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 Post subject: bisque and moan about chronic pain
PostPosted: Wed Jul 27, 2016 7:47 pm 
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Sick of Cupcakes
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Sick of tying up the "worst things" thread, and the "how is your body betraying you" thread with your annoying everyday pain shiitake? Me too.

How you doing? Finding any coping mechanisms? Changing meds? Doctor being a dick or helpful for once?

Share and bisque and moan and commiserate. Ask for advice or just vent.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Jul 28, 2016 4:11 am 
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Drunk Dialed Ian MacKaye
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My psych wants to discharge me because he thinks my mental health problems are caused by my pain. Yes I bloody know that! But the pain isn't going to go away, can't I get some help to deal mentally with that? Apparently not, the not a psychs job. Or anyone's job, it seems.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Jul 28, 2016 4:29 am 
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I'm pretty fed up of not being able to walk or stand for more than a few minutes without crying in pain. I really miss going for walks, I like being out in nature. Whenever I mention it to my Doc, I get the 'It's because you're fat' thing. Yes, and you're an unhelpful dick.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Jul 28, 2016 4:52 am 
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Drunk Dialed Ian MacKaye
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Rosie wrote:
I'm pretty fed up of not being able to walk or stand for more than a few minutes without crying in pain. I really miss going for walks, I like being out in nature. Whenever I mention it to my Doc, I get the 'It's because you're fat' thing. Yes, and you're an unhelpful dick.


They come up with any random excuse, don't they? I have trouble exercising, and my doctor's answer is "It's because you're unfit". Like...no shiitake I'm unfit, I can't exercise!

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Jul 28, 2016 5:26 am 
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I find, for the fibro, taking 500mg magnesium a day and making sure my vit D is topped up, helps a lot. I'm at the end of two weeks of daily migraines and that shiitake can bugger right off.


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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Jul 28, 2016 7:06 am 
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It has been a few years since I've been to my rheumatologist so I needed a re-referral and I'm booked for the end of September. Better than my original 4 month wait! So not really a complaint, would like it to be sooner but I will manage.

I'm doing so much worse than I ever have, and am having a lot of joint pain which makes me concerned that it could be more than the fibro. With family history of lupus and ALS and such I need to stay on top of things. Doing a very rare thing and staying home from work due to pain today - I was up all night and work won't be busy today so I won't be sorely missed. But I still hate to do it.

Very fortunate that my work is being supportive and letting me reduce my hours to try and manage. Not sure if it is enough of a change at this point but giving it some time.

Fezza, thank you for the reminder about the magnesium. I really need to remember to pick some up when I go shopping.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Jul 28, 2016 7:44 am 
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Semen Strong
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I am so sorry Vixki and all those suffering! My BIL has chronic pain that stopped him being able to work and uniformly MDs have been so unhelpful and dismissive whenever they're confronted with something they don't understand right away. You know how on Grey's Anatomy the MDs do research to find out what is going on? That's the most fiction on that show! I would love an MD who says "Hey, let's figure out how to help you" As opposed to each specialist blaming it on another (neuro says it's all in your mind, the psych says it's all in your body), and dismissing you with a collective shrug of indifference and some gaslighting.

And OMG the whole you're "fat" (meaning unfit - in quotes because plenty of overweight people are very fit!) because you don't exercise when you can't exercise because of a health problem is so frustrating. I was always so fit and spent hours in the gym until my knee injury, and then everything I do seems to aggravate it or reinjure it. And the PT people look at me with disdain, for being fat, so that's superhelpful.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Jul 28, 2016 8:02 am 
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Drunk Dialed Ian MacKaye
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Tofulish wrote:
I am so sorry Vixki and all those suffering! My BIL has chronic pain that stopped him being able to work and uniformly MDs have been so unhelpful and dismissive whenever they're confronted with something they don't understand right away. You know how on Grey's Anatomy the MDs do research to find out what is going on? That's the most fiction on that show! I would love an MD who says "Hey, let's figure out how to help you" As opposed to each specialist blaming it on another (neuro says it's all in your mind, the psych says it's all in your body), and dismissing you with a collective shrug of indifference and some gaslighting.

