Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Am I the only one?

Mar 23, 2017 3:26 PM

I've been in pain for about 10 years now and I still have no diagnosis. Also, know one seems to understand my pain and it appears contrary to common sense. So, I'm starting to wonder if I'm the only one out there experiencing this.

Basically, if I'm stationary, I'm in increasing amounts of pain. Always beginning in my low/mid back. The longer I sit or stand still, the more my back cramps up and it begins to spread down my hips/legs and up my spine/shoulders. I've had no major accidents, no acute trauma, just turned out to be another new kinda fun to go along with puberty. The only thing that really helps is massage and movement, though the pain is never all the way gone.

Am I really the only person out there experiencing this? Could it really all be in my head?

Mar 23, 2017 4:35 PM

My gp admits medical science doesn't have all the answers, knee pain in physiologically sound joints for 5 years- thought it was in my head to, its not!

As a result my life is a massive distraction therapy, do more of what you love. If you're uk maybe look into pain management which was a brilliant help but does have its limits.

Mar 23, 2017 5:12 PM

That's nice that your gp admits that. I'm in research, so I understand that we don't know everything, otherwise I would be out of a job, haha. Just gets disheartening when they keep saying the tests are normal so you must need a phycologist. Luckily I love my job and and it keeps me on my feet and my husband has been great. Just in a pain-depression slump...

Unfortunately I'm in the U.S., so insurance currently covers some massage. Maybe they have something like that here though! Thanks for the thought. :)

Mar 23, 2017 9:55 PM

I have similar pain that's new. My pain doc said it was spondylosthesis and gave me an injection that helped some. He also recommended 15 min on an exercise bike a few times a day. Something about stretching the legs out helps. I'm sorry you are dealing with pain.

Mar 24, 2017 10:54 PM

Ive had undiagnosed back pain radiating from the lower back for 6 years. No accident or injury either. I've done all the tests and therapies nothing helped. I just went to a woman who does myopulse and acuscppe and that seemed to help me drastically. I've gone from a 7 to some days sitting at a 1. Definitely would recommend if you can find one

Mar 25, 2017 2:05 PM

Thanks Klump! It's surprisingly nice to hear I'm not alone with this. I'll try look into that and see if it helps. :)

Mar 25, 2017 3:51 PM

I was diagnosed with lupus after​ a 2.5 year battle of trying to get answers for my severe joint pain. Now they're telling me it's not lupus after a year but mixed connective tissue disease. In other words I have symptoms from a number of different autoimmune diseases. I'm still on the same treatment.
I have the kind of back hip pain you have too. I have osteoarthritis in my lower back and hips. The longer I stand the more pain I'm in. Have you had x-rays to look for arthritis? Have you had testing for autoimmune disease? Don't give up looking for answers if you know something is wrong. I've been to many Docs and specialists. All the best.

Mar 25, 2017 5:27 PM

I was origianlly diagnoses as early onset artists, but after a full back MRI, that turned out to be wrong. Which explained why the anti-inflammatory treatment/meds never worked. I was also tested for a small panel of autoimmunes with no hits. Also did auccupunture, massage and chiropractor. Massage has been the best temp relief so far. Got a neurology specialist up next on the list, so hoping they have a diagnosis.
Thanks for the suggestions and hope you find some relief too.

Mar 25, 2017 6:27 PM

Having friends that also struggle with chronic pain can do wonders in terms of coping. I'm sorry about your pain. Living through with an undiagnosed pain is haunting. :( will be praying you find a resolution of some sort.

Mar 25, 2017 7:46 PM

Oops above. Tests for autoimmune disease can be negative and you can st

Mar 25, 2017 7:48 PM

Oops again darnit lol
Still have it. Blood tests,are not definitive. I'm only ANA positive my other blood work is negative but I have autoimmune disease.

Mar 25, 2017 7:53 PM

I've heard that too. Think my primary is reluctant to test for other things. Like she is more scared a of shitty diagnosis then no diagnosis and rather pass me around the specialists first. If nothing comes out of this Neuro consult, maybe I'll try me more pushy.

Ready to start relieving your pain?

Join Community