Tuesday, June 2, 2009

My Symptoms

    My (yes, all me!) symptoms from EDS, POTS, bipolar disorder and PTSD:
    • Chronic pain (as with most people who have EDS-HM) in the following: neck, spine, back, shoulders, elbows, wrist, hands, fingers, hips, pelvis, legs, knees, ankles, feet, etc.
    • Bursitis (currently in both hips) and tendonitis (elbows)
    • Dislocation of joints (my worst are my knees and shoulders)
    • Subluxation of joints (slipping, almost dislocating, but not completely)
    • Semi-thin skin that tears easily
    • Extremely long healing times
    • Easy bruising
    • Slight scoliosis in lower back and a 'forward-neck' (neck curves opposite of how it should)
    • Sensitivity to latex (hives or rash, not breathing issues)
    • Allergy to adhesives
    • Tape will rip my skin, so NO tape for blood draws, surgeries, etc.
    • Insomnia
    • Restless-Leg Syndrome (diagnosed thru sleep study)
    • Decreased sexual drive (though I went through a period craving sex as a way to connect and receive "love," which I have since come to learn was due to sexual abuse)
    • Irritability
    • Memory Loss
    • Anxiety
    • Chronic fatigue
    • Bruxism (grinding of teeth, especially at night), TMJ Disorder
    • Joint dislocation during sleep
    • Nerve compression in hands (similar to carpal tunnel pain)
    • Knee: recurrent patellar dislocation (knee-cap dislocating) and patellofemoral joint syndrome (PFJ) (dull ache behind knee cap, pain in surrounding soft tissue)
    • Weak ankles, dislocate sometimes, pop/click always, pain after standing/walking, etc.
    • 'Knock-kneed' - foot and ankle aligned wrong, alignment of muscles and bones in legs try to compensate, creating imbalance and more pain, thigh bones rotate in creating more problems (ortho said if this gets any worse it will require surgery to realign the bones in my legs)
    • Clumsy
    • Slight aortic dilatation (needs to be monitored by echocardiogram yearly for possibility of aortic aneurism - so far, just ever so slight and of no worry to cardiologists)
    • Tachycardia (crazy heart palpitations)
    • Orthostatic hypotension (blood pressure lowers when changing positions, moving)
    • Dizziness
    • Passing out (black out - sometimes I am on the verge, sometimes I actually pass out)
    • Severe headaches
    • Migraines (with nausea, vomiting, blurred vision, spotty vision, pain)
    • Eyes - 27 with a cataract in right eye! (which will eventually need to be surgically removed), astigmatism in left eye, need glasses for reading, computers, night-driving, dimly lit rooms, movie theaters, etc.
    • Gum disease
    • Mild asthma, especially with allergies
    • Chronic IBS and other gastrointenstinal problems
    • Chronic UTIs, leading to some bladder infections and kidney infection
    • Scarring on skin is weird - my scars become strange and thin and spread out. Also, everything scars - even paper cuts! - but, most scars spread out and aren't super noticeable, very odd
    • Mild musculoidal pseudo-tumors on elbows
    • Bone loss - until you are after menopause, they just refer to it as low bone density. My levels from my DEXA are all that of osteopenia (pre-osteoperosis) and one level is right on the border of full osteoperosis.
    • Mild arthritis in knees and shoulder, shown on xray (I would bet in my fingers, too!)
    • I have been told I have fibromyalgia as well (my grandmother has it) - though, so many symptoms seem to overlap. I have been treated for this sort of simultaneously.
    • Definitely have issues with the sleep -> mood -> energy cycle (I will talk about this in another post)
    • I have also been diagnosed with Chronic Fatigue Syndrome
    • Mania (extreme enthusiasm, energy, passion, easily distracted, irritable, mean)
    • Depression (no motivation, sleep too much, withdrawn, sadness, despair)
    • Suicidal thoughts and attempts
    • Nightmares
    • Night-sweats

    25 comments:

    Angela said...

    You just pretty much explained my life story as well. I have had, at last count, 5 surgeries on my knees to try to stop them from dislocating. I have tendon transplants, and so far it has stopped the dislocations, but my pain in my knees is worse, and 24/7. I have injections in my C1 and C2 facet joints. I tell everyone that my EDS classical/hypermobility syndrome causes my joints to go out more than I do. I don't think my husband is crazy about that comment...

