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My hands started going numb while sleeping about 5 or 6 years ago. Recently the numbness spread from just my hands to my entire arm. I think it’s (for me) from sleeping on my side, and partially related to osteoarthritis in my shoulders. I try to stay sleeping flat on my back. It helps with both the numbness/pain in my arms and hands, and also with my neck and back pain.
So.. I’ve started using the soft cervical collar most nights when I sleep. My CSF leak has waned again, which is awesome!
Had my MRI done, and now I have a dx of cervical and lumbar osteoarthritis, with degenerating discs putting pressure on my nerves and spinal cord, to go along with my dx of Joint Hypermobility Syndrome. I begged the office for a referral to a physical therapist, because I’m thinking that being taught how to position my body “correctly” at all times and how to exercise correctly are going to be crucial aspects in sustaining a good quality of life. Being only 30 years old, and reading that osteoarthritis is considered “early-onset” when it affects someone under the age of 50, is daunting in and of itself.
Aside from the cervical collar, I use a sacroiliac cushion on my desk chair, and wear a sacroiliac belt to work. I haven’t had the follow-up with my rheumatologist yet, so I can’t say for certain, but I’m speculating that my hip joint is more affected by osteoarthritis than my lumbar spine, based solely on the fact that wearing just the sacroiliac belt relieves my sciatic nerve pain just as well as wearing the Saunder’s all-back support brace.
I haven’t located an opthamologist to have my eyes tested as a prerequisite for starting the plaquenil treatment yet. I’m still debating; working midnights and having a flare of bursitis in my left shoulder have taken their toll on my research time. I am, however, incredibly tired of taking anti-inflammatory meds and feeling little to no improvement.
I will be sure to ask about Diamox at my appointment on the 28th, and let you know how that pans out for me.
I’m trying to have patience with my rheumy, and keeping in mind that he has studied and retained information about thousands of different patients and medical conditions, while I’ve really only studied my own body and its symptoms for the past 25 years. In that light, though, Dr. Diana, I have to agree with you on the “patients are the best minds to figure this out” front. Especially when it’s a condition that can cause such a wide variety of symptoms from patient to patient; I think it’s important for every person who is affected by this condition to speak up and seek out a diagnosis and have their individual case recorded – if not for researchers to use immediately, then for future generations to study and learn from.
The relationship between ASD and EDS is actually what led to me hearing about Ehler’s-Danlos and other connective tissue disorders in the first place! Obviously research is ongoing (which is true of just about any medical condition – that’s why medicine is called a “practice”) but I found some good information here: http://www.sciencedaily.com/releases/2014/10/141010154926.htm and also here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365276/
Then there’s this neurologist who is supposedly continuing research into the subject: http://corticalchauvinism.com/2013/08/12/ehlers-danlos-syndrome-and-autism/
I can only speak for myself, but based on my own personal experience I believe there is a high degree of credence to the theory that inflammation in the mother during pregnancy leads to the overgrowth of certain parts of the brain in the fetus that continues into infancy, and I don’t think it’s a coincidence that the area affected has been linked to both autism spectrum disorders and connective tissue disorders.
As for the other questions – pertaining to IQ and shared physical traits – I only have myself, my mother, and my sister to evaluate, but you may be onto something. My mother is highly intelligent in a non-traditional way (incredible empath, thumb so green it could produce it’s own chlorophyll) and was thought to be about 10-20 years younger than she actually was up until a couple years ago. I’m 30 and I’m regularly mistaken for a 19 year old; my sister is 6 years older than me and we’ve been asked multiple times if she’s my twin sister. I’d say we’re both above-average intelligence, and that we both exhibit some ASD traits as far as specialized areas of interest and poor social skills are concerned.
I only know one other person who has been dx’ed with EDS, and we’ve only texted, so I can’t vouch for her physical traits. I can say, though, that she is incredibly intelligent.
As to the postulation that we are commonly more anxious than neurotypicals…again, speaking only for myself, I’ve found that I’m less anxious when I’m in less pain, or in a really positive place mentally. It’s only when I start to feel as though my skin is made of wasps, or my body is trying to kill off my brain, that I start to get anxiety. Something about not feeling totally comfortable in my body makes me hyper-aware of what it’s feeling and everything else around me – that heightened awareness leads to my anxiety. Most of the time I’m really relaxed and easy-going.
