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Posted By : MonarchX - 9/10/2017 5:43 PM
I am totally at a loss. My 16 yr old daughter has painful, swollen joints and muscles. She is exhausted and sleeps all the time. She's in so much pain walks sideways down the stairs one step at a time, holding on to the railing. She's depressed, can't participate in any activities and losing so much school! It is in the soles of her feet (tendons) as well as ankles, wrists, fingers, neck, jaw, etc. Some days the joints are so distorted and painful she cannot hold a fork to eat. This is the second time and most severe.Both came on after very long flights. The first time lasted about 3 weeks and was fairly mild. She was treated for Mycoplasma and symptoms subsided. This time it's only getting worse.

We had 4 blood panels over the last 8 months. ANA is consistently at 6:40 (I'm told it's the highest the test goes). Pattern is homogeneous/diffuse. Tests show no Rh factor or Lupus. However there is elevated C-reactive protein and uric acid but not much else. She's been put on and then off Plaquinil. Currently taking Mobic and Lyrica. I've been told by Rheumatologist she does not have Connective Tissue Disease, etc. No one seems to have a clue about what's going on and every day it's worse.

As she already has PTSD from some terrible traumas she endured as a kid this is really setting her back. I have been to every doctor here and no one has any ideas what's going on. They just seem to order more random tests which are very difficult for her. I'm at a loss for what to do next. In reading through past forums I noticed others from the past posting but nothing recent. Any help would be appreciated.

Posted By : Spacey_Strawberry - 9/11/2017 1:38 AM
Hi there,

I am so sorry about what you are going through right now. It must be so hard to watch your child be in pain and not be able to do anything. You must feel helpless, but I guarantee that you are helping just by caring so much. I have been in lots of pain myself and whenever my husband is empathetic (instead of frustrated or just totally ignoring it) I do feel better. Maybe not physically better, but the mental state can be sensitive when in lots of pain. Empathy helps A LOT.

I do have to admit that I know nothing about those labs that you mentioned, so I don't have any advice on that. Sorry about that. Whatat you are going through is awful and it convinced me to finally make an account and this is my first post.

First, I want to make sure you are taking care of yourself. What you are going through is quite hard! I hope you have a therapist or support group so you have someone to talk to. You need someone that has empathy FOR YOU and all you are going through.

The other thing I noticed is that you said that she had been through trauma. I do remember that my pain doctor said that when it comes to idiopathic pain, 60% of woman that have it have been through some sort of trauma in their past.

Then again it took doctors 20 years to figure out what was wrong with me, and actually now that I think about it I'm the one who figured it out (do her symptoms or tests fit with Lyme disease at all?) So it is satisfying to be able to say to my psychiatrist (in the hospital, not mine full time) that this is not all in my head!

But I can't rule out that my past may have made my pain worse. It did seem to help a bit when I found the correct antidepressant for me.

Well good luck to you in figuring it out, and make sure you're taking care of yourself as well. She has your support and I'm sure that means more to her than anything. Even if she doesn't show it.

Posted By : straydog - 9/11/2017 8:02 AM
Hi Monarch & welcome to the forum. It's always hard when one of our kids are sick & we can't get answers.

The ANA is not used solely for dxing an AI disease. It can be used as a marker to rule out many things. But keep in mind that perfectly healthy individuals can have a positive ANA & have nothing wrong with them.

How has her PTSD been managed over the years? Has she been receiving counseling for this. If she is suffering with depression too, both of these can have a dramatic effect on her physical being.

Do you have access to a children's hospital in your area or one not too far away? I suggest trying to get her in one. You can also check into the nearest teaching hospital. They may not accept her because of her age, I really do not know, but a phone call will tell you.

I do hope you can get her some help. As the above poster said, keep yourself healthy too.

Take care.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : ChronicPain1970 - 9/12/2017 5:45 AM
Good morning. I have also seen a rheumatologist about 1 year ago for follow up blood work & exam. I plan to go back again soon because I'm getting worse and I was told do return if my symptoms get worse. I tried the "wait and see" approach. Back around 2010 or 2011, I had blood labs including Sed Rate (ESR), CRP, ANA, etc...all were elevated but my ANA titer was exceptionally high/positive. All of these "positive" tests resulted in nothing really being done. My last labs were mixed: my C4 Complement was right on the edge of being abnormal/too high, my ESR & CRP were within normal level but again my ANA was very positive. I can't remember the exact wording but I think it homogenous, speckled. At my rheumatologist visit 1 year ago, I was told that based on my exam and test results to date that very likely I will have Rheumatoid Arthritis one day.

Some AI Diseases run in your family. My late mother and all 3 of my older sisters one or more AI Diseases.

I agree with the other posters to keep at it. I'm facing the same struggle as you right now to get something done about my whole body essentially falling apart.

Best wishes and good luck.

Posted By : Ljm2014 - 9/12/2017 11:38 AM
Sounds inflamatory, strange that the tests do not indicate why..

Does she use any over the counter things, like motrin?

Curamed is a supplement of turmeric that helps me with pain and stiffness.

Also wringing towels in epsom salts and placing them on sore areas helps some..

I have chronic pain and does my daughter.she is getting some help with acupuncture and cranial sacrial theerapy

Posted By : rocckyd - 9/12/2017 8:22 PM
There are over 100 types of arthritis, and some are due to wear and tear, but other types can affect organs, too.
A rheumy who only uses labs to diagnose a problem is a Dr that you don't need to see again.

Don't give up, there's an answer out there.
Single mom to my little man 11yrs old
39yrs old. JRA since a kid. Chronic Uveitis, pleurisy, pericarditis, intersticial lung disease, sjorgrens syndrome, Cushing's Syndrome, gastroparisis
Bilateral TMJ replacements due to bone fusion, port-a-cath, g/j feeding tube, antiphospholipid antibody syndrome(my blood fights itself) epilepsy, MCTD, dysphagia(unable to swallow correctly)

Posted By : Mercy&Grace - 9/13/2017 5:21 PM
MonarchX,as straydog mentioned look for the closest teaching hospital. Teaching hospitals can often be of great help with the private sector isn't. It is very likely her PTSD is contributing to a certain amount of her physical symptoms. Teaching hospitals treat physical as well as mental conditions. They also accept Medicaid, private insurance and self pay patients.

Does she have an IEP ? If not, have you discussed this with her school counselor ? IEP are for students that have physical and/or mental impairments that affect their ability to learn like their classmates.

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