    Vegan Danielle Davis said...

    LOL! Boy, Angela - do I know what you mean! This week I dislocated 2 ribs, some vertebrae and my hip was out. And, of course, it kept me cooped up in the house not able to move! Getting in and out of bed was the worst. We just have to keep on trucking, though! Since it won't go away, we have to find ways to deal with it. I am scared of the surgeries for the reasons you listed: them not helping or just causing more pain, so for now I have yet to endure any. Hopefully with all of my research I will find something that helps a bit for me - and maybe you, too! :) Have a beautiful day and hope you are feeling as pain-free as possible! xo

    Kristina Jackson said...

    I have just stumbled across your blog when researching the link between POTS and EDS.

    I have a lot of your symptoms, it is quite reassuring to know I am not alone within this.

    I was diagnosed with POTS in 2007 after developing it during pregnancy with my son in 2004. My POTS seem to have got worse over time.

    I am looking for a link why this is and why my legs become weak after a short period of high heart rate, I think I may have found a possible answer.

    Just now I have to find someone in the UK who can help!

    All the best with your journey

    Lizby said...

    Hi Danielle

    I was diagnosed with EDS type III then it was changed to type I back in the mid 90s. It was always known that I had 'doggy joints' and that they ran in the family. However, because I was much more badly affected than other family members due to recurrent dislocations of my knee and 1 finger my diagnosis came when I moved to London and my doctor saw my hypermobile fingers . All my joints are hypermobile and I have those horrid rice nodule things that get caught in my finger joints causing immobility and severe pain. As I moved from late 30s into my 40s all my symptoms have got much much worse. The chronic fatigue, terrible foggy heads and memory fog which I had been complaining about to my doctor forever. My joints get worse as regards to mobility and pain. If I don't do anything - stay home I can control everything and cope on the bad days. Once I go out I have to take both sticks and if a good day can walk a bit but soon the crushing feeling and pain means I have to stop and be rescued. I now have a buggy and try to only use it when I need but it is a definate godsend. I came to your site and info when I google two bits of info. One was that in April my consultaant has arranged for me to visit the autonomic response unit in University College Hospital London because he suspects I have autonomic response disfunction. He said the dizzyness I get when getting up is due to this. He said I would have to use a tilt table and would probably pass out. I am worried about this test and what it means. I have a light mitral valve prolapse - although that doesn't get checked and suffer palpitations from time to time. The other thing I typed into google was ' is being vegetarian safe for EDS suffers'. The reason I asked is because I prefer to be vegetarian but was told that nutritionally it was better to at least eat chicken and fish. Preferably boil the chicken bones and all to get use of the hylauronic acid and collagen. I am trying to keep my weight down and joined slimming world last December and have lost just over a stone which is great. On this diet you can be strictly vegetarian and your vegan lifestyle looks like it would help me. I hope I haven't rambled on too much but as a sufferer you know sometimes how isolated we can feel and how other people just don't always seem to know what to advise and how to help. I look forward to hearing from you.

    Best Wishes
    Lizby Jane Chappell (London, UK)

    Vegan Danielle Davis said...

    @Kristina Jackson - I am sorry to hear about your POTS! Yes, I too have found my has gotten worse over the years, and I know all too well about the weak legs! Good luck in finding someone in your area who is able to help! It is always trial and error to find a good doctor! Giant hugs and lots of peace!

    Vegan Danielle Davis said...

    @Lizby - Thank you so much for sharing your story! Yes, it sounds like you have the same thing as me! EDS 3 and POTS. As I am sure you know, POTS is a form of Dysautonomia. And, it certainly does cause all of those symptoms! You are not alone! I wish you luck. If you have questions about veggie things, feel free to ask too. I am very happy with my dietary changes and I feel a ton better, too! Bendy hugs!

    Anonymous said...

