Finally diagnosed with FND and CRPS.

[GLS16]

After 7 months of craziness, Mayo Clinic of Florida has finally discovered that I have FND and the on set of chronic regional pain syndrome.

I was diagnosed with gastroparesis last June. Which is also a misunderstood neuro disfunction, causing poor stomach motility. This was ruled as autonomic nervous system disfunction.

I'm curious if anyone else is suffering from a combination of neuro functional disorders? It all seems to coincidental to me...

[Lawley3]

Hi,

I was also wondering how many others have been diagnosed with autonomic nervous system disorders too.

I have been told by 3rd neurologist that I have fnd but this time she also diagnosed post virul illness and orthostatic intolerance, postural hypotension.

[Anonymous- in reply to Lawley3]

Hi GLS16 and Lawley3,

I too wonder if what is being diagnosed as FND is actually a form of dysautonomia. Dysautonomia involves the Central Nervous System and the symptoms of FND seem certainly related to the nervous system. I also wonder if FND is a "go to" diagnosis when doctors don't have an explanation. I have symptoms of gastroparesis and orthostatic intolerance/postural hypotension. This is mixed in with severe high and low blood pressure. I believe all the symptoms fall under the autonomic system that is not correctly functioning. So, to answer your question, yes I believe, dysautonomia is very much involved.

Question: Do either of you have moments in which your brain does not work properly? More specifically, after standing and taking about 7-8 steps, I feel that something is happening with the circulation in my brain, leaving me unable to walk and talk. My brain feels extremely unclear and I lose coordination. After a few minutes, the circulation seems to "re-balance" itself and I am alright, but tired. I'm always tired. It seems as if my brain is not getting enough oxygen. Innately, I take deep breaths and put my head downward (on a counter-top or wall) and wait for the moment to pass. Most disturbingly is that it happens many times (10-15) throughout the day! This has got to be having adverse impact on the brain/body long-term. Yet, no doctor has been able to help me. I am so frustrated and weary of all this! I just want to understand what is happening and feel better! Helpful thoughts are welcomed.

[Lawley3 in reply to Anonymous-]

Oh god yes!! I couldn't have put it any better myself! I have exactly these symptoms! It seems as soon as I stand and start walking everything goes wrong! I've always said it's like not enough oxygen getting up or circulation going wrong, I too have tried bending my head down to see if it helps. My balance goes everything feels off wrong it feels hard to move and my Co ordination feels wrong!

[Anonymous- in reply to Lawley3]

Lawley3,

Do you mind sharing more details of your symptoms? I don't know anyone personally with so many of the symptoms that I have. It is very hard to live this way each day. I also work and am raising a child, but struggling daily with these symptoms makes it very hard. Yet, I have no choice.

When those moments occur after standing, do you "physically" feel something happening in your brain? I can actually feel that something physically wrong is occurring in my brain. It feels like the blood flow through my entire brain is "draining", and is very uncomfortable. It is an actual physical sensation. The "draining" feeling lasts for only a few seconds, but long enough that it significantly impairs my ability to think. In fact, when the moments first begin, I can't think at all - it's as if my brain stops. It's as close to being unconscious as possible, without be so. The best analogy is like a group of electrical signals that are crashing together - nothing is working in my brain. I'm just there, but I have no control over anything and can not respond to anything, each time it begins happening. My coordination is such that I can't stand up straight nor walk, and can not talk at all to eventually a few slurred words. Over the years, I've learned to put my head down and lean (no strength) on something (counter top, wall, table, top of furniture pieces), until I can regain the ability to think. I do not pass out on the floor (although I have a few times in years past), but, again, I'm as close to passing out as possible, without doing so. Because this happens repeatedly every day, I'm very concerned about what may be happening to my brain/body long-term.

What do you mean by "diagnosed with post viral illness"? What is your average low blood pressure? Have you been able to obtain a blood pressure reading while having such moments? Can you blood pressure immediately plummet?

Thanks for your quick reply and information. It's interesting and helpful.

