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I’m so sorry you have a cold! I hope it will pass soon. *healing vibes* I’m sorry the therapy didn’t work out as well as you had hoped. 🙁 If at all possible, don’t give up. You are in a tough spot so it isn’t the easiest thing in the world by far but keep moving. You deserve all the help and happiness life has to offer even if the path to get there is rather bumpy. Keep trying. If something is a constant source of stress and it is at all possible to do so, leave it behind. Use all of your energy to get you through your days with your head held high and finding joy where you can. The frustration can be daunting. Let yourself feel it and then let it pass you by. I know how awful it can feel when you are dealing with something so big and long-lasting and the people you go to for help are, to put it charitably, less than helpful. It can be a draining and lonesome position to be in that makes you just want to throw your hands up and quit trying. I wish you well on your journey. I don’t know what the future holds but I do know you deserve to find peace in your life.
My mother-in-law is continuing to do well. She has had a lot of appointments and has been doing some physical therapy. Everything seems to still be going well so that is nice.
I had an endoscopy done the other day and now have confirmation that I have a hiatal hernia and inflammation. Biopsies were taken and I should be getting the results in about 10 days or so. They want to rule out whether or not I have Barrett’s esophagus. So that will be interesting.
The week started out rather rough for me because my husband may have had a mild heart attack or the very least had some type of heart “episode.” He was at work and I found out details after the fact. We’ve had some trouble getting him in to a cardiologist so he sees our primary tomorrow in order to get a referral and hopefully he can see the cardiologist very soon. Fingers crossed! In the meantime, I have him taking Bayer and am watching his symptoms like a hawk.
So not super fun but on we go. I hope your cold is easing up! *some more healing vibes*
Hi Shonda!
Oof, I hear ya. The comments some people make, even if they are “well-intentioned”, can be . . .not very helpful. I hope you can find someone that you feel respected by and with whom you can feel comfortable and relaxed. I keep meaning to go back to a therapist I was seeing last year. Especially now that I have the frustration of unhelpful doctors in the mix. I hope you can find someone who has some familiarity with chronic illness. It’s odd how Depression, Anxiety, and other illnesses that therapists are familiar with can be chronic, yet they might not be able to wrap their heads around other chronic forms of illness. Go figure.
I do think 23andMe is interesting. Geneticgenie.com can do an analysis of your 23andMe data and can put together a chart that is easy to understand. It does a methylation chart and a detox chart. It lists a certain number of genes and they use a color code of green, yellow, and red to indicate the level of potential issue. It helped me find my MTHFR info. I couldn’t find it on 23andMe but Geneticgenie made it nice and simple. As for info from 23andMe itself, I am still poking around trying to figure out exactly how much information I can get out of it. There is plenty of raw data to work with and they list a number of conditions to check your risk as well as carrier status. That can be helpful if any of those conditions are relevant to you. I have suspected that I have heart issues and it turns out those are the things that I have a highest risk for. My husband has a family history of cancer and has himself had two cancer scares this year alone and 23andMe listed that as his tops concerns as well. In the 23andMe community, I forget the exact title for the post but someone had been doing a study about how certain gene mutations seem to show up more often in women who have miscarriages. It’s been a little while since I looked at it but I believe my husband has the gene involved with that and his mother had multiple miscarriages so that matches up. It’s up to you if and when you want to try 23andMe but I think it can be helpful at some point at the very least.
*spoonie hugs*
–JenHi Shonda!
My MIL is doing well. Each day is better than the last. I haven’t learned much about the family yet to try to piece together an EDS picture but I am fully convinced now that my husband has it. He has stretchy skin, paper scarring, poor wound healing, and using Dr. Tinkle’s book about Joint Hypermobility has helped me pinpoint some other symptoms of his. When he was younger, he could stretch his arm behind his head to the point that his left elbow could touch his right shoulder. In one of Dr. Diana’s videos, she mentions pulling on the arm and seeing a little dip in the shoulder area. My husband’s left shoulder does that. His ribs/sternum crack very loudly when he stretches his arms above his head, his ankles bend outward, he tries to pop his knee by twisting it sideways, he had Osgood Sclatter’s, he could sit in the W shape, he could raise his feet near his head, he could pull on his knees to create the floating kneecap thing, he has sleep apnea even though he has never been overweight in his life, and the IT band in his left leg is solid as a rock from being super irritated. His legs turn outward and his left leg ends up twisting so much that his foot will point to the side instead of in front of him and he won’t even be aware of it. His IT band was trying so hard to get his leg back in position that it is now a big tight, painful mess. It was hurting him so bad last year that he couldn’t even walk. I’ve found that his ribs and shoulders also seem to collapse in on themselves when sleeping like mine do. Having pictures to point to and watching some videos on Youtube helped him remember a lot of things that he could do. He isn’t too badly affected as far as pain and weakness goes just yet. I’m hoping to get the diagnosis process started for him soon so that everything else can get checked out. Especially his heart. Sleep apnea and EDS can be rough on the heart.
