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CatchMyPain Community and Pain Diary App to manage chronic illness

hallo there :-)

May 01, 2016 5:05 AM

Time to introduce myself I guess...
Found this app and community very interesting and helpful. It helps a lot knowing you're not alone and have a place where ppl simply understand what you're going through...
My problems started about a year ago, I think... Hard to say really cause I'm also an alcoholic in recovery and before I simply drink through my pain and problems... Now, when I'm sober I just see and feel more. Really not easy to stay sober when you hurts so much every day and you still remember this magical "switch off" medicine from before... but that's not the point here ;-)
Me and my doctor are still trying to find out what's the problem... my blood test results are good, MRI and EMG are good enough... my neurologist just say it's chronic pain but she don't know why... both my doctor and neurologist suspect fibro... next step is spinal fluid test to check for neuroborelliosis. We will see...
I had 1,5 day almost without pain yesterday! First time in a long time! Guessing my body wanted to gave me a birthday gift ;-) and now it starts again... ehh...
Anyway I wish everyone a good day and "mini pain" as we joke with my "fibrofriend" ;-)
Greetings from Norway!

May 01, 2016 12:00 PM

Norskjenta84, I am sorry that you are in such pain. I commend you on being able to abstain from alcohol when you are hurting so badly, it shows that you are strong and determined. (I know it is a very difficult road to sobriety and that it's a fight every day to not backslide. I hope that they are able to find what is wrong and put a plan in motion to get you feeling better. Don't be quick to accept a diagnosis of fibro. Sometimes the doctors will give you that diagnosis when they can't find anything else and don't know what other tests to run or where to send you for more tests to get a true diagnosis for what is causing your pain. Always remember that you are not alone. We are a very close knit group who look out for one another and we pray for one another, give a hand to hold, an ear to listen, a shoulder to cry on and jokes to make us all laugh. There is always someone here to come to your aid when you need it. There are no Judgements here and you'll never hear anyone ever say that you shouldn't whine or feel the way you do. I wish you all the very best and I'm sending you gentle and reassuring {{{Hugs}}} and prayers for quick results and getting you on the road to feeling better. 💕🙏🏻🌻😊

May 01, 2016 4:11 PM

Thank you so much for all the heartwarming words! Amazing how ppl who share the same hard time can be so full of empathy and care so much for others! Experience this and learn in AA. Gives you a lot of hope that your life can be good even if it's not perfect and you struggle so much...
I'm lucky to have a doctor who is motivated to find the answers. He don't want to give fibro diagnosis without checking all possible causes. Too bad it's taking so much time...
Well, it's 11pm here in Norway so it's time to try to get some sleep.. tomorrow I'm going to the diet specialist to help me change some food routines. Trying all I can...
Sending all my warm thoughts 😍♥

May 01, 2016 7:26 PM

Hello Norskjenta84, I want to say hello and wish you good luck with your dietician. I understand that food can play a major part in chronic pain. I am eating tons of vegetables & drinking much water. Cannot give up my coffee, though.

May 01, 2016 11:38 PM

Yes, welcome! Do let us know about going to the dietician and how you are feeling. Best wishes and gentle hugs.

May 02, 2016 7:13 AM

Welcome to our pain community family Norskjenta84! Congratulations on your sobriety! Coming from a family with alcoholism, I understand the daily struggle. But you are strong and we are all here for you.