    Hi. My name is Liz and I was diagnosed with POTS a few months ago by tilt table testing. Before that, in 2004, I was diagnosed with fibromyalgia. With so much overlap, I'm not sure if I have one or the other, or even both! Internist says just POTS, rheumatologist insists it's fibromyalgia, and neurologist won't comment one way or another. Neuro. is now trying to determine the cause of my POTS. I am hypermobile, also, and have TMJ, irritable bowel syndrome, restless legs syndrome/myoclonus, myopia (near-sightedness), lumbar levoscoliosis, IgG subset 3 deficiency, migraine headaches, irritable bladder, fibrocystic breast condition, and infertility. As a child, I took ballet, as I was super flexible and so good at it! About four years into it, though, my knees started to lock while walking and I would get stuck in a certain position until I could unlock them. The pediatrician had no explanation but advised quitting ballet, so I did. Also, my feet are totally flat, with no arch. I have had pierced ears since age 9 and the holes have become enlarged and stretchy, such that on the left side the earring can come out from the front of the earlobe - with the back still attached!! Quite strange, really. I don't know my Beighton score exactly, but can do many of the things on the list. I just can't place my hands flat on the floor anymore because it hurts my back too much. My question is this: How do I go about finding out if I have EDS or joint hypermobility syndrome? (If I do, I suspect it is type III - hypermobility type - b/c from what I've read, I don't seem to have symptoms of the other types. Another thing, would it really MATTER to differentiate one from another, as the symptoms are so similar? Would it be worth looking into and having yet MORE testing done, if the treatment is the same? (I've been through so many tests lately for the POTS, and the insurance company has refused to pay, stating that "the outcome of the testing will not affect the patient's treatment." An appeal is in progress, for which my neuro. wrote a letter of medical necessity and included my records. I would appreciate any input you may have, as I have become quite frustrated by my condition and the long time I've had to wait to have the testing done (It took a full YEAR from being referred to the neuro. to having all testing completed!!) Please help.

    Anonymous said...

    Hi. My name is Liz and I was diagnosed with POTS a few months ago by tilt table testing. Before that, in 2004, I was diagnosed with fibromyalgia. With so much overlap, I'm not sure if I have one or the other, or even both! Internist says just POTS, rheumatologist insists it's fibromyalgia, and neurologist won't comment one way or another. Neuro. is now trying to determine the cause of my POTS. I am hypermobile, also, and have TMJ, irritable bowel syndrome, restless legs syndrome/myoclonus, myopia (near-sightedness), lumbar levoscoliosis, IgG subset 3 deficiency, migraine headaches, irritable bladder, fibrocystic breast condition, and infertility. As a child, I took ballet, as I was super flexible and so good at it! About four years into it, though, my knees started to lock while walking and I would get stuck in a certain position until I could unlock them. The pediatrician had no explanation but advised quitting ballet, so I did. Also, my feet are totally flat, with no arch. I have had pierced ears since age 9 and the holes have become enlarged and stretchy, such that on the left side the earring can come out from the front of the earlobe - with the back still attached!! Quite strange, really. I don't know my Beighton score exactly, but can do many of the things on the list. I just can't place my hands flat on the floor anymore because it hurts my back too much. My question is this: How do I go about finding out if I have EDS or joint hypermobility syndrome? (If I do, I suspect it is type III - hypermobility type - b/c from what I've read, I don't seem to have symptoms of the other types. Another thing, would it really MATTER to differentiate one from another, as the symptoms are so similar? Would it be worth looking into and having yet MORE testing done, if the treatment is the same? (I've been through so many tests lately for the POTS, and the insurance company has refused to pay, stating that "the outcome of the testing will not affect the patient's treatment." An appeal is in progress, for which my neuro. wrote a letter of medical necessity and included my records. I would appreciate any input you may have, as I have become quite frustrated by my condition and the long time I've had to wait to have the testing done (It took a full YEAR from being referred to the neuro. to having all testing completed!!) Please help.

    Liz said...

