Sophia3

Great job, Michelle! Well done! and I love the cover with a smiling healthy woman. Gee, she doesn't LOOK sick!! LOL. Mucho gracias, again Sophia

Michelle, I got my brochures yesterday and they are FABULOUS! I have never seen the debilitating aspects of the illness written in such a concise manner. Comparing it to congestive heart failure CERTAINLY explains the debilitaing fatigue a few of us face...and most everybody has heard of CHF! I am curious as to who worded the brochure. Great job (I might have added a couple more symptoms but hey, there's no room for every symptom! LOL ) Cheers and thank you for making this available!! I am going to send one to my therapist. Sophia

d4q7 I am positively SPEECHLESS at the way the police spoke with you and treated you! I am sorry and please keep us updated! Sending sanity thoughts and prayers from across the many miles of the globe! Sophia

woo hoo. way to go jan. Glad you got thru the deal. What I want to know is, do they still increase the incline! It messed up my knees when I had a basick stress test 9 years ago. I was lame for days. hope you get good results!! I wouldn't let them angiogram me...I would demand that new MRI what is it. ct something that sees MORE than the angiogram. saw a segment on the news about it and caught a segment on Oprah about the new MRI. SAFER than angiograms and can be done at most major hospitals now...or so they say. Best of luck to you jan.

gosh, what a horrible time for you. sorry about the lidocaine reaction. I hope you feel better soon and just wanted to send some thoughts. If lidocaine is what they use in dentistry for filling, I have had that. I hope you get some relief soon. Keep us posted.

Morgan, when you said your leg hums, all i could wonder: what kind of music? Broadway show tunes? Classic rock? Does it sound like a kazoo?? Seriously, I don't know if I get what you get but I DO know sometimes, my left leg falls asleep when I am sitting upright or even in bed. Or I get that need to shake it because is just feels like it's on a mild vibrating chair or something. It's very weird. My room mate has a recliner with heat on the back and some cheesy loud vibration for different spots. When I turn the leg rest on vibrate, I IMMEDIATELY get light headed!?! so that is weird..like the increase circulation is drawn to my legs from my brain. matter of fact, lyiing in bed with this laptop, my left leg is doing the sensatin of falling asleep again or tingling. It's very odd.

Good luck on the hysterectomy. I am not going into a debate to see if that's what you need since I don't know your history. I do know many docs do a myomectomy instead of a hyst. My sister had her uterus removed 20 years ago due to severe pain it put on her lower back nerves. It was great relief and her leg pains stopped as well. however, my sisters horrendous mood swings were so severe, she finally kept a diary of her symptoms. she still had HORRENDOUS PMS every month. She was married to an ob-gyn and after consulting with a few others, had a doulbt oopherectomy (removed ovaries) She claims, and I believe her, that her mood was better right after surgery!!! She had horrible low BP after surgery but her mood was better. Many years after the fact she is thrilled with BOTH decisions. I have sick periods and hormonal surges and swings and a hyst wouldn't be the way to go for me. BUT I WISH IT WERE as my periods flood, and make me very ill. I am also in perimenopause and want to let my perionds stop on their own eventually...I am 49. Good luck in your decision and just read A LOT to Educate yourself on what you are doing to your body. Morgan, I just had such a sick period, I wanted to put an add in the paper. For sale: Uterus...never had kids. Cheap!!LOL

Wow! That is horrible! My first thought was, some people can actually drink alcohol with this illness? lol but then, if this is your first offense, OUCH!! It is so lenient where I live in Ohio when I read the police postings in the paper I just about want to SCREAM at what some folks get by with, you know? Than, again, we were not even driving?!? It sounds like they are taking you to the cleaners AND taking away your privileges to drive to work? They better not do that and if I were you, I would seek the advice of legal counsel. That sounds like an outrage for a first offense..ESPECIALLY since you were not even driving. Regarding taking medicine,s 25 years ago when I worked in a doctors office, the local jail would not allow women inmates to take their hormones w/o calling the doctor's office!! I know in this country, in the state of Ohio, if you were asleep in your car because you pulled over, after deciding you are tipsy, if the police find you ASLEEP with keys in ignition, they can arrest you. Even if you fell asleep in a bar parking lot before moving the vehicle. ~~ just found this tidbit blurb online. In most, if not all states.....you can be arrested for DUI even if you are asleep in a vehicle such as in a parking lot of a bar or anywhere while intoxicated. Depending on the state, its called something to the effect of "being in physical control" of a motor vehicle which basically means that you could at anytime drive off if you wanted to while still intoxicated. Many people think that they are doing right by trying to "sleep it off" a bit before driving home. While we as law enforcement respect this idea, too many times a person will wake up and think that they are sober enough to drive while actually they are not. They will attempt to drive home and some will have a wreck. This is why we can and do make this kind of an arrest.

