comfortzone

I remember a couple of you mentioned you get orthostatic hypertension or had that result on a tilt table test ....... Can anyone share more about how your doctors treat it or if they treat it? I was increased to 50mg of Metoprolol from 25mg a week ago ~ thus far my heartrate has decreased so it's in the nineties at it's highest ~ better than the avg. hr on holter of 100. My blood pressure though is now low/lower with rest ~ well low for me who has high blood pressure ~ 99/60 ~~~ But today with mild/light housework it's right up there again to 156/105. So it's been about a month now on the beta blocker (plus my own 320mg of Diovan) ~ And I'm getting nervous about this cosistantly high orthostatic blood pressure. The doctor had me stop my diuretic so I don't know if that's contributory. Cardiology wasn't taking me all that seriously it seemed as while the nurse proved it out in his office with a sitting, standing and lying B/P demonstrating my issue..........he simply said, "so you had a higher pressure today" and a few other blow off statements. I went from 130/90 to 150/110 with sitting to 160/110 with standing...... I can reproduce this any time of the day by lying and standing....even with the beta blocker and my other b/p med. Any advice on how to approach my primary care doctor with this? Is it unusual as a rule for dysautonomia? Mine presumably is from EDS/HM or what is aka Hypermobility Syndrome.... If I knew more than I had this and knew of a treatment program that's worked for others I could bring it up in conversation with my doctor perhaps....... (Underlying my question is great concern about the possibility of a stroke if these high pressures continue as they are) Thanks everyone!

Thank you all so so much for your invaluable inputs ~ I see my primary tomorrow .... to see where she's at with all of this. If I'm brave I'll tell her what the neuro is insisting upon...... Or I may decide to just share with her my desire for formal diagnosis of the dysautonomia ~ and give her my blood pressures written down. Great idea to ask the HMS doctors for the cardiology referral! I'll as the primary what she thinks about that as well ~ I'd like to get her more involved in my care ~ I've done all my detective work myself thus far.......as she never seemed to want answers as much as I do for unusual symptoms groups..... What's so frustrating is the team of specialists I've had to see and that I currently see was created by me~ Yet each of them asks ~ who is the "main" specialist caring for my HMS. Truth is I don't have one. The USA doesn't have clinics that treat this -- and the accompanying symptoms such as dysautonomia just plague you ~ chronic pain ~ plagues you..... You deal with each symptom by the doc that treats that symptom ~ and with connective tissue disorders ~ well your entire body is affected. I do have a primary ~ but she seems to be the least knowledgeable or perhaps just the least interested is more accurate. I'm so impressed by your answers and caring ~ ~ !!

