Anyone with undiagnosed chronic pain?
Hello, Ive been suffering from progressively worsening neuropathic pain in my legs, back and arm for the past 2 years. A few weeks ago, after struggling to find help for it I finally managed to get an MRI scan. Yesterday the results came back revealing that there was nothing wrong with me at all. The pain clinic I had been in a long waiting list to access have told me I will now have to wait 2 weeks to find out where I will be referred to next, and then Im worried I will have another indefinite wait ahead of me. This worries me a lot as I am due to sit my A level exams in a couple of months and I am really struggling to go into school every day and do day to day activities.
I have been given the advice to not dwell on the pain and use schoolwork etc. to distract myself from it but the pain is so intense that it is hard to concentrate on anything and sometimes it stops me from getting out of bed in the morning. Does anyone have any experience with stuff like this? Or does anyone know any coping strategies? If anyone is struggling with similar issues and is feeling a bit stuck too maybe we could try and support each other?
I hope this thread is relevant and does not come across as being too whiny (sorry if that is the case). Its the first time Ive made a thread on here.
@lintilla hi lintilla,
You're not whiney at all and even if thetdt okay. We sometimes need to vent and that's normal and perfectly fine.
I understand you're worries about having to wait and all the uncertainty about it. It's really stressful on so many levels.
Focusing on things while you experience pain is really hard to impossible. That's normal.
How do you experience pain? Is it the same all the time of or does it have peaks where it gets unbearable and periods where it's less intense?
I have an undiagnosed chronic illness and so far all my tests have come back clear, too, so I know kind of what you're going through :( I'm not super familiar with the NIH(?) system (because my country doesn't have public healthcare) but from my experience, you will probably have to be your own fierce advocate to get care and do a lot of research on your own. Do you have anyone who can "vouch" for your pain? Especially, if you are a lady-type, a man-type person? It shouldn't make a difference, but it does :( When I call the doctor, I get the run-around. At appointments, they discount my symptoms. When my man-type man calls and insists they call him "Dr." (cos he has a PhD but not the kind that helps people ;P) their tone changes and suddenly I get appointments with specialists that were denied to me before. It's messed up :( :( :( But at some point you gotta do what you gotta do to get better. I also recommend Maya Dusenbery's book Doing Harm. There is a section in it about chronic pain and in general lots of tips about how to deal with unhelpful doctors and medical systems. I just read it a couple weeks ago and wish I had read it long ago. It's also very validating to read others' "doctor stories" - it's not just you. Or me. Lots of people are brushed off by doctors who just can't be bothered to look into something they didn't see on a quiz in med school.
Is there any way you can insist on going to the pain specialist despite the clear MRI?
