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Questions and Confusion
5 Replies
MaryBell - January 9

I'm 17, and have been battling pain and various other symptoms since I was 4. When I was 5 the doctors diagnosed me with JRA, though i never agreed with this diagnosis, as many of my symptoms don't fit, nor do i have many of the symptoms associated with it. I stopped seeing doctors for this disorder when I was 6. They'd prescribed me naproxen, which only made my nausea worse and never truly helped the pain. I never tested positive for JRA with any of the tests that were given, basically it was a cop out diagnosis, given when they couldn't figure out what was the cause.

The pain comes and goes, or at least changes in severity. From 4-6 it was the worse, the pain so debilitating that i couldn't stand. I'd get out of bed and just crumble, crying until my mom would come and pick me up. On the days that my body didn't refuse to function, I'd have headaches so painful that I couldn't see, hear, or think. Just stars and ringing.

One day i just decided that i wasn't going to let the pain control my life. I took myself off the meds, made myself start exercising, made myself pretend that i didn't hurt and that everything was ok. Slowly it got better. Pain never went awat but it flowed into the background for a few years. Got to the point that i hardly noticed it except for when it rained or the weather changed. I've always been able to predict the weather by how my body feels. I'm usually more accurate then the weather man xD. When I had my first period at 13, the pain started coming back more and more. Even now I can't move the first 2-3 days of my period, i have just curl up in a ball and make myself sleep if at all possible.

When the pain came back in full force, it brought along a series of new symptoms that i either didn't have or wasn't aware of when I was younger. One of the main ones is the dizzy spells. It seems to be mainly when I move around after being stationary for a while, it can also be triggered by a switch in light. Like if i walk in front of a window after sitting in a dark room. It's like a black sheet is brought over my vision and the world shifts. All i do anymore is sleep. I'll get out of bed at 1pm, go to work at 3 for 6 hours, come home and pass out for another 15 before I get up and go to school. I refuse to take morning classes, as it's a total waste. If I force myself to get up the pain is just that much worse, which kills my concentration, and makes the effort completely useless. I always feel off balance, like if I close my eyes I can't stand up straight no matter what I do, I just sway until I fall of move. My muscles tingle, thats the best way I can describe it, almost like my skin is constantly crawling, specially along my arms and legs, if I don't tingle Itch, though thats usually centered on my back. I feel weak all the time, which is probably the thing that bothers me most, no matter what I do, the littlest bit of physical exertion has me panting and sore for weeks.

The pain always moves, but my back is always the worst. There are always knots right at the base of skull and in two lines running along my spine towards the center of my back. Just running your fingers over them you can feel the muscle roll and pop. My legs are almost as bad, it's like the constant use is making them deteriorate. I don't even walk correctly anymore as I've damaged the tendons in my ankle so many times, weight is always centered on the outside edge of my right foot. My knees lock if I stand for to long, flat out refusing to bend until I sit down and rub some of the knots away. It's like a bow of rice crispys, if my ankles or knees aren't popping then my hips are catching on every step with audible complaint. Oh and the migraines, oh my god the migraines. They last for days at a time, make it hard to think or hear as my ears are popping the entire time and my eyes pulse as if threatening to explode. Then my jaw joins in, locking and popping to add the searing pains of complaint within my skull.

I haven't been to a doctor in years, as they never seemed to have much to offer. I have no idea if I have fibro, though a number of the symptoms fit. I do however know that something is very very wrong with me. I've tried a number of meds, though the only one that has ever helped at all is flexeril, if only because it gives me the escape of sleep. If anyone has any insight, or information to offer, I'd greatly appreciate it.


Stacey373 - January 10

Hi MaryBell - First off, you NEED to get to a doctor! Some of your symptoms, I'm not too sure what it could be (might be Fibro, but it might be something more serious) So the most important thing for you to do ASAP is make an appointment to see your regular doctor and ask for a referral to see a specialist. A rheumatologist is the best doctor you should see for Fibromyalgia.

Some of the things you are dealing with I can help you sounds to me like you have TMJ. To me, that's such a "minor" diagnosis when you compare it to having MAJOR and SEVERE headaches and pain. But I have learned that TMJ can be severe and it can cause extreme pain in the jaw, temples, neck, shoulders, and even down your arms.

You need to see the dentist for this. He can make a mouth splint for you to wear when you sleep and it should help you. I tried wearing one of these and it actually made me worse because I spent the entire night subconsciously trying to get it out of my mouth, so then I would wake up with my jaw feeling worse and my head hurting. I've been "training" myself not to clinch my mouth down when I'm stressed or nervous or concentrating on something and I'm constantly rubbing my neck and jaw and head to relieve some of the tension.

As for the knots, that is called Myofacial pain syndrome. massage therapy would help you with this and the muscle relaxers you said you were taking help too.

I hope I've helped you a little to understand what is going on with at least part of your symptoms. You can check out the blue boxes on the left side of this page and read about TMJ and MPS or research them on the web to get a better understanding of these things. But I strongly suggest that you get to a doctor and tell him EVERYTHING you are dealing with ASAP.

Good luck and let me know how you are doing and what the doctor says....Stacey :o)


kvc33 - January 10

When you say that dizziness is sometimes triggered by a change in your exposure to light I think that it is a symptom of migraine as migraines can be triggered that way and cause visual disturbances like you describe. I'm not sure what you mean by saying that you have damaged the tendons in your ankle but you should get orthotics or special shoes so that you are standing correctly and walking properly. This could be part of the reason you are having all over body pain. Where is the pain when you have your period? I have to take a prescription medication for cramps otherwise it's like being in labour for me, I even have the desire to push. You really do need to get to a doctor and get a proper diagnosis. This is important not only for your health but you may get to the point one day where working is out of the question for you and you may need to apply for disability benefits. Don't do what I did and work a few hours a week for ten years and live in poverty when I should have been on disability. You will need proof and documentation of your health problems. I'm so sorry that you have had the life you have had so far. Do you get much support from family?


