Advanced warning that this will be long. And if it should be put into a different section please let me know.
My name is Jennifer. I’m 30 years old and have been fighting symptoms and knowing “something is wrong” my entire life. My parents didn’t bring my brothers and I to the doctor for anything and I spent several years as an adult without any insurance at all so those factors mean I pretty much have 30 years of no medical records or tests whatsoever.
Within the past year, I have seen a therapist and started going to a doctor to begin tackling my Mystery Body. The therapist diagnosed me with Depression, Anxiety and PTSD. I have always had low levels of anxiety from the time that I was born. Even in my very first memories I can tell there is a certain level of anxiety there. With some unpleasant life circumstances, that progressed to a full blown nasty case of Social Anxiety, Generalized Anxiety, panic attacks and even a bit of Agoraphobia. I know that I had anxiety struggles on the mental side of things but, after going through a horrible low point about 15 years ago, I healed and recovered quite a bit but noticed that there were some lasting issues. Now, healing anxiety is an ongoing lifestyle type of thing and it will come back on you if you don’t take care of yourself but I noticed something else. It always felt like my body was having a much stronger reaction to stress than what my mind was doing. It didn’t seem like it could be dismissed as “just” Anxiety.
Years ago, I was trying to figure out what these weird itchy bumps were that would randomly appear on my body. I came across info on Dysautonomia but there wasn’t much available at the time and not much that I could do with it so I just set it aside. Now, after my current research into autonomic dysfunction, it feels like the physical-not-mental anxiety issue I would have could fit the exaggerated Fight-or-Flight response. I watched a series of videos from the CSF Colloquium from 2011 about EDS patients. Oh my goodness, such a wealth of information there! Dr. Alan Pocinki did a presentation about how autonomic dysfunction can affect sleep and it was like he was talking about me. It was amazing. He also has a handout that people can download and print out about joint hypermobility.
I finally came across info about those itchy bumps again and I see that it matches what is described for Mast Cell issues. I also have dermatographia where I don’t necessarily welt unless there is an allergen trigger (like if my cat scratches me) but I absolutely can “write” on my skin. I’ve even played tic-tac-toe on myself. I get random flushing and bright red patches on my body (typically neck and chest). I will get these tiny bumps that are not exactly like welts and they are typically surrounded by a patch of bright red inflamed skin and accompanied by an insanely intense burning itch. They show up more often after or during a shower so I thought at first maybe it was heat or even water. But they show up at other random times where I could be freezing just sitting on the couch. They typically pop up on my abdomen, can wrap around to my back, my neck, my face, my hands, and occasionally my arms. Usually just one at a time but sometimes I have had multiple ones pop up and that is not fun.
I have always had what I now know is hypermobile joints. On the Beighton scale, I am an 8 or 9 out of 9. The only questionable one is touching my palms to the floor. I’ve never really been able to do that and I can get my palms flat if my knees are slightly bent but not completely straight. It’s close though because I can get my fingers flat on the floor with my knees straight. Reading about how to protect loose joints, I see that I have come up with many things already on my own. As a kid, I could tell that my joints went too far and I was mindful of it. I would try to avoid full range of motion and I had to pay so much attention to my legs because my knees could just shoot backwards on their own and that is incredibly painful. My ankles constantly bend in or out and I began to wear boots that go above the ankle to help add some stabilization. When I was about ten years old, I was running in gym class and my ankle gave out. There was no track or gymnasium so we had to run in the parking lot. I was running on the curb and my ankle bent so much that I felt the underside of my shoe touch the inside of my ankle. I was horrified and thought that I must certainly have broken my ankle but to my amazement it only felt a little irritated and wasn’t broken at all. I have a number of cases like that where I bang or twist a joint and common sense would say that it must be broken but it’s not. I either broke or dislocated some toes when I maybe 6 or 7. No older than 8 I believe. I stubbed my toes on the door frame of the kitchen and I didn’t even think it was that hard but the pain was excruciating. The two outer toes on my left foot turned purple and black. I don’t know exactly what the injury was because I was not brought to a doctor and was just made to continue walking on it and going to school. Several years ago, I was simply coming down off of a step and I felt my big toe snap. This was also on my left foot (that poor thing takes a beating.) For weeks afterwards I had intense pain around the joint. I didn’t have insurance so I just waited to see how bad it would get before I went to a doctor. It healed but I can still have some pain in it every now and then as well as the occasional popping feeling.
It seems I have to break this up into another part. Thank you for bearing with me!
