runningshoe

My kids were 12, 10 and 7 when I was dx but I teach preschool so I know a bit about this issue. The best thing about the early years is they love to play on the floor and so you can lie down next to them and participate while letting your body rest. The best toys are blocks and play animals and such because they let kids use their imaginations. You got a lot of great ideas from some of the earlier posts. I think that the key to surviving a long day at home with little kids is to break things into chunks of time - breakfast, playing on the floor, tv break if you need it, snack on a picnic blanket, craft time, read a book, lunch, listen to book on tape (you can rest or do a few chores), then start all over again! My kids loved when I took every cushion off the couch and added some big quilts and make a homemade trampoline. We could spend hours on that and though I wasn't Potsy back then I sure was tired with 3 little kids and all those cushions make a great napping spot. I totally get the guilt. I have had pots for 3 years and it has affected our home life. Some days my kids see me curled up in a ball by 5pm and I feel very badly. They other day one of my kids got a D on a paper and the teacher wrote on it - you need a proofreader. When I saw this I asked him why didn't you let me proofread this and he said because you were sick. UGH. My kids used to have homemade breakfasts everyday and now they make their own. I think in the long run they will be more independent and compassionate. But in the meantime it still hurts - I like fully participating and now I just can't. Hang in there.

Sounds like good disregulated autonomic nervous system stuff. I would suggest that you try to keep track of what you ate, level of exertion, amount of sleep...stuff like that and see if there are any triggers. Someone once told me that when you have POTS, everything your body experiences is intensified by the overload of adrenaline running through our bodies and the failure of our parasympathetic system to help compensate. Try treating this as a POTS flare - get extra rest, exercise as you are able, drink lots of water, salt load etc. Hang in there. POTS is such a pain in the #!$!!!

Just stopped Levaquin today (being treated for lyme). It made me tired - I felt like I had been hit by a truck. I had a few heart episodes were it seemed to beat super fast for few beats. I had 3 EKGs before and during the first week. This was recommended by prescribing dr and cardiologist. I stopped taking it today because I think it is causing major shoulder tendon pain.

No problems here - doesn't make me sleepy at all.

futurehope Is there a spa nearby...that would be my solution!! Hang in there.

My bp tend to run high so I take beta blocker with the florinef. Are you salt loading as well? That is key.

The levaquin is for a co infection, bartonella. I am aware of the tendon issue but I will look into it further. There doesn't seem to be a lot of evidence that the iv is better than the oral, according to the limited data. Because I was reacting to the meds that is taken as a sign of the doxy being effective. We will evaluate again after a month. Thanks ladies!

Hi As some of you know I am being treated for lyme. Although I have had pots for over 3 years the lyme dx is new. I have completed one month of doxy. I am now going to do a month of doxy and levaquin. For the first two weeks of treatment i felt okay, some pots symptoms but very manageable. Two weeks into the treatment I started to get very potsy. It felt terrible to be on my feet, chest discomfort, dizzy, overwhelming sensation that I needed to lie down, off balance,hard to sleep, restless leg, bloating, blue feet, etc. These symptoms have continued. Now some of you feel that way everyday but I don't. I have had days when it was difficult to drive and that hasn't been around for a couple of years. My Cardio dr is seeing me monthly and when doing posturals (poor man's tilt kind of) my heart rate did go up 20 points from sitting to standing. Normally this is well controlled for me by my meds. I took this as confirmation that I am in a pots flare and a pretty bad one for me. My lyme dr, a neurologist feels this is a response to the lyme treatment. However we all agree that it is hard to know for sure since my health can have good and bad phases. But this is pretty bad. Adding in the second antibiotic may make this even worse but again, this is part of the process of treating the lyme. Levaquin can affect your heart rhythm so I had and will have EKGs. For now I will add in some more florinef to help my body cope. Stay tuned!

FYI concerta and ritalin are the same medication. Maybe one is extended release but the drug is the same.

for the last two nights I have wrapped my legs in an afghan while under the covers. The feet are happy and warm but not too hot and no restless leg either. Let's see how long it lasts!

I hope this is okay to post here - lots of newbies and oldies needing inspiration it seems so...heard this yesterday.... This is what i have to say to you. Use your discontent, your longing, the sense that you are bereft of connection, use everything around you to nudge you into choosing joy. Make the choice, not because life is as you wish, but because life is as it is. Resist and you know suffering. Jump in with both eyes open and you can drown in bliss. It doesn't seem possible, I know. You feel broken, disconnected, less than whole. Ask if awareness shares your restlessness. Ask if the infinite cares if your emotional state is tenuous at best. Ask if your dreary thoughts should be believed and if anything real stands between you and all that is. Use the answers you receive to open a crack in the wall of separation. Find a door, and stick your foot in so it can't close, even if your doubts grow huge. "I can't get there from here," you say. My reply is that there's no where to go. You are already home. Embrace your immortal soul, the flame that cannot be dowsed by wind or rain. Embrace the truth of you today. ~ Danna Faulds

Futurehope, I also don't have the typical aches and pains. I have IC and Pots, that's it. I remember many tick bites and yes the rash can be different than the typical bullseye. I think you are on to something..........

Living with a chronic illness is a huge adjustment. There are stages, phases and cycles. Don't judge where you are - just sit with it for awhile. When the laundry takes over the house you will get to it. Counseling has definately helped me. You learn to live with illness but it takes work and insight and compassion. I had to redefine my priorities, fine tune my relationships, learn how to balance what I want to do with what I can do. Dealing with worry about feeling sick in public is complicated. Give yourself time to learn the new "rules" for your life. I think your lack of energy is what I have heard others call a crash. Your body has run a marathon and now you are tired. Medications, rest, conditioning, all of these things can help. Concerta has give me so much more energy. I do know what it is like to be so tired that you think you will never be untired again, so tired that it actually hurts.... Tomorrow is a new day, this too shall pass!!

