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I’ve been avoiding ‘night shade family’ vegetables (bell peppers, eggplant, tomatoes, potatoes, etc.) and now find that when I do eat them I get more fatigue and moving around becomes noticeably painful.
It is a reminder to stick to my salads, steamed broccoli and lean protein sources like beans, fish and poultry.
Managing my own diet is like running a science experiment for an N of 1.
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Laughter definitely helps me to deal with pain. Sometimes when I’m doing yoga I look around an laugh at how much different I seem to be moving than some of the others around me despite decades of doing yoga. I’ve never been to a laughter yoga class. I should add it to the list of things to be on the look out for near my home.
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That is outrageous, Noki4, that the insurance company is taking over treatment decisions. I agree that your doctor’s training and the longstanding relationship with you should outweigh what an insurance company administrator has to say on the matter of what will work best for you.
Have you found any help from your Senator’s office? Sometimes they have caseworkers available to help constituents find care or overcome red tape.
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Nice post. I find that yoga practice makes me more aware of how my body moves. When I’m regularly practicing I feel more secure moving about the world and I perceive less pain then when I skip a few days and am stumbling about the world.
Like Noki4 says, the motivation to get out of the house and socialize with others is a definite plus and likely contributes to less perception of pain.
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This is like the #PainTamer videos on The Pain Community’s Instagram channel. I have seen some great visuals in the videos to use for meditation. The videos are also on The Pain Community’s Facebook page.
I really hope more people will submit videos of their #PainTamer Tips and Tricks. We have so much to learn from one another.
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Three years on I can report that most of the supplements are being tolerated. The herbs and spices didn’t work out very well for me because they aggravated or worsened my GERD problems.
That core group of supplements really seems to help me. I’ve been off of them for a week or two at a time in preparation for medical procedures or testing and each time I have felt fatigue engulf me and my pain increase by day 7. Also I develop lots of bruising if I stop taking vitamin C.
Has anyone else experienced anything like this where they have noticeable symptoms after a break from taking supplements?
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I think we are all always looking for “one more thing to try” in our search for the right mix of things to manage our pain.
I have had to use a far infrared heating pad quite a bit lately to manage my lumbar pain. Spondylolithesis and arthrodesis have been flaring up. I think it is because I was traveling for a week recently and wasn’t as regular with the pt exercises that keep things tolerable.
Ice makes it worse for me. Anybody else have that problem?
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Circling back to comment that I’ve linked my vertigo associated with my migraines to autonomic issues.
It is very frustrating when it happens.
For now, regular acupuncture treatments have been helping to keep the vertigo and the migraines under control quite well.
Plus the usual mix of sleep management, diet management, meditation, hydration management along with the usual mix of hopes and prayers.
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Great new resource created in the UK:
“The Royal College of General Practitioners (RCGP) has launched an Ehlers-Danlos syndromes (EDS) toolkit for GPs and healthcare professionals. The toolkit, created in partnership with EDS UK and funded by the charity, aims to improve the recognition, response to and management of EDS in primary care.
The toolkit sets out the latest thinking in EDS, including the new approaches to diagnosis and treatment set out by the International Consortium on the Ehlers-Danlos syndromes in 2017, as they relate to primary care. It offers a comprehensive guide to approaching the management of people who have EDS in a primary care setting, as well as indications for onward referral.”
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The politics around effective pain management have become more out of control lately. It is terribly unfair, nee torture, not treat people with chronic pain. Honestly, those politicians who draft and pass laws with dosing limits are practicing medicine without a license. Maybe a class action lawsuit in Ohio or West Virginia along those lines would have an impact to get the pain management pendulum swinging back in a more humane direction.
Trouble is, we are people with pain barely making it through the day and we have limited financial means to hire an attorney.
Until we reach that point, we need to tell our stories in a public way. I had lunch with a cousin yesterday who has had his opinion altered from an ultra conservative position advocating more restrictions three years ago to a more humane position acknowledging that the restrictions have gone too far and are not having the intended effect on the ‘opioid crisis’ based upon news stories with accounts of people’s experiences.
Let’s keep sharing our stories.
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Welcome, Johnsontic,
Welcome to The Pain Community. Have you checked out some of the blogs and education resources? I find that it is empowering to learn more about pain and management options. It takes so much to bring the pain down to a level that I am able to get out and about or even chat online.
FredFriend
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Hi Terri,
Welcome to The Pain Community.
It is so very isolating to live with pain that limits our ability to get out and interact socially. I find that the unpredictability of when I will be feeling up for an outing makes it a challenge to plan things.Like Kristy, I have found people in my community with the same condition I have that are eager to meet at a coffee shop or in a park for some in person support. The chat rooms here are a great respite for when I’m stuck at home and feeling a bit lonely.
FredFriend
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