littlematchstick
Figuring us out
Beauty comes in many forms, she is one of those forms.
~Blessed Be~
Posts: 38
|
Post by littlematchstick on Feb 10, 2011 21:19:23 GMT -8
Well I don't know where to start. I've had some kind of health issue almost my entire life. But the last few years I've had a nagging ache in my neck, shoulders, head and upper back that would come and go. I always wrote it off as stress..there's always something crazy going on in my life. Or else I figured I was sleeping wrong or pulled a muscle or whatever. But the last 6 months or so the pain is almost non stop. It feels like a cross between a tension headache and a migraine only it stretches from the middle of the back of my head, through my neck, shoulders, and upper back. NOTHING seems to make it go away. Rubbing it hurts like a bitch, heat does nothing, ice does nothing. And popping IBprofun like candy does VERY little. I found out recently that my biological mother and sister (I'm adopted) were both diagnosed with fibromyalgia, and I'm beginning to wonder if I do as well. I did some research and if that's the case, it would explain SO much. I'm going totalk to my doctor on Monday, but I'm nervous. I feel like no one ever takes me seriously--afterall I'm 26 years old, I should be young and healthy and I get the feeling they think I'm making it up for attention or something. I wish I was..believe me. But it's getting to the point that I just can't take it anymore. All I want to do is cry. When I wake up in the morning my hips hurt, by nightfall my knees hurt..but my neck and and upper back and shoulders hurt ALL the time. I'm exhausted no matter how much sleep I get. I tried exercising..I was just more exhausted (so much for it being refreshing and giving you energy).
My family thinks I'm just lazy and don't want to do anything. I feel like I have the flu ALL the time basically. Like Ive been run over by a truck or beat with a baseball bat. They think I'm just being dramatic, but it HURTS. I can barely get through my daily routine (which isn't much--laundry, dishes, light cleaning, taking care of my pets). By the end of the night I'm exhausted, but I never feel rested. I get headaches at least 3-4 days a week. I've had migraines since I was 4. What 4 year old gets migraines? Seriously!? I've had MRI's, CTscans, blood tests, you name it, they've done it..it all comes back normal..which is why I stopped bugging my doctor cause he could never find anything wrong. It just became so damn frustrating. But I just can't take it anymore. There are days I just wanna jump off the nearest bridge (OK that's being overdramatic a bit, but sometimes it's a welcoming thought).
I just don't know how to approach my doctor at this point, without him thinking I'm making stuff up. I have no health insurance or job, so I have to go to the free clinic. Now I must say I just got a new doctor a few months ago, and haven't really talked to HIM much about it. So I'm hoping he might be different then the previous doctors. But I've been ignored for so long, I just hate to have another doctor tell me I'm a hypochondriac or something. Gah!
OK I think I'm done ranting..I've just been so frustrated and have had NOWHERE to get this all out. So thanks for listening, and I will now step away from the mic.
|
|
Nico
Three Digits!
burger emergency
Posts: 143
|
Post by Nico on Feb 11, 2011 1:14:04 GMT -8
First of all, hello. Secondly, that sucks. I wanted to ask, since you say they've run tests, MRIs, CT scans, blood tests - do you happen to know if they did blood tests for all the stuff they usually try to rule out before they give a diagnosis of fibromyalgia, such as Lyme, MS, lupus, thyroid issues, etc.? What kind of migraines do you have? Are they usually related to neck and muscle tension, or is the location of the pain just in your head? Are you taking anything but over the counter medication for them? I get both types of migraines (muscle tension and vascular) so you have my sympathy. Am I annoying you yet? Seriously, you can tell me to shut up anytime. It's okay to be proactive with your doctor. I was. I brought up fibromyalgia, and this was many, many years ago, before they knew as much as they know now - and she didn't look at me like I was insane, so there's hope for you. Basically, a doctor has no real reason to think you're making up an illness unless you walk in there saying, "Hi, I need a bucket of Percocet because I'm obviously dying of brain ... tumor...itis. In my back. It's probably the worst case you've ever seen, so make it two buckets."
|
|
|
Post by Pahz on Feb 11, 2011 3:16:47 GMT -8
The "test" for fibro, when they finally get to it after ruling out all the other stuff with the scans/MRIs/blood work, is a tender point test. Its an office visit without any actual testing. Mine was done with a tuning fork (which, by the way, hurt like a motherfucker when the doc would bang on it, then press it against one of those tender points). ~Explanation of what the tender points are/etc~I've read in places that they're trying to replace the tender point test, but at the moment, there's really nothing else they can do. Nico, I happen to have that brain tumor-itis in my back. You have no idea how much percocet is needed to get through the day! I walk with a cane like "House"... "House"!!!
|
|
littlematchstick
Figuring us out
Beauty comes in many forms, she is one of those forms.
