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PuddleJumper1

Pediatric Amplified Musculoskeletal Pain Syndrome / Juvenile Primary Fibromyalgia Syndrome (JPFS)

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Anyone have a child with these syndromes or are familiar with them? We're just starting the journey of information discovery and treatment/recovery for dd.

 

We saw an amazing rheumatologist yesterday who diagnosed dd with AMPS along with chronic fatigue. She's been suffering for the last 18 months. 

 

Our next step is an MRI of her hands, physical therapy and a referral to the Pain Management Clinic. We'll also be getting her in with a counselor to help with the emotional toll and to help her adjust to this. He also agrees with her GI that a gluten free trial is the way to go but we need to wait until after her MRI. She has all the same symptoms my son with Celiac had prior to diagnosis but she tests negative for CD in blood and biopsy and they think this is significant. 

 

I'd love to hear any and all experiences, ideas and thoughts as we start down this path. Nothing is too out of the box for us. 

 

He did tell us that they consider this to be different than adult Fibromyalgia but if you have Fibromyalgia (or know someone who does) I'd welcome experience from your journey too!

 

I am so, so glad we have an answer and a starting point to help her.

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Did the rheumatologist do blood tests to check for inflammation and different antibodies? You want to check for juvenile rheumatoid arthritis and lupus which is done by checking antibody levels. I'm sorry your child is going through this. I have lupus and I don't really have much advice other than don't discount her pain( I'm not al all suggesting that you do but sometimes with children it easy to do that). It's hard enough that I have pain often, it really hurts me when others dismiss my pain. Keep us updated. Hugs

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Thank you for asking about this. I had never heard of these conditions, so I took a quick look at some sites about them. My youngest son is experiencing many of these symptoms. We will be digging deeper into getting a diagnosis and treatment.

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Did the rheumatologist do blood tests to check for inflammation and different antibodies? You want to check for juvenile rheumatoid arthritis and lupus which is done by checking antibody levels. I'm sorry your child is going through this. I have lupus and I don't really have much advice other than don't discount her pain( I'm not al all suggesting that you do but sometimes with children it easy to do that). It's hard enough that I have pain often, it really hurts me when others dismiss my pain. Keep us updated. Hugs

 

They checked everything it seems before coming to this. She has been through GI, Immunology and Endocrine who did gallons of blood work. The doctor yesterday was amazed by what had been done already. When I asked him if there was anything he could test for he said there wasn't really anything left to check. He's doing the MRI to rule out what he called 'dry arthritis'. They haven't ruled out the possibility of her testing positive for some things in the future so he'll be following her closely.

 

The invisibility of this syndrome is one of the hardest parts! I think we're doing pretty good with it at home but it is hard out in public or with friends. She looks fine but under the surface she's in a lot of pain. Thanks for the reminder to be careful of that!

 

I have a second cousin living with Lupus.  :grouphug:

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Thank you for asking about this. I had never heard of these conditions, so I took a quick look at some sites about them. My youngest son is experiencing many of these symptoms. We will be digging deeper into getting a diagnosis and treatment.

 

 

We have been searching for an answer for a long time. It is definitely a marathon and not a sprint. Because of other family issues (celiac and autoimmune) we had to rule a lot of stuff out.

 

One thing we didn't realize is just how deeply this was affecting her emotionally. Continually seeing doctors who had no answers has taken a toll on her. I think, after yesterday, she is greatly encouraged to at least have a name but she is still very raw and vulnerable in that area. 

 

:grouphug:  to you and your son. It is so hard to see them suffering and not be able to give them answers or change things. 

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We have known for years that ds has a connective tissue disorder, possibly Marfan's, which my Dad had. He has an appointment with a cardiologist who specializes in this next week.

 

But he also has frequent migraines, serious sleep issues, and tons of non-specific pain, which aren't typically identified with Marfan's.

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We have known for years that ds has a connective tissue disorder, possibly Marfan's, which my Dad had. He has an appointment with a cardiologist who specializes in this next week.