    Hi. My name is Liz and I was diagnosed with POTS a few months ago by tilt table testing. Before that, in 2004, I was diagnosed with fibromyalgia. With so much overlap, I'm not sure if I have one or the other, or even both! Internist says just POTS, rheumatologist insists it's fibromyalgia, and neurologist won't comment one way or another. Neuro. is now trying to determine the cause of my POTS. I am hypermobile, also, and have TMJ, irritable bowel syndrome, restless legs syndrome/myoclonus, myopia (near-sightedness), lumbar levoscoliosis, IgG subset 3 deficiency, migraine headaches, irritable bladder, fibrocystic breast condition, and infertility. As a child, I took ballet, as I was super flexible and so good at it! About four years into it, though, my knees started to lock while walking and I would get stuck in a certain position until I could unlock them. The pediatrician had no explanation but advised quitting ballet, so I did. Also, my feet are totally flat, with no arch. I have had pierced ears since age 9 and the holes have become enlarged and stretchy, such that on the left side the earring can come out from the front of the earlobe - with the back still attached!! Quite strange, really. I don't know my Beighton score exactly, but can do many of the things on the list. I just can't place my hands flat on the floor anymore because it hurts my back too much. My question is this: How do I go about finding out if I have EDS or joint hypermobility syndrome? (If I do, I suspect it is type III - hypermobility type - b/c from what I've read, I don't seem to have symptoms of the other types. Another thing, would it really MATTER to differentiate one from another, as the symptoms are so similar? Would it be worth looking into and having yet MORE testing done, if the treatment is the same? (I've been through so many tests lately for the POTS, and the insurance company has refused to pay, stating that "the outcome of the testing will not affect the patient's treatment." An appeal is in progress, for which my neuro. wrote a letter of medical necessity and included my records. I would appreciate any input you may have, as I have become quite frustrated by my condition and the long time I've had to wait to have the testing done (It took a full YEAR from being referred to the neuro. to having all testing completed!!) Please help.

    Liz said...

    Oops, sorry to have posted THREE TIMES!!! Cognitive problems are so much fun! Liz

    Viviana said...

    hi! i started crying because i feel im not alone for the first time...my life has turned around dramatically from being a ballerina, artist, student, and employee to laying in bed and being scared to dislocate something or having a heart attack....Im trying to keep my head up but it is so difficult specially with the chronic fatigue. I can seem to swallow the reality of life yet. I don't think I will so easily since i already had so many amazing things happening for me and great plans..

    thanx for ur blog and i will try to keep the fight :)

    best wishes Viviana (Puerto Rico)

    musikercia said...

    Hi
    I`m from Sweden och have EDS type I anda III and have just started a blobb http://edsliv.bloggproffs.se. I like your site and it hit me that we all tell the same story och are suffering verry much. I miss more sites like this at home. Perhaps you can give me links to more if you know?
    Thanks Skrutten

    erin said...

    thank you. Really.

    Lisa said...

    Thank you....

    I have been diagnosed with all this craziness of doctors thinking I am crazy. Everything you've said describes me so closely its scary but relieved at the same time. I haven't been tested yet, not going to lie im a little scared, but I know deep down I am. Every symptom you have listed was a checklist compared to mine and its virtually 100%. I've been researching more on this disorder but I guess im trying to find the right doctor to go to.... any ideas? Im 25 and live in so cal so how can I search for a doctor who will listen versus one who will just think im crazy....

    Alida said...

    I have EDS hypermobility with generalized anxiety disorder among other things. I'm always doing research. This is the latest thing I've found, and although I don't have POTS, it reminded me of your blog. The paper is very informative and offers a possible solution for EDS patients with many neurological manifestations and POTS. It also explains why some EDS patients first notice symptoms after a viral infection. I was fine until I had Mono, and then everything fell apart.

    http://prettyill.com/videos/watch/why_eds_pots_patients_are_so_ill_relief_the_driscoll_theory

    Jeanine said...

    Hey Im 14 And I Have EDS And HMS And Ive Been Getting Really Bad Back Pains And Others And It Confused Me With Made Me Look More Into My Condition And Out Of All Your Symptoms Theres Only Maybe 3 Or 4 I Dont Get... But This Helped Me Understand What Pains Are Caused By EDS And What Isn't :)

    Anonymous said...

    Hi Danielle!
    I found a video of you on you tube while trying to find an answer for my pain. I am 31 year old male and I have had chronic hip and shoulder pain for over 8 years now. During work I dislocated my shoulder and tore it in 5 places the pain never goes away. I also have severe chronic hip pain, I can dislocate both of my hips on command which I rarely do due to the amount of pain after words. I have noticed when I lie down my hips slip out of socket which explains the sleepless nights. I have an extremely restless leg and often thought I would be good at being a drummer lol my leg keeps a good beat that's for sure:) I also get very irritable and have fluctuation mood swings. I haven't worked for 8 months due to the pain and it sucks knowing that the dr's can't find anything wrong with me! I just wanted to thank you for making this site, it gives me some relief knowing that there may be some help for me after all!!!

