msk
Figuring us out
Posts: 14
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Post by msk on Mar 5, 2011 22:55:11 GMT -8
So, as we discussed in my intro, I have constant shoulder pain.
My knees, during this heinous weather, feel creaky and achy.
My back is achy.
Hell, my SKIN hurts. It feels like my whole body just has that ache that you get when you get a bad, bad cold or the flu.
Adding the healthy dose of anxiety disorder (which probably is coupled with OCD, I've just not been formally diagnosed with it), and depression, and I tend to get to FML stage pretty quickly some days.
When I talk about how I hurt, and how tired I am constantly, nobody seems to take me seriously. My mom, as much as I love her, will tell me that I just need to lose weight. I didn't have any issues until I fell in a parking lot, across a concrete planter island thingy, about eleven years ago. Ever since then, when I seriously injured myself (dislocated a couple of ribs, bruised the bones of my forearm, bruised my elbow joint, and bruised both my hip and knee joints), I have put on over 100 pounds (and that occurred within four years), and I get tender to the touch.
I hate it.
I hate not sleeping.
I hate constantly taking ibuprofen.
I hate having people tell me that if I'd just lose the weight, I'd feel fine. I'm TRYING to lose the weight, and it's not fucking coming off.
I'm hurting, pissed off, and grumpy.
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Post by kmcm on Mar 6, 2011 0:37:26 GMT -8
We will always take you seriously. Ask Pahz about the whole "If you lose the weight you'll be better" mentality. She was told that multiple times from a stupid doctor for god's sake.
I know what you mean about your skin hurting. My nerves act up so badly that just wearing clothing kills me.
Hugs and support from me. i hate it with a passion when the ones closest to you don't take you seriously because they don't understand and can't feel what you do. They don't GET IT. You just want them to feel it for 5 fucking minutes so they'll shut up.
*sings you a lullaby* Dream about purple bunnies in an orange field of flowers. Or the poppy field from the Wizard of Oz. that'll make you sleep.
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Post by Pahz on Mar 6, 2011 4:03:29 GMT -8
The achy skin/flu-like symptoms are classic fibro problems.
I can't go into a lot of detail right now because I have to drag my fibro-ass upstairs and shower and get my day started because someone is coming to look at puppies this morning, but I will be back later with a lot of typing and seemingly repetitive and useless information.
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Post by Pahz on Mar 6, 2011 9:23:56 GMT -8
Okay... now... Skin hurting and/or itching is a symptom of fibro. Flu-like symptoms are one of the most common descriptions. Here's a link to my blog before my fibro diagnosis. And here's a link to the one after my diagnosis. (and for shits and giggles, here's the link to my fibro blog that I call "Pahz lives with Fibro").There is no "trick" to getting a diagnosis. You just have to find the right doctor and hopefully they'll listen. But I can tell you about how I did things. I printed a list of the symptoms and next to the symptom, I wrote whether I had it or not and to what severity I suffered it. I also wrote how I felt on my worst days and then how I felt on the best days (and then printed them up for the doctor). At the VA hospital, I have to see a GP before anything else and that GP has to recommend me to a rheumatologist. (I got in rather quickly, which surprised me). I don't know how things work in the non-VA world, so I don't how you go about this thing or if you can just outright ask to see a rheumatologist. But they're the ones who can and do diagnose in the proper way. If the haven't already (they had for me by then), they'll do a bunch of tests to rule out other things (these are usually blood tests; I also had a bunch of scans that included drinking disgusting stuff and the scan itself took all of thirty seconds; and I had an EEG). Anyway, that's kinda how they have to do it- rule out other things and then do that 18 tender point test. I also had a "hot spot"- a severely painful area that was constantly painful. It was my right hip, from my waist to my hip joint. That pain was so bad that I had trouble going up steps. Two weeks on the first medicine (cyclobenzaprine/Flexeril) and that went away. I'm on Gabapentin three times a day (300 mgs, 3 times a day). It seems okay, but its still kinda new to me. Sleep is crucial. Without proper sleep, your body can't "recover" from its day. Its called "restorative sleep" and if you're waking up every ninety minutes from the pain or getting your sleep in napping intervals, you're not getting restorative sleep. ETA: Ibuprofen MIGHT exacerbate some of the problems with fibro, but I can't be sure.
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littlematchstick
Figuring us out
Beauty comes in many forms, she is one of those forms.
~Blessed Be~
Posts: 38
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Post by littlematchstick on Mar 6, 2011 13:38:33 GMT -8
I have to second what Pahz said about writing the symptoms down. I took her advice and did that exact thing when I went looking for my diagnosis of fibro. I have a great doctor who listens (and was actually grateful for my list of symptoms--he kept them and put them in my file). Just be very clear on your symptoms and how severe/or not severe they are.
I also can sympthize with your family not understanding. I'm 26 years old and also really overweight. Mostly cause I just never feel like doing much, I eat properly though. My family is shoving the whole *weight* issue down my throat too. And my mom is not the least bit sympathetic to my pain. She has had a lot of surgeries and lives with pain everyday..so she thinks I should just suck it up and not ever complain about it. I'm not really looking for "oh Im sorry, your life sucks so bad", I just wish they would be a little more understanding. So I get it, and I'm sorry you have to deal with that. I really don't think those who DON'T have fibro will every trully be able to understand what it feels like. I too feel like I have the flu almost all the time, feeling exhausted, achy, headaches..etc.
I am currently on 2 or 3 Ultram (50 mg) a day, depending on my pain level. I try and only take 2, but some days I need that extra one to get through the day. I'm also on Celexa (antidepressant) because I get depressed VERY easily so it helps to keep me a little bit more level even on the days I feel like shit.
