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Old 05-23-2005, 12:51 PM   #1
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Post Juvenile Primary Fibromyalgia Syndrome: Teens and PreTeens

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Here is some info about JPFS. I just thought it was time to bring it up again, because of the increasing amount of "young people" with this condition.

We had a thread awhile ago that discussed this, and there really isn't much info out there about JPFS, so obviously it needs to be further researched.

I remember when I was younger, those "growing pains" we all felt as a kid...well some research indicates that this could be a small sign of JPFS, as well as young folks falling asleep in class. Our society is so quick to slap and ADD tag on some of these kids who maybe, just maybe, are showing signs of JPFS.

Anyway, here is some of the information I have regarding JPFS:

Fibromyalgia in teenagers is being increasingly recognized.

Fibromyalgia in children; diagnosis and treatment.

Fifteen children (16 years and younger, 10 females, 5 males, mean age 13 years) with juvenile primary fibromyalgia syndrome (JPFS) were seen in a private rheumatology practice over two years. This represented 45 percent of the total number of pediatric rheumatology patients.

Symptoms included polymyalgias, polyarthralgias, nonrestorative sleep, difficulty concentrating in school and fatigue. Examination revealed typical tender points, absence of joint swelling, synovitis or nodules and absence of neurological findings. Dolorimetry was abnormal and standard laboratory tests were normal.

Most of these patients (67 percent) had seen three or more doctors prior to their rheumatological evaluation and not (60 percent) were told they had juvenile chronic arthritis. Other diagnoses offered were "growing pains" (20 percent), hysteria (7 percent) and psychological problems (7 percent).

None of the JPFS patients responded to salicylate or other anti-inflammatory medication. Most (73 percent) responded to cyclobenzaprine, mean dose 12.75 mg. (range 5-25 mg. qhs). JPFS is a very common pediatric rheumatologic problem and is confused with other disorders. Reassurance is very important in the therapy since many parents are fearful that their children may have a potentially crippling disorder. Medication, especially with tricyclics, moderate exercise and proper sleep are also mainstays of therapy.

Non-specific musculoskeletal pain in preadolescents. Prevalence and 1-year persistence.
A 1-year follow-up study of 1756 third- and fifth-grade schoolchildren was conducted with a structured pain questionnaire to assess the prevalence and persistence of self-reported musculoskeletal pain symptoms and disability caused by pain. At follow-up, 1626 (92.7%) children participated in the study.

Pain at least once a week persisted in 270 (52.4%) of the 564 children who reported musculoskeletal pain at least once a week in at least one part of the body at baseline. Of the regional pain symptoms, neck pain had highest persistence and, in girls, significantly more than in boys. Persistence of pain was not related to school grade.

Widespread pain, determined as in the criteria for fibromyalgia, was found in 132 children (7.5%) and persisted in 35 children (29.7%, 95% CI 21.9-38.4)at follow-up.***I am not quite sure what these numbers indicate nor what the CI 21.9-38.4 means, sorry.*** Disability was more severe in children with pain symptoms in more than one area.
This study showed that about half of the preadolescents complaining of musculoskeletal pain at least once a week at baseline had persistent pain symptoms at follow-up. The prognosis of widespread pain in preadolescents was almost the same as the previous findings in adults.

And finally:

Primary juvenile fibromyalgia syndrome and chronic fatigue syndrome in adolescents.

Chronic fatigue syndrome (CFS) and primary juvenile fibromyalgia syndrome (PJFS) are illnesses with a similar pattern of symptoms of unknown etiology. Twenty-seven children for whom CFS was diagnosed were evaluated for fibromyalgia by the presence of widespread pain and multiple tender points. Eight children (29.6%) fulfilled criteria for fibromyalgia. Those children who met fibromyalgia criteria had a statistically greater degree of subjective muscle pain, sleep disturbance, and neurological symptoms than did those who did not meet the fibromyalgia criteria. There was no statistical difference between groups in degree of fatigue, headache, sore throat, abdominal pain, depression, lymph node pain, concentration difficulty, eye pain, and joint pain. CFS in children and PJFS appear to be overlapping clinical entities and may be indistinguishable by current diagnostic criteria.



Okay, there ya have it. Hopefully there will be more research done regarding FM in our youth (school age). It just seems that more and more is being "uncovered" regarding FM and it's many many facets!

Hugs to all,
tk

Last edited by Administrator; 07-20-2005 at 10:37 AM. Reason: changed title per request

 
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Old 05-23-2005, 04:15 PM   #2
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Re: Juvenile Primary Fibromyalgia Syndrome

Hey all,

FM was called "Fibrosistis" (something like that), then it was called simply "Myalgia" which is a term still used today, but only to mean, widespread pain.

