Sunday, October 14, 2012

My thoughts about my life now.

So many of my friends and family have been so loving and supportive during this past year as I am learning to deal with life these days and I am so thankful for that. I am thankful for all the prayers as well. Often I am asked what I need or what would be helpful and a lot of times I am at stuck not really knowing what to say. I found this letter type format that helps express what it is that I need and I hope that it will be helpful to answer those questions. I have shared this also on my blog but if you are interested in reading the letter I have posted it here. If you know someone, or you are dealing with chronic pain then maybe this post will help you explain to others what may be helpful for you. Feel free to copy it if you need to to make it your own.

I am sharing this with my friends and family because I am often depressed because of this genetic disorder that keeps me from having life as I once knew it. I try every day to be happy about something and there are times when I just can’t seem to get there. I am hoping that these thoughts, parts of which I borrowed from someone who has this same disorder, will help explain what my life is like now. So that if you find me complaining or being depressed or sad or you have noticed that mood has changed this past year don’t worry, I am just working things out.

To be honest I have been and still am struggling with what the rest of my life is going to look like. I have resolved many questions that I had about this but many more surface all the time and it is because of the genetic disorder that I have. I often feel alone in my illness and I was doing some math the other day…. That is scary…. But the type of illness I have is a genetic disorder, Ehlers Danlos Syndrome, that is very rare. The type that I have affects about 1 in 20,000 to 50,000. The Dallas Cowboys Stadium seats 80,000. That means that on any given Sunday when the Cowboys are playing at home there would be only 1-4 people at the game who has the same type of genetic disorder that I have. It kinda puts it into perspective as to how much is not known about this disorder. It is also important to know that I have many other disorders because I have Ehlers Danlos Syndrome so it is not just one disorder that I have to deal with. I have Postural Orthostatic Tachycardia, Rheumatoid Arthritis, Lupus, Fibromyalgia, and several other disorders. Most of the time my doctors don’t know what to do with me because they have no other patients who have EDS so it is very hard to get the treatment that will help me deal with my symptoms. There is no cure for EDS and treatment is trial and era most of the time. I am very very thankful for the things that we do find that helps.

Having Ehlers Danlos Syndrome means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.

Most people don’t understand much about this disability/disease and its effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand…

These are the things that I would like you to understand about me …

 I am scared. I don’t know what the future holds for me. Will I end up in a wheelchair or will I be one of the lucky ones?

 If you find me being quiet and reflective, please don’t think I am upset with you. I am trying to sort out my fears.

 I am angry. EDS has taken so much away from me. I can no longer do many of things I enjoy doing.

 I sometimes have difficulty just completing simple tasks.
 If I appear angry please understand it is EDS I am angry with, not you.

Please understand…

that having EDS doesn’t mean I’m not still a human being.
I have to spend most of my day being very careful about what I do, and if you visit I might not seem like much fun to be with because I’m still me stuck inside this body which seems like has betrayed me.

I still worry about school, will I get to finish my Master’s, work, will I ever be able to work again, and my family, will I be able to help them when they need me, and friends etc., and most of the time I’d still like to hear you talk about you.

I appreciate your input but having EDS is hard to understand so your suggestion about what I could or should do may be helpful but please don’t be offended if I say that I have tried that before or I answer with why that would not be helpful.

EDS has affected everything in my body and I may not be able to do many things with my friends but I still want to be part of the “gang.” Please continue to invite me to participate in activities.

You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can’t skate with everyone else but I can bring the hot chocolate and watch.

 Please don’t tell me you know how I feel.
You don’t.
Don’t offer me sympathy; I don’t want your pity. But do offer me support and understanding, which I appreciate.

I know sometimes I look perfectly healthy, but looks can be deceiving.

 Please understand…

 that I am dealing with invisible pain and a lot of fatigue. Even on a good day, I feel like others do when they have the flu (tired, achy and sore), that is my baseline and it often goes down from there. Please keep that in mind.

 Please understand the difference between “happy” and “healthy”.

When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years.  EDS is genetic, this means I have had it since birth, even if I was only diagnosed recently, I have been suffering from this since I was born and I am just now learning how to pace myself to help me conserve energy. All these years I have pushed myself way beyond what was healthy for me which I believe has caused my rapid decline in this past year.

I can’t be miserable all the time, in fact, I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever.
Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy.

Please know that because I now know what is wrong with me I am very interested in researching the ins and outs of this disorder and what it does to me and what may help and what will harm. I would hope that you would remember that I don’t have very much going on in my life other than going to the doctor since I am unable to get out and do other things and also because I don’t have a husband or family, there is not much news for me to share about life. Hearing from my friends and family is a joy to help occupy my mind.

Many people have the same type of joint pain and feel bads that I have but if you want to suggest a cure for me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another.
At first, I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better.

