Pain medications

• By chewy1
• Posted December 20, 2008 at 9:08 pm
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Loie,
I think this will be one of those questions where noone will really be able to give you a perfect answer. I'm not sure anyone has found a medicine that works for pain that doesn't mess with the motility too. I think it's just another one of those that you have to find the one that does the least slowing down for you but helps enough with pain at the same time to be worthwhile. In other words, the same old trial and error stuff you are already so familiar with...I most recently had been using vicodin which definitely does slow down motility but with my last spell being so bad and not being able to hold down anything by mouth for so long and the pain got so bad the doctor has switched me to the fentanyl patch. I haven't decided yet what I think about it.
Judy

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• By Loie
• Posted December 21, 2008 at 1:10 am
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Judy,
I agree 100% about almost everything slowing down the gut...and it is all trial and error but what I am taking now is causing me major problems. I take Loritab 10 four times daily which I have cut down to 1-2 every few days. I also take Avinza which is a timed release morphine compound. I should be off the Avinza within the next 6 months.
I tried the Neurogesic patch for about 2 years before I realized it was making me a nervous wreck. It helped a lot but I couldn't handle the irritability...neither could my family!
I am hoping to hear of meds that have helped others, I haven't tried, or something I haven't heard of.
I hope the patch helps. Anything is worth trying in my opinion. Like you said, it is all trial and error.
Thank you for taking the time to share. I hope you have a very Blessed Christmas!
Good to hear from you. I always enjoy reading your input.
Loie

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• By DGSTRICK
• Posted December 21, 2008 at 11:18 pm
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I am currently on two kinds of Morphine. Hydromorph contin slow release and fast acting. they work for me. I have been trying the Tens machine. it is like electric schock from a probe over acupuncture sites. I do not believe it wil work but I am at least trying it. I had a Home care Nurse come by and accuse me of needing narcartics anysomys if I did not get off the morphine soon. She said it was addicting and all long term patients on it get addited. I got scared about it so I signed up for physio therapy. When I saw the Surgeon he was upset at the nurse for saying that. She had no right questioning the Doctor and the surgeon for putting me on pain meds. I have severe upper GI Motility Disorder. i am in constant pain even with meds. They told me I will have ht pain for life and the meds will help make me more comfortable. he told me as did the 3 surgeons and my Doctor prior to stay on a regular schedul for the meds and not to miss a dose. if the pain gets too out of control for me I am in hospital. So pain meds it is for me I guess.

I just had another Feeding tube replaced this week..

Take care

gary

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• By Loie
• Posted December 22, 2008 at 12:43 pm
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Gary,

Thank you for taking your time and energy to respond. The Avinza helps but I think in the long run it is causing me more problems with motility. Thinking back, before I took it I had diarreha so bad I couldn't leave the house. As soon as I started it I went to the opposite extreme. At the time I was thinking more of the Carcinoid Syndrome (cancer) than the CIPO. Now I am having more of a problem with the digestive tract so I am going to have to do something... anything! So, I have decided to discontinue all pain meds and start over.

The dr. that prescribed it told me that I would be on it for life also. I didn't take it for long before I realized I was addicted, but I thought, 'What choice do I have if I want to be able to function because of the pain.'

Also, the dr. I have now doesn't understand the pain that I could possibly have from Idiopathic Intestinal Pseueo-obstruction...only because she doesn't know what it is. She set me up with a GI Oncologist...that is how little she knows about it. I have recently moved to North Alabama from Santa Fe, NM and have yet to locate a dr. who is knowledgable and understands. I am in the process now of getting a referral .

I am sorry that home care nurse overstepped his/her bounds. I know how those kind of attitudes can make you feel... As if you need that to deal with while you are already dealing with everything else. That is terrible.

Sorry to have gone on and on. It has taken me about 15 minutes to respond. I am in such pain right now I can't think straight. I have started over about 5 times.

You take care. Hoping you have a very Merry Christmas and very productive New Year!

Hang Tough,
Loie

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• By DolphinRider
• Posted December 23, 2008 at 1:35 pm
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I take mobility meds an hour before vicodin, ultram, and others. I can certainly feel the wooziness of the meds but I try to not take them weekly.

Tens devises can be wonderful at times. I'd suggest the four pad one.

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• By Loie
• Posted December 24, 2008 at 10:42 am
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Dolphin Rider,

I used a tens unit many many years ago for my back. Sometimes it helped...sometimes not. It is definately worth a try. I really do hate taking pain meds... especially regularly.

If I can get a dr. that will cooperate with me on this CIPO issue I could ask. I talked to her Monday asking for a referral to a specialist and she told me that wasn't necessary since there is nothing that can be done for pseudo-obstruction anyway. I am so frustrated! She said that is last on the list of things to be taken care of. Apparently she isn't aware of how many things are effected by these motility disoreders.

Sorry, I almost went on a rampage. Caught myself just in time...I think.

Since I have to compose myself before I REALLY come unglued, I will close. Thank you for your ideas. I really appreciate both of them.

