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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Mon Aug 08, 2016 10:40 am 
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Drunk Dialed Ian MacKaye

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Rosie wrote:
LFL wrote:

I recently ordered exercise DVDs designed for senior citizens--maybe that could work for you?


That's a good idea, never thought of that. I'll look in to it.


I also ordered a low impact cardio DVD designed for plus sized people. Now to actually use it...


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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Mon Aug 08, 2016 10:48 am 
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Did you receive those yet? Which ones are they? I had a plus sized pilates that I thought was pretty good.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Mon Aug 08, 2016 12:50 pm 
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Drunk Dialed Ian MacKaye

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linanil wrote:
Did you receive those yet? Which ones are they? I had a plus sized pilates that I thought was pretty good.


I got them but I haven't tried or even watched them yet. They are these ones:

Absolute Beginners - Cardio & Strength Training Workout for Seniors

Shapely Girl: Let's Get Moving with Debra Mazda, Low-Impact Cardio

I also ordered a Biggest Loser one, but I'm scared that it might trigger me. I find it easiest to lose weight when I don't think of it as losing weight, but rather, as being healthful. But in case you are interested, it is this one:

The Biggest Loser: Power Walk

I was pleasantly surprised by how affordable these are. Before it got so hot I was walking, but August in Los Angeles is no time and place to exercise outdoors!


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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Mon Aug 08, 2016 1:41 pm 
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LFL wrote:
linanil wrote:
Did you receive those yet? Which ones are they? I had a plus sized pilates that I thought was pretty good.


I got them but I haven't tried or even watched them yet. They are these ones:

Absolute Beginners - Cardio & Strength Training Workout for Seniors

Shapely Girl: Let's Get Moving with Debra Mazda, Low-Impact Cardio

I also ordered a Biggest Loser one, but I'm scared that it might trigger me. I find it easiest to lose weight when I don't think of it as losing weight, but rather, as being healthful. But in case you are interested, it is this one:

The Biggest Loser: Power Walk

I was pleasantly surprised by how affordable these are. Before it got so hot I was walking, but August in Los Angeles is no time and place to exercise outdoors!


I know they are dated but Dancing with the Oldies is something that would be low impact as well.

I've been doing walking here in the mornings but beyond that, forget it. Too hot and too humid.

It isn't cardio but I've been incorporating these exercises lately.
http://roglawfitness.com/the-minimalist ... -mobility/

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Mon Aug 08, 2016 3:02 pm 
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Drunk Dialed Ian MacKaye

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Thanks! I appreciate the recommendations. Right now cardio is my main concern since I have hypertension and my cardiologist wants me to exercise my heart. But down the road I may check out other exercises too.


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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Aug 11, 2016 8:55 pm 
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I had a week of hellacious pain and then 6 days of relative peace that I was really happy about. Today has been crummy again. Really hoping I sleep well enough tonight to keep things at bay a bit tomorrow since I'll be at work alone. Meh.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Wed Aug 24, 2016 9:26 pm 
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Lots of problems with my legs/knees/ankles this week. Extra sucks since the only exercise I've been able to get lately has been walking and my legs keep nearly giving out when I try, or completely locking up with muscle cramps.

Basically this blows.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Aug 25, 2016 3:32 am 
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I'm sorry Moon, that sounds rough.


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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Aug 25, 2016 5:50 am 
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Drunk Dialed Ian MacKaye
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Apparently, I'm "healthy". My tests are all fine. The things I have "shouldn't" be causing problems. Both my doctors say I "should" be fine. My psych says I'm mentally fine too. So why do I feel so sick and painful all the time?!

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Tue Sep 13, 2016 9:26 pm 
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Even though I know suffer from costochondritis regularly, non-cardiac chest pain is never not scary. Especially when you're curled up on the floor of the board room in the dark hoping it will go away long enough to stand up.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Sep 15, 2016 3:20 am 
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Moon I hope the chest pain goes away! I've been having chest pain lately and it really is quite scary even when you know its not "serious"

Anyway I just need to rant I'm sorry. But I'm so fed up of how my "chronic pain" isn't just pain. Pain on its own I can deal with. Grit my teeth blah blah. But no, I have to feel constantly nauseous and (TMI warning) have awful bowel disturbances. I haven't been able to leave the house since Tuesday because I've been stuck going to the bathroom so much. How do you even deal with that? When you can't make commitments not because you're in pain (people are sympathetic to pain) but because you have to go to the bathroom too often (which is gross and funny).