There is NO cure for EDS (and until they find the exact genes causing it and technology and medicine get to a point where something can be done about this, there will be no cure), only some of my symptoms and pain can be treated.
If there was something that helped, then I and other suffers would know about it (this is part of the reason I am a member of the online communities I am a member of).

I want you to know that the pain and instability etc from EDS moves around in my body all the time, sometimes from moment to moment.

If you want me to do something, ask if I can and I’ll tell you. Just because I was able to do something yesterday (or an hour ago) doesn’t mean I can do it today (or in another hour).
Yesterday (or earlier) my shoulder was throbbing; today (now) it is my knee, who knows what it will be tomorrow (or later).
Also, understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing those five minutes has exhausted my resources for the entire day and I’ll need to recover.
Imagine an athlete after a race.
They couldn’t repeat that feat right away either.
Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to EVERYTHING that I do.

Similarly, EDS and the symptoms of it may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand…

that “getting out and doing things” does not make me feel better, and can often make me worse. I often tell myself that fresh air never hurt anyone but then I remember that just getting dressed to go outside to get that fresh air is just not possible for me most days. Telling me that I need exercise is not correct and probably not appreciated – if I could possibly do it then, I would.

EDS causes a secondary/reactive depression.  Wouldn’t you get depressed occasionally if you had a body that could change suddenly for no reason, caused you pain 24/7 and could spontaneously rearrange itself, meaning your joints dislocate,  through no fault of your own?

Please understand…

If I say I have to sit down/lie down/take these pills now, that I do have to do it right now! It can’t be put off or forgotten just because I’m doing something else more exciting.
EDS does not forgive its victims easily.

Please understand…

That I can’t spend all of my energy trying to get well from EDS, it is incurable (and genetic, so unless I can change my gene’s I cannot change my disease/disorder).
With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well.
But an important part of having a chronic illness or disability like EDS is coming to the realization that you have to spend energy on having a life while you’re sick/disabled.
This doesn’t mean I’m not trying to get better.
It doesn’t mean I’ve given up.
It’s just how life is when you’re dealing with EDS or any chronic illness/disability.

As you can see EDS really is life-altering and not fun at all…

Finally, please remember that I am the same person I was before I was diagnosed with this even though I have always had symptoms of it; EDS doesn’t change the heart and soul. 
I still laugh, I still cry. I still love and I still hate.
I am me, I am not my disease.

Please continue to love me just as you did before. I need lots of love, understanding, support, and hugs, just like anyone else.
But most importantly I need you in my life.

Saturday, August 4, 2012

What Not To Say and What To Say!

I have lots of friends and I love them all very dearly and I am so thankful for them being in my life. Since finding out that I have Ehlers Danlos I have however found that the good intentions of friends can hurt and belittle me and I have also found that the misunderstanding of what chronic illness is and feels like has actually cost me some friendships as the "good intentions" of some of those friends is not what I want or need and because that is misunderstood new boundaries have had to be set in my life. This to me is very sad and hurts my heart very badly but I am all that I have to keep me safe so it has become what it has become.  This might not make much sense to some of you but those with a chronic illness may just understand.

Anyone who has a chronic illness, or two or three or more at the same time, can relate to this and those people who have never had a chronic illness, or those who have people in their lives who have a chronic illness need to READ THIS and take it to heart. The second link gives ideas of kinds of ways to express your concern and love for those you know that deal with chronic illnesses.                                                                       

Monday, July 23, 2012

My Great Great Grandmother who had Vascular Ehlers-Danlos Syndrome

 This is my Great Great Grandmother. It is her bloodline that Ehlers-Danlos came from. I have not been able to trace it further than her at this point. It was said of her that she had may problems of what they said back then was blood problems or blood disease. I also believe that she had Mast Cell Disease as well from hearing reports about how she would get red spots all over her legs. She often had to go to the doctor because of her blood issues. She has, according to my Genetic Doctor, the features of Vascular EDS with a long thin face and a long thin nose. The other pictures are of me. I believe that I look much the same as her with the same features. I am very overweight but my face still shows the same features. I can see my veins under my skin, not bulky like older people's veins, but my skin is translucent. I am just wondering if I too have a crossover of the Vascular type of EDS. 

Me age 16

Me about age 41

 Me about age 41

Friday, June 22, 2012


Today, June 22, one year ago I lost a very dear friend to a blood infection and this started a downward spiral of heartache for me.  I attended my friend’s funeral on the following Tuesday, and then on July 6th my very best friend died and then on July 13th I found out about another really good friend that had passed and then on July 20th I found out about another really good friend that had passed and then on July 28th I learned that my cousin had passed.  That was sooooo overwhelming and the grieving was out of control.  That was 5 people in 5 weeks.  Then just about 4 weeks later I learned that I have a genetic disorder that explains all of my aches and pains and the disabilities that have kept me from being able to live my life like I always thought that I would. I had never heard of that disease, Ehlers Danlos Syndrome, but once I learned all about it, I am still learning, I began grieving for my lost life as well because I knew that I was not going to get any better than I am now and most likely I will decline even more.

