Fibromyalgia Support Group

oh what kind of doctor do you see for fibromyalgia?

Hi,

I am so very sorry to hear that your precious son has this dreaded illness.

You didn't say what type of doctor you have seen. I would suggest a rheumatologist. Fibromyaglia is in the "relm" of rheumatic illnesses, although it is not an artric disease, so the medical field says.

Rheumatologists are the best place to start, see if there is prehaps a pediatric rheumatologist in your area.

My heart goes out to you and especially your son.

Gentle hugs.

Oh Hunny,

Welcome and I'm so sorry to hear that your son has this! A Rheumy will help. They usually make the diagnosis and rule out other conditions such as MS, Lupus, Arthritis.

Some here go to Pain Clinics...some see general Practitioners.

My suggestion is to really get to know your son's pain. Meaning, learning to read him. Most people with Fibro try to hang onto an active life. Try to hide their pain. Yet, you don't want to see him fall into a lifestyle of no activity either.

Get him swimming. It's great for Fibro suffers. We are weightless and gravity and the Barametic pressure (think storms) not working against us in the water. So we can move around fairly pain free. And keeping our muscle moving is a big benefit.

Flexeril is going to be a good med to start out on. He'll get sleepy with it.

Make sure he's getting enough sleep. Or good sleep when he can.

Read up on the meds such as Neurontin, Lyrica, Cymbalta, Amitryptiline, Nortriptyline, any other old school anti-depressants. KNOW HOW THEY WORK ON KIDS!!! Please! Some of these have suicide warnings.

Also, most importantly. Look into Bullying. I know darn well, those kids at school like to weed out the weak and abnormal. And I don't want to see your son become a target for bullying.
If necessary, sit down with the teacher, school nurse, lunch room attendants, and other staff in the school who may come in contact with him each day. Even Janitors! They see how kids are when the teachers have their backs to the kids!

(forgive me, I have two boys with Autism, and all kids with disabilities are easy targets)

One more thing, your life, if not already, is going to morph into a less busy schedule. Your son's body is going to demand it at times. But with the right kind of therapy (water therapy) / activity levels, meds, sleep, your son can lead a very normal life. He may not be able to "play sports"....but then again, he might surprise all of us. (I pray he does!)

I learned not too long ago, that the growth hormone is a big factor in how much pain we experience. Kids have it well into their 20s-30s. This is when we as adults say..."I just can't play that hard anymore, or I use to be able to do this or that without hurting". When the growth hormone stops producing, we start feeling "old".
Yet, synthetic growth hormones are still not safe, they are linked to cancer.

I hope some of this gives you a good place to start out. Keep hanging out here, the guys and girls have some great information and I wouldn't be where I am with out all of them. I hope your son can find some support here too.

Big welcome hugs!

Welcome to our group. Lots of nice people and good info. I think most people see a rheumotologist. The following are letters some use to educate their family and friends. Maybe you will find them helpful.

Sorry your son has this.

A letter to the Healthy World From
The Land of Chronic Pain and Fatigue*

WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

FMS is not the newest fad disease. In 1815, a surgeon at the University of Edinburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. However please remember, stress can affect the body, just as physical pain can affect the mind, causing stress and depression. If someone needs help in coping or dealing with depression, they should see a therapist or Psychiatrist, but it does not mean they are "crazy." It may help you to find methods of coping!

In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability. It is recognized as a disabling condition by the ARTHRITIS FOUNDATION, THE SOCIAL SECURITY ADMINISTRATION and the MAYO CLINIC, among others.

This syndrome may strike life-long athletes as viciously as it does couch potatoes. It can be disabling and depressing, interfering with even the simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME
(Keep in mind that these things may apply to some, not all of fibro patients)

My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is VERY real and very painful.

My fatigue - I am not merely tired, I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age (young people can get fibro) but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

My clumsiness - If I stomp on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So try to understand if I must decline certain invitations, or go home suddenly. I really can't stand it.

My intolerance - Perhaps I can't stand heat, either, or humidity. I may sweat, profusely. Some people cannot sweat at all and so the heat is even more unbearable! Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And, don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's "patients" suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression, but it is a result of the Fibro, not a cause of it. Some days I may just feel like giving up. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Every day stresses make my symptoms worse and can incapacitate me completely.