It exacerbates my anxiety because I can't go anywhere where there isn't a bathroom, and being a bit of a germophobe I hate public bathrooms anyway, it stops me from exercising (why does exercise make you poop more!!) and there's nothing I can do about it. I can't take pills to stop me pooping because that makes my gastroparesis worse, and besides they don't help anything but temporary anyway.

And all my doc says is "well I can't see why you'd be having that problem". Like that helps? He doesn't even think it's "IBS" because none of the IBS treatments do anything. I keep a detailed food and symptoms diary, no correlation with my bad days.

I just want to feel healthy for once, or at least be able to leave the house without having to worry about my bathroom habits


And I'm so sorry for being gross

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Sep 15, 2016 4:55 am 
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Ugh, your doctor seems so unhelpful, Vixki. I'm so sorry he's not doing much for you. I take it he's already ruled out Crohn's disease? You can't go on forever like this, he should be referring you to a specialist.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Sep 15, 2016 5:46 am 
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Thanks Rosie. My doc IS the specialist and the second one ive seen. I had a colonoscopy which was all clear, I've had a CT scan and an inflammation scan which is all clear too. So no crohns. From the tests they've done, my body is completely healthy, apart from the gastroparesis (which apparently should stop me up, not make me go!) and endometriosis which wasn't much anyway and they got rid of it. It just irks me that he can say "well we don't know what's wrong with you" and leave it at that. Sure it's fine for him go home get paid get on with your life, but I'm the one who has no answers and not even any solution. I lost two kilos in the last day and a half and now I'm underweight again. I can't be underweight next time I go to an appointment else they'll accuse me of being anorexic (yeah they do that). I'm tired of having to fight so hard to be taken seriously. Surely just being unwell should be enough, but no it's like I'm presenting a court case or something and they're trying to prove im lying.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Sep 15, 2016 10:09 am 
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Yes, being unwell should be enough. And it's scary a specialist is not really able to help you, I thought maybe it was your GP the way you've been dismissed and just kind of left to it. It just seems like a never-ending cycle of crepe for you, I'm so sorry.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Sep 15, 2016 10:13 am 
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Thanks. I just seem to find the most unhelpful of specialists. I see a psychiatrist, who is nice but a bit odd, and he is probably the only helpful one out there (assures me that I'm not just making it all up). But he can't exactly do much. The last couple of days have been so miserable and looking back at my diary, it seems to happen every couple of months, my body just decides to mass evacuate.

And to top it all off my PS4 controller stopped bloody working.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Sep 15, 2016 11:07 am 
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Ever since it took me 4 hrs to get home before Labor Day, my back has been bad, plus I stressed it moving things around at work. It's been progressively worse each day and today I can hardly walk.

It hasn't been too bad in the last year since I don't do nearly as much walking and standing so now my pain tolerance is probably lower too.

Also, my chair at work is broken/completely crappy.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Sep 15, 2016 7:21 pm 
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Drunk Dialed Ian MacKaye

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Vixki, have you had an endoscopy? I had similar digestive symptoms and in my case it turned out to have been an H. Pylori infection which was spotted (along with signs of gastritis) in an endoscopy. I was immediately treated with a ten day course of two kinds of antibiotics as well as 30 days of a powerful antacids (H. Pylori being the only bacteria that thrives in acid). A good thing since H. Pylori can cause stomach cancer if left untreated. I'm doing much better now.

Incidentally, while I was waiting for a diagnosis, I mentioned my symptoms to my dietitian and she told me that anxiety can be a big factor in bowel symptoms as well. This is not at all the same thing as making it up. It's a very real effect that powerful emotions can have on the body.


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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Fri Sep 16, 2016 1:33 am 
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Drunk Dialed Ian MacKaye
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I've not had an endoscopy no, I'll have to see what my doctor says if I ever get to see him again...

I'm aware that anxiety can cause problems and if it is all anxiety I'm willing to accept that. However I have had years of therapy in my teens for "anxiety" which did nothing for my stomach, and my psychiatrist tells me he doesn't think it's anxiety related so I'm not sure.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Fri Sep 16, 2016 2:22 am 
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Drunk Dialed Ian MacKaye

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vixki wrote:
I've not had an endoscopy no, I'll have to see what my doctor says if I ever get to see him again...

I'm aware that anxiety can cause problems and if it is all anxiety I'm willing to accept that. However I have had years of therapy in my teens for "anxiety" which did nothing for my stomach, and my psychiatrist tells me he doesn't think it's anxiety related so I'm not sure.


Yeah, that makes sense. I've never heard of anxiety causing gastroparesis so it does sound unlikely that it's the sole cause.

