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Avatar universal

Fibromyalgia

My son is 14 and has been suffering for a year. Symptoms started with very bad chest pain but all blood results came back clear. An endoscopy revealed mild acid reflux. After the endoscopy we were given the diagnosis of chronic fatigue / fibromyalgia . Having been initially relieved that we finally had a diagnosis we are now starting to think differently. Once you have been tarred with this brush it would appear the doctors are not interested. My concern is how quickly this diagnosis has been made. I've read people can wait years before getting this confirmed as tests for all other conditions are looked into.
My son gets pain only in one region and this has been attributed to acid reflux. (a year ago when this started the pain shifted around in his chest but this does not happen any more) I've noticed his hands and feet are often cold and at the moment he gets dizzy and nauseous which only improves when he is lying down.
We've been to the docs again today and he has agreed to do another endoscopy and he thinks the meds he is taking should improve the acid reflux and wants to investigate further.
The meds he is on is omeprazol (tried stopping this yesterday as it can cause nausea) and stemetil to help with the nausea.
Having read up on fibromyalgia my son does not appear to have many symptoms. He has had pain that has moved around in his chest, gets tired, can find it hard to sleep but again that has improved has cold feet and hands and now is getting dizzy. Some of the the later symptoms can all be caused by medication side effects?
We have started acupuncture which has been quite good so far, his pain has reduced. He is now missing lots of school, originally due to fatigue and chest pain and last week due to nausea.
Are the doctors correct in their diagnosis, can anyone suggest a way forward or shed any light on a similar experience?
2 Responses
Avatar universal
My daughter was diagnosed with fibromyalgia also. Later this was found to be wrong. I think you are right this can be a "we don't have a clue diagnosis". Is the chest pain in his sternum area? I would have the Doc test for D3 deficiency. This is a simple blood test. Make sure they test D3 and not D2! You can start him on vitamin D3 easily. D3 is cheap, and easy to get. Costco has 5,000 IU and Walmart etc also have D3. My daughter and than all the family was found to be deficient in D3.
She takes 8,000IU a day. I take 10,000IU a day. This is on advice from my Doc. It takes time to build up the right amount in the body. Symptoms will gradually subside. The sweet spot is between 50 and 70 mgl. The Doc tests us 2 times a year. For more info go to vitamindcouncil.org.

We like acupuncture and it did help a lot! We did regular acupuncture and allergy elimination acupuncture too. Both were great! Does he have any allergies? Severe allergies can cause the fatigue. Does he look like he has dark circles under his eyes?

Another place to check out for more info, would be the Immune Deficiency Foundation( IDF) their web- site is primaryimmune.org. People with immune deficiency can have lots of acid reflux, intestinal issues, as well as fatigue.  They have free publications you can request or read and print out on line. They also have names of immunologists in your community for you to get an opinion or a second opinion.

There is nothing worse than a sick child and not finding the answers that could help. Hope these ideas point you in the right area to find a solution.

Good luck, hang in there!
elbamom
Avatar universal
My 9 year old daughter has been diagnosed with fibromyalgia.  She started with walking pneumonia on 1/6/14 and has yet to return to school.  She ended up with severe lower back pain, weakened legs to the point she was wheelchairbound, in the childrens hospital for 12 days, released with prednisone, ciproflaxin and a diagnosis of mycoplasma neuropathy.  MRIs and LP are all negative, however her IGG was 5,000 when we started in January, and she just recently finished a 2 week course of doxycycline and it is still 3700.  Gabapentin from the neuro did not help the pain,  neuro sent us to rheum. who then diagnosed her with fibro.  She has severe spinal and back pain (is walking fine now) and has severe fatigue.  Her treatment was physical therapy.  We go to aqua p/t once a week and have tried actupuncture.  In our case it has shown no relief.  We have an appt. with a new rheum next week at a large childrens hospital hoping for some further insite or direction.  Both my pediatrician and physical therapist do not believe in our case it is fibromyalgia due to her continued infection.  I do know how painful it is though to watch.  Best of luck to you!  
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