~Blessed Be~
Posts: 38
|
Post by littlematchstick on Feb 11, 2011 7:52:05 GMT -8
First of all, hello. Secondly, that sucks. I wanted to ask, since you say they've run tests, MRIs, CT scans, blood tests - do you happen to know if they did blood tests for all the stuff they usually try to rule out before they give a diagnosis of fibromyalgia, such as Lyme, MS, lupus, thyroid issues, etc.? What kind of migraines do you have? Are they usually related to neck and muscle tension, or is the location of the pain just in your head? Are you taking anything but over the counter medication for them? I get both types of migraines (muscle tension and vascular) so you have my sympathy. "Hi, I need a bucket of Percocet because I'm obviously dying of brain ... tumor...itis. In my back. It's probably the worst case you've ever seen, so make it two buckets." oh Percocet..haha that might at least make me spaced out enough to forget about everything lol. But in all seriousness, I'm not sure exactly WHAT all tests they have done. They just say things like: I'm ordering blood work, and when I go back they say: Well everything looks good! "Well it might LOOK good, but it doesn't feel any fuckin better!" Fart knocker (sorry been watching too much beavis and butthead!..haha). I know they've at least tested for diabetes and thyroid issues. The CT Scans and MRI's were for my migraines--both came back normal. As for my migraines, I have both I think. I have the kind where one side of my head hurts and basically feels like it's going to explode, light/sound sensitivity, nasuea..and the finale usually ends with vomiting and laying on the bathroom floor. Now I also get what I assumed were tension headaches in the back of my head and neck which get so bad that I can barely move my head, but I don't have the nasuea, vomiting..etc. As for my meds, this is what I take: Trazadone- For anxiety and to help me sleep at night Birth control- I have HELLISH periods (thank god only 4 times a year now) Zomig- as needed for migraines (But they have horirble side effects for me so I rarely take them) Propanalol- supposed to help reduce my migraines The trazadone makes me sleep, but I still have high levels of anxiety, my psychiatrist is a douchebag and doesn't want to "over medicate me" and says that if I'm that stressed out, I need to fix what's causing me stress..(if life were that easy, I'd be a millionaire living on a yacht right now). PAHZ -- First off, house is awesome...I find him sexy in an asshole-ish kinda way..haha. I talked to my sister about how she was diagnosed and she said the same things (although I dunno if they used a tuning fork but they tested all her points). I'm a somewhat non-confrontational person, so when doctors told me nothing was wrong, I just believed them until something else came up or things would get a bit worse. But I definatley decided I have to make THIS doctor understand that something is definatley not right. I'm just not sure how to approach him exactly, I always thing that they probly don't want to see their patient walk in and say: "Hi doc, I know you went to med school for 5 thousand years, but I'm smart too..I think I have this!1!!!!1!--Now fix it!" Well, you know what I mean. I did make a list of all my symptoms that I'm going to take in with me and I obviously plan on telling him that my biological mom and sister have it as well. But is there anything else I can say/do to prepare for my doctors visit Monday?
|
|
|
Post by Pahz on Feb 11, 2011 9:23:27 GMT -8
If you make a list of your own personal symptoms, that's not the same as those "I looked it up on the innerwebz!" kinds of lists. I had that list- the list of symptoms, and next to the symptoms, I marked whether I had that particular one or how bad I had it or whatnot.
You're not self-diagnosing (which they hate), you're researching what this pain is or could be.
They're not positive that its genetic or hereditary but they don't shoot it down as a possibility.
Along with your notes, is it possible to have some kind of track as to how bad you feel on particular days? That's what I did too, like, describing your worst day to your best day kind of thing.
(I just took my fibro pill at midday, I'm supposed to take it three times a day after a week of once a day, then a week of twice a day- I tried that last week and it goofy-ed me up for the rest of the day, so I went back to twice a day till this week. I figure its a good way to test my tolerance, which is what the doctor told me to do. But it makes me over-explain things or repeat myself).
|
|
littlematchstick
Figuring us out
Beauty comes in many forms, she is one of those forms.
