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Is my Mystery Illness CFS?

Posted , 7 users are following.

charlile
charlile

Hi everyone! First of all, thanks for your time reading this post, it's much appreciated! I'm a 21 yr old female and I've been struggling with a "mysterious" illness for almost a year now. I'm beginning to suspect CFS. I tried to keep this short, but I don't think I was successful.

I've never been the most active or health conscious person, but no serious health concerns other than some hormone inbalences that run in the family.

The end of May, 2015, I took a short bike ride with some friends (Probably about a mile? Give or take.) to a local ice cream parlor. After I got off my bike, a wave of exhausted and the worst headache I think I've ever felt hit me. I tried to ignore it and just walk it off, but after we got inside I pretty quickly zoned out and collapsed. I didn't lose consciesness but I was close. I vomited violently (into a bucket) and then started to feel better, other than the headache. But after that my life just fell apart. I was exhausted all the time, and I started having balance issues, brain fog, chills, moter function problems (not being able to write was the biggest one), and weird zone out episodes. Blood tests came back clean. At the time I was working full time but had to keep calling off or leaving work cause I just couldn't handle anything. I was still sleeping 7-9 hrs a night, no problems falling asleep or sleeping through the night at all. It got so bad I had a few "episodes" where I started having trouble moving and breathing because it was just too much effort. I got pretty freaked out, of course, and quit my job, and moved back in with my parents because they live very close to Cleveland Clinic. 

But everything so far has come back clean as a whistle. MRIs, EKGs, blood tests, I've been tested for pretty much all the big stuff, and there is nothing to cause my symptoms. Over the summer I was pretty much bedridden. Just thinking about doing stuff would make me tired. I'd go days without eating because eating made me so tired and being hungry was easier. I developed more weird symptoms. My wrists started feeling like they were sprained randomly, and my knuckles and fingers would hurt. My shoulders and hips would ache too. No swelling. I started having weird vision problems, it would hurt to focus on anything far away or move my eyes too quickly. Reading made me motion sick. I started getting really bad muscle spasms as well, everywhere. I was still having brain fogs, and the zone out episodes were getting so bad my parents and doctors thought I might be having seizures. I did a five day stay at Cleveland Clinic's Epilepsy center hooked up to an EKG and Halter Monitor and under 24 hr video, but they didn't find anything. They put me on a seizure medication anyway, saying it would help with my headaches if nothing else. That was in October, and by then I was pretty fed up with doctors and tests and no answers, so I decided to break for the Holidays. And after a couple months of doing nothing I started to feel better. A lot of my symptoms went away and I was just left with the headaches and feeling more tired than usual. So I figured the medication was helping in SOME way so maybe I could start working again. I got a job at a little pet store part time in January. I work about 16-20 hrs a week, it's very low stress. I'd say moderate activity level? About the worst activity is lugging 30# bags of dog food short distances. But anyway, I was okay for maybe two weeks and then I started feeling that exhaustion again. All my symptoms came back and I started having to go home early, or let my co-workers do all the real work. 

So basically, does this sound like CFS? If it does, what's the best way to bring it up to my PCP? And does anyone have advice on dealing with an unsupportive parential figure who thinks everything can be solved with diet and exercise? 

0 likes, 3 replies

3 Replies

  • GeorgiaS
    GeorgiaS charlile

    Posted

    It sounds like ME, and also Fibromalgia, and luvaeaner mentioned Lyme disease so I think you need to persuade your doctor to refer you to an ME specialist.
  • bronwyn97278
    bronwyn97278 charlile

    Posted

    Hi Charlile;  I am wondering have you been seen and tested by a Rhuematologist?  These specialists are the best for any auto-immune disorders (which is what some feel CFS/Fibro etc are).  Also I agree that if you havn't been tested for Lyme Disease, then this also is a good idea, as the symptoms are also similar........as for trying to get your family and friends to understand, this can be Very hard to achieve......we all look ok on the outside, and many of us have been through the stigmatization of saying it's "all Psychological/Psychosomatic" etc.....but it actually is the other way around....the symptoms can be the cause of the depression, for as we continue on the Roller-Coaster of trying to find answers, and getting nowhere, we can get very down.....especially when it affects our work and social lives.........sometimes if your family/friends are really concerned, researching these conditions, with all of the symptoms etc, can give them Some Idea..................actually I was on Facebook a few weeks ago and someone had passed along a diagram of what our bodies look like from a 3D view......all of the muscles bright red, veins, ligaments etc all inflammed and marked in blue etc....it was quite impressive.......don't know if you can find this pic, but it certainly would be a help in describing how you are feeling if you have the "burning" pain that symbolizes Fibro???   As for CFS, you really can only rest when needed, not push yourself when working, and I have found that there are many vitamin supplements that help (like magnesium)....massages and physio help.....research and you will find many answers......(sorry for the ramble but there is so much about this/these conditions these days....but no real answers for treatment)......................good luck.....Bron
  • jackie00198
    jackie00198 charlile

    Posted

    Your symptoms sound very much like ME/CFS. There's an excellent website for information on this illness. Google the "Solve ME/CFS Initiative." You need to see a specialist. If you're still close to the Cleveland Clinic, that's probably a good place to start. This time, though, see an infectious disease doctor or rheumatologist at the clinic. The experience you describe of getting better, trying more activities, then relapsing is very typical of this illness. I've found the best way to inform others (including parents) about the illness is to let a respected, informed third party do it. For instance, the Cleveland Clinic might have information on a website. Or try the Mayo Clinic website. But in any case, your first priority should be getting a diagnosis from a specialist.
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