    Blessings to you!

    Anonymous said...

    I have a lot of health issues as well. I have not gotten tested for this yet. IS your teeth infected with this. I had 12 teeth pulled. I had root canals that didnt work. I got 11 dental implants. The teeth can be healthy and need a root canal. I have lost of health issues- spinal issues with ddd, mitral valve and retgrio, stomach, prolapse, eosopholic esophagus etc. goes on I think.

    Melissa said...

    Geez. Like many people on this board, I have to say... it is very very reassuring to finally find someone my same age who is facing many of the same things. (For me, EDS, CFS, fibro, anxiety.)

    Shawn Marie said...

    Hi Danielle. Nobody has really come out and said that I have EDS, but I have most of the same symptoms that you have, but so far, no dislocating. And it's clear that my daughter has it. She can pull her neck skin out like one of those lizards that puff out. Our doctor looks at her flat feet, hypermobility, stretchy skin, heart issue, and says EDS, most definitely, but he refuses to tack that diagnosis on my chart. Her dad doesn't have it and it came from somewhere.

    I just turned 51 and have full blown osteoporosis (the worst number is -3.6 on one hip), had early menopause due to adenomyosis, interstitial cystitis, fibromyalgia, IBS, GERD (which I have cured with DGL licorice), scoliosis, sicca syndrome, arthritis, sleep disorders (apnea, clenching, restless leg syndrome); history of lipomas (just had a grapefruit-sized one removed from my sacrum a few months back); chronic achilles tendonitis, epichondilitis, and bursitis; gum and teeth issues (just broke a molar in half recently, and my gums get raw and irritated. I also get ulcers on my gums); hypermobility (7 on the Beighton scale, but only because I can't bend my thumbs back anymore, otherwise I'd be at 9; chronic pain most joints, especially wrists, thumbs, elbows, hips, & knees; locking of knee (maybe this is a pre-dislocating thing-who knows); depression; anxiety and panic disorder; PTSD; major heart arrythmias (PACs mixed with tachycardia and bradycardia every second to fourth beat, which has resulted in having to go to E.R. to bring the rhythm back to normal with Lopressor-can't take it all the time because it causes fluid retention in lungs and asthma); many allergies; a positive skin biopsy for Lupus with a subsequent negative one; skin cancer x 2, muscle twitching and cramping; rashes (face and abdomen); easy bruising; slow healing; and a slew of other issues.

    I am living with this, but I'm so bothered that my 14-year-old daughter is symptomatic much earlier than I was. I had weird things going on all my life but I didn't have noticeable problems until I was in my late 30s. Ella has them already. Her flat-footedness is an issue, and she lives with pain daily. She also has electrical problems with her heart, like I do. It just seems that it's increased in severity over the generations. My mom has a more mild form, and was never disabled like I have been.

    Thanks for sharing your story. It's good to know I'm not alone, yet I wouldn't wish this on anyone.

    Anonymous said...

    Hi, my friend showed me your blog because my son (2 years old) has been diagnosed with EDS and I have many of the same symptoms (joints dislocating, easy bruising, loose ligaments, skin tears easily, muscle/joint pain).

    I am 28 years old and I also have bipolar disorder, fibromyalgia (we think - could be that or EDS?), chronic fatigue (again, we think), asthma, allergies, anxiety, IBS and migraines. I can pop out my knuckles without pain, but when my knee goes, it's hell.

    I'm on many meds, unfortunately, but am working on losing 123 lb (23 lb there already!) and eating super healthy, exercising, and I'm feeling slightly better in the pain department. Like you, I grind my teeth (anxiety? It is for me, I'm sure).

    My son has episodic ataxia (we are doing genetic testing, the geneticist actually dx him with EDS when we went for the ataxia, but she doesn't feel they're related), asthma, many food allergies, migraines, and kidney damage/disorders. He and I get a lot of UTIs, his because of his kidney disorder.

    It's amazing to see your blog, to know I'm not alone in this. Managing his and my illnesses is very difficult and I'm glad to see there are good resources out there.

    Love to you.

    Mary

    Anonymous said...

