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Jul 19, 2016 4:57 AM

I've been at a solid 7-9 pain level for two weeks. I had an appointment with my doctor this morning, hoping I could get something for pain relief.

didn't happen.

was told nothing can be done until genetic testing over with, which is two months from now. It's almost like they want to make sure I'm not faking my pain. heh.


Jul 19, 2016 9:22 AM

Hello Lynx ⚘
Omg i was technically stalking my pain consultant, because i had osteo/acupuncture in the same building! I cant get past his secretary atm... cant get in a room with him till september...so i had to go to my GP... and bless her... all she could do is give me another opioid till i can see him... lol anyway i saw him in the corridoor and turned away in floods of quiet tears... i came to my senses and bolted dwn the corridoor b4 he saw me.... i feel so ugly right now... but pain changes me when im at my limit! Sorry ur going thru the mill too... we need to accept todsy was emotional... and hope to fcuk tomorrow is bit better. Ive cried so hard my eyes feel like mush lol... sorry i dont know where that all came from hunni 🐫...forgive my hyjacking of ur thread πŸ’‹

Jul 19, 2016 9:24 AM

What genetic tests do u have to have? 🌷

Jul 19, 2016 3:55 PM

Lynxbun, I'm so sorry you are in so much pain. It's very possible that pain meds could affect the results of the generic tests. Try not to let yourself get stressed because that will likely increase your pain. I know that's easier said than done, especially when in pain. Practice deep breathing & relaxation, and gentle stretches to keep muscles from being tense. Take otc pain meds and use pain ointments. I know it's not like rx m meds, but because of my pain med allergies, these same suggestions are treatment methods I use daily. I do have tramadol for breakthrough pain and flares but it's not that great. Due to my med allergies I've learned to deal with a lot of pain. But when it affects my sleep it's really hard. Sending you hugs& prayers the time will pass quickly and your pain will lessen until then! πŸ™‚πŸ’•πŸ™πŸŒΈ

Jul 19, 2016 4:54 PM


Genetic testing for Ehlers-Danlos Syndrome.

Jul 31, 2016 2:43 PM

Lynxbun, I'm sorry for your pain. I hope that the time goes by quickly for you and that your pain levels don't remain where they are until your tests are done. I hated waiting as well and not knowing but still suffering and being told they can't find anything and that I was "a mystery". Well now 23 years later, over time I've got a laundry list as long as my arm of confirmed diagnosis with several autoimmune issues. You'll be in my prayers.
Lulabel, I am so sorry that happened to you. It sucks that you felt you had to not let him see you and that you're emotions overtook you at that time. We all hit the wall from time to time and can't cope on some days. We are only human after all. I am sending you gentle {{{Hugs}}} and lots of love from across the pond. If you want, I'll start swimming and when I get there, I'll get you in to see him!!! (Then again your appointment would probably arrive before I would... LOL!!!) hang in there Sweetie. We're on this journey together. πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

Jul 31, 2016 4:21 PM

That is so annoying!*huggggggggggs!"

Jul 31, 2016 8:44 PM

Please breathe deeply & know we are all here for you. You have given so much to the group I the short time since you found the app! You are not ugly, the disease may be, but not you. We will be praying for you to find a bit of reliefπŸ’–

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