sandymbme

I had a husband who needed a "happy and healthy" wife. Operative word being HAD. I got sick 5 weeks after we got married, and our divorce was final 15 months after that. He abandoned me in every sense of the word, told me frequently that the weight I had mysteriously gained (turned out I had celiac disease, it came off, fast, two years later, and then some before I finally got correctly diagnosed, went gluten free, & am finally relatively stable) even though I was only a size 6. He would completely abandon me every time I had to be hospitalized, telling me that all his friends "at the bar" knew how sad he was that I was sick. My healthy-ish years ended sooner than I think they had to, because I destroyed myself trying to please someone who couldn't be pleased. And eventually, he gave up and walked away for good. Fortunately, by then I had a job with excellent benefits, so even though I was dirt poor, literally sleeping on an air mattress for the first 4 months I lived there until I could afford a bed, I was at least getting the medical care I needed. There is no doubt that stress contributed to my illness. Dr. Grubb has told me, many times, that managing my stress is the single most important thing I can do to manage my illness. And as I collect more and more diagnoses, that only becomes more important. I know that not everyone has the ability, or the lack of any choice in the matter, to leave. But I slept better by myself on the floor off that tiny, cheap apartment than I had in months. I turned to my friends and my church for support, mainly emotional because I have too much pride for my own good, but financial at times. I made th investment in my own future, and my own happiness, and spent two years in some pretty intensive therapy. And I learned why I kept making the same mistakes over and over again, and why I sabotaged relationships with decent guys. With a lot of help and support, I finally agreed to go out with a really, really nice guy. Who already knew I was ill, and wasn't scared off. And even in some of my worst moments, including breaking up with him when I found out about my EDS, and that I would only continue to degenerate. (In fairness, I really did feel that such a good guy deserved a girl who wasn't going to be so physically handicapped, in addition to all my emotional baggage.) In a little over 4 months, we are getting married. We have had tough moments, to be sure. And the days I do feel well enough to take extra effort with my appearance, he definitely appreciates it. But any man who can only be kind to you when you are all dolled up, even at the expense of your health and well being, does not really love you for you. The fact that my guy wants to cuddle with me, kiss me (among other things!) spend time with me even when I am too sick to get out of bed means more to me than I can even describe. Leaving and starting over, especilly in the middle of illness, feels impossible. And your individual circumstance may be one where it is impossible. But all the time I stayed with my ex in "comfort" cost me, and cost me far more than worrying about how I was going to pay my rent on a bad month. Not having to endlessly push myself beyond my endurance, (which was a constant with my ex) has made me feel much better emotionally, even if I don't always feel better physically. So if there is any way you can feel even slightly better, including not getting dolled up, and your partner doesn't support you, then they don't care as much as they should.

At the time I was dx'ed, I was also a retail department manager. working 50-60 hour weeks. On August 12 2007, (doubly memorable, because it's my birthday.) I woke with the worst migraine I have ever had. It lasted for 9 months straight. In the beginning, I rarely had syncopal episodes. I just could not shake the migraine, and eventually I started getting dizzy spells. I still wasn't passing out, but it was interfering with my work, tremendously. As I passionately loved my job, I just could not tolerate being so bad at it, even though my employer was bending over backwards to try to accomodate my illness. In 2008 I finally caved and got a desk job. And by 2010, I could no longer work at all. But prior to my illness every job I had ever had was on my feet.

I tried adderall, fairly early on in my journey, so at least 2 or 3 years ago. For me, there was not enough overall benefit to outweigh side effects and risks. The XR would keep me awake for exactly 12 hours, almost to the minute! But I didn't really see any cognitive improvement. I was awake, but not any better at comprehension, still "blanking out" on words, (which we STILL haven't dx'ed the cause or come up with effective treatment, sigh!) and getting lost, geographically as well as conversationally. That was the only drug in that class we tried, just didn't like the way it made me feel. But I'm glad for others it helps! Sandy

