Fibro and Symptoms : help for a newbie

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Tiber2011, Jul 24, 2013.

  1. Tiber2011

    Tiber2011 Member

    Hi, I'm a 28 year-old male.

    I started a new job this February. My old job was rather stressful, and I'd feel cold, tingling feelings sitting there sometimes. They'd go away when I'd come home after a few hours or after sleeping.

    My new job was super-stressful and anxiety-inducing. I felt like I was losing control. One day, my whole torso went into pulsating fasiculations. I went to a physiatrist; they put me on physical therapy. Also had a good back MRI on a high-powered machine that showed no serious problems or lesions.

    Still felt pain, tingling, burning and muscle twitching with some cramps all over. All developed quickly. I couldn't sleep well, either. 4 hours was the max for over a month.

    I saw a neuro, did EMG and high-powered brain MRI scan on a new closed machine. Said no diseases; all tests were clean.

    Still had symptoms.

    Did autonomic testing with a neuro, no real problems there. Still had these symptoms. Hard to walk and stand. Left leg felt super painful and I didn't do much walking in May and June.

    Last week of June, I saw a MS specialist. I was freaking out at that point. I asked to do further tests. She looked at my reams of paperwork and my CDs, and said I don't have MS. Said it's Fibro. Put me on 50 mg of Lyrica, 2x a day. (Guess I have to trust this 3rd neuro).

    I started to feel good. Felt like my legs could support me again. Walking wasn't a chore, and I could take long strides without painful, weak feelings. I started to bicycle again. Pulsating fasiculations decreased.

    Now, 4 weeks later, I feel occasional tingling and a intermittent nervy buzzing in my hands, feet and elbows. I feel rather shaky in various limbs. Haven't been sleeping well again, either. Deep down, I'm still very anxious. Could Lyrica help cause these new symptoms?

    Or can Fibro present itself this way, especially with lack of sleep?

    I get tingling and pain in the shoulder blade area, elbow area, shin/tibia areas, burning pain behind the knees, tingling-pain-buzz in feet.
  2. Tiber2011

    Tiber2011 Member

    Thank you for the tips. So sorry to hear about your story, and very sorry to hear about your sister. I hope she is able to walk and function. I've had tons of blood tests in addition to the 1 MRI of the brain. So far nothing abnormal has been shown. Also did 2 EMGs. Been so worried that I had asked for a 2nd.

    It's hard for me to trust doctors sometimes. I keep thinking I have the worst diseases and I get very scared. Maybe I read the Internet too much.
    My symptoms continue to change (twitch in arm vs a leg 2 days earlier), although the pain and wotnot stays. Lyrica is helping in some ways.
    I started taking Vitamin D supplements 2 months ago; I want to think they're helping.
  3. Nanie46

    Nanie46 Moderator

    You might have undetected tick-borne infections. Many of us here have found out we have chronic Lyme disease and other tick-borne infections.

    It is very important for you to know that Lyme testing is very unreliable. Many of us who have Lyme, only ever had negative test results. Unfortunately, 99% of Dr's look only at test results and believe them, leaving thousands and thousands of people undiagnosed and untreated.

    I was treated for 3 years by a Lyme literate MD and I'm about 80% better.

    Interestingly, many people with Lyme disease, are misdiagnosed with MS, fibromyalgia, CFS, RA and other illnesses.

    Please read this info and let me know if you need any more info:

    The first 2 links both contain good symptom lists.

    http://www.lymepa.org/Basics2007v1.2Rev.pdf


    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


    http://www.prohealth.com/library/showArticle.cfm?libid=16301&B1=EG060111


    http://www.ilads.org/lyme_disease/about_lyme.html
  4. Tiber2011

    Tiber2011 Member

    Thanks for the Lyme info.

    I was given a blood test by a neuro for Lyme, which came negative. I heard it's hard to diagnose.

    I had to go to the Detroit area for work in late February, about 3 weeks before my body just exploded with this twitching and sensations and pain. I wonder if I had come into contact with a tick there?

    Usually, you KNOW you have been bit by one, even if you don't see a rash. I went camping in southeastern MI years ago, and my parents live by woods in the Chicago area. I also went to Boston and Portsmouth, NH last fall. I don't recall being bitten by one. But who knows.
  5. Nanie46

    Nanie46 Moderator

    I have Lyme and I never saw a tick bite or a rash. I know lots of people who have lyme and never saw their tick bite either.

    Ticks that are in the nymphal stage are so tiny that you would probably never see them.
  6. IanH

    IanH Active Member

    Tiber 2011:

    I get tingling and pain in the shoulder blade area, elbow area, shin/tibia areas, burning pain behind the knees, tingling-pain-buzz in feet.
    These are classic fibromyalgia symptoms and your response to Lyrica suggests you do have FM. What the cause is, is another matter.

    Can you remember if the sleep loss preceded the neuropathic pain symptoms. With many people this sleep disturbance over many months, combined with high levels of stress will cause these neuropathic symptoms. This may arise from a disturbance in the "NMDA" receptors in the hypothalamus in your brain. In turn, a state of inflammation occurs in the nervous system's immune cells. (Not a standard inflammation). This can also disturb blood circulation in the small vessels. These changes are what cause the burning, tingling, numbing and painful symptoms, particularly in the areas you describe.

    The problem for most people who get diagnosed with FM is that the diagnosis is too late and some damage has been done in the brain. The earlier this damaging process is countered the better response. It is possible to alleviate much of this with a thorough/careful program of nutritional supplementation.
    Do you take any nutritional supplements?
  7. Mikie

    Mikie Moderator

    Talk to the doc who prescribed your Lyrica. It's possible you have built a tolerance to the initial dose. With many of us, it's not unusual to pick up more symptoms as we go along so it may not be the Lyrica doing this. In any case, I think calling the doc would be a good idea.

