Not sure what to do anymore...hear

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Hi, my name is Olivia and I've been sick for 6 years. I'm now 19 years old. This is my first time on this sight. I'm hoping it will give me more hope and inspiration to keep pushing. I had a bad night tonight. I felt "good" when I woke up today. I felt happy. I usually attend Virginia Tech, but decided to stay home for a semester and go to community college so I could focus on my health. It all started when I was 13 and I got a cold. I've never been the same since...I don't remember what feels like to be healthy anymore. I got better over this past summer, getting up to about 70-75%. My first year of college ruined me and made me much much worse. I thought I was getting better, but I'm not. I feel trapped and like this will never end. I feel like I'm progressively just getting worse and worse with ups and downs. I have hope. I was supposed to go back to Virginia Tech next semester, but it seems like that won't be happening... I'm not sure what to do anymore. Do I get more tests done? Try a new specialist? Any ideas? Any hope? I'm lying in bed right, because my body is so exhausted. My heart is killing me, going in and out of episodes of something. I can't describe the pain or how I feel during my episode. It's hard to breathe. As if my sibconcious has forgotten to do it and it's literally difficult to breathe. I'm taking deep breaths, but each breath is exhausting. Does anyone else have this kind of pain/episodes? 

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  • Posted

    Do you have an ME/CFS specialist that's helping you through this? There's a foremost specialist in Asheville, N.C.: Dr. Paul Cheney. He's been dealing with this disease since forever. I don't know if you can travel, so this is just a thought. There's also the Hunter Hopkins Center with locations in Raleigh and in Charlotte, N.C. That was founded by Dr. Charles Lapp, who used to work with Dr. Cheney. I do know the feeling of now knowing which way to turn and what to do. That's why it might help to have a compassionate, knowledgeable professional help you.
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    • Posted

      Thank you very much for your suggestions. I would be able to travel. I have a non CFS/ME helping me, but I feel like there is just not enough being done. I will look into the doctors you suggested. Thank you again, I really appreciate any help at all. I want to move forward with my life and not be held back by this terrible disease anymore. 
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    • Posted

      Olivia--I'm so very sorry you're dealing with this lousy illness, and at such a young age. Please post any other questions or anything at all that we might help you with. I live in Los Angeles so am familiar with some CFS doctors and the health system in the U.S. Guess you are having a bad night if you're posting this at 1:30 am--if I have my time zones right.
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    • Posted

      Yes, last night was particularly unpleasant. Lots of waves of pain throughout my whole body. The only way I can describe the pain is, uncomfortable. It makes it hard to breathe and I can't walk. I was exhausted from lying in my bed. It was not a fun night. The pain stopped and I fell into a deep sleep. No nightmares last night. Thank you for your advice about the doctors, I will keep them in mind.
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  • Posted

    Hi Olivia, 

    Mine started at around 18. I am now 52. HOWEVER, my cause is knowable (silicone poisoning - I had an implant put in my left breast and it leaked... so I'm kind of SOL.) You, however, are not. If you can find the thread from 4 days ago by Lyn29413, I would highly suggest reading it. It has lots of good advice. If you can't, let me know and I will copy and paste everything I can. 

    Most importantly, do not give up hope, Olivia! You must keep searching for health until you have it. Dt. Titelbaum has a fantastic book (his more recent one is more assesible to the layman than his first) about CFS. He has had amazing results... and has a video on Youtube from a presentation that he gave to docs that you could watch right now, filled with info. I would recommedn a specialist, though, as many GPs in my experience simply do not understand this. So, go get one. 

    Be patient with your self and appreciative of your body. Be thankful for the health you have and in the meantime here are my best tips:

    Here goes and everyone is different:

    1) diet is critical: eat well - lots of greens, fiber, protein. Drastically reduce carbs. Forget processed foods, processed sugar. If you can afford organic, that'd be a big help. You MUST keep eating salt, though. 

    2) Take a walk everyday, period. I don't care how tired you are. 

    3) Supplements - and I take lots - but these are critical: high doses of D3 in drop form, Ribose-D in powdered form 2 X daily, Vitamin C, Magnisium at night. 

    4) Check hormones from someone who knows what they're doing - not just any doc. Thyroid can often go south, particulary. Progesterone, hydrocortisol, etc should be tested through a saliva test - nothing else. 

    5) Attitude: yep, it's important. Keep a journal of things you are thankful for, have hope, learn to meditate if only to keep your head clear, stay away from toxic people and toxic situations. Not kidding - this can be pretty key.

    6) Melatonin at night (start with 2.5 and work your way up from there) so that you can sleep. 

    7) Try to remain positive. Try to have hope. Try to laugh. (I'm not trying to sound like a hippie here. When you are laughing, your body laughs with you. It's a very healing thing.)

    8) Keep pursuing health and what works for you no matter how tempted you are to give up. 

