LYNDA66

Hi All, I understand all to well about this bone and muscle pain stuff. My whole body hurts and my husband gets mad at me when I tell him to please not touch me it hurts. He looks at me like I am crazy. I have had to go to ER and they don't know how to treat people like us. I am really sad about all this stuff and I seem to be getting no where. I just want to know what is going on with my body and to know how to get back to as close to normal as possible. I go to cardio today, my heart keeps getting into this weird beat and feeling. Its like it starts to get tachy and then the autonomic system says "no you don't" and pulls it to a stall. I get real light-headed and dizzy. I lost a bunch of weight and now my diabetes is worse then before. I get really high mostly only after I eat and it doesn't matter how healthy it is and that is when this heart thing worsens then and then in a very short time I get really low and I don't get the symptoms until I am out cold on the floor. I am having a real hard time with all of this and I still don't have all the diagnostic stuff yet only that I have "dysautonomia" Very low BP's and HR, fibromyalgia, CFS, Vasovagal Syncope and diabetes. How do you guys get this stuff and the bottom of your posts? If anyone wants to email me phlebolady@gmail.com I am a phlebotomist when I can handle working.

I have endometriosis and have had a full complete hysterectomy at age 24 I am almost 40 now. I don't know if there is a connection or not. My endo suggested that I wait to take my HRT because the estrogen may make the autonomic problems worse and the autonomic Doc said that the HRT may make it better. All I know is that I wish all my docs would sit down and talk to each other and stop having me in the middle. As to answer the question- Laparoscopy only way to dx the answer is only surgery can give the docs the inside view to see if you have it or not. As far as I know they can guess but until they look they really don't know for sure. I also know that being pregnant retards the growth of endometriosis and after my hysterectomy the gyn didn't want me to take HRT right away so the endometriosis would die off. So, what I am thinking is that maybe the estrogen hormone may be the common link.

I am on clonidine. I have very low bps. I take it at night with my elavil. There is a medication reaction when you combine those 2 meds that causes the bp to rise. The pharamicist made my doc fill out special forms before they would fill it. I also take midodrine. That for me is as needed if bps are low.

Hi there, Fibromyalgia symptoms can have a sudden and acute onset. Change in seasons, stress, illness etc can make those symptoms worse. I used to deal with that kind of pain all the time until the docs put me on elavil. Some days I have to increase the dose. If all the other tests come back normal, fibro is most likely the cause.

I have seen both doctors. I like Dr. Alshaklee for some things but I trust Dr. Chelimski with my life. He is the man you want to see. He has been my Autonomic Doc for 2 years. He is the best in Cleveland for Autonomic Disorders. Great bedside manners and he should be a comedian. I had a bad experience with alshaklee 8years ago. My symptoms would have been diagnosed if he had known more about autonomic disorders. His attitude was "it is all in your head" He has become more educated and as a neuro goes he is ok but Chelimski is the best. Both guys are involved in a study together right now. My sister has an appt with Dr. C this up coming week. We both have the same symptoms. I would feel comfortable telling you to see Dr. A but I am strongly urging you to follow up with Dr. C.

I have had numerous sx like these and besides silent TIA's they did a sleep study and found that i have several sleep disorders. It is worth checking out. Years ago I would wake up faster than my body and i was still in REM Sleep and i was totally paralyzed, tremors, electrical shock like feeling until i fully woke up.

I was born and raised in Ohio. I think there is a connection and I also think that people are being neglected in this state and others because a lot of MD's don't know about or understand dysautonomias. I see Dr. Chelimski at UH of Cleveland. Has anyone had some symptoms get better when in a different state or country? I went to the bahamas and tennessee multiple times since my diagnosis and my symptoms improve when i go to those 2 places.

