Can I have a pity party for a second?

[fightingmom]

Surprisingly, this has nothing to do with DS - knock on wood, we are doing pretty good. This is just a big vent about how crappy I feel and frustrated I am with my lack of energy levels, fatigue and pain right now. I had surgery a month ago, prior to that I had been on 3 weeks of high dose steroids to ward off a severe allergic reaction that landed me in the ER with open blisters and extreme swelling on my scalp after getting my hair dyed. Most recently I tested positive for band 34 lyme and mycoplasma. I don't know if it's the steroids that fed the lyme, or the myco, or the recovery from surgery (but really, after a few days, I felt fine from that) but every day I get tired earlier in the day and each day I have more aches and pains and my work is suffering, my school work is starting to fall (and I have been holding a 3.91 gpa until now).

 

I just feel like I'm slowly dying (I know I'm not dying, but it FEELS like it) and after 15 years worth of surgeries and illness and bullsh*t, I'm losing steam and even making dinner or going to the grocery store seems like a HUGE chore that I have to put great effort into pushing myself to do. Even sending a text message or responding to an email is too much effort at times.

 

Is this normal for lyme or myco, or should I be looking into something besides this?

 

Mornings are the best, besides it taking a while for my feet to feel better, not sure what that is, arthritis? I wake up and my feet ache SO bad, hurts to walk down the stairs to kitchen, but after an hour or so, it's gone. I usually feel okay until about noon and then I gradually start feeling more and more like crap.

 

Okay, pity party over. I'm just sick and tired of being sick and tired and I knew you guys would get it.

Edited April 18, 2012 by fightingmom

[LNN]

I think there are 3-4 moms on the lyme forum who'd tell you they felt the same way. The feet pain is a symptom of one of the co-infections - babesia maybe? Can't recall. But if you post this on the lyme forum, you'll get lots of feedback. I'm so sorry you're getting slammed. My arms aren't long enough but sending you much sympathy and cyberhugs.

[fightingmom]

Thank you. You are right, I probably should have posted this on the lyme forum. I thought about it, but truth be told, I didn't want my first post over there to be a big crying complain fest. I'm sure there are several people on this forum that are on that one, too. I just didn't want to post there and come across like some kind of hypochondriac complaining of so much. I am usually really tough, rarely take pain meds after surgery, delivered my son with NO drugs...I have a high pain tolerance...but something has just beaten me down to the ground.

[tpotter]

Thank you. You are right, I probably should have posted this on the lyme forum. I thought about it, but truth be told, I didn't want my first post over there to be a big crying complain fest. I'm sure there are several people on this forum that are on that one, too. I just didn't want to post there and come across like some kind of hypochondriac complaining of so much. I am usually really tough, rarely take pain meds after surgery, delivered my son with NO drugs...I have a high pain tolerance...but something has just beaten me down to the ground.

 

 

Too much complaining??? Us???? That's what we're for (and I speak as a lymie, as well )

[LNN]

I rarely wine anymore but I'll bring the cheese

(FWIW - I think 90% or more of the moms on the lyme forum come from or are still on the Pandas forum - we get it)

[fightingmom]

You are too funny.

I miss a good glass of wine (the real kind, not my whine) -- the last year or two though, I haven't been able to tolerate it very well. Even just a glass of wine makes me feel hungover. It's weird.

[butterflymom]

=

Edited October 5, 2015 by tampicc

[SSS]

I'm sorry, you have been through a lot :-(

Are you saying you hold a job outside the home, also go to school, and have children ill? And yourself?

Man almighty, that is a lot.

 

All I can really offer is that yes, chronic fatigue has been a large part of my Lyme disease. Before it started progressing in me, I was a business executive in an extremely busy and stressful place- often on the phone from 7 am to 7 pm, I exercised regularly, and a Mom to 1 child (now 14). I was social, had some close IRL girlfriends.

Over the years, looking back, I see how I started completely simplifying my life- quit my job 5 years back, I got anti-social, lost contacts- fun was something I couldn't seem to do-

I didn't really want to go anywhere.

I blamed it all on myself, I was a failure somehow, weak, getting old, lazy, not realizing I was plainly utterly exhausted ALL the time.

And of course I had no clue I had chronic Lyme and Bartonella.

You might want to have a full thyroid panel run, make sure all is okay there, B-12 and solid vitamins help, but lastly...

If it is infection driven, like mine, it won't get better unless treated properly.

 

Hang in there, sending you good thoughts---I understand.

[colleendonny]

Vent anytime!

I feel as if I'm always the one here asking for advice/ input, and I don't have as much to offer.

But vent away. We all need to get it off of our chest

[fightingmom]

fightingmom, I have read many times that painful feet in the morning is a symptom of Bartonella, so look into that one. And are you taking your B vitamins, and maybe some zinc too? These nutrients were a miracle for me when I was really down, and anxious with the stress of PANDAS, and also recovering from my own surgery. Also the anxiety of constantly researching online can be very great. Pace yourself. Pick a direction to go in, and try to do something for yourself. Thinking of you.