Thanks for the tips about optometrists! I have never been to one in my life and I am really curious to see what they think about my floaters. I’ve had them since I was little but there has been an increase in the past 10 years. If I look at a white surface, I will see sooooo many floaters. There is one that has always been in the middle of my vision and there have been a couple days where it will line up with my line of sight perfectly so it would cover whatever I was trying to read. I ended up reading with peripheral vision which is an odd experience. Thank goodness that is not it’s standard position.
I was having a decent couple of days and I was curious if a pattern would hold true. It seems like it might be. Over the past months, I have noticed that I might feel okay-ish for 3 days to under a week. Enough so that it is dramatically noticeable of “Oh! I can actually get up and walk without too much trouble. I’m only feeling a little pain instead of lots of it. My balance is okay too” and then it inevitably would fade and the symptoms would return. Starting yesterday, pain and fatigue started creeping back in. I’m curious to see if the propranolol will change anything about the intensity of the returning symptoms. It’s too soon to tell just yet.
Oh! And I got my 23andMe results! I have to poke around a bit but I do have a potential mutation in an MTHFR gene so I’m intrigued to see where that may lead. Lots of work to do! 😀
I hope everything is going well in your neck of the woods!
—JenHi Barbara!
Yes, the appointment was frustrating indeed. It helps to know that it isn’t just my same old bad luck with people and is unfortunately a shared and common experience among EDSers and other chronically ill/zebra folks. It breaks my heart to think of all the people out there who desperately want help but get slapped down. It is beyond ridiculous that there are not more safeguards in place to act as patient advocates. A doctor is just a person with all of the flaws that that entails. Some will be great while others are not. A doctor’s word does not change reality to suit their views. A doctor can be wrong. A doctor might be well-intentioned but lacking information. A doctor can be arrogant and have a god complex. They can be so many things. Yet what options are left for patients? To simply sit there and not ask any questions? No thank you. Not for me. But all of us can be the pioneers. We can be the ones who fight in order to make it easier for the people who come after us. No one should be made to suffer alone. I will not accept that as long as I have a breath left in my zebra body.
Hi Shonda!
The flights were okay. I had a bit of the typical ear pressure but nothing too bad. I haven’t been on a plane in years so I wasn’t sure how it would go. Oddly enough, I had a lot of trouble with elevators. I could feel them coming. I would get a weird pressure/pulling sensation inside of me & felt really woozy. Simply from the elevator arriving at the floor I was on. Sometimes the woozy feeling was stronger outside the elevator than it was inside. Very odd.
Snuggly kitties are the best. I love ’em.
My appointment. My oh my, that appointment. It started out well enough but I have been very frustrated ever since. He was polite & seemed interested in my symptoms. He asked a lot of questions & I had a lot of the symptoms he mentioned. I felt good about all of it in the beginning but I started to feel uneasy as the appointment went on. By the end, I was not happy at all. Even though I have so many symptoms, he said he is not seeing an autonomic problem. Okay, maybe I don’t have something typical or obvious and maybe not typical POTS or something but there is absolutely something wrong. I was expecting the neurological part of the exam to be normal & it was. He said I responded almost “above normal for someone so deconditioned & dealing with all that I am.” I did the walking up & down the hallway thing. I was having a good day & was able to do more than I can on my off days. I was still shaky & wobbly and, after a brief jog that I was AMAZED I could do, I was very weak & my tremor was dramatically worse. Apparently none of that meant anything to the doctor though.
I even showed the guy a picture of my foot when it turns purple-grey. I had my hand in the photo as a baseline to be compared to & it is so obvious. The nurse was great. She was very caring & took great interest in my symptoms & was shocked that my foot looked so bad in the photo. The doctor, however, glanced at it & said “Huh, yeah look at that.” I showed him my MRIs (I have to get another copy of the disc because he didn’t give it back) & he spent less than 5 seconds looking at it & said it was “normal.” Although I have symptoms that fit hydrocephalus, cranial instability, and all of that stuff & even Barb from this forum noticed those things when she was kind enough to look at the MRIs for me.
I said that I have exercise intolerance, heat/cold intolerance, that my heart rate goes very high with little activity, etc. & his answer was that I need to start an intense exercise regimen that would have me running on treadmills in a month & keeping me at my max cardio heart rate for at least half an hour every day of the week. Um…did he pay attention to the intolerance stuff & the fact that I have terrible joint pain? Doing that kind of exercise isn’t really an option for me.
