Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
I'm new to this format, so please excuse any faux pas I might make.
I'm hoping that you'll let me hang out here. I don't have fibromyalgia, but my 10 year old son does. It is taking it's toll on us both. And my IRL friends are ignorant about FM but never cease to be full of (mostly ridiculous) advice. I need to talk with people that have this awful disease so that I can help my son.
Our back story, at the end of third grade, he ran a fever of 103 for 6 weeks. The only other symptom he had was hip pain. Only one hip.
Then, a few months later, he started with chest pain. We thought it was his asthma and kept throwing more asthma medications at him, but it wouldn't touch it.
A few months later, then hip pain came back adding to the continued chest pain.
The pediatrician thought it was RA and sent us to our local children's hospital who scratched their heads, said it wasn't RA, and sent us home.
We finally took our son to Rady Children's Hospital in San Diego. Our insurance won't pay, but we finally got some answer. Fibromyalgia with PFAPA. The diagnosis came almost 18 months after the symptoms started. It is now 8 months later and rather than it being better because we know what it is, he is worse.
He is missing too much school and too much life. He takes Elavil to help with sleep and gabapentin for the pain. Neither helps enough. At 10 years old, he only gets about 6 hours of sleep. That's not enough. Since the diagnosis, he's developed nausea (treated with Zofran), stomach pain, and some foot/ankle pain. But always, the chest and hips.
I'm hoping that you'll let me hang out here. I don't have fibromyalgia, but my 10 year old son does. It is taking it's toll on us both. And my IRL friends are ignorant about FM but never cease to be full of (mostly ridiculous) advice. I need to talk with people that have this awful disease so that I can help my son.
Our back story, at the end of third grade, he ran a fever of 103 for 6 weeks. The only other symptom he had was hip pain. Only one hip.
Then, a few months later, he started with chest pain. We thought it was his asthma and kept throwing more asthma medications at him, but it wouldn't touch it.
A few months later, then hip pain came back adding to the continued chest pain.
The pediatrician thought it was RA and sent us to our local children's hospital who scratched their heads, said it wasn't RA, and sent us home.
We finally took our son to Rady Children's Hospital in San Diego. Our insurance won't pay, but we finally got some answer. Fibromyalgia with PFAPA. The diagnosis came almost 18 months after the symptoms started. It is now 8 months later and rather than it being better because we know what it is, he is worse.
He is missing too much school and too much life. He takes Elavil to help with sleep and gabapentin for the pain. Neither helps enough. At 10 years old, he only gets about 6 hours of sleep. That's not enough. Since the diagnosis, he's developed nausea (treated with Zofran), stomach pain, and some foot/ankle pain. But always, the chest and hips.
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We're all troubled.WSo, to remind ourselves we're not at rock bottom (this is a reverse optimism thing I learned as a kid):We are not living on the island of Krakatoa when the volcano goes boom!Yeah, okay, that sucks.***Toay in 1942, Pierre Laval announced that the way to free France was for Germany to win WW2. Pierre did not win a lot of friends. When the war ended, quite quickly he was tried...
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Another day, another ouchie?My bruised achilles tendon (don't ask) makes my foot numb. Wonky on meds, whacked it.Now, as to fibro:A lot of reports are going around some parts of social media that fibro (and dang near anything else) are caused by post-Covid, post-flu, post-vaccinations, post-pick-something.1. Your risk of death or serious complications beyond "ow, that shot hurt!" are typically...
Thank you so much in advance.
Ty
Caleb's Mom
I agree with K8 about swimming. It is less painful on the joints. Please come here with any questions. you have. The people here are full of knowledge.
I think I would push for more testing to make sure he is correctly diagnosed. I know you don't want him to be a pin cushion, but just to make sure that all of his symptoms equal the correct diagnosis. He is just too young for this nonsense!
Good luck.
WHAT IS PFAPA?
