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So confused…need help.
9 Replies
PianoPlayer - November 1

I’m 15, and I posted something earlier about it maybe being RSI.

I have had chronic pain in my wrist since I was about 13 then over about two years it has spread to my whole arm, then left wrist, shoulder then upper back neck and then lower back. At the moment I am so confused I don’t know if it is Fibromyalgia and since I am 15 my mum has to be at my docs apps, the practice doesn’t like it otherwise and my mother is sometimes under the assumption that it is all in my head and after reading about Fibromyalgia and me mentioning it she thinks that I am making my symptoms fit. I am going crazy I keep doubting my pain as it is not always there and not always really bad and then there are days when I can’t bend down or move my arm, sometimes I think that it all in my head as my mum has told me before. I have no proof with this no blood tests, x-rays or MRI’s show that anything is wrong and painkillers don’t work, not even co-coda mol 30/500mg and even morphine only takes the edge off. All the docs do at the moment is send me on my way with painkillers and give me apps to other docs who then send me to other docs that tell me they don’t know what it is and label it RSI. They did sent me to physo but I was in so much pain after it, my back felt like an elephant had danced on it and I haven’t been back since because of my recent op.

My pain isn’t always crippling and my tiredness doesn’t always put me flat on my back but I honestly cannot remember a day where I have not been in some type of pain. I am also recovering from my second op to remove a pilonidal so I expect to be tired from that but after going to school for a full day once (I only do two hours now- due to the nurses restriction) I was in so much pain and I was so tired.

I guess I am just venting but I truly do not know what to do as my mother doesn’t believe that I hurt most of the time and just tells me to stop whining and to stop being a wimp.

I’m not even completely sure that I have Fibromyalgia but it fits, the pain and the constant tiredness and I guess I am worried that if I get the chance bring it up to my doc, he will either look at me as though I am insane or he will do tests to rule it out and I will be back to square one.

Sorry for the long vent but thanks for reading.

 

ptalana - November 1

Hi Pianoplayer,
First let me say how sorry I am that you are being so challenged not only with the actual pain, but also the uncertainty of what you truly are facing. I hope and pray that you get a diagnosis soon whether it's fms or some other chronic condition.
I hope you have some sort of support at home, I know that you mentioned you're not getting support from your mom (I'm so sorry for that). Please feel free to lean on us, we're all here to listen and advise you whenever you need us. Please don't get discouraged no matter what is said to you, be strong. You are not a wimp!!!! Sometimes it's hard for others to understand this kind of pain, heck it's hard at times for us to understand.
While there is no actual test for fms, rather they will eliminate other conditions that will fit the symptoms you are experiencing. Remember be a strong advocate for yourself, with your doctor and your family. I wish you good luck and a speedy diagnosis. Please keep in touch and let us know how things are going, you're not alone!!!
Keep strong, Patty

 

solanadelfina - November 2

No apologies needed- we've all been there. And that's what we're here for now, to help each other.

My fibro started off exactly the same way. I had pain in my wrists that took years to spread over my body. No one knew what it was for a long time. Our symptoms are real, and fibromyalgia is a real condition that is recognized in the medical community. Some days we feel much better than others, or we have more pain. That's normal.

Usually a rheumatologist is the one to go see for a diagnosis. Internists can also be helpful. You can ask the clinic for a referral to one. It can be scary, but it's very important to speak up and say exactly what you feel like. Doctors need to know, so they can figure out what's going on.

Some of us keep diaries of symptoms to help watch for patterns. If there's anything else going on that seems weird, even if it seems unrelated, write that down too. Do you hurt after certain activities or certain times of the day? You can also ask the clinic for copies of all the tests that you've had already to bring along. All of that will help a rheumatologist to figure it out.

In the meantime, I feel better by taking hot baths with yummy salts and also do gentle stretching. It can hurt a bit at first, but it feels nice to loosen the muscles. Just make sure to listen to your body when it tells you to stop.

We're here for you with any question or ranting needs. :) You've already shown you're strong by coming here and looking for information and taking charge. Keep us posted.

 

bwelladjusted - November 2

The only thing more difficult than being in pain all the time, is having your own family doubt you. I was about the same age as you when I first began to notice some symptoms, and I was diagnosed with fibro at 18. My family really has been very supportive...but at first my mom thought I was exagerating a bit. It's also hard when you're trying to honestly explain to the doctor how you feel, and a parent is sitting there jumping in with "oh, you don't usually have that" or "you weren't in pain that long ago!" The doctor's tend to discredit what you have to say when they hear that. Try to sit down and talk to you mom. Explain to her that you don't want to have fibro...in fact, it's the last thing in the world you want, but that you really need to know what's wrong so you can stop wondering. Be open to any other ideas you find, so she sees that you're not just wanting a certain diagnosis. Try keeping a journal...I did that for over a month before my diagnosis. I kept track every few hours of how I was specifically feeling, what I had eaten, my activities for the day, what the weather was like, how much sleep I had gotten the night before,where I was in my cycle, etc. At the bottom of the page I would rank my pain and energy levels separately on a scale of 1-10. Take the journal with you to your next doctor's appointment, and let them see how your symptoms vary from day to day. This may help them identify your triggers--do you always feel worse at certain times of the month, right before a storm, after you eat certain foods, or get too little sleep? Maybe they'll find a food allergy, hormonal imbalance, or sleep disorder. Or maybe they'll be able to look at a more accurate and detailed description of your life, and agree that it is fibro. Even if you get a diagnosis of fibromyalgia, it isn't a guarantee that you're mom will instantly understand how you feel. My mom is super about helping me so I don't overexert, allowing me to keep a more flexible schedule, and being a great comfort when I just feel horrid. But even she will sometimes suggest that maybe I just need to keep a better attitude, move around more, or stop thinking about it so much. None of which are bad ideas of course, but when you're in such pain you're ready to rip your hair out, not really the help you need! Still, no matter how hard they try, they can't fully understand something they've never been through.
If you are diagnosed, have your mom come on here and read some of the information. The more educated your family is about fibro, the better they can help you. Understand also that your mom may be in denial about your pain, because she doesn't want to believe that you're really sick. It isn't easy for a parent to see their child like this and not be able to help, and so long as it isn't diagnosed, she may still be able to hope it will just go away. Eventually, I think she'll accept it. After all, no one our age would want to miss out on so much in life if we didn't have to!
I hope you find the answers and support you need! Let us know how you're doing!