Hi :-) I would recommend a couple of books for you to look at. One is reasonably priced and you can get it on Amazon.com by Dr. Brad Tinkle ~ Issues and Management of Hypermobility Syndrome/ Ehlers Danlos Hypermobile Type (or something like that). Dr. Tinkle is from Cincinnati Childrens Hospital and is this country's leading guy by all I can figure ~ on this topic. He is a Geneticist ~ and will also be the keynote Speaker at the Ehlers-Danlos National Foundations 25 year anniversary conference in Baltimore this summer. There website you can google -- it has a wealth of information too.l From what you've shared I would think you could learn a lot from that book and there is another by Rosemary Keer and Rodney Graham The UKhas clinics for patients with this hypermobility syndrome & Ehlers Danlos Hypermobile Type. That book is written for physiotherapists and is very good as well ~ though it was pricey for a small book ~ around 70 dollars I believe. But there are other more serious forms of EDS than the Hypermobile Type or Type 3 ~ this needs to be checked out. Symptoms seem to overlap in some of these 6 or so different types of EDS. In it is discussed the issues you raise that you are dealing with in your daughter. It can be hard to do your own detective work as the number of knowledgeable clinicians in the USA seems to be about the same as the POTS story ~ they are few and far between. AND with the studies I found on line by Dr. Bravo ~ now practicing in Chile ~ up to 75% of HMS patients deal with dysautonomia symptoms. This is where I'm at ~ I got the EDS-HM diagnosis ~ now nailing down the POTS part of the story....yet to be formally diagnosed and looking for a good clinician in California currently - I'm in my 50's The person to diagnose and evaluate your daughter from what I've read (& what I did myself) is a Geneticist.Trying to find a Geneticist that is knowledgeable about EDS is challenging as well. But it is this group that can confirm a diagnosis for you ~ which might be a valuable bit of information as she grows into an adult. I believe Dr. Tinkle takes new patients ~ I went to UCSF in California ~ and while they have knowledge of this -- often if you are like me you spend time doing your own research and find yourself in a position to be the one with the most current studies and information - which at times can be uncomfortable for both the doc and the patient. There is no cure that I know of. However there can be a great sense of relief to know what you are dealing with and that it can be dealt with. Most often with a team approach ~ Physical and Occupational therapy, pain management, rheumatologists, pediatricians, orthopedic surgeons, counselors ~ I mean there is a gamut of people on the teams over in the UK at their clinics ~ and I have created my own for myself to deal with this. It's hasn't been easy ~ and you do endure the unpleasant visits where doctors think you are crazy or some such thing.....all the better to get a solid diagnosis. Also it's no small thing that EDS has several kinds ~ some of the more severe types really do come with issues that can be life threatening. Where my type is not one where there is some life threatening issues -there is the vascular type that does need to be monitored throughout a lifetime by competent EDS doctors. This isn't to alarm you at all ~ but to encourage you to get your self well informed so you can get the best possible care for your daughter. You are to be applauded in bringing to your pediatricians atention the symptoms and your intuition that a collagen defect may be the root cause ~ I would agree with you. I wouldn't push this under the rug ~ but rather get informed through books and websites such as the EDNF.org one and I've also learned from the Hypermobility Association website that is based in the UK......Once you have your information then you can push forward in getting appropriate diagnosis and a treatment plan....... Your first stop may be to get a diagnosis from a Medical Geneticist ~ whom your pediatrician may refer you to ~ they shouldn't hesitate -- as there are plenty of symptoms that have manifested ~ plenty indeed! The one to pull it all together would be a specialist beyond your family pediatrician imho....

Bless you all again ~ Very valuable your insights! I'll ponder these things today and see what I come up with. It's so true how these doc's are only human and full of human frailty ~ yet we go to them for expert opinion and advice -- semi-trusting ~ sometimes we get a 'hit' and things move forward ~ sometimes we get a miss and can spend virtually countless dollars and hours undoing the damage of a miss if it's big enough. Psychiatry has some hot shots that are really talented, use medication sparingly and appropriately and will direct patients to therapy or counseling for psychological issues and to doctors for medical issues ... some even provide that therapy without meds if appropriate ~ the psychiatrists of old! But in today's climate it's cheaper for insurance companies and a doc to write for a pill than to address the issues causing symptomatology and prescribe needed trauma therapy or whatever specific therapy is needed for healing. I know hypermobility syndrome is so little known by all my medical team ~ I'm not surprised I had to learn about it myself being a nurse for 25 years I never had heard of it! It's hard to not have one person knowledgeable kind of championing my care and directing treatment ~ everyone kind of looks at me with a blank stare and say, "what's that?" Add to that this cardiac aspect of dysautonomia that coincides with hypermobility syndrome and the doctors here show they feel as lost as I do and they wish I had an "expert".... Who is the most valuable member of your health care provider team with dysautonomic issues? This local neuro says she only deals with it for patients with demyelinating issues and some other cause which I can't remember ~ but if it isnt' those two things causing it ~ she claims to be out of the picture. Is she correct? Or do some of you see neurology for your care? I think if it's warranted maybe I should see a new neurologist locally ~ but my pain guy (he doesn't know about this dysautonomia thing yet) said to stay away from them because I'll only frustrate them ~ my diagnosis is one that stumps many. Do some of you have cardiology as the main diagnostic person who takes care of your meds etc? Because if mine is uncomfortable as he's semi-verbalized ~ perhaps I should ask him if he can learn from his colleagues who might be better suited ~ they are so much more comfortable when in the zone of their expertise.......Of course I'd have to be very tactful in that lol.... I guess I'm kind of confused right now ~ I like the idea of gathering data for a letter to the one guy asking for his consideration for an add-on note somehow retracting his ideas ~ I may ask the ones in the genetics dept. how to handle this as well ~ It's all as clear as mud right now. Maybe if I can find someone who's willing to do a tilt table test and actually handle diagnosis (by my cardiologist or hiring a new one) ~ they can help me.... I have enough problems now without adding a psychiatrist to the list ~ you've helped me to see this and helped me in other ways as well ~ thanks so much!

