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All about me!
(7 comments, 51 views)
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Wednesday, 13 February 2008
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On December 18th of 1998, at 13 years old, I got a cold. On Christmas night, I was freezing, had a fever and was shaky. I went to the doctor and they said it was Bronchitis and I was given antibiotics The first week of January I was dizzy and lightheaded and had headaches all the time. On January 8th my left knee started to hurt. By the 15th I couldn't put weight on my legs without crying. 9 years later and everything is pretty much the same. I've been every kind of doctor you can think of and they can't seem to figure out what's going on. I've been to Children's Hospital, Shriners, Sansum Clinic in Santa Barbara, Cleveland Clinic and seems like everywhere else inbetween. I've been to a Neurologist, Rhuematologist, Orthopedist, MS Specialist, Chiropractors, Internal Medicine, Herbologist, and many others that aren't coming to mind at the moment. I've had 70+ blood tests in the last 9 years, 7 MRIs (neck, brain, spine, both legs), 3 EMG tests, and a bone scan, all came back negative except one blood test for Anti Nuclear Antibody, which pretty much means I had a virus and it left my system without a trace. I can walk just fine, the problem is pain. I have constant pain in both legs, from my ankles to the top of my thighs, my feet don't hurt. I describe the pain as "squeezing". It feel like a very tight painful achy feeling. Besides that... my whole body is hypersensitive, my legs to the touch of a kleenex. I had to be homeschooled 3 years of high school because putting on clothes and walking around the campus just hurt too much. There's throbbing, either in just my legs or my whole body. If my legs are touched, where ever touch will hurt for about 15 minutes. Its a dull achy pain and it feels like when you touch a puddle, how the rings go out, that's how it "moves". Tingling, numbness, sharp pains, and a thng i call "popping". With the popping, it's muscles fluttering, you can see my skin move up and down, i would think it would be the same feeling of when a baby kicks, but painful. There's also a thing I call "sand".. it feels like s pinch of sand is sprinkled over any part of my body. Any of those symptoms will happen anywhere on my body, not just my legs. There's been about 20-30 times that the pain has gone into my arms as well. I don't know if I can just tolerate the pain in my legs now or what, but when it's in my arms, it's horrible. I have to constantly move them.. or else! My pain level seems to change with the weather. If it's hot, I hurt more, if it's cold, I hurt way more. If it's going to be windy or rain, I can tell you the night before cause I'll be in more pain. I'm good around 70 =] Or when there's a dramatic drop from hot to cold or the other way around, I'm bad then too. Being on my legs and sitting up for long periods of time, make me have more pain and not feel good. I don't know how to explain the not feeling good part.. i always said "i just feel blah". You can tell when I'm like that because my eyes look like I'm drugged up with nothing in me. I also get this feeling (usually when it's really cold or when my arms are hurting) where my whole body just feels uncomfortable and theres nothing that you can do but wait it out. The onlly things that give me any relief besides pain meds are if my legs are elevated on pillows or sometimes the heating pad on my back. Then there's the fun part of being a girl once a month. I've always had TERRIBLE cramps since I can remember, but with the cramps comes more leg pain than ever. This is the times I silently scream in my head, lol. So, that's it. That's the blog i've been dreading to write. I figured it was about time to though because it's hard to explain other things without knowing this stuff.
I'm very open about this, and don't mind talking about it, so if you have questions, feel free to ask them!
If you know anyone with the same symptoms please let me know.
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I really understand how you feel. My name is Jennie and I ususally don't do alot of comments. I just wander thru and learn as I go, but I couldn't help but write to you. I am having alot of the same problems. I am 45 yrs old. I had back surgery in 2000 arthritis set in about 1 yr later. I had always had alot of problems with arthritis but it has gone to my hips and lower back now. In the last few months things have been getting worse. All I could get anyone to do is give me another prescription. I have finally gotten my Doc to take another look and see if there isn't something else wrong. The weather changes get me...but then I can hurt for no reason at all. I can't sleep so more meds for that. At one time they had me on Arthritis meds, sleeping meds, pain meds, mood meds, and my thyroid meds. I have been having to take more and more pain meds and living with my heating pad. I just couldn't get anyone to listen to me. (My sister just says to throw out the meds and breath) I finally got the doc to look again like I said. I just did a MRI Monday and I got to the Rheumatologist Thursday. There are days that it feels like someone has just beat you. I feel bruised all over but I'm not. Well enough of that. If my docs figure out anything I will keep in touch. I wish you the best of luck.
