I just joined today. I was diagnosed with FND over the summer after years of no results and “perfectly normal” testing.
I’ve had symptoms essentially my whole life. Tremors that couldn’t be explained, fatigue that was crippling, migraines, whole body weakness, numbness that began in my feet and has progressed.
More recently (last two years) my chest pain has become a daily symptom (it feels tight, heavy, sharp at times, causing me to not be able to take full breaths) and an all over body pain that feels like my skin is being rubbed by sand paper and my skin hurts from any contact (fabric, touch, air). I’m nauseous every day, I have not had a headache free day in 10 months and migraines 3-5 times a week. I have fallen a few times in the last three months and my eyes have become blurry and very light sensitive.
My fatigue and weakness has left me unable to function many days. I have a cane to assist me in walking and today it was recommended I get a transit chair to aid when I am out with my family.
I am thankful I found this community as this has become very isolating. When people ask what’s wrong it is truly hard to explain, ya know?
I have four very active kids and it is so hard to maintain any sense of normal life with them but I try.
Thanks for reading all of this, if you survived my ramblings til the end. I really look forward to talking with you all and having a supportive environment while I manage life.
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Mama_Bear_To_4
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Hi your story Very similar to my daughter she was diagnosed in the summer aswell after all test came back that her brain and nervous system is normal she is 17 she has functional seizures and has body paralysis often she was diagnosed with FND and CFS as they say they can go hand in hand her life has completely turned upside down since it all started in January she also has the chest pain and hard to breathe like you do and it can become very scary at times she also gets a lot of electrical pain in her head and the pain all over her body and at times has to use a wheelchair to get around outside as her legs just won't Carrie her she was given amatriptlin and pregabalin they kinda do help but as you will no better then me it never goes away I watch her everyday struggle with daily life and she so badly wants to go back to college and be with her friends but she can't do those things for now and not sure if she ever will get to as these disorders are so crippling at times.
I am so sorry she is having to deal with all of this. It really is life changing and it’s so difficult to adjust every day activities to be manageable.
I know it’s hard to watch her struggle. My husband has such a hard time watching me on my bad bad days. The best thing you can do is be there for her. Ask what she needs and just respect the fact that sometimes what helped yesterday may not help today. 😞
Thanks so much for writing back your right she has days when she's really bad and there is not much you can do apart from be there is there anything you do to help you sometimes that I might be able to do to help my daughter
Like today I woke up exhausted and sore, but I was able to get up with my kids and such. But in the last hour I’ve become confined to my chair. My chest is very heavy, my left leg is in so much pain I can’t move it, I’m freezing but sweating and I feel so nauseous.
It changes so quickly and nothing likely help calm it down.
I had tried cbd oil and it did provide some relief. If I took it on a regular interval I was more able to function and during a flare up it helped to settle my pain a bit. I actually need to go get more of it cause I’m out.
But even that was not a guarantee to help me get through.
I rest. A lot. I don’t over do it on my better days. But I don’t have any sure tricks to share 😞 I wish I did
I too have Multiple Symptoms and the chronic fatigue and severe lack of energy certainly holds you back in life. I developed Pruritus and had that very severe for 5 months (it is a constant feeling that needles are pricking your skin, and all you do is itch your skin away) I felt like jumping out the window. I too feel very nauseous every day, several times a day and it has become worst since i had some weird episodes with my eyesight back at the beginning of September, and since i have had constant headaches virtually 24/7, also since then i have found i really am getting much more forgetful, confused and zoned out. I have had tremors for 2 years, daily, several times a day/night and they have gradually changed in their intensity, even making my mattress vocal when i am in bed, or if i am on the sofa it feels like there is an earthquake. I too get chest pain (it feels like a heart attack) but mine is sporadic. I too have severe disabling pain throughout the entire body, can lose the use of whatever part/limb of the body it chooses. I also have drop attacks and am decked to my knees, or if in the arm drop whatever i am holding. I also now have Tinnitus 24/7, it use to be very sporadic. Since my weird eyesight episodes, i have found i feel much more faint than usual, sometimes daily. I too have lots of issues with walking, also on 4 occasions i could not move and had to be rescued, and together with all the symptoms (plus others i also have but haven't listed) i am virtually housebound.
It is extremely isolating, because a lot of the symptoms are internal, i also usually feel weird and it is a feeling i cannot explain, but you just don't feel well at anytime. Unfortunately, because people cannot see any of this, and how it has a profound effect on your daily life, also "You look well" (thank god) they don't realise what a real struggle it is just doing simple, normal things.
I am so glad that i signed up to this site, but whilst it doesn't solve your problems, it is such a small comfort that you are not alone.
I have to say the “but you don’t look sick” is so exhausting to hear. It’s also so hard cause like you said you don’t feel well at any time and I find myself still attempting to do things with my kids and family and people don’t understand.
I’m sorry you have to experience these issues, but I too am glad I found this community. It does help knowing I have people to talk to
Welcome. Thank you for sharing with us. It is definitely nice to be able to turn to people that get it. Thing I've learned the most in about 7ish years of this: don't underestimate yourself, don't underestimate your kids, don't let pride get in the way, advocate for yourself when doctors swear up and down it has to be your depression, and enjoy your good days not like they are your last but like you never really understood what good was before.
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