MotleyLori

I confess to these also, in dreams. It is the same smell, which I can not identify, and I always wake up that day with bad symptoms. Lori

Julia, I was seen there by Dr Wenstrup and I have HEDS and POTS. You should find the visit worth the time and money, as they at least understood my symptoms and were the first doctors that could tell me before I told them what some of them were : ) Aside from that though, I did not learn anything that helped me deal with my pain, fatigue and heart rate issues, so I am still working thru these. EDS is a journey is all I can say, one day at a time. What I do believe though is that when we learn what we have (EDS) it enables our children to know decades before we learned and therefore they can take steps earlier in life to protect their joints, understand the need for sleep, proper nutrition, exercise etc. I did not know until I was 42 y.o. why I had so many strange problems and I chose to work as a nurse, lived a very physcically demanding life and now have arthritis and pain to contend with. Not to say I would not have it anyway, but I could have lived a little more "sedately" perhaps. Hope you find them helpful! It is kind of interesting checking in to the childrens hospital as an adult. Lori

Prevacid did absolutely nothing for my GI symptoms. Nexium gave me a terrible dry mouth and did not help me. It seems to me that they are throwing darts at me blindfolded because they don't know what to do. I hope you have better luck than I did with it. I works great for my husband, but he does have GERDS, not EDS, POTS. Lori

Helps my muscle pain and spasms greatly, Lori

Linda, From what you posted I would concur with others regarding unethical and abusive. Some of the things you describe are clearly not appropriate behaviour from health care providers. I do applaud you for finding a silver lining in the dark cloud, but now I am even more fearful of "signing on" to a pain managment program. I have tried 2 so far, both with dismal results. It does not bode well with me to be treated like a common criminal or like my pain is psychiatric. Never will I consider the Cleveland Clinic Pain Managment program and I thank you for alerting us to your experience. Lori

Hmmmmm, I tried speaking with an ombudsman at the famous CCF a couple of years ago regarding another area of that world famous institution I have read great things about the clinic in Chicago and I would love to be able to go there and give that a go. Again, sorry for your experience, Lori

LindaJoy, I just read your post and don't know whether to laugh or cry. The doctor at Cleveland Clinic must not have read a medical journal since he got there in 1979 for starters. If that "if you ignore it, it will go away" worked most of us would be well by now as we had years of doctors ignoring our vague, but troubling symptoms. Does that work for heart attacks and diabetes also??? I do understand when pain becomes chronic and non-productive that getting our minds off of it is helpful but . . . there are limits to the rule. We have to know when pain is important and when it is self perpetuating, which is not implying that the pain is not "real" pain. I hope you did not have to pay $$$ for the "help" you recieved there. Am I allowed to post these strong opinions here??? I hope your family doctor is meeting your needs and addressing the issues that need addressed medically. I guess that for all of us with a chronic anc confusing condition that there is a mental component but that does not mean that we don't have physical issues. Personally, I feel all health issues are physical as the brain is run by chemical! Lori

I can't tell if better or worse after surgery because I am also older, so it all adds up.

I want to say thank you for the site also. I have POTS and EDS and it seems the POTS causes as much, if not more grief than the EDS and all of the posts and responses on this forum are very helpful and reassuring to me. It makes me realize that I am not a "rare" specimen, not a hypochondriac, not alone and that there is hope and there will be a brighter day. This is a great web site, Lori