He did not believe that I have any autonomic or neurological issues but was willing to put me through another Tilt Table & some other type of autonomic testing. I’m uncertain if I even want to do that now because in the summary paperwork he gave me at the end of the appointment he listed his main impressions. What was his most likely diagnosis for me? Somatic Hypervigilance. Meaning I am doing it to myself. That it is anxiety & that I am just being a hypochondriac. One thing I can try to cling to is that he did mention EDS in the paperwork. He said I had “joint laxity & hyperextensibility consistent with Ehlers-Danlos Syndrome.” So I have that on paper now but it is unfortunately buried in the paragraphs & not at all listed in his concerns/diagnoses.
He gave me propranolol which is going well so far. I have noticed that my tremor is less. I have actually gotten some sleep which is helpful as well.
I was so frustrated after dealing with all of that. Especially since it takes driving over 6 hours total & dealing with so much pain in order just to meet with that doctor. I went from extremely angry to very sad & worn out, crying, back to angry, & so on. It’s one thing for a diagnosis to take time & be a long process of tiny steps. What gets me is when I feel like something is so obvious & yet I am treated like I am insane & making it all up. I know the doctor doesn’t know me at all so he has no idea that I do not try to get attention, I don’t talk myself into a tizzy, I don’t over-react or play things up or anything of the sort. My entire life, I have always been blown off & treated like the exact opposite of the type of person I really am. If I ask for help, it is because I have exhausted all other avenues not because I want attention. If I bring in a list of symptoms to the doctor, I am expecting them to use their professional skill to help decide what is important & not use it as “proof” that I am “looking for a problem.” That’s their job, isn’t it? Don’t they always say “Tell your doctor everything because you don’t know what may be important & it could be info that will point them in the right direction”? I didn’t even list everything & I don’t list every little everyday thing but the things that are obviously symptoms.
And he obviously must not have a proper understanding of EDS to dismissively refer to “party tricks,” acknowledge that I have it, then not take that into account in my diagnosis. There seemed to be a strong disconnect. To give him the benefit of the doubt, he seemed like maybe he can’t process more than one thing at a time so maybe he was just too confused. I will not trust him to lead the way but maybe he might follow guidance from another doctor who tells him exactly what to do. I don’t know. I’m not exactly jumping at the chance to continue dealing with him.
My husband says he doesn’t want to deal with these doctors anymore & only wants to look at the top-of-the-top specialists. He wants to try to get me in with Dr. Tinkle. I see a geneticist in Nov. who I have read about in the Inspire forums & a few people have experience with her, said she diagnoses EDS, is good, etc. Fingers crossed!! The journey continues.
Hi Lab-Scientist-Lady!
I’m sorry for the delay in getting back to you. Goodness gracious it has been a crazy week! Well, as I had mentioned before, my mother-in-law had brain hemorrhages. My husband decided to fly out to Maryland to see her. We had bought his ticket and were prepping for him to leave Monday morning. The Saturday evening prior to that I ended up having a massive anxiety attack. It came on so suddenly. I was reading a book and then BOOM convulsions, nausea, vomiting, the works. I became terribly afraid of what would happen to me if I had to deal with that all by myself for a week so I bit the bullet and decided to go to Maryland with my husband. Of course, just a handful of hours after we had purchased his ticket, the price for my ticket was more than double! Ack! After that I had to take a second dose of Ativan (since the first one had been thrown up already) and melatonin to attempt to knock me out or at least relax my muscles enough to calm down the attack. I was finally able to get a little rest. The Sunday before the trip was spent trying to find ways for my cats to have enough food and water because we were not able to have someone come in and check on them each day. I was terrified that my 18 year old cat would die from the stress of being alone. Fortunately, she made it through okay!! Phew!!
The trip to Maryland was bittersweet. The flying and dealing with various people and nurses went well (take that social anxiety!) but my mother-in-law had definitely suffered some damage from her brain hemorrhages. She seemed eerily similar to the dementia I had before I started the Zyrtec/Zantac routine. She couldn’t connect words, remember the names of things, she would go in and out of lucidity, etc. When describing who I was to a nurse, instead of saying “This is my son’s wife” she called me “This is my husband’s daughter.” She called a chair a “table” and lots of stuff like that that clearly shows her brain is not communicating properly. She improved each day and you could tell when she was starting to fade again because she would start to get tired and confused. If she was fully awake and alert, she functioned much better. She developed several clots in her leg that leg to a procedure to put a filter in a vein to prevent the clots from reaching her heart, lungs, or brain. She passed out one day after trying to stand up and I noticed that she was having POTS-like symptoms. Her BP remained on the lower end of good and would raise when she sat up and then drop when she stood. Before she fainted, she had just taken off compression stockings and got up off of her hospital bed quickly so I think it was all just a POTS-like BP drop. Her tests, physical therapy, and echocardiogram all looked good so there was no evidence of anything else wrong in that regard. The doctors and nurses are very very hopeful that she will make a possibly 100% recovery. I think blood “just” pooled on her brain instead of causing any actual damage to tissue. Her stay in the hospital kept getting prolonged day after day so I unfortunately wasn’t able to see her actually leave the hospital but she is home now. I took diligent notes when my father-in-law was absent so he could have the peace of mind that all info was covered and he knew what was going on. I stayed by my mother-in-law’s side the entire time save for when I was pulled away to get food or forced to go back to the hotel to sleep. I had a bad insomnia night that caused me to be up for over 30 hours straight only to follow by a 14 hour pass-out session the next night.