My Sweet Sweet Best Friend Cindy! 

 I am a missionary and my dream since the age of 3 was to go to the mission field and I felt God calling me to do that when I was 9 at which time I committed my life to serve God as a missionary.  Seven years ago I moved to Nigeria and although my body hurt and it was very physically challenging and really really hot, I was living my dream.  I am back in the States now and I am very very sad that I will not be able to return to Nigeria.  I know for sure that if I can't even go to the grocery store for 20 minutes without nearly dying then there is no way I could make it in Nigeria. I know there are other missions that I could do but I am tired of hearing that, I would love to hear from someone who says, "I am sorry that you aren't going to be able to do what you believe you were created to do, that must feel sad and scary and be a hard thing to face....." I know that folks just want to encourage me, but not a single friend has said that to me, they only tell me how much I can do missions here but they don't understand that I can't even stand more than 5 minutes to wash dishes because I am in so much pain and I am so dizzy all the time. I don't know how they think I am going to "save the world" like that? 

I was told the other day that I had just given up on life once I learned the name of a disease that I have.  I was also told that I had lived with this my whole life so why does it have to be different now just because I know what it is called.  Well, that is right, I have had this my whole life and now that I know what it is it helps me take some pressure off of myself because I have always been very hard on myself about why I was not better at this or that, or why I didn’t have the same energy level as everyone else, and If I would have done this or that better than I would not be hurting all the time.  Guess what? None of that is true, it is not my fault that I hurt all the time or that I don’t have enough energy to sit up all day without having to lay down. The lesson that I have learned this past year is that if I would have listened to my body way back when, when I was hurting and tired and what not, then I could have paced myself and maybe I would not be so disabled now, and maybe not, but the fact that I know what it is called that is wrong with me does not mean that I have taken that as an excuse to stop living.  

Those who know me know that I am a people person to the max.  I love being around people, I thrive being around people and because I can no longer do that like and when I could before, is very hard on me.  I have lost so many things…… Also, those who know me know that it is a huge great deal that I am taking time to rest when I need to and to ask for help when I need to and to not push through the pain realizing I am damaging my body and my future.  I am not the best with self-care for lots of reasons, but now I am forced to take care of myself and even that is a reality check that I am not comfortable with.

All in all this past year has been lots of up and downs and discoveries both positive and not so much and there have been many many days that I would have traded places with any one of the 5 people I lost as I know they all were believers in Jesus and are all in heaven.  I have been extremely suicidal this past year and even now I am not real excited about being alive all the time.  When you have a chronic illness, that is bad enough, but when you have a chronic illness that no one can see that is even harder.  If I were bald from treatment and dragging around an IV pole then I would get phone calls of prayer support and people would bring me potluck suppers. But that has not happened other than just a few very dear friends praying for me…. Which I am soooooo thankful for.

I wanted to share this today because I am feeling very sad at the loss of my friends and I am also very scared because I don’t want to go through another season of such great loss. I know that we never know when we will get news like that but I am not finished grieving my friends or my life and to think of any more of that scares me.

The only hope I have is in Christ and my faith in Him and that I know that no matter what, I will spend eternity with Him and my friends and family!

Thursday, June 21, 2012

As Blogging Goes With Good Intentions When You Don't Feel Good......

My whole intent of starting this blog was to help educate myself, my family and my friends and maybe even some healthcare professionals about Ehlers Danlos syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS) and several other things that I deal with as a result of Ehlers Danlos. If you don't already know, EDS causes lots and lots of pain 24/7. You can never escape the pain and many times I have major brain fog and I just can't think well and words seem to be missing from inside my head. EDS is something that is life altering because of the pain, for starters, but frankly I am used to a certain level of pain and daily that pain level goes up with dislocations and subluxating of my joints, but POTS is what I believe is causing my life to be basically unlivable in any way that I have lived life in the past. Below is a video explaining what POTS is and what it does to your body. 

Well, I don't know where good intentions really get you but anyway, I haven't really felt well enough to write lately. So, even though I don't feel great today, I sure feel better than I have in a long time and that is because I have been getting IV saline fluids twice a week now for a few weeks to help with the dehydration that POTS causes.

Most people's bodies are made up of about 70% water but people with POTS are usually anywhere from 30-35% dehydrated in their bodies. In this case, you can never drink enough water to make up for that difference so sometimes, especially if you live in a hot place like I do in Texas, you need some extra help with hydration. I go to a local hospital to their infusion room, where people get chemo treatments, blood transfusion and all other kinds of meds, to get my fluids. I get two bags twice a week and because my veins are small and not so sturdy, it takes a long time to get the fluids in. Usually, it takes about 4.5 hours to get the whole two bags in. That seems like a long time but I must confess that the infusion thing is not a bad gig.... I get to sit in a really comfy recliner with a warm blanket and each chair has its own personal TV. So I just push back, get warm and watch TV or read or listen to my IPod or my favorite thing, I sleep! The only part that I don't really like is getting stuck for the IV.