I would definitely look into getting an endoscopy, especially if you get abdominal symptoms of any kind, even intermittently. There's also an H. Pylori breath test, though I never had that done. The endoscopy might reveal something else, though, so it's worth it to have it done. I'm kind of annoyed with your doctor for not suggesting that you get it done when you had your colonoscopy, since it involves the same preparation process. I had both done on the same day and got it all over with at once.

H Pylori may not be the cause of your symptoms (it could also be something we haven't thought of) but it's a good idea to check for it since it can cause ulcers and stomach cancer in some people.

Can you change doctors or does the healthcare system you use not allow that? Here in the US it all depends on what one's health insurance covers.


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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Fri Sep 16, 2016 5:03 am 
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Thanks. My doc only once suggested an endoscopy and that was the "worst case scenario" so he could botox my stomach or something if the gastroparesis got worse. It was never mentioned with the colonoscopy which I think was just to rule out crohns/colitis.

I can technically ask "for a second opinion" but I have to go to my GP and request a new referral, and since I already have a specialist ill be way way down on the priority list. I already waited a year to see this one so I dread to think how long a non priority referral will take. This guy is better than the last guy who did not believe in my nausea at all, this one immediately ordered the scan for gastroparesis.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Fri Sep 16, 2016 9:28 pm 
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Drunk Dialed Ian MacKaye

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vixki wrote:
Thanks. My doc only once suggested an endoscopy and that was the "worst case scenario" so he could botox my stomach or something if the gastroparesis got worse. It was never mentioned with the colonoscopy which I think was just to rule out crohns/colitis.

I can technically ask "for a second opinion" but I have to go to my GP and request a new referral, and since I already have a specialist ill be way way down on the priority list. I already waited a year to see this one so I dread to think how long a non priority referral will take. This guy is better than the last guy who did not believe in my nausea at all, this one immediately ordered the scan for gastroparesis.


That is really too bad. I am very fortunate to have insurance that allows me to choose my doctors from among a network of doctors that work with that health insurance company. They have complained to me that the insurer doesn't compensate them well, and I sometimes worry they'll decide to withdraw from that network, but at least for the moment, I'm happy with most of my specialists as well as my primary care doctor. We pay way too much for healthcare (In the thousands of dollars every year), so it doesn't come free. But I wish everyone had the same access to providers they are satisfied with.


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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Sep 22, 2016 1:02 pm 
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My medication is still mostly working really well. Which is great.

Except that when I have breakthrough pain, I'm completely blindsided by it. It's been cold here the past day or two (California cold ya'll, which is otherwise totally amazing) and light cold breezes on my face are like OH HI IM YOUR FACE IM A PIECE OF PAPER BEING TORN APART.

I've had to double dose frequently over the past week (my neurologist ok'd this a while back) and I'm getting through it and probably soon it'll be back to fine again but right now it's hard. My kid tickles my face and I'm grimacing; it's hot and I turn my fan on in my bedroom and every time I move in my sleep such that the air touches my face, I wake up; some dude at the farmer's market is playing a steel drum and every note has me crumpling in pain; I go out in the sun, so happy to get some daylight, and am instantly struck down. It forking sucks.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Mon Oct 03, 2016 10:20 pm 
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There was a problem with my rheumatologist appointment, I showed up on the wrong day (pretty sure my gp's receptionist told me the wrong day, whatever) and it got pushed out for another couple of weeks. Ok, fine. Kind of sucks as I could barely stand that day and it would have been a good day for her to see how I'm feeling but there you go. With how I've been, chances are the next appointment I'll be about the same.

My feet are getting so sore, though - this is a totally new thing for me. My feet are going super flat and are just getting worse and worse. Also my stomach has been weird, I haven't had stomach problems like this since I ate dairy. I think I might have ulcers? Would be a first but it seems to fit all the symptoms.

I don't know if I should be trying to see my GP sooner than the rheumatologist though, my increase of joint issues, foot problems and stomach problems could all my symptoms of a totally other condition that a sufferer pointed me in the direction of. They had been misdiagnosed as having fibro and then got this other, rarer but easier to confirm, diagnosis.

And then part of me thinks I'm just this super hypochondriac and it's just my fibro and these totally unrelated things. My steady downwards progression over the last 10 months should be taken seriously, right?

Anyway, my stomach hurts, my muscles hurt, my joints hurt, my bones hurt, I'm exhausted, and my bowels are reacting strangely. I need one part of me to work properly.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Sun Oct 09, 2016 12:16 am 
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"My steady downwards progression over the last 10 months should be taken seriously, right?"

Yes.


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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Sun Oct 09, 2016 11:03 am 
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I'm sorry you aren't being taken seriously, Moon. It's not right.

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