My EDS & POTS Story

Hi, everyone! All my fellow EDSers, friends, family and those interested in learning more about EDS, welcome back. 🙂 Thank you for your patience, as it has been some time getting this blog up and running, as well as getting myself on a path where I am able to put time and effort into it.

It has been a long couple of years, and a long 2009 so far. My health has been poor, and I am sure you are all in the same boat, for the most part. It seems with EDS there is a constant battle of trying to cope with so many things simultaneously, that I don’t have a day where I am ever at 100%. Most days, for me, I am dealing with many random issues, and they all take a toll on me. From dislocations and subluxations, to IBS or gastrointestinal issues, to migraines, achy joints, shooting and stabbing pains, bursitis, TMJ, the chronic muscle spasms by my shoulder blades, the irritating pain that accompanies every step I take, the sore fingers, the constant fatigue, irritability, tachycardia, blood pressure dropping every time I move, lack of energy period, blah blah blah….we all know the symptoms. And, for me, they have consumed my life as of late. Especially the last couple of years.

First, I think it will be beneficial to give you a bit of background on me and my journey. My entire life I have dealt with the physical and emotional symptoms of EDS. Whether it was dislocating my knees during dance practice, staying home from school with chronic migraines, having low energy compared to my peers, feeling my heart race every time I took a shower – I had all of these strange symptoms and knew there was something ‘wrong’ with me from a very young age. My family didn’t think much of it, they just knew I was always sick with something, and I was teased for being a hypochondriac. My doctors told me a range of things could explain my symptoms, from growing pains, to stress, to psychological problems. Mostly, I was told there was nothing wrong with me. I knew that wasn’t the case.

With every year came new symptoms or progressive symptoms. Finally, in 2004, I decided enough was enough and I wasn’t going to take ‘no’ for an answer. I set out to find any doctor that would listen, and after a long list and a lot of office visits, I ended up in Dr. Ashu Mehta’s office in Anne Arundel Co., Maryland. He is a rheumatologist, so down-to-earth and calming, and was not only willing to look at my case with open eyes and open ears, but after just 5 minutes in his office, he was clearing his desk and breaking out books trying to get to the bottom of my problems and get me a diagnosis. He recognized immediately that there was something wrong, and his first instincts told him that I had either Marfan’s Syndrome or Ehlers-Danlos Syndrome. We broke out the medical books and he performed the beighton scale test on me to determine if I was a candidate for a hypermobility syndrome.

(see Beighton Score chart here: http://www.shoulderdoc.co.uk/article.asp?article=645)

I scored an 8 out of 9 on the chart, and possessed most of the major and minor criteria listed on the chart. This meant, for certain, that I was hypermobile. From there, Dr. Mehta sent me to the genetics clinic at Johns Hopkins University, one of the leading genetics clinics in the country, and one of the only places that focuses on such connective tissue disorders. This was 2005, and I was seen in the genetics department headed by Dr. Levy. During my time at JHU, I was seen by a team of doctors, residents and specialists. I was stripped down to my birthday suit and was poked, prodded, measured, scanned, EKG, echocardiogram, and brought into a room where my diagnosis was confirmed: Ehlers-Danlos Syndrome, Type 3/Hypermobility Type. All of the other types of EDS, the diagnosis is a bit more specific in that they have narrowed the testing down to a specific gene. They have not yet figured this out for type 3, and therefore, they diagnose off of clinical evaluations, family history, et al. With my diagnosis in hand, I set out to figure out the best course of action. Physical therapy, drugs, doctors and more doctors….The diagnosis was a long time coming, and finally gave me some answers, and also many more questions. This was just the beginning of the journey to where I am today.

In the next few years, I proceeded to follow my heart and attempt some very mild tries at holistic healing/alternative therapy. I also listened to my head, which landed me in specialists’ offices many days out of each month. I tried to mix the alternative therapies (which I was so ‘green’ to) and take the meds that the doctors were shoving down my throat as well. I did several years of physical therapy, which did not help all that much. I slowly got worse as the months turned to years. I went from being in pain only some of the time, to being in pain all of the time. I went from being a flight attendant, to not even being able to work a desk job because of the pain, joint issues, etc. There was even talk of injecting my knees with chicken cartilage, which to a vegan like me, was not an option. I went off of the medicines, which weren’t working, and went on new ones. I wore the braces, I tried the creams, I changed my diet a bit. Between the years of 2007 and 2009, at present, I have seen physical therapists, pain specialists, rheumatologists, orthopedic surgeons, general doctors, endocrinologists, cardiologists, psychiatrists, psychologists, counselors, and then some. I have spent so much money on doctors and medicines, and thankfully, for most of these two years I had decent medical insurance, which helped immensely. But, through all of this, the doctors still have not found a place where I am comfortable and my pain is under control, they haven’t found a way to help that is anything worth mentioning. The medicines just don’t help. My liver is probably terribly damaged from being 27 and having taken so many painkillers all these years. I haven’t found solace in my treatments as of yet.