 

But he also has frequent migraines, serious sleep issues, and tons of non-specific pain, which aren't typically identified with Marfan's.

 

Marfan's was one of the first questions that came up yesterday! My kids both have severe Pectus Excavatum (which has been repaired) and a few other markers. I was sent to genetics when I was 18 to rule out Marfans as I had a lot of markers. I had the cardiac workup and the eye testing. My kids have never been tested directly to rule it out but have had most of the tests they do in the course of other issues. 

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They checked everything it seems before coming to this. She has been through GI, Immunology and Endocrine who did gallons of blood work. The doctor yesterday was amazed by what had been done already. When I asked him if there was anything he could test for he said there wasn't really anything left to check. He's doing the MRI to rule out what he called 'dry arthritis'. They haven't ruled out the possibility of her testing positive for some things in the future so he'll be following her closely.

 

The invisibility of this syndrome is one of the hardest parts! I think we're doing pretty good with it at home but it is hard out in public or with friends. She looks fine but under the surface she's in a lot of pain. Thanks for the reminder to be careful of that!

 

I have a second cousin living with Lupus.  :grouphug:

 

My daughter has an invisible illness too, it can be a real struggle in so many ways.

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I just read the quotes under your signature.  It's like you have my life.

I wish you the best in your quest for treatment and answers.  BTDT, and I still struggle with the answers we have. :grouphug: :grouphug:

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We have known for years that ds has a connective tissue disorder, possibly Marfan's, which my Dad had. He has an appointment with a cardiologist who specializes in this next week.

 

But he also has frequent migraines, serious sleep issues, and tons of non-specific pain, which aren't typically identified with Marfan's.

 

 

Marfan's was one of the first questions that came up yesterday! My kids both have severe Pectus Excavatum (which has been repaired) and a few other markers. I was sent to genetics when I was 18 to rule out Marfans as I had a lot of markers. I had the cardiac workup and the eye testing. My kids have never been tested directly to rule it out but have had most of the tests they do in the course of other issues. 

 

Ehlers-Danlos Hypermobility Type doesn't have a test. Loey-Dietz is relatively recently discovered and it does have a test. 

 

Pain is huge in EDS Hypermobility type. Often orthostatic problems (POTS, etc.) and Mast Cell Activation disorders go along with this very frequently. Sleep problems, too. I won't even mention fatigue. FATIGUE, FATIGUE, FATIGUE. So I lied. Take a look at the free webinars from the leaders in the field at Chronicpainpartners.org to get ideas about how to help.

 

My dd was seen by a geneticist and was blown off. But her primary and rheumatologist are absolutely convinced she has a connective tissue disorder along the lines of EDS and want her to go to Johns Hopkins. She has pain and we have a script for x-rays of her neck and hip, which are in bad shape, and all the tests indicate it's not autoimmune. She's also supposed to go see a sleep specialist. My feeling is that even if her problem turns out not to be EDS, her problems are very EDS-like, so I can look to those experts for help. 

 

Her joints are only one of her problems but if she could exercise, it could be very helpful with the other stuff. But if you have joints that pop out and very unstable ankles, it's hard to know what to do safely. She did a round of aquatic therapy and now swims once a week. That's been good for her and I would recommend it for anyone with pain and joint issues. I think gentle swimming may also be safe if there are heart issues, but you'd have to ask a doctor. 

 

Anyway, we've been through similar stuff and we're continuing to go through it. You're not alone.

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Tiramisu, I think my son (5) probably has EDS. He has low muscle tone, loose joints and had dialated aortic root. He was tested for Loey-Dietz and it was negative, thankfully. We see the cardiologist and geneticist again soon. I guess I should take him swimming more So he gets over his fear of water.

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It is difficult.  We have been trying to get to the bottom of our dd's chronic pain and migraine symptoms for years, and all we can tell at this point is that she has a possible connective tissues disease.  We've ruled a lot of things out, in the meantime.