FWIW, as I mentioned in another thread, my first ever syncopal episode was when I was 17 in an aerobics class. With all of the postural changes in an aerobics class, I have never gotten more than 5 minutes into one without having a full sycope and a trip to the ER in the back of an ambulance. Almost 20 years later, and that is not only unchanged, but I have come to understand my POTS is caused by my EDS, which prevents me from doing ANY land-based exercise. The risk of dislocation, tears in ligaments and cartilage is just too great. I am, right this very moment, recovering from arthroscopic hip surgery. Cartilage holding my thigh bone in the hip socket tore, and proceding to shred the surrounding attached muscle. The Levine protocol would cripple me even quicker. Aquatic PT, where much of my bodyweight is supported is safer, but by no means perfect. FYI, I am 5'8, and currently weigh around 125, due to complications with my celiac disease. Prior to my onset of serious, progressive illness about 4 years ago, every job I had ever worked was highly physical, and I have always been in very good shape. My illness forces my increasing level of inactivity. To someone like me, who has aggressively pursued every possible treatment, only to run into what is essentially a genetic dead end, Dr. Levine's protocol comes across as downright offensive! Even in my case, with caution taken, exercise is beneficial. But it will never do more than slow the progress my disease is making. POTS has soooo many, widely unrelated, causes that we're aware of, it is potentially dangerous to EDS folks like me, to imply that everyone can benefit from a high impact aerobic exercise regimen. To the people who have had success and improvement, congratulations! And I mean that sincerely. But I really don't like the sweeping generalizations and disparaging "nicknames". When all of us are battling against something that is so little understood, and has dramatically changed our lives, to imply anyone's illness is a result of inferior efforts to me is ill-informed, and downright rude. Sandy

FWIW I have orthostatic hypOtension, and aerobics led to my eventual POTS dx. I can't go more than 5 minutes into an aerobic workout before all the positional changes do me in, and I syncope every time. My high school (this was early 90's, so no one knew much of anything about wny this was happening, and my PCP at the time eventually just gave me a note excusing me from gym until we were done with aerobics) did aerobics for a whole quarter, and by the time we were 5 minutes into the routine the ambulance was on its way to collect me! I also found, much, MUCH later (as in 8 months ago!) that I have EDS, and I am sure that plays a large role in my exercise intolerancve as well. Sandy

Sadly, despite being the daughter of a nurse and a pharmacist, these sorts of medical texts tend to be completely indecipherable to me. Can I just take your word for it, Issie? Sandy

I don't think I have ever "reset". In fact, I have to be super cautious after I have a syncope issue, because I am very, very likely to just keel back over again when I try to get up. There have been episodes where I have been stuck on the floor for HOURS, because every time I try to get back up again, I come crashing back down. Today, in fact has been pretty bad, have had three full syncopes, and dozens of near syncopes. DISLIKE! Sandy

This is good news! There is far too few resources to turn to for diagnosis and treatment, and the west coast has been terribly deprived! Yay! Sandy

I have been there, and as another poster said, it truly was for the best in the long run. She told me rather bluntly she could not continue to manage my care because I had just grown way to complicate, and with her (admittedly very large!) patient load she could not manage me the way I needed, coordinating care, and being the "gatekeeper" over my meds. I ended up interviewing several, and got really, really luck finding my PCP who was just starting out in private practice, but had been an ER doc for years. So she had seen all kinds of bizarre issues over the years, and was unfazed by me. She goes to conferences several times a year, constantly seeking to expand her knowledge. She has never given up on me, and even with my laundry list of illnesses, she is still convinced that we can eventually find the best combination to give me the most relief possible. Like night and day from my old doctor, I had really liked her personally, and didn't want to lose her, but I have since learned it was truly best for my health in the long run!