Hi Anna, I am a diabetic and I have some form of dysautonomia and some other unpleasant autonomic stuff. I can say for sure because I also experience this especially since autonomic stuff worsened. He blood glucose is high. I get really tachy when I eat. I get high readings from salad with turkey breast >200 and without meds I bottom out 30 mins or so later <50. I can eat candy and stay normal. Her blood glucose can make her autonomic stuff really worse. Even if she in hypoglycemic. If she has raises, and I would be willing to bet she does, that effects the nerves and destroys them. If you have a glucometer, when she eats and gets tachy test her sugar. It is best to poke the finger and wipe away the first drop of blood because it has other fluid and tests are not as accurate with that first drop. (I am a Phlebotomist) See how that goes. Good luck. Lynda lllavallone@msn.com

Mrs. Glass i hear you. I can't take much more of this myself. As far as the brain goes, the cognitative thinking slows down. They say that is normal for dysautonomia. The doc said to me "You know the body and how it works, all of the normal body functions and systems that are autonomic are affected. Your brain is one of them." He said eventually your whole autonomic system will slow down and stop all together. That really gives me alot of hope you know? I have had a lot of these symtoms for as long as i can remember but it wasn't until 2004 that they stop blaming my emotions and started searching for other answers. Meantime I suffered many years with no treatment. This really stinks, if I can be honest. I don't know how some of you deal with all of this stuff. I am strong in my faith but it is just getting on my last nerve. Now I am so ****** that I can't stand being around myself, I don't know how my husband takes it sometimes. And sometimes he is just a jerk and thinking that i am being lazy and unwilling to satisfy him as wife is suppossed to. I hear you when you talk about being tired and tired of people calling you lazy. I have never been lazy. I always work hard. Now it is hard for me to do my job and i can't remember what it is I need to remember. I hate it. The doc has me working on some Chunking methods for remembering. You chunk words that go in the same groups. like states, colors animals etc. That has helped quite a bit. Thank all of you for being so honest with you sx, feelings opinions etc. It really helps people like myself not to feel so alone.

Thanks Gena

Some of the things you gals are talking about; the sx while laying down and being tired may be related to a sleep disorder. I get sleep paralysis alot and the docs just finally figured it out. I had a long sleep study that proved to be very benificial. Sometime our bodies start falling asleep before our brains do and that is a very big sx and disturbance with dysautonomia. Sometimes we get to rem sleep too fast or we wake up in rem. It is not very fun.

Good posting. I will have to say any and all abnormal body function. Think that one wish covers it all! hahaha

Hi Gena. I don't understand the Pre-diabetic state. I am insulin dependant and the endo just gave me that label along with tsh t3 and t4 abnormalities and some kind of adrenal mass. I am also interested in more of a holistic way of living and taking control of my illness any suggestions?

I feel a lot of what you gals are feeling. The doc's still haven't quite figured me out yet. It is one specialist after another. I have been very ill for 2+ years now and it is really wearing thin. I work in the medical field and my speciality is babies and children and since I get exposed to too much crap they told me to find another profession. That is like telling me to stop breathing. On the other hand it is better for me to remove myself from the situation. I have 4 children 17,19,21,and 23. Family life really stinks. This illness has really created tension in my marriage. i am so glad to hear that I am not crazy. It is sad to hear how many people are suffering though. I have a rather personal question and i hope someone out there is able to help me to understand this. I love my husband and I love being with him in every way but since this "funk" took hold of my life and body parts, things don't work. i can't get "over" the mountain, if you know what I mean and if I do it is really whimpy. Things hurt and sensations don't feel good. It is almost compared to being used and abused. The feeling of getting no where really stinks. I know that I am not satisfying my husband. I tried to talk to the autonomic doc and the gyn and endocrinologist and these men seem to think that that is normal for me and pretty much "get used to it" attitude or they just blow it off. any suggesstions? Thanks so much for all of you being so honest with your feelings and symptoms. I really don't feel so all alone anymore.

Because of anemia the docs want me to take a prenatal vit daily. I found a great product that works well and it is absorbed better and other products that take the harmful chemicals out of my home. If you are interested email be and I'll send you a link.

THANKS FOR YOUR OPEN-NESS LADIES. I AM VERY GLAD TO KNOW THAT I AM NOT CRAZY WITH THE LIGHTS AND OVER STIMULI. WHEN I MENTION THAT STUFF TO SOME OF MY DOCS THEY LOOK AT ME LIKE I HAVE 4 HEADS. THANKS FOR THE ADVISE. I'LL TRY IT AND I WILL LET MY HUSBAND READ THESE EMAILS HE THINKS IT IS IN MY HEAD. I AM SO SICK OF PEOPLE THINKING THESE SYMPTOMS ARE IN MY HEAD. IT IS REAL TO ME AND OBVIOUS OTHERS AS WELL. THANK YOU AGAIN FOR BEING OPEN.

