Fibromyalgia and Myofascial pain sympton questions.

[LLong]

Hopefully I can make this coherent.

How common is fibromyalgia in children?

Since about 9 or 10 I’ve had fibro like symptons… fatigue, joints hurt nonstop, especially in my upper back/neck, and headaches. I remember I had a couple of tick bites from being at the barn non stop, so they tested for lymes. I believe I was in 5th/6th grade. The lymes test came back positive so they treated w/Doxycycline (If i remember correctly). However this didn’t seem to fix the problem. While it was bearable usually, my Mom found it odd that her seemingly healthy active child was in so much pain. So she encouraged me to go to lots of specialist. While stuff like acupuncture felt good… it didn’t give any long term relief. One GP told me he guessed it was from riding and made me stop riding or doing any high impact sports for 3 months… this made things worse,and I never went back to that Dr.

When I was about 16 the rheumatologist told me he believed I had either myofascial pain syndrome or chronic fatigue syndrom. He explained both to me, and told me besides a good sleep schedule and low impact exercise there wasn’t much to do.

So fast forward to two years ago (24 yo) I began taking cymbalta for whatever I have, just to see if it works. It helps. I also take adderall when I’m having really bad fatigue. I know adderall shouldn’t be used for the fibro symptons but it helps during and after flares. I had my doctor re test for lymes and it came back negative. I’ve always felt like it was a weird coincidence that that is around the time I can remember having symptons and they never went away. I also had a sleep study done, which came back normal.

I feel a little lost. I feel like all the GP I’ve seen are pretty clueless about my symptoms (but otherwise my current GP is decent). Any advice on who I could seek out next, or what you all would try next?

All I know is the rhuematolagist was right about a good sleep schedule and light exercise being the key to feeling good (or atleast not horrible). Does anyone know whether a rhuematologist would be the best person to go see?

At 26 I just feel like I’m too young (just like I felt like I was too young when I was 10) to live with constant pain, and I become cranky and not my normal self during bad flare ups.

Any thoughts or advice or ideas would be appreciated. I’m reluctant to dive back into this, because when I was younger it seemed like every specialist had some (usually wrong) diagnosis. I’d rather have a doctor go, well shit i don’t know…then just make up some diagnosis so he feels like he did his job.

[draftdriver]

“I’d rather have a doctor go, well shit i don’t know…then just make up some diagnosis so he feels like he did his job.”

I’ve got to agree with you there.

I’d give the rheumatologist a try since she seemed to be on the right track about the sleep.

(((Hugs))))

[downen]

You might want to have a full workup by an endocrinologist. Thyroid issues can cause symptoms that mimic Fibromyalgia and they definitely cause fatigue. Make sure they do a Free T3 and Free T4, and not just TSH, which doesn’t give a clear picture in many cases. If you are found to be Hypo, make sure they test you for Hashimoto’s (autoimmune) as it sometimes responds differently to medication than oridinary hypothyroid.

[red_mares]

[QUOTE=LLong;5875120]
I feel a little lost. I feel like all the GP I’ve seen are pretty clueless about my symptoms (but otherwise my current GP is decent).

I’d rather have a doctor go, well shit i don’t know…then just make up some diagnosis so he feels like he did his job.[/QUOTE]

Boy, are you wise beyond your years. It just sucks to hurt all the time. IME GPs are great as long as you stay healthy, otherwise they are pretty useless.

I’ve just got the myofascial part, not the fibro. I have a pain management/physical medicine doc. Trigger point injections and regular deep tissue massages help quite a bit, but they don’t “cure” it. It makes me feel a bit like a lush sometimes, but one of the best things I’ve found for bad nights is alcohol. A glass of wine does wonders for angry triggers; I don’t take many meds though, just NSAIDs and muscle relaxers, as needed. Nothing heavy duty.

[3DogNight]

I’ve had five spinal fusions in 9 years, and between the first and second surgery, I was also diagnosed with fibromyalgia. I went to a rheumatologist after a recommendation from my ortho surgeon, as my symptoms didn’t seem in line with the back problems. She ran a number of tests to rule out things like thyroid issues, chronic fatigue syndrome, etc. She also said that there is no specific test for fibro. They just test for everything else, and if all that comes back negative, you get a diagnosis of fibro.

