Sophia3

It is PERFECTLY NORMAL to get symptoms such as lightheadedness, or many others, while urinating or defecating. Doesn't matter the position. It's PART of the illness. In Grubb's old book that he edited: SYNCOPE Mechanisms and Management there was a definition called Defecation Syncope. He also mentions it in the NEJM article recently. Coughing, same thing. Singing for me, same thing I have found voiding my bladder often makes me lightheaded somedays more than othes...just depends of where are hydration and catecholamine levels are. Also how sensitive to ANS problems and the severity of them. since this changes with each heartbeat, impossible to decipher why. It just iS. Emptying my bladder years ago never used to bother me much...more so now. And don't get me started how sick I am on my period...emptying my bladder everytime almost makes me blackout at this time....

Ok, I am not naming names but just heard from a girl who went to research for a week in facility. Still sees one of the BIG NAME ANS docs a couple times a year. She lives 20 minutes from his office. When SHE APPLIED for disability, he wanted NOTHING to do with it. He said "How do I know you are disabled"????????? Excuse me? All these guys KNOW THE DEBILITATION of this illness yet NONE will support the medical help needed to apply for SSD? What is up with that? All these guys want/beg for research dollars/patients, but don't want to assist ill pts in Soc Sec disability paperwork?? So my friend had to see her wonderful G.I. doc to get the paperwork done to get the disability. She STILL SEES said ANS specialist and sometimes he is rude and insulting to her. But if she takes her mom or husband into the exam room, he is very nice and a different personality?? This isn't the first time I have heard stories on some of the so called great docs. So me thinks these specialists need to be more 'compassionate' in their PRIVATE PRACTICE!! How is ANYBODY supposed to take our limited abilities seriously if the quote "ANS SPECIALISTS" will not back our claims?? If they dismiss us? I don't mean to stir anything up but this makes me angry. How is dysautonomia EVER going to be specifically listed as an impairment if the docs themselves do NOTHING to promote how it is robbing many of us of an ability to make a living or to have a social life. What say you?

True, only attending physicians can treat and write about disabilities, I do think the form letter could've been worded a little differently and still remained neutral, i.e. doesn't apply to disability status, which I understand since he doesn't see same pts daily. I especially believe it could be worded differently if Dr. Low did indeed write an article about the disablin aspect of POTS. Then again, I know that a simple article can't be used as 'proof' to anybody but is a method of enlightenment to doctors. Again, you just need another doc to DOCUMENT and support your limitations. Just move on to the next plan and good luck. But I edited my previous post since I was PMS'y and not exactly fair to the doc.

Morgan and others, Morgan it sounds like you have almost a constant case of what I am only an intermmitent sufferer of..BUT my periods can trigger this too. Sometimes, I wake up and it feels like my bed is kind of moving...as if I am on a boat. **BTW, a friend of my sisters, has a wife who has Menieres though she has gone on 50 cruises over the years!!?? Do you believe one can DO CRUISES with this illness?? I do not, but I digress** I agree the exact dx is tough. Morgan, have you ever had the nerve to try a BALANCE disorders clinic? I have thought about it but my doc is such a believer in my situation and KNOWS my med sensitivity I have hesitated to go. Especially since my case isn't as chronic as yours. THAT SAID< I am always on the verge of dizzieness. Rarely take elevators when out but they can trigger this sensation. Riding in back of car of course or even side car or even driving so I don't drive on those days, OBVIOUSLY. I once walked on a floating dock decades ago and got instant motion sickness and the others iin my group couldn't believe it. Same with floating restaurants....took that OTC antinausea med and just felt groggy but hated the sensation. Morgan, that is interesting about lying in some positions. When I lie on my right side, I am can fall asleep easier usually (even with my chronic insomnia and need for klonopn) I never tied that to the rocks in ears , inner ear deal. Interesting what we learn from each other. Also, I guess it's a no brainer that dry sinuses triggers all this "off balance" sensation. We have had the furnace on a lot and my room is drier than rest of the house. I just changed the filter and it was charcoal in color after two months. Lot s of cold weather here....My room is built over crawlspace, rest of house over basement. I just got some saline spray and took a shower (which made me feel worse but I hope helps sinuses) I also was dehydrated the other day when I realized I hadn't emptied my bladder in about 6 hours (LONG TIME FOR ME unless taking DDAVP and still pee more than that on the med unless asleep) My lips were chapped and the next morning, when I blew my nose, things were pink or bright red. My urine was dark which rarely happens unless I am feverish. Gross but a first for me. Even when I had sinus infections once never had THIS much blood. So anyway, I have thought about balance clinic but figured they would give similar exercises found on net and way too many drugs. I find xanax helps me some tho my doc said Valium is drug of choice but siince I use xanas for some other stuff, to pop one to see if it helps. YEARS ago valium made me mean and cranky where xanax does nothing to me. Sorry, didn't mean to prattle on. Hard to absorb a long post. At least for my Swiss cheese brain. Anybody that has this vertigo CONSTANTLY has my sympathy...I do wonder if they others notice a difference during period or ovulation. Is there anything fluctuating hormones DON't aggravate??.