In addition to the EDS, in 2008 I was diagnosed with POTS (postural orthostatic tachycardia syndrome). For years, I have had ‘problems’ with my heart. For what seemed to be no apparent reason, at random times, my heart would beat wildly fast, as though it were going to explode out of my chest. This would happen a lot when I was showering, doing physical activity, etc., but over the last couple of years it started happening even during my down time. I would be watching TV, reading a book, doing some super light gardening, and all of a sudden my heart would race like it was in a marathon. I am definitely not a marathon runner. While this may sound inconsequential, there was a lot that was happening because of it. First, I would become very dizzy. It would become hard to breath. And, it would wear me out for hours. An episode would last for a couple of minutes, but leave me tired and out of breath, feeling as though I just ran 10 miles, for the rest of the day. It was getting so bad, that I would pass out upon standing, my vision was blurry. As the years went on, this became worse and worse, to the point it was affecting my ability to work, stand for any length of time (concerts, amusement parks, even just the line at the grocery store), my ability to drive, etc.

The POTS has become more of a nuisance than the EDS itself. I have chronic pain from the EDS, but I can’t even stand up with the POTS. After pressing the doctors again to figure this problem out, I was put on a heart monitor for a month, 24/7. They agreed that I had severe tachycardia, but no arrhythmia. The cardiologists sent me to get a tilt-table test at Eastern Virginia Medical School’s heart hospital in Norfolk, VA. They are the only heart-only hospital in the country, and are connected with EVMS’ other facilities, which have been a big help to me over the last couple of years.

During the tilt table test, they did just that – put me on a table, strapped me to it, hooked me up to monitors and raised the table to an 80 degree angle, basically putting me in the position that any person would be in if they did something as simple as stand up. Then, they monitored me and took vitals every 5 minutes. It was obvious right away that my vitals were not where they were supposed to be. I became dizzy. My heart was tachycardic, racing like crazy. My blood pressure was dropping. Everything was getting blurry. I was feeling nauseous. And then, boom: BLACK. I passed out. They dropped the table back down, injected me with something to bring me to consciousness and told me the results: POSITIVE. Just from standing up, simply going from a laying position to a standing position, my blood pressure dropped to 50/30 and my heart rate went up to 173. Yikes!

In the end, I was told I have POTS. It is a side condition that some people with EDS develop. It is likely caused by the stretchiness of blood vessels, lacking the proper connective tissue structure they should have, therefore they are unable to squeeze and push blood throughout the body when I move. Normal people’s blood vessels are constantly compressing and decompressing in order to compensate one’s movements. Mine don’t function properly. Ugh! With this diagnosis, after several trials, my endocrinologist was able to find me some medicines that helped a bit. They didn’t make things perfect, but they brought me from a zero out of ten, to perhaps a four out of ten on the manageability scale. In addition to taking those, I have to be very careful to read my body’s signals, never stand for long periods (take my wheelchair to events where there is a lot of walking or standing), wear compression stockings all of the time (my granny stockings!), and take it easy.

For more on POTS, see my in-depth post on it by clicking here.

With the EDS and POTS taking up the physical side of things, the bipolar disorder and PTSD take up the emotional/mental side of things. I was misdiagnosed in 2007 with having severe depression, but was properly diagnosed later in 2007 with bipolar disorder, mixed episode type. Also, from years of physical, emotional and sexual abuse, I have PTSD (post traumatic stress disorder), and I have only actually been attempting to deal with it for the last two years. I have been on a whirlwind of medicines for the bipolar disorder, as well as to help with the PTSD. I am open about this on my blog for two reasons: I want more people to be aware of mental illnesses and help get rid of the stigmas that come with them, and I want to share my story in case it helps anyone else deal with any of these horrible illnesses. I don’t mind talking about them if they can help someone else in any way.