I hope you find a great doctor and treatment that works for you. Try and be patient with your family..I know it's hard. Once you find a treatment that works for you..it will really help. Finding this place helped me as well..cause I can rant and rave and people will actually LISTEN and understand what I'm going through. So rant and rave!
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msk
Figuring us out
Posts: 14
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Post by msk on Mar 6, 2011 17:14:31 GMT -8
Thanks, Pahz. I've read your blog before, although I'll admit I mostly read the Conversations With The Disabled Guy blog. Anyway, I read both of those posts, and yeah. I totally see it, because I'm reading this and saying, "YES! YES! A THOUSAND TIMES YES! That is EXACTLY how I feel!"
I am 35 years old. I should not feel like an old lady every time I get up in the morning. I should not have put on over 100 pounds in under four years. And dammit, I should not be dealing with anxiety disorder and depression. But, I am.
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Post by Pahz on Mar 6, 2011 18:40:03 GMT -8
I've been "lucky" in that I haven't had the depression or anxiety. I can only assume if you've had even a mild issue with it before, fibro would multiply it because that's what it seems to do to other symptoms.
When my shoulder acts up, it is so painful I have to fight tears. When my feet hurt, its so bad I can barely walk and so on.
And now you know of my three blogs- the boring one about me never leaving the house which rarely gets updated, the disabled guy blog, and now the Pahz lives with Fibro.
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Post by winterwhispers on Mar 13, 2011 16:25:09 GMT -8
I'll toss in my 2 cents... I have fibro as well, and luckily was diagnosed quite quickly. I also have hypothyroidism and was told that many of the symptoms can be the same. So if you have one, it can mask the other. I have had hypothyroidism for 12 years. I have labs drawn at least every 6 months to check my thyroid levels and have the meds adjusted if needed. I do find that when I need them adjusted my depression, weight and pain increases. Along with my lack of restful sleep. I was told by the rheumatologist that as absurd as it sounds, exercise helps the fibro pain. Low impact things such as walking, swimming/water aerobics, yoga and pilates. I walk daily at work (a couple miles worth usually) but want desperately to add in the swimming. I'm on the cyclobenzaprine 3x's daily. I totally understand how you feel about the only being 35, shouldn't feel this old. I'm 34 and say the same thing all the time. I'm too fucking young to feel this fucking old damn it. And many of my friends and family agree with me. While most of them can't understand my pain, I do get empathy from them, luckily. I have a great support system. Anyhow I'm rambling... I do that a lot
I agree that a list of symptoms and how badly they affect you should go with to the dr (I put mine on my phone and read it off to my dr. She typed it all into my record--everything is done electronically and she has you read what she's writing in your file as she goes). Every little bit helps in getting a diagnosis and the proper treatment to get you surviving better.
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Post by Pahz on Mar 13, 2011 19:05:41 GMT -8
I've had hypothyroidism since I was 18 (I'm 41 now). For the first almost-year of my "thyroid acting up" they told me it wasn't... but couldn't explain all the symptoms.
It was ridiculous. But, back when I was diagnosed, they rarely even checked for thyroid problems and now it's one of the first things they do.
So here's hoping that for the future sufferers, it'll get easier to get a diagnosis than it is now.
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msk
Figuring us out
Posts: 14
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Post by msk on Mar 13, 2011 23:43:00 GMT -8
Oh, they have run thyroid on me before...but not a full thyroid panel.
So, as a result, I have been told that there's nothing wrong with my thyroid. Um, my grandmother has thyroid issues, and takes Synthroid every damn day. That stuff is hereditary, as far as I am aware. I have a cousin who has had issues with her weight, her skin, her hair, and various other hypothyroid symptoms...and has never been diagnosed. Same side of the family.
But, every single doctor has just patted me on the head and told me that I'm FINE.
Orly?
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Post by Pahz on Mar 14, 2011 2:42:53 GMT -8
OHEMGEE! Then you MUST BE!!
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msk
Figuring us out
Posts: 14
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Post by msk on Mar 14, 2011 9:02:51 GMT -8
I know,right? The doctor says so!
Yeah, those were my eyes you heard rattling around....
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Post by winterwhispers on Mar 23, 2011 19:23:00 GMT -8
I have got to keep up on this board... I'm such a slacker. I have a hypothyroidism "horror" story. Now, I'm going to list my weight by age and pregnancy #. (I was as self conscious about being thin as I have been about being fat). At 18/19 when I had baby #1 I was 96 pounds pre pregnancy, 105 post pregnancy. Baby #2 I was 21 yrs old and 110 pre pregnancy, 140 post. This is the point when I went to my dr a year after having had baby, had labs done and was told "I was within normal limits". With my father and grandmother both with hypothyroidism and my #'s being on the very high end of "normal". I struggled and progressively got worse with my symptoms over the next 5 years before I found a dr. that listened and checked again and finally diagnosed me. By the time I saw this new dr, I had gone from being 110 lbs to 160 lbs. I was now in bed "resting" for 18 hours a day because I couldn't stay awake and not taking care of my two kids very well either. Then I got pregnant with baby #3. Post pregnancy I was at 186 and been struggling to get it down ever since because of my stupid thyroid. I had lost 20 lbs and then my thyroid got all wacky again then the fibro set in. I've since gained back the 20 plus at least 5 more. I couldn't work out any longer because I hurt so badly I had a hard time getting out of bed even. Now I have my thyroid under control again, but no more gym membership. So I'm not sure how I'm going to loose any weight now Anyhow, you should request a full panel be done, because it could be a combo of both fibro and hypothyroidism.
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