Like AlwayZ said, don't let your docs just tag you with fibro. Even if they do diagnose (dx) it at first, you could still have other underlying cause(s). My PCP began suspecting fibro in 2007-2008, but didn't dx it until 2012. I continued complaining that something more was wrong because I was getting worse on meds, not better. In 2015 I was dx with Sjogrens & hypothyroidism. And in April a GYN doc said I have adrenal fatigue, bordering adrenal insufficiency or crisis. I'm seeing my endocrinologist this week who plans to run more blood labs. I'm staying so exhausted with any activity. I've suffered chronic pain for decades in my spine, but these issues were completely foreign to me. I have a list of dx so long the doctors are like, "It won't all fit on one page!" Lol

I've learned so much from others in the community, some which changed or added to my dx of chronic conditions. I'm going to share some links that were shared with me. I opted you find them helpful. Hugs & prayers as you go through the process of finding the cause of your pain, and learning ways to cope (medicinal, natural, exercise, relaxation, etc). 🙂💕🙏🌼

May 31, 2016 4:57 PM

Update

It's been a while since I've been here... It was a bit of the battle with neurologist lately... As I said before I was supposed to have a lumbar puncture to test me for neuroboreliosis. Unfortunately doctors in my hospital have a different opinion about this. They said that since my blood is clear there is no reason to do this test. Yeah right... As my doctor (from Germany - looks like they have a different schools there) said, it's impossible to find neuroboreliosis in blood test. So he had to find another hospital what will do this test. Worse thing was that this neurologist said to me that all the pain I have is just in my head! That I should go to the psychologist instead of him!!! What I btw did before but still... But I'm guessing I'm not the first and the last to be called crazy...
So yesterday I finally get to do this lumbar puncture. The test went well. Didnt felt anything even if they didn't give me anything for the pain. Really good doctor! Pain came in the evening... So since yesterday I'm mostly in bed. It's getting worse when I get up...
And I'm very curious about one thing. I'm sure most of you had lumbar puncture. How is it done in your countries? Here in Norway it takes around 30 minutes and then they just send you home, tell you to rest a lot, drink a lot of water and coffee and don't lift heavy thing for few days. Than in Poland (I'm originally from Poland) they keep you in the hospital for at least 24h without any possibility to get up from bed. Huge different!!!
Anyway after an hour I get first results of the test. They confirmed that I don't have neuroboreliosis (thank God!). The rest of the results will be next week... Feel like I hit the wall again! Ofc I'm happy I don't have neuroboreliosis but that also means that I still don't know why I hurt so much!!! Exhausting... Starting to think that maybe this neurologist is right, maybe I'm just overreacting...
Manage to change my diet a bit. Mostly give up sugar and starting to eat regularly. Feel a bit more energy during the day, don't feel any different when it comes to pain... We will see...
It's almost 12pm here in Norway so I'm gonna try to get some sleep.
Sending all my love and warm thoughts to all of you <3

May 31, 2016 6:15 PM

I'm sorry to hear of the various negative reactions by the doctors. But I think we've all been suspected as it "being all in the head" at some time or another, and sometimes multiple times. Lol I'm glad to hear you don't have that neuroboreliosis. Hopefully you can get answers soon.

I have had myelograms and a lumbar puncture (USA - GA), and all were quite painful to me, but then I hate needles, especially in the back. The first few times i was a 24 hour stay patient but the rest, including the OP, was sent home. I was told to drink lots of water, no caffeine, and stay off my feet as much as possible in a slightly elevated/reclined (not flat) position. I was also told if I began to get a headache or back pain that wouldn't go away i was to call the doc or go to the ER immediately, as I might need a blood patch if spinal fluid was leaking out inside my body. Luckily I didn't have any problems other than a little extra soreness at the address of the LP. I used ice packs on & off for the swelling that was causing the pain.

Just keep charting every symptom and try to be patient. For many of us it's taken months to years to get the diagnosis(es) we needed. Have you ever been told you have degenerating discs in your spine or major body joints, or arthritis? I have DDD/TMJD/osteoarthritis in my spine, knees, finger joints, and now my hips. Even without the fibromyalgia it can be overwhelming pain at times. Just try and listen to your body, pacing your activity & rest periods as needed. Hugs & prayers you will spin know what you are fighting& find ways to cope and get relief from pain! 🙂💕🙏🌼

May 31, 2016 9:50 PM

This is a wonderful community filled with compassionate people 💗

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