[zukster]

Hey I'm here for my brother who was diagnosed with RSD about 3 years ago. Over the time he has been getting a bit worse but nothing like what he has been dealing with lately. He has been getting severe stomach pain and the doctors don't know what to call it. His current doctor says he can't get RSD in his stomach. He descripes the feeling in his stomach as if someone has a knife in it. Laying on his stomach helps for some reason as well. It also comes and goes like his RSD but much worse in pain and its there atleast once a day.

First I would like to get into a bit of detail of what he has now too see if this is indeed RSD in his stomach or something else.

So he about 4 years ago he had really bad knee pains and they told him he had a growth defect in his knee which means he had extra cartilage or something. So he had surgery on both knees to fix that and in doing so he got RSD in both knees. He has been lucky thus far and after 3 years it hasn't spread (Took one year to even tell him he had RSD even had his doctor telling him he didn't need the Vicodin he wanted). So they put him Neurontin right away and lots of Vicodin. That didn't work that they put him on Neurontin Methadone and Narco. It was working well to suppress the pain for awhile but then this stomach pain started happening about a year ago. During this time he became severely constipated so they figured it was all the pain meds making him constipated and that was his stomach pain. Now they have taken him off of Methadone and Narco and gave him Suboxone and Valium. He is also taking Symbalta for depression as well as Triliptal for Bi-polar.

So I am wondering 2 things; Does he have RSD in his stomach? Also is there any other medication and or treatmeants he hasn't done for the RSD in his knees?

[daniella]

You are a great sister to post and care so much about your brother. I know people who have rsd in their stomach. Some doctors though that deal with rsd just focus on it being in the limbs. I do feel though it is important to rule out other conditions or problems that this could be. With my eyes that is what was done. Has he been to a gi doctor? Has he had bloodwork since he is on all these meds?

[gramE]

Originally Posted by daniella

You are a great sister to post and care so much about your brother. I know people who have rsd in their stomach. Some doctors though that deal with rsd just focus on it being in the limbs. I do feel though it is important to rule out other conditions or problems that this could be. With my eyes that is what was done. Has he been to a gi doctor? Has he had bloodwork since he is on all these meds?

Just last evening I was informed of a ten year old who has had an issue with the valve into her stomach for some time now, but this week it becme much worse and they flew her to Cinnci to Children's Hosp. The phrase that made it to me was that this has now imprinted in her brain and it will be permanent.

Now, I did not get the name of what her original cindition was called but my friend whose niece is the young girl was sure that they are saying she now has RSD.

Could you shed any light on this subject for me Daniella?

[dreambeliever128]

Has your brother had any blocks. They might try that for the RSD. As for the stomach issue. I was on Methadone for over 5 years and can't take it now due to my constipation and stomach problems.
I was diagnosed with Motility Related Syndrome and Metabolic Syndrome. I am on Amitiza for severe constipation and Metformin for the Metabolic Syndrome. They work good until I have to take something for pain and then I am messed up again which I am now. I had to take meds due to a bout of the shingles and they caused my constipation to get worse again.
He might think about going to a gastroenterologist and have test done where they go down into the stomach and look around and also a colonoscopy.
Has he had any blocks? He might ask about them. He might want to see an Anesteologist for blocks.
I'm glad you are trying to help him. Support is important to people with RSD.

Ada

[zukster]

Sorry I forgot to mention what they have done for his stomach. So far they have done a colonoscopy as well as many blood test and even a cat scan. All of them came back clean and they said there running out of idea's. He is also tried literally every thing to help him poop, but the problem is he is scared to take them because it hurts so much worse when he takes it and just falls asleep within an hour or two and then he has to do it again. The miralax really works but it puts him in so much pain he can't cope with it.

Thanks for all the support and replies!

[dreambeliever128]

I was put on Merilax by a Gastro that said it most likely would make me worse and it did. As I told my PCP, if it's going to make me worse why give it to me.

The Amitiza is a new med that has only been out a year or so and it does help but what is bad for RSDers', they have to take other meds that add to the consitpation. The Prednisone made me worse when I took it for 7 days for the shingles. A lot of meds seem to add to our dilemma.

Have him to ask about the Amitiza. It did take awhile for it to start helping me but now I don't want to go without it.

Ada