[Lawley3 in reply to Anonymous-]

Hi sorry about the late reply. Doctors have witnessed my blood pressure falling when standing but not enough to be causing all these symptoms. The last neurologist I saw back in June diagnosed fnd alongside a post virul illness. All my symptoms started after I picked up a virus 2 years ago during my pregnancy. I have many symptoms a lot affects my left side, I get a weakness heaviness down the left side of my body from head to toe along with a burning sensation. I also get random tingling numbness anywhere on my body. My left leg tingles when I walk. My left arm is heavy and I struggle to hold it up I did completely lose the use in it but it has recovered since. My balance feels perminantly off, my eyes are blurred. I struggle to stand and walk far as this triggers my symptoms, I get the exact head thing you describe. Dreadful chest heaviness skipped beats breathlessness and the doctors don't know why. I could go on and on!

[GLS16 in reply to Anonymous-]

Hi Lawley and Anonymous,

It's interesting that both of you seem to have other autonomic disfunctions too, specifically orthostatic intolerance. I don't have this issue, but experience red temperature increased flushing rashes on my face. My ears turn bright red, neck and chest will also have a blotchy rash too. Most of time this happens when I'm hot, exercising or put into a slightly stress evaluated situation. (heart rate up = rash). I have had this my whole life, now in my late twenties, I only notice it when people ask about it. No doctor has been able to explain why this happens, I think it has to do with a sympathetic nervous system disfunction at this point... I too, struggle with body fatigue.

Anonymous, I don't experience dizziness or slow cognition when standing. Tho, I have always experienced severe light sensitivity.

Do you take meds? The brain fog issue after standing could be a med sensitivity!

I totally agree that FND is misunderstood on several levels. Some drs may grasp the concept, but there is little evidence researched on what truly happens in fnd or how to effectively treat fnd.

[Anonymous- in reply to GLS16]

Hi GLS16,

Thanks for your reply. I take blood pressure medication (Coreg). I know that medications can cause numerous side effects. However, I feel that the symptoms I'm experiencing are not due to side effects. I've had these same symptoms for many years, while having been on several different medications for blood pressure. When I have such moments, there is no spinning or dizziness, but rather inability to think, with a physical, generalized "draining" sensation in my head. I can feel the sensation in my head. It cognitively impairs me enough that I can't walk or talk, and have to wait it out until I rebound back. I am sensitive to light, but that's because I also have bilateral Aides Tonic Pupil (for the past 35 years). I'm not 56. I also have severe flushing red all over my face, necks arms, and lower legs when my blood pressure is high, but I don't have rashes. Fatigue is constant, but I have no choice but to push through. I wish I had real answers from the medical community.

[Loopylou100 in reply to Lawley3]

Hi Lawley,

I'm pretty new to this sight but my symptoms are similar to yours. Have you been cleared for MS? I just wondered because I'm searching for answers too, mine started after problems with pregnancy I have a post up at the mo asking others if they have similiar symptoms and what they did etc. I had an mri a year ago and it was all clear but the band round the chest is classic ms. I just wondered what your doctor said have you asked him about this? How are you feeling now?

[Lawley3 in reply to Loopylou100]

Hi

So sorry about the late reply.

I'm sorry to hear you are still suffering with your symptoms, I have given up looking for answers as I don't have the time or energy to fight the doctors anymore.

My symptoms still persist after 2 years. They are always there but wax and wane in severity.

I have had 2 brain mri scans which were both clear. I haven't had any other tests but all neurologists have confirmed fnd and post virul illness so whether or not that is a bit like chronic fatigue/me I don't know.

Anyway if you come up with any answers or ever need to chat feel free to message me.

Best wishes

Louise x

[shirshir718]

Hi, I was diagnosed with FND last week. At the same time I have gastric signs such as dyspepsia and tachycardia sometimes if I change positions too quickly. My FND symptoms is generally weakness in my limbs, especially the right leg. when I have a flare I get nausea (can’t eat), increased weakness in both legs and general malaise. Other times the flare would involve heart palpitation. I understand how everyone feels here!