My knees have been a huge problem for me especially starting in my teens. I used to work at a Target store and my coworkers constantly pointed out how my knees were always popping, cracking, and grinding. One coworker said that it sounded exactly like her knees and those of her family and they all have arthritis. I started poking around looking for info about that and I fit the descriptions for arthritis quite well. It has continued to progress to the point that I can’t do many things. There can be an almost constant joint pain with random flare ups with various symptoms. Sometimes excruciating pain, sometimes a warm, burning sensation, etc.
I have had sleep issues either for years. I don’t even know when it started. I can say that for the past several years, I never feel rested even if I was unconscious for several hours. I have terrible insomnia where the idea of being unconscious for several hours is laughable now. I’m a very light sleeper. I can feel completely wiped out and my mind will not be racing or anything like that and my body will just not go to sleep.
I have had horrific stomach issues. Every single day I have had horrible acid issues. And with a past with anxiety and nausea/vomiting, there is a scary amount of acid that has come up my esophagus. It has even gone up into my sinuses and, if anyone else has had that, you know it is awful. You feel the acid burning your tissue and you can’t do anything to stop it. I did a 4 month stint on Nexium that ended a couple months ago and it was great at first. But instead of the burning throughout the day and night, I ended up having what I describe as acid coughing. I would snap up at night with a sudden horrific cough and it felt like acid was spraying my throat. It ended up happening every single night so I stopped Nexium. Turns out I made the mistake of not weaning off of it so I had unbelievably bad rebound acid. Side note: I tried the combination of Zantac and Zyrtec for the first time last night and I had the best night sleep I’ve had in several months if not longer.
I have an appointment at the end of the month to see a Gastroenterologist to check what condition my esophagus is in after all of these years of acid.
The Driscoll Theory (thank you Dr. Driscoll!!) has been an amazing find that I have only just started learning about. Because in addition to a loooong list of other issues, I have what I believe is pressure on my brain. It’s exactly what it feels like. I have the constant pain and pressure in the back of my head. If I lean my head on something or at a bad angle the pain and pressure shoot up. If I lay down flat, sometimes I am immediately overcome with excruciating pain in my head that becomes a migraine and does not go away as soon as I get back up. It takes awhile to fade. I have had a few instances of clear fluid coming out of my nose that didn’t seem to be nasal drainage but I dismissed it as such anyway. That might still be the case but I am curious about spinal fluid now.
Uh let’s see. My brain is getting foggy and I don’t want to forget anything. Um, lifelong random heart palpitations. Chemical sensitivity that causes horrible coughing and nausea. light and noise sensitivity that has gotten worse within the past two years as well as sudden intense motion sickness. Migraines, ice pick headaches, pins and needles feeling in my extremities. My legs and arms can very easily go numb now. My feet can turn red and purple and I also get livedo reticularis. I never really get sick but I had a cold for an entire month last fall and that seemed to trigger another decline. I have to use a cane for balance now and I am extremely weak and fatigued all the time.
I have Essential Tremor that mainly affects my right hand but now also affects my head and other random things. There was a shaking in my legs that I thought was possibly connected to ET but I learned just yesterday that it fits clonus. I had a Tilt Table Test that was completely normal but when I got up off of the table, my body was shaking and the nurse grabbed me to make sure I didn’t fall to the floor. The first thing out of her mouth was to ask if I have MS. Unfortunately MS seems to be more and likely now as well.
Before I forget, I have had tons of bloodwork which all came back supposedly “normal.” I had a brain MRI which I was told was normal and I got copies of it but don’t know what I am looking at. My doctor originally suspected Mitochondrial Myopathy and Muscular Dystrophy. The bloodwork for that was also uneventful. At my last appointment, I brought up EDS and POTS so I had the Tilt Table and now I am in line to see a neurologist familiar with autonomic dysfunction as well as a geneticist who has experience with EDS. I saw a neurologist in January who completely dismissed me saying it was all Anxiety and then basically accused me that if I tried to get a second opinion then I would be one of those patients who hops from doctor to doctor until I “hear what I want to hear.” And I knew way more about Essential Tremor than him which doesn’t help my confidence in him and I was having difficulty walking right in front of his face and he didn’t care.
So I am doing the best I can to gather info but I feel a bit overwhelmed with not knowing exactly what to ask and what to look for. Especially since a lot of doctors might not be well-verse in these things. I know there are so many more symptoms that I am not listing right now and I thank everyone who has even made it this far. Thank you so much for your patience. And to Dr. Driscoll, thank you so much for your hard work and all of the information you put out there. Your videos have been wonderful and have helped me connect the dots to what I knew was going on.
