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Pain and rare conditions

Mar 13, 2018 2:23 AM

I have a rare syndrome, with this comes chronic pain.
Anyone else know what it’s like to have a condition that nobody knows much about so you are their “complex case” on their books?

Mar 13, 2018 3:27 AM

Pretty much all of the thousands of us suffering from chronic pain have no answers on cause or prevention. Fibromyalgia, chronic fatigue syndrome, hypothyroidism, arthritis, Lyme, polymyalgia, lupus to name a few.
Doctors dont seem interested in finding and treating the cause.
We are all put on pharmaceuticals that dont cure, often harm and become less effective over time.

I spend many hours reading and researching, hoping to find understanding and a cure.

Hopefully you will find this site supportive.

Mar 13, 2018 10:04 AM

Yes. I do know what it's like. I'm 19 and have 3 spine problems in addition to many other health problems. One of my spine problems is Tethered Spinal Cord, which I was born with. Even though it has existed since 1859 there are a lot of doctors who don't know what it is and don't know how it affects a person's life.

In addition to Tethered Spinal Cord, I also have an undiagnosed chronic pain condition. The only explanation doctors can give me is that either I have a difficult to diagnose condition or I have a condition that has not been seen before.

It's super frustrating to not have answers or a treatment.

Mar 13, 2018 10:20 AM

I'm so sorry AmbrielleLyn. That must be very hard to deal with.

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