To close out this week’s blog series (“One for All”), we bring you an interview with another noted “welcomer” from our Fibromyalgia community. Meet Babsie. A member of the 19,000-member community, she has commented on hundreds of patient profiles to date (which is highlighted in a graphic on Jeff Cole’s earlier blog here). Read on to hear what Babsie has to say about why she joined the Fibromyalgia welcome wagon and what keeps her going.
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(Liz) Yesterday, we heard from MS community member, Diamondlil58, about her experiences welcoming members. Why did you start welcoming people to the Fibromyalgia community? |
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(Babsie) Someone welcomed me, and it made me feel good. I never saw them on the forum, so after a few months I was curious and seeing the new patients without any subscribers or comments I would subscribe and make a comment. |
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(Liz) What type of responses do you get from people you welcome? |
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(Babsie) Always favorable and kind. Some prayed for me and others became friends outside of PatientsLikeMe. |
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(Liz) Do you keep in touch with people you welcome? |
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(Babsie) Yes, in the forum; it is easier so I encourage people to post there. I monitor the Patients Tab and if they update I respond. I can also look at my own subscribers anytime I wish to send them a Private Message. |
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(Liz) What is one thing you’ve learned from looking at new member’s profiles? |
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(Babsie) Invisible disease is no respector of persons, young and old, their economic status – does not matter. |
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(Liz) Do you feel more engaged with the site and its members as a result of the Welcome Wagon? |
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(Babsie) Yes, if I am feeling isolated I go and invite others to participate. |
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(Liz) Thanks for all the connections you’ve made just by inviting others to participate, Babsie! |
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Since my primary illness is SPMS and my scant activities are more on the MS forum, I haven’t checked into the Fibro one till now. The discussion on Lyrica or Cymbalta prick my curiousity as I’ve been taking Lyrica for almost 2 years.
The Lyrica has made a significant change in some of my neuropathic sx in that I have far fewer MS-Hug attacks and when they come they’re much shorter; my RLS has calmed down to almost nothing; my TN is not as acute and only reminds me of it’s existence here and there.
I started Lyrica at a dosage of 300 mg daily and gained about 4 kg during the first 6 months. which caused me serious hysteria (I’ve always been way too preoccupied with my own physical self image – a leftover from the Twiggy years). I cut the dosage to 225 mg daily and dropped about a kg. The result over time was some serious neuropathic pain from the bottom of my skull up through the left side of my head. It began unbearable and my neuro told me either to come get hospitalized for a steroid treatment or to add another 0.75 mg of the Lyrica. Since I don’t ever want steroids again, I upped the Lyrica and after a few weeks the pain calmed down and became more a shaddow 🙂 .
True that we sometimes think “pudge or pain” and I usually opt for the pain, but I’m finally coming to terms with the effects of MS + FMS, degenerating scoliosis, and age on my drooping muscles and “treating” myself to that extra drop of Lyrica that makes life more comfortable.
Wishes for less pain for everyone and a pain-free day now and then 😉 .
Peace & Serenity,
Maris