Organization and perfectionism.. I just (humorously) attributed those traits to the fact that I’m a Virgo. Both definitely apply to me, though.
There’s also this blog you can check out: https://planetautismblog.wordpress.com/2014/09/11/connective-tissue-disorders-their-correlation-to-autism/ which was my first step in discovering EDS. Hope some of this long, rambling reply helps!
Definitely would be worthwhile for me! Two years ago, I knew nothing about what was wrong with me, and I was so focused on work that I didn’t have any time to look into any of it, so I just described it as “neck pain”. Now I know how far off that description is.
I’ve been much better in the month or so since I wore the soft collar for just a couple hours, but the leak has been coming back little by little. Today it’s back to the point of needing tissues at all times. So frustrating when you’re trying to draw and you have to stop every couple minutes to grab a tissue!
I believe it is a CSF leak, like you describe. When I watched your YouTube videos that was a HUGE symptom that stood out to me. I’ve been carrying tissues around with me everywhere for a couple years. At first I thought, “Oh, it’s allergies,” and I’d take a zyrtec and write it off. Then I’d think “Oh, it’s just cold out,” and blame it on the weather (I live in MI, weather is highly unpredictable here lol). Nothing I did made the clear liquid stop running, though. I read a news article about a man in the UK who’d had a runny nose for years, and doctors found a tiny hole in his nasal passage that was leaking CSF, and I freaked out a little about that haahaha.
But it’s not a coincidence that my runny nose is often accompanied by a full feeling in my head and will progress to an occipital headache after a couple weeks. My doctor hasn’t even looked into it, I’m sure. Before I saw him, I thought he was going to look into EDS and the diagnostic criteria for it, and boy was I wrong. It’s still another two weeks before I see him again. I’m staying hopeful that now he’s seen I don’t have lupus or rheumatoid arthritis, he’ll take me more seriously.
I have this issue with doctors (and many others) where I look like I’m 17, but I’m actually 31, so they see this young, healthy looking girl and think, “There’s no possible way she knows what she’s talking about, she’s a child.” It’s frustrating. I’m glad I have a couple weeks between now and my appointment so I can get my evidence together into a neat little folder and go in and hit him with some hard science. 🙂
I’ve been weighing the pros and cons of trying the Plaquenil. I got the prescription and the order for my eye exam in the mail the other day, and I just haven’t decided yet. I need to read more about it.
My last eye exam (a couple months back) had him telling me that my tear film evaporates faster than normal, my sclera doesn’t look especially thin, and that we need to keep tabs on my optic nerve because he sees some early signs of glaucoma (runs in the family, too). I already have astigmatism, and I already get diploplia – which I had no idea was a thing until I started talking to EDSers. I’ve also seen floaters since my teens, what I described as “being able to watch atoms dancing in the air around me”.
I’m now fairly convinced that the soft cervical collar didn’t cause my terrible reaction, but that I have an allergy to ranitidine. My CSF nose leak is coming back, and I know the headaches are soon to follow. I’m going to try the collar again tonight, and I stopped taking the zantac after I tried another one about a week after my “episode”, and had similar, but less severe, symptoms.
I also have a slight reaction to calcium supplements (like Tums), so now I just take an Immodium every day with my other lovely daily doses.
Aside from the plaquenil concerns, my main issue has been my sciatic nerve, on my left side. On and off for 4 years (since a car accident), and as of right now constant for the last 4 months. My MRI is in a couple weeks. Fingers crossed for me, please! My back s’port brace has been a huge help in my daily activities, but I’m fighting not to use it too much and potentially cause more damage/weaken the surrounding muscles and cause myself more pain.
I’m leaning toward giving the plaquenil a shot, just to see. What’s to lose, really? If I try it for a couple months and get no more relief than ibuprofen gives me (which is squat, basically), then I stop taking it. And if it helps, it helps, y’know?
I’m really wishing right now that I’d followed through with medical school. I’d be at the point of picking my area of study right now, and I would love to be part of the research into Ehler’s-Danlos and similar conditions. I wanted to be a cognitive neuroscientist, but life..gets in the way, sometimes. Ah well, one bite at a time!
I’ll keep updating as things progress. Keep on keeping on, everyone!
The lab results are in, and “everything is fine, except you’re vitamin D deficient.”