hi welcome to the site. sorry you have the inner ear thing like many of us. I go thru spells of eating LOW sodium when my ears feel plugged or my vertigo/spinning/nausea situation is acting up. Has your doctor suggested BPPV exercises? They can be very helpful for helping ear problems. I go thru spells of high salt, medium salt and or low salt for this inner ear stuff. It's a real catch 22 but you can get some relief. Good luck.

glad you are feeling better.

is it possible to speak with doc about cold meds to HELP YOUR EARS before flying? also I would consider a surgical mask..or a bandana to keep over face and nose...just pretend to cough a lot and nobody will ask questions. Course, there is always a stigma of looking like Michael Jackson...but seriously, I have heard medical guys say to WEAR a mask if you are vulnerable..while flying. AND if you can get your sinuses and ears protected, it can cost a fortune to rebook the flight. but make sure you are up to it....best of luck. Found this link on air travel and colds. So REMEMBER CHEWING GUM..that helps for ear pressure. http://www.entnet.org/healthinfo/ears/altitude.cfm

take your own bottled water for the plane or gatorade...salty snacks can help, too. Do you know the drinking water lines on the plane are FILTHY and full of bacteria. This has made news numerous times but in case you missed it, take plenty of water fore your trip andif you use ice cubes, ask about the source. I haven't been able to fly in 13 years but I have a kind of funny jet story My room mate is a pilot and took some friends up in a single engine plane at our local airport. A couple of pilots were there (one was GORGEOUS!) and notice my sitting on the bench watching the planes and enjoying the sunny, cool day. Well this pilot starts talking to me and I asked about his job. He downplayed it staying it was a glorifed 'chauffer' job. I was admiring the jet he was flying. He asked "would you like to see inside?" Well heck yes! So we went into the plane and I saw how "the other half lives'..the owner was at a college visitiing his daughter. This pilot let me sit in the cockpit and it was small and claustrophobic. but so COOL to see what they see. Then, I had to be a little bit too curious and ask "does an upscale jet like this have it's own bathroom?" The pilot looked sheepish and grinned and lifted up a lid. It looked like a big cooler and he said "this is the toilet". I didn't even get up from the pilot seat to look!! I said "right here? In front of the plane for everybody to see?" He laughed and said' "you have to go REALLY badly to use it and there is a curtain for privacy!! Well, leave it to me to think about my tiny bladder flyiing in a milion dollar aircraft and holding things in for 3-4 hours. I would need a pair of depends or a jar for my bladder. So much for buying my own jet someday. Walk around when you can and do toe raises to get the blood going. Best of luck.

Persephone, I forgot to add a real boost for me is to lie flat with feet above the head!! That can REALLY help me bounce back...or at least with feet above the heart level. But when above me head, I SWEAR I can feel the blood returning there almost immediately.

lack of B12 and b vitamins 'could' be cause of concern for your diet but tough to tell if it is the symptoms you are currently experiecing. When is the last time you saw or spoke to your doctor? are you pushing yourself a lot these days to MAINTAIN upright posture? i know i got so years ago i had a friend help me get a laptop because I woulf 'feel' panic like attacks of adrenalin from trying to sit up at computer. I finally put a foot stool in front of the computer but after awhile, realized I needed a recliner and that doesn't work at a computer w/o proper layout. If you are staying up right and under deadlines, that 'might' explain why your adrenalin is in overload...along with any other recent stressors you may have going on. But this is all extrapolation but protein can be very important for us as the adrenalin surges may wreack havoc with blood sugar levels. Then again with OI it may be totally unrelated to diet. I know the first time I read about the OI "diet" on NDRF site years ago, I about flipped out but it helped me a lot but was far from "natural" and healthy!! so all our bodies are differernt. I know some pots people who can ONLY get thru coffee all day long and more than two cups makes me nuts and gives me the shakes. so caffeine is a wonder for some and curse for others. Try to speak with your doctor if you don't feel better soon. Good luck.