The pain of the stick is usually brief at first unless there is digging involved, but I think the stick activates my nerve endings or something so I kinda get achy for the rest of the day, that would be achy on top of my normal achy. It usually takes about three sticks but on occasion, I get by with just one stick. The other day on a Friday I had infusion done and that was 3 sticks and the next morning I had to get a blood test done and that was 5 sticks with no blood, in the end, so they told me to come back on the following Monday and that was 5 more sticks and yes..... blood... but they took 16 vials...wheeeewww... I didn't think I was going to have any blood left.... and then the next day was infusion again and that was 3 more sticks because the blood test stickers had used and messed up all the veins for sticking I had in my

Anyway, that was 20 sticks in four days! All I have to say is Thank Goodness I don't have to get blood tests done that often!!! A funny thing that also happened on that Monday was that I went to the eye doctor and of course they dilated my eyes without telling me beforehand that they were going to do that so I didn't take anyone along to help drive me home. I had only had this done one other time and it was the worst experience I have ever had with my eyes, ever... it was a year ago and of course, I was not told this would happen, and I can remember not being able to see even to the front end of my car. It was only by God's Mercy that I made it home without running over 6 people. Anyway, I was really concerned about this because I was worried that I would be driving like a drunk person and if I were to have gotten pulled over and the police officer would have seen my arms with all the sticks, which look like drug tracks, then I knew that I would not be able to convince them that I was not high on drugs but rather I had just been to the eye doctor. I call a friend who I thought had the most money to get me out of jail and told her just in case......Again, God was smiling on me that day because not only did I not get pulled over, but the dilation was not nearly as bad as the first experience. I was able to tell the doctor that last time was awful and he used a milder form of drops this time. What I learned? Just speak up and let the doctor know when things aren't going well for you and most times they can help you out and confirm dilation!

Onward I go.....I wanted to post a link to a video on YouTube that I found that explains what living with EDS is like. There are lots of videos like this and I am glad that people have posted their stories because it helps me understand myself better and it helps in explaining to others that one, I am not alone nor am I making this up, and two, it gives others an idea about what my life is like.

This is The Spoon Theory! This is a great way to explain way living with a chronic illness is like. 

Here is the link to the video on EDS


And here is a link to explain a little bit of what POTS is and how it can affect the body.

Come Back again to learn more about EDS and POTS and the rest of the problems that EDS offers.

Thursday, April 26, 2012

This is what is wrong with my Genes.....

My name is Amy and I was diagnosed with Ehlers-Danlos Syndrome at the age of 44 in Sept 2011. I posted this blog post in 2012 and it is now 2023 so I am updating the information here because this have changed in the world of understanding EDS and also in my diagnosis. When you have Ehlers Danlos Syndrome it takes a long time to find out all of the damage and disorders and syndromes and autoimmune problems that you have that would have been missed for most people. It is not uncommon to be diagnosed with many different types of illnesses or disorder and such. It's embarrassing but there is nothing the EDS can do about the things they are diagnosed with, meaning there is usually no cure and sometimes no treatment, and there is nothing the EDS patient did to cause these issues. The condition of the EDS patient is a result of the EDS and cannot be blamed on the patient nor can they just magically feel better. EDS cannot be compared to anything that your aunt or neighbor or mother or cousin has, unless they have EDS and even then it effects all people in different ways. There are somethings that are a given if you have EDS that you will struggle with but not everyone with EDS with struggle with them in the same way.

Please be kind and understanding and most of all keep your opinions to yourself of what you think will help the EDS patient. What we need the most is knowing that we are accepted for just being us and that you are not judging us on our ability to function on any level from previous days. The ability to function changes from day to day and lots of time from hour to hour in any given day.

I hope that you will be able to learn about EDS and what it is and how you get it and what can be done about it. I am going to share my story in a very personal way here in this blog but also I am providing educational information about EDS as well. There is more involved in living with EDS that even EDS patients can imagine and because it is different for everyone things that I share will not relate to everyone with EDS but there will be things that being chronically ill will have in common and I hope those things will bring teaching, comfort, understanding and encouragment to keep pushing forward and never giving up. 

This information is provided so that one can understand the debilitating effects that Ehlers-Danlos Syndrome has on my body. Ehlers-Danlos Syndrome is a rare genetic disease with 8 different types of the syndrome. I have what is called Classical type I which affects 1 in 20-50,000 people. The list of my what I have been diagnosed with throught my life is included later in this post. They say that the good news about EDS is that it won’t kill you, and the bad news is that EDS won’t kill you. I have lots of issues with my heart that are alarming and of course dangerus.  As a child with EDS, the patient experiences chronic pain which is brushed off as growing pains and the over flexibility, which causes many many injuries and is referred to as one being double jointed.  The patient, from early childhood, feels different than those around them and is often depressed because they usually cannot participate in activities that those around them are doing which leaves them being labeled as lazy so, many of them push themselves to participate with the result being a silence of pain and suffering. As a child, I was active in different activities although I did them with pain.

