The past 2 days have been horrible. I have felt so bad and so tired. I went to sleep early Friday night and slept til 4 or so yesterday. The rest of the day I felt like crap and hurt all over. I laid in bed and watched tv.
Then, I went to bed early and slept til about 2 today. I been in my room for 2 days now. Sleeping. Everything has been hurting and I been feeling really down.
It's hard because no one around me knows whats going on or how I feel. I get so stinkin depressed about it and mad at the same time.
I tried talking to a friend, but she can't understand and don't realize how bad it is. She is just sort of like whatever I hope you feel better!!! And I think...yea right that will never happen. If only you knew you wouldn't say that.
So, I guess, I just needed a place to get it out. Basically I am so incredibly sick and tired of being sick and tired and doctors telling me they can't find anything.
My arms and shoulders have been hurting more than anything and when I tell my mom she hassles me about going to ANOTHER NEW DOC another state away so he can tell me the same thing they all have....we can't find anything wrong, but maybe you should try seeing a "INSERT MEDICAL PROFESSION HERE".
So, thanks for giving me a place to vent some. Thanks
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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They usually don't bring it up and they just don't say nothing for a really long time until I do. And then they just sort of put it aside.
I am not a complainer so I don't ever say anything, and when I do we just start fighting because they think they are doing everything they can by taking me to so many doctors. All they have to do is ask or demand something from my original doctor and that will get us somewhere. They need to stop accepting the doctors answer of 'we can't find anything', and do something.
That's what I keep telling them. They think I need to go to another Ped Rheumy. And I don't want to because I know it won't help and it will be a waste of time and money and only make me feel worse when they don't say anything.
So, I have been working really hard on getting all my info together and I am going to start pushing them and DEMAND that they talk to my doctor. Obviously it's the only way anything is going to get done and I shouldn't have to suffer in the middle so I am taking it into my own hands now.
I am going to be 16 in a week and a half and that will make it a little over 3 years since I started hurting all over and around 4 years or so since I got my first knee pain and went to the doctor the first time. So...
Thanks, I just needed to vent and get all this out of my head. Thanks
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Sorry you are feeling so poorly and even sorrier
Your parents have not pursued Lyme.
Keep asking for that one little Igenex test and a visit to a LLMD.
Tell them that is what you want for your birthday....for Christmas.....for New Year's, etc.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
What Geneal said!!!
IF my kids or grandkids ask for something like THAT for their birthday,,,hard to refuse.
have you showed them copy of Lyme dad's posts yet??
Maybe eveer Dar's toy story!!
Understanding will come,,,one little chink at a time. They cant deny forever!!
Tell them how SURE you can get better IF you can get a LLMD and meds!!!
Can somebody from HERE talk to them,let them see,,,gently?? Who is in your area and is a good ambassador??
Do you still have grandparents?? Are they helpful?? Local or long distance?? Do you have favorite aunts and or uncles,,,that are close to you AND them??? If your parents are really busy working,,,can someone else take you???
All else fails,,,are you able to drive soon?? Are you getting your license soon?? Do you have that SPECIAL friend who CAN drive you??
I agree you are definitely in a pickle,,,there is always more than one way out of the jar,,,keep working on it!!still --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Thanks. I know it has to be just as frustrating for you guys when I post. Because it is always the same thing. But I appreciate it a lot.
Actually, I have talked to my neighbor, who has Fibro and is an RN, and we are kind of pushing Fibro more than Lyme now. I don't really know why, but it is hard because they overlap so much, but I fit more to Fibro than Lyme.
But, of course, I can't be sure unless I go to a doctor who can tell me.
But, one night we talked for a few hours and everything we said was exactly alike. It was great because as different or weird as she seemed before, I found out that we are exactly alike and are going through the same stuff. She understood everything and could finish my sentences and knew. I didn't have to explain anything, which was AMAZING to me!
I don't know. I can't be sure. But, I am leaning toward Fibro right now just trying to through something.
Right now, I am not really getting worse. I have been the same. I have ups and downs everyday but I mean everything stays the same. 2 years ago my pain progressed to all over but it has stayed that way. But, nothing is changing, I don't seem to be getting really bad or nothing.