My husband and I flew back home on Friday and I am insanely wiped out. I am in so much pain and so tired. I’m mainly relieved that my cats are okay. I would be devastated beyond belief if something had happened to them. Now I am simply trying to get whatever recovery time I can before another painful 3 hour drive to and from St. Louis for my appointment Monday morning. Hopefully the neurologist will be nice and helpful. And fingers and toes crossed that the 6 hour total drive won’t cause weeks of pain like the last one did. Yeesh.
I’m sorry you haven’t been feeling well. 🙁 I do indeed get absolutely awful headaches. There is the constant everyday types, then flashes of intense ones or annoying ones, the migraines that last awhile, the ice-pick ones that feel like they are stabbing through my eye or temple, and some other types.
I can crave salt too. I can bounce between craving salt and craving sugar. I try to be really careful because I will feel super sick if I have too much of either one.
I hope your upcoming endocrinologist appointment will go well! I’ll be thinking of you and sending good doctor vibes your way!
I want to smack that rheumatologist for treating you so badly! Argh! What a jerk. I haven’t been to an orthopedic doc yet. I am hoping to try to see a rheumatologist soon and see if the one here in town knows anything about EDS or if they are willing to learn at all. I’m still trying to learn about all of the different people I have to see. There’s the geneticist, gastroenterologist, neurologist, cardiologist, rheumatologist, orthopedic docs, eye doctor. . . uh depending on what else is going on maybe an endocrinologist? Are there others? Oh maybe pain specialists and physical therapy? So far I have only seen the gastro. I don’t count the first neuro because that guy was terrible so I would rather pretend he doesn’t even exist. I see another neuro in about a week and a half and he has a lot of experience with autonomic dysfunction and some neuromuscular stuff so I am really hoping to get some more info nailed down. The joint and muscle pain I have been having has been so much worse lately so I probably need to get in to a rheumatologist before I see the geneticist in November. I have a follow up with my primary in October so I can at least address this stuff with her then if nothing else. My lower back hurts all the time and makes everything difficult. Walking, sleeping, even sitting. I put the head of my bed up on risers to help with heartburn but I’m trying to figure out if it might be irritating my back a little. My neck has finally eased up a little bit after days of awful joint pain that felt like my skull and spine were scraping each other. Now I am back to my regular day-to-day headache and neck pain. Everything hurts and seems intent on staying that way. *shakes fist at body* 😉
Thank you for the concern for my mother-in-law. She is in surgery right now to essentially “glue the leak shut” that was causing blood to pool on her brain. Everyone seems confident so hopefully everything will go well and she will be okay. Whenever my husband had left me home alone (either for deployments or when seeing his family on his own because it was easier), I would have a full blown anxiety attack about feeling like I was in over my head and couldn’t take care of things. When my husband had to go for deployments that lasted for months, I actually moved back in with my parents for the duration of the deployments because the stress of being alone was too unbearable. I am fiercely independent so that is not fun to deal with. Now, the whole thing would be even scarier because I have even less capability than I did before. At least now I am on Zoloft and have some in-the-moment anxiety meds to turn to if I am desperate. I can’t imagine how badly an anxiety attack might hit me now that all of this other stuff has kicked up. *shudder* I hope I don’t have to find out.
The 3 hour trip (6 hours total) did a number on me. I was in so much pain and I have been wiped out energy-wise ever since. My neck and lower back are still mad at me. I look forward to my upcoming appointments but I DO NOT look forward to the actual traveling part.