Currently I take Celebrex, Mobic and Lyrica for the fibro, and Oxycontin, Percocet, Valium and Trazadone for the chronic pain from my back issues. The combo works pretty well for both problems, although I do still get flares occasionally. I actually went to the Cleveland Clinic before my rheumatologist diagnosed me and they were basically clueless. Drove 5 hours to spend four hours talking with a doctor, who then told me to go home and see a shrink. Very disappointing. Finding a doctor you can trust is the most important thing you can do, even if it means potentially going out of state. Living in chronic pain is not fun, and eventually you come to a point where you will take help anywhere you can get it. I tried the acupuncture, but it didn’t work for me. Meds seem to help the most. Good luck, I hope you find someone who can work with you to get you on the right combo of meds/treatments.

[Penthilisea]

There are many theories of how fibro is acquired, but two theories involve a viral infection and accumulative head/neck trauma. If perchance you rode when you were younger, and took any falls, its entirely possible to exhibit signs of fibro from early in life.

[LLong]

[QUOTE=Penthilisea;5893262]
There are many theories of how fibro is acquired, but two theories involve a viral infection and accumulative head/neck trauma. If perchance you rode when you were younger, and took any falls, its entirely possible to exhibit signs of fibro from early in life.[/QUOTE]

haha… yes I had 3 minor concussions one year (around the age of 9) thanks to a naughty pony. And then I guess the other possibility is that i acquired it during the lymes disease phase.

My boyfriend mentioned that also… that a lot of things like fibro lay dormant until there is some sort of infection or trauma.

I think I’ll research good rhuematologist in the area, and book an appt today (it can’t hurt).

[cc2132]

I was diagnosed when I was 13 after a couple of really bad falls - even though I had ‘healed’ my parents couldn’t understand why I was in constant pain.

Fast forward a million doctors visits later and my chiropractor (also my riding coach at the time) said “I think its fibromyalgia”

Sure enough, diagnoses came back - fibromyalia, chronic fatigue, IBS, hypermobility and the beginnings of arthritis. To an active 13 yr old - this was a death sentence.

Nothing worked - I spent the next 7 years getting every treatment possible, giving up on my dreams with horses, being tired, mocked by ‘friends’ for being a wuss and then - I said screw it.

When I was 20, depressed and hating everything in my life, I switched schools and moved home with my parents. My family doctor said “We are beating this, what is the one thing you wanted to do with your life that this is stopping you from doing, other then horses?”

The army. I joined when I was twenty. I started exercising non stop. I went through a year of pure pain and exhaustion. My first time around in boot camp was an utter failure - I was so unfit and exhausted all the time that I injured myself constantly, ending up kicked off my course with a broken leg and dislocated knee.

So I trained harder. 5 years later I’m a Captain deployed overseas. I train twice a day, run 4-5 times a week, play soccer, hockey, volleyball and I’m trying rugby. I’m going to make horses my career.

I know I sound like a self help motivator - its because I’ve actually done that. I just made lifestyle changes - I stopped eating meat, I recognized that when I ate processed junk, I would have flare ups. If I leave off working out for even 3 days my joints start to ache.

Its not easy. I’ve seen people beat it, and I’ve seen people not. I’m only a year younger then you though, and I managed to kick it in the butt, and so can you. I don’t take any medications, I don’t see any therapists - my therapy is the gym (and I started with a personal trainer) and a healthy kitchen.

[LLong]

cc2132- Thanks that is motivating. I’ve pretty much been living the life I would live otherwise, besides occasionally acting like an old lady about staying up late/sitting around too much (my back can’t take it when I sit for too long), and other things I know are going to piss my body off for days.

What made you decide to give up meat? I’ve been watching my diet recently and trying to see if there are any correlations with food and I haven’t been able to find any.

I went to the rheumatologist yesterday. She ordered up some blood work(that’s probably been checked a million times) but she agrees that it is fibro, and said my current management program seems to be good, and I seem to have learned to cope with it well. She suggested some sort of sleep aid, but didn’t prescribe one, I’m going back at the end of the month.

[atr]

Do any of you have asthma? And are you on any medications for it?

I ask because I’ve just had a wierd experience with Singulair. I started taking it regularly about 9 months ago, along with a couple of other things. The cocktail appeared to do wonders for my asthma symptoms.