With all of this said, I am here, in mid-2009, at a turning point in my life. I lost my health insurance in the beginning of 2009. This was significant – not only did I lose the ability to see the doctors I need to, but I also lost the ability to pay for my prescriptions. I have been fighting a disability case since the beginning of 2008. I was denied twice, and now am in appeals with an attorney, hoping to get the judge to agree that with the combination of EDS, POTS, BPD, and PTSD, it is quite impossible for me to be able to work enough to make ends meet. The POTS alone should be reason enough, and my doctors have all documented and agree with this – though, the federal government and the state of Virginia have yet to agree. I will hopefully get in front on a judge in the fall of 2009. Until then, I am unable to work full time, and if I were to attempt to, I would disqualify my disability case. So, for now, I have no full-time income, no health insurance, and no ability to treat my illnesses conventionally.

Along with finding out all of the health problems I have over the last few years, I have also been on a great journey to find ‘me.’ I have become comfortable with myself, at 27, and accepted who I am. A bit left of center, a bit colorful, and a lot of kind-heart and passion. I want to meld who I am inside, with the way I look at my body and mind, the way I focus on my health care, etc. This seems to be the perfect opportunity to do so. I am in a place where I have no choice but to make some changes and really focus on making myself a better, more healthy life. I have had some ‘revelations,’ if you will, the last few weeks. I am taking control of my body and mind – all that they are and all that they aren’t. The doctors have yet to find ways that really help, and the meds are too expensive. The total cost, without health insurance, for the four major medicines I was on, not including vitamins, etc., is now over $2,000 a month. And most of them aren’t at the right levels or working enough to make a difference. The only one that was helping, for POTS, is $900 a month by itself. I have to deal simultaneously with the EDS, POTS and bipolar disorder. I am now taking back my body, getting control of it in a way I haven’t ever done. I have spent hours and hours researching alternative treatments, eastern medicines, supplements, diet changes…this list goes on….and, I decided I am going to take the plunge and just dive right on in.

I am writing about all of this to help those of you who are looking for a more natural way to treat your EDS. I will be writing about all of the things I try, and what results I am getting out of them. Perhaps, you too, will one day take a more holistic approach to your health, or maybe even just find a certain alternative medicine that helps ease the joint aches or the IBS. So, please join me on my journey to a better body, mind and spirit. If you have any questions, please just email me.

I will make a great attempt at keeping up with this, and making sure to note each new thing I try. For now, I am slowly going off of the medicines I am on, and dealing with the withdrawals from them. I will be doing this for another week or so, and then I am going to do a fast. I will write about all of this as it is going on – and you can follow if you are interested! After my fast, I will start my new ‘medicines’…lots of herbs, supplements, diet changes, etc. I will write about all of these as well, and go into detail about the info I find and the results I see, good and bad. (And, the disclaimer: I am not a doctor, and do not recommend you do anything I do unless you are under the supervised care of your physician. This goes for this post, and any other posts on my site.)

To each of you with EDS, may you have a pain-free weekend, or as pain-free as possible. Love and peace to everyone on this beautiful planet. And, thank you for being patient while I situated myself the last couple of months. Now that I am on my new journey, I hope you will join me.

You may also be interested in the following posts:

  1. My Symptoms
  2. Postural Orthostatic Tachycardia Syndrome (POTS)

10/27/2011
***Update***

Over two years have passed since this post was written, and it has been a long and arduous journey. I have continued to write posts, and as you have seen, have gone back to trying a variety of treatment options including the traditional western medicines that I had stopped taking for various reasons. I currently take prescription drugs, which seems to be the only way to keep the pain at bay and keep somewhat sane, while also filling my body with good foods and supplements to make sure I am not solely a toxic wasteland. I will continue to keep an updated list on the blog of what I take and different foods/therapies/supplements/drugs that I try. Thanks for following along and for all of your encouragement.

Lastly, I want to stress acceptance. I accept all of my fellow friends with invisible illnesses, regardless of what treatment routes you take. I do not judge you for taking drugs over holistic medicine, or for using diet instead of pain killers to treat your pain. Every person has to find what works for them. I would only hope all of you feel the same about me and my path, whether or not you agree with it. And, as an ever-changing and growing person, I am always open to suggestions or questions, so long as they are respectful. It’s such a beautiful thing when we can all work together to help each other find solutions.

With all my love,

xo
dani

Artwork by Rachael Brady

74 Comments

  1. Eveline

    Hi, I'm Eveline, I'm 18 years old and I live in Belgium. 2 months ago I was diagnosed with EDS and POTS. I recognize a lot of your story. School has just started again for me and I experienced a lot of problems. The biggest problem is that I can barely write because of my hypermobile fingers. Therefor I wondered if you're able to write with the silver ring splints you have. I think that would help me a little.Finally, I just want to say that your blog was a real big help for me.

