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CatchMyPain Community and Pain Diary App to manage chronic illness

New here, hoping to not be alone in this test...

Feb 12, 2016 4:39 AM

Hi there, I'm Jess, I'm 24 and have had gradually worsening pain for years. Doctors originally diagnosed fibromyalgia (and we all know how they view that as 'in your head') started getting bad flare ups in joints instead of muscles, then got diagnosed with hypermobility but the last 6 weeks have been agony so got upped pain medication, bloods show low ANA test and as mother has Lupus as well as hypermobility, got called back to rheumatologist 6 moths early (guessing because they got same blood results as doctors) so am now keeping a pain diary as doctor would rather me be on MST than DHC continus...
Thanks for letting me vent, I'm a little worried in case it is other things as a few worse conditions have been brought up but I'm not ready to talk about them yet just in case....
Thank you x

Feb 12, 2016 5:07 AM

I'm sorry your pain has gotten worse over the years! I know first hand that's a scary feeling. Keeping a pain diary can be very helpful to your doctors so that's great that you are doing it! Feel free to vent and talk about what's going on with you on here :) we all deal with so many different things but pain is universal. You are not alone in this fight!

Feb 12, 2016 6:13 AM

Hiya I'm Katie. My world has been turned upside down with debilitating pain, my mobility is dysfunctional. Docs just throw drugs at us, they don't seem to recognise that there is a real person behind the real pain. It's definately not made up in our heads, its very real. I think they mean that the signals are in overdrive telling our brain that there's a problem, just needs someone to say it like that. Sending hugs and best wishes Xx

Feb 12, 2016 6:23 AM

Thank you guys :) I really appreciate the support! Trying to start eating healthier and trying to get a swimming pass ect. To try and keep my mobility up but it's difficult, this app already feels like a godsend, I'm about to try update now painkiller have kicked In, meant to be going for coffee with best friend in a bit so trying to get myself up and ready but it's difficult! Thank you for your kind words Megan :)
And Low mobility is the hardest part isn't it Katie! Especially when it fluctuates, one day I can do anything and the next I'm layed up in bed :/ I think I'm lucky that my doctor knew me from 6 years ago when I had serious mental health problems so he's seen me come out the other side and between him and the head of surgery, they are talking to rheumatologist sand investigating as well as painkillers so I feel lucky to be so supportive a so know other people aren't s lucky with GPs! Even though the fibro has mostly been dissmissed now (or at least put down to the hypermobility and possible lupus!), it's definitely not in people's heads and I will always stick u for anyone with such an awful condition! It may be down to faulty pain receptors but I also think different parts of the country favouritism deffernt conditions unde the chronic fatigue umbrella (in Wales, they said I had arthritis in hands and M.E but down near London they called in fibromyalgia) Thanks you, I hope you both have some respite from the pain! Sending gentle hugs! X

Feb 12, 2016 6:27 AM

Hi Jess, I'm so sorry for your pain. I'm glad that you have found our community family and would like to welcome you. Know this is a very safe forum to come to and get support, find answers, get advice, find compassionate and empathetic people. There are no judgements here. We are all here with many varied diagnosis but all share daily, horrendous pain. It's an unfortunate thing to share but is also comforting to know that you're not alone. I have been in pain for almost 23 years now and have had 29 surgeries. I've been diagnosed with Fibro, degenerative joint/disc disease, RSD/CRPS, long thoracic nerve palsy, cervical spondalytic myelopathy, scoliosis, spondylosis, sciatica, SI Joint disfunction with fractures, TMJ with narrowing of the ear canal and hearing loss, migraines, depression, anxietyand a laundry list of other things that I can't think of at the moment. (I'm sure you get the picture). Anyway, I hope that you settle in, find the answers to your pain and get the proper diagnosis for your situation so that you can be properly treated. I wish you all the very best of luck with your journey and look forward to getting to know you. Welcome to the family. {{{Hugs}}} 💕🙏🏻🌻

Feb 12, 2016 4:43 PM

Along with Alwayz, I would like to welcome you to the pain family. It is a wonderful group of people. It is a place to rant when no one at home or are friends don't understand us. Many times people who don't feel chronic pain have no idea how to support us or say the right things. Actually, they may say some very stupid and hurtful things without really knowing it or thinking they are helping you. Those are the times to turn to us. Because we will give you support on how to deal with those things. Katie, we are so happy to have you hear with us because we want to display and give you the empathy and support you need when you need it. And we can learn things from you based on your experiences to. I look forward to your post. Don't hesitate to start a post.

Feb 12, 2016 6:45 PM

I'm also 24 and have fibro and a connective tissue disorder (don't know which yet)

Feb 12, 2016 10:26 PM

You're so you to be going through what you are. I am sorry.

Feb 13, 2016 8:51 AM

Welcome to our family Jess! I hope you get answers soon. Hugs & love & prayers! 🙂💕🙏🌼

Feb 13, 2016 2:26 PM

Hi Jess.
I'm new here too. Which part of UK are you in? I'm in Devon. I'm sorry to hear you're struggling so much. Pain is hard at any age but always worse the younger you are. I've had pain for 10 years and am 37. I know a little about fibro. Have you been seen by a Pain Clinic? They are very good in managing fibro - especially if you can find a fibro specialist near where you live. We have a few down here. Speak to your GP and see if you can get referred in. I work for the NHS and am a pain patient 'frequent flyer' so know that CFS and fibro are different conditions although the symptoms do overlap.
I hope by now your meds have kicked in & you're feeling a little better. It's hard living from one dose to another.

Take care,
Bex

Feb 13, 2016 6:01 PM

Hi and welcome to the family. As you have already heard we are a really good group, if I may say so myself! If there is anything we can do to help let us know.

Feb 13, 2016 7:22 PM

Hi Jessy! I'm Heather and I'm fairly new here as well. I have fibro and ankylosing spondylitis which is arthritis and severe inflammation in my lower spine and large joints and also fatigue like the fibro. My back and knees hurt the most and I just have overall pain throughout my body. I also have severe fatigue and can't work right now. I am an elementary school teacher and am not well enough to teach right now. Welcome and good luck with your tests.

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