My PCP is a "integrative" or "fundamental" MD, which means she is just as likely to tell me to get a specific herb, or preparation that contains a variety of herbs, as she is to write a prescription for say, antibiotics. She firmly believes that health is managed beat when you use the best tool for the task at hand. So she has me on: Boswelia- an anti-inflammatory herb used for GI tract inflamation Vitamins C, D (10,000 IU per day) folic acid, B12, and acidophilus pearls. Inflamm-X from metagenics- a powdered drink mix that has complete, highly digestible, nutrient formula to help kind of tide me over when I am too sick to eat. Sandy

I can't believe they don't feel EDS is very serious! Especially when there is some pretty darn good evidence that says in has a causal relationship to POTS! I have both, and a few other things as well, but my EDS probably causes me the most complications, the most pain, and impacts my life the most. Especially since it can be degenerative to a lesser or greater degree. In me, my EDS, POTS, celiac disease, and osteoporosis are all interwoven in a vicious little circle and exacerbate each other in all sorts of unpleasant ways. I would strongly encourage you to seek out a second opinion. PS...This journey of trying to find the best diagnosis and gain the clearest understanding can be fraught with frustration. I will be keeping you in my prayers, and in the meantime, I highly recommend Dr. Brad Tinkle, PhD's book, "The Hypermobility Handbook". It is written for patients, so very straightforward to read, and chock full of all sorts of good infore to help you take the best care of your self possible. Sandy Sandy

A couple thoughts- First- Dr. Grubb asks me every time I see him how I am managing my stress. Not because he doubts my illness, on the contrary he confirmed on dx and was the one who originally caught and dx'ed the cause of my POTS. But he told me that stress if the biggest, most common trigger of bad "flares" of the illnesses, and that stress has a negative impact of the physical health of ANYONE. What stress does to one's health is NOT imaginary, or psychosomatic, or insignificant. Stress can put you at much higher risk for heart attacks, strokes, various types of cancers, the list goes on and on. so even if stress is linked to what is making you ill, that in no way means that you are not ill, and it absolutely does not mean your physical experience should not be treated medically. Second- Dr. Grubb has also told me on numerous occasions that if you are dealing with a chronic, incurable illness that has as much of an impact on one's day to day life, that alone is extremely stressful. Managing your stress helps to give you the perspective needed to be able to keep better track of your symptoms, which in turn helps to identify patterns and triggers, which is a huge factor in your doctor diagnosing the root problem. I am currently on a a SSNRI called cymbalta, which I fought tooth and nail trying not to be only any meds that were anti-depressants or related to anti-depressants. My major concern was that as soon as a doc saw that medication they would immediately dismiss me as being "crazy". And if I was crazy, then no need to treat me, right? I won't lie, I have had some bad experiences over the last several years, most of us have at one point or another. But I now kind of kick myself for not giving in on this med much sooner. While I don't love the side effects, (or the price tag!) cymbalta in particular has proven to be effective in helping to manage chronic pain, and it is stressful to have an illness where you might not ever get better. That can often be very difficult just to treat. So try to keep in mind that treating your mental health is part of treating you, but only PART! As for your current situation, I have been in a very similar spot, and it can be maddening. My mom, a retired nurse, gave me this suggested phrasing for when I am getting nowhere with a doctor, pointing out to me that very few doctors care much about diagnosing anything. They really just want to treat you, get you stable, and get you out the door. I have to admit, this phrase seems to do wonders when I am ready to throw things at doctors who are being dismissive and condescending: I appreciate the suggestion, and would love to explore that. However, that course of action has not/likely will not reduce my pain/prevent my fainting/stabilize my vital signs. These issues are interfering with my ability to care for myself and others, as well as with my ability to work. Do you thing a tilt table test/eeg/ekg/mri/insert desired test here would better pinpoint exactly what is going on with me? And what sort of treatment do you suggest while we try to clarify this AS WELL as managing my stress? And when would you like me to come back to discuss the efficacy of this plan?" I thought it was a bunch of ego petting to no great end, but I was forced to thank my mom when the specific doctor (an internist who was insisting nothing was wrong with me despite the copper coil {from a tubal ligation procedure} that had apparently managed to migrate back into my uterus, and ended up causing an emergency hysterectomy last year!) did a complete 180 in his treatment. The fact that I wasn't asking for anything specific, and thanking him for his suggestions, actually worked! In the meantime, as I think someone else in the thread mentioned, start keeping a detailed symptom journal. You can pick up an automatic blood pressure cuff at most drug stores for around $30 or so. The machine will also give a heart rate, which is not quite as responsive or accurate as a pulse ox, but will do the job fine for your purposes. If you can squeeze in time in the mornings, keep the meter on a nightstand or somewhere right around your bedside where you can reach it in the mornings without sitting up or getting out of bed. Take a laying pressure, swing your legs around and carefully sit up on the edge of the bed. Wait at least 10 minutes, and take another reading while you are sitting. Carefully stand up, (standing up after laying down to sleep all night is one of the very high risk moments in the typical day for a syncope, or faint, because of the position change after laying down for so long. ) wait ten minutes, but feel free to support yourself with a cane or hang on to a dresser or such. Taking a bad fall is NOT the goal! Take the final reading. Write all three measurements, laying, sitting, and standing every day for at least a month. All of us have good days and bad days. You may have had a good day in his office, which is why it can be so much more beneficial to do the readings daily for a fairly extended period of time. You are more likely to pick up readings when you are not doing so great. In that same notebook, or excel spreadsheet, or however you want to track it, make sure that you also make note of any headaches, migraines, nausea, and/or pain and the location of your pain. Write down what you may have taken or done (gentle stretches? meditation? cup of tea?) for your pain, and if it helped. I know this sounds like a lot of work, and it is. But doing a record like this is the best tool you can give your doctor to help him figure out what is going on with you, and what tests you would benefit most from. If he still isn't much help, fire him and take your notes elsewhere. Good rapport is actually really important, in order to get the best care you have to feel comfortable enough with your doctor that you are willing to share any and all issues. Keep in mind as well, there are many forms of dysautonomia, and while POTS is the most common, (I think? Correct me if I'm wrong, somebody! ) there are actually many types of these illnesses. SO even a negative POTS diagnosis would not necessarily mean you don't have an autonomic systems disorder. There is a ton of good info about most/all (?) types on the dinet.org main site. Hope this wasn't information overload! Feel free to PM me if you have any questions, and good luck! Sandy

