scarfgirl

My husband struggled big time to be able to keep up with housework whenever I fell behind. And I'm not exactly a neat freak. Eventually he decided to find a woman who could clean up after herself and him. Oh well....

It isn't bone crushing exhaustion...it's soul crushing exhaustion. 20 hours of sleep and I can barely hold me head up. Hopefully it'll pass soon To everyone else who's tired right now I offer a big virtual energy hug!

I would think a good physical therapist could find something for you to do. Mine gave me a ton of exercises that you can do lying down. She really helped me figure out which exercises I could and couldn't do. Now I have a number of exercises I select depending on my symptoms that day.

I'm a veg, and didn't become one until after I had been diagnosed with POTS. I found being veg to actually improve my health a bit. Not a tremendous amount mind you, but when you have low energy, not having to use any of it up trying to digest meat is nice.

I brought one of those huge cheese logs. Enjoy. I'm going through a bit of the same. I just can't shake a sinus infection. **** thing has been going on for like six months and just when I think I've beat it symptoms start creeping up again. Hang in there.

Antibiotics are practically a necessity for me

((((HUGS)))) I can relate. I'm 31 and I'm currently off all meds because nothing was working for me. Going in Monday for a complete reevaluation. You haven't been diagnosed long, so don't give up hope. It takes a long time to figure out which meds work. If what you're on now isn't making you feel better, try something different. Accept things are gonna be majorly sucky right now, but do know that things will get better. Until then grasp whatever happiness you can and feel free to come here and vent. Your family may not understand, but people here will. ....yeah I'm not good with advice. Points for trying I hope.

I understand how you feel. Ever since my husband ran out on me sometimes all I do is worry about being alone. Like you, I know I'm supposed to focus on the present, but whenever things start going bad physically I automatically start thinking the worst - me, alone, being tended to in a state run nursing home because I live below the poverty line and have nowhere else to go. I'm getting better, but it's slow and painful. Today I was too sick to attend my family's Thanksgiving get-together and instead laid in bed going through all the worst case scenarios for my future. Now that I'm up and about I can let it all go, but I know those awful feelings will be back again. Hang in there. Know you're not the only person going through this. And if you feel you need to 'whine' some more, go right ahead. I'd give you and Alicia both a hug if I could.

What Erika said....can you explain the vasomotor rhinitis connection? I'm not quite getting it. @friday7 - I sometimes think that my POTS wouldn't be a disabling condition for me if it weren't for my sinuses. Every relapse I have is triggered by sinus problems. My quality of life improved greatly after sinus surgery, but I still have a ways to go.

I took Feverfew back in college, when my only symptoms were migraines, and it after six weeks on it I was in agony. It made all my symptoms WORSE. Feverfew is a vasodilator, and that's seems like a bad idea for a lot of POTSies.

I too have the prolapse. For me the POTS causes the prolapse, not the other way around. Lack of adequate blood flow shrinks the heart a bit, making the valve floppy--I think that's how it was explained to me. At my healthiest the prolapse can't be detected, but when I'm really sick it's plain as day.

Not to entirely hijack this thread, but has anyone also thought about not having kids for fear of passing this illness on? I couldn't bear the thought of bringing a child into the world that will have to go through what I've gone through...and research seems to suggest a genetic predisposition in a lot of cases. That's what has stopped me from considering getting pregnant.

You know, I didn't even realize I had made that post until I was checking out the forums today. Guess I was a bit dopey that day. Yeah, Ernie you're absolutely right. I realize that's my next step, but I've been putting it off since it was a pharmacy screw up with my midodrine that started this year-long relapse. I'm on prednisone, but once I'm done with it I'll go off the midodrine and see what happens. Thanks for all the BB warnings guys. Do any of you have more positive experiences with calcium channel blockers?

Katja, thanks for that link! I'm having a stupid day today, but my DH is reviewing the presentation for me right now.

