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jessiedyan 09-27-2012 06:12 PM

constant pressure in head/neck, chronic pain & fatigue, weakness, etc.
I'm a 23 year old female, and every single day for the past 2 months I have felt absolutely horrible. I experienced no significant physical or emotional trauma that could have caused these symptoms to transpire. I have so many symptoms it's hard to keep track of them all. I'll try my best to list most of them:
- constant fatigue
- constant pressure in my head and neck
- headaches accompanied by throbbing in head, or usually just the throbbing
- weakness/pain in arms, legs, hands, and feet
- jaw pain (my jaw is often shaky as well)
- face pain
- fairly constant dull, achy pain in ribs (worse when I try to sleep and when I wake up)
- severe back pain (gets worse at night)
- lightheadedness
- dizziness
- uncontrolled body twitches (worse when I try to sleep at night)
- body convulsions (at night when trying to sleep, or I wake up in the middle of the night shaking)
- shortness of breath (worse when I try to sleep)
- noise sensitivity (loud noises give me headaches and cause me to twitch)
- ringing in ears/head
- abdominal pain, usually sharp pain centralized in the lower left region and/or in the center directly below my ribs
- throbbing in stomach
- double vision
- spotty vision
- occasionally my wrists will be so tender I can't put pressure on them at all
- difficulty speaking
- confusion
- nausea
- difficulty urinating
- hair loss

...and the list goes on. I've been to my PCP, a neurologist, an upper cervical chiropractor, and most recently a rheumatologist. So far the tests I've had done include a myriad of blood work (including lyme's disease, west nile, myasthenia gravis, heavy metals, CBC, thyroid stuff, and more), head MRI, neck MRI, pulmonary function test, 24-hour heart monitor, and an EEG. All of these tests came back normal, except my neurologist told me the EEG had a very very slight abnormality, but not enough to draw any conclusions. Every doctor I have seen says I have anxiety and in some way has hinted at antidepressants. I will admit that I do feel anxious and depressed, but I did not feel this way until I started having these symptoms because I am terrified and feel like crap, and isn't that enough to make someone feel a little down? I am so frustrated and scared because I feel like every doctor I see doesn't take me seriously. I feel like a crazy hypochondriac lady. I've been in the ER 6 times (I think) in the past two months. I Google my symptoms on a daily basis. I just want answers. I need support. I need someone to tell me they know what's going on and that everything is going to be ok. If you have read all of this, I truly and sincerely thank you. If you know anything at all about these symptoms please share your knowledge with me! Thanks and God bless you.

annalisa9397 09-30-2012 07:47 AM

Re: constant pressure in head/neck, chronic pain & fatigue, weakness, etc.
I'm so sorry you are going thru this. Your symptoms are the same symptoms I had. I was in and out of the hospital also. The drs thought I was crazy. My lyme test was negative in the hospital. It wasn't until I got to a lyme literate md that I recd my diagnosis of Lyme disease. I googled my symptoms just like you are - lyme kept popping up. I knew it had to be that because everything else had been ruled out. I def recommend you finding an llmd.

zip452 09-30-2012 03:12 PM

Re: constant pressure in head/neck, chronic pain & fatigue, weakness, etc.
I am 24 and I have had many of the same symptoms over the past 6 months. I also have been in the ER lots - but not so much over the past 2 months as I have almost given up. I just want you to know that you are not alone. I also get that exact same reaction from doctors - that they do find issues with my tests but they still think that I am anxious, and they seem to think that the anxiety is the only thing that matters, that I don't actually feel as badly as I say and that my anxiety is making me feel worse than I do. Unfortunately I don't even tell them all of my symptoms and I downplay how bad I am feeling as I don't want to sound like a complainer. If I felt better I am 100% sure I would not be anxious or sad at all! I wish that I was a male often - as I feel that they would take me more seriously.

I have seen rheumatologists and I have been diagnosed with lupus but I am sure that there is something else going on causing most of my symptoms. I also have had lots of weird infections - and I feel like no one notices or cares - they just treat it with whatever their book says and think that I should be better by the end of the antibiotic course. I am going to see an endocrinologist sometime. I understand why you just want answers, it doesn't feel fair when we have so many symptoms it feels like like the doctors are missing something major. The doctors seem to move so slowly - sometimes it seems like they don't realize we are living with all these symptoms every single day and night and it does not feel like I can survive like this forever - let alone another month or two. We are so young - we don't deserve to feel so completely awful every day. My doctors seem to be passing me around in circles and no doctor seems to take responsibility for anything.

