6 months ago I got sick

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Back in October I got sick I woke up and I was sick, I couldn't stop vomiting and I had constant nausea. This last for over two months. I had abdominal pressure and just felt really uncomfortable I began being dizzy and off balanced shortly after. I got really bad aniexty and sad but I was determined to get better I tries to work out and I had left sided body numbness after that I had leg weakness. I can't work out anymore or my legs will go weak. I try to stretch a lot walking makes me out of breath. I was 19 at the time now I'm 20. I have had crazy symptoms of all sorts. Recently I've been having headaches everyday they are a weird headache I've never had before mostly worse at night time. My neck and back are sore. I sleep 12 hours or else I wake up sick. I also developed weird knee thigh ankle pain. Days where I dont do anything make the nexts days bareable but if I walk around I feel horrible then next day my whole body feels sore when I wake up. Every autoimmune disease sounds possible CFS sounds possible vagus nerve dysfunction sounds possible. My doctors just seem lost and I just dont know what to do or ask for. I just want to know if this sounds familiar to anyone. Or what I should ask my doctor. Thank you any information or advice is appreciated.

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  • Posted

    Hi there remygirl,

    Has the doctor asked for any blood tests yet? As you say alot of things seem to fit your symptoms. Do you get the brain fog? It's like your not quite able to think straight. You can talk but it's not making a hundred percent sense or it can feel like you're on auto pilot or it's too fuzzy to even talk?

    Also, do you remember a trigger? This is common, trauma/stress/viruses can lead onto CFS/me.

    I've had CFS/me since 2012 after a car collided into mine. I have symptoms you describe as well as others. Some days I walk like I have a permanent disability, others fine, others I can't get out of bed. In the beginning-like you, I tried to continue and be fit and healthy even though it made me feel ill. I've not had the sickness like you but had a very bad day where I couldn't lift my food so well and was bed bound , I just couldn't raise myself and I kept gagging like I would be sick but wasn't. It took me so long to eat half a sandwich. I was out for the count for most of the day and it took me a few days to recover.

    I hope you have an understanding GP and I 'D ask for any tests you think might help. I ''ve had several MRI scans including a full body one which shows nothing irregular structurally to cause my leg issues (I also have one foot that goes freezing cold that was fine before the collision) and a nerve conduction test again no irregularities.

    Hope this helps

    Beverley

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    • Posted

      The only trigger I can think of was the vomiting and nausea. I had many CTS and they revealed nothing my doctor then told me I had anxiety and that was it I was crazy and it was making me nauseous. It stressed me out a bunch to where I actually developed aniexty and panic attack problems. But in December after I had my first onset of left sided body numbness and went to e.r. thinking I had a stroke and nothing was found I decided my diagnosis was wrong. It is something else I had my last panic attack in Jan. Ever since then its more body issues and soreness and fatigue and muscle pain in my legs and neck. Lots of headaches not migraines. I've had brain fog before a lot in the time I had anxiety. Not to much anymore unless its really late for me towards 8p.m. and its not really brain fog its more like zombie mode I literally can't do much except go to bed. I sleep for like 10-12+ hours if I sleep any less then that I feel the Nausea and head pain again. I've had a lot of blood tests for adrenal problems, scans of organs, vitamin mineral deciencies, lots of hormone testing, full blood counts, thyroid, basically anything that would reveal I'm tired. And a ct of the head after my weird numbness in dec. All has come back fine. Thyroid went a little low .48 but here it has to go below .40 but then it shot back up to the best its been in 6 months. I have really high b6 as well but they said it would be concerning if its low. But who knows. I am going to ask for autoimmune tests for inflammation and probably go to a holistic doctor after. I've developed a hypersensitivity to medicines and I've lost 25 pounds. Thank you so much he's more understanding then most. At least he let's me get the tests done!