Around this time last year I was at my healthiest in a long time. I was able to exercise in a gym and I had dropped all my meds except for midodrine and a teeny tiny bit of florinef. Then I had the usual sob story-mild illness causing total relapse and all hopes dashed once more. Midodrine was my miracle drug that had helped me get strong again, but after this relapse I felt exactly the same as I did before I had started taking midodrine. My Dr. hypothesized that something else was behind my relapse and after months of poking and prodding it was decided i had a chronic sinus infection that was wreaking havoc with my system. I had surgery a few months ago but I'm still no better. I can breathe really well now, and the constant join pain is gone, but the tachycardia and fatigue have stubbornly persisted. Midodrine and salt loading have always helped me through rough spots in the past but not this time. The only thing that helps at all is large doses of atenolol to slow my heart down. I'm now taking 4x the amount I used to take and I still feel I'm running a marathon everytime I stand up. I can't do ANYTHING anymore. In the past, even when I felt bad or relapse for no reason, there was always something to try. But neither me nor my doctors can think of a way to go from here, and that scares me to no end. I really don't know if this post is an attempt to ask for advice, or just my need to vent frustration, or admit how ******* terrified I am right now.

My lymph nodes tend to swell whenever I relapse. It's one of the reasons I think my POTS is viral in nature.

Lois - Horseback riding can be a great treatment for those POTS people that can maintain a sitting position well enough. It's a very low stress way to tone up the muscles in your leg. I imagine steeple chases are out for all of us though I wish I could do horseback therapy, but I have no way of getting to the town where the riding center is. Something about the phrase "allowing her to regain control of her body" really irks me, although I'm not sure why yet. EDIT: I think you can contact them using the link right above the Copyright notice.

Oh yeah. ALL my joints hurt. Muscle pain seems to be limited to my upper back, shoulders, and neck.

Hi Carolyn, I don't have an opinion on whether or not your son should take the medicine. I just wanted to say that florinef seems to be a minorly controversial treatment in the medical field. One of my in-laws, a very skilled pharmacist, doesn't like me taking it. And neither did my GP for the longest time, although the latest research has changed her mind a bit I think, as she actually upped my dosage recently. However, no specialist I've seen has had the tiniest concern about me being on it. I'm not sure what causes the opinion gap between GPs and specialists, but it's definitely there.

Was there meat in the sauce? If it was a meatless sauce I wouldn't worry about it.

I'm gathering this information for my Dr. She's reluctant to have me try anything else b/c I'm more or less "stable". But I don't wanna be stable, I wanna be better! I've been doing a lot of research lately and mestinon looks like a good next step....and if the results of this poll are pretty far into the positive I'm definitely gonna push for it. Also, I just wanted to make a poll. Cheers, Stacy

oh my, are you gals actually able to wear those in the summer? I'd worry I'd pass out from heat exhaustion just trying to get them on.

Oh and Briar Rose, tell me more about neurontin and what it did for you. Thanks again.

Thanks for all the input. So basically, the cause of the pain is as poorly understood as everything else. Makes sense. I first panicked and thought rheumatoid arthritis (it runs in the family) but tests for that are negative. So now I'm just trying to figure out ways to cope with the pain w/o resorting to meds that'll dope me up too much. Warm baths, yoga, and I'm gonna try some strength training focusing on my knees and elbow joints. I was wondering if maybe all this inactivity from when I was more severely ill has made my joints weak and unable to handle daily activities. I am hypermobile (no other symptoms that would make me suspect ED, just the "normal" freakish flexibility that comes with being tall and skinny) so it would make sense that my joints might wear out a bit quick. Anybody had any succes with using strength training for management of joint pain?

I know a lot of us experience joint pain or something similar, but I'm curious to know if anyone has any clue why chronic pain develops in some of us. I'll go through periods where every single joint in my body is just screaming. My doctor hasn't a clue why I'm hurting so bad (it now surpasses dizziness as my biggest complaint), and I haven't read anything that suggests a reason either. Anybody know what causes their pain? or at least have an idea?