RSD/CRPS & Gastroparesis/Mayo Clinic

I am new to this site & don't know if I am doing this correctly. My daughter was just diagnoised with gastroparesis about a month ago after undergoing so many tests. Reglan and Tigan did not help the nausea so she is now on Domperidone. It is helping a little better than the other two meds. She only started that last week as she had to wait 3 weeks for it to come from Canada. She also cannot tolerate Ensure any longer although we do freeze it into pops some times. She does Instant Breakfast, skim milk & fat free frozen yogurt. The Doctor thinks this problem was caused by the meds she was taking to control the pain she has from another incurable chronic disorder called Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome that she has had for 14 years. Does anyone else out suffer from this disorder?
She still doesn't know how serious and long lasting this can be and I don't have the heart to tell her yet that she has yet another incureable chronic disease to deal with.
I have become very scared & depressed reading about the horrible monster that is effecting so many of you & now my daughter. Thankfully right now she only has the neausea, no vomiting. She does have chronic constripation but has had that her whole life. She is 42. Has a very supportive husband and 9 year old twin boys. Any ideas or hints for food would be so helpful.Has anyone been to the Mayo Clinic for help? Thinking of taking her there. Thanks for any help you can give me.

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Hi, so sorry to hear about your daughter's illnesses. I have had gastroparesis for 8 yrs. been on all the meds and after a short time they stop being effective. just got over a very severe attack. the only thing I could tolerate is plain bread w/butter,yogurt and a chocolate protein powder whipped with milk. some people can't digest the milk products and they mix the protein powder w/ water. hope your daughter has better days. good luck.

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What a wonderful Mom she has -- doing the research and trying to cope! I have GP, too -- and I'm not so sure whether it is a complication of type 1 diabetes that I've had for 52 years ... or a result of a Nissan Fundoplication done at the Mayo Clinic 4 years ago. The NP is done for severe acid reflux -- the drs. take part of the stomach and wrap it around the connection between the esophagus and the stomach, (which allows acid to come up into the espohagus) to try to stop the flow of acid up. There have been incidences of the Vagus nerve being damaged in this surgery -- but diabetics also have autonomic neuropathy which involves damage to the vagus nerve over time. Either way, GP is a way of life for me now. Like your daughter, I do not have it as severe as some of the people on this listserve describe. I have cramping pain when I take meds to relieve my bowels and nausea a lot, but the vomiting is rare -- sometimes I cough up quite a bit of mucous, though. I think we all have to do the best we can with a very unpleasant chronic condition and support each other in dealing with it. Maybe your daughter would find some support on this list, too!
Carol

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Thank for the support. We are waiting until she sees the doctor again. He has told her nothing but to take her meds & keep on a liquid diet. I'll keep you posted.
Would love to hear about the Mayo Clinic for this problem.

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Hi Jenns mom,

Is she still taking the pain medication? You may want to ask your GI if the GP might be temporary if caused by a medication. God bless!

Mare

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She is off all the medications he felt might be causing the GP problem. Now she not only has to deal with the nausea but also the pain from her RSD and failed back surgery. We were so hopeful that once she went off the meds she would start feeling better but hasn't happened. Now they have to see what they can give her for pain that won't effect her stomach.

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I use Ultram (Tramadol-generic) for pain. It doesn't effect motility like others. It's not as strong either, though. I've also used acupuncture to help with pain...it's worth a try. You have to give it time though...the more you go the longer the pain relief lasts. I've heard it takes quite a bit of time for medicine induced GP to go away, but that it can go away.

Thinking of you,
Mare

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Hi Mare,
Yes she had been taking Ultram among others but is off all except her Tens Unit, Spinal Cord Stimulator and Excedrin. The last doesn't do much but that is what they told her to take until she goes back to the GI doctor & than her pain management dr. Thanks for the ray of hope about the med induced GP taking longer to correct. She seems to be doing pretty well so far on the Domperedone. Are you or anyone taking any vitamims like a one a day. I know that with only the liquids she is not getting much nutrition.
Jenns Mom

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Don't bother with Mayo...but this is my opinion based on my own experience there.

RSD - had it for 4 years and it is now in remission. I could not take pain meds (caused n/v) for the RSD, but found that Lidocaine patches were helpful to some extent. I got the most help for the pain from antihistamines (Benadryl). My RSD went into remission after I started a very rigorous physical therapy program (took about 4 months of very painful and hard work). The RSD is not gone (residual tingling in my foot where the RSD started), but I don't have any pain from it anymore as long as I continue to take walks/exercise frequently.

GP: Has she tried Interferential (IF) Electrostim. treatments (similar to TENS, but the geometry of the electric current is different than TENS) for her Gastroparesis? I have found it very helpful (along with colonics) for my gut motility (I have gastroparesis, pelvic floor dyssynergia, dysphagia, and generally a slow gut all the way through).

