Hi everyone...... I've hit a rocky patch, and I would so appreciate ANY of your thoughts on the subject. Here goes.......I am the youngest of four children. (I'm 37) I am blessed to still have my aging parents here, and I am very close to them. I grew up in a very tight knit happy family. Late last night I received a phone call from my very best friend who is like a sibling to my own siblings, and certainly like a sister to me. She called out of love, crying to tell me my very persuasive attorney brother had called her to ask her what he could do for me.....he is a fast talker and he wants to fix everything he can. (He does have a huge heart.) He was all worked up in a tizzy about thinking I've been told so many things through the years that he was certain (Even though RSD has been confirmed by 6 different Dr's) there was another explanation...... Maybe this was all anxiety on my part. There were several more things he said that cut like a knife. He ended up the conversation with her by saying I just love her too much to sit by and watch this happen. They both ended up in tears. My brother and his wife have 5 children, He has an outrageous work load, he is very busy, and worries about everything constantly. I called him this morning and we talked for 3 hours. The first hour was him hollering nonsense. He was pulling at straws for this illness to not be real. I just had a feeling to let him get everything out. He said that he had held a family meeting with all of my family on Sunday to come up with a care plan for me.....but ended up angry with my parents who have accepted this disease, and felt like they had given up. He pulled out his checkbook and started saying. I will write out a check for any amount that can get rid of all of this. He came to the meeting with "evidence" that this is not really happening to me. That night apparently ended up with everyone in tears and feeling very frustrated. Getting back to our call. He yelled the first hour. The next hour I patiently explained this disease to him, but I got interrupted at every turn with him venting all of his frustrations. The last hour turned terribly sad......his hollering turned into tears and he said, "you are my baby sister, you are the Sunshine for our entire family, you have had a gift of being optimistic and seeing the good in every situation since you were a tiny little girl. I cannot sit by and watch this happen to you." He said, "I would lay down in front of a truck for you. I miss you terribly at every family dinner. That's why the entire family eats your little girl's Sunshine soul up because she is you. I'm angry with every Dr that has just put you on more and more medicines over the years, and you've only gotten worse. I want to help you!! I want this new Dr. to sit down with all of us and explain why this is taking you from us. I avoid your phone calls so much because I can't handle how it breaks my heart literally in half when you are down. I can't take all of the pain. I just can't handle it. I love you too much. You are Jenni. You are our little sister that we all love so much. You are gifted and talented. I miss hearing your laugh. We all miss you terribly when you are not with us.....I feel so confused and angry as to why some days you are yourself and others you can't move much less be apart of our family nights. We feel like you are too accepting and giving into this disease." I started to cry for a couple reasons. One was feeling grateful to have a brother (and sisters) that love me so fiercely, and the other is that they are hurting and grieving. He ended with saying I want to go to your next Doctor's appointment. I want to hear it from him, and if he does confirm that you do have RSD what we can do to stop it!!" This is the first time since my diagnosis of Full body RSD (14months ago, but I had developed it several years before, just not diagnosed) and more recently brain and eye involvement that he became just completely unglued and does not want to believe it. A question I have for all of you is this.....I have my 2nd appointment with my new Dr. coming up. My brother wants to cancel his work plans and go with my husband and I to that appointment so he can understand and come up with a plan with the Dr. to help me. I know his heart is in the right place and is very heavy, but I am fearful that he will say things like, "this is all in her head", or monopolize the conversation and not leave me with adequate time for my own concerns. I am overwhelmed with all of it. Do any of you have any thoughts on the matter? Thank you in advance. I feel defeated and overwhelmed.<br />
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I saw this listed under the thread for Eye exams and caffeine. Instead of retyping it again, please check there for my response.neurotalk.psychcentral.com/thread226545.html

hi still. i think it's really awesome that your brother cares so much for you. but a few things he said like that you're giving in to rsd or that it's not real and all in your head are not true. rsd has physical symptoms as well as constant pain which is proof that it is not all in our heads. i also think that personally if it were me i would get some information about what rsd is and how there is not cure for it and have your brother read it. i would also have him read about the various treatments to manage rsd pain one of which is medication which works for some people like me and occasionally has to be increased because of rsd spread for example.
then once he fully understands what rsd is and how it can be treated then maybe i would consider taking him to a dr appt with you. (this is jmo though). i would want to make sure he is calm at your dr appt and not mouthing off at the dr, because in my experience with drs throughout the almost five years i've had rsd, "they don't like when you mouth off at them" and it might compromise your relationship with your dr.
please know again this is jmo and the decision has to be yours. again i think its great your brother cares so much. but he has to maintain control not only to not tick off your dr but more importantly so as not to stress you out more because that will increase your rsd pain.
i hope that once he is well educated on the realities of rsd he can help you by being there for support when you see you dr for follow ups. i hope all goes well no matter what you decide for you and your brother

Your poor sweet brother! If only Love and money could fix the problem!

