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Functional Neurological Disorder - FND Hope

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Disabled/Recently Diagnosed with Functional Movement Disorder

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I am 42. I live with Fibromyalgia, severe mental health issues, and was recently diagnosed with functional movement disorder. I need support. Right now, I feel alone and scared. All of this is so overwhelming. I have been getting stress headaches every day for a week. The stress only makes the movements worse. I will be hospitalized in the near future to learn how to cope with my recent diagnosis.

I tried to reach out to my church and no one will return my calls. This makes me feel sad and hurt. I am crying a lot. I might have to switch churches if I don't get any support. I love my church right now. I met some good friends. But the pastor hasn't gotten in touch with me. I left three messages.

I have been on disability since 2004. If anyone has questions about disability, please feel free to ask. It is not an easy process. I might be able to help.

I am in counseling and will go through a mental health program starting Sept. 11, 2017. That should help a lot. The program is three days a week (Mon. Wed. Friday) from 9:00 AM to 12:00 PM.

I am struggling with finding transportation. I cannot drive due to the movements. Any suggestions would be greatly appreciated. I look forward to getting to know everyone.

Jenn

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Hi Jennloth 1975 so sorry you are feeling very low and alone. It is difficult to accept that you have FND plus all your other problems is not easy to accept the diagnosis. Have you got any friends that you can confide in. Sorry the church did not get back to you as this is an important to you. I know how you feel as I get days like that and I have mental issues as well as FND and other problems, There is a taxis but that works out expensive. I have a mobility scooter that gets me out and about to places that are not far away and gives me independence. Have you got an understanding GP that you can confide in. You can always confide in me if you want to. Have you got an e-mail address if you would like to confide in me. Have you been on the FND site that helps as well. Take one day at a time and do not be to hard on yourself. Take care lots of love and hugs. I am here for you. xx

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Hidden in reply to geordie-girl

Yes, I have an email address. It jennloth1975@gmail.com.

Thank you for your kind words. I have always had a lot going on in my life. But my faith keeps me strong.

My friend Judy and I go to the nursing home once a week and have a prayer service. Judy takes me back and forth. Her husband, John is going to help with transportation. He is taking me to and from my procedure tomorrow.

My husband helps with transportation during his lunch hour.

I think things will fall into place. It just takes a lot getting used to not being able to drive. I miss my independence, but it is nice to meet new people.

I have to take a cab quite a bit, unfortunately. I am looking into hiring someone.

I don't like being dependent on other people, but I need the help. I hope that I will be able to drive again.

Sometime in the future, I am going to a hospital in Louisville, Kentucky to learn how to deal with my involuntary movements. They are supposed to call me. I will be in the hospital five days.

I currently live in Fort Wayne, IN. It is a medium sized city. I miss living in Indianapolis. There was a lot more support.

I have been married 16 years. We do not have any children. I have a little dog. He is a Dachshund named BallPark (after BallPark hot dogs) LOL.

My husband is my best friend.

I look forward to getting to know you.

God bless you

Jenn,

You are not alone. I know it feels like it. I also have both fibro and fnd and both can feel very overwhelming. Where are you located?

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Hidden in reply to Calyngrace

I live in Fort Wayne, IN. I was diagnosed with Fibro in 2001. I just got my diagnosis of FND. I may also have Parkinson's Disease. I will find out 9-8-17 one way or another.

I think the worst part is losing my independence. I used to just go to the mall and walk around. I have a little dog who gets me out of the house. He is 13. I got him when he was just 8 weeks old.

Fibro causes a lot of pain and fatigue. Some days it is hard just to get out of bed. I have learned not to stay in bed because that only makes the pain worse. Some days, I just sit in the recliner and watch TV or read. It hurts too much to do more than that. And of course, I have to walk my dog.

Fibro also causes memory loss. My FND causes memory loss. Not fun!

Sometimes I have to describe words to my husband. I have trouble remembering words. I have to write everything down. Otherwise I forget.

I see a pain specialist. He has me on a good medication. I take Ultram for the pain. I have tried so many different things. Ultram seems to help the most.

I get cortisone injections. Tomorrow, I am having an ablation, that is where the doctor burns the nerves that cause my back pain. I am really nervous about that. I have never had it done before.

I am on disability. Most people are understanding.

I look forward to getting to know you.

Good Morning, I hear what you are saying very clearly, the diagnosis itself is scarey, you have more than one thing going on, and your life seems out of control. It makes me sad to hear you reached out to your church and no takers yet, you need the body of Christ to surround you and support you. One thing I always taught, i taught both childrens ministries and ladies discipleship classes for many years, its that we must realize humans are just that, we are selfish at times by nature, and almost always we will let each other down in one way of another, Fortunately for us God never lets us down, He is our one true source of never failing love. If you love your church and new friends, excuse their behavior, it may not be a good time to change anything else. We all have thing going on in our lives, many that no one knows, we can be very private about personal matters as well by nature. :-) Give a call again, perhaps talk to the Pastor personally and be honest with him. Prayerfully there is a home fellowship group already in place in your church who makes meals or drives people to appointments if necessary. You can email me anytime if you just need to talk. On days that I am able I can back to you quickly, if not well it could take a short while. I like the rest of the world have much going in in my life, and my health like all of us here takes its toll. My Sjogrens disease is eating me up pretty good right now, but my fnd is as good as it has been in many months, so am so very thankful for that. I have 25 grandchildren, a grandson who lives with us, and my hubby, so like so many life goes on, its an adventure filled with hills and valleys. Sending prayers to you and all this day. God bless, Cathy grandmas16@gmail.com.

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Hidden in reply to cathys20

Thank you for your email and the kind words. Yes, the diagnosis is scary. I feel out of control. Sometimes my entire body twitches and jerks. That is terrifying. I just want it to stop.

Stress makes things worse. I am trying not to dwell on things, but sometimes it is right in your face. I feel like everyone is looking at me when I start having involuntary movements.

My husband and I went out to dinner, and they started. I am not sure if anyone noticed or not, but I felt like everyone was looking at me.

I get a lot of tremors. It is hard to sign my name. I used to write very clearly. Now I just scribble.

I get a lot of headaches. I also have memory loss. I am learning how to describe words. I have memory loss from my Fibromyalgia as well.

I also started stuttering. I am not used to that. I try to talk and cannot get the words out. I just have to take a deep breath and count to ten in my head. Usually I can regain my speech but not always.

My husband has been so kind and supportive. He is my best friend. We have been married 16 years. We do not have any children. I had to have a hysterectomy at a very young age due to severe Endometriosis.

My husband is a computer programmer. He works long hours. He works from 8:00 am to 6:00 pm Monday-Friday. He gets home around 6:30 pm.

Sometimes he has to work even longer than that. He has had to go into work on Saturday a couple of times.

Two days ago, he didn't get home until 8:00 pm.

It is hard for me to cook, but I do my best. We eat a lot of pizza and TV dinners. I get a frozen pizza called California Kitchen. It is actually really good.

Growing up, my mom always cooked. She was a wonderful cook. Everything was homemade. She made the best pies. I wish I could cook like her.

She never followed a recipe. Everything was done by taste. I would see her add this or that. It was always delicious. I need to follow a recipe exactly or it is terrible.

I tried making homemade soup before from a weight watchers recipe. My husband and I couldn't eat it. Weight Watchers has complicated recipes.

Sometimes it is hard for me to walk. I get weak and fall. Thankfully, I have never injured myself. But it still is scary.

Congratulations on all of your kids and grandkids. My mother-in-law has 35 grandkids and 12 great grandkids. My husband is the youngest of nine.

Looking forward to getting to know you,

Jenn

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