Thank you all so much for your quick response to my query! That means a lot..... It never hurts to do a reality check when someone is facing something that finally begins to seem kind of clear-cut ~ suddenly challenged out of the blue ~ by a person in an authority position. So I thank each of you for your thoughts ~ I do value them! I've read your comments a few times to let them sink in ~ I read lot's of wisdom through what you each have been through.... You each raised very important aspects of my quandry & to read your thoughts in black and white is so helpful ~ it's validating. So for now I'm going to just take this one day at a time.......I'm saying no to psychiatry eval and I'll ponder this other neuromuscular appt she wants me to go to ~ His approach is to do a muscle biopsy and repeat all testing and imaging you've had done anywhere else as he wants things his way. That sounds like a lot of money as he's out of network ~~ and I'm in medical debt right now already. I wouldn't mind speaking with him though ~ Yet don't want to be caught in the web of saying no to tests he orders -- showing non-compliance. So I probably should just cancel it ~~ I'll have to pray on it and see what comes up to do .... then do it. Right now it's these cardiac issues that have most of my attention ~ that and these joint replacements that are acting up quite badly. It really disturbs me this young 'wet-behind-the-ears' dept. head having the nerve to go beyond his scope -- stating that in his opinion my weakness or fatigue is not caused by a neuromuscular problem......but by psychological issues. If I think about it too much it's pretty darn maddening. How would/could he possibly even KNOW about someones supposed psychological issues in a one hour physical exam testing strength, gait, etc ~ when he sees likely thousands of people? And if he knew what his careless words do to a patient that has real health issues of the medical kind to be dismissed or not believed ~ then dump upon them a whole new world of problems called "psychological" problems! He may be book smart ~ or just lucky ~ but if he keeps up with this kind of behaviour ~ well his future may not always be so bright ~ someone will be harmed through his dismissiveness for things he doesn't know or understand. I do try to keep faith ~ and that helps me when I feel cornered as I did this afternoon ..... You are so much appreciated so a big thank you!!! Hope some day I can look back at this and laugh ~ & maybe help someone else through my story :-)

I think I mentioned in another post that one of the doctors in my year of seeking diagnosis for what seems to be hypermobility syndrome with concurring dysautonomia ~ a neuro specialist ~ saw fit to say he believed my case to be psychological not neuromuscular. Well after that I got the hypermobility syndrome confirmed at the same medical center and was going to leave it at that (yes it's not neuromuscular but it is not psychological). Next happens all these blood pressure, pulse, and fatigue issues and I run it by the local neuro who says it's definitely dysautonomia likely from the collagen issue of hypermobility syndrome - please continue on with cardiology for treatment. But because the neuro at the big university medical center said psychological I should definitely see a psychiatrist to somehow prove him wrong. I countered with I feel fine ~ no issues currently ~ the neurologist simply said "counseling can help fatigue" which has nothing to do with psychiatry. She then says that it's one and the same and that I need to see one so that if anyone looks at my records they can take me seriously. I say entertaining going to a shrink when I don't need one is suspect and why would I do that - what sane person would? She says you should just do it for completeness. I then began to think she was the one that was daft ~ not I ~ even though she's a really nice person. She also thinks I should go to a different big medical center and see their neuromuscular specialist who is one of the world's best. I asked, "why?" if we are sure I have hypermobility syndrome with dysautonomia? She said just to check it out for completeness. So what do you folks think? She suggested I do this back in January and I didn't because I thought it was ridiculous and a waste of money and skilled doctors time and energy as well as mine. Now she called me up just because I sent her the genetics report and had me come in. To what? Feels like being brow beat into doing something I have no desire to do. Would love to hear your inputs on this..... Is she just being pushy because she was insulted I didn't do the two things she suggested? For the record ~ I'm "normal" lol.... No psychiatric diagnosis ~ appear normal, act normal, work in spite of this disability, have worked very hard at figuring out what's happening with me etc....have family and friends who laughed at the idea of me having a psychiatric cause to my physical problem..... I considered it a badge of honor to be told it's all in my head (quite typical of difficult cases) ~ But now I think I'm being hassled and not liking it one bit!

