Afraid
 

My brother is 25 yrs old, he has been in and out of the hospital since he was 19yrs old when he decided to join the army. He was stationed in Seattle, when he got a virus called Guillain-Barre syndrome, after that went away he developed Complex Regional Pain Syndrome on his right leg. He has been prescribed so many different medications to control the pain but none are helping. They have given him tranquilizers to knock him out for some surgeries and those don't help..Its to the point where the doctors are starting to worry because the pain is getting out of control and they are not sure what to do. They know that it is possible that all the meds could affect his insides..He went back to the hospital three days ago, he started throwing up everyday and he barely has an appetite. I'm not sure if its the medication that has also changed his personality. He's not depressed or anything like that but he has changed to where he is acting like a child calling "mommy" and laying with mommy and asking for toys for his birthday and for Christmas. I don't know what will happen, we are all scared and my mom has been stressed out, to where she's getting sick ulcers, kidney stones. I don't want to think about the possibility of losing another brother..

I am so sorry for all of you. I will keep you in my prayers. I have no advice except to gather all of his doctors and try to figure this out. Fondly-Carol

Hi Katric,

I too am sorry for the recent upset in your family. Unfortunately, this illness does affect the whole family. Does your brother suffer from any post traumatic stress disorder? It could also be the medication. You are a wonderful sister for searching information to help assist your brother in his journey, or recovery. There are many other options/alternatives people have tried rather than taking medication. I would suggest a pain psychologist to address this issue. They are also very supportive for the family too. They offer biofeedback, visual imagery, relaxation techniques, etc., to help manage his pain but you need to find out what is causing the personality change and they will help you with that.

I believe most of us would agree that with this disease you have to use alternative treatments as supplements, everyone has different strategies that work for them. God Bless your family...

Jeanie

So sorry that you and your family have to go through this crazy ride with RSD. You absolutely came to the right place to vent and get it off your shoulders. I can never reiterate that the board has saved me and my family. There is not one person on here that won't give you a shoulder to cry on, listen or just pray and give you the comfort that you need at the time. Please have all your family join, the more the merrier...no one judges here and it has been my saving grace...my prayers are with you and please come back often :grouphug:

Cindi

I am so sorry that you and your family are also suffering from RSD/CRPS. The amount of pain your brother must be feeling on a daily basis is indescribable. For me, if I was blind, you could not convince me that my arm was not filleted open bleeding out, hanging lifelessly next to me. I've begged doctors to cut my arm off, although now it has spread higher to my neck, and cutting off limbs doesn't get rid of RSD anyhow :(. I have recently had a SCS implant to try and help with the pain. So far it's not really helping, but I'm still healing. I have been able to "heal" the most by coming on these support groups and talking to a therapist weekly. I would strongly urge your brother to find a support group that HE feels comfortable expressing himself on. Just finding others that are going through your pain, and being able to relate to SOMEONE brings you such a sense of relief and hope. I will give you my email below, I encourage you or your brother to contact me just to talk about CRPS/RSD and how it affects the family.
Best wishes for you and your family,
Eli Jennings

katric,
I'm so sorry about your brother! GB is a tough one, and then CRPS, this is a tough row to hoe.
You need to find doctors who are well versed in dealing with the RSD/CRPS. A university hospital with a good neurology dept is a good place to start. Neuro's can be funny though, big ego's. Call, ask for the 'Cheif of Neurology', and give him a short interview on the phone. If he can't give you five minutes, he's not your guy, nor does he have anyone on his staff.
This may require more than one call..

Go to
rsdsa.org
they have a doctor finder by zip code, but the calls are the best way.

We have a Triangle of care for CRPS, and one of those is a good neuro/pain doc to handle the medications. It sounds as if this is still a weak spot.

Next, psych care! And, this seems as if it's being completely ignored! Maybe your mom should go too, but he needs a psychiatrist that deals with chronic pain patients. (usually, a good pain doctor will know one of these).

Then, excercise. This is a 'use it or lose ' it disease. He's got to get his pain under control, so he can still move around!

I've had this for 28 years, and it's full body, along with a good handful of other ailments.
Good care is tough to find, when you do, respect it. I urge you to take these steps starting with a good knowledgeable doctor who knows CRPS! There are specific steps that can be taken, to hold off it's spread for as long as possible, hopefully forever!

I'll keep your brother, and family, and yourself in my prayers! I too, think it's great that you are looking out for your brother!

Pete

Dear Katric -

This sounds like an unbearable nightmare for your family. I join the others, know that we're thinking of you.

First off, where does your brother live? We might be able to make some suggestions. And while I agree with Pete's comments, you should know that some university hospitals are better than others. The University of Washington (Seattle) is to be avoided like the plaque. And just where I live in LA, the pain program is much better at USC than UCLA, even though UCLA has significantly higher ratings overall, and is one of the best neuroscience centers in the U.S.

The other thing is that a GB/CRPS combination is not unheard of. Certain viral infections often lead to a susceptibility to CRPS (RSD) and Guillain-Barre is on the list, although Human Parvovirus B-19 apparently tops them all. (References available upon request.)*

And for what it's worth, "mild cognitive impairment" (which I've got) is common in CRPS, see, The Natural History of Complex Regional Pain Syndrome, Schwartzman RJ, Erwin KL, Alexander GM, Clin. J Pain 2009; 25:273-280 http://www.rsds.org/pdfsall/Schwartz...lexanderGM.pdf AND Neuropsychological deficits associated with Complex Regional Pain Syndrome, Libon DJ, Schwartzman RJ, Eppig J, et al, J Int. Neuropsychol. Soc. 2010 May;16(3):566-73, Epub 2010 Mar 19, http://www.rsds.org/pdfsall/Libon_Neuropsychol_2010.pdf

That said, I know of nothing specifically linking CRPS/RSD with any form of dementia, and checking the massive records of published medical articles maintained by the NIH, called PubMed, and accessible at the upper-right of every NT page, came up empty. And searches under both "Guillain-Barre dementia" and "Guillain-Barre Alzheimer's disease" were essentially unproductive as well, a few articles noting commonalities in treatment etc., but nothing linking the two as such. So I don't know what to suggest on that front.

Clearly, your brother needs expert medical care, for which the VA is not so hot, at least on CRPS related issues. (For active duty troops at Walter Reed, that's another story entirely . . . )

Mike


* The symptoms of B-19 are - at least in adults - relatively non-specific, so that a diagnosis is rarely made, except through immune assays. See, generally, http://en.wikipedia.org/wiki/Parvovirus_B19 When I first saw an article on this, I was tested for B-19 antibodies and my IgG levels (showing antibodies to a past infection) were very high, while the IgM test (antibodies to a current infection) came in at zero.