And OMG the whole you're "fat" (meaning unfit - in quotes because plenty of overweight people are very fit!) because you don't exercise when you can't exercise because of a health problem is so frustrating. I was always so fit and spent hours in the gym until my knee injury, and then everything I do seems to aggravate it or reinjure it. And the PT people look at me with disdain, for being fat, so that's superhelpful.


I wish I had a doctor who was super interested in figuring out how to fix me. That'd be so cool!

I think there is a lot of weight related stigma in the medical world. I'm not fat, infact I'm a few pounds underweight, and I have had many doctors go "well you look healthy". I've been refused tests because I'm not overweight, or underweight enough - and yet I know if I was overweight it'd all be blamed on that, and having been very underweight before, at that point they decided it must be an eating disorder? I'm not sure why they are so obsessed with weight, but it seems a huge stumbling point. You're underweight? Must be anorexic. You're a "normal" weight? Must be healthy then. You're overweight? That's why you're sick. What do they want?

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Jul 28, 2016 8:25 am 
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Semen Strong
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I think there is just so much pressure to "figure it out" and move on. So they grab the fastest diagnosis, even if it's wrong, shoo you out the door, and get the next person in.

My dentist was telling me that decades ago, they hadn't figured out that grinding your teeth caused migraine headaches and terrible jaw pain. So people would go to the MD and report being in pain, the MDs could find no cause for this debilitating pain, so the MDs decided they were crazy and committed them to insane asylums. Because that was easier than actually trying to figure it out.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Jul 28, 2016 9:22 am 
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Drunk Dialed Ian MacKaye
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Oh yeah, if you look into medical history it's amazing how many things were just "assumed". Did you know that animal manure used to be touted as a cure for period pains and infertility? Because, obviously, it's a fertiliser, and you want the womb to be fertile, right? But you can totally bet that 99% of doctors advocating these things never owned up and said "oops, I was wrong".

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Thu Jul 28, 2016 5:30 pm 
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I feel super fortunate that the meds (an anti convulsant) that I'm taking for the chronic pain thing that's wrong with me (trigeminal neuralgia, Latin for your face just hates you) mostly work most of the time. I saw a resident along with my normal neurologist this quarter and got choked up trying to explain to this new doctor how amazing it is to not be in excruciating pain literally every day now.

Of course right now I am stressed and not sleeping enough and as a result my pain level is stupid high again, but it's not nearly what it was as recently as February.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Sun Jul 31, 2016 1:39 am 
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I'm glad your meds are mostly working, coldandsleepy, and really sorry that your pain is really high right now. I hope things improve for you again.

I'm really struggling to get through each day of work with my pain. If you all have any advice, that would be great. I have been effectively doing part time hours for the last few months while feeling terrible about the hours I wasn't able to do.

I do need to work. I don't have any other options at the moment. But also I WANT to work. I feel better when I am able to. But I'm saying that now after rest. In the moment it's so hard to remember that. How do you get through your must-dos (work or otherwise) when pain is kicking your asparagus? [No judgment if your answer is go home and take a nap instead!]

Also, thanks for this thread, Moon. I'm so sorry that all of you are in pain.


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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Sun Jul 31, 2016 6:16 am 
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I don't know if this would help anyone. I have osteoporosis, and at one point it was so severe I finally went on an osteoporosis shot in 2015. Thankfully I have not had side effects. I attribute my severe bone loss to a variety of factors...26 years on thyroid meds are the number one factor; being underweight for six years (normal now); genetics; first period wasn't until I was 16, last was at the age of 33 in 2005 when I had a total hysterectomy and the surgeon took both of my healthy ovaries. Surgical menopause has not been kind, and it accelerated bone loss.