    Like

  2. Bridgette Goeman O'loughlin

    Its amazing to read all the stories of people with POTS and EDS, I have experienced symptoms of both since I was roughly 12, I can sprain ankles with the slightest of movements some leaving me on crutches for months at a time. I have horrible fatigue and lethargy as well as insomnia. I thought my gut was normal but the more I think about it I do have all those issues…. I have issues with skin sensitivity and the pain of bruising when i just scratch my skin, my memory is TERRIBLE, I can barely concentrate and I am always dizzy. Ive been using Flurinef and Midodrine, the Flurinef gives very mild relief and the Midodrine leaves me with a tingling scalp and only works for 4 hours (if i take it at lunch I don't sleep)… I have had issues with depression all my life and looking back I realise half of it was just the despair of not being able to do the same things as every one else. I am 21 years old I can barely work 2 days a week and study 2 days at university I am so fatigued I can barely study and I am so tired of all the other different aches and pains that come and go daily, I am sick of feeling the pain and my friends think I am over exaggerating my problems for attention!! HELP PLEASE I WANT TO LIVE LIKE A NORMAL 21 YEAR OLD 😥

    Like

  3. Jaq Garrett

    Hi Dani,My name is Jacqueline. I've been disabled since 2004. I found out five years ago that I had Ehlers Danlos Syndrome. Six months ago I received a stem cell transplant (my own) in Jamaica. I'm making considerable progress, my POTS is dormant almost completely, and I am continuing to improve. I have TONS of friends all over the globe with EDS, but none close to me. I've wished for so long that I would someday find someone in my vicinity who struggles with the things I face. The weather changes and everything that effects us in Ohio specifically. Also, specialists and healers we use. I would love to keep in contact and share. I'd love to become an ally and advocate for you. I think this is something that will heal any sufferer of any illness, er or any sufferer of the world, especially those of us who heal ourselves for a living.I'm having a rough time rehabilitating my hips through physical therapy. I've been bed bound for three weeks now. I have to apply for permanent disability, get a wheelchair and get more assistance.I know you can understand what it's like to face these issues. I don't know anyone who understands. I'm so thankful for all my EDS support worldwide and internationally. I need some support here though. My family and friends have abandoned me over the past decade of my illness. Something most people who are disabled deal with. I want to also provide to you a friend who can understand without you needing to explain. Someone who can empathize.Sorry if I'm rambling. I have too much to say and too much pain clouding my mind.Anyway, I hope this finds you well.I'd love to hear from you.In health,Jacqueline Nicolefacebook.com/jacqueenbeeP.S. I see a GREAT Ehlers Danlos Specialist at The Cleveland Clinic. Her name is Dr. Heather Gornik.

    Like

  4. Jaq Garrett

    I want to state that I, too, have been forced to go the pharmaceutical route with my treatment after a decade of battling through with only alternative therapies. I think the healthiest option is whatever works best for you and you are the only one who knows that. I support your decisions! I respect you making the choice to do what's best for you. Thank you for your sharing and diligence to raise awareness and help. I appreciate you. Thanks,Jacqueline

    Like

  5. Brenda Latty

    Thank you so much for having the strength to step out here and tell your story.I am a 52 yr old female, living in California. I have Hypermobility Syndrome, Connective Tissue Disease and Degenerative Spine Disease.I needed a connection to someone like me. I understand your struggle with daily living. Pain can consume our lives so we fight to enjoy the simple pleasures every single day.God bless all who are dealing with similar problems.

    Like

  6. Dani B

    Have you ever tried the Tommie Copper sleeves or compression clothing? I'm just curious. My new doctor said I should wear one on every joint. I have the knee sleeves & I can notice some difference. I try to stay away from medications & cannot take most pain medications because I am allergic to so many of them. My doctor is starting me on cymbalta while we do more blood work, I am worried I will be allergic to it 😦 because I have allergies to similar medications.

