I have been diagnosed for a decade, but challenged much long. my list of symptoms and diagnosis too long to post. almost 3 years ago, I began having a fully aware movement disorder like myoclonic epilepsy but no name for it.. more recently, severe tremor that can affect entire body for hours. I get speech issues including slurred speech, plus serious cognitive issues with mine.
for anyone else with tremor, hope the following is helpful. some ways to cope.
if you need to better control your hands, wearing one pound wrist weights will help to minimize the shaking. enables you to type, text on your phone, etc.
learn your triggers:
they can include anything that produces an adrenaline rush, include intimate time with your partner, over tired, stress, too much execise, getting sick with something like the flu or a bug, anxiety, medications, allergy, chemical exposure, and more. see if you can find a pattern.
try to see a movement disorder specialist. many of the same symptoms can be seizures, or serious diseases like parkinsons. decide after informed how to help yourself from there.
after a tremor episode, muscles can be sore and over worked. I find soaking in Epsom salts helpful, and the magnesium you absorb helps your muscles a lot.
please if anyone else here is dealing with this, know you are not alone. be good to yourself. add any helps you know of?
Hello. I was just discharged from the hospital today. Similar story with the tremors. It was why I went in. I also had seizure episodes.
Here are my notes from the Doc and hopefully they can provide some help and reassurance you're not alone. They doiagnosed me with PNSE due to my fibromyalgia flare up. Fibro didn't even cross my mind. I've had it for years. Just never did at the time a few days ago when i was sent to the ER by my primary for them.
Diagnosis: I have been diagnosed with Pseudo-seizures. These seizures are commonly associated with anxiety and other similar disorders like PTSD, which is why they were examining the possibility of it being that. In my particular case, the findings indicate it is not due to PTSD or anxiety or any mental type or mood disorder. It is related to the diagnosis of Fibromyalgia. In fibromyalgia, the widespread pain and multiple other systems and body sections effected are not fully understood at the time. However some of the most recent research actually conducted last year now tells us that many patients with fibromyalgia suffer from a type of pseudo seizure called PNES. PNES is a Psychogenic Non-epileptic Seizure. This type of seizure occurs generally as a manifestation of psychological stress. These seizures will look identical to a tonic-clonic (also called Myoclonic) seizure with flailing, choking, unresponsiveness, etc. They may also be in the form of what looks like Absence seizures. In theses, a person may appear to be staring off into the distance, and temporary loss of attention and trouble recalling information for some time after it has passed. Short term memory is highly effected.
If a Pseudo-seizure were caused by a stressing event or by something such as anxiety or PTSD, it is classified under Somatoform Disorder PNES.
However, in other forms of PNES, it is found that the event was not actually brought on by a somatoform disorder idealization or lack of coping skills or life events, etc.
These other forms of PNES are brought on by the body's habit to compensate and to endure daily life when one has a chronic illness. These are unconscious non intentional responses of the body's psychological centers to the physical stimulus surround them. Recently confirmed within the last year, these PNES seizures are true seizures however not epileptic seizures. They do not harm the brain or its functions. What occurs can be seen especially in fibromyalgia patients.
New research shows that as a fibromyalgia patient reaches their window of tolerance and is experiencing a flare up of symptoms or sudden onset of symptoms (this occurs when there is no traceable way to notice an upcoming flare up), they can often have PNES Seizures. This happens because the body's fight or flight system is seemingly caught off guard or overloaded. The body due to wide spread pain overload as well as overload of other multiple symptoms that come with fibromyalgia, reacts in a manifestation of PNES.
In all of these patients it will be found that EEG, MRI, CT, Blood work, and all other vital signs are safe if not exceptional. However, they still have seizure episodes classified as PNES seizures.
It is now found that patients with widespread pain without a diagnosis of fibromyalgia are found to have a 75% chance of having PNES seizure events. It is also found that patients who have been diagnosed with fibromyalgia have a 99% chance of having these events rather often.
Below is the summary of the study that had been completed:
Benbadis and colleagues examined the relationship between chronic pain or fibromyalgia and psychogenic seizures. They designated two groups: (1) patients who had been diagnosed with fibrolyalgia or chronic pain, and (2) patients who had a seizure during their visit, either in the waiting room or in the examining room. Benbadis et al. derived their data from the records of all patients evaluated over 5 years in a single epilepsy clinic for refractory seizures as well as through EEG/video monitoring. In the first group they identified 28 patients with a diagnosis of fibromyalgia and 8 with a diagnosis of chronic pain. After EEG/video monitoring 27 were diagnosed with PNES. In the second group they identified 13 patients who had a “seizure” during their clinic visit. after EEG/video monitoring, 10 were diagnosed with PNES. “These findings suggest that a history of fibromyalgia or chronic pain” and the occurrence of an episode during the visit both have a high predictive value (75% each) and a very high specificity (99%) for an eventual diagnosis of PNES,” said Benbadis. He speculates that the association between chronic pain and PNES may be “because chronic discomfort can cause psychological distress, which may result in PNES.”
You can find more info on PubMed too about the connection between these types of seizures and Fibro :) It exists among quite a few fibro patients. Not all, but we are 75% more likey to have them.
Hi! I have PNES and fibro. Psoriatic arthritis too. I get so frustrated when they flare. Mine are pain related. I can’t seem to get rid of these darn things even with a year of therapy. It gets worse with pain flares. Anyone have any ideas???
YES! Thank you! I had these tremors and they were significant last year before my neck surgery. (My bone spurs had wrapped around my spinal cord.) Pain overload seems right on …plus trying to keep my job! Also you may find interesting that I had a bad reaction to Lyica and had tremors so so bad it made my chair shake and I had to hang on to my desk to make them stop even momentarily. Thanks for confirming I’m not crazy!