 

Canada17 - November 9

First let me commend you for taking charge of your body and researching what you are feeling. And for not being afraid to disagree with your mom and doctor. I did the same thing, and if I hadn't I would still be with a doctor who believed it was "all in my head" and my parents would still be calling me a wimp!

That being said, you need to find a doctor you can trust, and maybe a guardian to bring with you to your appointments that you can trust as well - that is until you are 16.

You are not a wimp, and some would even consider those of us with FM stronger in the sense that we have to tolerate and push through pain on a daily basis. We have to learn how to do things differently on our own so that we can continue to do the things we love.

But it's not the end of the world!

My physiatrist gave me an awesome elimination diet to help:
Foods to avoid: potatoes, chick peas, lime, lemon, raw onion, raw garlic, alcohol, tomatoes, grapefruit, grapes, strawberries, raspberries, peaches, kiwi fruit, cranberries, eggs, white flour, white sugar, vinegar, no yeast products, watch milk products, no bread except for rye and pita.

These are foods that are commonly known to increase flare-ups and worsen symptoms in FM sufferers. After two weeks, start reintroducing the items listed one by one and see if you notice and increase in your pain, if you do, you know to avoid that item.

That being said, it won't cure FM, if that is what you have. In the absence of any other conclusive finding via blood, urine, scan tests, you may find that you are diagnosed with FM. There may not be a cure but there are ways to manage the pain and help you cope.

You are doing the right thing in questioning what you are being told if you feel that you aren't being heard properly. You are lucky that you are so in tune with you body to know that there is something going on that you can't explain, it's the first step to figuring it out. The next is to find a doctor who recognized FM as a real condition, because it is. If someone tells you it's "in your head", they are being ignorant and unhelpful.

Surround yourself with people who want to help you, and know that you are not alone. There are so many of us who have been in your shoes at one point, and we are all here for you if you need us.

You may also want to see if there is an FM support group in your area that you can go to. You may be able to get a referral to a good doctor who can help you.

Keep pushing through, you can do it! And remember, stress can make this condition much worse, as hard as it is, try to avoid it as much as possible. If you feel that you are getting stressed, remove yourself from the situation, if possible, and revisit it later.

Good luck, PianoPlayer.

 

lorieholtz - November 12

pianoplayer,
congrats first of all for finding this site. i can only tell u by my own experience how helpful the ppl in here have been to me. so know that at anytime of day or nite u can always come here for support. i feel so bad when i hear of teens going thru this type of pain, i just cant imagine.. these are the yrs u should be able to enjoy to the fullest. i noticed ur nic name, do u play the piano and if so how often. some of those symptoms that u've given are those of carpal tunnel and there are dx testing for this problem. and yes this pain can start from the fingers,wrist and on up to the neck. i used to work for a dr that we had alot of patients with this issue. anyone that does anything repetative can easily get this. i was dx with it bk sometime ago and it came from typing and also from nerve damage in my neck.
hang in there and come bk and let us know how ur doing
lorie

 

mlocklear - November 16

hi,my name is martha locklear and i have fibromyalgia to, or my doctor thinks i have it. all i know is that i hurt all the time and it is no joke. sometime the cold wherther does not help or the rain. and i can not set in my living room with the fan, and i have to wear long pants all thetime, for along time they say i have RA, but i feel that they don't now. i am just so tried of hunting all day. i am trying to go to college and it is very hard we i feel bad and if i do not have my pain med, i could not make that day,and the lorcet that i take are the 10mg and some days i have to take 4 or5 . then it does not help. i have to take a spill pills to help me to, my son help me out trying to rub my hand,knee and shoulder, put sometime i have to stop him because it hurt to much. what do you do to stop the pain???

 

HDBosworth - November 16

PianoPlayer,

Have you seen a sleep specialist? A big part of my problem with FMS is sleep. Without sleep my body is in pain.

 

Canada17 - November 16

HDBosworth, I'll second that!

I was on amitriptolyne, 10mg, at bedtime for a couple of weeks. Best sleep I've had in years! I didn't wake up stiff and sore, I was actually able to get out of bed and go I didn't need to wait for my body to catch up with my mind!! lol

I had to stop taking it because of a rare adverse reaction (blister-like pimples on my hands that were itchy and painful) but I wish I still could take them!!!!

 

PianoPlayer - November 25

Thanks for all the advice and replies guys they all really help by telling my I'm not crazy :P

Good news is that I'm 16 now, and I can go to the docs on my own though my mum told me in no uncertain terms that she would not be very happy if I did...which means if I did there would be tonnes of shouting and a one-sided argument on her side.

HDBoswork I haven't been to see a sleep specialist, I'm lucky if my docs refer me to see a orthopaedic doctor.

lorieholtz I can only play for five minutes before I have to stop. They already did an MRI to check for carpel tunnel and surprise surprise it was negative.

 

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