    Best of luck to you.

    Love, Mikie
  8. Tiber2011

    Tiber2011 Member

    When you wrote "What the cause is, is another matter" - that makes me rather worried.

    I have been taking a multi-vitamin of zinc, magnesium and vitamin D for 3 months, 1x a day.
    Just started this week to take a B12 vitamin.

    Before these symptoms, I was working 12 pm to 8 pm. I'd come home at 9 pm, and go to sleep around 12-1 am and wake up at 9 am the next day.
    I then started the new job in February and my body suddenly had to go to bed at 10 pm and wake up at 5:30 am.

    The week I went to MI for training, I could not sleep in the hotel. I had copious amounts of caffeine each day.

    Two weeks later, I got sleeping difficulties after the sudden onset of symptoms. I think there was a few nights of restless sleep.

    Now, I have restless sleep, and I wake up and get up 1x per night. I don't remember sometimes if I have slept or not.

    Subconsciously, I think I am terrified of my future. I have been told numerous times by the best doctors I don't have a serious disease, but my symptoms won't let me shake it off. I also have had depression and generalized anxiety since about 1994. Only in a period from 2003-2006 did I feel relatively "good." Those were my freshman through junior years of college. By my senior year, I was having panic attacks and seeing counseling at the university health center. I guess I was nervous about the "good times" coming to an end.

    After college, I went sort-of downhill, but never felt items so seriously inside. By 2010-2011, I was feeling good and energetic again. Last year, 2012, I was in that stressful job and I'd feel cold tingling in my arms and legs while sitting at my desk. I'd also get panic attacks at work and hyperventilate. I did have 1 or 2 bad back spasms. I didn't have much time in 2012 to exercise - no biking, no beach visits, no fun time with my car. If I wasn't stuck putting in long hours at work, I was searching for a job, going on job interviews, or running errands/laundry, trying to make ends meet, etc.

    In Feb of this year, I immediately went from a stressful job to an extremely stressful job. It was an ugly transition. I really hope this scenario caused me to feel this way and it's not a neuro disorder emerging (even though, as I've stated before, I asked for 2 EMG-NCTs and have been seen by probably the best doctors outside of the Mayo).

    During the new job transition/rapid onset of symptoms, I did not sleep. I think 3 full months went by where I slept at a max 5 hours per night. 3 hours was the norm. I'd wake up frequently, have occasional nightmares, or I'd be having very tiring sleep. I'd wake up at 2:30 am breathing like I just ran up a mountain, my eyelids squeezing shut, my temple hurting from tension.

    I've had trouble with meditation (when I sit still, I notice everything even more), and although I'm a Christian and pray, all my prayers are focused on my condition or on other people's illnesses.

    Biking is the only thing lately that helps me get my mind off my symptoms. And, strangely, I don't feel much when I do bike. Lyrica helped me feel good enough to buy a bike, and now I lug it up and down 3 flights of stairs to cycle. A month ago, before Lyrica, I didn't even want to stay at my apartment. I wanted to stay on the ground floor of my parents' home, checking for signs of atrophy and testing to see if my limbs still work.

    Lyrica now has helped me at 50 mg in the morning at night. I wonder if it's possible that I have built a tolerance to it now on week four. Initially, Lyrica would knock me out and I'd feel all woozy on it. After week 1 on it, those side affects went away.

    Sorry for the long post.
  9. IanH

    IanH Active Member

    You will not have built a tolerance in four weeks. It is normal for the side-effects to reduce usually after 1-3 weeks.
    If you have FM then you must take it slowly. If you overdo it then the symptoms will increase despite taking Lyrica.
    Lyrica will probably making you feel better but you are still suffering from FM.
    It is also very common for people with FM to feel fine when doing the exercise, like biking and then to go a bit further but this can be a trap. Structure your exercise increases carefully and deliberately. Don't be tempted to do more more because you feel fine.
  10. Tiber2011

    Tiber2011 Member

    I heard I could have built a slight tolerance since I'm taking only 50mg.

    Would going up to 75mg make a difference? I'm almost done with my prescription of 50 mg, anyway.

    I'm so anxious; I am getting twitches and fasiculations/undulations in random muscles again, plus buzzing/tingling in my hands, feet and ankles, and pain in my knees, shoulder and legs.

    The thought of MS just won't let me rest. My mother even said "OK, so you have MS, so what?"
    My ophthalmologist even told me to stop worrying about it because he would have seen it, but I want to beg the neuros to give me another MRI.
  11. IanH

    IanH Active Member

    No! you will not have built any tolerance in 4 weeks. Trust me, I spent 15 years researching and working on drug induced tolerance for many drugs. However you could safely increase your dose anyway but discuss with your doctor.
    I thought your MS specialist had ruled out MS on the basis of your scans. Without signs of MS on the scans it is not possible to give a diagnosis of MS. Why are you worried about MS? You have symptoms of FM.
  12. Tiber2011

    Tiber2011 Member

    One neuro did the scans, and two MS neuros both said they're MS-free. Did a ton of bloodwork, too.

    I guess I always lean towards a worst-case scenario. Just symptoms that blew up on me and won't go away really bother my psyche. I hate talking to my family and freinds in the medical field about it. They all give the same response to fibro: "That's a general thing dr's give when they don't know what's up with you."
  13. Nanie46

    Nanie46 Moderator

    Tiber20111,

    Here is another link with Lyme info that I recommend reading. In order to really get better, it is important to find the root cause of your symptoms. It is not helpful to be given a diagnosis with no known cause since they will not be able to treat the cause, only cover up the symptoms.

    http://www.angelfire.com/biz/romarkaraoke/whento.htm