Does anyone here ever get tired of feeling just plain old weird all the time.. I don't think I can take another day of it at times.. Just feeling that my body isn't quite right.. feel weak at times, out of it, heavy, weird in stores.. etc. etc. the list could go on endlessly! I guess I am just way out of balance! I wish there was a quick fix... Unfortunately I know there isn't.. but I'll keep working on it anyway! Just wanted to see if there was anyone else out there that feels this way more often than "normal"..whatever that is!
Stephanie
Posted by prismvision (Member # 9648) on :
YESYESYES!!!
I was just diagnosed last week after being sick for over 2 years and I RARELY feel normal....especially in stores...can barely work anymore. Right now my head feels like it is not even attached to my neck....and strange pressure...YUK!!!!!
Sorry we have to go through this... Starting treatment this week.
Heidi
Posted by AliG (Member # 9734) on :
Hi Stephanie!
I hate to tell you this but that state of weird, I think is actually "normal" for someone with Lyme. Feeling "normal" is actually odd. At least for me anyway. Maybe it's my neuro stuff, maybe it's the Babs, maybe it's the die-off toxins??
I hear that with Tx there's hope of feeling unafflicted "normal" again. That's what is keeping me going right now.
Oh my goodness! That's just dreadful! I hope someone can come along and give you better input than me. I'm having Lyme induced "PMS" right now and should really keep my depressive thoughts to myself. Sorry!
I hope you're feeling better soon!
Ali
Posted by ChrisBtheLymie (Member # 8916) on :
I never feel normal either - I haven't felt absolutely normal for over 3 years. I just always feel foggy, can't concentrate, sometimes everything feels unreal, like It's all just a dream. I can't go into stores at all - I usually have terrible panic attacks and I hate the flickering lights, the people, etc.
Mine has got better slightly since starting supplements and antibiotics.
Posted by sometimesdilly (Member # 9982) on :
Hi Stephanie-
Nope,there sure isn't any quick fix. Actually, for many of us it is probably a long haul.
I'm gone just a wee bit down that road, but I can share a couple thoughts with you and hope they help.
1- You're not crazy or weird and you're not alone in how you feel. Your body and mind are under substantial assault and how you feel/think is in good part a byproduct of that assault.
2- From what I've experienced, genuinely comign to terms with the fact that you have lyme (or inmany cases, lyme plus co-infections) is a long term process in its own right.
I think that's true partly because of the brain fog, exhaustion, etc. that so many of us have, but i think as well because it is difficult to accept all the limitations that this disease imposes. I know ther is very little inmy life that has NOT been up-ended, and for an indefinite lenght of time.
That is DIFFICULT!
So, be kind to yourself! Trust your body when it tells you to rest! Eat well! Take care of yourself in every way you know how!
And maybe, if you can, save some time in the day for when you can do something so silly or peaceful or whatever else that you forget how weird you are feeling for a few minutes .
One thing that always works for me is to have one of my kitty cats on my lap purring like crazy while I close my eyes and listen to music or to the wind blowing outside.
Hugs to you-
Dilly
Posted by FaithHope (Member # 1487) on :
Thanks to all of your for your replies... sometimes I just want to cry and give in.. it would be easier to just do that... I have two younger children and I do not have any down time or time to relax... and when I feel so not good alot of the time I know I do not have patience... its just no fun.. I've been doing this now for over 9 years.. I must say I've learned alot and can help myself sometimes and I am not nearly as awful as I had been.. but sometimes I wonder how anyone can feel so darn weird and yucky still be walking around!! But I do want to be here for my kids so I have to keep going and keep trying...
Thanks for the hug Dilly, I need it! I don't like to have limitations! It really bothers me.. I like to be able to go running and get things done at home and not feel like death doing it! I guess anyone is like that.. not wanting to face up to the fact that they have limitations.. at least for now..... it is comforting to know that I am not alone.. right here in my little world in PA it feels that way though at times.. I look at everyone else and am jealous of their health, energy, etc. I know I probably look normal to them.. but as you know we certainly don't feel normal.
Thanks again... I hope your treatment goes well Heidi, and don't worry about your post Ali, I know what you mean Thanks to you to Chris and Dilly! I'll say a prayer for you all for healing.
Hugs to you all!
Posted by LC (Member # 7070) on :
Hi Stephanie, I know how horrible it is to feel "weird" all the time. I certainly did especially during the almost two years I suffered without diagnosis. These feelings were almost worse than any pain or fatigue.
I was on the verge of a panic attack at all times.
Anxiety...so high. ANY stimulus be it interactions with people or going to a restaurant or whatever would illicit an exaggerated response from my nervous system.
I had a lump in my throat and couldn't swallow, anxiety made it worse.
I felt set back inside myself an inch or two, and everything seemed so unreal.