Susan, Just want to echo what the others have said and tell you that I understand what you are going thru mentally with having to accept that you can't always do everything you did before. It is so hard for those of us who were active and enjoyed what they did to have to admit our limitations. 2 years ago I denied that the doctors were finally right about what was wrong with me and was sure I could prove them wrong. There is a kind of peace to the acceptance and it actually has improved my days that I feel good. But, it takes time to get there. We have a right to grieve the losses and worry about the future. And then there is time to hand that worry over to a higher power and live for today. Seems for most of us, these severe symptoms wax and wane and sometimes the good spells go on for a long time. Hopefully, that will be the case for you. Ditto what everyone said about food and snacks at all times. I keep saltine packages in the car because when I get hungry, I get very symptomatic. Also, my own opinion, people who can "listen" to their bodies and respond early to symptoms seem to be more in control. I spent years denying pain, fatigue, pounding heart etc. because I wanted to be strong and not a problem to anyone. It was not a good thing and now I need to backtrack and learn what my body is saying. Be nice to yourself and try to remember also, that there are researchers that are very interested in these dysautonomias and every new day brings new hope. More people are being taken seriously and being appropriately diagnosed. We used to be written off as "hysterics" : ) Lori

I have Raynaud's. It was the first part of this syndrome that was diagnosed in me over 20 years ago. No one gave my EDS or POTS a name until 2 years ago after years of looking for answers on my part. My hands, feet and most likely esophagus are affected. For me it is more than an annoyance. I used to hike and hunt, etc in the winter months. I developed lesions (chillblains) on my toes from the Raynauds. These are purple, painful lesions where the blood forms blisters under the skin, first they itch, then they hurt, then they turn purple,black and take a long time to resolve. It seems our brains over-respond to what they percieve as cold and shut down the small vessels to divert blood and oxygen to the brain, heart, kidneys. Raynauds is considered more of a nuisance than anything else. Keeping warm and calm helps most people. Do a search on the Raynaud's Association for more info! Lori

The drugs - it's the drugs. They use a sedative that keeps you awake enough to breathe and somewhat follow commands but creates amnesia. Lori

Have you tried swallowing it whole in a bite of applesauce or pudding? That is what we used to do when I worked in longterm care as so many elderly folk had trouble swallowing. I have esophageal dysmotility so I have the same issue, Lori

Do a quick search on Dr Blair Grubb and there is an article that mentions allergies causing histamine release which increases heart rate, etc. Mold is a potent allergen to many people but we can be allergic to anything. Lori

Does anyone else here have Raynaud's and use beta blockers? I am starting back on atenolol dut to tachycardia while weaning off narcotics. Have terrible reaction to Toprolxl, severe epigastric pain,sudden onset, lasted for over 12 hrs. Took nitroglycerin with only a few minutes relief. Just wondering if those of us with Raynauds really have to avoid the beta blockers all together? Lori

Nadine I understand the "full" feeling also. I really think that our symptoms evolve with age and also I am not sure how much medications, environmental exposures, stress etc change us differently than the majority of people. We are just "special". Am sure that is not what my doctors are thinking, but oh well . . . No, I did not have an EGD, they should have done that but I guess since the working diagnosis was dysmotility and they expected to find achalasia ( prob not spelled right) they did not do it. Now if the protonix I am trying does not work, will be getting the EGD done after all. Lori

Oh, so I am not the only one with these issues??? I was afraid to even ask for fear of being thought silly or a hypochondriac etc. About 20 years ago I developed Raynaud's phenomenon in my hands and feets. Shortly thereafter, I started having severe chest pain whenever I swallowed cold liquids. Flash forward to last year. I was burping all the time, very unusual for me, and I was having more trouble swallowing, felt as if "sticking in throat" Upper GI showed dysmotility with "waffeling" of contrast. It did not show GERD or hiatal hernia. I was referred to a GI doc at UM (whom I cannot see again until OCT, another story there). She felt that is was probably made worse by my pain meds and ordered an esophageal manometry study. Hint here - never have one of those if you can avoid it. It showed Nutcracker esophagus, abnormally strong esophageal contractions. I was unable to keep the 24 hr acid probe in to see if I indeed had GERD. They decided to treat me as if I did have it and I have failed every proton pump inhibitor so far, they do not work. Just started a trial of protonix, it makes me nauseated. I have the hungry, gnawing feeling, the burping is better after weaning pain meds. My GI tract is very overly sensitive to any stimuli. I think it is part of our dysautonomia wiring that causes all of these things. The vagus nerve travels to the heart and stomach. It is possible that when you only partially vomitted that your esophagus "burned" from the acid and will need to heal. If you don't see some improvement on the Prilosec please see your doc because even though those drugs are all "proton pump inhibitors" they work differently for different people. My husband does wonderful on Prevacid, which did nothing for me. But then, he really does have GERD. Maybe that is the difference? Feeling your pain, Lori