I used to love going to the Abbey of Gethsemani on retreat when I lived in the Midwest ~ I'd go once or twice yearly. Now where I live there is a cloistered group of monks ~ Benedictine ~ living in Big Sur that offer retreats. Your note prompts me to give them a call and spend a little time up there...... Would love to hear how your retreat goes if and when you get there ~ Have a great rest of the week :-)

Thank you so much for answering ~ so fatigue or running out of gas IS an experience that can be wrought by these autonomic changes....I so appreciate any and all who post to this..... Like some of you ~ easily my worst time is the very moment I open my eyes in the morning. I can so relate to actually getting to almost 'fear' the mornings ~ yet I do not give into that. This speaks more to the pain & stiffness experience ~ and meds do finally kick in and I'm off to try and "normal" the day away ~ And as many of you the tank does run dry. I've read that pain can induce feelings of tiredness ~ but it seems to me there is more to it than that....and that it must have to do with these widely varying heart rates, rhythms and blood pressures. My pain meds do help quite a bit ~ but don't impact the lack of energy. I do not feel like the pain medication is causing somnelence or sedation at all ~ I'm wired and fatigued at the same time. I do generally feel a fresh start if I am able to lay down as you've mentioned 'before' the point of being made to because of symptoms......I guess you'd call it pacing activities. I know something is wrong because this job I have is one that I truly love and it too like mornings are faced with dread because of how beat up I feel. Yet a sedentary job I can't see as being that much better an option ~ as I feel the need to lie down even if I'm just at the computer typing as I am now. I am now on 50mg of Metoprolol ~ I guess it's supposed to cut down on sympathetic outflow per the package insert.....if it were that easy I think all of us would be on Metoprolol. So far it hasn't produced the effect of less palpitations ~ which I could see frustrated my cardiologist. I began with only 25mg a couple weeks ago. These are relatively low doses because they fear you will get low b/p with too much of it. My pressure again today at awakening was about normal 118/70 ~ standing it is again 140's/110's. Additionally I feel a completely new type of fatigue that I think is Metoprolol med-related. I think it will fade as my body gets used to it perhaps. Night times are a blessing because I'm fed up with the day and feel safe when alone in my room and no one can ask a thing of me save the cat. I get a bit of an energy windfall if I've respected my body and laid down half way through the day once or twice. I love this energy and use it to keep up with housekeeping, bills etc. If I don't get it ~ well I can get irritable and exhausted at bedtime and oddly feel unwell and unable to sleep ~ thoughts racing and I hate when my house looks a heap just for not picking up that day......it snowballs blah, blah, blah eh? I was interested to read about the temperature regulation.....this is new to me to hear about. My history had been to not wear a winter coat ~ but perhpas a light jacket when 18 degrees below zero outside. Years ago when I drove a snowmobile I had to dress ultra light ~ it's a physical activity and when I'd arrive at my destination I would literally leap off the snowmobile and dive into the snow to cool down ~ I could not whip my jacket off fast enough ~ so amazingly hot! Where I now live though is a blessed 60 to 65 degrees almost year round....if anything my feet will get cold ~ it's near the ocean and kind of damp. Sounds like I should count my lucky stars I don't live in a temperatured climate that is more challenging. I again thank you all for sharing your experiences -- it's helpful and I truly appreciate it ~ :-)

After a couple of major surgeries is when my health took a major twist ~ After some time my issues were explained away by hypermobility syndrome or EDS-HM. But the one issue that cause the most angst -- to me anyway -- cannot be explained entirely by hypermobility syndrome and that is fatigue or exercise intolerance or what amounts to limited energy to do a days activities. So I'm curious how many dysautonomia patients have fatigue as a major undesired symptom? And was it the fatigue that brought you to seek out diagnosis or was it a combination of things? My new experience of chronic joint pain and chronic myofascial pain is not fibromyalgia nor chronic fatigue syndrome but is due to hypermobility syndrome ~ that much is understood thus far..... But for a year and a half now I can only be active on my feet doing things for about 4 hours. After that I feel compelled to lie down flat on my back. How this manifests ~ Well I couldn't keep up with productivity standards of a job I had so got let go - aka fired. They loved me but felt something was wrong (at that time docs were thinking MS). So more workups ensued with nothing found. So now I'm trying to work four hours a day for 3 days a week at a new job where the boss knows of my inability to stand longer than that.... I just BARELY make it.... I start to limp ~ I get stiff everywhere.....and simply have to drive home and lay down. Rarely will I sleep but occasionally I do. Most often it's just resting with eyes closed for a couple to four hours. When I get up I can resume my normal activity....till bedtime. So it's been a long time like this......I'll get heart palpitations, sweaty, sometimes flushed, occasionally vision will dim as if to faint. But most of the time it's just feeling weak like I better sit down before I fall down after 3 to 5 hours mostly around the four hour mark. Once while sweating my heart rate was 142 just from standing at the job. This top notch neuro doc thought it was a need for 'counseling' ~ Of course I don't agree. Just because my hand grip is relatively normal does not mean I don't feel weakness and find activity intolerable at times.... Since finding this website I see I have much in common with the widely varying blood pressures and a baseline tachy heart rhythm with some atrial tachycardia as well found on holter......so now I believe I have POTS type symptoms though not near as severe as many here. But trying to get housework done is a never ending battle as it takes me three times longer than it has my entire life........Nothing ever gets completely done because I am always a day or two behind! How many of you experience fatigue? What are your good hours of the day? Do you have good and bad days or are they always with fatigue? Have you been this way as long as you remember? I hope you can share ~ and also let me know of any coping strategies so I can live more peacefully within these limitations......or any ideas from healthcare providers on how to get more energy? I am not depressed or having issues where movement limitations are emotions driven ~ this is clearly physical. Thanks so much!