 

Next week we are getting started on another dd's chronic fatigue (but no pain), which has been ongoing for several years.  We do seem to have some autoimmune issues in the family.

 

We found out just recently that another daughter has PCOS, which apparently has numerous symptoms that can mimic a lot of other things.  This may explain a lot of little health issues in our family!  And if it runs in the family, the boys in the family can have their own versions of it.

 

 

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I just read the quotes under your signature.  It's like you have my life.

I wish you the best in your quest for treatment and answers.  BTDT, and I still struggle with the answers we have. :grouphug: :grouphug:

 

I re-read those quotes the other day in light of dd's diagnosis and realized how much they relate to her. :) My youngest was born with a rare (1 in 25,000) chromosome syndrome in which he is only one of a handful that present the way he does. He's rarer than rare. We've been on a quest for answers for him the last 13 years. Adding dd to the mix jacked up the stress level and the crazy schedule but in some ways having lived with ds for 13 years has made this a little easier to deal with. 

 

:grouphug:  I don't like the answers either! 

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Ehlers-Danlos Hypermobility Type doesn't have a test. Loey-Dietz is relatively recently discovered and it does have a test. 

 

Pain is huge in EDS Hypermobility type. Often orthostatic problems (POTS, etc.) and Mast Cell Activation disorders go along with this very frequently. Sleep problems, too. I won't even mention fatigue. FATIGUE, FATIGUE, FATIGUE. So I lied. Take a look at the free webinars from the leaders in the field at Chronicpainpartners.org to get ideas about how to help.

 

My dd was seen by a geneticist and was blown off. But her primary and rheumatologist are absolutely convinced she has a connective tissue disorder along the lines of EDS and want her to go to Johns Hopkins. She has pain and we have a script for x-rays of her neck and hip, which are in bad shape, and all the tests indicate it's not autoimmune. She's also supposed to go see a sleep specialist. My feeling is that even if her problem turns out not to be EDS, her problems are very EDS-like, so I can look to those experts for help. 

 

Her joints are only one of her problems but if she could exercise, it could be very helpful with the other stuff. But if you have joints that pop out and very unstable ankles, it's hard to know what to do safely. She did a round of aquatic therapy and now swims once a week. That's been good for her and I would recommend it for anyone with pain and joint issues. I think gentle swimming may also be safe if there are heart issues, but you'd have to ask a doctor. 

 

Anyway, we've been through similar stuff and we're continuing to go through it. You're not alone.

 

So sorry your dd is in this mix Tiramisu!  :grouphug:

 

I'm going to look closer at these. Dd is planning to get back into the pool this summer. I think it will be great for her. 

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It is difficult.  We have been trying to get to the bottom of our dd's chronic pain and migraine symptoms for years, and all we can tell at this point is that she has a possible connective tissues disease.  We've ruled a lot of things out, in the meantime.

 

Next week we are getting started on another dd's chronic fatigue (but no pain), which has been ongoing for several years.  We do seem to have some autoimmune issues in the family.

 

We found out just recently that another daughter has PCOS, which apparently has numerous symptoms that can mimic a lot of other things.  This may explain a lot of little health issues in our family!  And if it runs in the family, the boys in the family can have their own versions of it.

 

Good heavens!  :grouphug:  You sound like us. Our family tree is a mess of autoimmune and connective tissue issues. Unfortunately for my kids, dh's mom suffered from issues too so they are getting hit from both sides.

 

PCOS was something they were looking at early on for dd.

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Tiramisu, I think my son (5) probably has EDS. He has low muscle tone, loose joints and had dialated aortic root. He was tested for Loey-Dietz and it was negative, thankfully. We see the cardiologist and geneticist again soon. I guess I should take him swimming more So he gets over his fear of water.

 

I know it must be so scary to face a dilated aortic route in such a young child, but according to a webinar I watched recently from Chronicpainpartners, dilated aortic root in EDS usually has a good prognosis since they rarely progress. 