Good luck,

-Razzle

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Hi Jennsmom,

I drink Carnation Instant Breakfast which is loaded with vitamins. You can mix it with skim milk, almond milk, soy milk, etc.

I also take Centrum Liquid Multivitamin. You can find it at Walgreen's.

Be careful with Benadryl. My GI told me that it slows down motility dramatically.

I hope this helps!
Mare

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Hi Razzle,
Glad your RSD is undercontrol. She was so misdiagnoised in the early beginning that it made things worse. She does wear the Lidocaine patches on her foot so she can tolerate a shoe and she is also taking Ultram. I thought she was off that. Never heard of an IF but will check it out.
She was an Occupational Therapist when she developed RSD so she did have extensive Pt. She tries to walk as much as possible because she needs the weight bearing exercise but when you feel so sick that is hard to do. Thank you and everyone for all their hints & information.
Carolyn

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Carolyn,

There is also the ReBuilder machine that may help with RSD. I did not know about such a machine when I had my RSD (been in remission since 2001), but discovered it when looking for info on something else. Check out http://www.rebuildermedical.com/ (I have no financial connections with the company or products on this website). The website claims to be able to restore proper function to the nerves, thereby reducing or eliminating the pain.

Yes, I went through years of misdiagnosis and finally had to travel 3000 miles to an RSD expert (who is now retired) to get diagnosed properly, only to find out that no local doctors would continue his treatment protocol...but it really didn't matter, because I couldn't do most of what he prescribed anyway. It was sheer luck that I happened to get sent to a medical school professor who was able to get me into remission with the special PT program. Before that, everyone just blew me off or told me it was Fibromyalgia and that I needed antidepressants (which made my RSD pain get worse).

Anyway, I hope the ReBuilder website is helpful info. and I wish you & your daughter best of luck finding the answers she needs.

Take care,

-Razzle

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I have been to the Mayo Clinic for Gastroparesis. I spent weeks in and out of the ER in Minneapolis, saw countless doctors, even had my gall bladder out before my parents finally brought me home to Rochester. When I ended up in the ER again I was admitted immediately and they knew exactly what was wrong with me. I saw a team of doctors who did extensive testing to assure there was no underlying cause of my gastroparesis. I originally had a stomach virus that stopped my stomach. Mayo Clinic does a lot of research and was able to diagnose my problem and help me figure out a treatment plan, unfortunately, as you have discovered, there aren't a lot of options. It does sound like your daughter has motility issues with her lower intestinal track, which I hope has been looked at and for which she has been instructed on how to cope with. I am forever grateful for Mayo Clinic and the care they took of me and their ability to answer my questions. It may be worth a trip there, but what I have found is that with time, and some alternative therapies, my stomach always speeds back up. I say that in the plural form, because unfortunately, this is a cronic problem and does tend to come back from time to time, though it generally doesn't last more than a month. I see an occupational therapist who helps to stimulate the movement of the gut at this time and also does healing touch and I see a chiropractor and accupucturist. I highly recommend these treatments because the medicinal options are icky and if nothing else, she'll be more relaxed. Mayo has been wonderful in helping me understand my condition, but they have also encouraged I looked into options that I think help, because right now, there isn't a magic pill. If your daughter does have an underlying condition, they may be able to help her figure out what that is.

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askdeila,
thanks for the information on the Mayo Clinic. My Jenn was an Occupational Theriapist before RSD & failed back surgery made it impossible for to work any more. That was 14 yers ago. Will check into what OT can do for her. She also was getting Reiki, healing touch, for her RSD. It did help her pain. I am hopeing she will try that again. She goes back to the GI doctor on the 10th so am anxious to see what he has to tell her about this disorder. He really didn't explain it to her when we were there. Only prescribed the stomach emptying test. It took her 193 min. as opposed to normal 90 min.to empty out. Told her on a scale of 1 to 10 she was a 9. Take this med, Domeridome and see me in a few weeks. Not much information at all. I am glad some things work for you. The Domeridome is helping ease her nausea. So far she only has nausea and a little pain.
I'll keep you posted.
Carolyn

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I live in the East and go to Temple Hospital for the GP. I feel they are trying hard to help me. They run a 6 hr. emptying scan. Like your daughter I had tried reglan and the domperidone had not worked but I do not vomit am nauseated and bloated with pains and constipation. I am allergic to pain killers so I have to do without. I take probiotics and fish oil right now. Now I have back and sciatica too so who knows. They are now down to a pacer or gastric tube for me. I still cannot get past pureed food but do tolerate the Ensure. I would inquire sbout the testing as I had a 6 hr. emtying scan and still had 65% left after 6 hrs. I get a massage every week which hurts at times but really helps everything move. I do not know what RSD is so I can not help on that.
I hope that helps some. Also, I eat pudding and ice cream and puree some pasta with baby food carrots or swuash as the sauce. I am gettting creative but am sick of this.

