Does anyone experience these rapid declines out of nowhere? Yesterday evening, my neuropathy was creeping up my ankles, really burning and my elbow is killing me. Then, the computer monitor seemed to swirl - I was getting vertigo. Then, I was nauseous and exhausted. My legs felt 100lbs heavier. I went home early from work, in tears, and lay on the couch in the fetal position for about half an hour, all the while twitching, somewhat violently. No sleep, just staring at the back of the couch and feeling like poo.
So my question is: the neuropathy cues me. If the neuropathy creeps up my limbs and roams around (had it on my crown of my scalp and on my back as well), then I get sick, it has to be a neurological meltdown of sorts? I don't have nausea and extreme fatigue for any other reason. I took my temp, which usually runs in the 97 degree area and it was 98.1. Not a fever, right? I basically felt like a nasty flu was hitting me.
Today, I feel the same, only slightly better. I feel well enough to get through the day, but everyone can see that I'm sick. They say, "you don't look well" and my response is, "I'm not, really." I can't fake it and smile today, but my co-workers are great and they are being very understanding.
As they day goes on, I feel more nauseous. And no, no pregnancy here:)
I do. I can feel great for a day or two with minor symptoms and then it's like a big crashing wave of malaise that descends upon me. I tell people it's like getting the flu and it just nails you. My symptoms tend to be more cardiac-related instead of the neurological stuff and I'll start flaring with chest pain, heart flutters, increased pulse, and shortness of breath.
It's frustrating. Some days I feel I can be myself and do a bunch of activites and then other days I worry that my heart is going to freak out from any type of exertion, not to mention my body just being fatigued.
My body also sends cues for when a relapse/herx/"bad day" (often hard to distinguish these) is going to hit. As you write, sometimes the early signals will involve a symptom spreading out over a larger area, such as paresthesias creeping high up my limbs.
It can happen anytime. I can wake up and just know, or I can be having a relatively good day and suddenly feel a wave coming over me. One day earlier this spring I was feeling pretty good, and was out at the mall. I was looking at some hats when I began to have the sensation that cold water was running down my leg. By that evening, I was down and out.
I didn't have these spells before my treatment began. I had gotten to a point of constant illness with a very slow, insidious decline. So while it is devastating to sense these periods of worsened symptoms, I do consider it a good sign and hope with time, the good days will start to outnumber the bad.
It is frustrating, because not only does this cycling confuse those around us as gorbybelle notes, but it also causes me to doubt myself. I constantly question if I am or ever really was that sick, if some days I can feel and/or appear to be functioning so well. Also, I can rarely neatly correlate my ups and downs. Randomness or too many variables always seem to confuse the matter.
So I don't know when it will hit, how bad it will be, or how long it will last. I try my best to stay committed to general good practices such as diet, sleep, and exercise, and I try to stay objective about my situation. Beyond that, I try to accept that a certain amount of this is out of my control.
YES! I feel this exact way. It is so frustrating and scary. Sometimes it really does make you think if you are going crazy! Now recently I try to keep my feelings to my self cause I'm sure my family is starting to think I'm crazy because of all my bizarre fluctuation sympotms. Those up and down spells are mind teasers and very hard... especially emotionally.
I have spend the past few days feeling really well. I really thought it may be gone....Then last night I noticed it creeping back. My shins started hurting and burning and my hads hurt. Went to bed and woke up with the numbness in my left leg and toes. This morning I'm back to square one again.
As Wonko said you begin to quesiton yourself ... "Was I ever Really that sick" when I am feeling well.... and "DID I ever Fell good?? ... when your sick. IT's a mind game for sure.
Hope, when this all hit me two months ago I felt the same way you do now. Like I had a bad case of flu (without fever,congestion,cough, etc..) I just felt sick. Weak. Completley out of it. I couldn't function. That was there for nearly a week and I thought I was dying. But I came out of it and haven't hit that hard again since. Thank god!!
Hang in there!! Atleast you got your answer....and now you can move forward!!
Sounds like it is "Lyme" normal to go through this. You know how they say it is the "mind games" that people have to conquer to get through a marathon - when their body is giving up, they have to keep going in their mind? I think that is us. I am functioning at least today. So, Wednesday was the worst day I hope. Thanks all - I have to run and will be posting this weekend!
I just posted a question this friday am. You described it totally. I guess it's just our immune system fitting off this bacteria. We all seem to be very intelligent people here and how this ***** the brain and physical GO out of us is probably what is our biggest stuggle that we aren't in control anymore but the lyme is. Hang in there I have talked to people who have beaten lyme disease and you can too :- ) I hope you have a great weekend.
Hope everyone has a relaxing, stress free, symptom free (as much as possible) weekend!!
I am not on meds at presant but may have to get them, my question is are your symptoms worse since being on the meds, is it the Doxy you talk about having side effects.. I have found most stuff prescribed to me for anything has some side effects..in other words would you still get all thses symptoms if you were either taking nothing or taking another form of antibiotic? I do get all the described in the poist one day I am fine next day I can wake up okay then a couple of hours later feel like Hell.I have also definatly through the years had remissions from it,My husband tolerates me thinks I am a hypochondriac ....
I've tried hard to track possible triggers for why some of my symptoms appear out of nowhere, just when I thought there was hope they would be away for much longer, even forever!
The only general trends I find is that a lack of sleep and greater stress are two things that make it more likely to get nailed. My neuro told me that people with neuro problems seem to do better by keeping a very regular routine: doing the same things at the same time, etc. every day. I follow this guidance and I think that also helps some on average. All of that said, I don't feel like I have much influence for controlling/predicting the "meltdowns".
I'm not on meds yet, but I did have a short course of doxy. I was on it about 6 days, then stopped when I realized I was going to get the Igenex labwork. During the time I was on it - I felt 10x worse! I learned of the Herxing phenomenon at that time. If I don't have Lyme, then somebody sure is playing a cruel trick because it seems like everything fits - minus the classic rash and arthritis with swelling.
I have always had to follow more of a routine. I try to stay up late on weekends and it just makes me feel horrible. It feels as if I have to tip toe through life, trying not to stir up the bee hive - and that really ticks (pardon the pun) me off!
I found out on Friday that I have lymes thru Western blot blood test and have been on Doxy since. I have to say I have symptoms like wheezing, shortness of breath and a cough I did not have prior to that. My leg pains were my main symptom as I never had the "rash". So I would have to say, yes, I feel worse since taking the meds. I am looking for a LLMD in my area to make sure I get the best treatment and meds.
I guess unless you have this hidious disease most wouldn't understand that frustrating pain we go through. I feel blessed mine symptoms are not as bad as some. I would like to thank everyone for this forum. It has really helped me.
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