My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it. Often the medication I must take causes weight gain, but many of us with fibro suffer from severe Irritable Bowel Syndrome and lose weight.

My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is filled with painful knots. If I can stand the pain, regular massage can help, at least temporarily.

My good days - If you see me smiling and functioning normally, don't assume I am well. I am having a good day but I am not cured. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

My uniqueness - Even those who suffer from FMS are not alike. That means not every fibro sufferer may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

~~~~~~~~~~~~~~~~~~~~~~~
Authors' note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one individual of the over 10,000,000 people with FMS, it represents all of them. It hopefully can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes, or their bodies.

*There are many letters of this type to be found on the internet. This one was written specifically for THE FIBRO WELCOME PACKAGE by Micki and Rose.
If you would like a click and print version to share with others please go to
http://www.fibrowelcomepackage.com Send to a Friend Share This

The Dragon grins..

The doctor explains to me that I have a Dragon that has come to possess me. This Dragon is mean. This Dragon is deceiving and destructive. "But", the doctor says, "We can work at keeping this Dragon down."

"What is this Dragon's name?" I ask.

The doctor in his professional calmness says ,"The Dragon is FMS...Fibromyalgia Syndrome" The doctor explains to me ways we are going to keep him down. "Feed the Dragon some meds like Trazadone or Elavil. Do some light exercise , maybe the Dragon will get tired and leave you alone for a while."

I turn to leave and for the first time I see the Dragon. He looks at me with those evil yellow eyes, and the Dragon grins. I say to myself that Dragons can be slain. I read that in stories in school. The armor-clad knight slaying the Dragon and triumphantly returning to his town. As I am in this daydream the Dragon jumps on me. I wrestle with him. His hot breath sears my head. His roar makes my ears ring. He leaves me in a pile of flesh on the ground. I ache all over. Some parts of my body are painful to touch. I am exhausted as I pick myself back up again. The Dragon looks back to me-and the Dragon grins.

"I hate you, Dragon." I scream as he walks away. I feed the Dragon the medication prescribed. Slowly at first , then increasing a little as time goes by. I do begin a little exercise. I change some of my diet and increase the carbohydrates. I move about relatively pain free. And I say to myself "Maybe I have beaten the Dragon. Maybe the Dragon was only my imagination. I was just a little depressed and down, but now life is great."

I look to the sky and see dark clouds looming. A cold north wind begins to blow. I hear a thunderous pounding of foot steps. I have heard that sound while watching Jurassic Park, but now I'm not watching that movie. BOOM...BOOM...I don't see anything. BOOM...BOOM.. I panic and start to run. I don't know where to run ,but I run. The pounding gets closer and louder. I feel the hot breath on my neck. I dare not turn around as I try to run faster..faster. A claw grabs my shoulder. Searing hot pain rips down my back....staring upwards, terror runs through my body. And the Dragon grins.

The Dragon has returned! "You can't escape" the Dragon yells , "You are mine !!" I try to get up as the Dragon slams my body back to the ground. I can hardly stand the pain as he tortures me by stomping my hands. With his teeth he pulls at muscles in my back and legs. He burns my head with intense fiery breath. The battle is finally over. He stares at my crumpled body as I try to get focused on this beast. My eyes finally clear enough to see, and the Dragon grins.

Days pass. My fingers no longer work like they used to. My muscles feel like the second day of Olympic training, but the sensation does not leave. My head is not clear. I do not see well at night. Parts of me are cold and clammy. I am stiff. Why did the Dragon beat me so hard? When I try to sleep, the Dragon slaps me awake several times at night. Sometimes I am freezing. In bed I awaken drenched in sweat. It hurts to stand. It hurts to sit. My mind says one thing and my mouth says another. And the Dragon grins.

Sometimes I think I am in a nightmare and will someday wake up,the real me. I don't look sick, so why do I feel so bad? Friends and family laugh when I mess up on my words talking to them. I feel stupid looking in the refrigerator and not knowing why, or walking around in circles either not finding what I was after or forgetting what I was looking for. If I am driving at night and it starts to rain,the road disappears. And it is not uncommon to go somewhere and then make wrong turns coming back. My mind says right, my body turns left. I can go somewhere and not remember how I got there. I am not dumb, just not "connected" anymore.

Outwardly I laugh and play,but inside I have to cry sometimes.
And the Dragon grins.

The Dragons Grin was written by Ray White

Hugs