This syndrome includes recurrent episodes of fever with aphthous stomatitis (mouth sores) and pharyngitis (sore throat with redness). Occasionally, there also may be exudate (white patches on the tonsils) and usually the lymph nodes in the neck are enlarged (adenitis). Episodes of fever start suddenly and last for 3-7 days. Fevers occur routinely every few weeks; often, families know the exact day when an episode will start. Some children have other symptoms like joint pain, abdominal pain, rash, headache, vomiting or diarrhea. Children are completely well between episodes.
The disease may last for several years but usually will resolve by itself in the second decade of life. However, in nearly 15 percent of patients episodes (although less frequent) may continue to occur during adulthood. Over time, the time between the episodes will increase. Children with PFAPA continue to grow and develop normally.
FAST FACTS
PFAPA is a syndrome that consists of recurrent episodes of fever, sore throat, mouth sores and swelling of the glands in the neck.
Use of steroids at the start of an episode can stop it, but also may shorten the time to the next episode.
PFAPA usually resolves spontaneously during the second decade of life.
Tonsillectomy may cure the disease.
WHO GETS IT?
The frequency of PFAPA is not known, but the disease appears to be more common than originally thought, and may be the most common recurrent fever syndrome that does not come from an infection. Both males and females and all ethnic groups can develop PFAPA. PFAPA usually starts in early childhood, between the ages of 2 to 5 years.
WHAT CAUSES PFAPA?
The answer to this question is not yet known. No gene defect has yet to be found in PFAPA, although sometimes more than one family member has the disease. No infection has been found in PFAPA, and it is not a contagious disease. It is clear that the inflammatory process is active during episodes, but it is not clear why this happens.
HOW IS PFAPA DIAGNOSED?
There are no laboratory tests specific for diagnosing PFAPA. The disease is diagnosed based on symptoms and physical examination. White blood cell counts, sedimentation rate and the C-reactive protein, all of which can be measured with a blood test, increase during attacks. It is important to exclude all other diseases that may present with similar symptoms (especially a Streptococcus infection) before confirming the diagnosis. The dramatic response to treatment also helps diagnose PFAPA. In cases without a classic presentation it may be necessary to exclude other causes of recurrent fever (see other patient sheets on this topic).
HOW IS PFAPA TREATED?
The aim of the treatment will be to control symptoms during the episodes of fever, to shorten the duration of the episodes, and to prevent episodes from occurring. The fever usually does not respond well to acetaminophen (Tylenol) or nonsteroidal anti-inflammatory drugs like ibuprofen (Advil or Motrin). A single dose of steroids (usually prednisone), given when the symptoms first start, has been shown to shortenand often even endthe episode. However, the time between episodes also may be shortened with this treatment, and the next episode may occur earlier than expected. Medications like cimetidine and colchicine, when used regularly, may prevent future episodes in about a third of the children. Several studies have found that a tonsillectomy (removing the tonsils by surgery) cures PFAPA in the majority of patients (more than 80%) but the role and timing of surgery in treating PFAPA has still not been fully clarified.
LIVING WITH THE ILLNESS
Episodes may affect the quality of life of the child and the family and result in many missed days of school. There is no danger to the long-term health of the child.
POINTS TO REMEMBER
PFAPA is a periodic fever syndrome that includes symptoms of pharyngitis, mouth sores and swelling of the neck glands.
Episodes usually end during the second decade of life.
Steroids given at the start of an episode usually end it, but the result may be more frequent episodes.
Removing the tonsils in children with many episodes may cure the disease.
Have you considered seeing a functional medicine specialist? This is an MD with a strong interest in holistic medicine. Many of them take insurance. I got some of the best help that I have had from a that type of doctor. They run blood work and other tests that are much more detailed than the average MD. You can find one in your area by using Google. Type in the name of your metro area and functional medicine specialist and see what pops up.
As far as medication goes, there are other alternatives but he is 10 and not an adult. Has anyone considered letting him try some different medication? A compound pharmacy could reformulate the med into a more appropriate dose for his age and size. There are compound pharmacies everywhere. If one is not convenient to your home, the script could be faxed in and the medication mailed to your home. The primary medications used to treat Fibromyalgia are Cymbalta, Lyrica and Savella.