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13-Feb-2008 @ 7:45:23pm
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so sorry to c u go through this with u being young and all. Hope the doctors diagnoses u soon!
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24-Mar-2008 @ 8:05:26pm
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Sorry to hear about this. I actually get very very similar symptoms with migraines. Yeah, wierd...I get migraines that are basically in my legs and arms too. Sometimes just my head hurts...sometimes just a leg hurts. It all varies, but the pains sounds uber similar... went to all kinds of neurologists and what not too and basically they finally said they just think it is another symptom of migraines for me. Don't know how similar it really is, but that is no fun either way.
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14-Apr-2008 @ 3:49:40am
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You sweet thing, I can't imagine anyone going through what you have been through, and at such a young age. Most people think that if something is ailing you, you go to the dr and you're fixed. In so many cases, it's just not so. I have a niece who has ailments that has sent her from dr to dr; each dr trying something else; but she has not felt relief. In addition she suffers from cluster headaches. So her daily life, like yours, includes physical pain. I know how this impacts her life and that of her family. I'm sure your daily life is impacted too.
I can only say that I pray that at some point you will find relief; that some dr will be able to figure out what the cause of the pain is and how to treat you. Stay strong.
Sending positive vibes ~ Linda
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8-Jun-2008 @ 5:43:13am
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T, I am so sorry to hear that you have had to live with this problem since you were so young. Everything happens for a reason and there is something that will come out of this:) you keep being strong and keep your chin up high and keep the faith and soon you will see something will happen. My best wishes and prayers to you girl:) Thanks for sharing your story with us.
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24-Jul-2008 @ 1:53:45am
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My prayers go out to you. Look to God for hope and strength. He's more than a miracle maker, he's your FATHER!
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3-Aug-2008 @ 9:55:34am
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Oh, Tarynne, I feels with you and I know how you feels with those daily pains, it's terrible and very physicals and psychologicals exhausted. I think that your symptoms is similar with my symptoms of my fibromyalghia. My pains are "walking" around in the whole of my body and change over the days where I've the worst of my pains. Sometimes I've a terrible headache that no meds can take away, only to sleep is helps on that headache. I've sleeping problems and sometimes I can only sleep 2-3 hours because of the pain and because I not feels enough tired to sleep even if it's in the middle of the night and some days I'm so tired that I will sleep all over the days. It's very changeable like the pain who can change many times over the day. I've also a couple of a slipped disc in the lumbar regions in my back and I've recurrents lumbago there and at in the whole backbone. My skins are also like yours hypersensitive from touching sometimes and it's very painful. I've also often cramps in my muscles and I can also see the muscles fluttering up and downs. I can understand your feelings about the sands sprinkling, I've called it likes a lemonades carbonate, if you knew what I means. For 2½ yrs ago I've broken my leg and since that I've a constant pain in that leg ( I've the beginnings of osteophoroses) and the DR´s says it will disappeares when the fracture has heals, and that is has, but I still have the pain and I also have a itching on my both legs, most around the ankles and a smaller sors that not will healed up. In the beginnings of this summer I've symptoms like breathless, cramp and a terribel pain in my legs when I walking with my dogs and the legs are swollen. The DR give me stockings for that but it didn't helps so much for the swollen. He says that I've vein insufficiens in my legs but how can that explaine the breathless I've?? I've an enormous thirst (I don't have diabetes).
Have your DR´s think about if you can have fibromyalgia or SLE?
I hope you can get strong through this and I hope the DR's can give you a diagnosis soon!!
Many HUGS to you!!! /Susanne (aka Suss)
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16-Sep-2008 @ 3:55:58pm
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