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CatchMyPain Community and Pain Diary App to manage chronic illness

Hello

Aug 17, 2016 10:13 AM

I'm new here. Been feeling a little isolated since diagnosis. No seems to understand...hoping to meet some new friends who do.๐ŸŒน

Aug 17, 2016 11:10 AM

Hello Jenni I'm Tina. I'm fairly new to this only joined yesterday. I understand how you feel I been diagnosed 2 month ago with Ms and serious no one seems to understand at the moment on how I feel. There a some real lovely people on here who you can talk to.. We all seem to be in the same boat! ๐ŸŒน

Aug 17, 2016 3:40 PM

Hi JJ ๐Ÿ˜š
Its so nice to meet u hunni, ๐Ÿค— there are many๐Ÿด friends here... old ๐Ÿชand lots of new ๐Ÿซ... all of us understand what u are going thru on one level or another.... ๐Ÿ˜˜ u will find ๐Ÿ‘so much support from genuine๐Ÿ’‘ friends... read up on some posts... and u will soon find ur feet ๐ŸŒน... above all ๐Ÿค—welcome to our family ๐Ÿ˜š

Aug 17, 2016 11:52 PM

Hey jennijellybean I know how you might feel. It took me a long time to be good with who I am and to accept that Im the only one who can comfort me. Ppl will try and you will be able to genuinely appreciate it. I hope to get to chat with you and hear from you from time to time
Instagram : GemStoneStrong
Snapchat: Gemilandia

Aug 18, 2016 12:21 AM

My name is Elaine and I have had fibromyalgia since 1989. I was able to work as a nurse up until 2011 and have been on full disability until my Social Security started.
I have tried very hard not to use opioids but have as my strongest medication Tylenol #3 along with ibuprofen. When I am in a lot of pain I use a powder that is a muscle relaxer It is called CalMax.

I have bipolar 2 and ADD. For the last three months I have experienced a lack of motivation to do anything and have been spending up to 12 hours a day watching Netflix And Amazon prime.

It was explained to me by a psychologist that because I have had fibromyalgia for so long and work I have been ignoring my body signals that I was in pain and need time to recover. She said it may take up to a year for me to become motivated again. On Monday I saw both my psychologist and primary doctor. On the way home it was like a light switch for power came back on and I was my old self again. My challenge is to not overdo it. As a nurse I know what to do but it's not as easy to do it when your the patient.
The best thing I can say to you is to listen to your body be honest with yourself and verbalize to family and friends around you how you are feeling in numbers such as 10/10. 10 being great 1/10 being horrible. The pain scale is 10/10 too is 10/10 is unbearable "like slamming your finger in a door". Remember you cannot see pain the numbers help people understand and empathize with how you are feeling. My prayers are with you in this journey.

Aug 18, 2016 1:18 AM

๐ŸดDaniel did a good article on "the pain scale"...๐Ÿ“– have a search for it as its rather good ๐Ÿค—

Aug 18, 2016 1:23 AM

I'm off work but am a social worker so I get the scale thing. It's just nice to be around people who don't have 'that look' they don't believe. I have been sleeping 15+hrs a day...and some days not at all. So it's hard to cope right now.

Aug 18, 2016 2:43 AM

I taught my patients to think of 5/10 as "you feel like getting out of the chair and 6/10 you do not. Motivation to move is the key. It really can not be forced. Sometimes "pain" is not what is felt, just unmotivated.
When I am motivated I have more pain but I am able to ignore the discomfort unless I think about it. Then I realize I need to slow down- eat some protein, drink fluids, take CALMAX, lay down while spend time with my service dogs, SCRAPPY AND SCRAP-BELLA. In otherwords, LISTEN TO THE CUES MY BODY IS GIVING ME. I feel my pain in my rib cage. Anxiety, tiredness and hunger all cause my stress to manifest in my ribs, my weak point because I had viral myocarditis that went into intercostal chondrites and then fibromyalgia in 1989. It takes time to not only understand your body but to also listen to what your needs are and why. You really need to listen to family and friends and cut yourself some slack when people tell you " you are mean and bitchy when you are in pain".

Aug 18, 2016 5:24 PM

Welcome to our growing community family JenniJellybean, Tina44, EWright50! It's sad so many of us are suffering chronic pain, but it's a blessing to have found others who can understand and relate. We listen without judgement, allow each other to cry, vent, laugh, pray, or whatever is needed. As you settle in and find suggestions, just know we are all different and no one thing works for all of us.