Since EDS is a genetic disorder often more than one family member is affected.  In my case, I am adopted and no one in my adopted family has EDS so I was never able to relate my pain and problems with anyone else in my family.  My dad’s favorite line is, “Oh there is always something wrong with you.” Well, he is right, but I can’t help it, it is just the way my body is. I recently got in touch with my half-sister, she and I share a birth father.  My sister has EDS as well as two of her children.  

Below is a list of my illnesses that I have been diagnosed with, that I can think of, and the symptoms that I deal with. These things are very common with people with EDS. EDS is different in each person and because there are so many symptoms that match other illnesses EDS is often left undiagnosed until patients are in their 30’s or 40’s. 

Because our bodies are made up of 80% collagen that means that every part of the entire body is affected and since patients with EDS have faulty collagen or not enough collagen everything that involves collagen is compromised.  It is a genetic disease that affects 8 some doctors say 15 of the 24 chromosomes that humans are made up of.  There is no cure for EDS and there are no medicines for it other than an attempt at lessening the chronic pain. Patients with EDS have chronic pain 24/7.  Having all of these conditions without knowing that it is all caused by Ehlers-Danlos Syndrome leaves the patient feeling like they are crazy for having all of these things and the fact the many many doctors don’t know about or much about EDS causes them to discredit the patient and tell the patient that these things are all in their heads. EDS patients make many trips to the doctor and many trips to the ER as well where the patient is misunderstood or often seen as a drug seeker. In the past I have gone to the ER at least 2-3 times a month for many different reasons  and at one time I had 19 doctors that I saw on a regular basis. Just keeping up with doctor appointments is a job in itself.  

Parent’s, teacher’s doctors, counselor’s, and friends often judge the patient stating that they are lazy and hypochondriacs.  To many, it does not seem humanly impossible for one person to have some many illnesses and symptoms and still be alive or not a liar.  Patient’s with EDS face a future of deterioration in their bodies which grows more and more as the patient ages and since there is no cure for EDS and the only treatment is to try and control the pain there is not much else that can be done. As you can see from what is listed below there is not enough medicine to take care of all of these symptoms and if there were, taking all of that medicine would kill a person.

Each day I am dizzy, have a headache, body pain throughout, several joint dislocations or subluxations, muscle cramps and burning muscles, confusion, irritability, chronic fatigue, insomnia and most of all discouragement just to name a few.  Depression is a given with EDS as the patient watches life slip away from them as EDS not only affects the entire body but everything that one does in life. Daily I have to think about each thing that I do because of all the pain and other symptoms I have my endurance is greatly limited in a day. For example, If I am going to go grocery shopping then I know that I can't also wash dishes on the same day as I rarely have enough energy to do both in one day.  It is not just the pain that stops me but the chronic fatigue from the energy that the body burns when it is in pain. My life has been very hard dealing with pain and illness and being left out of life.  I have developed a very high pain tolerance having EDS so when I say that I am hurting it is more than the usual daily pain.  

I hope that you can tell that I am more than overwhelmed with having EDS and the outlook of my future as my parents are in their mid 70’s with health issues of their own.  Also, I have no husband and no children who can help take care of me now or in the future.  I feel very alone with this disease because people just cannot understand all that I deal with and when I do share instead of just listening and supporting me, they all give advice on how to treat this or that or they preach to me about healing and how my faith is lacking because I have not been healed. I am sure that I am guilty of some of the same things in offering help to others, and please forgive me if I have ever done that to you. I am terrified, frustrated, angry, grieving what I always thought my life would be like and I am very ill.  Because I didn’t know that I had EDS I always thought that I had done something wrong to cause all my pain so I have been very hard on myself and for a long time. I have been holding on to the hope, actually for me it was a fact that one day I would get better so that I will be able to go back to the mission field.  Now that I know that EDS will take away my ability to function on my own, my vision and hope and the assurance of knowing what I believed God created me to do are lost to me right now.  I need help right now just to stay alive and I see that living the rest of my life without the ability to do what I feel I was created to do seems pointless and a waste of time.  I know that my thinking can change and I need encouragement to help me make it through this time.  

In all, I have had
Surgeries: 23 that are related to EDS both minor and major

Conditions I have been diagnosed with throughout my life, that I can think of: (at birth I had very low APGAR scores, and I had a hard time learning to walk, which can be markers of EDS) There are 47 + conditions that have been diagnosed with and I have 44 of these illnesses currently that I can think of.