I sincerely hope you have a Merry Christmas and very healthy, productive New Year!
Loie

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• By Christmaslady
• Posted June 18, 2009 at 3:27 am
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I have been in severe pain from Liver and kidney failure since Nov 2004. Up til this point I have refused all hardcore meds because I did not want to do anymore harm to either. However, I have nerve damage in my leg to the point it makes me rock and cry in bed. I can't even distract myself. I have just found a doctor that would prescribe me something stronger than just Neurontin. Today I started a low dose of Avinza 60mg. I felt a little difference for a little while, however it wore off quickly. Can any body tell me the dose for RSD? I made this decision after 2 specialist told me that I'd have to live with this the rest of my life and had three failed nerve blocks, and even tried Methadone for the pain. I also have FM. Cfids, Hypothyroid and GP. He also told me to keep my house stocked with Grape Juice, Prune Juice, Apple Juice, Fruits, veggies, and lots of water. I try to remember to take 2 Dolculax 2x a week anyway for my GP. Should I be doing any thing else to keep things Moving? I had a time with this when I was on Methadone and don't want to have to do the constipation thing if it can be avoided. Thanks Angela

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• By Loie
• Posted June 28, 2009 at 2:48 pm
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Angela,
Avinza can definately cause constipation! I took 90mg for approximately 10 years. I am trying to get off of that but my dr. said it will take a year to do so. I am now down to 30mg. and can definately tell the difference with diarrhea and the pain level.

One thing I can add to help with constipation is to drink A LOT of water. Also, if you can tolerate apple juice, that can help some.

I am sorry you are having so many problems. I do know that the Avinza helps ememsely with fibromyalgia. I also have spinal stenosis which is effected greatly by decreasing the Avinza. The highest dosage of Avinza is 120mg., so 60mg. isn't too bad.

I too have a problem with it wearing off quickly. But the problem I am having now is the drs. don't think I actually have Chronic Intestinal Pseudo-obstruction. They think it is the pain medication that is the cause of the motility disorder. ALTHOUGH...I have gone throught all of the testing and was diagnosed at Mayo Clinic in Rochester, MN in 1985! Then rediagnosed at Mayo Clinic in Jacksonville, Fl in 1990. It really ticks me off! I have to go off of the pain meds to prove to them the problems I am having with my digestive tract. Now I am in so much pain I can hardly function. The days I can't walk I want to call the drs. and let them have it. Actually, I want to wabble into their office so they can see the shape I am in. Maybe in time things will change. I think I will have to get off of all pain meds to prove my diagnosis. That is the most difficult part of any disorder, if you were to ask me...having to prove to the drs. the symptoms are real.

Hang in there. I hope the Avinza helps but just remember it is very addictive. Also, when you have any surgery done the drs. take into consideration that you are on morphine and will not give much pain medication to help with the pain. What an experience that turns out to be! I was also told that it takes four times the medication to put me under for any surgery or procedure. But then again,Angela, what are we to do?

Where did you receive the nerve blocks? I use to get them in my throat for my head aches. also, in the back of my neck for my spine. All it did was manage to temporarily paralize one side of my face....totally useless. I also used the tens unit with no real success.

I don't like pain meds... mainly because of ''depending'' on the drs. to get them refilled. I hate that part of it. I no longer feel woozie at all, but do find that I have to take the meds every day or I am completely disabled and VERY nervous and cranky. Just ask my family!

I am sorry, I didn't mean to ramble. But I do thank you for your reply and hope you find some answers.

Let me know how you are doing with the Avinza. I will be keeping you in my thoughts and prayers.
Loie

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• By JoAllison
• Posted June 28, 2009 at 6:12 pm
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Does this doctor understand you have GP? Fruits & veggies stocked??? Does he realize you can't eat them without pain? How is that supposed to help?

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• By Loie
• Posted July 1, 2009 at 10:08 am
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Jo,

My dr. told me I need to eat a lot of veggies and fresh fruit also. That goes to prove how little some of these drs. know...or "understand", is a much better word to use here.. She said I can eat anything as long as I peel it!... especially apples would be good for me (This was when I had a bezoar!). I told her if I ate one bite of an apple I would wind up throwing up until I vomit feces. She had the nerve to tell me that the reason I throw up fresh apples is because of a mental thing due to memories of throwing up. It took everything I had not to go off the deep end. I can't even eat cooked apples!

Next time this happens I am going to call her and go to the emergency room so she will believe me. I can't believe after all of these years I am having to prove once again that I have severe problems. I think the reason is because I am not skin and bones...I am overweight now. BUT... if she knew anything about gp or CIPO she would also understand the fluctuating weight issues. Plus the cancer medication has made me gain 70 pounds. Such ignorance really bothers me!

I really wonder about some of these drs.! My gosh, can you imagine the pain Angela, or any of us would be in if we ate fresh fruit or fresh veggies? UNBELIEVABLE!!!!!!!!

I rambled again. I am sorry!

Take Care,
Loie

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• By Loie
• Posted July 1, 2009 at 10:16 am
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Angela,

Fruits and veggies do work for the "Normal digestive tract"! I can't imagine the pain you would be in if you age them! Although, some can. Personally, I , amoung many others would wind up in the hospital.

Another thing that helps with constipation besides Miralax is walking...if you are able to. I was able to walk half a mile yesterday. That is the first time in years. It was wonderful. It didn't help my stomach but did wonders for my mental state!

Anyway...watch the fruits and veggies! Jo was absolutely right on on with this one! She usually is. She just has to stay away from fruit cakes around the holidays. She had a terrible bout with the fruit cakes. (Personally, I thought fruit cakes were for show...apparently not!) I still find that so funny. But that is a perfect example of what eating fruit can do to you!

Hang in there and take care,
Loie

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