[wytchywoman]

I have it, and I know a lot of the mamas here have it too, but I have yet to come across someone as young as my DS 1 ( 15) who has been diagnosed. We saw the rheumatoidologist (sp?) thursday and she said he definitely has it. The criteria is at least 11 out of 18 trigger points, he has 14, and they above and belowe the waist.

I feel awful for him. he hurts daily. Is it unreasonable for me to say how very unfair this is for a 15 year old to have to go through???
Dr gave us a script for baclofen to help ease the muscle spasms he's having in his back. I know this is commonly used for kiddos with CP, so any input on this med is greatly appreciated too.

Ps... wanted to add that we see the gastro on thursday and finally (hopefully) get some answers about lab work that was done back in march.

 

[irangel]

I personally do not have a child with fibromyalgia but my sister (not active on the board) was diagnosed around 14-16yrs. She had a hard time finding anyone else her age with fibromyalgia.

 

[williamsmommy2002]

I have fibro as does my mom. It is fairly common in the genetic condition that I have(Ehlers-Danlos syndrome) and I was diagnosed officially at about 24. I have had it i'm sure since my teens though. I went off all meds for it(besides pain meds) before ttc and am about to go in and ask to be put back on them because i'm having a very hard time. Thankfully I have a very high tolerance for pain.

My youngest ds has begun to complain about joint pain and exhibit other symptoms of my genetic condition and we are pursuing that right now. I hope he doesn't become a youngster who is eventually dx'ed with fibromyalgia.

 

[wytchywoman]

Thanks for the responses so far.
Still lurking to see if anyone else has a child with FM/CFS.

 

[ShadowLark]

Quote:

Originally Posted by williamsmommy2002 I have fibro as does my mom. It is fairly common in the genetic condition that I have(Ehlers-Danlos syndrome) and I was diagnosed officially at about 24. I have had it i'm sure since my teens though. I went off all meds for it(besides pain meds) before ttc and am about to go in and ask to be put back on them because i'm having a very hard time. Thankfully I have a very high tolerance for pain. My youngest ds has begun to complain about joint pain and exhibit other symptoms of my genetic condition and we are pursuing that right now. I hope he doesn't become a youngster who is eventually dx'ed with fibromyalgia.

My sister has EDS! But not fibromyalgia - she thought she did once, but it was ruled out.

 

[bandgeek]

I grew up with fibromyalgia but was not diagnosed until I was 18. I never remember not being in pain. I didn't know the pain wasn't normal until I was 16 and my boyfriend told me it was not normal! That's when I told my mom I needed to go to the doctor and she took me, but the doctor didn't do a darn thing (probably thought I was faking). I went to a different one when I was 18 and he sent me to three specialists and I was diagnosed (he already knew I had it, but I guess he just wanted to be sure?).

Anyway, I tried pain meds and sleeping meds. Nothing worked the way it should. Years later my dad was also diagnosed and he takes melatonin to help him sleep and he says it is *wonderful*. I'm scared to take anything since I have a SN baby in my bed who needs someone who can be alert at a moments notice.

For me, staying pain-free depends on 2 things....getting a good night's sleep and not overworking my muscles. I CAN lift heavy things or walk around the mall, but I have limits. I cannot lift boxes all day long or walk all day long. Well I can, but I pay for it the NEXT day. And sometimes the day after that. Usually a flare-up is gone within 2 days.

In school, I remember being in SO much pain and it really affected my concentration. By the end of the day, all I wanted to do was go home and sleep. Then my homework didn't get done and I had trouble sleeping at night.

By the time I was 17, I figured out I could tke 20 minute naps and it wouldn't affect my night-time sleep and it helped me get through the day.

It's been so long since I was a *child* with fibro that I forget what it was like back then, but if you have specific questions, just PM me because you will probably trigger my memory.

 

[wytchywoman]

Thanks bandgeek,
The baclofen was prescribed to help him sleep and help with the muscle pain. It's a new med so we have to see how well it works over the next few weeks or so. Sleep is a huge problem for him. On the plus side he is in an online school which enables him to sleep in a bit and doesn't frain him physically, on the down side he tends to stay up way late and I think that isn't doing much to help him establish healthy circadian rythyms either. Anyways, thanks for the input. I don't really have any questions as of yet, because this is still so new.

 

[williamsmommy2002]

Quote:

Originally Posted by bandgeek I grew up with fibromyalgia but was not diagnosed until I was 18. I never remember not being in pain. I didn't know the pain wasn't normal until I was 16 and my boyfriend told me it was not normal! That's when I told my mom I needed to go to the doctor and she took me, but the doctor didn't do a darn thing (probably thought I was faking). I went to a different one when I was 18 and he sent me to three specialists and I was diagnosed (he already knew I had it, but I guess he just wanted to be sure?). Anyway, I tried pain meds and sleeping meds. Nothing worked the way it should. Years later my dad was also diagnosed and he takes melatonin to help him sleep and he says it is *wonderful*. I'm scared to take anything since I have a SN baby in my bed who needs someone who can be alert at a moments notice. For me, staying pain-free depends on 2 things....getting a good night's sleep and not overworking my muscles. I CAN lift heavy things or walk around the mall, but I have limits. I cannot lift boxes all day long or walk all day long. Well I can, but I pay for it the NEXT day. And sometimes the day after that. Usually a flare-up is gone within 2 days. In school, I remember being in SO much pain and it really affected my concentration. By the end of the day, all I wanted to do was go home and sleep. Then my homework didn't get done and I had trouble sleeping at night. By the time I was 17, I figured out I could tke 20 minute naps and it wouldn't affect my night-time sleep and it helped me get through the day. It's been so long since I was a *child* with fibro that I forget what it was like back then, but if you have specific questions, just PM me because you will probably trigger my memory.

I have taken melatonin to help with sleep. It doesn't knock you out like a narcotic does. The last time I took it. I had a really rough night though and woke up all weird. Both of my boys take it for sleep without any real issues though. Lack of sleep really affects me. It's been hard because my boys have not been going sleep until late because of summer. Then I wake early. I'm hoping being back at school will help. I was on a lot of meds before ttc and I did feel a bit better. Since I have also have a lot of joint damage, there is a lot of oppurtunity for pain there. I didn't like being on all the meds also because it affected my memory too much.