Yoga has been a big heal part of my conditioning. In the beginning I took it slow. I do not have exercise intolerance, but when pots first started I could get winded and tired just folding the laundry. 3 years later I can do over an hour of vinaysa yoga in a warm room (that was super hard to get used to). I never never never put my hands over my head or stand still in Mountain pose. Standing poses that require me to hold for a long time can be hard but the beauty of yoga is that you are supposed to listen to your body. I don't know your specific situation but I hope you can take your time and continue to practice. The first year I had pots I joined curves and that was a safe place for me to get moving. I don't pass out (high bp) so I may not be typical in my ability to exercise. But I will say this, if it is between cleaning the house and exercising the work out wins. I may have to lie down for a while after but that is okay with me.

My bp can be all over the place too. I also have the paradoxial thing going on. However, I can't imagine it being possible and or a good thing to train your body by standing still against a wall. I am not surprised you passed out. I think that is very stressfull on our bodies and should be avoided. I am no dr but that has been my experience. Conditioning is important but I don't think you can train the pots response out of us. Just my thoughts........

My toes are red white and blue, very patriotic but not so comfortable. I have started wearing HOTTIES (mini adhesive heating pads that you can wear on your socks and in your shoes). I love them. I even wore them to bed! I bought a big box at Costco. I also feel that core coldness and find things are better when I move around. Being outside for too long is a big no no. Unfortunately I have recess duty sometimes and can't avoid it. So I indulge and bought myself super warm fleece lined boots from Amazon. Sorrels are my favorite and I have two pairs. Yes, they cost a bit, but they are worth it because I want to keep my toes. Lastly, I sleep with one of those microwave heating pads. Sending you all warm wishes........

Concerta has been great for me. I still feel potsy (hard to stand, off balance,circulation issues) but I have lots more energy. I tend to run high on bp but seems to be okay for now.

This topic has come up before - read some old posts when you have the time. I have definately struggled with this issue. I too can work part time but I am not like I was before. So the battle is to balance acceptance with with still trying to get well, being in the moment but still hoping things get better, becoming comfortable with what is but pushing for more.... When to accept a symptom vs. when to try a new med. etc. The is no easy path to figure this out. It is an ongoing process as we redefine ourselves and our relationships in light of our chronic illness while not being defined by the illness. Counseling has helped a lot - I recommend it.

I am singing ritalin's (concerta) praises at my house. After a long potsy day I can still think enough to help the kids with homework and not be curled up in a ball on the couch. What dose are folks taking?? I didn't like Midodrin. I tend to have high bp but so far no problem.

Hi So you haven't had a recent lyme test? Maybe the reason they are scared of the medicare issue is they might have to report more about you and your treatment...I am totally guessing here....but there is soooo much controversy and drs have to be careful. I would try calling back again and not mentioning it? Band 41 is important, it is one of my positive bands too. I have read that some researchers say that if you have band 41 and don't have syphilis or gingivitus, you must have lyme. I have also read that it is usually the first band to show up. I have been on antibiotics for 3 weeks so far. My bladder likes it butI am still very potsy. Make sure the dr you choose is not diagnosing everyone who walks through the door with lyme. You should have other tests as well such as a brain scan and the cd57. I also had cognitive testing. My daughter had an emg. The dr we are seeing believes that there are many coinfections that complicate the issue. The tick gives you more than lyme when it bites you. With your IBS that might be something to consider. Bartonella can cause neurological problems and GI issues. My daughter had these stretch like looking marks on her sides and legs - another indicator of bartonella. Do you have a lot of ticks where you live? We are overwhelmed with them. Also make sure the dr uses a top notch lab like igenex. The test is costly and my insurance wouldn't cover it. Hang in there!

Hi My restless legs are really killing me at night. Not only do my legs start to cramp but when it wakes me I get a shot of adrenaline that makes me wide a wake and even worse totally wired. This went on for hours last night. Any tips?? I have been quite posty over the last week so maybe it is just part of the package. My lyme treatment might be stirring things up. I eventually broke down and took an ativan and got in the yoga position child's pose - finally got some rest. Heat doesn't help but being really cold is a problem too. I need to warm up my bed a bit before I get in. But hot baths make things worse for me. Sorry I am babbling but dreading the night!

Future hope do you remember me? I am a fellow ICer. We chatted a few years back when I was falling apart. I am being treated for lyme. It may be the cause of pots and yes even cause IC (or in my case make it worse). What band was positive? It is important to also have a cd57 test done which measures your immune response since the lyme tests look for anitbodies but if your body isn't making them you won't have many positive bands. Why not see a llmd? You have been dealing with this long enough. I posted about my recent lyme dx a couple of weeks ago - you can look back and read it. Feel free to pm me. lina

Are you salt loading and taking any florinef? That and betablockers are the key for me. But I do have good weeks and then bad flares that I can't seem to control 100%. When I have a bad episode I can usually get back on track with lots of fluid and salt.

I have frozen feet too. But at the end of the day or in bed they start to get red and burn - I end up having to stick them out of the bed covers...anyone else have this?

What's epogen?? These days I am enjoying the effects of Concerta (ritalin). It doesn't keep me from feeling POTSY but it gives me more get up and go.