I use Oval 8 finger splints for my fingers but I haven’t found anything yet for my thumbs. I like the design for thumb splints from Silver Ring Splints but they are obviously not a convenient, cheap option. All other braces/splints I have found always immobilize the thumb and wrist which is good for the really painful days but I want to still have full use of my hands and just prevent hyperextension only. The best thing I have found so far is to use those skinny banadages/medical tape type things and wrap my hands up like I was going in for a boxing match. If I play with it just right, I can stabilize the joint while still having full use of everything. I wrap it around the thumb and loop around the palm a couple times and usually one finger to help hold the bandage in place. It can work really well until my skin gets irritated that it has a bandage on it. My thumbs have been driving me up the wall because they are not stable at all and anything I try to hold on to bends all of my fingers and thumbs backwards.
I hope some of that made sense. My brain is super stressed because my mother-in-law had a stroke today. I have no idea what condition she is in and I know at the very least that my husband will want to go see her soon. I would like to be able to go myself but I have had to miss out on trips in the past due to issues and I am in worse shape now than I was then. His family is over 1000 miles away so it is not a “pop in real quick” type of trip. And if he goes on his own, I have to be all alone for an unknown length of time. It is such a downer that my medical issues make this stuff so much more complicated. I would love to be able to show my support and be there for the family but I don’t know if I can. She is a wonderful lady and, even though I haven’t spent a lot of time with her, she is like a loving mother that my own mother never was/is for me. She is only in her 50s so she is still really young and I suspect it has to do with major surgery she had earlier this year to remove part of her digestive tract. She had a big blood clot develop after that and was on blood thinners for a little while. Fingers crossed she will recover and be okay.
I am so sorry for all of the pain and fear that comes with these health problems. I completely understand having one thing after another slip away and yet, at the same time, it feels so sudden. I want to smack those terrible doctors of yours. Ugh!!
I saw my gastroenterologist for the first time yesterday and it went well though didn’t cover much. I am to have an endoscopy done to check what condition my esophagus is in after all of these years of acid problems. I said that I have Ehlers-Danlos, Dysautonomia, and still have to rule out Multiple Sclerosis and Mitochondrial Myopathy. He said Ehlers-Danlos sounded familiar and he asked what it was exactly. He actually wanted to know! I think it helped that I can bend my pinky finger so far back so it’s obvious that something is not right and I was also in extreme pain yesterday in a number of joints. My lower back and the base of my skull have been giving me a lot of problems lately to the point that, for the first time ever, I considered sitting in a wheelchair when my husband and I stopped at some stores after the appointment. During the appointment, I was in so much pain. My head/neck was killing me and my lower back made moving difficult. My doctor. Dr. Ansari of Fenton, MO for anyone who may read this who is near there, was incredibly nice. He saw the pain I was in and how weak and shaky I was and seemed very concerned and considerate as I slowly climbed on to the medical table. I was shaking as I was getting off the table and he even helped support me as I got down. Maybe other doctors or people are like that but little things like that are so alien to me. It completely blows my mind when someone is actually decent. I don’t know if we were short on time (I did arrive late despite all efforts to get there on time) or if my doctor is waiting until after the endoscopy to address other issues but all of the other stuff wasn’t really addressed in this appointment. He seemed satisfied that Zantac was helpful so far and did say he wants to keep an eye on how it goes because I may need to try out another PPI. He was reluctant to have me travel 3 hours just for him to do an endoscopy but I’m seriously tempted to have him do it instead of someone closer. It is hard to find people to trust and I would rather keep things as limited as possible to avoid a “too many cooks in the kitchen” kind of thing. I would hate it if I have an endoscopy done by someone else and then Dr. Ansari says it didn’t quite check everything that he wanted to see. His office (with a receptionist who was absolutely atrocious and disrespectful) had trouble with my insurance so now I have to work that out on my own before I can schedule the endoscopy. At least my husband can be a huge help with that. Ever since I was little, I absolutely hate phone calls with a fiery passion. And if things get messy, I really hate having to work with a bunch of different people to try to get things straightened out. My husband has always been helpful in that regard with handling phone calls for me and, as he gets more and more protective as my suffering increases, he will “strap on his Staff Sergeant boots” and is willing to fight hard to make sure I get the care I need. I don’t know what I would be able to do if he didn’t help me with so much. He is not in the military anymore but his past deployments really drive home the “I can’t take care of myself!” feeling. Being alone for one week or even a weekend can be scary to me because I have no one else. He also had two separate cancer scares this year alone so the idea that illness or random accidents could affect his life or ability to get around . . . is not fun. The intimidation of an uncertain future is so thoroughly life-changing.
I too stumbled across EDS by accident. I was doing an image search for finger splints because I was so desperate to find some way to support my fingers and stop the pain. In the results was a picture of the Beighton scale. I thought ‘Hey, wait a minute, I do that!” Digging into that I immediately see the name Ehlers-Danlos Syndrome and things start making sense. I then find Dr. Diana and I rapidly fall into a whole new world where everything makes so much sense and all of these random things fit together. Symptoms that I had no idea happened for anyone else. Things that actually have official names. It’s insane. Checking Dr. Diana’s symptom list, my goodness I have a lot of that. Over 100 of them I think. I have to check again and count it out but I definitely have so many of them.