Sleep is not a perfect science when it comes to medication and Fibromyalgia. Fibromyalgia (FMS) interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your body requires deep sleep in order to repair itself from the days activities. No deep sleep means higher levels of pain which rapidly becomes a vicious cycle. I'd suggest that you get a sleep study done to pinpoint the issue exactly. Then the right medication can be used to combat it. Good sleep hygiene is also critical. No TV or computer use at least an hour prior to bed, make sure his bedding is ultra comfortable, remove any source of light from the room. Many of us sleep with ear plugs and a mask.
I'd like to suggest that you purchase the book "Fibromyalgia for Dummies." You can find it online at Amazon. It will give you a comprehensive overview of this illness and a myriad of ways to manage it. You are going to have to be your sons own best advocate to get him the care that he needs. Knowledge is power. The more you understand about this nasty illness the faster you can evaluate whether a doctor is full of it or going to be helpful. You can also ask your family and close friends to take a look at the book too.
Have you tried acupuncture to alleviate some of his discomfort? It can be extremely helpful. I will say that initially, he may experience more discomfort and then things will start to turn around.
Arnica gel is a homeopathic muscle rub that I like and is pretty effective. It also helps with that bruised feeling that we sometimes get. You can purchase it at the Vitamin Shoppe. I'm sure it is also available for purchase online through Amazon.
Most of us are surgically attached to our heating pads and have more than one.
Salon Pas are little stick on patches for pain. You can find them at Walmart, Costco and the drug store. Many people really like them. They do have a menthol smell.
Tiger balm makes a larger stick on patch for painful areas. It really smells but is very effective. I purchase them through Amazon in bulk for the winter months.
Has anyone suggested Lidocaine patches or a topical Lidocaine rub to give him some relief? Personally, I don't like the patches as they are slimy and don't stay put. You need extra tape to get them to hold still. They may or may not go deep enough to helpful for a localized pain issue.
Epsom salt baths are pretty popular with FMS patients. It really seems to help ease up the soreness.
I like Calms Forte which is made by Hylands for sleep. It is a natural medication. It can be used for children. You can find it at the Vitamin Shoppe, CVS and online at Amazon. As I said before, sleep and FMS are not a perfect science even with medication. We all endure varying levels of fatigue on a daily basis. Get that sleep study done. And, I'd be after his doctors hammer and tongs to do a better job of pain control.
I agree with the others that some form of water therapy would be good. He needs to be in a heated pool. Can you get someone to write you a script for water PT? Make sure that the PT understands that your son is exhausted and in a lot of pain. Whatever they do should be at an extremely slow pace. I can't stress that enough. Ten minutes of water therapy is better than nothing.
Yoga,Tai Chi and meditation are also recommended for FMS. You could get a good beginners DVD and try it at home. Amazon has lots of choices.
Has he seen a pain management specialist? They can take things further than a rheumatologist. Mine was able to separate my FMS pain from other underlying issues and make better recommendations to manage everything.
I'm going to gently suggest that you consider getting some counseling for the whole family. The best type of counseling for this situation is Cognitive Behavioral Therapy or "CBT". It will give all of you tools to better cope with a diagnosis of chronic illness. Many of us see someone for extra support. Your son is on the cusp of puberty and must be overwhelmed in so many ways. He/you need all of the support you can get at this time. Call your local hospital and ask for the physician referral department. See if they can match you up with a counselor. Or use Google to find one in your area.
Does the Rady Children's Hospital have a support group for kids and parents with chronic pain issues? Perhaps your son could be matched up with another boy his age to talk via Skype (free if both users are on Skype). At his age, he needs the social outlet for sure. I assume he sees some friends from school but it isn't the same as talking to someone having the same sort of problems. If Rady doesn't have an option like that, maybe the hospital advocate could facilitate something.
As you can see, you really have to think outside of the box which is so hard to do with al of these problems confronting you at one time. I hope that some of my comments are helpful to you. Take care and God Bless.