Fibromyalgia was first given it's official name and dx in the early 1980's.


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tk
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Old 06-06-2005, 01:06 PM   #3
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Re: Juvenile Primary Fibromyalgia Syndrome

RGW,

I'm so glad you find the Fibro board helpful.
You said you take a vitamin supplement? Have you checked out the very first thread posted on the FM board? It tells about all the different supplements, amino acids and anti-oxidents that are especially helpful for FM patients. Malic Acid is one of the best ones. Believe it or not so is Cayenne. I don't think it's listed in the thread though. There is a couple of books authored by a Dr. Rodger Murphee, and he has a whole list of different supplements that he recommends for FM and CFS.

Also, have you checked out the thread titled: "The List (again) for the Newbies" It lists most of the typical symptoms of FM. Although it does list symptoms of other conditions, like Chronic Fatigue Syndrome,Myofascial Pain Syndrome, Ms and Lupus. These conditions "overlap" in some areas as far as symptoms go. Tho they are entirely different conditions.

Getting the "evil eye" of judgment from others is, unfortunately one of the worst "symptoms" of having FM. I believe that this can be one of the biggest hurdles to get over. It really shouldn't matter to us with FM what others think of us, but it does, it really does, even if only a little bit. Moreover, it matters what WE think of OURSELVES. And it is very normal to go through feelings of "guilt" because we aren't what we used to be. Our house isn't as clean, our floors need mopping, the dust on our furniture is so thick you can write a letter in it, the dishes stay in the sink, or in the dishwasher, laundry overflows the hamper. Oh yeah, been there, still there. And it IS probably, at least for me, one of the most frustrating parts of having FM. That, and not being "part of life" like I used to be. Staying home more than ever. Having to say "no" to invitations to venture out of the house on more occassions than you care to count. I used to have a very active lifestyle. Going out with friends, my husband, going swimming, going to the beach, of course now my back is so messed up I couldn't get out of beach chair for the life of me! LOL I used to walk several times a week at least 3 miles. In my 20's and 30's, I was a long distance runner. I had to quit my job of nearly 10 years at the same place. I waitressed for many years. I loved it. Frustrating? Oh yeah. I'm still; after being dx'd with FM in March of '02 and having a dx on my lower back that began my downhill slide of mobility that same year; adjusting to this change in my life. It's tough. Probably one of the toughest challenges I've had to overcome and I haven't overcome it yet, but I'm workin' on it. And it's this board here that has been the biggest help to push me over that hurdle.

So check out that thread about the vitamin supplements. It's the very first thread on the board. It's a "sticky post" which means it stays in that place all the time, so it's easy to find. And I'm glad you are browsing through the other posts here.

Yes, people here are truly wonderful.

Here's wishing you a good spirit,
tk
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Old 06-09-2005, 06:38 PM   #4
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Re: Juvenile Primary Fibromyalgia Syndrome

Hi tk, sorry it took me a couple days to write back. I have to be on a computer at work most of the day and sometimes when I get home I just can't look at one for very long, and if I do anyway then I end up with a migraine.
I checked out the vitamin list you mentioned...that’s a lot of great information! My ultra mega supplement (that's the name - it's a multi vitamin but also has Ginseng, Echinacea and some other stuff) is by GNC and has a lot in it, but not everything...I will have to get more Amino Acids and some of the Malic Acid you mentioned! In addition I also take Cod Liver Oil with vit.D and Omega 3, extra vit.E, CoQ10, potassium/magnesium combo and Rhustoxidendron (sp? - a homeopathic pain reliever). My mom started giving me the Rhustox when I was in HS and my friend with RA and Lupus recently went to a homeopathic doc who told her to take the same thing. As for diet and vitamins it seems like a lot of what is good to do for Hypoglycemia is also good to do for FM which is good - it means I've been on the right track at least...
I also checked out the list. I could check off about 70 different things on there! That will be great for me to bring to a doc. appt. Thank you!
It sounds like you've come a long way since your dx, that is awesome for you! It's funny you mentioned houses not being as clean etc...I hate sweeping, vacuuming and washing dishes most - and we only have a small 1 bedroom apartment! Last weekend we had friends over and I decided I HAD to clean and did everything...then I was so tired and my lower back and hips hurt soo bad, so why we watched a movie my husband put the portable TENS unit that he borrowed from his school on me. Those things are great! I can't imagine if we had a whole big house to clean...
Well, I think I'm off the computer for the evening...be back soon!

 
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