~Blessed Be~
Posts: 38
|
Post by littlematchstick on Feb 11, 2011 12:15:32 GMT -8
If you make a list of your own personal symptoms, that's not the same as those "I looked it up on the innerwebz!" kinds of lists. I had that list- the list of symptoms, and next to the symptoms, I marked whether I had that particular one or how bad I had it or whatnot. Along with your notes, is it possible to have some kind of track as to how bad you feel on particular days? That's what I did too, like, describing your worst day to your best day kind of thing. To make sure I'm understandign you correctly, my brain gets confused easily..meh..whatever. Basically what your saying is to have a list of the symptoms of fibro and then next to the complete list, write down if I have the symptom and how bad it is? And then at the end write a comparison of both my good and bad days? For the record, I don't have very many good days. I don't know if it's stress related or not. Everyday pretty much feels the same. My uncle was in a bad accident about 6 months ago and can't walk very well, plus he's a little...slow mentally. Not to be mean, just honest. He sustained some brain damage and he wasn't that *bright* to begin with. So were constantly dealing with him, and taking care of him. And he repeats himself like 35 times, and just can't comprehend things. We try and be patient, but it's so difficult sometimes. And my mom (adoptive mom) suffers from severe depression , among a million other things. So she can barely keep it together most days. She's also on disability and has had 3 back surgeries so she has trouble doing some things. There's always some problem, or someone bitching or yelling or arguing. Someone is always at the doctor or rehab or councelor. There's never a dull moment here. And I am just so exhausted and hurting ALL the fucking time. Sometimes I can't even think straight. OK, end of rant 2..lol
|
|
Nico
Three Digits!
burger emergency
Posts: 143
|
Post by Nico on Feb 11, 2011 12:34:21 GMT -8
Sorry to hear about your brain tumoritis in your back, Pahz. I'll bet you thought it was lupus at first - it never is, though.
I think I've exhausted my allotment of lupus/House jokes now.
|
|
|
Post by Pahz on Feb 11, 2011 17:55:36 GMT -8
To make sure I'm understandign you correctly, my brain gets confused easily..meh..whatever. Basically what your saying is to have a list of the symptoms of fibro and then next to the complete list, write down if I have the symptom and how bad it is? And then at the end write a comparison of both my good and bad days? Yes. That's how I did it (I did it all typed, because handwriting hurts, so I even had different styled font for myself versus the list of symptoms). Hey, I totally know how you feel. My spouse is disabled from a stroke (almost 15 years ago now). Along with his physical disabilities, he's got aphasia and apraxia (varying kinds of both) and I have to repeat myself often to him. Sometimes, he's on the ball. Sometimes, I feel like I have another child. And yes, stress exacerbates the pain from fibro. He got into a huge fight with me last week (because he refused to listen to what I was saying in a way to solve a problem) and about an hour later, I had a flareup. Nico...
The most popular LOL I ever created over on the LOL site... "It could be Lupus..."
|
|
littlematchstick
Figuring us out
Beauty comes in many forms, she is one of those forms.
~Blessed Be~
Posts: 38
|
Post by littlematchstick on Feb 11, 2011 18:16:15 GMT -8
awesome, thanks. I'll sit down and work on that this weekend so that I have it for monday. I really appreciate all the advice and insight, I've been so nervous about going Monday, but talking to other people is giving me a bit more confidence and calming my nerves.
|
|
|
Post by Pahz on Feb 13, 2011 4:24:06 GMT -8
|
|
littlematchstick
Figuring us out
Beauty comes in many forms, she is one of those forms.
~Blessed Be~
Posts: 38
|
Post by littlematchstick on Feb 13, 2011 6:32:50 GMT -8
Thanks so much for that..it was quite enlightening. You're *Before* blog describes me in so many ways. For example, I've been up for about an hour and this is what I feel already: Woke up with severe aching in my neck, shoudlers, and upper back. Its a burning, aching, tingling feeling. Pushing on it or rubbing it sends almost an electrical pulse through my skin, very painful. My wrists hurt as if I had been hitting a tree with a baseball bat and jarred my wrists. I got between 7 and 8 hours of sleep but I feel like I didn't sleep hardly at all. I have cut down on my coffee intake (2 cups of half caff a day). But that has also made me more tired through the day. I always feel like I have the flu. I'm sure it doesn't help that I am EXTREMELY nervous about my doctors appointment tomorrow. I have went to 3-4 different docs about my various symptoms and nothing has ever been found. They all look at me like I shoudl be a healthy 26 year old, and that I must be making it up to get attention. I kept writing it off thinking it would get better. But the last 3-6 months the pain in my neck shoulders and back have gotten to the point where there are days the pain is SO bad, it makes me sick ot my stomach. I feel stupid bringing a huge list of symptoms with me tomorrow, like I'm just being whiney and overly exaggerating all these problems. But I just can't put it up on a shelf anymore and ignore it. But at the same time I'm so damn scared to talk about it. But I realise no one else is going to be my advocate if I don't do it. But what do I do if the shoot me down? What do I do if they once again just blow me off? I'm so scared of that notion. I have no job, no insurance..I really can't afford to see another doctor. The one I'm going to is a local clinic for poor folks. I can't afford specialists and fancy doctors and all that. Even if I AM diagnosed, I can't really afford more medication then I'm already taking..I really have no idea how to deal with any of this. And it's all coming to a head today because I'm scared shitless. I just feel like sitting here and crying (ok maybe I am crying) because I'm so overwhelmed with all of this, and exasperated because I really don't know if I'll be taken seriously... God I just hate this and want tomorrow to be over with so I know what I'm dealing with and where to go from here. I need a hug. Or a new body..whichever is more readily available.
