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Did anyone symptoms start with muscle tensing in the limbs at rest?

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33 year old male. 12 years of poor sleep, have sleep apnea, but even after getting CPAP and very low AHI (under 2), still sleep very poorly.

About 4 weeks ago, my forearm muscle on my right side started tensing at rest. It's non-stop, everyday since it started. It's also progressed to both my arms now. I've had it for several months in my calves too but I thought it was restless legs. However, when asking a RLS forum, no one described it as actual muscles tensing up. It also didn't happen all day like mine. The muscle will slowly ever so surely contract, and after about a minute it's contracted a lot and then I have to focus on it to get it to relax. Immediately once again it starts tensing. It's not all my limbs simultaneously, but it does switch between one or multiple.

At this point all blood tests have not revealed anything. Waiting for the results of an MRI and EEG. Barely sleep because the muscle tensing makes it very difficult. At this point I'm extremely worried about something like PD or ALS, but after years of suffering, and now this, I just want something concrete. Did anyone else symptoms start as muscle tensing in the limb and sleep disturbance?

Edited by sventory

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Sventory,

Is your MRI of your spine or just your brain? It might be an issue with your spine. It couldn’t hurt to make an appointment with an Orthopedic spine specialist to be on the safe side. Parkinson’s normally presents on one side of the body before it progresses to the other. I was diagnosed a little over 4 years ago with symptoms dating back approximately 6+ years. My symptoms are still on one side only. I do not have the muscle tension/cramping that you are describing.  It could also be some form of dystonia. Give the doctors a chance to figure out what is wrong before you start self diagnosing yourself. You’ll worry yourself sick and that won’t be helpful to your state of mind.

Dave

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Daven, Well I got a brain, my doctor also ordered a lumbar, but the insurance denied it... I see, thank you. It did start on one arm, and progressed to both, but over the course of a week. That's the thing I hate about reading explanations for things. They say "muscle stiffness or rigidity", okay well when I don't focus on relaxing, it is rigid, and when I get up in the morning man the arms are stiff as hell. So is that how it starts? Can't really find out without asking people affected themselves. so what was it like? Did you just wake up one day, and you were stiff and it never went away, but it doesn't feel like active flexing? I'm just sitting here reading, oh bad posture? Me, sleep disturbance? Got that even before the tensing. Stiffness and rigidity? yes that too.

 

My life has been pretty terrible the past month, my already poor sleep is even worse now, the sleep is so little and fragmented I don't even know if I am sleeping. I am sure I am because I'm not hallucinating or anything..so I am just trying to find something and make sure the doctors are diligent. It took doctors WAY too long (6 years) to properly diagnose me with sleep apnea, when it finally did, I was relieved, but I still didn't get better, now this. It seems I'm just in a slow downward spiral. So I always try to advocate for myself foremost, but you are right, you can read A LOT of scary stuff online.

zerohours, the sleep predated the muscle tension by many many years, like 10.

 

Edited by sventory

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Sventory,

My rigidity crept up on me over several years.  I really wasn't aware of it, just kept getting up earlier and earlier to get ready for work. My first real symptom was when my wife noticed that i didn't swing my right arm when I walk. We thought it was funny at the time and became a running joke for several years.  I thought all my symptoms were just a part of ageing. If not for my wife researching Parkinson's for her mother, I'd probably be pretty miserable right now.

Dave

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That's how it was for me though too. Maybe not over several years, but at least 1. At first I thought "oh im just stress and tensed I need to relax". My shoulders would be bunched up or something. I also realize my arms may have bothered me earlier, just not enough to notice what was going on. I would often cross my legs while trying to sleep, or place my arm between my legs, because contact and a position that has some tension built in seemed to make me less uncomfortable, which is still true even now. Except now it seems it's gotten extreme enough that I see exactly what is going on and can't control or ignore it. Do your muscles ache after a while? Do they ever "untense"? Also with mine, it only occurs at rest, if I start moving the limbs, it seems to go away or be lessened so much I don't notice it except a little in my right calf still a bit stiff always.

