Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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Update: PM&R, etc.

Discussion in 'General ME/CFS Discussion' started by lgibson2017, Feb 22, 2017.

  1. lgibson2017

    lgibson2017

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    Hey, guys! There's been a bunch of crap happening lately so I figured I owed an update.

    I saw PM&R yesterday and got some interesting news: the ball part of my hip (the part that goes in the socket) is oval instead of round, which might be causing a lot of my hip pain and problems. Also the doctor suspects fibromyalgia on top of ME AND she thinks I might have spinal stenosis, which is when the hole that my spinal cord goes through is too narrow and is squeezing my spinal cord, which would explain the problems with numbess, etc. in my legs.

    I got X-rays of my hips and back yesterday and will have an MRI of my lower spine soon, then I will start light physical therapy in a pool barring any problems in the test results.

    She was also concerned about my hamstrings being extremely tight. Here I thought they were just tight because I don't stretch but turns out constantly ridiculously tight hamstrings is a ~problem~

    My hair has been falling out in big, BIG clumps recently, but it's doing better now that I've stopped putting my hair up every day and I've started co-washing (washing my hair with just conditioner instead of shampoo). I'm gonna try some vitamins, as well.

    Also, I did a trial run of gabapentin/neurontin (a neuropathy medication) and it helped SO MUCH. I've also been on forearm/elbow crutches for about a week now. They help with the pain in some places but kinda transfer the pain to my shoulders, so it's a trade-off. Overall they help add stability so I continue to use them.

    Uhhhh.....I think that's it? I had one of my "episodes" yesterday, which I might post a topic about. They look like seizures, feel like seizures, seem like seizures, but I'm conscious the whole time so I don't think they are seizures.



    And I think that's about everything....

    Thanks,

    Lauren
     
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  2. Mohawk1995

    Mohawk1995 Senior Member

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    Have you ever been told you have or heard of Non-Epileptic Seizures? Before going further, I will qualify this by saying that there is a school of thought that thinks the majority of these are psychogenic. While I believe there can be psychogenic factors contributing to NES in some cases, I believe whole heartedly that this is a Neuro-physiological phenomenon and can be the result of physiological stresses and/or emotional (psychological) stresses on the body.

    So hear me when I say that most ME sufferers have more than enough disease related physiological stresses placed on their bodies to create this type of response. In addition the impact of secondary emotional stresses that are created by suffering with this disease would naturally and quite expectedly impact this phenomenon. Not an emotional weakness or primary psychological reason needed.

    The definition of Non-Epileptic Seizures is in the title itself. Seizure activity or like activity without changes on EEG. I have witnessed these first hand in my work as a Physical Therapist. The mechanism is not well understood, but they are more common than you would think. There is actually evidence to suggest some people who are diagnosed with Epilepsy actually fit into this category. Not surprising Epileptic based treatment doesn't help for the most part.

    If they are secondary to the changes that ME has made in your body, treating the ME and protecting yourself from harm during the seizure would probably be your best bet. Would be wise to seek help which you are already doing to an extent, but be wary of someone who wants to pin it all on psychogenic factors.
     
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  3. Valentijn

    Valentijn Senior Member

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    Why? There's no such proof of such factors. In fact, by definition, proof of psychogenic factors can't exist.
     
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  4. Mohawk1995

    Mohawk1995 Senior Member

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    @Valentijn that is why I used the term "believe". Since I as a physical therapist cannot "treat" psychogenic disorders I can speculate on what is contributing. Although to proceed without acknowledging that a person's emotional, psychological and spiritual well being are just as if not more important than their physical well being would be negligent in my opinion.
     
  5. Valentijn

    Valentijn Senior Member

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    You're going beyond speculation when you "believe". To quote something you said recently in another thread:
    In the case of psychosomatic theories, it's especially dangerous to assume. So far they've only been disproven as medical science advances, and have never been confirmed.
    How does your belief in psychosomatic influences help anyone's "emotional, psychological and spiritual well-being"? Surely you can take those into account without making assumptions about the cause of their symptoms.
     
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  6. lgibson2017

    lgibson2017

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    Well, to specify about mine: they have a trigger, usually. Sometimes it's an emotional trigger, like a fight with someone I really care about, or sometimes it's a physical trigger, like pushing myself too far and ignoring my cues to stop.

    What happens is kinda like this: it feels like time slows down and im not really on this planet...i lose feeling in my legs and can't move anything. I'm aware of what's going on, but I can't respond to anyone. I'm not scared, so I don't think they're panic attacks. In fact, I feel very very peaceful, almost stoned. So I can't move, can't talk, can't respond, I just stare at a fixed object...but I'm totally chill with it.

    After a while the fog slowly clears and I become extremely emotional. Sometimes I become extremely emotional beforehand and have this impossible to ignore feeling of foreboding, like something's about to happen. I've been known to absently repeat "something's about to happen" over and over until I go into the episode. After the episode, I cry it out and then go into a really really deeeeeeeeeepppppp sleep. If I'm not around a bed, I'll just pass out wherever.

    And that's my episodes....thoughts?
     
  7. Mohawk1995

    Mohawk1995 Senior Member

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    Not really going beyond speculation to believe. The hard scientific we all are searching for is really never going to be fully enough to explain the intracacies of something like ME. Even when "it does" there are always new discoveries of things we thought did not exist. Case in point, the recent discovery of lymph vessels in the brain that completely makes the long standing "proven" blood-brain barrier obsolete and may have a massive impact on ME.

    The term psychosomatic is not mine. It simply means that our emotional (psychological) well being and are somatic (physical) well being are linked. Some have taken it much further than that and somehow blamed the patient for their lack of improvement. That is reprehensible and in the case of the NHS, CBT, "Just get moving and thinking better and this will all go away" school, they should be ashamed.