Hopefully I can get the endoscopy thing straightened out soon and I have a neurologist appointment in a couple weeks. At the rate that my joint pain is going, I may have to squeeze a rheumatologist in there so I can find out exactly what condition my joints are in.
As for my own allergies, I think I am allergic to all kinds of things including cats but cats don’t seem to be a severe one. If they have recently been licking themselves and I pet them or hold them near my face, my eyes can start to burn and water and my skin can feel a little irritated. It’s nothing compared to my outdoor allergies or when compared to my older brother’s reaction to cats. Some cats seem worse for him than others but it sets off his asthma in a really bad way. He had those shots in his arm to test allergic reaction and his skin looked like mine where it gets all red and gets huge welts. My brother lives with his girlfriend who has a cat and two rabbits. He seems to do a little better with the rabbits but the cat does a number on him. Before my little brother moved to Texas, he was still living with my parents and had gotten two cats. He left them there when he moved and whenever my older brother has gone to my parents house he gets terrible allergies. He has a horrible time breathing and even ended up sitting outside of the house sometimes as well as wearing a breathing mask indoors to see if that would help. My parents kept trying to get him to hold one of the cats even though his reaction is obvious. They. . . are not helpful. We had dogs growing up and he never seemed to have an obvious issue them.
I LOVE animals so I my heart needs to have pets. They have been the only consistently pleasant thing I have. My husband and I used to have fish but we had to move enough times that it was just too heartbreaking to lose the fish each time and my body couldn’t keep up with taking care of the tanks. I injured my wrist from lifting and turning a bucket of water and the pain was excruciating. For a few weeks after, the pain was intense and I couldn’t use my arm for anything. It hurt no matter what position I put it in and I was wearing a brace to stabilize it. Even now, a handful of years later, I get pain in that wrist. I can’t turn my hands palm up without it feeling like that wrist strains and pulls. There is something in the wrist that also pops and moves, I think. Oddly enough, that wrist is acting up right now. Ouch. I recently saw a video of a wrist subluxation and that is something my wrist has done a handful of times. I have also had what I now believe are subluxations in both sides of my hip but mainly the right side, my wrists, ankles, a clavicle, my sternum, and maybe my knees and a shoulder. Oh and one time it felt like it in my neck. That was scary. I don’t know if any of my family members have had that at all.
I definitely want to see a cardiologist. I tried seeing a rheumatologist recently but was told not to bother since that doctor was leaving that month and I should wait for the new one. That new doctor should be there now but I haven’t tried setting up an appointment yet. I feel a little more able to handle appointments now after taking Dr. Driscoll’s recommended Zantac/Zyrtec combo. I was feeling out of my mind delusional for a bit. It didn’t feel like brain fog. It felt like dementia. It was terrible. But a few weeks of the meds seems to have brought some clarity back. Yay! I hope to get official answers soon. I am so tired of not knowing. Oh! And my husband and I just completed our 23andMe kits so fingers crossed I will get something useful out of that in the coming months.
I actually suspect my husband may have EDS as well. His knees seem to hyperextend just a teensy bit, his skin is hyperflexible and stretchy, he has some paper scarring, and a mild case of scoliosis. He pops his sternum all the time and has a pretty bad issue with the IT band of his left leg. His hip sits pointing outward and his feet point outward so his IT band is irritated and is as hard as a rock. When he was still in the military (he got out last fall), he had no choice but to see a doctor about it. He was basically crippled. He had so much pain and couldn’t tolerate walking or even standing for long. He saw a physical therapist once and got a steroid shot which helped him a lot. He still has issues with it and I am trying to teach him how to be mindful of where his joints are. He also has a nasty case of sleep apnea which is not weight-related. I suspect that joint laxity may have something to do with it because his head just collapses in on his neck and his ribs seem to collapse a bit when he lays on his side. If I hold his jaw to open his neck or if I lift his shoulder to open up his ribs, he immediately breathes better. He had a cancer scare earlier this year (well two separate ones actually) and the areas where his skin biopsies were taken seemed to not heal well. The scars seemed to open a bit and remained very dark and purple. His father has sleep apnea and one of his uncles’ from his father’s side has knees that definitely bend too far back.
I want answers! *shakes fist at nothing in particular* A weird thing is that as a kid, besides always knowing something was wrong, I had this feeling that I wasn’t going to make it past 30 or at the very least there would be some big medical thing going on then. Well, I turned 30 and all hell broke loose and I have an uncertain future. I joke around and say “Ha! I knew it! You all said I was crazy but I was right! Bwahahaha!”