But, looking back on the time now, I spent most of it in pain, with aching joints, sore muscles, exhausted, depressed and irritable. I had a fall and hurt my knee and it was far more painful for far longer than it should have been. Some days I jsut didn’t want to get up of the sofa. This is not like me.

I had to stop taking the singulair for a few days prior to some breathing tests a month ago. Quite suddenly, my husband turned back from an irritating SOB into a charming human being again. I’ve been able to ride without hurting. I’ve stopped taking three ibuprofin every night to deal with the pain and get some sleep. I’ve got my energy back. My knee has improved hugely.

And my asthma symptoms are no worse without it than with it.

[cc2132]

LLong - Not to sound like a huge hippie (because I’m not) but 2 years ago meat just became unappealing. I was walking my dog out by my neighbours cows and I could literally visualize the slabs of meat falling off these animals. At that moment, I went from a meat lover’s pizza type of person who liked her steaks rare and still mooing to not being able to stomach the thought of meat.

I researched in it, assumed it would be a short lived phase but then i decided (okay maybe a little bit of a hippie) that I would listen to what my body was telling me. It did not want to eat meat. I had still been having issues with my health up to that point, but they disappeared overnight. I think it has a lot to do with what is put in our meat that we eat. My SO stopped eating a great deal of meat when he met me, and while he was deployed with me, he ate barely any. He dropped 30 lbs (he wasn’t a large guy to begin with) he started running, and he says he overall health has improved tenfold.

I eat chicken here because the options are limited. When we go back I don’t know if I will continue you, but I still eat fish. I ate a steak one night because the Outback Steakhouse flew in and cooked us an amazing meal and a day later I was in the hospital with a major kidney infection and almost sent home - they are related anywhere but in my head, but in my head, meat = sick. When I buy meat for the SO, it all comes from a local butcher and if we continue to eat chicken we’ll look into getting our own meat chicken.

I feel you are 100% what you eat. If you eat something that is pumped through of chemicals and hormones(both natural and synthetic) it will cause problems. When I was 15 a doctor told me this - I wish I had listened

[summerhorse]

I remember having fibro symptoms since I was a kid but I also had psioratic (sp?) arthritis/Rheum. arthritis issues too so not sure what was what. When I really noticed the fibro start was when I was about a sophomore in college and it just got worse over time. But when talking to other sufferers I have noticed a lot of them also recall symptoms from childhood. And oddly enough we were all told we had “growing pains”.

THERE IS NO SUCH THING AS GROWING PAINS! Barring a few rare conditions it does not hurt to grow. It hurts because something is wrong.

[PalominoMorgan]

From someone who spent years with chronic pain and fatigue and eventually got the fibro diagnosis I am going to give you a link. Read it, if any of it seems to ring a bell, feel free to ask me questions. I offer the info because it often applies to athletic, motivated people and fibro is a common misdiagnosis (or a co-morbid diagnosis.) So, here ya go http://www.ednf.org/images/stories/leaflets/soyouthinkyoumighthaveeds.pdf

[Tommyknockers]

Have you tried the drug Savella???. Worked for me. Good luck.

[LLong]

[QUOTE=PalominoMorgan;5958332]
From someone who spent years with chronic pain and fatigue and eventually got the fibro diagnosis I am going to give you a link. Read it, if any of it seems to ring a bell, feel free to ask me questions. I offer the info because it often applies to athletic, motivated people and fibro is a common misdiagnosis (or a co-morbid diagnosis.) So, here ya go http://www.ednf.org/images/stories/leaflets/soyouthinkyoumighthaveeds.pdf[/QUOTE]

I don’t think this fits my symptons. Some ring a bell, but most don’t.

@Tommyknockers;5958466

Have you tried the drug Savella???. Worked for me. Good luck.

No, just cymbalta. I’ve heard good things about savella and lyrica. I just get nervous switching drugs and dealing with new side effects, cymbalta made me nauseous for the first month or two even when I took it with meals (and made me gain 12lbs, I know it’s not suppose to make you gain weight, but I really think it did!)

I went to the rheumatologist. She said it definitely sounds like fibro, but it also sounds like I’ve learned to function and pretty much make the best of it through out the years. She ordered up some blood tests to rule out other things (which has already been done, but oh well, it can’t hurt) and then I’m going back to see her at the end of the month. She said she’ll probably prescribe some sleeping meds, that it was really important to make sure I get good uninterrupted sleep.