    Glad to see this site. There are so many issues related to EDS, I am in the midst of seeing a geneticist who seems very jaded. I was labeled a hypochondriac and attention seeker, as well as "overly sensitive" and clumsy, even "accident prone by my own family who did not want to investigate when my left patella partially began dislocating around age 12, and fully dislocated later, after that. I had a lateral release arthroscopic surgery. aand it helped alittle, tleast it did stop dislocating. Now at 39, it gets "caught" on the edge of the patellar track if I do not keep up with PT at home. It seems like I need PT for everything, and this is overwhelming.

    The fact that my family told me all these negative things growing up damaged my self esteem greatly, and I grew up unheard, feeling insignificant and depressed. I learned to deny my symptoms and "go somewhere else" in my mind when my pain was bad, and I worked out all the time. Popping continued and a slight touch on my jaw dislocated it. I had my wisdom teeth out and the ortho couldnt believe my abnormal jaw, how it rocked out of place so easily. I medicated with diet coke of all things, and it would take me an hour to straighten myself out to go to sleep and wake up confortably the next day, I started this around age 13. The diet coke make me vomit, 5 a day changed my chemistry in my body to overly acidic and dinner was never digesting. I was misdiagnosed with "bulimia" and sent to a therapist, and then started binging because she expected me to! Just terrible.

    I was flagrantly diagnosed with Bipolar, which I had one kind therapist tell me : "No you are just angry." Which I am. I have scoliosis and have dealt with vomiting constipation and IBS ruining my days. Not to mention pain. Then I get slack for finally having enough pain taking my life from me after a rotator cuff tear and getting on opiates which do help tremendously. I feel like no one wants to understand so I am glad this info is here in your blog.
    My fingers are bent and rhematoid looking, I have the bent heart aorta, believe I experienced a heart attack at age 27, and sleep is always a difficult thing, I have to be exhausted to finally sleep soundly. After 5 car accidents, I have trouble waking after too long of sleep due to immense stiffness.

    One thing I suffer that I did not see mentioned is terrible dry eye to the point that where I live, the desert, causes me to have dry patches all the time, and it is as if I cannot get enough lubricting eye drops. It is an expensive disease. I agree that chondriton or eating fish feels better to me than other meats. I fear my daughters hve it, they are sensitive, bruise and cut easily (like me) and my son was born with Downs, know for loose ligaments.

    Not an easy hand to deal with. Glad to read your posts so that I can gain more education through this misunderstood journey and carry on.

    Anonymous said...

    I was just diagnosed with EDS after suffering through 3 spinal surgeries in a 6 month period last year because my loverly, stretchy connective tissues decided to not want to hold the discs in between my vertebrae. I've also just been diagnosed with fibro and degenerative disc disease. My right ankle slips weird sometimes, almost every joint in my body pops, i have those awful muscle knots on my shins and arms (accompanied by crazy bruising from rubbing them), woke up with a dislocated collarbone for no reason, have broken both feet and dislocated both ankles, toes, fingers, and sometimes my shoulders feel like they'll come out of socket. my rheumatologist says they're nothing they can do for me except refer me to a pain management specialist.. and nothing in the world gives me the slightest pain relief except marijuana. What did you do when you were diagnosed? Where do I need to look for more information about this hell and the treatments for it? It's devastating and scary. I'm glad I stumbled across your blog.

    Kristi said...

    Wow, I'm so surprised to find someone just like me! I don't feel alone anymore. I'm 31 but have been suffering for years, only got diagnosed with eds this week. But I also have bi polar type ii, and PTSD from a car accident four years ago. But I read your list of symptoms and it was really spooky, thankyou for sharing your story. It means a lot to know it wasn't in my head and I'm not the only one.

    Anthea D said...

    Hi I am off to a conference in parramatta this weekend on EDS and hypermobility related disorders. I am hoping to learn more about it all. Hypermobility affects myself and my children. Recently I stumbled upon an article by Alan G Pocinki called Joint Hypermobility and Joint hypermobility syndrome. This article has been very enlightening for me because of the connection between hypermobility and the excessive amounts of adrenalin, which then impacts on many other things, especially the autonomic nervous system (affecting breathing, digestion, heat rate and blood pressure) and insomnia. And insomnia seems to make everything so much more hypermobile. When I looked through your list of symptoms I wondered how much of these things connect to the adrenalin and autonomic nervous system problems.Here is the link to the article. i hope it is useful to you.http://www.dynakids.org/Documents/hypermobility.pdf