How can I deal with the trouble of being undiagnosed and feeling like a liar? I am 16 and have muscle weakness, severe cramps and mild to moderate muscle, bone and joint pains. I feel like Im weak or attention seeking. Am i? How can I deal with this until my next appointments?
Answer Summary
Members shared powerful encouragement with a teenager struggling with undiagnosed muscle weakness and pain, assuring them they are not... Read more
I am a Mom of an 18 year old. Over the past couple of years we have chased symptom after symptom, even with great insurance it has been pretty expensive. We have seen most specialists, changed primary care providers, and of course Dr. Google. Well my son and I at about the same time came up with "it has got to be the endocrine system" Well an endocrinologist will not see you without a referral. Getting the referral was so difficult, I didn't think it was ever going to happen.
Not that it is something to celebrate but Yippeee! It WAS the endocrine system. My son has Hyperthyroidism, an enlarged thyroid with 2 nodules. Getting him on the medication was literally flipping a switch. Almost all symptoms subsided within a week. I think that what helped us persevere, is that 13 years ago I had been diagnosed with a rare auto immune disease, so we knew that there were things out there that were beyond the primary care and other specialty doctors.
I will admit there were plenty of times that his Dad and I thought well maybe it is psychological, and there was no doubt that he had anxiety, but even the psychologist thought that it was anxiety related. We decided to stay they course and insist that he be referred to the Endocrinologist.
Unfortunately, it may now be a disqualifying illness from him serving in the National Guard something he has wanted to do for a long time.
I would suggest that you write a letter to which ever parent you are closer to or both explaining what you are physically feeling and how this is making you scared and the not knowing what is going on in YOUR body is very upsetting. List all your symptoms and ask to see your primary care doctor and begin to eliminate the possibilities.
I know that our major stumbling block was my son always "looked" healthy. Keep a diary of your symptoms, what they are, what your feeling, pictures if appropriate, and what you were doing prior to the symptom starting. If your parents talk about getting you psychological help don't be resistant this is an adult that you can get on your side. Not to mention feeling ill, and no one taking you seriously is very stressful and can't be helping your medical status.
The best of luck sweetheart!! If you want to talk or vent I am here for you!!
No, you are not attention seeking. I have found several times in my life where Drs told me that. First was because of severe stomach aches which turned out to be a food allergy. Then fibromyalgia and back problems. Just had a Dr tell me the other day that my hip pain was emotional. I have found when Drs don't know what to do, they blame it on the patient and it becomes something that's all in your head. Don't believe them. Keep fighting and find a different Dr that will actually be helpful. My latest Dr is the chiropractor which has helped my hip pain more than anything.
Many times tests do not come back positive until things worsens. I've felt my joints hurting and nothing shows up then had it checked many months later and sure enough there's a problem there. I could feel it happening. I think your basically feeling something in the process of happening as well. Many test don't pick up on things in the early stages. Watch Dr Morse on u tube. Type his name and a symptom or two and you will get vidoes with your answers. He a naturepath who understands how the body works and why we get sick. He taught me a lot. Your young and you can turn your situation around. You know your own body better than anyone and you know something has changed, listen to what its telling you. Dr. Morse makes so much sense don't wait for things to get worse.
When you next go to the doctor take someone with you for support. Ask them if you can be tested for fibromyalgia as thus is what your symptoms seem to be reflecting. It’s horrible when no one believes you and as your symptoms are invisible it is so much harder for you. You take care and don’t give up.
Well if your not not making it up then its real. Just because the allopathic medical docs can't validate you it just means they don't know the answer. Many tests come up negative until it the condition is much worse. I could feel my joints hurting before it showed on an MRI. I could feel it happening. I recommend you type into u tube, Dr Morse and the list of your symptoms and many videos will come up to explain why you are feeling what your feeling. He opened my eyes to why my health deteriorated and how to fix things. I'm not all the way there yet but improving. Trust what your body is telling you. Good luck.