Juvenile FM to Adulthood - How Do You Cope?

Discussion in 'Fibromyalgia Main Forum' started by AmbivalentCat, Oct 8, 2017.

  1. AmbivalentCat

    AmbivalentCat Member

    So, I've had FM for 12 years now. I first got sick when I was 15. I'm now 27, and my body seems to have adjusted over the years (it's much less severe than the first 3 years were), but I'm still struggling.

    I have a full-time job and just got a part time job in addition to that. Both are very physically laborious. I feel that possibly I was lucky to get it so young, because my body sort of grew into it rather than being completely overtaken by it. I'm still in daily pain, but it's at a level that I generally ignore, except for when I'm in flares. I also don't have the awful insomnia I did in the first 3-4 years.

    I was put on Viibryd last year for depression, and surprisingly it made me feel better physically, as well. Not cured, but the pain was muted compared to what it was without the antidepressant. I've accepted that there are things I will never again be able to do - I can't go shopping at a mall, or it'll cause a severe crash from sensory overload and I'll have trouble walking out of there. I can't be around any fume-intensive chemicals like bleach or nail polish remover, or those will make me sick for an entire day. I have to watch my energy level, know my limits, and know when to stop spending energy and just potato out at home. I generally ignore these rules at work, except for the chemicals, because those will make me useless at my job.

    I was on ADHD meds in high school to help get me through the school days, but I always crashed hard when they wore off, and they caused headaches. I wouldn't go back on them again. Now I'm pretty much addicted to coffee to help get me through, but that's often not enough to overcome the fatigue.

    I had severe anemia last winter, and it got serious enough that I was almost sick enough to be hospitalized. I couldn't go up two steps of stairs without feeling out of breath. It made me realize that this is how FM flares feel for me - deadly anemia-level exhausted, in addition to the increased pain, which unfortunately is usually worst in my knees.

    I'm wondering what other people do - especially young people that were diagnosed as juveniles - when they get a flare, or when they're having a particularly bad day. Generally, my flares don't last more than a week; they used to last months, so I'm lucky on that. But I still don't have anything I can do when I actually get one. I just suffer through it and make myself work even though I feel like I'll collapse the whole time. Ibuprofen doesn't work, opioids don't work, the only thing that seems to help even a little is heating pads, but ofc those don't help with the other symptoms, and they aren't mobile. What do you guys do when you're in more pain or exhaustion than usual just to keep functioning? I'd really appreciate suggestions on anything that worked for you!
  2. Nanie46

    Nanie46 Moderator

    Hi AmbivalentCat,

    Welcome to the ProHealth forums. I'm glad you found us.
    I'm so sorry that you have suffered for so long and in so many ways.
    Your story sounds so familiar to me.

    It is important to know that fibromyalgia is really a set of symptoms that was given a new name. Most doctors say it has no known cause. They say the same thing about RA.

    Everything has a cause, sometimes more than one. The root cause(s) must be identified so that the symptoms/illness can be properly treated and hopefully reversed, instead of just covering up symptoms with meds.

    In the 1970's a mom in Connecticut noticed that there were lots of children who had swollen knees and joints and were being diagnosed with Rheumatoid Arthritis.

    After some research, Willy Burgdorfer, a scientist, discovered that these children actually had been infected by a bacterial spirochete spread through tick bites. The infection was named Lyme disease because the children lived in Lyme, Connecticut.

    The official name of the bacteria is Borrelia burgdorferi, after Willy Burgdorfer.
    There are also other species of Borrelia that infect humans and cause Lyme-like diseases.

    Ticks also carry many other serious infections, such as Babesia, Bartonella, Mycoplasma, Anaplasma, Ehrlichia and many more.

    Babesia infection (Babesiosis) can cause severe anemia, air hunger, bone crushing fatigue and post-exertional fatigue, psychiatric symptoms (anxiety, depression), muscle pain and much more.

    Lyme disease is known as the Great Imitator because it can mimic Rheumatoid Arthritis, FM, CFS, Alzheimer's, ALS (Lou Gehrig's disease), Parkinson's, ADHD (especially in children), Lupus and more. Doctors also say those diseases have "no known cause".

    Lyme can cause all the symptoms of any of those diagnoses. Everyone's story is a little different.

    The most common symptoms of Lyme disease are fatigue, pain, insomnia and cognitive problems (brain fog, forgetfulness, other thinking difficulties).

    Lyme can also commonly cause sound and light sensitivities, sensitivity to smells, joint and muscle pain, balance problems, headaches, vision problems, weakness, tremors, rashes, muscle twitches, crawling sensations, heart palpitations, psychiatric symptoms and any symptom you can imagine. The initial illness may be flu-like, but not all people report that happening.

    Many people with Lyme also have one or more other tick-borne infections. I had 3, my niece has 7, my nephew had 4. The more infections, the more complicated the illness is.

    About 50% of people who have Lyme and other tick-borne diseases never saw a tick bite. People who get a bulls-eye rash (erythema migrans) absolutely do have Lyme disease. About 50% of people with Lyme never had a bulls-eye rash or any rash.

    It is also very important to know that Lyme testing is very unreliable, missing up to 50% of cases of Lyme disease. Unfortunately, practitioners are depending on these very poor tests, leaving people undiagnosed and misdiagnosed.

    I was misdiagnosed for 21 years before doing my own research and figuring out I really had Lyme disease. Turns out I also had Bartonella and Rocky Mt Spotted fever.

    I never saw a tick or a tick bite. I never had a rash. All my Lyme tests were negative. When I had a western blot through Igenex lab in CA, I had a couple Lyme specific bands show up, which I knew about since I had done my research. The overall test was read as officially negative, but I knew those Lyme specific bands meant that I had been exposed to the bacteria.

    I used to sleep very little and wake up feeling like I had been run over by a truck. I no longer feel that way.

    I traveled to see a Lyme literate Dr who followed ILADS guidelines. We had to pay out of pocket since insurance only pays for short term treatment, which may be effective in some cases where a Lyme infection is early and has not spread throughout the body.

    I no longer have the awful fatigue, brain fog, insomnia and some other symptoms. Some pain resolved (especially the unbearable feeling of a drill going through the base of my skull and coming out my mouth) and I still deal with some pain because I was misdiagnosed and untreated for so long.

    I am going to post several links that you can read. Feel free to ask questions.

    http://www.ilads.org/lyme/about-lyme.php

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

    http://www.lymepa.org/Basics_7th_Edition_2017.pdf

    https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/

    I wish you all the best and hope you will come back here often.
    Last edited: Oct 10, 2017