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CatchMyPain Community and Pain Diary App to manage chronic illness

New to the site :)

May 29, 2016 4:08 AM

So this is me well the shell that contains what used to be me....
I'm 37 and was diagnosed with Fibromyalgia Oct 2014 and Dengentive disc disease in two places last month...I had problems before my diagnosis which resulted in a hysterectomy Nov 2012 at the grand old age of 33, it was soo bad I collapsed in my car whilst driving as a cyst on my ovary had burst, apparently I managed to park the car before falling out the door (not that I remember this)
When I got my diagnosis for the Fibromyalgia I had been training with a personal trainer 4x a week doing walks of about 7 miles at a time had lost alot of weight and finally working in my dream job and Fibromyalgia has destroyed all of that I'm now 7st heavier as exercise makes it worse or should I say the exercise I like (kickboxing and fast walking) I had to give up my job as I worked with elderly clients and I was proved to be a safeguarding issue because my hip kept giving way.... My partner doesn't come near me anymore because he's scared he will hurt me :( my 14yr son is Autistic with ADHD and can be quite a handful, none of the medications have helped this far and right now I've had enough .... People keep telling me there's light at the end of the tunnel but after all this time I'm really struggling to see it :(

Any advice , coping strategies etc would be hugely appreciated before I go stir crazy !!!! Thanks for listening to my rant :p

May 29, 2016 9:03 AM

Hi there, so sorry to hear about your pain; I also had to stop working & have had emotional, physical, & financial consequences.

I'm also new to this site and am finding myself spending hours per entry trying to delineate multiple pain regions & correlating descriptions. I hope I can get a better handle on this app!

The main point I would like to bring up is that what you have written sounds very familiar to me. At the age of 48 I was diagnosed with Ehlers-Danlos Syndrome (Classic/Hypermobile "mix"). I figured it out on my own & then received confirmation from a Doctor that specializes in Connective Tissue Disorders. I had been previously diagnosed with Fibromyalgia, which is very common for EDS patients. I urge you to check into this!

May 29, 2016 9:26 AM

Thanks will look into that !! :D

May 29, 2016 9:30 PM

Welcome to our community family CrazyRed! Your story has familiar tones with me as well. I've learned to listen to the clues my body send out, in order to live as pain free or at least coping as best I can. Having the DDD since the 90's, then fibro & sjogrens, along with multiple other chronic pain issues, I simply take every day one at a time, one hour at a time, one step at a time. If my body says rest then I rest. And if my body says get out and enjoy something i do that too, just not for long periods of time. I've tried vitamins & herbs, along with diet changes (less sugar & processed foods), and walking/stretching exercises, in order to keep as healthy as I can. Vitamin D3, potassium, & magnesium have had a good effect I think, less cramps. I also started playing mind challenging games to try and slow down my dementia/memory loss; Sudoku, Scrabble, puzzles, etc. It takes time to figure out our best coping method, as each of us are different and nothing works the same for everyone. Allow yourself to grieve the lifestyle you've lost, then you can begin to work on enjoying as much of your new life as possible. Sending you hugs & prayers as you find yours! 🙂💕🙏🌼

May 30, 2016 3:08 AM

Thank you @FlappysLady81 lots of information there I can look at :)

May 30, 2016 1:10 PM

Welcome to our family community. I am very sorry to hear about the pain and difficulty you have coping. It's not an easy life as you already know. Things get very hard sometimes. I have RSD/CRPS, Degenerative joint disease, degenerative disc disease, Costochondritis, TMJ, cervical spondalytic myelopathy, thoracic degeneration, severe lordosis, two knees that need replacing, no left shoulder joint, long thoracic nerve palsy and several other things I can't think of at the moment. There are days where functioning is just not on the menu. You have to listen to your body and just know what you can and can't do that day. There really IS a light at the end of the tunnel. You just have to focus. There are days when things are a bit better and I do what I feel will make me happy even if it's painful (I mean, it's gonna hurt whether I do it or not), and then take breaks and do what I can. If we try hard, we can sure find blessings around us even on the "bad" days. Distraction, focus, mindfulness, biofeedback all help with this. Sometimes I hit the wall and can't take any more, I have my pity party, cry and after that release, I get back into life mode. I hope that this is helpful in some way and that you find support and comfort in knowing that you have many people here that will reach out our hands to pull you through. I wish you all the best and send positive vibes, gentle {{{Hugs}}} and prayers your way. 💕🙏🏻🌻

Jun 01, 2016 4:39 AM

Thank you Alwayzinpain ... I had a really bad day yesterday and told my partner to leave etc ... Lucky for me he's a stubborn old fart and loves me to pieces or I'd of now been alone coping with this.
I admit I am struggling to see light at the end of the tunnel but I'm trying :D

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