What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our June edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.
MONTHLY MUSINGS
Burning. Stabbing. Aching. Throbbing. Dull. Have you used any of these words to describe pain? Highly subjective to each individual, pain is a sensory experience triggered by the nervous system. Some of the different types include nerve pain (neuralgia), muscle and joint point and arthritis pain.
If you’re living with chronic pain, it may feel like no one understands. But pain is actually one of the top symptoms reported at PatientsLikeMe, affecting more than 40,000 of you and playing a role in so many different conditions, from fibromyalgia to rheumatoid arthritis to lupus. Over half of you rate your pain as “moderate” or “severe.”
How are fellow patients managing this “invisible” symptom? Check out the pain symptom report as well as the hundreds of treatment evaluations for opioid painkillers such as Tramadol (Ultram) and Hydrocodone; anti-convulsant medications such as Gabapentin (Neurontin) and Pregabalin (Lyrica); and complementary therapies like acupuncture and massage. You can also join in on our forum discussions about pain for tips and advice.
Pain can make you feel alone – but you’re not. Connect with thousands of others who can relate and share experiences.
– Kate, Emma, Liz, Jeanette & Sharry
JOIN THE CONVERSATION
Have you poked around the forum recently? We now have lots of different rooms to meet your needs. For example, did you know about the Digestive and Intestinal Room, the Muscles, Bones and Joints Room or the Neurological and Brain Room? Find your favorite room(s) and check out some of these active threads below.
- Shifting from “I can’t” to “I can” (FM/CFS/ME Room)
- Can a strict schedule stabilize you? (Mental Health Room)
- When one spouse becomes a recluse (Parkinson’s Room)
- Dealing with diabetic neuropathy (Diabetes Type 2 Room)
- When to tell a potential mate you have MS (MS Room)
Need help with something on the site? Visit the PatientsLikeMe Site Help Room for answers from longtime members.
WHAT MEN HAVE TO SAY
Last week was Men’s Health Week. To honor the men in our community, we’ve spotlighted a few thought-provoking quotes by our male members.
“Along comes PD and life changes. Now, I get all anxious about having to be ‘on’ at parties and functions. But, I go to everything! My default answer is now yes instead of no because frankly it’s too much trouble to back out of everything I say yes to. I always enjoy myself and am glad I went. I push myself while I can and it seems to help. It is work, but it is worth it because it not only rewards me, more importantly, it rewards my wife.”
– Parkinson’s Pete, PD patient, 61 years old
“After a few days spent lazing about, I feel ashamed. I can look at this rationally and consider that in my current circumstances even surviving the day is an achievement but a lingering resentment at my inaction remains present nevertheless. I’m 50 years old, I’ve been unemployed for three months in my life, I’m now facing retirement and wondering whether I will be able to shake off this sense of negative self-perception.”
– Tommy Maker, ALS patient, 50 years old
I believe it was peripheral neuropathic pain from the colozapine I was on,
I tried 400 mg seroquel & it gave me amazing relief but a side effect that
had a painful pinching in my throat ruined it for me, there is a side effect
pill called cogentin that gave me good relief from the pinch but I got
side effects from the cogentin, I was on cogentin close to twenty years
ago & the cogentin was fine but not this time,
I recommend seroquel for relief, my arms & legs had been getting
numbness as a result from the colozapine, I highly recommend
seroquel for relief & you might get lucky, I had also been taking
seroquel as an anti psychotic, at 400 I had begun to get relief
immediately but possibly you may not need that much, 400mg
for my quote mental illness, I recommend trying 100mg to 200mg
of seroquel for relief, there is a regular seroquel & a seroquel xr,
I recommend it for a try, if you can get away with a seroquel
you’ll be happy with it, try the normal one first, the seroquel xr
was bad for a dry mouth,