 

I started taking zinc a week ago when I started my son on it. I normally take a raw b complex but ran out a week or two ago and need to order more. Thanks for that reminder. I'm typically not a very anxious person, in times when my son is refusing to go to the doctor before we need to leave, or he's screaming outside my door...yeah...lol, but otherwise, I'm pretty laid back. The researching actually calms me, I have to know the ins and outs of things and the "Why?" behind everything. I 've always been very interested in science and despite being plagued by it all, I find every bit of this stuff fascinating. I have an appt with LLMD on May 11th. Had some more labs done this morning for that. That's the best I can do right now, but damn, I'm worn out. Just plain worn out.

 

Tomorrow is a week of peace in the house though. Not sure if it's the zinc, niacin, vitamin D or zithromax...but I've got my kid back this week. Woo hoo!

[coco]

fightingmom, I have read many times that painful feet in the morning is a symptom of Bartonella, so look into that one. And are you taking your B vitamins, and maybe some zinc too? These nutrients were a miracle for me when I was really down, and anxious with the stress of PANDAS, and also recovering from my own surgery. Also the anxiety of constantly researching online can be very great. Pace yourself. Pick a direction to go in, and try to do something for yourself. Thinking of you.

 

I started taking zinc a week ago when I started my son on it. I normally take a raw b complex but ran out a week or two ago and need to order more. Thanks for that reminder. I'm typically not a very anxious person, in times when my son is refusing to go to the doctor before we need to leave, or he's screaming outside my door...yeah...lol, but otherwise, I'm pretty laid back. The researching actually calms me, I have to know the ins and outs of things and the "Why?" behind everything. I 've always been very interested in science and despite being plagued by it all, I find every bit of this stuff fascinating. I have an appt with LLMD on May 11th. Had some more labs done this morning for that. That's the best I can do right now, but damn, I'm worn out. Just plain worn out.

 

Tomorrow is a week of peace in the house though. Not sure if it's the zinc, niacin, vitamin D or zithromax...but I've got my kid back this week. Woo hoo!

 

I am so sorry you are feeling like crap! We are all there with you, sista! One the that really helped me to my amazement was/is acupuncture. Battling Lyme is h--l, and fighting for your child's health on top of regular life is a challenge under the best of circumstances. I find acupuncture to be very restorative and the solace and quiet time just for me a necessity to recharge. Try some adrenal support products and I bet your amino acids are low. Those sups helped me out of the hole.😉 good luck at your appt.

[fightingmom]

I'm sorry, you have been through a lot :-(Are you saying you hold a job outside the home, also go to school, and have children ill? And yourself?Man almighty, that is a lot.All I can really offer is that yes, chronic fatigue has been a large part of my Lyme disease. Before it started progressing in me, I was a business executive in an extremely busy and stressful place- often on the phone from 7 am to 7 pm, I exercised regularly, and a Mom to 1 child (now 14). I was social, had some close IRL girlfriends.Over the years, looking back, I see how I started completely simplifying my life- quit my job 5 years back, I got anti-social, lost contacts- fun was something I couldn't seem to do-I didn't really want to go anywhere.I blamed it all on myself, I was a failure somehow, weak, getting old, lazy, not realizing I was plainly utterly exhausted ALL the time.And of course I had no clue I had chronic Lyme and Bartonella.You might want to have a full thyroid panel run, make sure all is okay there, B-12 and solid vitamins help, but lastly...If it is infection driven, like mine, it won't get better unless treated properly.Hang in there, sending you good thoughts---I understand.

 

I actually work mostly from home, but I run my own business the last 6-7 years and it's more than full time. Make my own products, ship the items, manage a website, do the book keeping, ordering, customer service, etc. --- then I go to school full time 4 classes, and then I have the sicko kiddo and myself. It's a lot, but until this surgery I as able to manage it. I know I keep referencing the surgery, but it's really not the problem. It just seems that having it knocked the wind out me, I just haven't been strong enough to hack anything else since. I was in a lot of pain before the surgery and feel relieved that all of that stuff is gone (my ovary was attached to my intestines by adhesions, this was my 3rd surgery in 15 months for endometriosis, fibroids, ovarian cysts, etc.). After about a week I noticed I was getting tired, but now it's just gotten worse each day. No signs of infection or anything like that, and I'm on Augmentin for a sinus infection, so that should have taken care of it if there was any...just aches, pains and exhaustion.

 

I have missed quite a few holidays with the family in the last year due to being sick and truth be told I was relieved. I also have become anti-social, not because I don't want to, it's just too much effort. Sometimes just getting dressed up and putting on make up seems like too much work. It's really not like me either, I'm a pretty happy person, I laugh all the time, I WANT to be social, but damn it if not just too tired.