I'm new but happy to hear you got yourself to mass irregardless of your symptoms and mood ;-) It was Pentecost Sunday so I pray you got a boost to move ahead in life with peaceful reassurance and see everyday as the gift it is ~ I actually missed mass for close to a year and a half because of these health issues and two joint replacment surgeries ... But I made a comittment to begin going again at the first of the year.....& I must say it has helped me much. I started at a new Parish ~ the people at the old were always asking nosy questions about my health as I am now on disability ~ and for some reason that just sits wrong with people when you appear to them "well". So now I am anonymous at my new church and loving every minute of it! I notice if you fall to zero faith and despairing thoughts ~ it just doesn't or didn't in my case somehow "come back"..... It took me somehow "making" it come back......if that makes any sense. Meaning by my renewal of comittment ~ the more I gave up and gave in to the rote motions of going and saying the words etc. irregardless of how I felt inside ~ that alone was all that was needed to have me begin to see some light. I can dislike being there ~ feel angry inside, cry during mass ~ the whole ball of wax ~ but in the end? I went to mass and I felt little glimpses of interior healing ~ most of the time I feel nothing ~ but perhaps the most imperceptible bit of "relief" ~ that perhaps I am truly not dealing with all of this alone......

Hi Again ~ & sorry you had to deal with insensitive arrogant pride in the healthcare system.......it seems it goes along almost as a matter of course that the people that need the most TLC and understanding for the rarity of their symptom group ~ by puzzling the docs and stumping them surely get the rudest behaviour and attitudes..... Like an acute surgical abdomen that they can shoot their mouth off about to their colleagues is "exciting" where you are not important and a pain in their psyche or rear end (one in the same perhaps? lol)...... Truth be told an acute abdomen is a bore to everyone but the patient ~ where odd medical cases that actually cause you to use your brain and think outside of the auto-pilot of your basic differential diagnosis for common maladies......are actually the most exciting because everyone has an opportunity to learn and grow. Rarely is it seen this way :-( Okay so I went to my cardiologist today to say the metoprolol (beta blocker) has my heart rate btw. 94 and 100 ~ not much different than before but it's actually tolerable. So my avg. rate may be 10 beats less. I told him my blood pressure is higher -- and has a pattern of increased movement and activity with changing of position raising it yet higher. So the med asst. did a lying down - sitting - and standing set of orthostatic vital signs ~ As per my report they got 130/90 to 150/110 and finally standing 160/110 .... I told him my heart palpatations he called atrial tachycardia are much more frequent since starting the beta blocker a couple weeks ago... He just says that it's normal to have a lower b/p with standing not higher and he didn't get why this was. So I told him about hypermobility syndrome and dysautonomia ~ and he said well let's just double your metoprolol and we'll see you in 6 weeks. I told him I feel like crap while standing at work and have to or am compelled to lie down to recover and bring VS into a more normal range.......like in the middle of the night last night after a bout of a bounding tachy heart pattern my b/p was 95/66....surely from the recovery that the rest of the night time can bring. It kindfa feels like it's beating way too hard or forceful ~ I've had that quite often lately too. I told him of more strokes for this group of hypertensives than any other group and he still didn't get it. Finally he said ~ okay so your b/p is a little high today (???? how about all week rarely ever less than 150/110 with activity) --- who is taking care of your hypermobility syndrome? That was when I wanted to run screaming. NO ONE BUT ME evidently!!!!!!!!!!!!!!!! I have a pain doc, an internist, a neuro doc, a dermatologist, a rheumatologist, a geneticist, a few orthopedic surgeons, and all of them admit to being just about as clueless as can be about what I have either by saying so outright or typing things that are so out of date it's ridiculous. I see this local neuro once again on Wednesday and the last time I saw her she was puzzled and began to act like I was crazy or something.....Yet I didn't call her for an appt. ---- I sent the genetic report and she called me to come in. Maybe she'll know something about dysautonomia or who I can go to for a diagnosis, treatment plan (that works better than this beta blocker) and maybe a little hope. Or she'll ask me to see a shrink for a medical physical problem....in which case I'll politley decline and move on ~ But I have to be prepared mentally for her to dismiss me and my symptoms as well. I'm feeling a bit sad and a bit like indulging in a pity party ~ but truth be told things could be so much worse....... Yet I have lost my career, my livlihood, and most of what makes many lives enjoyable..... I asked about a tilt table test and the doctor said it wouldn't show anything because I don't have orthostatic HypO-tension (today) ~ just hypertension ~ And I told him -- I've documented I go to both extremes even in a day! He wishes someone other than him would take over my case that knows about these things ...... But till that time just take double the beta blocker.... Thanks for allowing my venting pageful of nonsense! I would like a diagnosis too because dealing with something as important as your heart deserves a name and some watchful care to my way of thinking.... Ah C'est la vie I suppose :-)

