Has anyone found anything that really works well, in dealing with pain from Gastroparesis? I've tried several things,currently including oral morphene and the Fentanyl patch. The Fentora lolipop was expensive, fast onset but short acting.
I have an appointment next week with my Pain Management Dr. I am also getting a second opinion, so your feedback on anything different would be helpful!
Katherine
Hi Katherine! I went to a pain management doctor last December but because my pain at that time was not isolated in one part of the stomach, he said he couldn't help me. He tried acupuncture by putting two needles on my right hand and left leg but my blood pressure went up so he got scared. My GI doctor who refuses to give me narcotics for pain referred me to another pain management doctor in his building, they called me to discuss it but just based on that conversation, they said they weren't sure how they could help.
I hope your doctor will be able to help you. Let us know what happens.
Love,
Lillian
Katherine,
I was prescribed Lyrica to help with pain. It is one that you have to gradually increase until you get to the dosage needed. I think it does help. It doesn't stop the pain completely though. I couldn't handle the 100 mg. twice a day that was the goal set by the GI doctor at Mayo, because it would make my fingers and legs to go numb. So, I'm cut down to 50 mg., it doesn't do as well as the higher dose and possibly I will be able to gradually increase it to get back to the higher dosage.
Judy
Katherine,
I currently am taking Ultram 50 mg twice a day
Lyrica 50 mg 3 times per day
Fentyl patch 75mcg every 72 hrs
Dilaudid 4 mg every 4 hrs as
needed
Most of the time my pain in bearable and it has taken a yr to get things to at least be tolerable. My GI handles the pain medicine for me and when I am in the hospital sometimes I consult with pain management. I do have trouble with some of the Pharmacy's when they see the prescription for the Dilaudid so I have started using the pharmacy at the hospital. It is a little further away from home but worth not having the hassel of the bigger pharmacies.
I hope your appointment goes well.
Charlotte
hi. I am on similar meds except dilaudid which they giveme at the er for migraines and spasms and 4 is the amount it takes for me too. It is hard to make them understand it takes so much. Would you express your pain to me. I scream with spasms all through the digestive process. What do they give you pain meds for? I get it for fibromyalgia and they say I should not need them. I have slow gastric emptying and need to be on domperidone. Can this cause that kind of pain. I may be looking past the forest for the trees here.
jeni
Hi Jeni,
My pain is predominantly above the navel. Sometimes I get intestinal pain, but mostly when I don't use enough Miralax to keep the stool softened. That is really important.
My pain is located in the Celiac Plexus, behind the stomach and pancreas, in front of the spine. It can radiate thru the back and spread out in the upper abdomen, under the ribs.
I see a Rheumatologist for the Fibromyalgia I also have. He prescribes Flexeril 10 mg. and I take one at night and 1/2 in day if needed. If I am in bad pain, the flexeril helps too. It is most important w/fibro to sleep adequately at night.
I take Effexor 37.5 twice daily for depression. This also helps w/pain somehow. This is an rx from my GP.
I see a Pain Management specialist. I wear a 50 mcg. patch of Fentanyl. This gives me consistant baseline pain management. i top that with oral morphene tablets. Oral meds are unpredictable if you have stomach emptying issues, as we do. Have you taken Domperidone yet? I think it is time for me to try it.
I usually go to the ER 4-6 times per year for pain management. Since I have a pain DR, I have paperwork I always carry to tell them what to do. They give me IV morphene usually.
My pain sounds different than yours. What studies have you had done? Have you had the smart pill? It is a camera you swallow. That is how they diagnosed the Gastroparesis for me since it stayed in the stomach for full 8 hours. If they can get it to pass out of the stomach they can visualize the sections of the intestine that can't be reached by colonoscopy.
It really sounds like you have a lot of untreated pain. I'd suggest you look into getting a pain mgmt. Dr. They put it all together as far as what is contributing to your pain. Symptoms are much more bearable if your pain is managed.
I'll look forward to hearing from you again there on the E. Coast!
Katherine
I also have the patch and methadone for breakthrough. The docs are always telling me that I need to get off of these dangerous narcotics but nothing else helps the pain. GI docs are especially against it with motillity issues. I have taken reglan but had reaction of muscle weakness and then domperidome has to come from canada and i did try it and yes it works. I should nt have stopped and need to get it again. I did not know that slow motility caused so much pain. My pain is high up on my chest bone is where most of the worst spasms are. They are so sstrong I scream out like somebody punched me. thus screamer... I want the little camera test. I have had colonoscopy endoscopy, slow barium swallow, lots and lots of tests and IBS was the answer and "theres a lot of functional pain out there it is not deadly" Thanks but pain makes living no fun at all. Thanks for answering.
jeni
Hey Everyone,
I found myself reading all the posts and agreeing with all of you. It is amazing to me that we seem to be able to find each other and our symptoms are always so similar yet the medical community is still so ignorant about GP!! Anyway, I take Morphine shots--IM. I give the shots to myself--4 mg every 2-4 hours as needed. I am getting tolerant to the morphine though so I may be switching to Dilaudid soon. I don't know who it was that mentioned taking oral pain meds is difficult when you re puking--Dilaudid also comes in suppository form because that is how I used to take it several years ago. I was told by my GI doctor that he doesn't object to my taking narcotics because he totally believes me that I am in pain but that the Fentanyl patch is the worst thing to use when you have GP because it really slows down the gut. He will not allow me to use the patch for that reason. He also put me on Ativan 3 times a day mostly for nausea but I think it helps my pain also. Hope everyone is having a good day. 5 days and counting down until I get my pacer!!