Find a nutritionist who is familiar with FMS and hopefully PFAPA. They could be very helpful on a lot of fronts. Your son may have difficulty processing certain foods. They could be helpful on the nausea front. And, they can come up with a food plan that will help your son be more functional on a daily basis.
Malic Acid is a supplement which many FMS patients use to relax their muscles. It comes in a tablet. It helps with cramps and twitching too. It is a naturally occurring substance found in fruit. I have no idea what an appropriate dose would be for a 10 year old. You'd have to find a good health food store and get a recommendation from them. Make sure that you understand any risks that may be associated with using this supplement.
Take care.
On the pool, we are having a terrible time finding one. Our Y closed a few years ago, and the only other heated/indoor pools are at health clubs that won't let in kids under 13. So your comment about OT therapy has me intrigued. Can you explain more what it is so I might know where to look for it?
On the heating pad/patches, does it bring you all immediate relief or is it more like for an injury, where it might not feel better for a day or two? He claims the heat doesn't help much, but I'm not sure if he should see immediate help or long term. He takes a bath every morning before school because that helps with the pain, which is why I've been confused on the heating pad and why it doesn't seem to help. Of course, he's also just a 10 year old boy who may not want to bother with a heating pad.
I will look into the other things you all recommended. Thank you. Oh, and BTW, he does see a counselor.
He had an MRI of the chest and hips (also a plain xray of hips), colonoscopy to rule out inflammatory bowel disease, poop cultures of every make and model (ick), urinalysis, blood tests: ECR, anitheutrophil cytoplasmic antibodies, Lupus panel, ana, rheumatoid factor, sjogrens antibodies... well, there are four pages of blood tests, so I suspect they got them all. I even had him tested for lyme disease.
He's had other problems in the past (won't bore you with all those details) so he's also had three endoscopies with biopsy, several ekgs, two echocardiograms, and wore a halter monitor for 24 hours. (He has a heart defect that they swear is unrelated to the pain.)
So, did they miss something? Thanks in advance. You guys are awesome. I'm off to buy that book.
The thing to remember is that what works for one chronic pain patient may be ineffective for someone else. The longer a chronic pain cycle continues, the harder it becomes to manage or stop. That applies to taking new medication as well. It may be a couple of weeks before he begins to notice a difference in symptoms. It is a matter of trying just about everything you can think of and eventually you find a formula that works.
PT is physical therapy. If you get a script from the doctor for that than you should have access to a heated pool. It should be covered under your insurance plan. Many rehab centers have them. He could do some sort of aqua therapy for arthritics that has a very slow pace. In his instance, it would probably be better if he had a one on one session with a physical therapist. I doubt that he would enjoy being a in pool with a bunch of older folks.
Has he been tested for gluten intolerance? You should do both blood work and a stool sample. A biopsy may actually miss the part of the colon that is affected.
Vitamin D deficiency can also contribute to widespread pain. And, it is fairly common among people with FMS.
A hot bath would give him more relief because if is all encompassing and essentially deep heating. Try adding Epsom salts as I suggested too. He may not just be giving the heating pad a chance. I get that is not an acceptable fashion accessory for a 10 year boy. How about a heated throw instead? That would sort of replicate a hot bath and might work better for him.
I have a lamp that I purchased on Amazon with infrared heating. It has a mineral plate on it. All minerals vibrate at different frequencies when heated and have different healing properties. Most acupuncturists use these lamps in their offices. It really helps with some of my more painful areas. I have several underlying issues in addition to FMS. My only regret is that is not bigger.
If you decide to pursue the functional medicine specialist make sure you get copies of his medical records and tests that he's had done. It will save time and money.
Honestly, I'm appalled at everything you have had to go through so far as an individual and a family. The lists of tests made me pale. I honestly can not think of anything else other than going to a functional medicine specialist. They have a pretty keen insight into complicated health issues that no one else seems to be able to manage very well.
If there is anything else that we can do to help or you just need to vent - have at it. We've all been there to one degree or another. Take care.
Best wishes to your son . he deserves so much better of a life than what he's had so far!