Ehlers-Danlos Syndrome Classical type Beighton scale I scored 9-9  

Genetic Disorders and conditions as a result of them:

  • Elhers-Danlos Syndrome Classical type Beighton scale I scored 9-9 (wondering if I have some vascular cross over)  
  • Osteogenesis Imperfecta Type 1 
  • Hemochromatosis type 2. 1 heterozygous for H63D 
  • Mast Cell Activation disorder/syndrome 
  • Postural Orthostatic Tachycardia syndrome (POTS)  
  • Dysautonomia
  • Kidney reflux corrected when I was three (damaged kidney – not sure which
  • one) 
  • Chronic Kidney Infections 
  • Central vestibulopathy due to abnormal tracking, saccades, OPK, positional and
  • Hallpike right with possibilities of lesions to include dorsal vermis of the cerebellum and
  • intrinsic brainstem lesion 
  • Peripheral vestibulopathy due to right acute labyrinthine or vestibular nerve injury
  • >2 weeks of age and left caloric weakness with possible etiologies to include vestibular neuronitis, labyrinthitis, otitis media, Meniere’s disease, or cerebellopontine angle pathology 
  • Depression
  • Dissociative Identity Disorder (mainly from medical issues in very early childhood)
  • Eating disorder – for 40 yrs. overeating/ 13 yrs starving, purging, Bulimia  
  • Insomnia  
  • Obsessive-compulsive disorder (OCD)  
  • Dyslexia 
  • Tinnitus
  • Anemia 
  • vitamin B & D & C & K deficiency 
  • Iron deficiency  
  • Heart Conditions:
  • Artrial Fibrillation 
  • PFO grade IV 
  • Atrial septal defect (ASD)  
  • Atrial septal aneurysm (ASA) 
  • Tricuspid Regurgitation 
  • Mitral Regurgitation 
  • Platypnea-orthodeoxia   
  • Ventricular tachycardia, probably related with a scar in the left ventricle  
  • Premature atrial contractions (PAC) 
  • Supraventricular Tachycardia (SVT) 
  • Normal left ventricular systolic function with mild diastolic dysfunction 
  • Autoimmune Disorders:
  • Lupus 
  • Epstein Barr/Chronic fatigue 
  • I have Mono virus that flares up  
  • Lyme disease (In Ehlers Danlos sometimes people test positive with Lyme
  • because the same items show up as high in blood work. When I tested positive I had just been bitten by a tick and was treated right away with antibiotics)  
  • Hormonal Disorders:
  • PCOS Poly Cystic Ovary Syndrome 
  • Obesity 
  • Metabolic Syndrome  
  • Hypothyroidism
  • Hyperthyroidism
  • Parathyroid blood counts get extremely high at times
  • Insulin Resistance 
  • Enlarged Thyroid with a cyst  
  • Cyst on Adrenal gland 
  • Lung:
  • Asthma 
  • Pleurisy (4-5 x’s)
  • Bronchitis (get this often)
  • Atelectasis on several occasions
  • Allergies are grass, tree nuts, dust  
  • Muscle/Skeletal:
  • RA 
  • Intracranial hypertension 
  • Ankylosing spondylitis (AS) – possible- L5 and L6 (not sure which ones) have fused on their own   
  • Fibromyalgia
  • Degenerate Disk Disease -T1 and T2 within the C7 vertebral body there is a hemangioma, C2-3,
  • C3-4, C4-5, C5-6, C6-7. C7-T1 Mild disc desiccation,
  • Scoliosis – mild. 
  • Costochondritis
  • Extra bones in feet 
  • Flat feet 
  • Gangling cysts
  • Atelectasis Atelectasis
  • Gastro:
  • Gallbladder disease - Gallbladder out 1993 
  • Diverticulitis
  • GERD (Gastroesophageal reflux disease) 
  • Irritable bowel syndrome
  • Gastritis 
  • Stomach ulcers  
  • Small lesions on esophagus 
  • Hiatal hernia  

Symptoms: I experience almost all of these within a day or several times a week,  there are a few that only happen once or twice a month. In all, there are 146 with 63 of them being crossovers meaning that they are the same in different illnesses.  

I know that many people experience many of these symptoms at times or even daily in their lives. I am just trying to gather all of the symptoms to help myself and my family and doctors understand what it is that I am experiencing. 


General/or Overall:
The rest of the symptoms are broken down by groupings.