THE DOCTORS TRIED A LOT ON ME TOO AND I DIDN'T TOLERATE THEM WELL. THE ONE TRIED AND TRUE OLDIE REALLY HELPS ME A LOT WITH THE TINGLING AND I ALSO HELPS DEPRESSION IS ELAVIL. I TAKE IT AT BEDTIME AND THE DEPRESSION HELP WAS A BONUS AND I HAVEN'T HAD ANY SIDE EFFECTS BESIDES DRY MOUTH AND TIREDNESS SO I TAKE IT AT BEDTIME AND I DRINK A LOT OF WATER. Sorry I didn't know about the caps rule

HI MY NAME IS LYNDA AND I AM FROM THE CLEVELAND OHIO AREA. I AM NEW TO THIS NETWORK AND I AM STILL IN THE WORKS OF BEING DIAGNOSED. ALL THE DOCS THAT I HAVE SEEN SAY I AM VERY COMPLICATED. IN 2003 I HAD GASTRIC BYPASS SURGERY. I WAS TYPE 2 DIABETIC. I LOST ALL MY WEIGHT AND FELT REALLY GOOD FOR ONE YEAR. THEN MY HEART RATE AND BP WENT VERY LOW, I GOT A BLOCKAGE IN MY INTESTINES AND I WAS PASSING OUT ALL THE TIME. MY GLUCOSE READINGS WENT THROUGH THE ROOF AND EVERYTHING SEEMED TO GO DOWN HILL FROM THERE. I HAVE DYSAUTONOMIA WHAT KIND THEY ARE STILL TRYING TO FIGURE OUT. I HAVE A LOT OF TINGLING NUMBNESS LIGHTHEADEDNESS LOW BP AND HEART RATE. I CAN'T FUNCTION, MY BRAIN FEELS LIKE MUSH. LOUD NOISES AND A LOT OF STIMULI SEEM TO MAKE THINGS WORSE. IN CASES WHERE IT IS "FRIGHT VS FLIGHT" I DON'T GET HIGHER IN BP AND HEART RATE MINE GOES REALLY LOW AND I PASS OUT. SOME DOCS FEEL THAT THE SURGERY MIGHT HAVE CAUSED IT BUT A LOT OF DOCS SAID THAT MY WEIGHT MASKED THE DYSAUTONOMIA. MY QUESTION IS- IS ANY ONE IN A SIMILAR BOAT AS I AM? sorry i just learned that all caps is yelling. i am not here.

SSRI'S TO ME IS LIKE A HUGE BOLLIS OF MORPHINE. MY HEART RATE GOES REALLY LOWER THAN NORMAL AND MAKES ME VERY DOPED UP. THE DOC HAS ME ON ELAVIL,CLONIDINE, TOPAMAX, MIDODRINE, AND LOTS OF COQ10,B-12 AND SALT

HI NINA, MY NAME IS LYNDA. I HAVE A LOT OF TINGLING AND I DO NOT HAVE POTS. THEY STILL DON'T KNOW WHAT IS GOING ON WITH ME. THE TINGLING SENSATION IS VERY WEIRD AND IT REALLY MAKES ME FEEL CRAPPY AND IT CAN BE VERY SCARY AT TIMES. ONE TIME I THOUGHT I WAS HAVING A STROKE BUT TESTS RULED THAT OUT. MY AUTONOMIC DOC IS ALSO A NEUROLOGIST. HE JUST RECENTLY SENT ME TO CHICAGO TO SEE ANOTHER SPECIALIST. NO RESULTS YET. I'LL POST THEM WHEN I GET THEM. DOES ANYONE ALSO HAVE A PROBLEM WITH DIABETES? I AM POST GASTRIC BYPASS AND I HAD DIABETES BEFORE THE SURGERY AND FOR ONE YEAR I WAS RID OF IT AND AFTER THAT DYSAUTONOMIA SET HOLD AND I AM REAL BRITTLE WITH MY GLUCOSE LEVELS. ONE THING THE DOC DID SAY IS THAT THE TINGLING MOST LIKELY IS FIBROMYALGIA. THEY PUT ME ON ELAVIL AND THAT DID SEEM TO HELP A LITTLE.