Wow! Thanks Michelle! I have a brother in Seattle who for years wanted to fly me out to his home in the woods, on his dime, and he doesn't understand my debilitating fatigue makes it impossible for me to journey to airport, 2 hour security stuff, 5 hour flight, etc. So I am going to send a pamphlet to him and maybe he will understand better. This is so cool. mucho appreciated.

jan I am so saddened to hear your doctor was so blunt with you and Jeff. I can NOT imagine how that must have put the weight of the world back on your shoulders. I also wonder why he felt compelled to go the brutal honesty route, if you and jeff were taking things a day at a time. That doctor just wasn't thinking. We have all heard stories where people defied the odds much longer than the doctor first prognosticated. I hope you can help yourself with the POTS symptoms as it can be a nightmare when WE are under stress. Good luck in taking care of yourself and Jeff.. If anybody can pull a trick out of his sleeve for a situation, it is Dr. Grubb. He can at least be a reassuring voice for you to hear after that other doctor. I send many more thoughts and prayers to you both.

Good grief^%%$#^!# I HATE to hear of such arrogance from doctors and nurses! ANS problems can be worsened or even CAUSED by certain antibiotics...especially the new super powerful ones!! I remember reading that years ago when I had some concern about antibiotics given to one of my CATS! YOu know, some of you have had such rotten experiences by your doctors, it could be considered gross neglect of duty. I am not a redneck sort but sometimes I wish foul language was TOTALLY acceptable to speak in a business like setting. I can NOT think of one ladylike response to your FRUSTRATION at this time. This is where one wishes they had energy to hit a bucket of golf balls at a driving range...pretend each golf ball is the face of the doctor and or the nurse/bull dog that answers the phones!! LOL. Hang in there and GOOD FOR YOU for getting a new doctor. &^%$#@$!%!^!!

Sorry to hear about the fibro dx. I feel it is another real illness though "wastebasket' dx where it's underdiagnosed in some who REALLY have it.... and over dx in pts where the doc just can't say "I am not sure what is causing your pain". FM is based solely on the 'tender points' but can also cause general acheyness in my hands that feels like CHRONIC arthritis, 24/7 though bloodwork and x rays are normal. Or so my current doctor tells me. FM or fibromyalgia USED to be called fibrositis. Some debate it's a neurological problem as opposed to rheumatological problem. all I know is it hurts and most meds do no do squat. Sitting in a wooden chair for more than a few minutes, causes delayed pain that feels like knots all over my back. Massage therapy causes SEVERE DISTRESS. My sister is a massage therapist and can only due light cranial work on me. I was first dx with CFS 20 years ago (back when it was called chronic adult mono) and then the pain became an issue in the early 1990's and a huge problem in the mid 90's. A sleep study for sleep apnea (to explain my horrendous exhaustion) showed I had severe alpha =intrusion sleep. Nutshell, I get very little if ANY restorative sleep. so as time goes by the "fibro" gets worse. My 8 hours of sleep is like somebody else getting 3 hours sleep...Many people with fibro have poor quality sleep and in those pts, our pain would improve if our sleep is improved. But sadly, for many of us that isn't possible. You can even take a healthy person, wake them during restorative sleep and in time THEY can develop FM or so studies conclude. I have sensed learned -only in recent years, POTS can cause sleep disorders of which there are many including chronic insomnia (UNRESPONSIVE to exercise, 'general sleep hygiene' and JUST get up at the same time and it (insomnia will improve) Many of us have circadium rhytms out of balance. I tried the FM aka fibro "CURE" of a GHB study and I had no improvement. A couple had great response and one miraculous. So we can all have symptoms of FM, but like ANS different etiologies. It's tough when some of us have multiple dx that are reall yet ALL UNTREATABLE!! *take a deep breath*!! Also, for those who can nap, FM can be greatly controlled. Having FM doesn't mean you have insomnia or even alpha intrusion sleep but rest is KEY to keepng things under control. Good luck and I hope you figure out YOUR situation. Sorry to rattle on about me in my example but all this CFS, FM/ANS junk can get overwhelming after all these years...caught me on a bad night.

