About two years ago, our son would complain of bad leg pain. We took him to the doctor and we were told it was growing pains. Those "growing pains kept getting worse, we went back to the doctor and was told the same thing. To give him Tylenol but Tylenol never worked. We got tired of hearing its probably nothing and its growing pains. These pains were happening two to three times a week and were not getting better. At this point, we did not know what to do.
We waited months to see a Specialist. Which we were referred back to his doctor. It was out of her study. His doctor did tons of blood work and everything came back good, but this Vitamin D was low by four points. We put him on a Vitamin D supplement and had dairy at least three times a day but that did not help either.
At this point, our son was sitting on the couch with his knees to his chest rocking and crying because of pain. We had enough, we wanted answers and wanted them now. We got a referral to another Specialist, but it meant months of waiting again and traveling an hour to two hours for an appointment.
September 2018, we got answers, not the answers we were looking for. We got a diagnosed but not the one we wanted. We were told our son has Amplified Musculoskeletal Pain Syndrome. There is no cure, there is no medication that can help or ease the pain. I felt like someone hit me hard in the chest, this was heartbreaking for me, of course, it could have been worse. I kept telling myself " it could be worse". I did a lot of praying. I would not say I was angry, we had a feeling he had fibromyalgia.
After the shock worn off, I was like in a game mood. I had to fix this, I had to do something to get rid of all his pain but deep down I knew whatever I did it would never get rid of his pain. I was hopeful, hoped we find answers to help him and I still looking for things that will help him. We went through six weeks of physical therapy, pool therapy, continued physical and pool therapy at home. Doing therapy has not really helped either. We are still on a waiting list for another physical therapy. We were told he needs to retrain his nerves. Some days are better than others, but we are starting to get back into bad days again.
AMPS effect his sleep(a lot of sleepless nights), his eating, his ability to move or to be able to sit still, makes him jump at night and the list goes on. I did a lot of research to find things that would help, I have tried weighted blanket, essential oils and nothing seems to work really. This is something he will have to learn to deal with to maintain his pain.
I want parents to be aware of AMPS. Not many kids this young have AMPS and it is rare.
Blessings,
April