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It is difficult.  We have been trying to get to the bottom of our dd's chronic pain and migraine symptoms for years, and all we can tell at this point is that she has a possible connective tissues disease.  We've ruled a lot of things out, in the meantime.

 

Next week we are getting started on another dd's chronic fatigue (but no pain), which has been ongoing for several years.  We do seem to have some autoimmune issues in the family.

 

We found out just recently that another daughter has PCOS, which apparently has numerous symptoms that can mimic a lot of other things.  This may explain a lot of little health issues in our family!  And if it runs in the family, the boys in the family can have their own versions of it.

 

 

So sorry your dd is in this mix Tiramisu!  :grouphug:

 

I'm going to look closer at these. Dd is planning to get back into the pool this summer. I think it will be great for her. 

 

 

Good heavens!  :grouphug:  You sound like us. Our family tree is a mess of autoimmune and connective tissue issues. Unfortunately for my kids, dh's mom suffered from issues too so they are getting hit from both sides.

 

PCOS was something they were looking at early on for dd.

 

I know I remember reading that autoimmune disorders can be more prevalent in people with heritable connective tissue diseases. We have the autoimmune issues in our family, too. After a few years of fatigue, dd presented with a few slightly elevated auto-antibodies when she was seventeen. They sent her blood to a top clinical immunology lab and she had an ANA over a thousand but the other antibodies were good so her rheumatologist decided she didn't need medication. She still has to go in every six months to see the rheumatologist. At the last testing, things looked great. Her PCP is still concerned about one auto-antibody that's still elevated because of patients she's seen with it developing awful clots, but we're still just watching.

 

About PCOS, there has been some research about that and heritable connective tissue diseases, too. It might be specifically related to Marfan's. The tissue that's affected by the Marfan mutation is an important part of the ovaries, from what I remember. At the same time, on EDS boards, I've seen talk over the years about PCOS. My dd is being evaluated for PCOS, but she has another endocrine-related issue that she's dealing with right now that's more serious. That's taken priority over EDS and PCOS for now. :(

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Anyone have a child with these syndromes or are familiar with them? We're just starting the journey of information discovery and treatment/recovery for dd.

 

We saw an amazing rheumatologist yesterday who diagnosed dd with AMPS along with chronic fatigue. She's been suffering for the last 18 months.

 

Our next step is an MRI of her hands, physical therapy and a referral to the Pain Management Clinic. We'll also be getting her in with a counselor to help with the emotional toll and to help her adjust to this. He also agrees with her GI that a gluten free trial is the way to go but we need to wait until after her MRI. She has all the same symptoms my son with Celiac had prior to diagnosis but she tests negative for CD in blood and biopsy and they think this is significant.

 

I'd love to hear any and all experiences, ideas and thoughts as we start down this path. Nothing is too out of the box for us.

 

He did tell us that they consider this to be different than adult Fibromyalgia but if you have Fibromyalgia (or know someone who does) I'd welcome experience from your journey too!

 

I am so, so glad we have an answer and a starting point to help her.

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Dear puddle jumper 1

 

Just seen this old post and wondered how your daughter is getting along now.

We are at the same point as you were when you first posted this, just been diagnosed with biomechanical joint pain with Amplified Pain Syndrome and am in a state of worry and confusion after a good 18 months of severe flare ups and quiet periods of increasing joint pain. Numerous a and e visits and my daughter being crippled and unable to walk.

We have had previous reactive arthritis diagnosises and her immune system does seem weak, low white blood count. Gluten intolerance has been an issue and they are investigations coeliac again, previous negative biopsy.....

 

We are under a paediatric Rheumatologist and started phsio and just about to embark on amitriptline treatment as well as getting a referral to a pain management clinic.

 

Just wondered how you were doing a couple of years along the line, really hope your daughter feeling well..