So, I don't know. Some of you probably doubt me, I'm sure, but it is hard for me to deal with it and I am doing the best I can. I am just trying to get somewhere where I can feel better and get some type of help or treatment, that's all.
Anyways, I appreciate everyone on here. Thanks for being so understanding. And I am sure it must anger some of you that I can't get my parents to do more, but I am trying. I am gathering info and doing a lot of research trying to figure it out myself for now. But, I want to thank everyone on here for giving me the courage to do what I am doing and for being here for me.
Thanks!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
Well Fibro is a syndrome. They don't what causes it but they think it has something to do with pain receptors and chemical imbalances in the brain. I think! That's what I have read.
They don't really know what causes it, they think it may be genetic, but they don't know. It isn't curable but it is treatable.
From what I have read, most people develop it after an accident, or surgery or something. But, it usually starts in young adults or adolesence.(sp). It is most common in adult women although children and men do get it.
I think it can be a symptom of something more or it can just be itself.
I don't really know. I have read all this on the internet so I can't be sure.
But, like Lyme it has many symptoms. Most common being widespread pain, sleep problems, depression, and a whole bunch of other stuff.
I am not really sure how to explain it fully, but I hope that helps. I have spent a lot of time researching it and I haven't been thinking clearly lately so that is all I could think of to tell you. I am spaced out right now.
I have been on my room for 3 days now sleeping and hurting. I wanted to play tennis so I asked my friend to play in the road and when I went out everyone was SHOCKED I came out of my room!
I am really tired, and weak, and have no energy at all. I am really spaced out in my head right now. And everything is hurting all over. So, as you could expect I didn't play long. And I didn't have as much fun as I usually do. I finally gave up and come back inside to lay down again and watch tv.
I am so tired and I keep yawning and I have been sleeping most of the day. I didn't get up today til 1. But, thats only because the phone rang. I have been sleeping to like 4 or so in the evening. I am tired but I can't sleep and when I do, it doesn't help.
Well, I am venting. I'm sorry. I was trying my best to explain Fibro. Ok, I am going to shut up now! Thanks!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Christy, many of us here at one time had the dx of FM and/or CFS. I was one of those.
I know that while I could treat the symptoms, I kept feeling worse and there was no hope of my ever improving because I had been sick so long.
When I got my Lyme dx I got hope! I have improved on my Lyme treatment and it's only been 15 months (which after over 40 years of being ill, is nothing).
While you and your neighbor seem to have the same symptoms, has it occurred to you that perhaps she really has Lyme and is not aware of it?
I have many friends with so-called FM, but in my heart I believe many of them really have Lyme. They just have too many of the symptoms and they are getting worse and worse.
They watch me getting better and think about looking for a LLMD, but they don't want to pay for one. You would think that they would be willing to pay to get better, but they are not.
I finally persuaded one friend that it was worth the cost of going to a LLMD when her husband returned from another doctors appointment where he had been told there was nothing wrong, even though they knew there was.
I asked her how much money they had spent on doctors telling them that. Then they agreed to go to a LLMD and were so grateful I had pushed them to do it.
They have both tested positive for Lyme, and they are also pursuing treatment for at least one of their children. She had "FM" years ago.
Hang in there, and don't give up. We think you are on the right track.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Yes, that has occurred to me. I thought at one time that if I did have Lyme I would tell her because she could have it also. But, she was diagnosed with fibro a long time ago and is on meds for it. She is doing good. She hasn't gotten worse she stays the same and feels better with the meds. Of course, she still has her ups and downs, good and bad days, but otherwise she hasn't gotten worse.
She is a RN and she had been sick for a while when she started nursing school. thats where she read about it and asked her doctor and he diagnosed her with it. She has been on meds since then. I think if she had Lyme she would still be getting worse even with just treating the symptoms. (I think, I guess thats how it would go).
But, I just wish I could at least treat the symptoms. If I could just feel better and be like all my friends aand stuff.
I have a lot of anxiety so I worry about every little thing. Therefore, I won't go anywhere or do anything because I am scared.