Thank you Reen ~ and thanks HopefulLady too for sharing a bit......... HopefulLady our symptoms sound very similar ~ I had mentioned POTS to my cardiologist on my first visit ~ but I probably should have waited ~ you cannot overwhelm these docs on a first meet visit ~ He was thankfully trying to wrap his head around an EDS-HM diagnosis. Then after the holter he said in follow up to try the beta blocker and that I have postural tachycardia or vaso-vagal symptoms likely from venous pooling that is common with hypermobility people. Now I need for him to take me seriously about this orthostatic change to increased b/p with standing/activity. Maybe the neruo doc will order the tilt test? I don't really know if they do those here or if I'd have to drive 3-4 hours to get to a place to have a tertiary care center/university center to do it. I'll try leaving the cardiologist another brief message & hope I can take the call. I do need to work today for a couple of hours. But yes again this a.m. my numbers were more in the normal range ~ but the orthostatic change is over 20 diastolic and systolic both ~ 110/71 and 77 to 131/97 and 91 merely standing up ~ I suspect this may be why all the fatigue after just 4 hours activity in a day. Reen ~ Truly it was the awkward late or delayed recovery that then had me pop up with new symptoms of pain ~ sort of body wide ~ not caused from surgery directly that had me seek out answers ~ after a year I got the HMS by a smart cookie of a rheumatologist ~ I think being on the walker for 8 mos. had my arms rebel because of the unknown laxity of tissues. Then it's just learning all I can and finally now piecing together the fatigue part of this through what sounds like autonomic nervous system issues -- well at least some of it maybe. I've like probably many of you have endured the rude doctors, the "counseling can help fatigue", it's all in your head.... etc. etc. Once I put all the pieces together ~ (hopefully getting further diagnosis about cardio-neuro things soon) I am going to delight in writing one of these doctors of the true diagnosis or diagnoses and suggest he think again before labeling someone upon first meeting (& only meeting) with a psychological issue when he can't come up with anything that matches his area of expertise. I should be over it ~ but to read his report still makes me go GRRRRRRRRRRR LOL! They made this particular doc the HEAD of a very important department at a huge famous university ~ I've been a nurse for 25 years and when I met the guy he reeked of arrogance ~ so I wasn't surprised by the report. But someone above him or around him needs to know that his response to not knowing the answer was not the wisest thing a doc has ever done ~ in fact it could really harm someone and delay true diagnosis for someone in need of some light and understanding. Yep that will be a fine letter indeed! Okay so I'm a bit cranky this morning :-) Off to work ~ thanks so much for writing me back......and sharing your experiences.

