Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Trigeminal neuralgia, fibromyalgia, osteoarthritis and migraines

Jun 27, 2016 8:50 PM

Hello I am just entering the group.

Jun 27, 2016 8:58 PM

Was on 3600 MLS a day Gabipentan. Feeling the harsh withdrawal due to not being able to afford it for two weeks:( my TN is flaring today burning in left side of nose, cheek and oh lord....the random lightening bolts. So tired of never feeling well. I could cry....but that causes the TN to flare quite badly.

Jun 27, 2016 9:39 PM

How do I re do the body thing? I put my finger on the wrong spot so now it shows pain in my groin/hip area. I want to show the plain in my head/face

Jun 28, 2016 9:56 AM

Welcome to our community family Vanderhoof! I'm sorry you are in pain. I have every one of these dx you do, plus others. My TN tends to come on right before I get a migraine, like an aura. But it started after a fall where my head struck the concrete, bounced & struck again. I also have cervicogenic headaches due to spinal issues, and they also trigger migraines. I went through epidural steroid injections (ESI's) twice for the neck region (C6-T1 levels), 6 injx in all, at a pain specialist clinic 2012-2014. I've only had a few cervicogenic & migraine headaches since, and the TN is much milder when it comes on. Have you seen a pain specialist to see if/how they can help; or a chiropractor, massage therapist, or any other specialist? Since the meds aren't working so well maybe a specialist could help. I've developed TMJD in the last few years, due to bone & joint deterioration. Sometimes the TN will affect the TMJ, and vice versa. I place microwaved rice filled tube socks (or frozen) on my face and it sometimes helps. I also use pain relief ointment (Voltaren gel rx).

I've had spine issues since the 90's. And i was working until 2010 when major surgery led to where I am today. I've had other chronic issues in between those years too. My dx list is too long. I had a doctor tell me once it's be easier die, and his nurse smacked him! Lol. I considered myself really healthy back then (2003). My fibro started in 2007 but wasn't dx until 2012. And I've gained many more dx since. At first I couldn't function well. I'm allergic to most pain & psych meds, so I'm very limited on what I can take. On an avg day my pain was a 7-8, until I'd have a flare up. They tried cymbalta that worked for six months. Then I started having adverse side effects, to the point of suicidal ideations. I was weaned off too quick and that made it worse. My pain got worse and then they dx sjogrens, an autoimmune disease (AI); I have 3 AI now. Once I started on plaquenil my pain dropped to a 3-4 daily avg. Wow, at the relief! I have many other chronic pain conditions, but with this manageable I'm doing much better than I was between 2012-2015.

However, it's not all due to just meds. From others here I've added supplements like D3 & magnesium, both which were low in my blood work. I also have learned to relax my body, do mild stretching, & light hand weight & walking exercises. When I'm in a flare and can't exercise or stretch, I hurt worse. They've proven that moving and light exercise is beneficial for many issues causing pain, like my OA & fibro. But one of the most important things is learning to listen to my body, to the signals it gives me that say stop, don't do this activity, or rest. I pace my activities with rest periods between. And things that cause difficulty or pain I've given up. I now ask family to do them (mop, vacuum, sweep, etc). I can't get in/out a tub so I take warm but not hot showers, which loosen up the stiffness i have every morning. I have an imbalance & dizziness that caused me to need a cane or Walker. And in large stores I use a motorized cart. And I don't beat myself up about things I'm incapable of doing. It took me 4 years to grieve the losses and changes in my life, to come to terms with & accept me as I am now, to accept that I'll never work again. It's like my old life died; hiking all day, beach walking for hours, lifting 40-50lbs at work (barely lift 1 gallon now), sewing, cross stitching, flea markets, gardening and yard work, baking & decorating cakes, cooking large meals (I reheat only no- hubby cooks), etc. I've had to give up all these and more. It was like grieving the loss of a loved one, with all the feelings that go with it. But I've finally reached a place of peace. Being a Christian, my faith in God has been a big support line. But the people in this community has become another large portion of support, and my hubby closes the gap with his support. He's my advocate now, due to memory loss/dementia. He goes to almost all appts, except rechecks.

I hope as you get acquainted with the app & community members, you will also find great support. We do our best to help each other in various ways; questions answered, shoulders to cry on, ears to listen to complaints or rants, suggestions to make, positivity, prayers, hugs, however we can. We even share a laugh or two. I think you'll find lots of help here.

As for the body drawings, when you touch an area by mistake, just color the whole body in the lightest color, then use the next appropriate color to mark your pain areas. That's how I do it, because there is no eraser in the coloring pad. **Need erasers in app drawing**. We are all different, and not everything works for everyone. Be open to trying alternatives where you can. Hugs & prayers as you find your best coping methods! 🙂💕🙏🌼

Jun 28, 2016 10:02 AM

Mine has an erasor I have used it several times tying to get used to the app.

Jun 28, 2016 10:03 AM

I think I got it figured out:) thank-you.

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