It would be great if I could get something for pain, sleep, depression, anything. I could probably use a therapist because I am so spaced out in my head now. Between pain, anxiety, depression, and stress I don't know how much longer I can go without blowing a fuse and going crazy!
So, right now just being diagnosed with FM would be great. It's a start. And I could get treatment and help for my symptoms and everything. And at least it would be known that something 'really is wrong' with me.
It's late, so, Thanks!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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There is true Fibromyalgia, but MOST Fibromyalgia is just a label given to symptoms when doctors can't figure out what's causing the symptoms.
The word "fibromyalgia" breaks down to something like "pain in the muscle" or something to that effect (can't remmber exactly how it breaks down) but it is basically a description of the pain what many of us are dealing with. Your neighbor could very well have Lyme or something else causing "Fibromyalgia."
I had the diagnosis of FM for years, but innately knew that it had to come from something!
I'm so frustrated for you and your situation with your parents. The definition of insanity is doing the same thing over and over expecting different results--they need to just get you to an LLMD--and I know you have no control over the situation which has to be awful.
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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posted
Today has been the worst day. So, I just need to vent and get it off my chest and talk to someone so here goes.
I have still been feeling bad the past couple of days, so incredibly tired and drained and hurting all over. I have been feeling so down and depressed. To the point of hating life. I don't mean I would hurt myself or nothing, that would be stupid! I wouldn't do that. I am just so tired of dealing with things.
I don't complain to the people around me ever, they have no idea how I feel all the time or what I am going through.
So, now they are complaining more than ever. It makes me so mad when they complain about having to do something or something. I never thought I would say this, but I wish I could do stuff.
My dad is getting irritated because I don't want to be bothered and he asks me a 100 questions and I don't care or want to talk and I say something in a bad tone and he gets mad and says 'there is more to life than text messaging and tennis.'
To an extent I would agree, but I can't even play tennis anymore. I tried the other day and it wiped me off before I started playing. To me there is only more to life when I am actually able to do other things.
He is mad because I don't want to help him anymore with his yards. The last time I did I accidently almost cut my foot off because I was thinking so much about cutting the stupid yard that was DEAD! I was mad and didn't want to be there in the first place, because I wasn't up to doing it. I just wanted to stay home. But, I went anyways and I had a lot on my mind, and that's why that happened.
I almost wish it had cut my foot off or my toes because I hate doing it. I wouldn't mind if I didn't feel so bad or hurt all the time now. But, he can't understand that. The doctors can't find anything and I can't explain it to my parents so they don't understand.
I just have it all bottled up inside and I am starting to blow. I am sitting here now crying so angry at my life. And why I can't understand it myself.
Well, I am kind of out of it right now so, I am just rambling on, anyways, thanks for giving me a place to let it out and feel better.
Thanks.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Christi,
After I was bitten, I developed, among other things, fibromyalgia- it went away 100% with Iv Rocephin and was absolutely 100% Lyme disease.
Yup, I would ask for an LLMD visit as a Bday present- and have them go WITH you*)!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Wilson Gal, I ask "How far is it to a GOOD LLMD???" How long of travel?? Do you KNOW of a LLMD you would LIKE to go see??
Your in denial yourself,,,thats normal!!
Find the LLMD that would be BEST for you,,,MOST knowlegable. First steps first.
If your parents wont agree to take you there THEN,,,let us know further. we will try to help--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Just thought of something else,
If you find an LLMD, ask your neighbor to go with you,,,a ride along.
Your parents, you and your neighbor would make a great way to go to that doctors appointment
,,,your neighbor could 'listen' in on your appointment OR have one of her own.
Might even split expenses if necessary.
Is it the 'money' aspect that keeps your parents from 'helping' you??? maybe it IS time to complain and whine a bit,,,they think your just lazy
Convince them by explaining all symptoms completely for a few weeks to show how you really feel. IF you hide it,,,they will NEVER know!!!
Hang in there , get well,--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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I think the 'closest' LLMD is in south Alabama. I know of someone of here who told me about one in Lousiana. I am not sure about Tennessee, Mississppi, or Georgia.
I have been telling them everything I am told on here. They know what my opinion is and they know what you guys think. I am not really sure why they won't. I think they just want to rule EVERYTHING out first.