Why am I not surprised? Haha. Eek. So now I do have this question: if I have Raynaud’s phenomenon, and hypermobility joint syndrome, and all the symptoms of autoimmune conditions like lupus, but no evidence of lupus or rheumatoid in my blood work, this makes me a zebra, right?
Actually my question is whether being treated with an anti-malarial like Plaquenil, even without evidence of an autoimmune disorder in my blood work, will do anything to help me, or does it have the potential to worsen my symptoms? He still wants to start me on that medication. Ever since trying the soft cervical collar (which was scary and I thought I was going to die! but my occipital headaches have since gone away almost completely!) I’m a little wary of just jumping into any sort of treatment. Especially treatment by a doctor with no background in treating Ehler’s-Danlos or any other collagen disorders. (Okay so I really mean especially by a doctor whose only knowledge OF Ehlers-Danlos came from a 5 minute scanning of the wikipedia page on it – which I’ve read and isn’t exactly up to date.)
I’m sure a lot of these questions get asked in here, and I’m sure the information is on here if I dig around a little and look for it. I wanted to post an update and I do have a lot more research to do in the month before my next appointment with this doctor. I was just hoping to get some leads and pointed in the right direction as far as what treatments I should be talking to my doctor about and what my options are as far as anti-malarials and autoimmune medications.
I know that physical therapy to strengthen the muscles supporting my joints is a big part of treatment, but I do have to go get an MRI for my sciatic nerve pain (and toe numbness) before I let any physical therapist start fiddling with my body.
And I know the best thing for me to do would be to find a doctor in my area that’s at least familiar with Ehler’s-Danlos or even just collagen disorders, but believe me that was my first priority and the nearest one is over 600 miles away, so that option isn’t really an option for me unfortunately. I plan on printing out the research papers I’ve read and highlighting parts, along with possibly writing a paper on myself and my symptoms and why I believe I have Ehlers-Danlos, and then presenting my rheumatologist with all this information and scientific evidence and trying to (gently) let him know that this is something he might want to learn about.
If he continues to keep a closed-minded “I know it’s not that,” attitude, then I will have to fire him and find myself a different doctor with a better attitude.
Again, any help, tips, pointers in the right direction, or answers about what autoimmune medications would potentially do (help or hinder) would be greatly appreciated!
Keep on keeping on, everyone.
Oh, of course! You’re a beautiful, brilliant woman and the work you’ve put into understanding your own condition while simultaneously suffering from it is just amazing to me!
I’m sure they’ll be sending me to a geneticist to rule out differential diagnoses, as you said, but I just got a call from the rheumatologist’s office, and it looks like he’s getting familiar with EDS before my appointment. I’m finally (tentatively) getting my hopes up about being on the right track here.
I’ll definitely be keeping you posted, even (actually, especially!) if it turns out to be something different.
Again, thank you so much!
Thank you Barbara for your reply! I’m thinking about looking into the kind of collar you suggested, just as soon as I have some more pocket cash. That, or I’ll have to hold off and try to get my doctor to write it off as a medical expense and get my insurance to cover it.
Hi Dr. Diana! First off, thank you for your reply, and for everything you’ve done in your search for answers!
I just got back from my first appointment with a back pain/chronic pain doctor. They drew some blood to test for (and hopefully rule out) lupus and some other things. Unfortunately, he’s not knowledgeable about EDS or JHS, but he listened to a LOT of my symptoms and dx’ed me with poly-arthritis as a starting point. I have a follow-up in two weeks to go over blood test results, and I’m hoping maybe he’ll have done a little digging into the symptoms of EDS and it’s co-morbid conditions by that time. I’ll also have to ask about Diamox and possibly a sample just to see if it helps the headaches when I go back – I was trying not to overwhelm him with a ton of new stuff all at once.
I also got a referral to a rheumatologist. It’ll be another month before that appointment, and I’m closer to some answers, but it’s a step, so fingers crossed! (Not that I’m hoping for EDS, just that I’m desperate for a diagnosis and some relief.) If it comes down to it, I’ll drive myself the 600 miles to see the nearest geneticist who’s treated EDS patients already!
Again, thank you for all you’ve done, and for all the information and helpful tips that you’ve made available to the public! I finally feel like I’ve found an explanation for my wide array of symptoms, and that I’m not just “weaker than other people” (for most of my life I thought everyone felt this way!).
Keep on keeping on, ladies! 😉