Michelle
Hi,
I have read all of the replies and I agree that we all seem to have this horrible pain yet the doctors, especially GI doctors do not want us on narcotics. My GI doctor originally encouraged me to go on pain meds and when I told him that my pain mgmt doc put me back on them, he was livid. He literally was yelling at me. I was so upset I started to cry. What am I to do. Most of the time the pain is so bad I am doubled over. The pain meds only help me a little bit but I will take something over nothing. My GI doc said I would eventually die due to my poor motility issues if I keep taking narcotics. Well, that was enough to get me to stop. I do understand his position and respect him very much. He is an excellent doctor.
Now I am back to where I started and am in horrible pain. I am going to do a pain mgmt program and wonder if any of you have done one and if it helped.
I have a friend who went through the same program I am going to do and it did not help her at all. She was actually quite upset with the program because you are not allowed to say you are in pain. What am I supposed to say. If I am in pain, why can't I say I am in pain. I have had horrible pain, nausea, cramping, bloating, etc. 24/7 for years now.
I was told that they also will wean you off your narcotics, but I am not on them due to the fear of God the doctor put into me. I just do not know what to do. I am even more depressed because there are so many people who have done pain mgmt programs and it has not even helped them. I have tried breathing exercises, meditation, yoga, and nothing helps. The pain is unbearable. I can't take it.
I am a TPN patient and barely eat any food. When I do eat, I eat mushy stuff like jello. I will also eat some saltines and mashed potatoes. I tried a j-tube for over a year and it did not work at all. I kept losing weight. The only reason I do eat is if there is any movement left, I am trying to keep it. I was told if you don't use it, you will lose it. I am eating less and less as eating makes me sick. I am contemplating stopping altogether. There are days where I go without eating and I do not notice any difference.
All of my meds are liquid and go through my j-tube. They back up into my stomach until I feel like I am going to vomit (I literally start to choke). The pressure has been so bad lately, my new j-tube is leaking out the end. At first I thought I was the caps, but when I opened them, stuff came flying out. (I believe this is due to my pseudo obstruction) I have tried a lot of different medications and none have helped me. I just do not know what to do anymore. I am working very hard at staying positive, but that is even getting hard for me to do.
Thanks for letting me vent.
MT
MT,
I know you think highly of your Dr., but he really has no right to tell you that you are going to die from your narcotics use. That is just ridiculous. You have a RIGHT to pain management. What does he want you to do, die from being worn out by the pain?
You need solutions, not judgement. Why not go back to your family physician and share this with him or her? In my experience, Pain management programs are good for coping skills, exercise suggestions, encouragement, etc but beware of any hocus-pocus that has you denying and suffering.
Your pain is real. It is caused by damaged nerves. Does your GI dr. have experience with gastroparesis? Mine didn't and he never even mentioned it. It wasn't until I saw motility specialists that I got anywhere.
Be sure you get what you need. Not everyone is good at fighting for themselves, but you sound like you have a good head on your shoulders. Take from each Dr. or each suggestion what works for you, and put together what keeps you alive, and what helps you be happy.
I am so sorry you are suffering. Katherine
DocandKate:
I noticed where you describe your pain-I was just wondering have they ever checked your amylase and lipase for pancreatitis? Your pain sounds very familiary to pancreatic pain. Just wondering. I think there are multitude of things that go on with gastroparesis but I'm beginning to think that alot of it has to do with sphincter of oddi dysfunction. Especially for those of us who have RUQ pain.
Also, does anyone know what will happen to those of us on tpn who can't eat or for that matter even drink enough liquids to stay hydrated? What if we lose venous access? Has anyone's doctor said what will happen in this case. I also tried tube feedings and had the stupid thing pulled because it didn't work and it caused more pain-I already have enough besides some stupid tube hanging out from my body causing me more irritation (but that's just me).
I'm not sure if any of you pray but I pray everynight to let a cure be found for motility issues-maybe some can join me-it can't hurt.
You are right, it does present just like pancreatic pain, but the tests were all negative. They think the pain is from the Celiac Plexis nerve bundle, located behind the pancreas. That is why it radiates through the back.
Pain and suffering equals misery. We have to try all the tricks we can to survive this. It isn't easy, and a cure, or at least some enlightenment on the subject would be great.
With so many bright young people out there, I do have a lot of hope! Thanks everyone for your replies to this request. Katherine
Hey,
It's me. I just wanted to let anyone know that I have two boxes of Domperidone from overseas that are still in their blister packs and boxes, it didn't work for me.
Point being...I can send it to who ever ask? I don't mind at all. I know some people may think that me saying that is odd but here we are like family and we help take care of each other. All of the many medications that we are all on are very expensive and most of us are on a limited budget. So if I can help...let me know
Sending Smiles,
Alicia :D
Hi Katherine,
Thank you so much and you are right. I am going to see my pain management doctor in August and talk to him about this. He is of the opinion I should be on pain meds and, as you know, my GI doc went balistic. May pain doc was also going to talk to his colleagues about a pain stiumlator implantation. That scares me but if it will help, I would be willing to give it a trial. I know it is just another source - potential of infection since I am on TPN but I just don't know what to do.
Your post makes complete sense to me and I will talk to my doctor about it. After he yelled at me he sent me for a pysc consult and when I told them what he said, they were very surprised. I just know that the pain mgmt program is not going to take my pain away. Maybe I am going in with the wrong attitude, but I have tried everything they say they do in it such as meditation, yoga, exercise, etc.
Thanks so much for your support.
Mary
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