Although I suffered chronic back pain since the 90's and fibromyalgia symptoms started in 2007, I worked until 2010 when I took a leave for major surgery, hoping to eventually return to work. My health continued to worsen as diagnosis after diagnosis was added; so many causes of chronic pain issues. I felt so lost and alone, and like a failure, and then I found this community family. My real family didn't understand, nor could they give me the support I needed. Through the community family I have learned new ways of coping, like exercises, stretches, vitamins & supplements, and even info to ask my doctor's or research. I finally accepted my new life as i am today, filed for disability, and take every day one step at a time. Even on really bad or painful days I try to find something to be thankful or positive about. Finding something to enjoy our laugh about helps (& Lulabel & Terrirulesnotmypain are both good at helping us laugh!). My faith is also my biggest comfort and strength. I hope each of you will find the support and coping methods you need. Hugs love & prayers for all! ๐Ÿ™‚๐Ÿ’•๐Ÿ™๐ŸŒธ

Aug 19, 2016 3:56 AM

My husband Ken and I have known each other as friends since 1966. We are both nurses. my husband has learned about how to help people that are in chronic pain. He works at the hospital and he is constantly seeing two partners with one taking care of the other. He is my wonderful support system. For the last three months since May I have been unmotivated not depressed. On Monday of this week the light switch the power went on now I have to be careful not to overdo it and flareup my Fibro. It has been difficult for me. I keep falling into the caregiver trap. Wanting to help and not always listening to my body.

Something I'd like to share is what I call a Fibro storm. This is pain that is uncontrollable screaming wavelike pain 20/10. For me it was caused from my grandson being in a life threatening situation and my son being a Jackass and feeling there was some else other that was better than his wife. Both were things I could not control but hit me hard.
admitted to the emergency room for pain so bad that it was coming in waves and I was screaming, holding a pillow over my mouth๐Ÿ˜ฌessentially it was pain of 20/10. My Grandson had been in an accident and my son was being a jackass and treating his wife as if she was not someone important anymore wanting to go out with other women.

I i've never experienced this kind of pain. And I hope I never do again. It truly did feel like a storm.

In October 2014 my grandson and my son were at work I had a sense to call Jereme. Both Son and grandson are Jereme.

When I called them I said "nothings wrong just wanted to call and say good morning."

Later in the day I came to my desk and found a coin that was gold in color and had an angel on both sides. Since my grandson has a middle name of Michael I realized I needed to be thinking about him. I looked up about the coin and found that it was a coin that brought good luck. I've never seen this coin before and I do not know where it came from.

As I thought about the coin I thought about a passage that releases the angels to protect you in the 91st psalm. I had a plaque in my home so I got that And laid it aside for my grandson.

Throughout the rest of the day I kept misplacing the coin and having to go find it so I was thinking about my grandson all day. That evening my grandson called and asked "why did you call me grandma" and I said "no reason. Just to say I love you, and have a good day".

He proceeded to tell me of how his day went. "There was an incident today I was drilling a hole in a concrete wall with a 2 in bit inches. The plans didn't show anything in the wall. I hit a wire that keeps the cement strong by going corner to corner and the wall exploded on me."
"I got up without a scratch the drill I was holding was destroyed.

Aug 19, 2016 2:31 PM

EWrght, God does work in mysterious ways. I'm so thankful your grandson wasn't harmed! I understand the unmotivated feeling, as well as depression. My depression is under control. But I still high not being motivated. It's seems to be worse when I feel overwhelmed. And Wow, awesome, congratulations on knowing each other since 1966! I can only remember a few schoolmates names from them, or even high school for that matter. Lol, at least now I can blame fibro fog! Thankfully I've never had a fibro storm, but I've had migraines hit a 20 and ended up at the ER both times. Hugs love and prayers you never have another one! ๐Ÿ™‚๐Ÿ’•๐Ÿ™๐ŸŒธ

Aug 19, 2016 2:33 PM

EWright, have not high... then not them...

Aug 20, 2016 7:48 AM

It amazes me every time I have pain I have a hard time dealing with it is because the barometric pressure has dropped. For me, I raise my legs so they stop twitching, lay down to stretch my neck and ribs then take my stupid pain medication. I can usually tell there is a storm coming within 24 hrs. Have a lot I want to do today.

Aug 20, 2016 7:50 AM

I would call your migraine 20/10 your storm.

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