Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Rate Each Day

Dec 29, 2015 12:07 PM

Hello all. I am new to this app. I am dealing with chronic pain and fatigue (diagnosed with FMS in 2014, but have been living with it since I was a teenager). My two sisters have since then also been diagnosed with Fibro. I also have Endometriosis, and although I've had a hysterectomy, I still have Endo pain which flares my Fibro. It's a vicious cycle.

Right now, I rate each day based on what "normal" daily tasks I am able to perform. On great days (rare), I can put on make-up. Good days = I can wash my hair. Fair days = sit up in bed, and will myself to the bathroom to brush my teeth. (Sometimes I take breaks between brushing top teeth and bottom teeth.) Poor days = Stay in pjs, and nap all day long. Awful days = . . . I don't like to dwell on those days. Let's just say I've gone to my MD in tears more than once.

I am really glad I've found this site.

Dec 29, 2015 1:16 PM

Hey Cajen, Big Welcome to you! I so get your rate system! I do not have fibro but I do have other chronic pain and disease processes that I am learning and relearning how to deal with one day at a time, sometimes one task at a time.right now I am working on my self-talk.... I am finding that the way I think really does affect my ability to even get out of bed some days, it is a struggle but I am grateful. Can't wait to get to know ya. There are doing many wonderful people using this app. They are strong and very loving! Ty for posting! Love and Blessings, Terri

Dec 29, 2015 1:18 PM

There are wonderful people using this site! (/not doing)/lol silly typos Terri

Dec 29, 2015 2:21 PM

Thank you! I am reading older posts, and am already feeling like I know some of you. I keep seeing Jenna's name pop up, but don't know her story. Can you direct me to her posts? Or tell me her situation?

Dec 29, 2015 2:40 PM

Alwayz or Newfibrogirl can give you lots more information about Jenna. I know she is in the hospital in an medically induced coma, at this time. The doctors are trying to "re-set" her brain signals, she experiences an enormous amount of pain everyday, has lost too much weight, and more. I have not posted with her cuz I am new here too. Right now while she is in the coma, this community and those who want are keeping a prayer chain going,until she is awake and thriving. You can read more on this ...topic: update in Jenna. That's all I know. I just keeping sending love and prayers through out the day, myself.hope this helps.Terru

Dec 29, 2015 2:40 PM

Cajen, welcome to our community family. I'm sorry that we have to meet you due to these circumstances but I am glad that you found our group. Terri is right, there are many wonderful people here and we are all here for different diagnosis but all share chronic pain issues. I've been in pain for 22 years, have had 29 surgeries in that time and have been diagnosed with Fibro, RSD and a laundry list of things that cause pain. Know that here you will never be alone and there will always be someone here to help you when you are having a bad day. We are also here to celebrate victories and happy days as well. We pray for one another, hold one another up, love one another, give and get advice, ask questions and sometimes just bitch and moan. That's ok too, we all have days like that and there are no judgements here and no apologies necessary when you need to get something off your chest. So, welcome to the family, I look forward to getting to know you and I hope you find the understanding and support that you need with us. Gentle {{Hugs}} and prayers.πŸŒ»πŸ™πŸ»

Dec 29, 2015 2:44 PM

Alwayz did you get the sunshine I sent ya? It's from my heart but maybe it willake you feel a little better.Terri

Dec 29, 2015 3:13 PM

I always get the sunshine you send from your heart, Terri. It's pouring rain outside and it's raw and damp. It's ok, just your message alone warmed my heart and lifted my spirits. {{Hugs}}πŸ’•πŸ™πŸ»πŸŒ»

Dec 29, 2015 3:58 PM

Welcome to our community family Cajen! I'm sorry you have fibro & endometreosis. I also have them, and had a hysterectomy in 1995, followed by oophorectomy in 2003. And unfortunately I've had even more problems with surgeries. I'm 54, and was working a full time job until 2010, when I had a large pelvic mass removed, during a 5 in 1 surgery. Both endometreosis & adhesions were involved, as well as the start of my fibromyalgia and autoimmune symptoms, appx in 2006-2007. I've not been able to return to work due to complications & additional medical dx.

Having found this community has helped me pull through the depression and desolation I was beginning to feel. Up until last year I was in total denial that I will never be able to return to work; my PCP confirmed it this year. Being able to communicate with others who understand chronic pain & the multiple diseases/conditions I have, others who can provide suggestions or share experiences, and being able to share my own experiences without being judged (as lazy, hypochondriac, or psychologically unstable) has been a wonderful blessing. It also helps me stay positive and help others. Positive thinking helps me function better, though we all know staying positive all the time is impossible... but I try. No matter how bad I may feel, there is always someone else who is worse than I am, whether for the day or permanently (like Jenna, who was placed into a coma to help her body recuperate). We can rant, cry, question, joke, just chat, or pray together, and no one is judged.

I like your rating system. Thankfully I have had much less days in bed since my Sjogrens dx this year. I was started on Plaquenil and it has also helped my fibro symptoms. My avg daily pain dropped from a 7-8 to a 3-4, even though there may be areas that hurt worse than others.

I hope as you settle in you will find the support and friends that I have found. To me this group is an extension of family, only better; we all understand chronic pain & how it affects us from day to day, hour to hour, or minute to minute. I have very strong faith in God, which is key to surviving this very hard struggle through life. And through His grace I've met just the people who can and are my greatest support day to day. Taking life one day, one event, one step at a time, that is the second key to surviving. Listening to my body and the signals and taking time to rest when needed, not overdoing it, that's my third key to surviving. Good luck & God bless you as you find what works best for you! I will keep you in my prayers. (((Hugs))) πŸ™‚πŸŒΌπŸ™πŸ˜·

Dec 29, 2015 6:51 PM

Thank you Flappys. I have a good support system in real life, but struggle with the feelings that they don't really understand how I could feel tired and miserable basically all the time. I get lots of "you poor thing" looks. It kills me because I don't really want pity. Pity makes me feel like "I lose" no matter what I am trying.

My MD recommended Biofeedback and yoga for Fibro pain relief. Have you ever tried those? I also had an oopherectomy (have 1/2 ovary left). Endo pain returned within the year, even before I was done healing from the surgery. I have the option to remove that last bit of ovary, but am scared of the fatigue associated with recovering with Fibro. Can't decided which is the better of two evils.

Did your Endo pain go away completely?

Dec 29, 2015 10:44 PM

I agree that people's pity looks suck! I've never done Biofeedback, but it was suggested by Mayo Clinic in FL; we don't have it in my area. And I've not tried yoga, although I purchased a "chair yoga" DVD...I keep forgetting I have it! Lol

I can honestly say (knock on wood!) that after they removed the 10 cm paraovarian cyst, which possibly grew from ovarian cells left behind after the total oophorectomy, I have not had any known email pain. However, I've now been dx with pelvic congestion syndrome (engorged pelvic veins) & pelvic floor dysfunction, along with residual pain on the right abdomen following surgery & post op Ileus. I'm not sure if I could tell the difference now. I've been cut for female related surgeries 6x and adhesions & endometreosis were present each time, even after the oophorectomy & hysterectomy. I can't advise you what to do, as my fibro developed during the two years preceding the mass being found, but wasn't dx until 2 more years passed. Good luck & God bless you with your decision & outcome! πŸ™‚πŸŒΌπŸ™πŸ˜·

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