I am also very active. Last April I sprained a rib, and it was terribly painful for quite a long time. it was very hard to lay off exercising, and I probably went back to it too soon and the injury continued to nag me for months. Finally I upped my calcium intake (through food AND supplements) as well as vitamin D. I was taking about 1000-1200mg calcium and 1000 IU vegan D3. I increased calcium to 2000mg temporarily and D to 1500 IU and after only a few weeks my rib soreness and pain disappeared! I don't know if there was something to the increased calcium, but I just had this feeling it would help. I didn't even read anything on it. It was just a feeling and something to experiment with. I have cycled severe rugged mountain bike loops (19 miles on one and 22 miles on another), danced full out numerous times (modern/ballet), lifted weights now and I don't feel the pain and soreness I felt for months. I may slowly decrease calcium intake back down eventually (don't want to risk kidney stones and other problems), but for now I am enjoying the healing it seems to be providing.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Sun Jul 31, 2016 7:18 am 
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I think the Vit D will help you absorb the calcium better Robinwomb, just be careful of your magnesium/calcium balance too. Sounds like you've had a rough time, it's great that you've found something to help!

I've been in bed since last Monday with a mixture of migraine and Ischial bursitis. On Friday night the migraines were lifting and I felt well enough to epilate my legs, only to wake up yesterday morning to find that it had flared the bursitis right up again. I think the bursitis is tied in with my fibro, as I don't do any of the exercises associated with Ischial bursitis. I was more active than normal the week before, digging out my spare room and think that's what did it. I'm too sore to sit and, at this stage, too much movement will aggravate it. So, I'm stuck with stretching out on top of the bed and rubbing arthritis gel on my arse 3 times a day.


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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Sun Jul 31, 2016 8:09 am 
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fezza wrote:
I think the Vit D will help you absorb the calcium better Robinwomb, just be careful of your magnesium/calcium balance too. Sounds like you've had a rough time, it's great that you've found something to help!

I've been in bed since last Monday with a mixture of migraine and Ischial bursitis. On Friday night the migraines were lifting and I felt well enough to epilate my legs, only to wake up yesterday morning to find that it had flared the bursitis right up again. I think the bursitis is tied in with my fibro, as I don't do any of the exercises associated with Ischial bursitis. I was more active than normal the week before, digging out my spare room and think that's what did it. I'm too sore to sit and, at this stage, too much movement will aggravate it. So, I'm stuck with stretching out on top of the bed and rubbing arthritis gel on my arse 3 times a day.


Thanks fezza! I have blood tests every six months while on this shot to measure blood levels of D, magnesium, calcium, and so on. Mostly they are looking for signs of hypocalcemia since the shot pulls calcium from the blood and puts it in the bones. My magnesium was on the high side of normal this last time. I take several calcium supplements, and one has magnesium in it. I also eat several cups of leafy greens each day (huge fan of spinach whether cooked or raw), and a few servings of beans which I assume all have magnesium in them. I love pumpkin seeds too. :)

I'm sorry about your pain. Sounds awful! It's really frustrating when helping one problem causes another. I hope you feel better soon! Kudos to you for doing what you can!

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Sun Jul 31, 2016 10:00 am 
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That's great to hear, robinwomb! My ovaries shut down some time in my mid-late 20s (they think), so I'm on high alert for osteopenia/osteoporosis. My doctor has me taking 5,000 IU of vitamin D daily, but not worrying too much about calcium (I consume quite a lot of fortified soy and almond milks and will occasionally supplement if I think about it) as well as lifting weights. Sadly, cycling isn't great for bone density/health (though MTBing is probably way better than road riding in that respect), but box jumps and squats are good for both riding and bones.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Mon Aug 01, 2016 3:30 pm 
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I sanded my bedroom floor this afternoon. I was thrilled when it was finally done as I've been putting it off for over a week now. Wasn't so thrilled when I stood up. I was in agony. It didn't even dawn on me that the vibrations from the machine would upset my back again.

Here's to hopefully staving off full blown muscle spasm.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Mon Aug 01, 2016 10:18 pm 
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Paperweight I hope you find the answer. I'm in a similar situation - I want and need to work, but the way things are going I may need to see about cutting my hours even more. I want to work but I also want to cook and do laundry sometimes and dress myself in something work appropriate. Unfortunately lately I can only handle one of those things in a day.

I'm in bed right now and it feels like I rubbed my legs all over with some sort of chemical - my skin is burning. My muscles are aching as though I spent the weekend running. My hips and lower back are stabbing. My shoulders and elbows feel arthritic. The connective tissue around my rib cage is sensitive and breathing is hard. My fingers are so stiff I'm having trouble holding my phone. Even the skin on my ears hurt.