I’m also going to talk to my GP when I get my blood work done, I’ve been having ridiculous headaches every day for the last week and a half. I think it might be sinus headaches and unrelated to fibro. It’s always hard to tell, everything just blurs together, but I;ve been having congestion in the morning so that points to sinus to me.

[Tommyknockers]

Give the savella a try. The lyrica worked BUT I gained 30 lbs in like a month!. The savella I did not notice any side effects.

[PalominoMorgan]

I had no luck with Lyrica, but what works pretty well for me is amitryiptyline. It helps with the migraines, keeps the fibro flares at bay, and helped with the autonomic dysfuction before it got REALLY bad. Sometimes the old school drugs still have something on the new ones.

[sadlmakr]

I have had fibro symptoms since I was 11 years old. I am 64 and have had pain and suffering all my life. I have gone to so many Dr.s I can not count them all. I was told it was in my head so I could get attention. I needed to see a shrink.
So I had to live with it.
I have been living on pain killers for years. I have had so much blood work done and all is “Normal”.
When these Dr.s can’t find anything that fits in their book of diseases then it doesn’t exist. I do not ride anymore although I would love to. It just hurts to much to do it.
I am not impressed with American Medical practices. Even when I was covered with great health insurance to pay them I got the same answers from them.
“You do not really hurt like you think you do. It is not real. You are just imagining it. " You are just lazy and want to get out of work”. You are just looking for attention".
No one does this kind of hurting to get attention.
I have just resigned myself to living with the pain until I pass.
I do hope you get some help and get relief.
Keep on them until they do something for you.
sadlmakr

[beaujolais]

Oh, you poor thing so, so sorry.

Life long fibro sufferer here.

Severe growing pains as a young child (that I was always at the Drs. for). I remember it being excruciating. Fibro kicked in at 16 or 17 and it’s been a nightmare since. Migraines, too.

Half of an Ultram (“non-addictive” codeine substitute) and two tylenol for pain help me. Cymbalta is pretty good. Lyrica was terrible - forget that. Ultram is a life saver.

The massage therapist is wonderful and the chiropractor helps.

Adderall - interesting. Forget the “shouldn’t be used for” - you are the one who has to suffer and if it works, that is great.

Right now I take Topomax (headache & general pain reduction) & Wellbutrin (for energy) as I did Cymbalta for a good bunch of years and my GP thought it was time to switch up.

Yahoo Groups has a pretty good fibro group that you can join and they send their “digest” every day. There are some great ideas on it, sometimes. http://health.groups.yahoo.com/group/Fibromyalgia_Support_Group/ Sign up for the “digest” instead of the individual forwarded posts so you don’t get a zillion e-mails a day.

Big soft hugs,
Sonoma

[Derby_Lyn_Farms]

I had what was called growing pains when I was little. Severe joint pain, headaches, and just sore all over. I was always very active and I think this helped.

A few years ago I broke my leg and I was down for 4 months. After that I wasn’t as active. Couldn’t run everyday like I use to. Just never got back into shape again. Last year was my worst year. I could ride a horse one day, and be down for the rest of the week. Over the winter I was diagnosed with fibromyalgia and sjogrens, along with some other auto immune disease. My ANA test comes back abnormal, but when tested for lupus or RA its negative. I get the butterfly rash once in a while. I’ve had chronic mono which is linked to lupus.

I am now on hydroxychloroquine for the pain. It seems to take away the everyday aches and pains. But I still ache when its cold or damp out. Pain killers don’t do it for me. Vicodin works the best but I try to stay away from that. I just broke my arm recently and they gave me ultram which made my heart race. Also gave me naproxen which does not help.

GO SEE A RHUEMATOLOGIST. My family doctors thought I was a crazy drug seeker. And I never once asked for drugs, I asked for blood tests.

I have IBS, chronic fatigue bad, dry mouth, dry eyes, asthma, and constant headaches. Lately (knock on wood) since I have been on the hydroxychloroquine I have not been getting the daily headaches. I was taking atleast 800 mg motrin a day, but stopped doing that about after 3 months being on the hydroxy. I also take trazadone to help me sleep at night. I fall asleep fine, but my arms and legs start tingling and aching and wake me up.