I have no idea if these posts made sense. I’m concerned about EDS, Dysautonomia, Mast Cell issues, cranial pressure, etc. Do you guys think I’m on the right track? How do I help doctors help me?
hi! i just want you to know you are not alone-but right now i am going through the same things you are and it’s been my whole life with weird things and i have gotten worse 22 years ago! yesterday i spent the entire day reading old posts and felt better just reading them. i started out at the top and have read some of Barbara’s and “give my daughter the shot” they are great-you learn a lot. i still have a lot of reading to do. it helps you feel better that your not alone but it does not help dealing with dr’s. i just had a ttt done at the cleveland clinic and i think they did it wrong. but i am just a stupid patient! sometimes you read a topic and you have “ah ha” moments like dr diana talks about, don’t forget to watch the videos. i don’t know how to help you but i just want you to know i care about what your going through and i would help you if i could!!!
I read to the end of both of your posts last night but was too tired to reply (I’m sure you know the feeling well!) and your plight is so similar to many, as I’m sure if you read through the posts, you’ll see. I’ve only been suffering from this for 11 years, due to a fall but it breaks my heart to hear of those who have spent half a lifetime in this vulnerable state, trying to get help and answers.
I have often wondered ‘why?’ we are all treated this way WORLDWIDE, this reluctance to investigate and diagnose us properly, it didn’t make sense but yesterday evening, a GP on TV here in the UK, who was talking about Alzheimers, said something curious. I was only half listening, so can’t quote him verbatim but he said something along the lines of, nobody want’s to diagnose these people because they don’t want them, as they can do nothing for them - so technically doctors are selecting which patients they wish to deal with, this is hardly moral.
The Hippocratic Oath says something like ‘first do no harm’ yet by not diagnosing, they are causing MUCH harm, physically, emotionally and financially. The physical and emotional side we all understand but for those without partners (or who’s partners leave - often due to lack of diagnosis) it’s even more of a nightmare. It’s much easier to get a disability benefit if you have a diagnosis, or at least a partial diagnosis, otherwise, so much of your much reduced (through illness) quality time, is spent filling in forms, having assessments and battling to win tribunals, fighting to keep your head above water - madness!
Steps down off soapbox . . .
Forgot to mention Jen, have you tried Zantac for your gastric acid reflux (GERD) issues ? It certainly helps mine. I also have vitamin C, which I drink when I’m eating, as it aids the stomach in digesting food.
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy); Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium) deficiencies, CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies; Myalgic Encephalomyelitis (M.E.) . . . . and now Growth Hormone Deficiency (due to flattened Pituitary Gland)!
Thank you, Dab and Barbara! I don’t get emotional but you guys make me want to tear up because I am so used to being dismissed and never receiving support from people. *Internet hugs!*
I’m trying to learn what I can and Dr. Driscoll as well as all of you lovely folks are such a huge help.
I’m on my second day of Zantac 150mg and it is going well. I have been able to actually lie down and attempt to sleep at night when I typically was kept awake all night with horrible burning and being stuck in an upright seated position. Fingers crossed it continues to go well. Nexium started out okay but definitely was not the right medicine for me so I hope that, since Zantac approaches stomach acid in a different way, I will have more success with Zantac.
I also got one of those travel pillows that wrap around the back of the neck and oh my goodness that has had a bigger impact than I thought it would. The back of my head and neck having support has seemed to (at least slightly) ease the constant headache I have back there. It reminded me of when I was younger and I would sit on a bean-bag chair. I would settle into this super comfortable position that would support my neck and it would cause me to pass out for a good hour and a half. I never could take naps and yet that bean-bag chair would cause me to knock out for a full REM cycle no matter what. It was the best rest I had. I keep trying to find a way to recreate that. If I sat in a bean-bag chair now I would probably not be able to get back up.
I came across all of this EDS stuff by chance just a couple months ago when I was looking online for finger splints. I can have absolutely excruciating pain in my finger joints that require them to be completely immobilized. All of my fingers bend farther back than they are supposed to and without any effort at all. I didn’t realize that I have always held my pens and pencils more tightly than “normal” folks. The tip of my fingers can bend back over 60 degrees so, in order for me to hold on to anything, I have to have a very tight grip on it. It even resulted in a big corn or callous type thing on my middle finger from the constant pressure and rubbing. I recently started wearing Oval 8 plastic finger splints made by 3PP. What a difference! My joints are actually held in place! I put one on the end of my index finger and it completely alters how I hold a pencil. It’s like I have to learn how to write all over again.