    Like

  7. Anonymous

    I am wondering if anyone has tried to eliminate gluten and dairy from their diet? It can be difficult but I hear it can give some symptom relief…

    Like

  8. Anonymous

    I love your blog, along with many helpful links and resources. Very well done… wondering if you have heard of the Central NJ EDS Support group, at this link Central NJ EDS Support groupand EDSers United, web page at EDSers United – an organization dedicated to raising awareness for Ehlers-Danlos Syndrom, etc…I have EDS Joint Hypermobility type and POTS, possible that I have vascular type, but not tested yet. Not diagnosed until age 45 in 2013. I also saw Dr. Levy. I was glad for his expertise, and greatly disappointed that he was so focused on the potential emotional problems I possibly had due to EDS. This irked me because most of my life I had been probing my pysche, convinced in fact, that my issues were purely psychological…and never imagined a genetic reason…the only thing I was good at was emotional denial of my physical symptoms, which made it difficult to give a history of some of my symptoms. but I digress.Your blog is a great find…I will read more in the future. Keep up the good work!I relate to the invisible illnesses – multiple. Not only do I have EDS/POTS, but also the gastro issues that come with it…I found your blog by googling,\”lymphocytic gastritis\”. I have been diagnosed with narcolepsy, interstitial cystitis, vulvadynia, collagenouse colitis, collagenous sprue – I am gluten free, and more medical issues that I have to face. I'm employed FT in a career I love, which becames more challenging as the years go on, and have been resented because of my absences because I \”don't look sick.\” I sometimes feel tempted to wish someone might walk a mile in my shoes to understand…but it's not something I'd wish on anybody…

    Like

  9. colleen furman

    My story is too long to tell, I will keep this as short as I can. I have been hyper-mobile my whole life. No every talked about EDS. When I was 35 years old my life started to fall apart: tumor in my pituitary gland 2005, lipedema (displaced fat cells in my legs) 2007, swelling and pain in my thighs 2009, blood clots in both lungs 2009, hands locking up 2010, partial and complete dislocations of hips and shoulders 1998+++, two brain aneurysms 2013, 3 brain surgeries, TMJ 1998, jaw bone dislocate 2015 and so much more. I lost my health ins after the first brain surgery. Stress over money and if I would be able to work made me more sick. Depression started to kick in. The migraines take me down for the count. I have been in the fitness industry for the last 25 years. Being a personal trainer, I knew my body and knew something was very wrong. I had been diagnosed wrong for years; most doctors would say, “all the pain was in my head”. I am telling you the pain in my thighs, hands, head and the vomiting was not in my head…it was real.. I have a great Specialist. She helped define my EDS, but seeing her once a year is not enough. I am sick of the hospital and doctors that don’t understand EDS. I try to be strong and find the happy lining in everything. It is hard sometimes. I am back to work after a year of recover. I pray I can do this. I want people to know people with EDS are real people need a chance to live pain free. Thanks for your blog. It was nice to find people like me. Only my mom understands. My brothers just don’t understand. Thank to my new friends in this blog, I have people that get it….gets EDS….Have a happy and healthy day.

    Like

  10. Victoria Betchley

    I was reading not only your blog but also the comments. I am wondering if any of you know of any EDSers that have actually had a heart transplant besides Don Coover, who wrote a book \”I left my heart at Stanford,\” because I haven't been able to find any others besides him. If you do know of someone please email me whatever information that you have on them. redrocksyourworld@hotmail.com Just put the subject as EDS HEART. As far as I can tell I am only the second EDSers that has had a heart transplant. He is the only case that I could find or that my cardiology team could find. Thanks for your help and all of you keep your heads up and keep trucking through. We can handle this and all of us sharing our story and supporting each other makes us a family, a family of pretty amazing people, even if the general public or doctors don't understand, we know what we are going through and we are the best support for each other.Red

    Like

  11. Anonymous

    My story is everyones story. I am ecstatic I found you and everyone here. I can soooo relate. Everyone's story is so similar to everyone else's and mine too. I am saving this blog. I have been dealing with this illbess/ disease for almost to decades and NOW just NOW I git it! Its EDS hypermobile. I know because ALL of my diagnoses add up to this condition. Seeling GI surgeon Tuesday. Too many problems and ailments to say right now. But I have it. HELP!

    Like

  12. Anonymous

    I suspect that I have EDS type 3. Diagnosed with Degenerative disc disease (lumbar and cervical), spondylosis,crps,migraines, chronic fatigue,widespread musculoskeletal pain, joint laxity,hypermobility,sleep disturbances,IBS, depression, GERD,fibromyalia and heart palpitations. I have seen many doctors at the Cleveland Clinic and they still haven't connected the dots!Seeing EDS doc in November. Like all of you I find solace in knowing that I am not the only one.I simply could not deal with day to day living without God's help. I get through my bad days by being positive and knowing that there are people who are dealing with much more pain than I have.You guys are awesome because it takes an awesome person to stay positive through all of this! I wish the best for everyone here!

