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ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
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Discussion in 'Lifestyle Management' started by LilacGardenia, Apr 18, 2012.

  1. LilacGardenia

    LilacGardenia

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    I only have 15 days until the semester and finals are over! :) It's been pretty hectic and I have literally been working non-stop with work, volunteer work, meetings, classes, projects, and doctor appointments. Tomorrow I have to present a 20 minute speech worth 30% of my grade for my anthropology seminar class, and I have all sorts of other big projects, exams, and assignments to do. In addition to all this, I'm getting my first major surgery right after finals week, and have 4 different doctors involved in it (I've literally not gone 3 days without a doctor appointment, it's kind of annoying.) I'm a little nervous because it's going to be 4 hours long and I've only ever been under anesthesia for like 20 minutes for a tonsillectomy and adenoidectomy. This upcoming surgery is to remove abnormal tissue--we're not sure if it's cancerous (I'm going for a test to determine that.) I'm hoping this surgery helps some of my issues--we're still not sure if all of this is ME/CFS, but given it hasn't been matched to anything else, my GP feels ME/CFS is the closest match.

    I've had a lot of bruising all over my body (does anyone get this?), fevers and night sweats/flashes, a deep ache in my bones (especially the joints), no appetite, my side and tummy is swollen, and I have been SOOOOO WEAK and tired. Today I literally felt like I couldn't walk. We already ruled out Leukemia and Lyme's disease, so I'm at a loss to what this could be. Has anyone else had these symptoms or cancer?

    After my surgery and recovery I'm hoping to take a bit of a break, but am going to work over the summer, do some light volunteering, and get through my math classes (I have like 4 months between Spring semester 2012 and Fall semester 2012, so all that will be stretched over those 4 months.) I'm still upset at my lack of ability to do what I want--I feel like I'm missing out on so much and not able to be as involved with my academic life as I'd like to be. I just wish I could know what's up with all of this... until then, I just keep holding on and trucking along.

    I hope all is well with everyone else or at least going a bit better than usual. :hug:
  2. L'engle

    L'engle moderate ME

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    That sounds very hectic and your symptoms are different from any I've had, apart from the severe exhaustion and cognitive stuff you mentioned elsewhere. I hope your surgery will be ok. Make sure you take plenty of time to rest afterwards.:hug:
  3. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Not sure where you are, but Lyme tests are not all good, so you might want to research that once school is over.

    GG

    PS Think of all the things that people who are worse off than you are, that helps me keep perspective!
  4. SickOfSickness

    SickOfSickness Senior Member

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    I hope surgery and your recovery go well.
  5. taniaaust1

    taniaaust1 Senior Member

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    Without headaches, insomina and so many of the other symptoms we usually get, I wouldnt be sure you do have ME/CFS. There is also usually post exercertional symptoms 24hrs or so, it may be shorter) after doing things, a worst flare up on the whole state

    We can get those symptoms but most of us have a lot more of them and I'd think there may be other illnesses in which have the symptoms you described (sorry I cant now think of anything other then leukemia which would match, my aunt had leukemia and it did have your symptoms).

    Dont give up on seeking another cause.

    Best luck with the surgery.
  6. LilacGardenia

    LilacGardenia

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    Thanks everyone! I wanted to update and say everything went well except there were some issues with the stitches not dissolving afterwards--several had to be taken out. I was under for 4 hours and had a bit of a bad reaction to the anesthesia and pain medication, but now everything is all good. :thumbsup:

    I did find out that it isn't ME/CFS, rather another dysautonomia-type thing.

    Thanks again and I hope everyone else is well! :hug:
    taniaaust1 and Merry like this.
  7. Ocean

    Ocean Senior Member

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    How were you diagnosed with that, how was ME/CFS ruled out? Just wondering...
  8. LilacGardenia

    LilacGardenia

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    Well, dysautonomia (failure of the autonomic nervous system) is an umbrella term that includes many different causes and diseases (ME/CFS bring one of them.) I feel like the current classification system is a bit fuzzy since we don't exactly know a cause for one type versus another or why they may be different. Just recently, scoliosis has been discovered to be caused by a failure of the autonomic nervous system (which is though to be inherited) and treatments have shifted from bracing and fusions (except in severe cases) to retraining the nervous system--it's been pretty successful!

    Anyways, my doctor said that ME/CFS becomes the diagnosis once everything else has been crossed off the list and if the patient's symptoms match that of ME/CFS. He's not an expert on the topic, though (that's just what he said about it based off his findings.)

    ME/CFS seems to be something acquired as a result of some external thing interacting with people genetically susceptible to it. The symptoms are typically ongoing. I on the other had, can be perfectly normal one moment, then go several days with difficulties, or vice versa. When these things aren't bugging me, I have so much energy (I weight lift, bicycle on occasion, and recently started Yoga) I also am a full time college student (typically all A's), belong to 2 committees, and am a professional note taker at my university (I basically sell notes and study guides to people that struggle in that area or missed class--it sounds like a goofy job, but it actually exists.) :D LOL

    Since this has been going on for awhile (I was likely born with it) and have other signs of dysautonomia (like scoliosis) unsteady walking since I started walking (I wouldn't go on certain playground equipment because I had issues steadying myself, numbness/occasional discoloration in my extremities, super low BP, and I have weird responses to light and certain reflexes.)
    So yeah... hopefully studying the multitude of dysautonomia-related disease will help us understand and develop treatments for others. In the meantime, I still hang around here since 1. I have a lot of similar symptoms as people with ME/CFS, and 2. this is probably the best support group out there. Most others are dead (there's like less than 20 active members) or they're for a multitude of health issues, so your posts are constantly being buried by people posting threads about their baby's ingrown toenail, or their pet's allergies, then like 6 threads about dysautonomia related-stuff.
  9. Ocean

    Ocean Senior Member

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    I had no idea scoliosis was considered related to the autonomic nervous system. So interesting. Well if you don't have ME/CFS, that at least is great news. I think many have that plus dysautonomia, but better to just have one and not both.
  10. L'engle

    L'engle moderate ME

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    A lot of people here have dysautonomia as one of their diagnoses, from what I can recall. Seems like you belong here, one way or another! :cool:

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