  1. Dysautonomia
  2. Overachiever/ perfectionist
  3. Chronic Fatigue.
  4. Poor balance / Clumsiness.
  5. Difficulty walking on the uneven ground/feeling ground under feet and not being able to walk if it is too dark to see my feet.
  6. Poor / degraded motor skills at times.
  7. Difficulty driving at times.
  8. Insomnia.
  9. Burnout
  10. Poor blood circulation / cold hands & feet & end of nose. Once I get cold my face gets really really hot like it is trying to warm me up and then I get overly hot.
  11. Decreased muscle tone.
  12. Depth perception problems.
  13. Loss of sexual interest.
  14. Slurred speech.
  15. Dehydration / excessive thirst.
  16. Electric like burning sensations.
  17. Joint dislocation and subluxation.
  18. Spontaneous easy reduction or replacement of the finger digits and shoulders.
  19. Hypermobile joints pain, and sometimes the "cracking" or "popping" of them feels like it relieves the pressure.
  20. Sprains  
  21. Easy bruising, delayed wound healing {I always get bruises that I don’t know how I got them}.
  22. Low body temperature, have trouble controlling their body temperatures when exposed to heat or cold.  My normal temp is 96.7 so at 98.7 I am running a temp the same as a normal person would be running at 100.  If I get too cold I can’t get warm and my face gets really hot and red when I am really cold, when I get really hot I feel like I can’t breathe and that I will pass out.
  23. There have been times when it was hard to feel my pulse.
  24. IV (intravenous) access and even sometimes simply drawing blood for testing may require multiple attempts;{Always at least 3 or more tries}
  25. Decreased reflexes. {My reflexes never work when the doctor checks them}
  26. Bipolar feelings of worthlessness and profound depression low self-confidence.
  27. Inability to cope with daily tasks or mental confusion.
  28. Muscular pain.
  29. Near fainting.
  30. Generalized weakness.
  31. Tremulousness -being shaky.
  32. Excessive sweating, face gets so hot and red and then at the end of it I get clammy  - just once in a while.
  33. Exercise intolerance.
  34. Postprandial hypotension - low blood pressure - when I am laying down it can be as low and 89/50.
  35. Intolerance to heat.
  36. Chills - happens sometimes when I lay down, starts in the stomach and moves up and down my body, not really the same as being cold.
  37. Chemical sensitivities – I am very sensitive to medications. 
  38. Weight gain.
  39. Sometimes I get so hot that my skin and face to touch it feels like hot bread out of an oven, my face gets so red and hot that it hurts, my eyes burn and I sweat sometimes and sometimes when this happens I don’t sweat as much but I always end up feeling clammy and then I get chills and my skin looks pale and I get lightheaded and dizzy, my ears sometimes buzz or ring, I get out of breath and my chest gets very tight sometimes my heart races and sometimes if just beats hard, when I cool down it happens all of a sudden and then I feel like I have chills and my arms feel like they were drained like I taken a water pill then I get very very tired and can sleep hard for several hours afterward.
  40. Joint pain in all joints.
  41. Growing pains in childhood very severe.
  42. Pain when changing position
  43. Malabsorption – shown in blood test.
  44. Anemia – shown in blood test. 
  45. Tingling sensations
Head & Neck & Face
  1. Headache (at lower back of head) upon waking and lasts most of the morning, headache in the front on my forehead but my neck feels very tight at the base of my head and neck. Bending forward or looking up worsens the headache,
  2. Migraines.
  3. Vertigo from position change or sudden standing or standing too long.
  4. Mental fog, hard time typing correct letters and remembering what order to do things in, learning disabilities, concentration difficulties. Often search for the right word, sometimes forget how to spell things and have on several occasion have forgotten my name, have a hard time saying the right word correctly.
  5. A sense of not being present; absence of focus or a lack of clarity{sometimes I just can’t focus and remember things that are told to me} Feeling detached from surroundings -  sometimes I can't feel my legs or arms and sometimes I feel like I am just in a daze and nothing around me is real.
  6. Decreased mental stamina
  7. Memory loss.
  8. Tingling / crawling feeling on scalp and both sides of face. When this happens it feels like the top of my head is missing.
  9. Popping/cracking sounds in neck or upper back when stretching
  10. Neck spasms.
  11. Pressure/pain in the neck. Painful tension in neck. Aching neck.
  12. Pain in neck on both sides.
  13. Dizziness often worse with headache, and more noticeable when changing position. I often get headaches and my balance is not great, I tend to tip over at times. Bending over to pick something up always makes me dizzy and short of breath.
  14. Dizzy, can’t lay flat I get very dizzy and when I stand up from laying flat my heart races and I almost pass out, must have several pillows to sleep but I still get dizzy sometimes.
  15. A sensation of spinning (vertigo). Spontaneous vertigo.
  16. Lightheaded, feels like the top of my head is missing.
  17. Flushing.
  18. Rash on face. Across cheeks sometimes a butterfly shape and on forehead is itchy.
  19. Brown skin patches
  20. Hair on chin.
  21. Thinning hair at times.
 Eyes & Ears & Nose & Mouth
  1. Pain & tension along ear / eye / jaw line. Left low jaw pain.
  2. Sensitivity to bright lights, spasm of the eyelids.
  3. Difficulty reading / focusing on text.
  4. Blurry vision.
  5. Tunnel vision on occasion when I get very dizzy.
  6. Pain/pressure behind the eyes (soreness in the eyeballs).
  7. Photophobic, {I always squint my eyes in the sun, sometimes even shades don’t help} 
  8. Dry eyes. hard to focus at times, floaters, sometimes it feels like I have a film over my eyes.
  9. Eyes watering excessively upon waking.
  10. Ringing in the ears at times.
  11. Fluid-like sound in ears (like water running)
  12.  Pressure in ears/ears feels stopped up.
  13. Intolerance to loud/confusing sounds.
  14. Ears ache, like a deep ache.
  15. Sensitivity to smells.
  16. Sinus / mucous problems, always feel like I need to clear my throat.
  17. Clenching of teeth.
  18. Difficulty swallowing/lump in throat / sore throat / swollen lymph nodes at times.
  19. Hypermobile tongue, able to touch at least the end of their nose with it easily.
  20. Drooling at times it seems that I have too much spit.
  21. Tongue stings on sides and tip.
  22. A high palate and crowded baby {when I got my braces I had to have 6 teeth pulled, I had too many teeth for my little mouth. My mouth is small}
  23. Bleeding gums, Receding gums.
  24. TMJ  Often if in a dental chair with mouth open.
 Shoulders & Back
  1. Scoliosis – mild.
  2. Degenerate Disk Disease.
  3. Burning sensation in shoulder blades.
  4. Aching shoulders. 
  5. Low back pain.