    Like

  13. mark m

    my daughter has a form of EDS and going to confirm which type next month. she had a little slip off an airline stairway ramp recently and almost completely ripped her shoulder joint out trying to catch herself on the railings. the best joint specialist doctor in the area found her connective tissue was so tissue paper thin that he almost couldn't re-attach it. her military service is now probably over. i was retired/disabled USPS in 2002 at 49 because of long episodes of very fast and severe irregular AF, neck,back,hip,and knee pain problems. i also get severely dry flaky scale only in winter skin problems. i have not been tested yet for EDS. i currently am fairly stable with no more severe AF and no meds. having good days and bad days but always having to get off my back a few times a day to ease the spine pains. i found that stress played a big role in my AF problems, and past emotional distresses. also having a great wife and daughter helps too.

    Like

  14. G.H

    This is a great share! I've found the more we can support each other and share the more we can raise awareness.I talk about lots of the different topics you mention here in my EDS-HT positive rehabilitation blog generationhypermobility.com in lots of detail because what I felt when I was diagnosed was that there was no one to help me cope with the huge mountain to climb. Breaking it up into steps and knowing someone else has been there can really give you confidence to start your own journey to a life with stable EDS-HT.I'm really keen on accepting EDS as part of a positive life and think being on control of your condition the way that feels best for you is a great way to go. I'd love you to check it out – http://www.generationhypermobility.com

    Like

  15. Anonymous

    Hope you are doing well. Finally came to the conclusion that I may have this condition. A lifetime of this with so much discomfort, pain, brain fog, anxiety, BP issues, etc… Will be getting tested for EDS in the coming weeks. Have a CT scan scheduled prior (for something I originally though unrelated until I found this). Thank you so much for posting/sharing your story and also for everyone posting their experiences here. I’m speechless and feel like I’ve entered a world, that for so long, felt so alone in. I think the stats are that 1 out of 5,000 have this condition worldwide (making it a rare condition). Not sure how I survived this long. Sharing some other conditions (in case it relates for others). Seeing an infectious disease specialist for recurring kidney infections (which CT scans show mass scarring). Also scarring in my ears from repetitive ear infections as a child. Consequently, always very hyper-flexible as a kid/adult. Also recently diagnosed with severe OSA which they’re studying to see if sleep apnea is a secondary result from EDS. Imagine stopping to breathe 82X’s per hour for how many years? Plus full symptoms of EDS with a very demanding 24X7 job. A walking zombie I have been for years. We’re ALL fighters here!!! I’m in awe of everyone and wishing us all the best in life. Please keep sharing as it helps the few of us out there.

    Like

  16. Lee Sellers

    I guess a ‘Hello’ would suffice as an opening line, so… Hello! =P My name is Lee, and I live in the North of Ireland, or Northern Ireland, whichever is preferred.My life, for which I am still glad, is, like many of you, most definitely not a bed of roses. I have been diagnosed with the following: – Paroxysmal Orthostatic Tachycardia Syndrome (POTS);- Ehlers-Danlos Syndrome – Type: Hypermobility (EDS-HM);- Neurocardiogenic Syncope Syndrome (NCS);- Chronic Depression.Symptoms began to manifest in 2005, though, for me, surviving meningococcal septicaemia in 2008/9 kick-started the year-by-year and, now, stage-by-stage, rapid decline of my health. I’m only twenty-four and, at times when things get too much for me, I often wonder what I did to deserve all of this! I try to push myself too much, to do the things my family and friends can do and I’ve now got to the stage where I can’t push anymore. At this stage, where I am physically and mentally exhausted, I guess you could say that I am glad to have found this blog. Nothing really works to relieve my pain, and as of this I would love to hear from anyone who has found a way of coping. I don't need to imagine the pain all of you experience, because I share that pain. I think we're strong people, because it's said that we're only given enough to handle. =) – I look forward to any and all responses. Thanks for the opportunity to post, Lee.

    Like

  17. LYDIA HICKEY

    Hi ya-all. Anote on the bi-polar. I was reading a post by a phisiolgyst who treats EDS patients. Guess what. He was saying the Bipolar aspect is actually caused by adreanal dumps. Think about it- stress of living in a messed up imperfect world + your bodies attempt to constantly heal those loose joints + trying to funtion as normal peoplekeep up with daily demands/ over doing it) = my body is tired, my body is healing, my anxiety caused by exposing myself to societies busy schedual and my adreanal glans are over worked.Please look this up, don't take my word for it.He also said he say a trend of traits: high functioning autistic, highly focused(adhd), creative, sucessful, and mood.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s