    9) I have recently started taking Ritalin and this has helped tremendously. 

    10) I find that after periods of virus (a cold, flu, whatever), things will be worse. Be prepared. 

    Hope this helps. I wish you every bit of success. 

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  • Posted

    Hi Olivia, if you can I would recommend starting your course part-time.  Therefore you will mentally & emotionally know that you are moving forward rather than waiting. It might mean a different Tech if the travelling is too far? Doing it part-time if poss would mean less homework and less time required in the classroom per week.  Would of helped me I'm sure when I was in your position!  I've had it since I was at least 14 and I'm now 37.  Got my degree, hubby and kids but it wasn't easy and still isn't!  You have to be determined and that does mean fighting through the pain I'm afraid.  You have to look at the things you really want and work out how to make them easier to achieve.  You've been sensible and tried the rest but it hasn't worked.  Therefore if you can I would suggest you look at another way of achieving what you want.

    Sounds like you've got a nice supporting family and with some more medical support that would be great.   

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  • Posted

    Hi Olivia, I'm so sorry you are going through this. Lots of good advice on here already, but would diff innately agree find a specialist! I know there is an amazing research program happening at Stanford university into me/cfs maybe you can contact them to help find someone good in your area? There's also a new app that's been made by one of the cf/me organisations in the states that helps you track keep a dairy of food symptoms etc maybe worth a look if you have a smart phone? Good luck, keep looking for answers and keep us posted - lots of friendly understanding people on here!
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  • Posted

    Olivia have you had tests for thyroglobulin antibodies and thyroid peroxidase antibodies ??? If not do so !!! 
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    • Posted

      Sorry I never replied. I went to my doctor, and yes I have already gotten those tested. Nothing unusual apparently. My thyroid levels always seem to be normal, although my body temperature runs at around 95.2°F which is indicative of thyroid problems. Contradictory. Thank you for the suggestions, I appreciate them.
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  • Posted

    Hi everyone. Thank you very much for all of your wonderful advice. I agree, I need a specialist. I also have a very mild form of congenital adrenal hyperplasia due to 11-beta hydroxalase. The only real affect it has is upping my testosterone. I take spironolactone and metformin for that. The high testosterone has caused me to develop PCOS(very common and stands for poly cystic ovarian syndrome). I take a low dose of adderall on the days I feel better to get my nervous system up and running. I have found that even on my good days, my whole body is just depressed and I think it stems from the nervous system, probably the autonomic nervous system. I do have a strict diet of no gluten, processed foods, refined sugars, too much of natural sugars in fruit. I have a chronic yeast infection in my body(not just in the sexual reproductive organs). I take an anti-fungal for the yeast anannual diet revolves around not feeding the yeast. I have not gotten my thyroglobin anantibodies and thyroid peroxidase antibodies tested. I have an appointment with my doctor today, I'll asked to get those checked. I live in Annapolis, MD by the way. I think I would be able to travel and see a specialist. I'm not attending Virginia Tech right now, I'm at home and taking two very easy classes at the community college. I go on a walk everyday(no matter how bad I feel). Or I go to yoga. Not a hard yoga, but more of an easy restorative times. It helps strengthen my core, meditate and stretch my body at the same time. I've definitely been keeping a good attitude. I mean, I most definitely have ups and downs where I'm not as positive, but I've been doing this for 6 years, never known what it's like to be a teenageror just be healthy, I'm not planning on giving up anytime soon. The diet has helped me significantly. I lost about 25lbs over the summer when I started it. I also had a sinus infection for almost five years that I had sinus surgery for. I don't like taking melatonin because it gives me terrible nightmares. I already have nightmares almost every night. I take a low dose of clonazepam for it. To relax my body into a state of falling asleep. Clonazepam is the only thing I have found that helps with sleep for me. I do suffer from a moderate to severe insomnia. I will make sure to get the hormones suggested tested. I do have high cortisol. I had 400% the amount I was supposed to have two years ago. It's gone down over the past couple of years. I actually am just about to submit and salivary cortisol test. I will talk to my parents today about going to see a specialist. I've been thinking that for a while, but I think it's time. Thank you all for all of your advice. I appreciate it greatly. Anything helps. 
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  • Posted

    Olivia - I would highly recoommend checking for heavy metals. The presence of heavy metals can make one exhausted AND have continuous yeast infections. 
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  • Posted

    Olivia I suffered with insomnia for many years was eventually prescribed amitriptyline , not a sleeping pill but a sedative , amazing ! At last i could escape all the awful things going on in my body for a few hours.
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    • Posted

      I've tried that before and it's too strong for my body, even at low doses. I take clonazepam which is a muscle relaxant and puts me into a state where I can fall asleep. Best medicine I have found for me and sleeping. 
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  • Posted

    Olivia have you looked up WILSONS TEMPERATURE SYNDROME ? Your temp is very low !! Just putting it in the mix worth checking out . 
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