 30th January 2012, 12:26 PM
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research P stim-
The P-STIM is a miniaturized device designed to administer auriculo point stimulation treatment over several days. The advantage of using the ear for such treatment is that it offers numerous points for stimulation within a small area. Stimulation is performed by electrical pulses emitted through selectively positioned needles.

Point stimulation by the P-STIM is mainly used to treat pain. Use of the device is recommended for pre-operative, intra-operative and post-operative pain therapy as well as for the treatment of chronic pain. At the same time there would appear to be possibilities of using this concept in the future in the treatment of addiction and allergy and in special fields of anaesthesia.

P-STIM allows to perform continuous point stimulation over a period of several days and offers the patient a high degree of comfort and mobility. An advantage over drug therapy is that the patient no longer suffers any of the possible side-effects of pain-killers such as impaired reactions. In other words, the patient can continue to lead his life as usual, without loss of quality.

The folks I've seen are stunned by their relief-- but big warning- I think this is still considered experimental/altenative so may NOT be covered by your insurance.

all the best- from another chronic pain person
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Old 12th February 2012, 07:03 PM
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Originally Posted by Anessa14 View Post
research P stim-
The P-STIM is a miniaturized device designed to administer auriculo point stimulation treatment over several days. The advantage of using the ear for such treatment is that it offers numerous points for stimulation within a small area. Stimulation is performed by electrical pulses emitted through selectively positioned needles.

Point stimulation by the P-STIM is mainly used to treat pain. Use of the device is recommended for pre-operative, intra-operative and post-operative pain therapy as well as for the treatment of chronic pain. At the same time there would appear to be possibilities of using this concept in the future in the treatment of addiction and allergy and in special fields of anaesthesia.

P-STIM allows to perform continuous point stimulation over a period of several days and offers the patient a high degree of comfort and mobility. An advantage over drug therapy is that the patient no longer suffers any of the possible side-effects of pain-killers such as impaired reactions. In other words, the patient can continue to lead his life as usual, without loss of quality.

The folks I've seen are stunned by their relief-- but big warning- I think this is still considered experimental/altenative so may NOT be covered by your insurance.

all the best- from another chronic pain person

Do you know how readily available these things are?

Friš
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Old 13th February 2012, 05:25 AM
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Este- I did another quick Google search, using 'p stim availability' & found it available worldwide. 'In Europe the P-Stim device is a medical product registered for
the use in all indications of auricular acupuncture. Studies
support its use for the treatment of various acute and chronic
pain states.'
does that help? Anyplace that does chronic pain management, inclusing alternatives like acupunture, should be familiar with it.
A
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