MaryBell - January 11

Thank you guys for taking the time to read and reply to my post.

Stacey - I live in a small town and the dictors around here just send you into a horrible cycle. The last time I went to my doctor he sent me to a diagnostic specialist, who then sent me to an allergist, who then sent me a to a psychologist(who btw said it was in no way a mental disorder), who then sent me back to the diagnostic doctor, who then sent me back to the psychologist, at which point I gave up and decided to deal. At this point I don't have health insurance, which is another huge deterrent to going to the doctor, though that should be fixed within a month to two (hopefully).

I actually was told that I had TMJ when I was something like 12, though that start long after the all over body pain and headaches, so I'd assumed that was a different issue entirely. Granted all my dentist advised in the way to TMJ was not to chew gum, again yay for small town health care!

As for the knots, the muscle relaxants do help the pain, but they also make me pass out. Would my body adapt to them if I took them on a regular basis as opposed to the escape that i use them as now? As for massages, i have a very very hard time sitting through a massage as they generally hurt like hell. Would that bring enough relief to make it worth it?

Thank you again for taking the time out to read and reply, I'll od my best to get to a doctor ASAP. Sorry for my long winded posts.

kvc - in reference to my ankles, I'm one of those very stupid people who ignore pain, which always leads to injuries as i like to be active, and refuse to let pain interfere with my life. I love to run, always have, it's something I've tried to continue, with less success recently, but still something I at least try. That combined with half a year of martial arts(at my dads insistence), as cause me to "pop the tendon" in my right ankle 4 times. That what my mom keeps saying I do anyway, i don't honesty know as I never go to a doctor and haven't had it looked at. Basically its always swollen, pops 5 times whenever i rotate it, and just generally looks malformed. Fun right? All over body pain started long long before the issue with my ankle, I'm sure it doesn't help, and might facilitate it, but it isn't the root cause, just another side effect. As for my period, it's just insane cramping, radiates out from my stomach, throughout my back and down my legs. It's not rare for me to spend the first two days curled up in the bathroom throwing up from the intensity. I've tried every over the counter med i can get my hand on for it, nothings even touched it. :/

My mom is a nurse and she's always supported, she's gotten an increasing number of patients with the diagnosis of fibro whose symptoms remind her of me, which is why I started looking it up and eventually found this site. My dads never really believed me and seem to think I'm faking or making up the severity of it, but thats ok as i have my own personal issues with how he lives his life, and I know what I feel.

Thanks again guys for your responses, it does help.


kvc33 - January 11

Marybell, I take Ponstan for menstrual cramps and pain in the legs like you describe. It's drug name is mefenamic acid. It is only available through a compounding pharmacy here in Canada now. It works like a charm and nothing else helps, certainly nothing from the drug store. Ask a doctor about it. I hope you didn't think that I thought all of your pain came from your ankle problem, I just thought that it might be one of the easier symptoms to address. Please don't ignore your pain to the point where you do things that harm your body or make it worse. Light exercise is fine and perhaps a very gentle massage. Does it hurt if someone just touches you? I understand your frustration with doctors, your case has me stumped and I usually have something worthwhile to share. Have you tried removing common allergic foods from your diet? They are dairy, eggs, peanuts, grains except rice, soy, and sugar. Caffeine and artificial sweeteners are also bad for fibro people. It might make a difference.


Fantod - January 11

MaryBell - You need to see a rheumotologist,a neurologist, a gynecologist and an orthopedic surgeon to sort out what exactly is wrong. Call your local hospital and ask for the physician referral service. See if they can match you up with someone as soon as you have insurance.

You may have Fibromyalgia (FMS). You can also go to the National Fibromyalgia Association website and look at a list of fibro-friendly doctors in your area. If that means that you have so travel, so be it. I would rate your current quality of life right next door to dismal. As a someone with chronic illness, you have to be your own best advocate for care. You have taken a good first step by coming here.

I also agree that you have a raging case of TMJ. I've had it since the 80's and it can cause a host of problems. Your headaches, balance problems and the knotted muscles (trigger points) in your upper back can probably all be attributed to TMJ. You need to find a very knowledgeable dentist who can make you a custom bite splint. The splint is worn at night and will protect your teeth from clenching and grinding. It will also relax your jaw.

A key point to remember is that any of these problems are not going to be resolved overnight. The longer a chronic pain cycle continues, the harder it becomes to manage or stop. Once you are on a regimen of medication, it will probably take at least a month before you notice any difference. And, it may take longer as it is common to need adjustments and even different meds to alleviate the problem. There is no set formula for treating FMS. It can take a lot of tinkering to find the best combination of meds for each individual.

The sensation you describe as bugs crawling on your skin is called "Formication." Many people with Fibromyalgia (FMS) have this or electrical charge sensations. This problem is usually related to nerve pain and can be treated with a medication like Gabapentin.

By the way, Fibromyalgia is recognised by the World Health Organization, the Centers for Disease Control and the National Fibromyalgia Foundation. You can go on Amazon and purchase "Fibromyalgia for Dummmies." Like all of the dummies series it has good basic information. If it turns out that you do have FMS, buy a copy, read it yourself and pass it around to family and friends.

You have done yourself no favors by letting all of these problems fester. The sooner you get into to see some specialists the better. Good luck to you and take care.



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