Edited by sventory

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It was not my first symptom but I had problems with one leg always being tense.  It made sleep difficult and sitting down to watch a movie almost impossible it was so irritating.  If I thought about it I could make it relax but the very second I stopped trying to relax it the tension would return.  It was not the same as my rigidity, it was a whole separate issue.  Thankfully I haven't had to deal with it since starting levadopa.

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Wow peace, that is exactly like what I am experiencing. What other symptoms did you have previous to that? And what is rigidity then? It sounded like rigidity was just inability to relax a tensed muscle.

Edited by sventory

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My presenting symptom was toe curling (dystonia).  Rigidity is a stiffness or tightness (without feeling like the muscle is contracted or tense) of muscles that can cause a lack of full range of motion.  Rigidity makes me feel like I need to stretch.  

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Okay thanks for the explanation. Jeez I'd rather have that now, I can deal with that as opposed to exhausting of the constant tension untensing. My doctor has now proscribed .5mg artane 2x daily while waiting for test results. Tried it one day so far and it didn't seem to help.

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4 hours ago, sventory said:

Daven, Well I got a brain, my doctor also ordered a lumbar, but the insurance denied it... I see, thank you. It did start on one arm, and progressed to both, but over the course of a week. That's the thing I hate about reading explanations for things. They say "muscle stiffness or rigidity", okay well when I don't focus on relaxing, it is rigid, and when I get up in the morning man the arms are stiff as hell. So is that how it starts? Can't really find out without asking people affected themselves. so what was it like? Did you just wake up one day, and you were stiff and it never went away, but it doesn't feel like active flexing? I'm just sitting here reading, oh bad posture? Me, sleep disturbance? Got that even before the tensing. Stiffness and rigidity? yes that too.

 

My life has been pretty terrible the past month, my already poor sleep is even worse now, the sleep is so little and fragmented I don't even know if I am sleeping. I am sure I am because I'm not hallucinating or anything..so I am just trying to find something and make sure the doctors are diligent. It took doctors WAY too long (6 years) to properly diagnose me with sleep apnea, when it finally did, I was relieved, but I still didn't get better, now this. It seems I'm just in a slow downward spiral. So I always try to advocate for myself foremost, but you are right, you can read A LOT of scary stuff online.

zerohours, the sleep predated the muscle tension by many many years, like 10.

 

I see.  I’m 33 as well.  I had nothing preceding my current symptoms.  I had anxiety and depression I overcame.  But nothing since 2014 on that front.  I have no dx.  And my neuro said he doesn’t suspect PD while my PCP said I could be at the beginning, middle, or end of something—which is so vague as to be meaningless.  My sleep is like, I go to bed at 1:30, get up between 5-6; go back to bed until 8-9 am.  Maybe a nap at some point during the day.  I never feel tired.  Or like I can go into shutdown mode.  Very uncomfortable.  

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Sounds nice to me, I spend hours in bed awake with no sleep. I may sleep 2-3 hours a night in fragments. So are you not yet diagnosed with PD? You just have insomnia? No other symptoms?

Edited by sventory

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53 minutes ago, sventory said:

Sounds nice to me, I spend hours in bed awake with no sleep. I may sleep 2-3 hours a night in fragments. So are you not yet diagnosed with PD? You just have insomnia? No other symptoms?

I have other symptoms: GI issues; tightness in hands; twitching; walking issues; pains in toes and fingers and wrists; easy cramping; and some shakiness; as well as burning pains —which I take gabapentin for.  

My sleep has improved a bit.  I also used to be up until 6am every morning.  I also have violent full body jerks before sleeping; and have lost that power-down mechanism.  And I sometimes can’t complete yawns.  Very bizarre.

Edited by zerohours000

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Man sound really rough. Gabapentin gave me jerks when trying to sleep. Are or were you on any other meds? Lots of that stuff is crazy and all over the place but reminded me of withdrawing from benzos

 

EDIT: Just saw your other post. You are on a ton of meds, and I saw you are titrating down on some like mirtaz, honestly I'd be more akin to think that is the issue. Mirtaz is horrible to come off, read posts at patient.info about it. Any AD/anti anxiety has withdrawal effects. 

