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Fighting for a diagnosis

Mar 23, 2019 11:38 AM

I've been to and from doctors for years trying to get them to acknowledge my constant fatigue, pain and lack of motivation.
My ankles in the morning feel crushed and I can barely stand some mornings. Lower back/hips painful, suffer with painful wrist (carpel tunnel). I have bad migraines that last anywhere up to a week at a time with sometimes only a day break between each one.. I struggle to get to sleep some days but I also struggle to wake up. I have really bad restless legs on some days and pain in my knees. Neck/collor bone pain. Not all these happen daily but often enough to drive me insane. The doctors say all the symptoms are because I suffered depression and have a jobs and kids to look after so I'm just worn out. I'm 25!
Thanks in advance for any advice x

Mar 23, 2019 3:46 PM

Are you thinking of Fibromyalgia or Chronic fatigue syndrome
Unfortunately both are diagnoses of exclusion.

I suggest full blood panel, including tests for rheumatic or arthritis type conditions with imaging of painful joints.

Mar 24, 2019 6:35 PM

Katyc94, I know it's frustrating when you know you are hurting and answers aren't easily found as to why. It took me 4 years before my fibromyalgia was diagnosed, 2 years to diagnose a pelvic mass that caused bowel & bladder symptoms (along with a long list of autoimmune issues that took another 3 years to identify). I've had depression and anxiety for decades and many doctors wanted to easily say "that's it" without looking further. But there are doctors who will continue to search until answers are found.

Your need to keep a journal of every day, of symptoms you have, whether it's a good day or bad day, how much sleep you got & if it was refreshing sleep or pain disturbed sleep, etc. The more info you can detail for them the sooner they can find the answers. And yes, it's sometimes by ruling out this or that which helps find the answers. For many of us on here it took years.

Also, as I've learned from the younger generation posts (I'm 57), sadly it seems to be typical for others to think just because someone is young they can't possibly be hurting as bad as they say (this is because they didn't have a visible issue going on). I'm not sure if I explained that very well but I hope you got what I meant. I'm having some fibro fog lately due to a flare up of pain & increased meds.

Just know that we all support you here; we've been through it and we understand the frustration. Don't give up looking for the right doctor to find the answers. Many of us have had to change doctors to get one who is willing to listen and more compassionate. And personally I'm finding the younger doctors (30s) are more knowledgeable about issues I have like Sjogrens. I'm trying to change all of my older doctors to younger ones. I'm sending hugs love and prayers that your doctor(s) will get to the bottom of what going on and get some relief for you sooner than later! As for being tired from taking care of kids...been there, done that! Try and set aside some time just for you each night, to take a bath, read a book, listen to music, etc. 🙂❤🙏🌼

Mar 24, 2019 11:28 PM

It also took me many years take it is diagnosis they came up with fibromyalgia it's Beatrice Tendencies and six one of pain conditions I will be frank for you and hope all goes but when I find out exactly what's causing it because it can help make a huge difference I start a painting class to find a new way to manage my pain because life is becoming unbearable I am so there was options out there just kind of stay informed and check in with these chats they make a huge difference

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