I gained about 30 pounds or so when I first got sick, and then last year my weight plummeted, for no reason we could easily tell. After a lot of false negatives and dead ends, I finally ended up with a diagnosis of celiac disease. My weight stabilized for a minute, and I got back up to about 140, (I am 5'8, so at 140 I am still pretty slender.) but my symptoms have gone completely haywire, and my POTS, EDS type III, celiac disease, and osteoporosis are all exacerbating each other to a horrible degree. I have lost even more weight, am now down to 124, which is less than I weighed my senior year of high school almost 20 years ago. I got constant grief back then from friends and family that I was far too thin back then, at 128 or so. My fiance has been horrified at the disappearance of my rear end, and is strongly suggesting I need more milkshakes and such in my life. Like several of you, though, my weight fluctuations seem to be a result of my assorted dx'es, rather than triggering the flare. Sandy

Hooray! It makes the journey so much less frightening and overwhelming when you start to feel like you have the right "team" of physicians, working with you, not ON you! Makes all the difference in the world when a doctor displays real interest and concern, and tries to treat you as an equal. So glad you found a good one! Sandy

I am currently being treating for a very similar sounding rash, raised itchy red bumps, but small, about the size of the tip of a pen, or slightly larger. My doctor said she suspected foliculitis, which is a type of staph infection of the skin. So we are treating it with a 10 day course of Ceftin, (YUCK!) and we'll see where we are at once I am done with the antibiotics. About 2-3 months ago I also seemed to develop a nail fungus in my left big toe, which completely grosses me out. So we starting a long course of oral Lamisil for that, but she will be carefully monitoring my liver enzymes, as she said Lamisil can cause elevation in liver enzymes and I have had issues with that in the past. But I also get celiac rashes, and I saw a cymbalta commercial recently that warned some patients experience rashes! So I am not sure what the real culprit is. I had no idea this was so common though. As for purple veins and red veins, I am starting to get a ton of spider veins all over my legs, which I was kind of chalking up to age. (I am 36) But my doctor told me that they are most certainly NOT normal for my age, and that after my surgery this week we would be taking a much closer look at that. It's always something! Sandy