You can have Social Security do most if not all the work for you in getting enrolled for benefits. If you are truly housebound you can do a phone interview with Social Security ~ it is lengthy ... some over 3 hours long ~ but that's all you must do. Then they go and obtain all your medical records ~ even if they are into the hundreds of pages. You will be let known their decision by mail ~ sometimes in less than 4 months. In some cases if it's not quite a year that you've been disabled and unable to perform any work ~ they will still talk to you on the phone and if appropriate get the ball rolling for approval if they see that you will not likely be recovering before the year mark. I post this in case anyone might be helped by being helped by Social Security. Once you obtain your benefits ~ if you do improve in your health you can certainly go back to work ~ If you try your full time job or a regular substantial job you can keep your wage and SS benefit for 9 mos. ~ then you lose your benefit. However if you can only do a little bit of work ~ or what may amount to less than $1000 dollars per month ~ you may keep both your social security benefit and the wage for your "unsubstantial work". This info is on their website ~ but it can be hard to decipher when you don't feel well.

Hi everyone .... This is only my second post ~ I was dx'd with EDS-HM or Hypermobility Syndrome after a couple of back to back joint replacements. I never regained my strength ~ and this was a year and a half ago. I can get about 3-4 hours of relatively normal activity at a time ~ and then absolutely have to lie horizontal for at least 1 to 2 hours ~ more times than not 3 or 4 hours to be able to 'recharge' for a bit more light activity. After that I can resume a quiet evening at home. I recently took a job that is for 4 hours per shift ~ around 3 hours I have to tell my boss I need to sit down for a bit. A couple times I got dizzy. Went to my cardiologist because I saw my pulse for about a year now always tachy --- about 100. Blood pressure went from controlled on a lower dose of med ~ to uncontrolled and 4 times the dose of medication since this past January. It varies from low 80's/50's to high 150/115. All in a given day. My primary had me see the cardiology guy. My b/p would be either very high or relatively low when I'd get dizzy ~ say at physical therapy doing my routine. Just yesterday found that if I take my b/p lying still in bed upon awakening it is 100/60 --- but when I stand up for a minute or so it is 143/110. I have repeated this test 3 times now and if I rest lying down B/P gets normal ~ if I do light housework it's high again ~ just going from lying to standing it's high. So the only time it's reasonable is when I'm flat on my back ~ which correlates with how I feel ~ needing to chill and rest. One minute on my feet it's really elevated again. My cardiologist did an echo ~ normal. He did a holter that showed runs of atrial tachycardia and PAC's and PVC's were occasional and my avg. heart rate is 100. He put me on metoprolol a beta blocker ~ It has made the morning pulse in the 70's ~ but any activity has it in the mid to hi 90's ~ which is better than a hundred I suppose. So I have what looks like postural hypertension ~ by my best guess ~ And I'm now nervous because that makes you at risk for stroke and I don't want that.....I guess hypertensive people that have orthostatic htn ~ get strokes much more often. I'm early 50's in age. I wonder if anyone else here experiences a similar pattern of energy/lack of energy in a day ~ And if they too have a need to lay down to recuperate after activity. Also if anyone has checked their vitals or b/p and pulse to see if their's too is normal laying down but high when being active doing normal activities. Or normal in the morning waking ~ only to have it shoot up from merely standing...... I left a msg. for my cardiologist and the asst. called saying he'd call back but he hasn't or I missed the call somehow on my cell phone today and it's nearing the weekend. So I guess I'll try again tomorrow or on Monday ~ I think doc's don't really relish more unusual cases and I think after the last 2 years I'm definitely in that category! I see neurology on this Wednesday to give an update ~ I wonder if my poor recovery or exercise intolerance has been a cardiac/neuro POTS-type of thing all along --- I did read up to 3/4's of hypermobility syndrome people do have this... Does this sound familiar to anyone? Thanks!

To Nina ~~ Just posting my first note on the forums to you Nina ~ Better days - hours - and minutes are most assuredly ahead ~ Nothing stays the same ....... Problems find solutions ~ pain gives way to less pain ~ hearts mend --- Staying connected as you are the best you can in your own way shows your strength ~~~ It's sometimes when we are in our utter weakest end of rope kind of experience where we understand how blessedly strong we truly are & we go forward one step at a time ~ Blessing others even while feeling so bad ~ & truly your response to those here shows that love --- it's in you and it can and will heal........ take care I may have posted to the wrong person ~ but anyway healing to you Nina ;-)