I'm actually praying against all hope my muscle tensing is a result of mirtaz actually also. I was on very low dose 3.75mg, not even every day, but for over 3 years. And I also have taken melatonin everyday for 10 years straight, and before, way too much. Now through my own research, it seems mirtaz stmiulates dopamine production in certain parts of the brain, and melatonin as part of the natural cycle, suppresses dopamine production. And 3MG is way too high, which I was taking every night. Since I've stopped taking mirtaz, and cut down to .25mg of melatonin, or some nights none, I think, maybe its just a bad effect. Taking both these for so long may have significantly reduced the amount of dopamine I naturally produce, both by stimulating its production and then removing that stimulate, and by supression because of too much melatonin. It's just a theory though because there's no research on that stuff. Only pieces to draw a hypothesis.

I'm trying to get by on no-meds except ibuprofen and hope the symptoms fade. I did go through the same thing with benzos because my stupid doc refused to believe I had sleep apnea and its all in my head, so I took benzos for 9 months, then they stopped working, so I stopped taking it, I had tons of the effects you had. Timbling in limbs, jerking everytime I try to fall asleep that would wake me back up, rashes, sore joints. It sucked but went away in a few weeks mostly except the crushing insomnia. In fact, that's when I started taking mirtaz, to help me sleep coming off benzos. There's honestly so much bad with pills that affect neurotransmitters, tons of people have weird reactions and should not be taken lightly.

Edited by sventory

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3 hours ago, sventory said:

Man sound really rough. Gabapentin gave me jerks when trying to sleep. Are or were you on any other meds? Lots of that stuff is crazy and all over the place but reminded me of withdrawing from benzos

 

EDIT: Just saw your other post. You are on a ton of meds, and I saw you are titrating down on some like mirtaz, honestly I'd be more akin to think that is the issue. Mirtaz is horrible to come off, read posts at patient.info about it. Any AD/anti anxiety has withdrawal effects. 

I'm actually praying against all hope my muscle tensing is a result of mirtaz actually also. I was on very low dose 3.75mg, not even every day, but for over 3 years. And I also have taken melatonin everyday for 10 years straight, and before, way too much. Now through my own research, it seems mirtaz stmiulates dopamine production in certain parts of the brain, and melatonin as part of the natural cycle, suppresses dopamine production. And 3MG is way too high, which I was taking every night. Since I've stopped taking mirtaz, and cut down to .25mg of melatonin, or some nights none, I think, maybe its just a bad effect. Taking both these for so long may have significantly reduced the amount of dopamine I naturally produce, both by stimulating its production and then removing that stimulate, and by supression because of too much melatonin. It's just a theory though because there's no research on that stuff. Only pieces to draw a hypothesis.

I'm trying to get by on no-meds except ibuprofen and hope the symptoms fade. I did go through the same thing with benzos because my stupid doc refused to believe I had sleep apnea and its all in my head, so I took benzos for 9 months, then they stopped working, so I stopped taking it, I had tons of the effects you had. Timbling in limbs, jerking everytime I try to fall asleep that would wake me back up, rashes, sore joints. It sucked but went away in a few weeks mostly except the crushing insomnia. In fact, that's when I started taking mirtaz, to help me sleep coming off benzos. There's honestly so much bad with pills that affect neurotransmitters, tons of people have weird reactions and should not be taken lightly.

Im also on Celexa.  I was on a SSRI for 8 years until 2014; then off until two months ago when my mood became way worse.  I was on benzos from 2006-2014 as well.  I was briefly on benzos for like 3 months this year and just quit because I’d rather not get back on them.  

I’ve never heard of that long a latency period causing issues (almost 4 years) but I also don’t know what else it could be either.  My doctors don’t seem to think it’s PD.  But then again, I’m not sure 5 months worth of symptoms is much to go on.  I’m going to try and get in contact with a movement specialist soon.  

Zer0

Edited by zerohours000

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Sventory,

Do you still swing your arms when you walk? How’s your sense of smell? 

I’ve read, don’t remember where, that long term use of melatonin can have the opposite effect on sleeping. I take 6mg of melatonin plus 100mg of trazadone on the weekends. To much trazadone and melatonin leave me hung over and fatigued the next day. I do take 50mg of trazadone on work nights. Many years ago my pain management doctor gave me some great advice about waking up in the night - accept that it happens and don’t stress over it. I find it easier to fall back asleep when I follow that simple rule. My MDS wants me to take the melatonin and full trazadone dose every night because I sleep walk and he is concerned that I will injure myself. It’s hard to work when you’re hung over every day.

