Upon wakening this morning I awoke to bad joint pain.
And my knees especially are bad.
Feel like I am in a nightmare. Oh well! Can't wait for my LLMD appt. Nov. 18! Feels like I am waiting forever!
Thanks for listening! Again!!
Posts: 70 | From NJ | Registered: Sep 2010
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
I use to get the Jello legs.
I still have different symptoms all of the time. Although they have gotten much better.
With proper treatment you can get better!!
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
I'm in treatment and have this on and off to.
Just yesterday the jello feeling in my legs again.
But I went and bought 3lb weights to velcro on my ankles to try and fight it. They are on my ankles right now.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
I too get the same, was much worse but after a year I can see improvement, some days are without the weak legs but something else will usually take its place. My 14 year old son has the peripheal neuropathy as well they [neurologist] thinks he has cmt charkot marie tooth basicaly a muscle wasting. He has grown about 6" in the last 6 months and noticed his knees point inwards. I will be taking him to an orthopedic, we'll see what he says but I know the lyme disease is definatley involved. I remember our 1st LLMD dc. appt it was like waiting for Christmas as a kid. hang in there Blessings today tommorrow & all the days to come.
Posts: 443 | From The North Star | Registered: Jan 2010
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I get the "jello legs" too. Actually I remembering saying man my legs feel like jello, they just feel like they don't want to work...way in the beginning of all this.
posted
littlebit27, that is exactly how mine started too and I said the exact same thing. LD is blowing my mind, it seems that I always have a new question or new symptom.
I just started my second cycle of treatment and I thought it would be easier but I already had to skip a day of meds. It took me 3 days to get over the meds I took on Wed. It was rougher than my first cycle of treatment!
I have no idea "why" I get "jello-legs", but just know that you are not alone!
Hope your feeling better soon!
Posts: 29 | From North Carolina | Registered: Jul 2010
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posted
Yes summer this is very typical, don't be scared!
Keep track of this symptom. Write it down, and it will probably happen again (maybe at a certain interval) so you can keep up with the pattern.
Mine used to happen every four weeks (typical-ish lyme pattern) and now it happens every two weeks, so I'm not too scared anymore when I wake up and have trouble walkng, I know it'll only be a couple days and then I'll be "okay" again
In my case, I get lower back pain, and then around the same time is when I get neurological leg weakness...it's very typical Lyme, from what I know. Appears to be caused by inflammation of the spine.
Good luck on your appointment, glad you found us
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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quote:Originally posted by little_olive: Keep track of this symptom. Write it down, and it will probably happen again (maybe at a certain interval) so you can keep up with the pattern.
Mine used to happen every four weeks (typical-ish lyme pattern) and now it happens every two weeks, so I'm not too scared anymore when I wake up and have trouble walkng, I know it'll only be a couple days and then I'll be "okay" again
Completely agree with little_olive. I keep a "symptoms" calendar next to my bed...in each day's 1 1/2 inch little square, I use a fine-point Sharpie marker to scribble whatever notes come to mind about that day's symptoms. Tracking can be very helpful: for the reasons little_olive described, and others. (For one, it's the only way I can make heads or tails out of "how I've been doing"/how I responded to a new treatment variable, when I'm in my doctor's appts!)
Summer, you wrote: "Do you all feel like everyday is different? Never know what to expect when I wake up." Yes! You're right. That's exactly what it's like for me, too. It's especially difficult if you don't have a good idea yet of what your "normal" array of Lyme symptoms consist of. And the normal response to having a weird, scary new symptom come up from out of the blue is, "Something is very, very wrong here!" That's how any sane, relatively healthy person would react, right?? So getting this disease asks a lot of us. Bravery, patience, flexibility, self-awareness. A sense of perspective. It also cultivates these things in us, too...
I'm glad you've already got a funny name for your "weak legs" symptom! Best of luck on your LLMD appt-- devin
Posts: 2 | From san francisco, ca | Registered: Jul 2010
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