All I can say is keep trying - it is YOUR health and your life - the doctors can think whatever they want, if you feel that something is wrong - something likely is and the doctors need to do their JOB. We are the only ones that can truly advocate for ourselves. Go see a psychiatrist or counsellor if one of your doctors suggests it and try to use it almost against them to to help advocate for yourself so that hopefully you do get medical answers sooner. Any psychiatrist is going to want physical medical conditions ruled out before they write it off as psychiatric. Even if there is a significant psychiatric basis there are treatments that do work - so do not feel hopeless. Hopefully they find the medical condition causing all of this and can treat that. I know it is scary to feel like what you have is untreatable - even if it is, there is still symptomatic treatment and you will not be left with no help whatsoever. Do not feel completely alone - unfortunately there are others like me going through a similar rough patch, mine is going on the 8th month and I am still here and still keeping positive despite most of my symptoms worsening. I try not to google anything as I know that even if I find something I will not be able to communicate it to doctors and it will just stress me out more. I did at one point make a list of the 5 most possible diagnoses, and I found that helpful. Hopefully you feel better soon and get answers as well. Stay strong for yourself and keep taking yourself seriously :) There is no point in doubting yourself - it will not help you feel better, so stay confident in yourself. Record all of your symptoms each day in a journal, and it may help to think about what you "want" from each appointment that you have, sometimes it may just be something simple - like I want _____ blood test, or I want to talk about _________ symptom. I hope that you can start feeling better. I am sorry I cannot tell you I know what is going on or that I know for sure that you will be okay.

jessiedyan 10-01-2012 12:09 PM

Re: constant pressure in head/neck, chronic pain & fatigue, weakness, etc.
[QUOTE=annalisa9397;5064497]I'm so sorry you are going thru this. Your symptoms are the same symptoms I had. I was in and out of the hospital also. The drs thought I was crazy. My lyme test was negative in the hospital. It wasn't until I got to a lyme literate md that I recd my diagnosis of Lyme disease. I googled my symptoms just like you are - lyme kept popping up. I knew it had to be that because everything else had been ruled out. I def recommend you finding an llmd.[/QUOTE]
I had no idea there were specific doctors just for lymes disease. How are you doing after your diagnosis? Thank you so much!

annalisa9397 10-01-2012 12:18 PM

Re: constant pressure in head/neck, chronic pain & fatigue, weakness, etc.
To be treated properly for Lyme disease, you need a lyme literate md.
Your symptoms are very similar to mine.

jessiedyan 10-01-2012 12:29 PM

Re: constant pressure in head/neck, chronic pain & fatigue, weakness, etc.
Thank you SO SO much for your support and kind words of encouragement. I cried like a baby when I read your response to my post, because for the first time in these past 2 months I actually feel understood and respected. I know what you mean about downplaying how bad you are feeling. At first I couldn't hide it, I just sobbed in the doctor's office because I felt so physically worn out and emotionally frustrated. Now I'm much more composed because I'm afraid if I break down they're just going to take that as a sign that I'm depressed or overly anxious and that's my only problem. And yes! I am also 100% positive that I would not be anxious or depressed at all if I felt better! In fact, there are so many good things potentially going on in my life that this stupid sickness is holding me back from, and THAT is what is making me sad.

To spare room and your time, I'm just going to say that I adamantly agree with every single statement you made about doctors and the healthcare system and just everything you said in general! Ah! I feel so liberated and so happy to know that someone out there actually [I]gets[/I] it.

I have a follow up appointment with a rheumatologist in 2 days. He is going to discuss results of some blood tests he ran, including lupus. He also wants me to see a psychiatrist, which I have made no effort to do yet because quite frankly I'm afraid they're not going to look at any deeper issues and just medicate me. I don't know any good psychiatrists in my area, so maybe I should ask around.

