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One step forward 12 steps back

Oct 20, 2015 11:46 AM

I have to say that this community is truly a blessing. Yesterday someone checked in on me due to a thread i started. Through talking with several people, i went from being severely depressed to feeling much better. This morning I'm back to feeling depressed. The only times in my life when I just wanted to give up and die, have been due to this pain and doctors screwing around with me. I've been trying for 22 damn years and I feel like I'm still at square 1. Its so discouraging, I am going to call either the SS administration or Medicare today and look into getting an advocate. I cannot keep doing this. Trying to be more assertive it's not easy for me but I'm giving it my all. It often gets met with eye rolls or rude comments from doctors. I'm always questioning my own sanity or do I just come off as a dick head or something? I just want to cry but I don't want to traumatize my 3 year old. She doesn't understand any of this. I feel trapped like a rat in a cage. Feeling like I need to be scraped off the shoe sole of life. Overwhelmed. 😭

Oct 20, 2015 11:52 AM

Boo. I don't like to hear this for you anonymous! You just have to keep fighting and definitely take lots of breaks for rest and self care! Thinking of you

Oct 20, 2015 12:06 PM

I am there too. Just a couple of days ago, I quit. Went to bed and just gave up. No phone no people nothing. I know it would be hard to do with a three year old. Well after I gave myself permission to give up, whin, complain, get angery, feel guilty for doing all this, cryed, I prayed for the creator to remove these diseases from this body. All day, every time I was reminded of pain, my life with pain, not being able to have a say in my life. I prayed. The diseases didn't leave of course but I got some room from the constant Ness of it all. Much love and light

Oct 20, 2015 12:07 PM

Anonymous, I understand what you're going through. I also have been going through pain for 22 years and have been at the end of my rope. Thank God for this forum because all of my peeps keep on handing me more rope... LOL!! I am certainly not making light of your situation, I'm saying, share my rope, hang in there. I'm here with you and will be for as long as you need me. I am sending you {{{Hugs}}} and prayers for support and hope you have a better dayπŸŒ»πŸ™πŸ»

Oct 20, 2015 12:13 PM

Thank you all very much. Somehow someway I will get there.

Oct 20, 2015 2:47 PM

Although I've suffered mild fibromyalgia for over 15 years. This has been my first chronic episode. After reading your post, I feel my inadequacy in dealing with my pain and fatigue.
Why does this haft to be such a mystery decease that doctors, family and friends look at you as though your just a lazy hypercontracts ???
Please if any of you have any diets, home remedies or this med works this one doesn't, I would greatly appreciate.
🌹 simplyamelia

Oct 20, 2015 3:46 PM

Hi SimplyAmelia, I think that if someone doesn't have the issues we have, they don't have the ability to understand what we're going through. My oldest daughter is starting to show signs of some chronic illnesses and that scares me. Yet she still thinks of me as mom and it's all my job no matter how crappy I feel. That's why this forum/family is so great. We all get it because we live it too in one way or another.

Oct 21, 2015 2:22 PM

Anonymous, It seems we all take steps backwards from time to time. And it's hard not to feel down. An advocate might be just what you need. Just know we love you and we're all here for each other. Hugs & a prayer for you! πŸ™πŸŒΌ

Oct 21, 2015 3:21 PM

Thank you FlappysLady πŸ’œπŸ˜€

Oct 21, 2015 9:07 PM

Adding hugs and healing anonymous. I'm sorry you were feeling shoe scrapeyπŸ˜”. I just met you and you already helped me, even when you were feeling so awful. I hope you get a break and some relief, and that tonight is better.

Oct 21, 2015 9:09 PM

I don't want to end on a sad face iconπŸ™πŸ˜ΊπŸŒΉπŸ‘ŒβœŒπŸΌοΈπŸ’•.

Oct 26, 2015 11:28 PM

Thank you marsemouse, I think I'm in withdrawals from the pain meds so I'm a bit sick but my mental status is much better than it was the day I posted this. Felt darn good to vent! πŸ˜ΈβœŒοΈπŸ’œπŸ˜œ

Oct 27, 2015 1:54 PM

Love your title ... can relate to the 12 steps back too!

And yes, my only kid (13 yr old daughter) expects her dad to NOT be known as the pot head dad. I'm not. Always had the opportunity since I know a few family members who have been pot smokers, but taking a CBD pill or vaping

Oct 27, 2015 1:56 PM

is not at all the same. But the societal stigma lumps me in with the pot heads.


How do we get 12 steps forward and 1 step back?