 

Oh, and I have this twitching that is getting REALLY bad. At first it started out to be quirkly and once every few days, then once a day or so, now it's all day long several times and hour. Twitching on my face, in my hand, my thigh, my back and even my side near my ribs. I have read that twitches and spasms, etc. are Lyme related, and they are not painful, but man they are annoying.

 

Vent anytime! I feel as if I'm always the one here asking for advice/ input, and I don't have as much to offer.But vent away. We all need to get it off of our chest

 

Thanks, Colleen. It really did feel better just to get that out. I try not to complain to my hubby too much, I feel bad especially with the drama my son's illness causes in the house. He came home tonight with my favorite dinner. I hadn't even said a word about how I was feeling, didn't even mention dinner, he just brought it home. I guess he can tell I'm pretty worn down, it was a really nice surprise though. Needless to say, I'm trying to suck it up and not cry about not feeling good, so it felt good to have a little pity party for a few.

Edited April 18, 2012 by fightingmom

[lfran]

Foot pain in the morning is often a sign of Bartonella, which is a very common lyme co-infection. Often treated with rifampin- but make sure you monitor liver function frequently if on rifampin.

 

Gruelling fatigue can be low thyroid, as well as many other things. If low thyroid, it's pretty easy to treat. I felt completely better within a week of starting thyroid treatment (like an epiphany, really), although my doc told me it shouldn't have happened quite that fast. You don't even have to be super hypothyroid for the fatigue to hit.I fell asleep in my dinner plate almost every night before it was treated.

 

Hope you feel better soon!

 

 

I'm sorry, you have been through a lot :-(Are you saying you hold a job outside the home, also go to school, and have children ill? And yourself?Man almighty, that is a lot.All I can really offer is that yes, chronic fatigue has been a large part of my Lyme disease. Before it started progressing in me, I was a business executive in an extremely busy and stressful place- often on the phone from 7 am to 7 pm, I exercised regularly, and a Mom to 1 child (now 14). I was social, had some close IRL girlfriends.Over the years, looking back, I see how I started completely simplifying my life- quit my job 5 years back, I got anti-social, lost contacts- fun was something I couldn't seem to do-I didn't really want to go anywhere.I blamed it all on myself, I was a failure somehow, weak, getting old, lazy, not realizing I was plainly utterly exhausted ALL the time.And of course I had no clue I had chronic Lyme and Bartonella.You might want to have a full thyroid panel run, make sure all is okay there, B-12 and solid vitamins help, but lastly...If it is infection driven, like mine, it won't get better unless treated properly.Hang in there, sending you good thoughts---I understand.

 

I actually work mostly from home, but I run my own business the last 6-7 years and it's more than full time. Make my own products, ship the items, manage a website, do the book keeping, ordering, customer service, etc. --- then I go to school full time 4 classes, and then I have the sicko kiddo and myself. It's a lot, but until this surgery I as able to manage it. I know I keep referencing the surgery, but it's really not the problem. It just seems that having it knocked the wind out me, I just haven't been strong enough to hack anything else since. I was in a lot of pain before the surgery and feel relieved that all of that stuff is gone (my ovary was attached to my intestines by adhesions, this was my 3rd surgery in 15 months for endometriosis, fibroids, ovarian cysts, etc.). After about a week I noticed I was getting tired, but now it's just gotten worse each day. No signs of infection or anything like that, and I'm on Augmentin for a sinus infection, so that should have taken care of it if there was any...just aches, pains and exhaustion.

 

I have missed quite a few holidays with the family in the last year due to being sick and truth be told I was relieved. I also have become anti-social, not because I don't want to, it's just too much effort. Sometimes just getting dressed up and putting on make up seems like too much work. It's really not like me either, I'm a pretty happy person, I laugh all the time, I WANT to be social, but damn it if not just too tired.

 

Oh, and I have this twitching that is getting REALLY bad. At first it started out to be quirkly and once every few days, then once a day or so, now it's all day long several times and hour. Twitching on my face, in my hand, my thigh, my back and even my side near my ribs. I have read that twitches and spasms, etc. are Lyme related, and they are not painful, but man they are annoying.

 

Vent anytime! I feel as if I'm always the one here asking for advice/ input, and I don't have as much to offer.But vent away. We all need to get it off of our chest

 

Thanks, Colleen. It really did feel better just to get that out. I try not to complain to my hubby too much, I feel bad especially with the drama my son's illness causes in the house. He came home tonight with my favorite dinner. I hadn't even said a word about how I was feeling, didn't even mention dinner, he just brought it home. I guess he can tell I'm pretty worn down, it was a really nice surprise though. Needless to say, I'm trying to suck it up and not cry about not feeling good, so it felt good to have a little pity party for a few.