You're right. We are young and we are supposed to be healthy and vibrant and full of LIFE! But instead we feel like we are dying. It isn't right and it also isn't right that doctors just poo it off as stress and anxiety. Thank you so much for being such an inspiration. It's so uplifting to see that you have been dealing with this for 8 months and you are still staying so hopeful and positive. I will keep you in my prayers! I cannot thank you enough for being a light in this dark time in my life.

zip452 10-02-2012 03:23 PM

Re: constant pressure in head/neck, chronic pain & fatigue, weakness, etc.
You don't have to thank me, I am sorry we are going through this :( It was nice to read your posts as well! I was the exact same way when all of this first started with me. I am glad you have been successful in composing yourself - I have found that it helps. I was pretty shocked and really very ill at the beginning, I tried to do everything I normally do in my life and tried to hide my illness from everyone but my doctor. That really did not work in my favor though. It wasn't until I realized I wasn't getting better overnight or ever on my own that I really broke down. It just became harder to hide as I became sicker, and everyone including my doctors and family just assumed that the psychological part was getting worse instead of the reality that the physical illness was getting worse. I then became really upset as the illness began actually interfering with my life and I couldn't just ignore it. The actually admitted me to the hospital for a week as I was so sick with elecrtolye imbalances, low blood pressure, nausea, swollen joints, etc. but the doctor I saw for followup after I was discharged was the worst doctor I have ever met. It seemed like all of the sudden when I needed them the most the doctors decided to as you put it "poo poo my symptoms away due to stress" and I was left with no real followup or hope and I really felt like I was on a sure path to dying. Overall it sounds like you have had more useful and unique tests than me in a shorter time so that is good! I hope that people keep paying attention to you.

It is really frustrating to be struggling with the system and all of these non-believers when we are also struggling so much with our health - I totally understand where you are coming from. There is absolutely nothing fun about this.

Do not be afraid to go to a psychiatrist or a counsellor. I hope that your doctors will appreciate it because I think it sends a sign that you really do want to get better - from all of your symptoms - no matter what the cause is. They also may take more risks in testing you for things as they know that you have support should they find something scary for people our age. I think that most of the doctors do care - they honestly don't want 20 year olds to be so sick - but I think that their fear about finding something serious or potentially causing us more problems through complications from tests or procedures really holds everyone back from getting real answers in any sort of timely fashion. It is actually proven that young adults have the worst cancer prognosis - worse than pediatrics and worse than geriatrics. We are really a forgotten demographic in the medical world.

I hope that you can find a psychiatrist that is not medication focused. Be completely honest with the psychiatrist right from the start about what is going on, what you think and feel and what people have been saying (especially your doctors). Say that you do not want medication, tell them what you told us. No one can force treatment upon you unless you are a potential harm to yourself or others. I told mine that I do not want to try medication because I do not want it to confuse any test results and I do not think that I could deal with any additional physical symptoms from side effects. Psychiatrists have the same first 4 years training as other doctors - so they do know a bit about medical tests and medical conditions and may have some of their own insight as well. They can either help you learn or refer you to something like mindfulness meditation or cognitive behavioral therapy to help you deal with the stress of all of this while your other doctors are hopefully helping you to get answers.

Hopefully the rheumatologist will have some answers for you, or at least a direction you should go in. Unfortunately many of the rheumatic illnesses take years to diagnose and the tests are not all that sensitive. I hope your life turns up soon :) I will be hoping that your appointment goes well! Thank you for thinking of me also!

jessiedyan 10-03-2012 06:50 PM

Re: constant pressure in head/neck, chronic pain & fatigue, weakness, etc.
I'm looking up psychiatrists now! I am seriously desperate and willing to try every avenue possible. I just want people to listen.

My rheumatology appointment today was a bust. All the blood tests came back negative so the doctor basically just told me to practice sleep hygiene to help improve the quality of my sleep. The thing is, I've tried it. My body just freaks out when I lay down so sleep is nearly impossible. But that's a whole other topic.

I'm really leaning towards this whole Lyme thing so I've been trying to find a doctor who will test/treat me for it. I made an appointment at the Cleveland Clinic with an infectious disease specialist, and I'm hoping that will yield some sort of helpful results because I've heard that CC has top notch docs. We will see I suppose.

Until then, I'm just trying to stay hopeful and talk to people on here to help keep that hope alive. Thanks again for responding. God bless!

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