Hi Smile (are you a dentist?), welcome to our group. There are a lot of very nice people here who are full of great information, which has already been given.
The doctor that takes care of me is an Internist. Although I have access to a Rheumatoid doctor if I feel the need.
I'm actually quite surprised that your son's doctor didn't chalk his symptoms off to growing pains. Sounds like he has a good & caring doctor. I'm on Flexeril and Vicodin for pain. I only take the Vicodin if I really need it and the Flexeril seems to help a lot. And I use my heating pad. I must have every heating pad there is out there! My latest one I got at Walgreens I think, it circles the neck and shoulder and top of shoulders (not describing this very well). Sometimes I think I look like an Alien all suited up, but they help! It also might help your son to come here from time to time and read about some of the things Fibromyalgia sufferers go through, although some of the conversations have been known to turn to adult topics, so do so at your discretion!

Welcome to the group. I am so sorry your son is facing this, but with finding your sons balance, meaning what works best for him. Will really help him, be able to smile and laugh, and well just have fun.

I find we are all different, and not every thing works for everyone. I think this has been very frustrating for me at times.

You will find some really great people on this site, with great advice.
Please feel free to come on just to vent, when you need to.
I know I would be so lost with out this site, and all the great people here.

Sending you and your son, some caring thoughts.

Gentle hugs, Sherrall

Thank you all so much for the wonderful answers!. I thought he had an autoimmune disorder, so i bypassed the pediatrician and went straight to a rheumatologist. Sam 55 I am a dental technician, I make crowns :-) He is getting some relief from the flexeril. It is definately helping him sleep, we went to bed about 1 this morning and it is now noon and he is still crashed! It seems his symptoms are getting worse everyday. Hopefully today will be a good day! Thanks again to everyone for the response, it is difficult because I don't know what he is going through , i loved what you posted maryca! very helpful to me. Everyone iI hope you have a nice 4TH!

Hey Smile......your comment on how you don't know what he's going through.....here is a test. It may make you cry emotionally being the momma....

Take 5 clothes pins. The spring loaded kind. Place one on each of your fingers 1 knuckle (near your finger nails). Now wear that for as long as you can tolerate it. When you can't tolerate the pain anymore....and as you take them off...just remember, your son can not take off his clothespins...ever!
That will cover what he pain is like.

And the fatigue and not feeling well sensation.....just think about your son each time you get the flu. Where you are just so wore out and you have a hard time getting off the couch, the bed, etc...

This happens for days with us...or it can me momentarily.

Celebrate his 'feeling good' days! And comfort him on the not so good days.

He's lucky to have you a as a mom!!

I can not add to much other then I am soooooo sorry to hear your young son has to deal with this. Also your husband's heart issues. You have much stress to deal with it sounds like. welcome to DS.

take care gentle hugs

HI there!
I was diagnosed with all of the symptoms to make up fibro when I was around 11 or so, only that was nearly 30 years ago. No one understood, and my parents just thought I was lazy and lying about the pain that I was in. THANK YOU for listening to your son and getting him proper medical treatment.
I know that I felt better as a kid, and now, when I am most active. It's just getting up the energy to be active that is the hard part! I just finished participating in a 36 week study on Fibro and fitness. It was a non-drug study, and looked at how a specified fitness routine each week affected how our Fibro acted up over the 36 weeks of the study. You can find out more about it at Fibrofit.net. I personally have been a long time advocate of some sort of activity at least every other day to help with fibro. Water activity is good, as someone else mentioned, because it takes the weight of the world literally off of joints and muscles. I also do t'ai chi, as it is low-impact and helps with balance. My really "odd" thing is is that I lift weights: rather heavy ones. I have found that the endorphins released from that are huge natural pain killers, and the strength has been beneficial as well.
I would let him know that exercise is a good way to build energy and lessen the pain. He'll think you are nuts, but let him know that there are folks who know it for sure. Also, try giving the flexeril a bit earlier in the evening, so it kicks in earlier and he doesn't sleep so long the next day. If you can, get him on a strict schedule with it, and get him up at the same time as well. It won't do him any good to let him sleep all of the time; remind him that he needs to be able to function for school and someday for work, so he might as well practice now so it won't be so tough when school does start.
Also, one last thing-- get him off of sodas and processed foods. The less processed food he eats, the better he will feel.