How bad is bad

How bad are people on their bad days??..I am worried so many people seem to be able to work, function, take trips etc…my bad days render me bed bound…I feel so ill and exhausted with lots of neuro symptoms along with the dizziness…a good day means a bit more energy and I’m able to take a few walks but even on my best days I couldn’t contemplate travel or commuting etc…anyone else in a similar way?? Thank u…just worried I am so incapacitated… :?

we’re all bed bound on our bad days. Also, don’t compare yourself, it’ll only make you feel more worried. Know that you are you and your body is only yours. Only you know how you feel, and react to drugs and what helps you. xx

I am like you describe during my bad times. Bad times are bed bound or just resting and doing very little. Good times are doing normal activities with milder symptoms trying to ignore them but they are still there to some extent all the time. However, I can’t commit to regular things like a job or other commitments and I don’t really like to plan things more than a day ahead as never sure how I will feel. How are the anitbiotics going Lizzie? xx

Bad day at work, usually involves some crying (not in front of the kids)…bad day at home, typically include lots of bedtime (exhausted). So true, this always lingers at some level. Yesterday was a real bad day and I did nothing all day but rest in bed. This morning I knew it’d be a good day the moment I opened my eyes, so I spent the morning gardening and then went to the movies and early dinner with mom. I’ve definitely come to cherish days like this like never before!

p.s. The turn in the weather might have been a trigger-huge difference between a sunny blue sky on Friday and a totally overcast gray day on Saturday!

Hi, I am still off work. Have been since mid January. As a teacher I couldn’t possibly do the job with this! I definitely have seen a big improvement since being on meds but still not up to teaching a class!I am planning on getting back to work as soon as I can but just don’t feel I’m settled enough just yet. I also am avoiding making plans as I don’t know how I’m going to feel. It is all still a little too up and down for my liking, life is not really back to normal yet.

Kathy x x

Hi DL,

I don’t have bad days where I cannot get up. That would have been years ago for me, mainly in the early days of this – in the post VN days – I was not able to do much and was stuck at home 24/7. That went on for months. But, for me, migraine treatment (lifestyle plus meds) has managed it quite well.

Sorry to hear you are having such bad days. :frowning:

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How bad are people on their bad days??..I am worried so many people seem to be able to work, function, take trips etc…my bad days render me bed bound…I feel so ill and exhausted with lots of neuro symptoms along with the dizziness…a good day means a bit more energy and I’m able to take a few walks but even on my best days I couldn’t contemplate travel or commuting etc…anyone else in a similar way?? Thank u…just worried I am so incapacitated… :?

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Hi Lizzie,
My really bad days would be pretty much as you describe, and I’ve also had those days for months on end. And I’m sorry to hear you’re so incapacitated :frowning: I’m doing somewhat okay right now in terms of my dizziness (just by luck, I think) and have been able to do most, but not all, of my daily activities. But I still fear the really bad days, and I feel like I have a long way to go before I get to a stage like Scott has…

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Hi DL,

I don’t have bad days where I cannot get up. That would have been years ago for me, mainly in the early days of this – in the post VN days – I was not able to do much and was stuck at home 24/7. That went on for months. But, for me, migraine treatment (lifestyle plus meds) has managed it quite well.

Sorry to hear you are having such bad days. :frowning:

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Hi Scott,
I’m really jealous :smiley: But I’m also really glad for you, knowing full well what a nightmare it is to go through months of not being able to do much. How long did it take for you to get to that stage of good management? And what would you say was the one thing that made the most positive difference (maybe it’s unfair to force you to have to decide on one, but I’m curious, sorry!)? Thanks a bunch!

Thanks all. Its made me feel better to hear that! Even tho I’m sorry u all suffer so much. I just seem to be v unstable…I go from v good days to horrendous ones with no rhyme or reason…yuk. Anyway, here’s hoping for better times soon! Xx

Hi DL,

There were three things in this decade long (will be exactly 10 years on 30 Aug) adventure of research, forums plus trial and error that got me here:

  1. Drugs – Cipramil to bring me down from the ledge in 2004, stop the heavy duty serious shit making me want to die. And drugs now to keep my head screwed on straight (Paxil).

  2. Realising then accepting that I was a migraineur (took about 2.5 years) and then really putting lifestyle management into practice – e.g. learning what my triggers were which was a very long process and continues to be.

  3. More recently, fully understanding how my neck contributes to the migraine misery and how to manage that. I had it partially solved but not nearly enough and there was a whole other element to it I had missed until late last year. I never fully understood what trigger points were and how they can really cause such massive problems in the neck (referring pain to the head, triggering migraine, causing neurological disturbance).

We’re all different of course and unfortunately one fix doesn’t work for everyone. I wish it was that easy. :?

Thanks Scott…I appreciate that. I just feel caught in such a head f%ck over the lyme vs. migraine diagnosis…on one hand I know i got a tick bite, I have these positive tests (people on Lyme forums saying they’ve never seen such positive bloods, Dr O agreeing etc…) then my family history of migraine, Dr S saying I have both…it’s a bloody nightmare and all the info and opinions swirling around, it’s impossible to see the wood for the trees. I hope I am not unlucky enough to have MAV/migraine variant AND neurological Lyme symptoms but it seems likely…I guess I’ll push on with the antibiotics for a few more months and then re-assess…none of the migraien interventions over the past 13 years and believe me I’ve tried ALOT have made any dent in my symptoms…I feel I have had some better times on the antibitoics but who knows…anyway, thanks for the info…it’s reassuring to hear how you got a handle on it. x

What other drugs have u tried lizzie? It sounds like you are overwhelmed just like I am bc I am being treated for lyme and mav now also. not sure if u are on mav meds now but if i were u (and this is what i am doing) I am focusing now on treating the lyme first and then after that trial more mav meds. how long have u been on the antibiotics for now? do u still feel u are improving? also like someone else said try not to compare urself to other people- we all have very different symptoms and degrees of disability from this. some on here have very mild symptoms that are more of annoyance than anything, and others can barely make it to the bathroom and are housebound. Good luck with the antibiotics and let us know what happens!

scott u should write your own success story on the site!!!

Same as Scott.
I have wery few days were I can not get up.
I have alot of magraine-headaces now, but with triptans and a nap, I can do the most needed anyway.
I have been ill for almost 3 years now. I still feel symptoms every day, and my life is nothing like it was. But my bad days are not bedbound (although I would like to stay in bed on my bad days, but it is possible to get up).

Hope you will get there to :slight_smile:

Thanks a lot Scott for your reply about what helped you get to where you are, and again I’m glad you’ve gotten to that stage.

You’re right that it’s different for everyone…I’m still trying to find out what works in my case, but I realize that process won’t happen overnight.

Line: I’m also glad to hear you’re at the same stage as Scott.

DizzieLizzie: Here’s to hoping that things improve for you soon. I’m crossing my fingers for you!