Allergies can cause POTS symptoms in susceptible people if I read the literature correctly. Histamines cause the heart to beat harder and faster. Mold is a well know allergen for a lot of people. Lori

Anyone take labatelol for tachycardia? Thanks Lori

Jacquie, I can tell from your posts the past few days that you have just been miserable. Reassuring you that you are not alone and I feel you frustration. It is hard on days that we have energy not to overdo. Try to limit that walk to 1/2 of what you feel capapble of and eventually you will feel capable of more, but try to stick to 1/2 of that. Easier said than done, I know. The past 4 days I have been so tired and unable to sit up without yawning. Am sure my husband will get tired of me, as this is such a departure from the way I was before all this started 3 years ago. It just stinks and I hope you get to feeling better soon. Be nice to yourself, get your exercise but in moderation. It takes quiet awhile for us to build up endurance, seems it goes away much faster than it comes back! Lori

Lets not forget that the doctors themselves that are pronouncing judgement upon their own, might not be the most mentally stable. They also are susuceptible to mental illness, malingering, drug dependency etc. Medical professionals in general, seem to be too quick to pass judgement without considering all the puzzle pieces. Sorry you have had to deal with so many "dramatic" labels before being taken seriously. Been there. Lori

Anyone else? No matter how much I drink during the day I rarely go to the bathroom. But at night after sleeping for a couple of hours I have to urinate large amouts of dilute urine. Sorry for the gross question but wonder if I am alone and what the cause might be? I am not diabetic. Thanks Lori

In my case it was used against me. They decided I was not "depressed enough" to need SSDI regardless of my physical condition. When I was denied upon recondsideration they said I did not qualify because I could still "think and communicate". So if you are depressed don't hide it from them thinking they will use depression against you. It might help you. Just my experience, Lori

Me too. Have had this since early 30's so is not due to "menopause". Doctors like to blame it on hormones, but it isn't. At least not those hormones anyway. Lori

Here is my abbreviated story: Life time history of easy bruising/bleeding. Kyphoscoliosis as teen, wore brace for 3 years. Hospitalized with tachycardia as a teen/no cause found. Tachycardia,lightheaded again in 20's. Excessive bleeding with childbirth. Functioned reasonably well, worked greater than full-time. Around age of 30 started have severe fatigue, night sweats, aches, pains. Blown off by many, many doctors who suggested it was mental. Post knee surgery in 99 had large amt of bleeding into leg. Very slow to recover, no energy. Post abdominal surgery in 2003, developed large bleed in subcutaneous tissues. When they were unable to find the cause, I found out about EDS online and the diagnosis was confirmed by 2 geneticists. Then I was diagnosed with POTS last year. I have bad Raynaud's, venous pooling, GERD, nutcracker esophagus, POTS, palpatations, migraines, platelet disorder, osteoarthritis of several joints,chronic pain and the worst - severe and unpredictable fatigue. There are many other symptoms that I have not listed. There were many instances of missed diagnoses and inappropriate care from the medical profession. Unfortunately, I know that this is the typical story, not the exception. I can not give up on trying to find a treatment that works to restore my energy so that I can somewhat live the life I want. Yes, I am trying to reinvent a new life for myself that will not leave me feeling bored and useless and it is not proving easy. I have been denied disability on the first application and the reconsideration. Now I have to wait for a hearing. It took me 2.5 years of not being able to work to even apply as it was not what I wanted to do. I wanted to return to work, still trying to figure out what I can do with any type of regular schedule. Thank you all for welcoming me to your site. Lori