Any LLMD I go to is going to be a very long trip. And probably expensive. I will look into finding a LLMD in the surrounding states.
Thanks
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
Oh yea I forgot! I went back to work today! It was the first time I touched a mower since my accident! It was strange and I was kind of scared at first. But, I did it. Of course, as bad as I have felt the past week I felt horrible while doing it and afterwards I was hurting so bad all over.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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I'm so sorry you feel badly. I understand exactly what you're going through as my 14 yr.old son has experienced/is experiencing the same thing.
For six years we went to countless doctors who told us "there is nothing wrong with him", "it's neurological", "it's all in his head", "it's viral", etc.
So much wasted time!! When we tested him at Igenex, he came up positive for Lyme on several bands and was also positive for Babesiosis. From what I've read, these organisms attach to the nerve endings causing inflammation and pain.
My son went through hell (and still is!). We can't hug him or even go to church together as a family because he can't sit on hard surfaces.
In the beginning it was very difficult because some people just didn't believe it. If you look at my son, he looks like a healthy teenager. But he has chronic pain and disease.
People would say "you're spoiling him" or "he's only looking for attention!", never living in our shoes 24 hour a day. They never saw him wake and scream in pain in the middle of the night or the agony he endures especially when herxing.
In grade school he was bullied by kids and hit, even though they knew he was in pain. My son has lost so much because of this horrible illness.
These should be the best years of your lives. High school should be fun not full of pain, doctors and illnesses.
I just can't understand why your parents won't listen and see a LLMD. It would make all the difference in the world. You would finally be able to get an answer, whether it is Lyme or not.
A neighbor of one of our relatives had a daughter who experienced excruciating pain for several years. Her family would say she was faking it because she didn't want to do any work.
This all started when she was seven. For some reason (I think she had a serious infection), her doctor put her on IV antibiotics for a long time (I don't think he was a LLMD) and she got better, but not completely.
She went back to high school and one day while the kids were goofing around, they pushed her into a desk. The pain was so bad that she had to be air-lifted to a hospital. She could not get up by herself!
Well, the hospital helped her a little but then she was able to get an emergency appointment at Mayo Clinic. Many people posting on the Lymenet website have said "Hold the Mayo!" and it's true.
They diagnosed her with "Acute Fibromyalgia and Candidiasis". They told her to drink strong Sumatran coffee from Starbuck's and watch her diet.
Guess what? When I suggested that our relative tell the girl's parents to check out the Lymnenet website and get an LLMD to see her, they DID and found out she has Lyme!She is now being correctly treated by the LLMD and the first thing he told her to do is STOP the coffee as caffeine is no good for Lyme!!!!!!!
I shudder to think what would have happened if we had not found out what this is!Please let your parents read this and all the other posts. Print them off if necessary.
They need to get off the proverbial health merry-go-round. Get info from the Lymenet and LDA websites.
Put it in the Lord's hands. He will take care of things and make a way for you as He did for us. After a year of treatment with a wonderful LLMD, our son is slowly getting better.
DON'T EVER GIVE UP! Find a way and it will make all the difference. Once your parents are on the same page with you, then you'll be able to find out what's going on.
You are in our prayers, Christi. Take care and God bless you.
Posts: 8981 | From Illinois | Registered: May 2006
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posted
I was diagnosed with Fibromyalgia, then CFS. They thought maybe MS. I have an appointment in September to get tested by an LLMD.
I went with the Fibro diagnosis for about 6 years now, but it keeps getting worse. And when I tell my doctors my symptoms are getting worse, they say "huh" in a curious way.
My husband asked me today when the last time I felt good was, and I totally can't remember. One thing that might help sell your parents, and I wish I could find the website for this but you can make one yourself:
Track your symptoms. I have a chart with each symptom listed, and then every day I mark severity of them. Mine's basic, it's about all I can manage in a day, so I put a dash for mild, slash for moderate, and X if it's interfering with my normal activities, and fill in the box for severe. Then your parents can see in an objective way how you're feeling.
I didn't know caffeine was bad for Lyme. I drink an awful lot of coffee.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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