In my newbie research, I see over and over and over again how many people suffer from the same issues. I know I am preaching to the choir when I say I just don’t understand how doctors don’t see it or are not willing to look deeper. That first neurologist I saw screwed me over too because 3 other neurologists refused to even meet with me after that. I tried to go with what I thought was an easier path since I so obviously have Essential Tremor and tried to meet with a neurologist who specializes in movement disorders and Parkinson’s and ET specifically. His office didn’t even bother to call my doctor back and an entire month went by before my husband and I were able to get a hold of them on the phone directly. The receptionist said that doctor refused to see me because he “really only works with Parkinson’s.” And yet what do I find on Youtube? A video posted only 4 months prior of that doctor discussing Essential Tremor. They lied to me. And if he didn’t want to treat me then okay that’s fine but they could have given me the courtesy of saying so from the beginning. I spent a month researching doctors and picked him and then another waiting. Two months spent on that man when I could have been trying to find another doctor who isn’t a butthead. Fortunately my PCP is pretty decent and seems somewhat familiar with odd conditions. That first neurologist definitely did not help my concerns about being dismissed. It took a lot for me to ask for help. But I shall not be broken! I haven’t broken yet and I am not going to start now. I know I deserve to be treated better even if other people don’t seem to agree. And all of you lovely folks in this community contribute to making the world a better place every single day. Giant internet hugs for everyone!
You sound a lot like me. Have you seen a geneticist yet? They can be the biggest help in getting the diagnosis of EDS. It sounds like you have EDS, and with the symptoms you are describing it sounds like the classical form.
Hi Lab-Scientist-Lady! I love your name by the way.
Thank you so much for your response. I have an appointment with a geneticist in November. I am really hoping I can get some answers or at least some good info to work with. I’ve always had to handle things on my own and had a terrible appointment with a neurologist back in January so I am rather nervous about my upcoming appointments. I am dreading the possibility of more doctor unpleasantness but I know very well that doctor unpleasantness is a common occurrence for EDSers. Fingers crossed these appointments of mine won’t be too bad. The first doctor I am seeing is a gastroenterologist in about two weeks and then a neurologist a couple weeks after that and the geneticist in November. I’ve never been to a gastro or geneticist before (and my only experience with a neuro was a nightmare followed by 3 others who refused to even meet with me), all of this EDS stuff is new to me, and I have pages and pages of symptoms (not to mention all of the new stuff that pops up as well as all of the things that I am still learning are actually symptoms) so it’s a bit overwhelming to figure it all out. What’s worse is that my brain has apparently decided to take a leave of absence and has been waaaaay more foggy than it ever has been before. I feel like I’m losing my mind and can’t function at even half the level I did just a few months ago. It’s amazing to find all of you lovely folks. I have never known or heard of anyone else who experienced the same things as me so it is still strange to not only find out that there are others out there who are like me but that there is also actual conditions and names for all of these experiences. Suck it, everyone who called me a hypochondriac and treated me like an idiot! Booyah!
Continuing the insanely long post:
...... Before I forget, I have had tons of bloodwork which all came back supposedly “normal.” I had a brain MRI which I was told was normal and I got copies of it but don’t know what I am looking at. My doctor originally suspected Mitochondrial Myopathy and Muscular Dystrophy.
I found the mention of Muscular Dystrophy rather curious because some of the genes involved in collagen production (e.g.COL6A1) have been found to be defective in some of the rarer forms of Muscular Dystrophy (particularly “Bethlem” and “Ullrich’s”). I would ask what kind of test was conducted to rule these out, were they looking for something raised in your blood (e.g. Creatine Kinase - which, incidentally, isn’t always raised) or did they actually carry out genetic testing.
Barbara, I’m not entirely sure exactly what my blood has been tested for. I’ve asked but haven’t been able to get detailed answers and so now I am trying to get copies of the results so I can have a checklist of everything that has been tested for and what the exact results were. I do know that my blood was sent to have specific testing for mitochondrial issues that I believe only a few locations in the US actually perform. I was given the vague answer that my results did not show a sign of mitochondrial dysfunction but “that doesn’t mean it isn’t there.” Nothing has been officially ruled out so MD is still included in the long list of things that are possibly going on. After I mentioned EDS and Dysautonomia to my doctor, she seemed to think that a connective tissue disorder was perhaps the cause of my problems and that it could replace the Mito/MD theory. I haven’t abandoned it myself because I am simply remaining open to where the evidence takes me. I assume nothing. Within the first half hour of my very first appointment with my doctor (last December), she seemed concerned and I could tell that she thought something was wrong. In my second appointment, she mentioned that I have muscle wasting in my right hand (dominant hand)and that in combination with muscle weakness and weird muscle tics led her to suspect Muscular Dystrophy. I had some nasty hits to the head as a kid so I was sent for a brain MRI and my doctor also set me up to meet with a neurologist. Since the neuro appointment went terribly, it seemed like everything just kind of got stuck and months have been spent simply trying to find anyone who would be willing to meet with me. I recently had a tilt table test and my heart rate and BP were weirdly stable the whole time but I almost fell on my face as I was getting off of the table. The nurse immediately asked if I have MS. I do seem to have symptoms similar to MS and MD but there is so much overlap with so many things that it is hard to figure out what is a good lead and what is not. A neurologist that I am seeing in September supposedly has good experience with autonomic dysfunction as well as neuromuscular issues and movement disorders. I was being sent to him for Dysautonomia but I’m going to throw in my tremor and MS/MD issues as well. Squeeze as much info out of him as I can get. It was just by chance that I came across info on EDS and later Dr. Driscoll and it all makes so much sense. Mito/MD/MS potentially might fill in the blanks for the weird things left over that EDS does not explain.