Julia, One thing we must remember, they always want to make folks want to give up!! Years ago, when I had a meeting with a psychiatrist about the disability (she spoke at some CFS support groups) she warned me in no uncertain terms that I better be ready for a fight if I didn't get approved. That they would have their docs make me look like a malingerer, or crazy or smack me around emotionally. IT's WHAT THEY DO TO EVERYBODY!! Well, many people. So, wait until you hear what they say and just keep yourself well armed. AND WELL CONNECTED. I am glad the sites I posted helped you. Remember, the squeaky wheel gets the grease, but the wheels that roll together actually get somewhere!!

Julie Sorry to hear about your *&^%$#@ paid ***** SS doc. I hope you have a good soc sec attorney lined up in case you are denied. Or did you have an attorney already?

I have osteopenia and it has gotten worse in 4 years...so i try to make sure I use weight bearing exercises at least 2 times a week. Nautilus for lower body and one safe back machine. I can't do much with upper body w.o trigger episodes. BUT WEIGHT BEARING EXERCISE DOES MORE FOR OSTEOPOROSIS than meds and supplements!! Supplements are important but some aren't absorbed well. Calcium Citrate is best and more expensive. See this site for strong women exercises. http://www.strongwomen.com/faqs/strong_bones.stm and http://susunweed.com/susunweedarticles.htm#an5 this site talks about the importance of FLEXIBLE BONES not just stronger bones...herbal infusions can help but I know stinging nettles is a diuretic so that is a no no for some of us *sigh* Also Soy can LEACH calcium from our bones.

I have all the symptoms of Meniere's except the hearing loss...so my doc gave me a quick dx of BPPV Benign positional vertigo (forget the other word) He gave me exercises to look up on the net to do that initialy made me feel MUCH WORSE!! but then helped. I was willing to do this and it helped. He said I have the classic symptoms of this and 'rocks in my head'. Meaning, I have calcium deposits in my inner ear that need to be re-arranged. And the exercises do help. This site here is aimed at eye doctors but gives lots of info. http://www.opt.pacificu.edu/ce/catalog/COPE7282/Dizzy.html My ANS doc (internal med endocrine specialist) diagnosed my constant intermittent vertigo bouts by having me do this exercise. He had me lie on exam table and hang head over the side looking at floor. Then quick sit up and I think I follow his finger...I got so lightheaded and dizzy and ill feeling. He grinned and said "I swear you are turning a little green". He checked my hearing holding his wristwatch at different spaces from my ears. (I have hearing like a dog but also the shrill constant tinnitus) So he said "technically" you have to have the hearing loss for Meniere's, but I have the other symptoms for sure. Years ago some ENT "specialist" gave me some hearing test and a white noise test to check the brainstem area (for possible tumor maybe, I forget) THEIR idea of checking my balance was walking toe to heel in straight line. My doc said that didnt' mean squat if I was having a decent day or it wasn't a trigger of the vertigo. But exercises can help in many cases but seek your doctors advice. I can NOT handle motion sickness meds and could NEVER EVER handle amusement park rides and get car sick easier the worse my POTS has gotten. Hope this helps more than it confounds. Sophia P.S. the Brandt daroff exercises on this page help. You sit then lie on side with head slanted towards ceiling. This site explains BPPV. WARNING, this exercise triggers severe vertigo and nausea but TRUST ME it gets better and has helped "Me". http://www.tchain.com/otoneurology/disorders/bppv/bppv.html

http://www.disabilitysecrets.com/administr...-law-judge.html Also explains what a vocational expert is which is the same thing I mentioned in another post. From the above link. For this reason, claimants for social security disability benefits should never consider going to a disability hearing without qualified representation.

