Hello everyone, I want to be jumping up and down with joy right now. I did yesterday for a couple hours. Now I’m confused? I saw a neurologist at Rush University in Chicago that specializes in Stiff Person’s Syndrome. Even though my bloodwork for GAD 65 AB is off the charts, the neurologist said my actual neurological exam did not indicate that I have SPS. I, for sure, have fibromyalgia. But now I have another diagnosis. Functional Neurological Disorder. You would think I would be happy, right? If you look this up, it can be considered a rare disease. The doctor said that because I have a huge history of trauma, my body is dealing with it in a physical way. Great. Over the year, physically I’ve been declining. I walk like the tin man. I have to use an electric cart in a grocery store and so on… The treatment for this new diagnosis is physical therapy with someone who knows about FND and therapy. I’m in therapy. To be quite honest, I’d like to say. F-Ck it all!!! I’m angry at my body. With FND, your body does things without your control. Why am I so angry? Because I’ve worked fricking hard to overcome years and years and years of trauma. I finally am seeing that having a good life may be possible despite nightmares, flashbacks and…whatever. Now it feels like my body is taking over, my body. Great! The neurologist said that I need to start physical therapy soon before it becomes irreversible. I have 10 physical therapy visits until January 1st. Ahhhhhhhhhhhhhhh! The doctor said that about 3% of people with high GAD 65 AB don’t have SPS. I’m sorry for venting. I’m so frustrated! I want to fix this! Yes, I’m glad I don’t have a disease that would turn my body into a lawn stature. But my fricking body is still taking control of my life. Again, sorry for venting.
It’s definitely mixed news here. The good news is that it sounds as though this isn’t progressive in the same way that Stiff person’s syndrome is. The bad news is that it’s still a crappy diagnosis. I’m glad that physical therapy will be helpful, although that is very limited. I would encourage you to request exercises to complete on your own, and to use your actual visits as a way to check in, and modify exercises.
Along with this, you mentioned the connection to trauma. If you haven’t already worked with a therapist, I would encourage you to do so. Whether the primary focus is dealing with a new diagnosis, or directly addressing the trauma, it can only be useful to you.
I’m really sorry that you’re dealing with all of this. It’s just really a lot to handle. I’m glad that you’re able to come here and look for support.
Sharon from ModSupport
Thank you Sharon.
Glad you don’t have SBS and…buy boy can I relate to your mind body… I have ADHD and my mind wants to go but my body says fun…k. You,we are going through a move my daughter moved out still has things here and there and we are getting ready to sell…Moving south…cold weather is killing me…
New to the group.
Hi Sillydolphine! Did you find a state that was more conducive for fibromyalgia pain? I would be interested in knowing what state, if you feel comfortable telling me. I want to move, at some point, to warmer weather.
Oh - yeah! I sometimes think I shd vent more
Whatever our docs say what they think it might come from - it’s a guess.
I decide myself as it suits me. My life, my body, my sickness, my self-care.
Sometimes I say my fibro may come from all the stress & trauma in my life, even tho I got a handle on it all.
Sometimes I say no-one knows, loads of reasons, maybe all that and more.
I was never as healthy, inside and out, as when fibro started up slowly.
But maybe I didn’t listen to my body enough,
I thought if I’m apparently healthy I can keep what I do at the limit.
Now fibro is telling me to listen in detail.
And telling me a new limit zone - to pace, change, learn new movements.
Since I haven’t the option of being able to tolerate meds, I have to listen,
there is no other way. Apart from flunking it. No cheating.
Long hard slog, but successes bit by bit…
Wow! I just re read my post. I do not get that angry very often. And I never yell or scream at anyone ever. But I could tell my “ post” had yelling and screaming all over it. With fibromyalgia, I just kind of go with the flow. I don’t fight it or it will make it worse. If anyone reads this and has been diagnosed with functional neurological disorder, please share what has been helpful to you. Thanks!
We just hear frustration freedom, thats ok…this is a good place to put it❤️
Wow, sounds like need personal pity party ! My mother often said once getting troubling news or a bad day ect. That you should take time to cuss and discuss, gripe and moan, scream or cry if that’s what your feeling then you must motivate yourself to move forward, make peace , create a plan of action to carry on . I would definitely recommend a counselor I see someone who specializes in chronic illnesses. I’ve had a long-standing appointment every Friday for the last 2 years and I’ve found it beneficial. Vent all you need to, we’re here for you.