Sleeping is going to be a blast.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Tue Aug 02, 2016 12:13 am 
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Drunk Dialed Ian MacKaye

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vixki wrote:
Rosie wrote:
I'm pretty fed up of not being able to walk or stand for more than a few minutes without crying in pain. I really miss going for walks, I like being out in nature. Whenever I mention it to my Doc, I get the 'It's because you're fat' thing. Yes, and you're an unhelpful dick.


They come up with any random excuse, don't they? I have trouble exercising, and my doctor's answer is "It's because you're unfit". Like...no shiitake I'm unfit, I can't exercise!


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


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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Tue Aug 02, 2016 4:24 pm 
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Moon wrote:
Paperweight I hope you find the answer. I'm in a similar situation - I want and need to work, but the way things are going I may need to see about cutting my hours even more. I want to work but I also want to cook and do laundry sometimes and dress myself in something work appropriate. Unfortunately lately I can only handle one of those things in a day.

I'm in bed right now and it feels like I rubbed my legs all over with some sort of chemical - my skin is burning. My muscles are aching as though I spent the weekend running. My hips and lower back are stabbing. My shoulders and elbows feel arthritic. The connective tissue around my rib cage is sensitive and breathing is hard. My fingers are so stiff I'm having trouble holding my phone. Even the skin on my ears hurt.

Sleeping is going to be a blast.


Ah, flare ups like that are the worst! I bought a dimmable light with a colourful shade for the bedroom, so I could lay and gaze at it on nights where I couldn't sleep for the burning skin and bones thing. At the time I discovered that I was borderline for VitD deficiency and boosting this and taking the magnesium (yes, that again!) eased the burning. I'm still prone to it when I overdo things, but it's nowhere near as bad now (it also got rid of my daily muscle spasms).

I'm having trouble sleeping atm, with the bursitis and the heat, now I have really sore boobs. fork.


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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Mon Aug 08, 2016 1:50 am 
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I'm currently experimenting with coming off my meds and just using physio exercises...

L4-L5 and L5-S1 disc herniations, trapped nerves yadda yadda

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Mon Aug 08, 2016 2:09 am 
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Tingly arms are making it impossible to sleep. My hands are swollen and stuff. I think eating salty or sugary foods gives me swelling that then impacts my spine. Mg and alfalfa help but I really just need to eat properly.

Plus my cholesterol is high and my insulin resistance needs to be managed. Apparently I am failing at being a healthy vegan, because veganism is supposed to be awesome for both. Plus there was a spot of concern on my breast u/s and I am scared of what that's going to be. Feeling like a total failure.

I just want to live long enough to enjoy my life and watch my daughter grow up and I am so scared I might not.

Hugs to all who are hurting!

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Mon Aug 08, 2016 5:26 am 
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LFL wrote:
vixki wrote:
Rosie wrote:
I'm pretty fed up of not being able to walk or stand for more than a few minutes without crying in pain. I really miss going for walks, I like being out in nature. Whenever I mention it to my Doc, I get the 'It's because you're fat' thing. Yes, and you're an unhelpful dick.


They come up with any random excuse, don't they? I have trouble exercising, and my doctor's answer is "It's because you're unfit". Like...no shiitake I'm unfit, I can't exercise!


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.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Mon Aug 08, 2016 9:34 am 
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Rosie, are you able to see a physiotherapist or occupational therapist? I think either/both of those might be able to help you find exercises/activities that you can do.

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 Post subject: Re: bisque and moan about chronic pain
PostPosted: Mon Aug 08, 2016 10:17 am 
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I woke up with the worst ankle cramp ever yesterday and last night I put KT tape on my ankle because it was bothering me as I was trying to sleep (also it is the same ankle I twisted, twice a week ago). My ankles bother me once in a while, but this is the worst its been.

I've also been having hip pain for the last couple months. Luckily, stretching and mobility exercises are helping me with the hip pain. I will often wake up with it, then I'll do stretches and it will go away until the next day. It has gotten better over time and I don't wake up with it every morning now. I definitely feel as I've gotten older that I have to make sure I do active maintenance.

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