Haha, oh yes, fun times indeed. The more I learn about MS symptoms, the more I see that I definitely have some overlap there. Ulnar neuropathy, the MS hug, spasticity, tremors, vision changes, occasional difficulty swallowing, weakness, etc. I am still learning. I don’t know yet if MS-like symptoms can be triggered or if they only progress on their own but I have definitely had worsening symptoms ever since I had a cold last fall. Along with progressive clonus and other myoclonic-like tics and spasms, a 40 pound weight gain in less than a year, worsening sleep which was already bad to start with, dyshidrotic eczema decided to show up, head/neck pain that continues to get worse, racing heart rate, and all kinds of fun things like that. I just ordered a 23andMe test so I hope to learn something useful from that. Fingers crossed I get my results without too much trouble because it seems there have been some issues there according to the 23andMe Facebook page.
I have always had symptoms my entire life but I seem to have had two trigger points within the past few years. Last fall was a cold that triggered and/or worsened many of the aforementioned symptoms and I think I may have had a prior trigger a little under 3 years ago. I have no idea if I had a cold around that time or not. I can’t remember anything other than I know exactly when things seemed to change. My husband’s grandfather passed away and we had to drive halfway across the country to attend the funeral. I had had bouts of motion sickness in the past but nothing too strong and very infrequent. Well, that trip was absolute torture. I thought I had gotten food poisoning. We had to stop a few times so that I could vomit on the road. I have had horrible anxiety attacks in the past so I am practiced in trying to control nausea but this was horrific. And I have had terrible motion sickness ever since. I have to take dramamine every single time I get in a vehicle now. Some days I might forget and it seems to be a luck of the draw what the effect will be. Occasionally I might only feel a bit off and unwell and not hit quite so hard. And roughly around the same time that the motion sickness started, my menstrual cycle changed. It had remained constant and unchanged for the prior 14 years or so and yet suddenly the length/intensity cut in half. It still followed my typical 28-30 day cycle but it lasted for half the time and was much lighter. It has remained that way ever since. I mentioned it to a doctor who said “Meh, that just happens sometimes.” Which is certainly true but seems more suspect when it also matches other noticeable body changes that are occurring at the same time. Has anyone else experienced sudden changes like that?
I have my first ever gastro appointment in 4 days. I’m nervous and, even with a list, I’m afraid I will miss something. I have soooo many gastrointestinal issues it is hard to know where to start. My main concern is what condition my esophagus is in after nearly two decades of intense and constant acid exposure. Other concerns are possible inflammation, hernias, a weak or misaligned esophageal sphincter, delayed emptying, gastroparesis, IBS, Celiac-like response (previous bloodwork claimed I did not have Celiac but I don’t know about a sensitivity), bloating (I pretty much look a couple months pregnant 100% of the time and sometimes my stomach expands as if I am several months pregnant), etc. I am so desperate to know exactly what is going on and why. I want information so I can fight back. I am so grateful to have found PrettyIll!
I have the motion sickness, nausea, and vomiting too. It goes along with EDS. I carry barf bags with me everywhere I go. I have for years even before I knew I had EDS. My mom has the same problems, but mine is worst. Some of I believe is because of hydrocephalus and some of it is because of our vagus nerve. As a child I always got car sick. I guess that is why I never realized it was something bigger. All the years of weird symptoms and now I know it is because of EDS. Also, I have problems with my cycles too. I have Poly cystic ovarian disease or polycystic ovarian syndrome. Because of that I have irregular cycles, struggled with infertility, and miscarriages, currently I take metformin and a low dose Progesterone only minipill to control my cycles. Hormonal problems go along with Ehlers-Danlos syndrome.