Keep i touch.

Joan

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My daughter has been to Mayo, Fla., and found out one year ago, that no one will see her or treat her IF she is taking any pain medicine whatsoever. She is on a low dose of Dilaudid, every 8 hours, for chronic pain from cancer surgeries/nerve damage. Having already lost her colon to no motility, her nausea and vomiting is 24/7.
She is also on phenergan IV or pills, ativan IV or pills, and many other necessary meds, having eliminated many drugs to help with GI issues.
What is amazing to me is that my daughter has gone through 10 years of misery, surgeries, cancer treatment, etc., and has survived so much. Now she has constant nerve pain and gastroparesis all the time.
Diet doesn't seem to help....
Atkins liquid shakes are lower in sugar, and she tolerates this much better than Ensure.
I is amazing to me that so many well respected academic hospitals have so little knowledge. We are going to a new GI dr. next week, and I will share any helpful knowledge that we gain. Donperidon, (Motillium) is helpful.
My suggestion: Send documents for Mayo to review, BEFORE, you travel there. If there are pain patches involved, they may not cooperate with tests or treatment until all drugs have been stopped for a while.
However, there are no suggestions to help with pain in the meantime.....
Same for John Hopkins and MD Anderson.
Best of luck,
another mother.....

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The Medicine Shoppe in Reading Pa. can provide you with the Domperidone more quickly. I fax my daughter's prescriptions to them and call in when she needs a refill. They mail the prescription and I have it within 1-2 days. Your doctor may know of a pharmacy nearby that can help you. If not the # for the Medicine Shoppe in Reading is 610-378-1396. Their fax # is 610-378-5529. I hope this may at least help you get your Domperidone more quickly.

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Hi there.
I have had RSD for over 10 years now. It is in remission, but I have had 4 or 5 episodes. I get nerve block injections, and it usually takes five to nine of them before it goes into remission. With each occurence, it gets worse and spreads further up my foot/ankle, and possibly to my other foot. No pain meds seem to help for me with that.

I also have severe gastroparesis, and have a J-tube to supplement my feedings. I can keep down Ovaltine sometimes, low fat cottage cheese, and unfortunately very sugary foods, which aren't necessarily helpful. I have bad reactions to both the reglan and the domperidone, so we are trying anti-nausea medications versus motility stimulants. Not all that helpful.

I think that both my gastroparesis and RSD/CRPS are from another condition I have called Ehler's Danlos Syndrome, hypermobility type. I am overly flexible/"double jointed" and it effects my joints, nerves and motility. I have already had my gall-bladder taken out as well due to it. It was terrible to learn of ANOTHER condition, like you were saying about your daughter, but relieved to know why it was all happening to me. It does get overwhelming, but I just try to deal with one thing at a time.

She obviously has a great support system, which to me, has been better than any medication. She is lucky to have you!

Sarah

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Hi Sarah,
I am glad your RSD is in remission. Jenn is coping pretty well with the pain. She is using pain Lidocaine patches on her foot and she also has a spinal cord stimulator. Thankfull she does not vomit, only the nausea, some bloating after "meals" and sometimes pain in chest and now near her kidney. She thinks she may have a stone. Her RSD came from an injury to her foot and the doctor thinks the meds for pain caused the GP. She has had chronic constipation since she was a child. I am sorry that not much is working for you. Hopefully someday they will find something to cure or really control this monster GP.
I feel lucky to have her as a daughter. She is my hero.
Carolyn

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Thanks so much for the information about The Medicine Shoppe. I will see if there are any in my area of NJ that may do the same thing. If not I'll contact them. We were so glad that the domperidone worked for her after waiting so long for it to arrive from Canada.
Carolyn

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bstrings,
Thanks for the information on Mayo & John Hopkins.,
Jenn is coping pretty well with the pain. She is using Lidocaine patches on her foot and she also has a spinal cord stimulator . So they may not take her at all. I don't think she is ready to go there yet but we may some day. My heart goes out to your daughter. As a mother I know how your heart is breaking for her but our girls seem to get the strength from somewhere to handle what life has thrown their way. I can only believe in my daughters case it comes from the many prayers that are being sent her way each day. It helps us stay strong for them. I will keep you and your daughter in my prayers as I do everyone with this monster disorder. Has your daughter tried a Tens Unit for her pain. Jenn uses one of these also. Every little bit helps a little.
Carolyn

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