Dave

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Daven, I swing my arms and can still smell things. Though not great, but I think it's because of the CPAP leaving me a little stuffy every morning.

That's a buttload of melatonin, way more than needed. Dopamine and Melatonin are opposites in your sleep-wake cycle. Your dopamine production usually peaks in the morning and is the smallest at night, and visa versa with melatonin. I'm not expert but here's part of an explanation:

https://www.ncbi.nlm.nih.gov/pubmed/12043836

You may be suppressing your dopamine production by overloading yourself with Melatonin. Of course as the article mentions, it may be helpful in those with PD still regardless.

 

Zerohours, I'm not saying you are getting benzo withdrawal, I'm saying your current meds might be causing it, especially mirtaz. Any type of neuroleptic can cause weird withdrawals. You were recently reducing dosages right? Or it could even be tolerance withdrawal, where the current amount you are taking is not enough to maintain the previous effects. And you are taking multiple. 

Mirtazipine also stimulates dopamine production: https://www.ncbi.nlm.nih.gov/pubmed/15145142

What happens when you go through withdrawal, is the brain becomes accustomed to the drug blocking, replacing, or enhancing, the effects of neurotransmitter(s), and when you discontinue or decrease use, you will then not be having enough of that neurotransmitter, leading to all sorts of bad stuff.

 

The artane seems to be helping my muscle tensing now. Whatever my condition it seems to respond well to dopaminergic drugs. I have appointment with my neuro today for EEG and MRI tests. I guess it's going to be "everything looks normal, we can only treat symptoms". BS I've seen too many times before.

 

Edited by sventory

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59 minutes ago, sventory said:

Daven, I swing my arms and can still smell things. Though not great, but I think it's because of the CPAP leaving me a little stuffy every morning.

That's a buttload of melatonin, way more than needed. Dopamine and Melatonin are opposites in your sleep-wake cycle. Your dopamine production usually peaks in the morning and is the smallest at night, and visa versa with melatonin. I'm not expert but here's part of an explanation:

https://www.ncbi.nlm.nih.gov/pubmed/12043836

You may be suppressing your dopamine production by overloading yourself with Melatonin. Of course as the article mentions, it may be helpful in those with PD still regardless.

 

Zerohours, I'm not saying you are getting benzo withdrawal, I'm saying your current meds might be causing it, especially mirtaz. Any type of neuroleptic can cause weird withdrawals. You were recently reducing dosages right? Or it could even be tolerance withdrawal, where the current amount you are taking is not enough to maintain the previous effects. And you are taking multiple. 

Mirtazipine also stimulates dopamine production: https://www.ncbi.nlm.nih.gov/pubmed/15145142

What happens when you go through withdrawal, is the brain becomes accustomed to the drug blocking, replacing, or enhancing, the effects of neurotransmitter(s), and when you discontinue or decrease use, you will then not be having enough of that neurotransmitter, leading to all sorts of bad stuff.

 

The artane seems to be helping my muscle tensing now. Whatever my condition it seems to respond well to dopaminergic drugs. I have appointment with my neuro today for EEG and MRI tests. I guess it's going to be "everything looks normal, we can only treat symptoms". BS I've seen too many times before.

 

I’m worried the Mirtazipine was actually masking PD symptoms.  When I first took it, the issues with my left hand actually went away.  It never helped me get to sleep though.  It made me tired the very first day I took it but nothing afterwards.  🤷‍♀️ 

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Hmm interesting. It helps me sleep as long as I don't take it everyday and take half 7.5mg or smaller amount. When my tensing first started I thought it as because of tolerance withdrawal so started taking it everyday, and then it no longer made me sleepy. And it didn't seem to help with the muscle tensing at all.

 

MRI and EEG come back normal. So I guess I'm stuck, maybe dystonia, maybe start of something worse but too early to tell. Artane definitely helps my muscle tensing, but not my sleep. I doubt my body can heal if I can't sleep.