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    • Posted

      There are other people on the forum who also can't see a trigger and others whose triggers aren't recognised due to them not being of a physical nature. My friend had post viral fatigue that led onto CFS/me. Her doctor was up on the condition and thus all the elimination blood tests were done and they were referred to a specialist service. I was told my symptoms were a result of the collision and not to worry about it. It was 18 months later that I was asking could I have it and got the Same tests and referral.

      Virus followed by post viral fatigue/syndrome leading onto CFS/me seems the main route but, stress, giving birth, having an operation or like mine are also routes to the condition. And as said above, sometimes no visable trigger. More research would be great!

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  • Posted

    Hi there!

    You sound almost identical to me. I was diagnosed in 2012 with Myalgia Encephalomyelitis which some will say is another name for CFS and some will say is it's own disease. My specialist (who's involved in research for ME, CFS and fibromyalgia) believes it to be a more severe form of CFS.

    I'm 46 now and when I was 18 had what my current specialist believes was a mild meningitis. I had sudden severe neck pain that was excruciating. At the time I was told they weren't sure but it was probably viral. After that I had strange symptoms for years but nothing consistent. After i had twins at 34 things went gradually downhill. In 2012 i had severe neck pain that was so bad I went to the emergency room. They sent me home with a couple prescriptions and then the next morning I had to call an ambulance. It first appeared i was having a stroke. My vision got blurry, i could hardly move my mouth and my entire left side went completely weak to the point i thought I was paralyzed. After about half an hour in the hospital i started to feel better and was discharged with "neck pain" and told i had anxiety. That started a self-driven conquest to figure out what I had.

    There are a lot of details here that would turn into a novel but basically I had a lot of your symptoms. I saw a stroke specialist/neurologist initially and had every test imaginable. After doing my own research I came upon the term "myalgia encephalomyelitis". So I looked up the ME association in my area, which happens to be Ontario, Canada. I would start there. Also try CFS Association or ME/CFS Association. This is how I was connected to the only specialist for this disease in Ontario.

    This is a diagnosis of exclusion so be prepared for some difficulty getting there smile. Go to your doctor and insist on referrals to different specialists. You're young so that can be difficult. Bring someone with you who can be an advocate for you. I had a long history of no answers, mental health diagnoses and even narcolepsy so by 2012 I was at the end of my rope!

    If you do indeed have this, the earlier the diagnosis the better chance of getting better. At this point the treatment is basically micromanaging your entire life to keep your activity level from hitting a certain threshold. I won't go into all that now because this post had been long enough! Let me know, though, and I'm happy to give you some pointers smile.

    Take care,

    Tracey

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    • Posted

      Thank you so much I've been trying to get refferals but keep getting denied. I will look up the organization and see. I had to go to physical therapy for my legs and that doctor told me she thinks my diagnosis was wrong (Patello femoral for chronic leg pain from thigh to ankel that comes and goes) and to look for a second opinion. She said it sounds like something autoimmune or nerve affecting and to keep a journal to show the pattern of my synptoms. They've been telling me its anxiety for awhile but I have not had anxiety for awhile I started meditating and letting go of control in my life and these other symptoms are still there. But thank you I will look into the organization and see what I can find.

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    • Posted

      Also I'm sorry you had to go through all of that I've been reading a lot about me and CFS I think its horrible there are not a lot of answers and not a lot of support in those studies. I hope things get better for you and people with this diagnosis. I never new this could cause horrible debilitating symptoms when I was uninformed I just thought it was a tired thing. So I skipped it and kept looking now I know more about it I see more and more that could be what I have. But I hope all is well for you and you have more good days then bad smile

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    • Posted

      One of the symptoms that pushed me into that ME diagnosis is my walking problems. I always have trouble but sometimes I can't even lift my feet off the floor. I use a cane as well as a mobility scooter when I need to. Some research is showing inflammation in the central nervous system so there would be sort of mis-firing of messages from the brain to the rest of your body. I'm not sure where you live and how referrals work but I really had to develop a thick skin to make my voice heard.

      Best of luck to you and let me know if I can be of any help. I'm certainly not a doctor nor do I know what you have but I do have years of experience doing my own research and dealing with the medical system

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