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I just want to say hugs to you and congratulations on finally getting answers. As someone who has been on a quest to find answers myself I know what a huge hurdle that is. I've been diagnosed with fibro but my gut (which is also a hot mess!) tells me it's something more. It's an exhausting and very defeating journey. Best of luck to your daughter.

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Dear puddle jumper 1

 

Just seen this old post and wondered how your daughter is getting along now.

We are at the same point as you were when you first posted this, just been diagnosed with biomechanical joint pain with Amplified Pain Syndrome and am in a state of worry and confusion after a good 18 months of severe flare ups and quiet periods of increasing joint pain. Numerous a and e visits and my daughter being crippled and unable to walk.

We have had previous reactive arthritis diagnosises and her immune system does seem weak, low white blood count. Gluten intolerance has been an issue and they are investigations coeliac again, previous negative biopsy.....

 

We are under a paediatric Rheumatologist and started phsio and just about to embark on amitriptline treatment as well as getting a referral to a pain management clinic.

 

Just wondered how you were doing a couple of years along the line, really hope your daughter feeling well..

 

After reading your post, I asked my dd what she'd say to someone just getting diagnosed. 

 

"Dig your heels in and keep moving forward. It will be difficult (sometimes feel impossible) but it will be worth it"

"Stretch as much as you can and find something physical to do" Dd chose TKD (with her drs blessing) and it has been wonderful for her.

"Tell people how you feel even when you don't want to - keeping your feelings all inside is bad" (this was a major issue for dd. The emotional state she was in by the time she was diagnosed was heartbreaking)

"Sitting in a dark room, in the quiet, by yourself is not always bad - some days you just have to but don't allow yourself to isolate from your family and friends"

 

Now from me :) . It has been one of the most difficult journeys we have been through but also one of the most rewarding. There were times we thought we'd never make it - times we thought we were losing dd. The emotional and mental struggles were every bit as big as the pain in her case. Everything we've been through with dd over the last few years has been worth it a thousand times over. I'd never want to live through it again but I'd do it in a heartbeat if we had to. For us, treatment meant moving 3 and 1/2 hours from home for 5 weeks for dd to take part in an intensive, daily pain clinic (physical therapy, occupational therapy, cognitive behavior therapy, counseling and medical visits). We just went back for her year post-treatment visit and her team was so amazed and impressed with how she is doing. She truly is a totally different person than she was when we started. When we returned from the 5 week clinic dd continued PT closer to home, as well as weekly counseling visits with a psychologist that works with children/teens with chronic pain. I believe her counselor has been a huge part of dd's continued positive outcome. She also sees a doctor who specializes in integrative medicine and naturopathy who has been working with us on diet and supplements. When we had our last meeting at the end of pain clinic, the team asked dd to find something physical she wanted to do on an ongoing basis. She chose tae kwon do. It was difficult as first but it has been transforming for her. There are a few things she can't do (push ups - her main pain centers in her wrists) but she has come so far in just a short year. Her instructor is very pleased with her progress. This is a teen who, before the pain clinic, couldn't even walk across campus and had to lay down every day due to intense pain and headaches. Her transformation in all areas has been amazing. It will be a lifelong struggle for her but she is in a great place right now. We've had a few bumps in the road along the way but she keeps moving forward. Feel free to send me a pm if I can answer any questions. 

 

Came back to add - at first, we, as parents, were making decisions because dd just wasn't in a place to do it for herself but as time went on and she improved and got stronger mentally and physically we turned things more over to her. We let her decide what she wanted to do and how. For instance - she chose to drop PT right before Christmas because she felt it wasn't helping anymore. She was right on track. We've seen a more positive outlook and physical strength since she dropped it. Her pain doctor agreed when we saw her. Dd has also been completely in charge of medication (for her it was prozac). At first she very reluctantly tried it because she was struggling so bad but when she decided she wanted to stop, we let her. That has been very important for her - knowing she has our complete support but also knowing that we respect her wishes and decisions. If at any time we had to step in for her safety she knew we would. She is newly turned 18.

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