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Anyone else suffering from Gastroparesis or other stomach conditions with FND?

GLS16 profile image
3 Replies

Hello,

I was diagnosed last year with gastroparesis, which is a where your stomach becomes paralyzed. It is a very debilitating condition in itself. I have seen two research hospitals, including the Mayo Clinic in Florida. Neither of the specialists could tell me why I have gastroparesis, besides a glitch in my Autonomic nervous system. Im currently taking 25 MG of amitriptyline, which is a life changer as far as pain, being able to eat and generally improving life overall.

Roughly 9 months after being diagnosed with GP, I suffered a kick in the femur by a horse. I had a severe contusion, but no break. My symptoms started roughly 2 weeks into PT. The leg was painful as to be expected, but shaking and tremors in the leg were at first dismissed as muscle fatigue. After having more episodes of leg tremors in the affected leg, I was sent for MRIs on my lumbar, right hip and femur. I saw a neurologist in July, who conducted a emg, which was normal and wrote the report up as FND.

The leg is mildly better in baring weight, but severe tremors are induced by to much activity. I have been experiencing temperature changes in my leg, moderate random swelling and pain from my hip to the location of the injury.

I know CRPS 1 has similar symptoms as FND at times. Has anyone experienced both FND and CRPS or been misdiagnosed with FND instead of CRPS? I question FND a bit because I have several CRPS symptoms except for extreme pain. Thou, the amitriptyline has improved my severe stomach pain so much, my leg may in fact hurt far worst than what I'm currently experiencing.

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cathys20 profile image
cathys20

Oh my goodness, Why in the world would they give you a fnd diagnosis?? You suffered a head trauma, 2 weeks later all heck breaks out. I don't know when this is going to stop for all of you with misdiagnosis. I will say it till I am blue in the face, there may be those on here who have a conversions disorder, then that is what it is, not FND. But the most have a yet undiagnosed movement disorder. I wonder if we will ever see it in the medical community. But your post has so frustrated me for you, that I think I am going to call the dystonia society and have them look into this as possibly changing this to a new diagnosed movement disorder. I have spoke with them in the past. I have paroxysmal dystonia, it was the last of the dystonias to be diagnosed and it took such a long time to be recognized. I am so very sorry for you.

On another note, I have been having the terrible stomach pain that you mention for 2 months now, had every test imaginable except for motility tests, which is what you have a motility disorder. Thankfully I have great medical care, and my DR. listened to me yesterday when I begged to have motility testing done. I have the first this morning and one on Friday, am praying for the best. The pain has been unbearable, my heart is with you on this. God Bless and will pray for a new look at your condition. Cathy :-)

GLS16 profile image
GLS16 in reply tocathys20

Hi Cathy,

I lucky did not in fact suffer a concussion, but a (contusion) or severe bone bruise. I have done a ton of research and a lot of times FND and CRPS are started by a break, fall or physical injury. This statement would apply to me...

Thou, the way I see it is that I obviously have a (nervous system disfunction), as my gastroparesis is idopathic or (medically unexplained). At the time I had an extremely high stress job, both physically and mentally draining. Along with other serious life stressors thrown on top. All this "body stress" exacerbated my gastroparesis to the point of seeking a diagnosis!

Following the kick, I started to develop these tremors, myoclonus, chorea and other abnormal movements in severe "episodes" lasting hours. Some days I can walk and pain comes and goes, other days my leg feels completely distant and uncontrollable. Take in to all consideration that I'm a young, very healthy and physically fit female, prior to the GP diagnosis...

Anyways,

My GP was indeed diagnosed with a gastric emptying study. A word of advice thou! IF you think it's in fact a motility problem your having, make sure that your symptoms are present at the time of the study! I have read that several people go undiagnosed because sometimes your stomach does in fact work. By the time Shands saw me, I was passed that stage. It if I ate anything, I paid a big price!

I'm very interested to hear how others with FND life style's were preluding to symptoms and diagnosis?

Starrynightz profile image
Starrynightz

I would be careful with the amitriptyline, a lot of psych meds can cause gastroparesis. Sometimes taking a tablespoon of apple cider vinegar each day will help keep the gut moving, small frequent meals, avoid things difficult to digest like red meats and leafy vegetables, stay hydrated because your body cannot pull water to digest if you are eating too much fiber and no water is available. Hope that is helpful.

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