I was locked inside myself, couldn't stop thinking about my horrible symptoms, I looked forward to nothing.
Now after two plus years in treatment....I am so much better.
Panic attacks...gone. Anxiety...minimal to non-existent.
I can handle stores and the lights. (although smells still get me...been to Bed, Bath and Beyond lately?....ugh).
A few years ago I struggled my way through a reading at my friends small wedding in front of 10 people on the verge of panic. This past summer I was asked to be the featured speaker at a company wide luncheon. I did it no problem.
I am starting to socialize again, was just offered a promotion, completed a continuing education certificate. All with Lyme.
I am not well yet, but getting there.
I wanted to offer you a little hope, that it will get better! Things that helped me most with my nervous system related symptoms I believe were Methylcobablomin (B-12) shots, Bicilling shots, and detox. And Babs tx.
LC
Posted by trueblue (Member # 7348) on :
Hi Stephanie ~ Thanks for expressing what's been in my head and I couldn't get out. Thie paragraph about limitations, especially. I waver between accepting them and railing(sp?) against them.
I've been in this place a bunch, lately.
I recently spent some time with an old friend (I hadn't seen in far too long). It quickly became even more apparent to me I was very very different. (I also know the regular me is in here.)
I was wondering just yesterday what it would be like to just do something and not have to fight so hard to do it.
Ok, I'm obviously in the weepy/mushy part of my cycle but wanted you to know I'm right there with you.
I hope this soon gets better for all of us. I know it will; I just don't know when.
Many many hugs, trueblue
edit: I type really slow and hadn't seen LC's post. Thank you for the ray of hope, LC! Posted by FaithHope (Member # 1487) on :
Thank you LC for your email of encouragement... I know what you mean about being on the verge of a panic attack.. sometimes I don't even want to go anywhere, I like it in my safe little home... sometimes, like you said, just interactions with other people loudly talking to you or something similiar would make me jumpy and feeling weird... I can't even explain it, but I know you know what I mean... I think I am my own worse enemy, esp. when it comes to letting my mind go where it shouldn't... its a vicious cycle.
It is encouraging to hear that you are making strides in getting better.. I was diagnosed finally with Babesia (is that what you mean when you say babs tx?).. and treated with Mepron and Zithromax a number of years back.. I had also been doing some B12 shots at home on my own, I should ask my lyme doctor about that again when I see him in October.....
Trueblue, thanks for your post also... sometimes it just helps to know that you are not alone in this and to talk to others going through it.. I don't think that you can really know how it feels or even imagine until you are going through it yourself. (and I wouldn't want anyone to have to) I'm having a moment also, I am not always quite this down, but its a bad time for me right now.. just got an appt. card from the cardiologist for this year (I go every year because of the lyme).. and its just another reminder if you know what I mean! I'll keep you guys in prayer also.. thanks for your help! Posted by LC (Member # 7070) on :
Stephanie, Yes I meant Babesia treatment. I did Mepron plus Ketek for about 8 months. It really helped.
About the B12 shots, make sure you get the kind that do not have additives. You might want to consider getting them from a compounding pharmacy. I think the kind from a regular pharmacy have aluminum. You don't need any extra toxins!
Methylcobalomin shots have been discussed here at length. Do a search for these.
Detox helped my nervous system a lot too. Lots of info. here about that as well. Worth looking in to.
Rocovering takes time, and some trial and error. Sometimes you have months with no progress. Then you have to consider switching things up, or looking for other issues that have not been addressed. My progess has been slow, but substantial. I am about 80% recovered. LC.
Posted by FaithHope (Member # 1487) on :
Thanks LC for your information.. I do go to a compounding pharmacy for some other items.. I can check into the B12 there also... Did you ever have heart involvement with your lyme.. pain in that area...or irregular beats, etc.? Just curious if that went away for you also..I seem to get pain in the heart/left shoulder area on and off which can be frightening... have gotten it checked several times.. gone to the emergency room, etc. and they don't find anything.. it feels like heart, but I guess it could be inflammation of the chest wall?
Are you from Eastern PA? Just curious, I see you are from PA also..... Take care! Hope you have a good day.
Stephanie
Posted by Aniek (Member # 5374) on :
Stephanie,
I also recommend getting your amino acid levels tested. You can't process the B-12 without amino acids. It's also recommended to take folic acid with B-12.
Posted by LC (Member # 7070) on :
Stephanie- Yes I used to have chest pains and some heart palps.
They are gone as well. Very rarely I'll have a palp then it's gone.
My dr. has said those chest pains can be inflammation between the ribs, but seem like the heart.
I live in So. Chester county, not too far from where you are.
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Unfortunately I know there isn't.. but I'll keep working on it anyway! Just wanted to see if there was anyone else out there that feels this way more often than "normal"..whatever that is!![[Big Grin]](biggrin.gif)
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