    I disagree with you that medical science has disproven the emotional-physical link that the term describes. In fact, much of medical research done in the real world (not in a vacuum) supports that emotional health and physical health are linked. You can disagree of course.

    My belief that the emotional well being and the physical well being of the patient are linked is vital to treating the patient who is rightfully struggling emotionally with a highly disabling ailment. Their motivation, support systems and thought process which are all highly influenced by their emotional health are all critical to any success I have as a Physical Therapist. Therapy is not practiced in a vacuum like much of the Random Controlled Trials are. It is messy business and requires a great deal of compassion for the patient while understanding the physiology and functional pathophysiology of what is creating the problems the patient is facing.

    Lastly, I will add that in the most basic form of physiology a thought itself is physiology (organic). Some researchers and many in medicine have decided to call the Somatic/Physical "organic" and the Emotional/Psychological "non-organic". The result of that is either washing their hands and walking away if the tests are negative or calling someone's real physiological issues conversion disorder, mallingering or drug seeking. In my experience the percentage of all patients who have any of these issues as the primary source is easily less than 5% and probably more like 1%.
     
  8. Mohawk1995

    Mohawk1995 Senior Member

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    You have put into words what our experience was with our son. We could actually tell he was heading for a crash by his mood and ability to respond to us. These were crashes without exertion mind you. It is actually why I spent so much time just replying on psychosomatic factors at play. To be clear, I am not saying your ME is psychosomatic! But from your testimonial and that of our son (and others I have read), there is a definite link between emotional status and physiological status. In fact it appears to go both ways. Something emotionally difficult setting off an episode or some physiological change creating an emotional episode. It is not that it is all in your head, but our emotions do influence us highly in my opinion.

    The "something is about to happen" sounds very similar to the Prodrome that Migraine sufferers sometimes get. In fact the whole episode sounds like migraine "behavior". We chased treating Migraines for 4 years prior to finding the true underlying issue was ME, so there are definitely some similarities. Your body expends a great deal of energy (that it does not really have to give) during the episode and so it shuts off literally it sounds like.

    Thank you for sharing and in my mind it all makes sense and was very close to our experience with our son.
     
  9. lgibson2017

    lgibson2017

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    I thought of them as pseudo-seizures, probably, especially since they often came from an emotional trigger. Really it's anything seriously stressing/jarring and my body just freaks out and shuts down. Very strange.

    However, if what your son is experiencing is the same as what I'm experiencing, I can tell you that it's not scary until afterwards lol. The actual experience is almost quite pleasant, as I said, i just feel stoned out of my mind almost.
     
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  10. Mohawk1995

    Mohawk1995 Senior Member

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    @lgibson2017 How true he can't remember much of what he has gone through. Maybe a blessing!
     
  11. valentinelynx

    valentinelynx Senior Member

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    Tucson
    Actually, to me (a physician, but not a neurologist) this sounds like something called a "simple partial seizure." It is not necessary to have loss of awareness to have this kind of seizure. And some of your experiences (time slowing down, changes in affect, automatic repetition of phrases) are pretty suggestive. I found a good description of this type of seizure on epilepsy.com. See below, particularly the kind called "sensory seizures" and "psychic seizures" (not that this latter is not at all a reference to so-called "psychogenic seizures."

    I think you might want to see a neurologist and get an EEG done, for a definitive diagnosis.

    What is a simple partial seizure?
    Simple partial seizures are usually divided into categories depending on the type of symptoms the person experiences:

    Motor seizures:
    • These cause a change in muscle activity. For example, a person may have abnormal movements such as jerking of a finger or stiffening of part of the body.
    • The movements may spread, either staying on one side of the body or extending to both sides. Other examples are weakness, which can even affect speech, and coordinated actions such as laughter or automatic hand movements.
    Sensory seizures:
    • These cause changes in any one of the senses.
    • People with sensory seizures may smell or taste things that aren't there; hear clicking, ringing, or a person's voice when there is no actual sound; or feel a sensation of "pins and needles" or numbness.
    • Seizures may even be painful for some patients. They may feel as if they are floating or spinning in space.
    • They may have visual hallucinations, seeing things that aren't there (a spot of light, a scene with people). They also may experience illusions—distortions of true sensations. For instance, they may believe that a parked car is moving farther away, or that a person's voice is muffled when it's actually clear.
    Autonomic seizures:
    • These cause changes in the part of the nervous system that automatically controls bodily functions.
    • These common seizures may include strange or unpleasant sensations in the stomach, chest, or head; changes in the heart rate or breathing; sweating; or goose bumps.
    Psychic seizures:
    • These seizures change how people think, feel, or experience things.
    • They may have problems with memory, garbled speech, an inability to find the right word, or trouble understanding spoken or written language.
    • They may suddenly feel emotions like fear, depression, or happiness with no outside reason.
    • Some may feel as though they are outside their body or may have feelings of déja vu ("I've been through this before") or jamais vu ("This is new to me"— even though the setting is really familiar).
    Who is at risk for simple partial seizures?
    Anybody can get them. They may be more likely in people who have had a head injury, brain infection, stroke, or brain tumor but most of the time the cause is unknown.

    What is it like to have a simple partial seizure?
    When people have simple partial seizures, they are fully awake, alert and able to interact throughout the seizure. Overall, these seizures are brief lasting less than 2 minutes

    Medical disorders such as, stomach disorders or a pinched nerve can cause some similar symptoms. Hallucinations can accompany psychiatric illness or the use of certain drugs. And some symptoms (such as déja vu) are experienced by almost everyone at some time. Whether the symptoms represent simple partial seizures depends on how often they occur and whether they are associated with other episodic changes or other seizure types.
     
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