Hello Lab-Scientist-Lady!
I suspect that my mom has EDS. She has really soft skin, wide paper scarring, was ‘clumsy’ a lot (was the ‘clumsy’ one among her siblings), & a lot gastrointestinal issues & what I suspect are autonomic issues. I think I remember a picture of her when she was younger & her knees looked like they were hyperextending even though she was simply standing. She also has some resistance to pain meds like I do. I mainly have to go on my own observations & memories because trying to get a straight answer out of her is almost impossible & she doesn’t talk to her family much. She has 6 brothers & sisters & I have no idea if any of them could have symptoms or not. I’ve told my mom about all of this and she blows it off. Her parents died when I was young and I don’t remember meeting them. All I know about them is that my grandmother had uterine cancer that had metastasized everywhere and my grandfather had more than one heart attack in his life. A heart attack is ultimately what took him just a few months after my grandmother passed. They were both 67 I believe.
I got a hand tremor from my dad and he has Terry’s nails like I do. He also has worsening anxiety to the point of beginning to have attacks starting in his 50s. I know his feet have felt numb for a few years. He’s never asked a doctor about it so no helpful info there. He also had a tendon rupture or whatever it is when the bicep becomes separated from the arm at the elbow. He has had a couple surgeries on it and still has a lot of pain. He injured his knee when he was in his teens and eventually had surgery because there was no cartilage left. Like my mom, he also does not have much contact with family so I have no idea what other symptoms might be floating around there. I believe both of my parents suffer from Depression and I think my mom may have some other mental issue going on but I don’t know what it is. I only met my dad’s dad once when he was on his deathbed and I only saw his mom a few times. I’m not sure what ages they were when they passed away almost 20 years ago. I know my grandfather died from complications from AIDS I believe and I think my grandmother had all kinds of stuff going on. I think there was emphysema and some other lung thing and I want to say another condition or two but I have no idea.
My family and I don’t talk much. I have texted here and there with my mom but I haven’t seen my parents in almost 3 years. And that was only because my husband’s grandfather died and we were attending his funeral. Since our families are from roughly the same area, I have to also do a courtesy visit with my parents to avoid any issues from not seeing them. So getting any info let alone a detailed history is probably not in the cards for me. Oh well.
I have an older brother and a younger brother who both have some health stuff going on. My older brother was born with a Ventricular Septal Defect so he has a hole in between the ventricles in his heart. If you listen to his heart, you don’t hear a “thump thump” and instead hear the sound of a half-empty water bottle, held sideways, sloshing back and forth. He also has pretty strong asthma and is allergic to soooo many things. He has issues with temperature change, his hands can become extremely swollen in the cold, and he wants to be in the cold all the time. Everything feels too hot to him. He had horrific “growing pain” in his legs that would cause him to scream and cry at night. He has stretch marks from growing like I do and I believe he also has some sort of gastrointestinal issues. He mainly seems to deal with flatulence that is like something died in him. He had a nasty case of Bursitis. The lump on his elbow was huge and the bruise covered the entire inner upper arm. I’m not sure if he has any hypermobility. Like my parents, he doesn’t really give straight answers so I can’t pinpoint exactly what is going on and can only rely on what I have observed.
My little brother seems to be the most like me. He has terrible joint pain and very obvious gastrointestinal issues. To the point where even one bite of ham or bacon will put him in the fetal position on the floor. He has a curve in his spine that is supposedly just millimeters shy of being official scoliosis so I just say he has scoliosis. He has terrible lower back pain like I do. He and I both get these odd little patches on our skin where everything looks normal but it becomes extremely over-sensitive and painful to the touch. It eventually just fades away on its own. He apparently asked a bunch of his friends and they had no idea what he was talking about. He asked me and even said “Oh dear god, please tell me you know what I’m talking about.” I’m one of the few people who has ever understood much of what he deals with. I’m not sure if he is hypermobile. He has ADD-like symptoms and I found Dr. Driscoll’s video about mental issues very interesting because she mentioned Bipolar presentation. I have been worried about my brother for several years because he has shown self-destructive behavior, has attempted suicide more than once, seems to have mania stages where “everything is wonderful and he wants to do this thing and that thing and it will all be great” and then he will have depressive stages where everything is awful, life isn’t worth living, etc. He took a bunch of pills last year and was brought to the hospital. The docs gave him charcoal stuff to absorb it, talked to him for no more than an hour and sent him on his way. He had seizures while on the bed and acted like nothing had happened at all when he woke up. Just popped up and was ready to go back home and didn’t understand why anyone would be upset. He has had terrible dehydration that caused his body to lock up & his hands looked like claws. Earlier this year where he was blacking out & falling in public. He was supposed to have a TTT but just ignored it. He said the saline IV he was on in the hospital was the best he has ever felt.