 

DaveN, it's very hard to sleep with your muscles constantly tensing. I don't really "wake up" just don't sleep, except like 1-2 hours a night where I actually sleep. I don't get stressed about it just sit there and try to relax, but still doesn't help me fall asleep =(

Edited by sventory

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Sventory,

I have Parkinson's, so my dopamine production is already compromised. I take Rytary every 4 1/2 hours to supplement my lack of dopamine. My doctor is more concerned about me injuring myself while sleeping. I'm not sure how you know I'm taking too much Melatonin.   My doctor has recommended that I can go up to 10mg.  I'm pretty sure that my doctor knows more about me than you and I will continue to listen to his advice. I'm not offended but will give a small bit of advice. Most MDS doctors work with their patients to devise a plan to provide the best care possible. Suggesting that you may know better may not always be taken well.

Melatonin Dosing Recommendations:

     https://www.verywellhealth.com/how-to-take-melatonin-3015192

     https://www.sleepassociation.org/sleep-treatments/melatonin/

     https://www.healthline.com/health/melatonin-overdose#recommended-doses

Higher doses are recommended for those with REM Behavior Disorder as noted in:

     https://www.verywellhealth.com/melatonin-can-treat-rem-behavior-disorder-3015212

Dave

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Yes I'm sorry if I came across as dxing you or something. I meant by the last sentence about melatonin that this doesn't apply to PD as the article stated. I should have clarified the former statments were for people with no other issues. As you yourself said it can have negative effects long term/too much (and some research has shown). It really seems to be a weird double edged sword. Sorry again.

Edited by sventory

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On 8/30/2018 at 9:55 AM, zerohours000 said:

I’m worried the Mirtazipine was actually masking PD symptoms.  When I first took it, the issues with my left hand actually went away.  It never helped me get to sleep though.  It made me tired the very first day I took it but nothing afterwards.  🤷‍♀️ 

@zerohours000 That's an odd thing to be worried about, given current PD drugs can't do much more than mask symptoms. In other words, the very thing that worries you is the same thing those of us with PD call 'best available treatment.'

If mirtazapine was capable of masking PD motor symptoms, it might be a pretty effective PD drug (by today's definition). However, looking at the Wikipedia entry for mirtazapine, I see no indication it works that way. Of course, I'm not a pharmacist or pharmacologist, so I might be missing something.

Quote

Unlike many other antidepressants, it does not inhibit the reuptake of serotoninnorepinephrine, or dopamine,[7][67] nor does it inhibit monoamine oxidase.[68] Similarly, mirtazapine has weak or no activity as an anticholinergic or blocker of sodium or calcium channels...

I take this to mean mirtazapine has no real effect on dopamine one way or the other--it doesn't supply dopamine (like levodopa), or replace dopamine (like the agonists), or prevent breakdown of existing dopamine (like the monoamine oxidase inhibitors Azilect and selegiline). Mirtazapine is not an anticholinergic (like some PD drugs, including Artane), nor is it a calcium channel blocker (like isradipine, a blood pressure med that's being studied as a PD progression-slowing treatment).

As discussed on other threads, it seems quite unlikely you have PD. That's been a consistent response, from the neurologists you've seen, to those of us who are personally familiar with PD tremors and have watched your videos, to Dr. Okun, who is a Movement Disorder Specialist and has seen thousands and thousands of patients.

I don't doubt that your anxiety and suffering are real, whatever the cause, but what leads you to believe mirtazapine could mask PD motor symptoms?

Edited by ShopGuy
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23 hours ago, ShopGuy said:

@zerohours000 That's an odd thing to be worried about, given current PD drugs can't do much more than mask symptoms. In other words, the very thing that worries you is the same thing those of us with PD call 'best available treatment.'

If mirtazapine was capable of masking PD motor symptoms, it might be a pretty effective PD drug (by today's definition). However, looking at the Wikipedia entry for mirtazapine, I see no indication it works that way. Of course, I'm not a pharmacist or pharmacologist, so I might be missing something.