Thank you! I do see a therapist. It has helped me a lot. I’m feeling better and am not really angry anymore. I plan on seeing a physical therapist that specializes in neurological disorders. Just waiting to see if insurance will cover it.
I understand the frustration you have dealt with - not having a clear diagnosis and being uncertain of the future. I get how frustrating it can be when even though you feel lucky to not have one disorder, it doesn’t change the pain you are currently in. I hope that physical therapy is helpful and you are able to get some peace with your new diagnosis. I hope you are able to find a course of treatment that helps you. I’m sorry that you have to deal with all this, but I am glad you are here for support.
I totally understand! After suffering for 10years with fibromyalgia and Seeing 10 drs. I’m now told I have poly myalgia rheumatic a. After 3 days on prednisone I have no pain! Really? I suffered almost 4 years of not being able to do anything, I now find I basically have lost 4 years of my active life
If you can’t vent here, where can you vent? That is what we are here for.
Horrible! I have another friend with that. But the good news is that he manages to keep it at bay with the teensiest dose of meds. Stick with your rheumatologist and hope for the best! This game’s not even close to being over.
Laxlady, WOW! I’m sure we all have tried to diagnose ourselves because fibromyalgia manifests itself in so many ways. But Laxlady, I looked up polymyalgia rheumatica and almost fell off my chair. I could be completely wrong but maybe I have this. I literally woke up on July 4th 2018 in horrible pain. Prior to that day, pain was not an issue. Now, I wake up every morning in pain. My joints ache. My muscles in my quadriceps feel like they are pulling apart when I get up from a sitting position or walk. But here’s something else. In the past few months, I’ve been hearing my heartbeat in my right ear when I’m reclining in a chair. But…my temples and scalp hurt like crazy. I can feel the arteries by my temples and they ache. When I use my fingers to massage my temples, it is so painful I can hardly stand it. My scalp hurts. I’m going on day 5 waking up with my joints throbbing and my wrists and hands throbbing and aching. It’s really weird. Ahhhh! My jaw hurts. My eyeballs hurt sometimes. I’ve had my cRP and ANA blood test draw fairly often. They are always fine. When I take prednisone, the pain everywhere in my body goes away. I want ANY of my doctors to look into this. You can have normal blood tests and still have PMR!
Hello Freedom - I’ve been having a bad couple of months and just now “remembered” ben’s friends. I have not posted for a long time - I am going downhill also, and I want to tell you that this is a place you SHOULD be. All of us here have a variety of chronic pains and scarey things. I am so sorry for the pain you are in. BE sure to share with your new acquaintance in the apt across the street. He sounds gentle. My oldest daughter died at 33 - parents and siblings have died. All i have is one daughter and my cat. Cat just loves me. Daughter says Mom, think about something else so you don’t hurt. She cares, but does NOT understand. When you say you can hear your heartbeat, when I have weird feelings, I sit in my recliner and say everything out loud, every pain, every worry, every hope. I even say I am not afraid of death, but i am scared of all this pain and the things i can no longer do. Sometimes I feel myself being very angry, but so what - Cat doesnt scold me.******
I have no advice or solutions except that I know you are welcome here always. Carolyn in Nebraska.
Hi Carolyn, it’s been quite a while since even looking at any posts. I’m sad. I’m crying a lot. I’m alone. The guy I dated for 3 weeks was super kind and caring. But he looked very similar to a man who severely abused me when I was a young teenager. I couldn’t get past his looks. I didn’t tell him that’s why I couldn’t date him anymore. I made sure he knew it had nothing to do with him, that I thought he was sweet and respectful. But I wasn’t ready to get into a serious relationship. I’m sorry you’ve been declining too. Losing a child at 33 must have been painful. My heart goes out to you.
Hi Freedom, after now hearing of 2 others on another fibro-forum with FND / muscle twitching / leg jerking I wanted to come back to you on this - how has it developed??
One of them is trying GABA soon, which I think is a good idea - what about you, did you ever consider trying it? - I’ve just seen I’d recommended doing that already…