I’m glad you were able to eat out and sit for a little bit. Yay! I’m sorry the appointment was difficult. 🙁 I’m glad that you could get a break from it instead of suffering through a longer one though. I too have lived in a number of places. I grew up on military bases so we bounced around a bit. Hawaii, Virginia, California, Maryland, and now I live with my husband and 3 adorable cats in Missouri. My little brother recently moved to Texas. Just outside of Austin, I believe. He loves it there and says everyone is so nice. 🙂
Oh my word, I completely understand the ‘Well, all that living I was hoping to do as I got older isn’t going to work out as well as I hoped’ feeling. That one can sting a little bit more than others. There can already be a sense of loss for the past and hope for the future can be so important to our ability to move forward. When that hope gets the rug pulled out from under it….well.. .suffice it to say that it can really suck. It can feel like a door is slammed in your face or that things that you didn’t even have are being taken away from you. It can be very daunting and hopefully it can progress to the point where you just change what you were hoping for in the first place. What I hoped for isn’t really an option so now I look for what can be done. There can still be moments of mourning for the ‘things that might have been’ but getting stuck there is a very dangerous thing. I have had to process the loss of so many things that it is pretty much a part of my day-to-day life. Another bad thing happens and I go “Well, that sucks. Guess I’ll fold it into the mix and on I go.” I may get beaten down sometimes but I won’t stop. And you are here. That makes you a survivor. A true fighter and warrior. You can be scared, broken, and drained but you have nothing but a long list of victories behind you (even if they don’t feel like it). There are things you can’t have or may not have but your experiences are all victories in their own way because you are still here. They didn’t break you. You survived to live another day and have given yourself the chance to find joy in new things. Even in the darkest of days, that can never be taken from you.
I’m right there with you. My anxiety had gotten in the way of working in the past but now my body couldn’t handle it either. I have trouble walking to the point that sometimes I just can’t do it at all. I can’t carry or lift things the way I used to. I can’t wash dishes anymore. I even need help taking showers. I can’t even put my own shoes on anymore. Every day seems to add new things to the list of things I cannot do. My problematic past taught me to embrace every little thing I possibly can because sometimes the little things are all you have. We have no control over what happens to us but we can control how we respond to it. I haven’t had many of the things that so many people take for granted and I know there is plenty that I will never have and so I take a “screw it” response. I’ll take what I can get, surround myself with stuff that makes me laugh or smile, try to live as healthy a life as I can muster to preserve what I have, and be there for others in their times of need. I might not be able to do much but I want to be awesome at what I’ve got. Maybe my future holds an endless line of struggles and/or losses but, screw it, I’ll just keep adapting.
It seems a response I tried to post last night did not go through so I will try to do a brief recap. Lab-Scientist-Lady, while you and I have not had the exact same experiences, I shoulder that burden with you. I have been to the darkest places possible even before my body deteriorated. I know what it feels like to be so tired, so exhausted from simple survival. Moving from one moment to the next can feel like it is just too much to take. The mental, emotional, and physical toll can be overwhelming. My depression was that strong and my panic attacks were/are also that strong. For most people, panic attacks seem to not last very long whereas mine can remain at full intensity for several hours and then remain at a moderate level for days. There is no relief. There is physical pain, intense nausea and vomiting, my entire body clenches and shakes, my skin becomes overly sensitive to any stimuli resulting in more nausea and discomfort, and so much more. ‘Discomfort’ doesn’t even begin to describe it. Everything is so bad that speaking and thinking are not possible. And I remain in that place for several hours when even a few seconds of it is torture. I broke down in tears last year when I started having a string of attacks and even ended up going to the ER 3 separate times in a desperate search for help. The emotional pain was worse than what my body was going through. I was just so desperate and tired of feeling that way. The depression and the anxiety are just so hard to go through and it drains everything you have. I was so tired. So exhausted. So fed up with feeling such an intense level of suffering. It can be soul-crushing. It can take so much just to survive from one moment to the next. You just want it to end. You just want to not have to feel it anymore. The idea of going through even one more moment of it can be overwhelmingly painful. I might not be able to make it better for you but, for any moments when it might actually count for something, I understand. I truly, truly understand. *hugs*
I am so sorry for your struggles! EDS is quite the evil mastermind controlling so many things from behind the scenes and causing so much havoc. It still amazes me how these conditions seem to just slip through the cracks and not receive the amount of attention they deserve. Not having a child or ever attempting to have one, I can’t imagine how difficult and painful infertility and miscarriages must be. My heart goes out to you and every single person who has ever suffered through something so difficult. *hug*