In case there are any newbies here, this is an interesting article on Chronic Fatigue Syndrome. http://www.geocities.com/vitamvas/cfidsnews.html

That is such GREAT news! That is pathetic your ex employer could not talk to you but the fact their attorney did seems good. I bet he admired your spunk. It sounds like you fought this battle and kept your intergrity in tact!! Brava!!! This is truly a great post to read ..having the courage and stamina to fight. I know it couldn't have been easy for you but I can only imagine being "over the moon" as you say. Congratulations. Be good to yourself in the next few days ...and RELAX!!

http://www.immunesupport.com/library/showarticle.cfm/id/1287 This is just one of many sites that try to explain why those of us with CFS can benefit from B12 shots. Recently, about a month ago I went thru a spell where a shot a week did NOT help me one iota. So I am going to try an injection now and see if it helps my Menstrual slump. That is VERY interesting about magnesium being bad for MG!!

HI I am like morgan where being busy is only a distant memory. My GREAT DAYS are leaving the house to run errands for an hour or going someplace for two hours. If I go out for a brief dinner, closeby,we get a booth and I sit SIDEWAYS with feet elevated until dinner arrives but can only do this when I feel decent upright. I don't do the high seats or small wooden chairs. Only go to smoke free places and rarely do that. I spend time watching birds, listening to talk radio during day and watching selective tv at night (no horror stuff, or gruesome news or INTENSE tv!!) cooking simple meals a few times a month sitting on bar stool in kitchen. Make myself take brief walks on the better days. A few times a year I pontificate on this laptop and send letters to newspapers in outrage of what is happening to my city!! Lots of leadership problems and BUTCHERING OF long standing glorious hillsides for subdivisions. Looks like strip mining. It's amazing how one voice can get many voices stirred up and those with energy can attend city council meetings (those ain't for the faint of hearted or tired!!) Some things letter writing resolves while other editorial letters turn into the long goodbye of once loved trees, parks and green space! Sorry, it just pains me to see OLD TREES cut down and green space violated. But hey, writiing letters and seeing them in print gets it out of me and I let it 'go into the universe'. Or I do some digital photography and email lots of pics to people with look-a-like cats!!! LOL. Cut and paste and share funny email jokes when I get them! I am glad for those who can be on the go constantly. We all have different levels of illness. Some of us have been in the slow lane for so long, that I can't imagine the freedom to be able to PLAN TO LEAVE the house whenever I want...*sighs wistfully* but you do adapt. OR else. . . Peace

MY GOSH! What a HUGE incision you have. I can NOT imagine the discomfort!? I have had neck pain issues intermittent for years from old pinched nerve injury. I am sorry you had more surgery than you were expecting. Yes, we use our neck/back muscles constantly and I can't IMAGINE how you feel, after cutting all those muscles. OUCH. I hope the fellow surgery pts here and at other sites can give you tips on coping. Best to you! Take it easy. Sophia

HI I am not familiar with the one drug but am with Zoloft. While we are ALL different, sometimes it's the dosage being too high. Like how much Zoloft was your daughter on? I started with half of a 25 mg pill a year ago on and off, when there were family problems with elder parent and then a relative died.... but my problem is orthostatic tachycardia not fainting. zoloft can help with moods and with orthostatic tolerance sometimes. Sometimes tweaking the med dosage helps. Then sometimes no med helps...depends on if B/P is dropping first or the heart rate drops to cause the fainting. Has she had a tilt table test? If so, Did it specify which dropped first? It can be very frustrating, especially as a parent, I would imagine. I hope you find some answers soon. Keep us posted. But it can take awhile so not getting the answer in 2 weeks, don't let it get you down. Hang in there.

Wow, I stopped watching about 3 weeks ago. DO TELL what they found out.