I take this to mean mirtazapine has no real effect on dopamine one way or the other--it doesn't supply dopamine (like levodopa), or replace dopamine (like the agonists), or prevent breakdown of existing dopamine (like the monoamine oxidase inhibitors Azilect and selegiline). Mirtazapine is not an anticholinergic (like some PD drugs, including Artane), nor is it a calcium channel blocker (like isradipine, a blood pressure med that's being studied as a PD progression-slowing treatment).

As discussed on other threads, it seems quite unlikely you have PD. That's been a consistent response, from the neurologists you've seen, to those of us who are personally familiar with PD tremors and have watched your videos, to Dr. Okun, who is a Movement Disorder Specialist and has seen thousands and thousands of patients.

I don't doubt that your anxiety and suffering are real, whatever the cause, but what leads you to believe mirtazapine could mask PD motor symptoms?

I see.  I think I had read it somewhere on another forum.  

I agree, that it’s been said a few times it doesn’t look like PD.  My problem is I can’t seem to get an answer as to what it *could* be.  

I had another neuro say it wasn’t ALS; had a doctor do an EMG two months ago and my twitches and EMG were “normal” with no neuropathy/denervation,

Had an MRI in maybe April/May and no lesions; ER doctor said MS unlikely; scan was unremarkable.

Had biopsy on skin for small fiber neuropathy—nada.

Bloodwork: low d3; positive ANA (which is like for autoimmune type stuff but rheumatologist said no)

So I’m kind of stuck.  And I’m not sure what I can do right now.  

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My problem is I can’t seem to get an answer as to what it *could* be. 

Quote

So I’m kind of stuck.  And I’m not sure what I can do right now.

@zerohours000

As you may have noticed from my signature, my father also had PD. He was a very private man, but in one of the few conversations we had about the condition we shared, he said, 'Be careful. It's easy to wind up in dark place with this.'

Shortly after my dx, I realized a few things that have been important for me:

  • In spite of publicly playing the cynic, I'm actually an optimist. Talking with a therapist from time to time helps keep the optimist tendency on top, and avoid the 'dark place.'
  • 'It is what it is' isn't an empty phrase. Acceptance isn't at all the same thing as giving up.
  • Telling myself others have it worse (or better) doesn't change my own situation. At best, I wind up basing my happiness on the misery of others. At worst, I wind up envying someone else's good health.

Here's the thing: being diagnosed with PD doesn't answer much. You still don't know how fast progression will be, when this or that treatment will be needed, or which combination of a whole laundry list of symptoms you'll eventually develop (including dementia). You don't know if the next ten years will produce improved treatments, or if the options available now are basically as good as it's going to get. Etc., etc., etc.

None of this is something any of us can do anything about. It is what it is. You come to accept the uncertainty, or find the dark place. (Likely a bit of both.)

There's some folks with PD who've been very articulate about all this—Michael J. Fox and Michael Kinsley come to mind, but there are many others. Although it's likely you don't have PD, you might find some of what they've written useful. A Google search should turn up plenty.

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6 hours ago, ShopGuy said:
  • In spite of publicly playing the cynic, I'm actually an optimist. Talking with a therapist from time to time helps keep the optimist tendency on top, and avoid the 'dark place.'
  • 'It is what it is' isn't an empty phrase. Acceptance isn't at all the same thing as giving up.
  • Telling myself others have it worse (or better) doesn't change my own situation. At best, I wind up basing my happiness on the misery of others. At worst, I wind up envying someone else's good health.

I agree with all of this.  A few months ago, just after this began, I was in a much worse place mentally.  But I’ve been telling myself “it is what it is” and nothing can change what it is, right now.  My biggest bugaboo, currently, is I’ve no idea what “it” is, regardless of the accuracy of the idiom.  I’m not sure why I came back to thinking PD.  When it was just the twitching I was worried it was ALS.  Now I’m still kind of worried it’s ALS.  Though, a lot of my twitching has subsided.  It was awful a few months ago:

This ^ was in like May.  And lasted until the end of June.  It went away in my arms but I still get this in my quads (front and back), calves, lips, and chin.  

This was deemed benign fasciculation syndrome.  Someone did say BFS can cause a variety of symptoms.  I’m not sure if sleep disorders or GI issues were among them.

As always, thanks for replying.  And thanks for the advice.  

Best,

Zer0 

 

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