I think your doctor's appointment should be just for you. Your time with him is about your care and your care relationship with him is new. I would ask him at the next appointment if you can schedule time with him and your family for treatment planning, family education, etc. You want to keep him in the loop on this and not blindside him. Concerns that your appointment will get hijacked are legitimate. It WILL.

Is your brother open to looking at research? There is a lot of great academic info out there from major research centers that might help him understand this. I know for some (self included ) having the science behind something goes a long way.

You must be exhausted after that phone call. I am glad you have so much support and love around you. I am sure there were things said that were upsetting but it sounds like your brother is so desperate for you to be better and not handling it well at all. It just makes one heart break all around.

Sending extra hugs,

I read it over there. Thanks so much for your advice

[QUOTE=RSD ME;1173676]hi still. i think it's really awesome that your brother cares so much for you. but a few things he said like that you're giving in to rsd or that it's not real and all in your head are not true. rsd has physical symptoms as well as constant pain which is proof that it is not all in our heads. i also think that personally if it were me i would get some information about what rsd is and how there is not cure for it and have your brother read it. i would also have him read about the various treatments to manage rsd pain one of which is medication which works for some people like me and occasionally has to be increased because of rsd spread for example.
then once he fully understands what rsd is and how it can be treated then maybe i would consider taking him to a dr appt with you. (this is jmo though). i would want to make sure he is calm at your dr appt and not mouthing off at the dr, because in my experience with drs throughout the almost five years i've had rsd, "they don't like when you mouth off at them" and it might compromise your relationship with your dr.
please know again this is jmo and the decision has to be yours. again i think its great your brother cares so much. but he has to maintain control not only to not tick off your dr but more importantly so as not to stress you out more because that will increase your rsd pain.
i hope that once he is well educated on the realities of rsd he can help you by being there for support when you see you dr for follow ups. i hope all goes well no matter what you decide for you and your brother[

Thank you, My Brother and I are so different. You've given me a lot to consider. I am thankful.

You are very blessed with your beautiful family.
My two cents is that your brother has to understand this is YOUR appointment and he is there for SUPPORT.
So I agree he needs to be educated on CRPS BEFORE he goes so he undertands this is not an in your head disease.
Also, if he has personal pertaining to you and CRPS questions, which seems he would be that nice of a brother, he has to WAIT until you are done with your questions and concerns. Until you are comfortable with the knowledge given to you...maybe give him ONE question. Meaning, after he's up to date as best as he can, he be allowed to ask the doctor ONE question. Something ready before the appointment.
If my family was that caring and wanted to be this involved, this is what I would come up with.
But whatever you all decide please keep us updated......

Thank you for your counsel. I'm especially grateful for the point you made about not blindsiding the Dr. in that way.

IMO Education is the key to understanding RSD / CRPS. Having a limb hurt like yours is one thing, but to understand that the hurting you exhibit is only a symptom of something much more serious, is quite another. This disease's nickname is "The Suicide Disease" for a reason. Why? Because it is a painful difficult disease to deal with! And people do contemplate and even do take their own lives because of how difficult it is to deal with. Further, this neurological diseases can't be cured with a band aid nor with a person's check book! The problem in our society is that we expect instant results in every area of medicine outside of Cancer, which with CRPS / RSD isn't going to happen.

If it were me, I would start to feed your brother with a ton of information on our disease. And I would ask him to please share with me what he learned from whatever i was sending him. I had to do a very similar thing with many people already.

Here is one reference that I used. Feel free to use it if you would like with your brother: The following is a summary from a medical journal, whose reference is listed below the writing. ‘Neurological effects of CRPS, including long term cognitive function and mood changes*may be*incorrectly treated as existing separately from the condition, however new*research will hopefully help raise awareness. It has been shown that neuropsychological deficits are present in 65% of CRPS patients, including deficits in the executive functions, for example planning, organizing, self-awareness, self-regulation and initiation of action, word recall, lexical memory, and conscious memory of events as well as, declarative memory.’

(Marinus, J. et al, (2011)‘Clinical Features and Pathophysiology of Complex Regional Pain Syndrome’,*The Lancet Neurology’, Vol 10, Issue 7, pp.637-648)

There are many others on line.

(PS.. I sent you a P.M.) You are in my prayers. IMO Relationships are a very tough part of having this illness. At least in my case they are. Peace

-Spike-

[QUOTE=Enna70;1173693]You are very blessed with your beautiful family.
My two cents is that your brother has to understand this is YOUR appointment and he is there for SUPPORT.
So I agree he needs to be educated on CRPS BEFORE he goes so he undertands this is not an in your head disease.
Also, if he has personal pertaining to you and CRPS questions, which seems he would be that nice of a brother, he has to WAIT until you are done with your questions and concerns. Until you are comfortable with the knowledge given to you...maybe give him ONE question. Meaning, after he's up to date as best as he can, he be allowed to ask the doctor ONE question. Something ready before the appointment.
If my family was that caring and wanted to be this involved, this is what I would come up with.
But whatever you all decide please keep us updated......:grouphug

Thank you....your response is very kind. I do feel grateful for my family. I feel so much support here, and I am so thankful for it