Oct 27, 2015 4:55 PM

Well I've known my share of pot heads and I much prefer them to the meth heads! 😜

Oct 28, 2015 10:59 AM

Rkolle01, 12 steps forward and 1 step back reminded me of when my hubby and I remodeled our kitchen. Demolished to the sheetrock, painted, required and moved the oven/strive & plumbing/electricity for the refrigerator. Then we laid tile, a2 day process, and grouted. The next morning I entered the kitchen before he did, and yelled, "Oh my gosh, what in the world happened with the grout!" 😡 I was looking at a zigzag line across the center of the room (lightening bolt), with one half a dark gray and the other half light silver. As tired and frustrated as we were we had to hand chisel 1/2 the grout up and replace it with one color. 😭 My hubby figured out the sales clerk picked up two different bags. 😬 We laugh about it now. But yeah, that's 12 forward, 1 back! Wishing everyone a blessed day! πŸ™πŸŒΌ

Oct 28, 2015 11:05 AM

That's too funny, Flappsy!! I can only imagine your expression when you walked in and saw that... LOL!!! I love the idea of 12 steps forward and 1 step back. I've had some of those but for the most part, it's an even one step forward and one step back again. I guess I'm lucky or I'm just so used to dealing with this that it takes longer to overwhelm me. I hope everyone is having a blessed and peaceful day. πŸŒ»πŸ™πŸ»

Oct 28, 2015 11:24 AM

I understand your struggle. I too fought for over 20 years with the medical system. Don't give up, ever! Day before yesterday, I finally got a "formal" diagnosis of multiple sclerosis. I fought relapses on my own, no help from the Drs or insurance. I knew what it was, they knew what it was, but wouldn't or couldn't do a formal diagnosis because I don't have plaque in my brain. It was in my spine and they didn't look there during that time. Now they do. Please don't give up. Ever. I didn't and I finally won! I will get my treatment now.

Oct 28, 2015 11:34 AM

Cearea I am very happy for you! Not that you have MS of course but that you've finally gotten the answers and the help you needed so badly! I have just been doing a lot of online research. Not to try and self diagnose, but to suggest issues we could possibly explore. Blessings to you βœŒοΈπŸ’œ

Oct 28, 2015 11:41 AM

Keep researching. I am now an expert on research. Without us doing the research and taking it to the Drs, they don't know the newest things. My Dr said without my continued persistence and research they never could have diagnosed me. She actually thanked ME for my hard work in helping her do her job better. What may I ask is your illness? I either didn't see what it was or I had a brain fart. Sorry but that is what happens. My brain just goes thtttt.

Oct 28, 2015 12:07 PM

Thank you Cearea, well what diagnoses I have officially been given degenerative disc disease, scoliosis, bulging discs L2-3 & L4-5, osteo arthritis of the spine, edema, farominal narrowing causing nerve pain down my legs and feet. I also have been diagnosed with PTSD and major depressive disorder. I was told by 2 doctors that did that thing where they apply pressure to the trigger points? That I have fibromyalgia, however I have seen 2 more docs since then that do not believe in Fibro. I have pain everywhere and this is what I want answers to. I was sent to UC Davis in 07 to see an orthopedic Doctor to determine if it could be possible that my scoliosis was causing the widespread pain. I probably could have answered that question for my doctor, rather than riding for 6 hours to be told that no, it was not possible. I have been journaling everything where my pain is and what it feels like. I also have terrible brain problems, sometimes I feel like maybe I have early onset Alzheimer's. Anyhow I'm looking forward to my doctors appointment tomorrow. He will have the results of my first scoliosis screening since 07. I think I'm going to pass on pain meds. As much as Norco helps me with very little negative side effects. I am going through withdrawals from Norco for the first time ever. What a nightmare on top of everything else. If doctors do not feel they have a moral obligation to protect their patients and not just ignore their requests for a refill on their meds then I don't want to be on them. It's a bitter pill of sorts to swallow though. As I age and my pain is getting worse, my depression is getting worse. Both are affecting my self care and the care of my 3 year old. There are days where I can barely stand up let alone lift her into the bathtub and bathe her. I get help from my older daughter when she is available. I appreciate that. On an average night I'm getting 2-3 hours of sleep total. So when my daughter can help, I get a quick nap and she takes good care of her little sister.

Oct 29, 2015 10:52 PM

AlwayZ it was hilarious, or at least afterwards! πŸ˜‰

Cearea, it's good that you finally will get treatment. It's awful how many know what they have but it takes years for an official diagnosis & treatment, due to medical protocol. I was sent to Mayo because my neurologist thought I had MS. Mayo said no. But on the way home my hubby asked, "what if they're wrong? They didn't even look at your brain, the old brain scan, or your spine. What if they are wrong?" I tried to reassure him, if they're wrong time will show it, but in the meantime we will focus on my dizziness, imbalance, tremors, & memory loss individuality. It really upset me that my hubby is still scared deep down, and I'm trying to ignore "what if." Anyway, I hope your treatment goes well and you are able to get whatever you need to help.

Anonymous, I hope your doc appt went well, and that this step is the first to many helpful things (diagnoses & treatments). If you have fibro fog, and/or stress overload, you're going to have memory issues. Add insomnia on top of that and your brain will be like mush some days.

You're both in my prayers! (((Hugs))) & wishes for a good weekend... πŸ™πŸŒΌ

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