Heart& Lungs & Stomach & Kidneys

  1. Tachycardia - fast heart rate and palpitations at rest or on exertion.
  2. Sudden/abrupt changes in blood pressure due to awkward position of head.
  3. Arrhythmias
  4. Heartbeats very hard, can see my shirt pumping with my heart. Pulse was always 80 or lower, about 12 yrs ago I was put on a med for rapid heartbeat (with med 110- without 120 or more)and was taking off them and heart rate was not high again, other than fast heart rate close to my period, now heart rate averages 80 or lower unless I am standing then it is 95 or higher.
  5. Shortness of breath.
  6. Hyperventilation
  7. Chest discomfort and pain. Pressure/tightness in chest
  8. Wheezing
  9. Chest pain, heaviness, aching, stabbing, tightness, catch in side when taking deep breath, hard to get a good breath in, often feel as if I am out of breath, burning sensation at top of lungs
  10. BP always between 120/80 - 95/55 (unless when running temp or having a headache).
  11. Rib pain.
  12. Breast pain, burning sensation and aching.
  13. Nausea.
  14. Reflux and GERD.
  15. Hiatal hernia
  16. Delayed gastric emptying.
  17. Irritable bowel.
  18. Bloating after meals.
  19. Stomach pain, cramps, belching with reflux, heartburn, reflux, gas, nausea, hunger comes on all of a sudden and when I begin to eat I become extremely full very quickly.
  20. Loss of appetite.
  21. Hiccups associated with drinking carbonated beverages.
  22. Menstrual problems / severe cramping during period at times. Irregular menstrual cycles.
  23. Frequent urination.
  24. Urinary urgency
  25. Frequency of urination at night
  26. Urinary symptoms while walking up stairs 
  27. Diarrhea

Arms & Legs
  1. Difficulty or pain walking.
  2. Difficulty negotiating steps
  3. Sever muscles cramps “Charlie horse” in legs.
  4. Legs have purple bumps on them all the time and when I get out of the shower my legs look purple.
  5. Leg pain, shins have stabbing pains often, applying pressure helps.
  6. Intense itchiness on shins.
  7. Major pain in muscles in arms.
  8. Arms feel heavy sometimes. 
  9. Keep my knees bent at night

Hands & Feet
  1. Tingling/numbness –in hands.
  2. Hand tremors.
  3. It is difficult to write, poor hand coordination.
  4. Flatfooted.
  5. Major foot pain all the time, bones in feet roll on top of each other.
  6. Burning under the soles of feet

  1. Soft, velvety skin that is fragile skin is elastic (stretchy) Very soft body as a baby.
  2. Scars that widen over time to create characteristic shallow "cigarette paper" scars.{My surgical scars and stretch marks look like that}
  3. Dry skin and lips.
  4. Intense itchiness
  5. Skin lesions, I get what looks like an inside-out scar and it starts as a bump and will be a sore for months at a time and they itch.
  6. Papular lesions
  7. Skin bumps - 1-5cm diameter, red, pink or yellow
  8. Translucent skin where the blood vessels below are clearly visible. In the bends of my arms, wrists,  and tops of feet.
  9. Severe hives from too much histamine from an SSRI on two different occasions.

I know that it may seem impossible for one person to have so many of these symptoms and diagnoses but if you have Ehlers-Danlos then you know that it is very common.  I am sure that I have forgotten some things for my list and as an update at the time of this posting I have found out a few other things that are wrong with me as a result of EDS.

Please feel free to come back as often as you like to learn about EDS.