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Antidepressants like amitriptyline for IBS
Incredible: I hadn’t heard of this up to now, and my 4 months of amitriptyline last year didn’t do anything except zombify me plus 7 further increasing sfx. But I’ve found evidence all over the place...
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Cotton? clothing / weighted blankets (tactile & mechanical allodynia)
Even certain cotton processing (occasionally even organic) gives me problems, even ‘detectable’ by my wife… Unfortunately even “100% cotton” is not 100% cotton… As far as I’ve read however, many...
View ArticleFM/a test bogus? - Interesting Article from "MedPage Today" and STAT news:...
Bogus Fibromyalgia Test? A blood test for fibromyalgia is based on shaky science, but still marketed directly to patients, luring them with the promise of a high-profile clinical trial that isn’t even...
View ArticleL-carnitine (LC), Acetyl-L-Carnitine (ALC), propionylcarnitine (PLC)
After hesitating as some use it more for brain fog, which I seem to fog over, I do now take 3x0.5g ALC, as it’s also may help just waking up in the morning, as well as energy/fatigue. Now...
View ArticleResearch Oct 2021: myofascial, lymph drainage & more
On a whim I looked for “newest research for us” - published Oct 21: "Myofascial therapy and lymph drainage … may be effective…" “Self-help groups and regionally available networks represent important...
View ArticleIs fibromyalgia really (primarily) autoimmune?
***in August 2021, Goebel after a mouse-study said fibromyalgia is (only) autoimmune, so some of us hawked that. But Martínez-Lavín commented: perhaps partly.That is what I also think, feeling the...
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Suffering
Hi! I miss going on this site. In a lot of pain. Wondering if LDN stopped working. Was denied long term disability. Now will have to take them to court. This is not social security. My mom isn’t doing...
View ArticleMumijo/Shijalit for inflammation, pain, fatigue & GI
also known as maumasil, mumie, moomiyo, mummiyo, shilajit/salajeet, kao-tun, brogschaun, arakul dshibal, = ‘oil/blood of the mountains’: Anti-inflammatory, pain & GI/IBS: Mumijo attenuates...
View ArticleAbout the Caregivers category
Anyone whose life has been touched by a rare disease is welcome in a Ben’s Friends community. Most of our members are patients, but we have spouses and parents, besties and caregivers here as well....
View ArticleJoining Care Givers
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect...
View ArticleAbout the Guidelines, Privacy, and Terms of Service category
What is different about a Ben’s Friend’s Patient Community. Our Privacy Statement and Terms of Use 1 post - 1 participant Read full topic
View ArticleHow is Ben’s Friends Different from Social Media and Other Support Sites?
Many people wonder how a Ben’s Friends community is different from social media and other support sites. The Ben’s Friends community for this rare disease is interested in only one thing: you. You as...
View ArticleCommunity Guidelines
This is a Civilized Place for Public Discussion Please treat this discussion forum with the same respect you would a public park. We, too, are a shared community resource — a place to share skills,...
View ArticlePlease pass this on to Your Caregiver
We know. Being a caregiver is tough: sometimes it’s challenging physically, and it’s always difficult socially and emotionally. That’s why caregivers now have a place to meet anonymously and support...
View ArticleNew! Caregiver Support Community
We know. Being a caregiver is tough: sometimes it’s challenging physically, and it’s always difficult socially and emotionally. That’s why caregivers now have a place to meet anonymously and support...
View ArticleCan you help us out with Facebook Giving Tuesday?
On Tues November 30 Facebook is matching all donations up to 8 million dollars. Can you help us out? We know patients are stretched thin and we are NOT asking you to participate unless you are able....
View ArticleGiving Tuesday on Facebook: Part Deaux
On Tues November 30 Facebook is matching all donations up to 8 million dollars. Can you help us out? We know patients are stretched thin and we are NOT asking you to participate unless you are able....
View ArticleA warm welcome to our new members
Hi there @Nel and @Pwill020, My name is Sara and I am a Ben’s Friends intern. I really enjoy welcoming new members and wanted to take a moment to reach out. @Pwill020 I’m so sorry to hear about how...
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Pain and doctors
So this year has been totally focused in on my pain. I’ve now tried everything that everyone has recommended except for Ketamine (which will be later next year due to insurance). I’m on LDN which...
View ArticleFibromalgia & COVID-19 research
This study published Nov20 (Europepmc-link / Physician’s Weekly-link) and then Jun21 (Pubmed-link / ClinexRheu-link) shows a considerable increase in FM-symptoms from CoV. whilst this “review”...
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