|
|
Nico
Three Digits!
burger emergency
Posts: 143
|
Post by Nico on Feb 13, 2011 11:24:56 GMT -8
One thing I can tell you is that your age has nothing to do with fibromyalgia - my symptoms started when I was only 22 years old. There are even people who have symptoms that start in their teenage years, though that's less common.
|
|
littlematchstick
Figuring us out
Beauty comes in many forms, she is one of those forms.
~Blessed Be~
Posts: 38
|
Post by littlematchstick on Feb 13, 2011 11:45:07 GMT -8
One thing I can tell you is that your age has nothing to do with fibromyalgia - my symptoms started when I was only 22 years old. There are even people who have symptoms that start in their teenage years, though that's less common. My sister was diagnosed last year and she is almost 4 years younger then me (I'm 26). So I know age isn't always an indication. But I always heard it was more common for people 35-55. And in my experience, a lot of doctors tend to take younger people less seriously because of their age. I hope that isn't the case with my doctor thought.
|
|
littlematchstick
Figuring us out
Beauty comes in many forms, she is one of those forms.
~Blessed Be~
Posts: 38
|
Post by littlematchstick on Feb 14, 2011 7:28:03 GMT -8
--------------------------------------------------------------------------------
Just wanted to update everyone:
I Just back from the doctor. He seems to also believe it is fibromyalgia, given my family history and symptoms. Although he decided to have a backwards approach to diagnosing. Because he knows I have very little money for specialists and millions of tests. He decided to just go ahead and treat for the problem, and if the medications help then he will know if he's right. I have already had countless tests, and given my history he feels it's pretty likely that's the problem.
He was very nice about everything, and listened to all my concerns and answered all my questions for me. He really appreciated my list of symptoms and kept them and added them to my file. He started me on 2 medications. Fluexatine (sp?) for the mood swings and stress, and naproxin for the pain. He's going to see me back in 6 weeks to evaluate everything and go over my list of symptoms again and adjust accordingly.
I'm really glad he listened and took me seriously, I was so worried that he wouldn't.
The main reason he is working backwards on the diagnosis is because he used to send people to specialists and they would bring back bills for thousands of dollars, and he basically said: "Why send someone for all those tests, and put out thousands of dollars when they're just going to prescribe the same medications that I am. The most important thing is treating and managing the symptoms".
So all in all, I was terribly worried over nothing (about him taking me seriously). But at the same time, at least I know what I'm dealing with and where to go from here and how to help myself find a good treatment plan.
I hate to say it, I'm actually relieved to have found the problem. I've never been so happy to get a diagnosis in my life. It answers so many questions and mysterious symptoms that I've had for a good portion of my adult life.
The frustrating part is adjusting and finding a way to deal with it. Even with a diagnosis, it pretty much sets in stone that this is a REAL problem that I know have adjust to and learn to cope with. Which is an entirely different journey in itself.
My mom pretty much has no sympathy because she has also lived with chronic pain most of her life and just basically said, SUCK IT UP--I deal with it everyday..now you have to to. Which I understand that I have to dela with it and make the best of it, but some sympathy and understanding would be nice.
However my mom has never been a very sympathetic person...so I guess to expect that from her now would be pretty pointless. Glad i have this place to whine and complain and receive some sympathy and support.
So glad I found you guys!
|
|
|
Post by Pahz on Feb 14, 2011 10:31:14 GMT -8
A diagnosis is fantastic.
When I told someone I'd been diagnosed in June, they said, "oh, I'm so sorry!" and I blurted, "I'm not! Its real, it has a name, now we can do something about it!"
It IS a relief. Fibro sucks, but it sucks less knowing you have it and its not all in your head.
So I say congratulations on your diagnosis!
|
|