Danelle, That was not my post BUT a post of somebody VERY VERY WISE and astute about the Soc Security System. Actually, I don't know what a vocational expert is except a person paid to PROVE a claimant can do SOMETHING for a living. Like many can't do their original job, so some 'vocational expert' says you can sit and do this for a few hours. So an attorney that knows your illness could argue those points in court. Attorneys are paid to think quickly on their feet. Sometimes they know the judges and know what to expect in making a presentation. Yes, better to lost 25% of BACK pay to a lawyer than to live on ZERO pay. LOL. Good luck in getting your appeal started ASAP. btw, What state are you in? have you investigated good disability attorneys in your area?

Here is a great post about WHY YOU NEED AN ATTORNEY for hearings. I hope this helps people on the fence or considering all the hoop jumping and wall hitting to get Soc Sec. You can't take any of it personally!!! ~~~~~~~ The issues raised at a hearing are far more likely to be about points of law than about you. You need an attorney because those points won't be raised if you are not there. The ALJ will have the DDS decision against your claim in front of him, with no counteracting legal opinion to consider if there is no attorney. If there is a vocational expert, you want your attorney to raise any needed clarifications, since you are not invited to speak during the hypotheticals (no matter how much you want to explode!) Your attorney may ask you questions that will bring out the most important factors of your case, which you would not have known were the critical elements to mention. Perhaps most important, if you can represent yourself, then why can't you work? Demonstrating competence will not work for you in this situation.

Linda, I am not the one who started this thread. I have my disability and am going thru a review..but if I get problems will call attorney. somebody else was told NOT TO GET one upon her INITIAL application....I was just saying to jer to get one...I think you got my name mixed up with somebody else but thanks anyway!!

Danell Yes, yes a thousand times YES! Get a disability lawyer NOW. Those that tell you not to are ignorant of HOW THE SYSTEM WORKS. THAT is where an attorney can SAVE YOU. A disability specialist is TRAINED to jump thru the hoops of the legal system and are FAR FAR SUPERIOR to a person doing it alone. I have posted NUMEROUS disability sites here and other places. Please read the links MM posted. There is no humanly way possible you could have the time, energy and know how that a good disability attorney has and can do. I can't re-iterate that enough. I had an attorney spend 30 minutes on a cell phone to me back in 1990 telling me to try it first on my own because my paperwork was so diligent and two doctors verified my situation. So I did what he told me and got accepted the first time. He only said for me to try first since time wasn't of the essence and to save me money (I was still married at the time so money wasn't an issue back in those days) But by having some sense of who I was, had I been denied the first time, BOOM, I had me an attorney to call. I heard him speak at a support group for CFS and he was dedicated. So get a good attorney and turn the appeal burden over to him/her. Good luck.

My goodness, such a tragic shock and ongoing sadness for you. Thoughts and prayers sent your way. Sophia

http://fmscommunity.org/disability.htm#scott This guy is based in AZ but helps all over the country for FM/CFS pts. He has even helped people in Ohio. He gives excellent advice.

