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Author
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Topic: Cannot take most meds used for agonizing continuous pain
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Lexxigramer
Moderator Posts: 6115
From: The Etheric Realms...Still out looking for Schrodinger's cat...& LEXIGRAMMING.♥.. is my Passion!
Registered: Feb 2012
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posted August 10, 2017 12:19 AM
  
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Lexxigramer
Moderator Posts: 6115
From: The Etheric Realms...Still out looking for Schrodinger's cat...& LEXIGRAMMING.♥.. is my Passion!
Registered: Feb 2012
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posted August 10, 2017 01:07 AM
* quote:
Originally posted by Magikaal:
Lex, sorry to hear about all these conditions you have to live with and even more sorry to hear about what you went through.
Thank you for caring Magikaal. 
quote:
Originally posted by Magikaal:
I don't know much about most of your ills except maybe a tiny bit for ankylosing spondylitis (AS) which my partner has. When I met him, he was taking gelatin and occasional glucosamine supplements along with a steady stream of painkillers for the flare ups. Our running joke is that he is the master of soft furnishings since he cradles himself with towels and pillows every night to support himself. He told me all about tossing and turning and not being able to sleep properly for years. I suggested fish oil capsules (omega 3s) which he didn't believe in at first - he's a huge skeptic of natural methods but it made such a difference that he has been taking fish oil capsules every night for the past 6 years despite complaining bitterly about fishy burps etc initially. He gets the odorless ones now but they are expensive. He does not take as much medication now compared to previously but his condition still flares up from time to time.
Sorry your partner has AS. Even alone that is extremely painful. 
Due to several other conditions I cannot be a "master of soft furnishings". I sit on a hard chair and the floor or a padded piece of plywood does me best. I have to cradle my neck and head constantly or my neck goes numb and I get black blindness episodes from even light pressure to the sides of my head or cheek bones. I have pretty much not sat on soft things for over a decade. A soft chair or couch will usually bring on temporary paralysis from the hips and even the diaphragm down. And no; it os not caused by bad circulation, but by a few neurological conditions; some of which are Chronic inflammatory demyelinating polyneuropathy (CIDP); Polymyalgia rheumatica; Aphasia; Complex Regional Pain Syndrome; and RA, and Osteoarthritis and Cauda equina syndrome, and other things.
Gelatin and glucosamine did not help at all.
Almost 30 years disabled; so have pretty much tried everything.
I like the fish oil and all; but it does not seem to do much; and unfortunately raises my cholesterol.So I still take them but sparingly.
quote:
Originally posted by Magikaal:
The other thing that came to mind is diet, specifically the London AS diet based on the research of Dr Alan Ebringer and colleagues. Some AS sufferers online have reported positive results when they followed it but the diet is extremely restrictive. I can't convince my partner the skeptic but am curious if you have tried it. If you haven't, I thought that trying it might bring some relief, at least from the AS component. You would have to follow the diet strictly and reduce/eliminate starchy foods. If you aren't familiar with it I would encourage you to find out more. Diet alone won't fix everything obviously but it's a start. I liked The Positive Pear's site https://thepositivepear.com/tag/the-london-as-diet/ as one example of a holistic approach.
Being a Diabetic type 2,
and due to other ills;
yes have done and must do a variation of this diet.
Does not seem to alleviate any pain though. And lacking many teeth; well chewing is hard to do.
Add in that veggies make my digestive ills worse.  I eat them anyhow but they cause me more pain too often.
Also living far below the poverty line; at times have no choice but to live on rice and beans and such.
I totally love greens and veggies but they are usually not something I can realistically afford or chew or digest properly.
Fruit raises my blood sugar a lot.
Sadly due to Dysphagia and Oropharyngeal dysphagia along with GERD and a Hiatal Hernia; and throat often going numb... creates unfortunately a problem; using a blender to do smoothies of fruits and veggies I choke on such "liquids".
quote:
Originally posted by Magikaal:
I can't think of anything else but my sincere best wishes to you for dealing with the pain. My partner tells me his flare ups are excruciating so it must be infinitely worse for you. i don't know how you do it.
I do not deal with it well as it becomes worse. But my choices are keep going or die.
like I said at the top of page 6;
Thoughts of suicide keep me from doing myself in for the time being. If I get so bad I would need to be in a rest home; I would most likely end it immediately.
Thank you again for caring Magikaal!
PS. Please pardon any typos; vision wonky tonight.IP: Logged |
Magikaal
Knowflake Posts: 518
From: Oz
Registered: Apr 2016
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posted August 10, 2017 12:23 PM
@Lex
I felt sad reading your reply. I hear you about the rice and beans, I've gone through quite a few rice/beans phases myself. I was wondering, Can you get any extra financial assistance (depending on what country you live in) from the government? Where I live (Australia), we have so-called disability pensions. I'm not sure that you have them where you are (I'm assuming you are in the US).And re the chairs (am looking for one for my partner - his has worn out giving him back ache) would a special hard(?) ergonomic chair help? Chairs really are the devil I think if you have to sit for hours a day. The only other thing I can think of is Gofundme for a special chair for you but otherwise I'm out of ideas. IP: Logged |
Randall
Webmaster Posts: 83519
From: From a galaxy, far, far away...
Registered: Apr 2009
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posted August 11, 2017 01:34 PM
IP: Logged |
Lexxigramer
Moderator Posts: 6115
From: The Etheric Realms...Still out looking for Schrodinger's cat...& LEXIGRAMMING.♥.. is my Passion!
Registered: Feb 2012
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posted August 11, 2017 07:54 PM
quote:
Originally posted by Magikaal:
@Lex
I felt sad reading your reply. I hear you about the rice and beans, I've gone through quite a few rice/beans phases myself. I was wondering, Can you get any extra financial assistance (depending on what country you live in) from the government? Where I live (Australia), we have so-called disability pensions. I'm not sure that you have them where you are (I'm assuming you are in the US).
Already getting disability income for myself. But for two people who are both disabled; a little over a $1,000 a month does not cover out of pocket and utilities and food, toiletries, laundry, repairs of home and car, and vision and dental costs;etc..
This is as good as it gets.
My husband did not earn enough Social Security credits to be able to get disability income and apparently about $525 per person a month is all they think we need to live on.
They even took away much of our Medicare and Medicaid medical/dental coverage. quote:
Originally posted by Magikaal:
@Lex
And re the chairs (am looking for one for my partner - his has worn out giving him back ache) would a special hard(?) ergonomic chair help? Chairs really are the devil I think if you have to sit for hours a day.
Yes already have a chair I live most of my life in. It is not a fancy or medical grade one; but works well enough. I just need to get a new lumbar pad for it. Got very lucky as it is like a $250 chair I got almost new from GoodWill for $8!
I'd be lost without it! quote:
Originally posted by Magikaal:
@Lex
The only other thing I can think of is Gofundme for a special chair for you but otherwise I'm out of ideas.
Yes; need to look into Gofundme. Not entirely sure how to though.
Also; any gifts or other income; even selling one's possessions is counted against poor people. They will dock more medical coverage if you make more that $50 extra a month over disability; and dock it from your disability or food stamps. It is complicated and maddeningly depressing to say the least. Thank you for caring!
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Lexxigramer
Moderator Posts: 6115
From: The Etheric Realms...Still out looking for Schrodinger's cat...& LEXIGRAMMING.♥.. is my Passion!
Registered: Feb 2012
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posted August 11, 2017 08:04 PM
quote:
Originally posted by Randall:
Thank you for caring Randall. IP: Logged |
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