I have had an EMG. I have a great pain tolerance and even though I have fibromyalgia, this didn't bother me but in a few places. it felt like some skin pricks. But it was WORTH it cause even though I have no repetitive motion, I have bilateral carpal tunnel. Though my neck MRI was "normal", I had a pinched nerve 20 some years ago and it always hurts in the same place. Now, when it acts up, it affects both arms and sometimes the ulnar nerve (aka crazy bone at elbow) Now then they tested the ulnar nerve, THAT smarted and I almost slapped the doctor because the reflex it provoked from the simulation, lol. I was told a horror story RIGHT before the test that some people get up and leave it is so painful. (Ignorant female staffer) Now, had this test been done on my back (my entire back can't take normal touch or soft massage) I would've had a hard time. But I was lying on my back and able to keep my eyes closed and just relax. it was worth it BY FAR to confirm what we had suspected and the MRI lied about (??) since the neck pain triggers the intermittent bilateral CTS. Recently, I have seen stand up MRI's advertised in my area. That would've made sense for me since my neck HURTS sometimes when standing, but is often relieved when lying down (unless I have done something to aggravate it) But I do believe EMG tests can be more exacting about some dx but my swiss cheese brain at the moment can't remember. Hope this helps. A few seconds of discomfort is worth it to GET ANSWERS. Good luck and just breathe deep and keep your eyes closed...that can help. Oh, and ask your doc WHY you are having it done. It is your right to know.

Julie Sorry to hear your latest MRI interpretation is 'normal'. How frustrating and scarey considering how miserable you have been. I hope you get some answers soon. Tie another knot in the rope and hang on until you get another pair of eyes to review this.

Gatorade has save me SO MANY TIMES in the last several years of horrible debilitation, I could do a commercial!!! It really is like an oral IV. I drink a tall glass slowly or on bad days, guzzle one cup and then dilute a little with water, to make it last. but if really dehydrated, mixing it with water will flush it out of your system quicker. There is a REASON for the forumlation and that's because the body RETAINS IT. As somebody who has peed way too much over the years (salt didn't do a darn thing for this problem but DDAVP DID) I can't sing the praises enough of Gatorade. They have saved me trips to the ER (which I ALWAYS, ALWAYS TRY TO AVOID and have only had to go twice in 15 years) I have reactive hypoglycemia but Gatorade has NEVER bothered me. I must say the flavors vary GREATLY AND MANY OF THE NEWER ONES ARE REVOLTING!?!!?!?!? I like the clearLime or Orange. Hard to find, but like to drink them when I can but otherwise, Orange is my favorite ( and my 84 year old mother) or Lemon Lime. The labels all look similar so read carefully. All bottles have the SAME RATIO of calories and 50 calories for 8 ounces is good. Some flavors are so TOTALLY DISGUSTING I don't understand their popularity but whatever works. I have been unable to get out of bed but after a couple tall glasses of Gatorade in an hour or two, can get up to get something to eat. I am not one to pitch a fit about the types of sugars or artificial ingredients. My illness does not benefit from STRICT "no fake this, no fake that" diets as I have been there done that. I also work to keep weight on so Gatorade isn't an issue there. But I don't drink it all day long. I sip small amounts of water. I start the day off with Coffee with a generous dash of salt in the grounds before brewing. I have POTS, the non fainting version but semi-housebound. So this is my gatorade story, lol.

Rachel Elsewhere I posted about the Disinissues email list STRICTLY DISABILITY questions group. Did you sign up for that? They could tell you EXACTLY what letter you need. That site is STRICTLY ABOUT HOW TO GET DISABILITY, the specificities needed IN WRITING, and how to explain your daily limitations.

Yay! I haven't tried calling yet cause I can only make long distance calls from others phones, not mine (to save a few bucks a month and i NEVER call long distance) So I hope the Smiths are well. I got NERVOUS with the site being down AND the disconnected phone number....even tho the recording said, TEMPORARILY disconnected. Yippee!! Glad the site is back up.

test..tried to post to this and it never showed up....hmmm... Ok, I dont know how to post in this place..tried to post a reply to Nina and it never showed up***Sheesh***

Oh, my GOSH!!! THAT is terrible!! I know both Linda and Dan have had health problems and now I am majorly concerned. I sent an email to Linda and have yet to hear back. Gosh, this is sad news, indeed.

I wanted to post some info there and the entire site will not even come up. Has anybody else noticed this? Has anybody asked what happened? It's odd for the site to be down a couple days. but with all the Internet threats of trojans, viruses and stuff, anything is possible could've happened. Just curious, thanks

Gosh, Julie...you have been through so much and I hope you get some quick answers and fixes. Sending thoughts and prayers to you. Take Care

Tried posting this at NDRF but the site is down. http://fmscommunity.org/disability.htm Scott Davis is one of the top disability attorneys for CFS and FM.