Pain management

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Most people living with Ehlers Danlos Syndrome or another connective tissue disorder will experience a lot of pain in their life, and often find that it can be very difficult to manage it. But seeing how I only have personal experience with Ehlers Danlos Syndrome, I’ll focus on that even though I think many things applies to other conditions as well, such as Marfan Syndrome.

The pain caused by Ehlers Danlos Syndrome is of a pretty complex nature as we tend to have many different types of pain. We may have chronic pain in both soft tissue and joints, sometimes of inflammatory nature, and with time many will develop nerve pain as well, we also tend to get a lot of acute pain from injuries like subluxations, dislocations and sprains, or from just being total klutzes and bumping into things or falling.

A part of the complexity in treating our pain lies in the different types of pain we experience, another part is the nature of Ehlers Danlos itself as we tend to react differently to painkillers and medicines in general, last I heard it was believed to be caused in the different structure of our connective tissue. Severe reactions and allergies are not uncommon, or extreme sensitivity to substances. Or we may be extremely resistant so to the level we need enough painkillers to knock out a whole kindergarten to just get our pain to a manageable level. We may also have a different metabolism when it comes to painkillers and anesthetics, it can be out of our system before you can say zebra, or it may take ages for a medicine to kick in, if it does at all. It also happens that people with Ehlers Danlos Syndrome get side effects that are very rare or even unheard of.

With all this in mind, it can be difficult to find a working pain management that both gives adequate relief and has little or no side effects for the patient. All types of painkillers also comes with their own issues. Acetaminophen/Paracetamol may put a strain on your liver with time, NSAID such as Ibuprofen, Naproxen, Diclofenac and so on can harm your stomach or you may even not tolerate them even to begin with due to already existing stomach issues or other issues that contraindicates the use of NSAID, opiates may with time cause such a high tolerance that you’ll need extreme doses to get adequate relief from it. Some antidepressants and anti seizure medicines may also be used to treat the pain, but that’s something I’m personally against as those medicines tends to have a list of side effects longer than the Old Testament and they can be worse to wean off than any opiate you can think of, plus they tend to mess with your entire body chemistry and be plagued by false advertising where it basically claims to be a magic cure it all tablet when it may in fact just be a way for big pharma to earn more from the sales of it.

When starting your pain management journey it’s likely that you’ll be put on Paracetamol and a NSAID type medicine or COX inhibitor that works similar to NSAID for pain but with less harmful effects on your stomach. You may also get to try a muscle relaxant if you’re having issues with tense muscles causing pain or if you have issues with spasms. Depending on your type(s) of pain, your doctor may also want to put you on an antidepressant or anti seizure medicine just to try and see if it works, decide for yourself whether to try it or not, do not let anyone force you!

If the milder pain management fails, you may need to add a mild opiate to your management, either long acting or short acting or both, there are some different to choose from and even though they’re considered pretty equal, you may have very different effect from them depending on which type your body handles the best. Tramadol and Codeine belongs to this group of opiates.

If the weak opiate fails for you, you may need the stronger opiates, for example morphine. At this point if tablets are failing you, or you’ve experienced in the past that tablets work very unevenly for you, you may be put on a transdermal patch or a tablet that you let melt under your tongue.

Transdermal patches are likely the most stable pain management you can have for chronic pain as it doesn’t matter which mood your stomach is in, it also tends to affect your intestinal motility less than oral opiates. The drawback with transdermal patches though is that your skin may not tolerate it, but should that be the case, don’t give up instantly but ask to try different brands of patches as different manufacturers have different adhesives, you may tolerate one better than the other.

There are also implantable devices such as a spinal cord stimulator that uses a weak electric current to block some of the pain signals from reaching your brain, or an implanted pump that pumps medicine directly into your spine canal. The use of such devices comes with a risk though as people with weakened connective tissue are already at an increase risk of spinal fluid leaks, and refilling a pump also poses a risk of getting an infection if any contamination happens to go into the pump through the needle used to refill it. It does however tend to be very effective ways to treat pain, and with the medicine pump it means having much lower doses of medicine doing the same job as higher doses did orally or transdermal as the medicine from a pump is infused directly into your spinal fluid.

Antidepressants and anti seizure medicines are mostly successful in treating nerve pain, but it may or may not work at all, and it can take a long time to find out which it is and during that time you may experience very unpleasant side effects too. If you have nerve pain that isn’t very wide spread, a lidocaine patch may be a good option to try too, it’s just regular local anesthetic on a patch that you put on the area that needs numbing, this tends to work well even for Ehlers Danlos patients who don’t get normal effect from local anesthetics normally.

Both for muscle, joint and nerve pain people may experience relief by using a cream or ointment on the hurting area, it can be Voltaren gel, Bio Freeze, Tiger Balm, horse liniment or something else, in some places a compounding pharmacy can even make a custom made cream for you to use according to prescription by your doctor.

I know a lot of people are worried about addiction when it comes to pain management, but if the medicine you take works for you, is used for the right reasons and in the right doses, the risk of actual addiction is pretty low. The one big thing to look out for with opiate use is tolerance, you don’t want to have to increase your doses too rapidly as there will be a point where you reach your body’s tolerance ceiling, and strong opiates are in a way a last resort, there isn’t a whole lot of options left when you’ve reached that far, so you would want to avoid it for as long as you possibly can.

There are also natural ways to relieve pain, such as meditation, yoga, relaxation, massage, acupressure, acupuncture, TENS units, Ice, heating pads, dietary changes, exercise and whatnot. For some it works very well, for others it doesn’t. It’s a trial and error to find the method(s) that works best for you, with or without taking medicines.

Don’t be afraid to educate yourself about different options and methods, the more you know, the more you can work with your doctor to find the best solution for you! You know your body best because you live in it day and night, your doctor doesn’t know what you are feeling! Always consider the benefits versus the risks when it comes to your treatment and don’t take more medicines than you absolutely need.

Do not make any changes to your current regime without first consulting your doctor!

I am by no means a doctor, nor will I ever be one even though it was once my childhood dream. I am just an Ehlers Danlos patient living with pain, living with pain management and I’ve spent a lot of time reading up on different medicines and methods both because I’m interested in reading about it, and because I’m living with it everyday of my life.
I’m personally on a transdermal patch for my pain and for the most part, that has me covered enough to get on with my day. At the moment I do not have a breakthrough medicine for pain even though I should have one available for acute pain, I do however have a muscle relaxant for when my muscles get too tense or when I get spasms. I try to breathe through acute pain and also use relaxation and TENS as needed, sometimes I may use heat or ice. Unfortunately I am intolerant to exercise, all it does is causing more pain, but I do try to live as actively as I possibly can. But for those who can tolerate to actively exercise, having a physiotherapy program that fits your needs may be very helpful both in strengthening the tissue around your joints and manage pain.

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Managing pain with Ehlers Danlos Syndrome, my journey this far.

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As someone living with Ehlers Danlos Syndrome and having pain as one of the worst symptoms of the syndrome, I had to make the decision about medicine about three years ago now. At that time when I began taking medicine daily or close to daily, I was still working full time at a physically demanding job. While I’ve been in some level of pain all my life, it wasn’t until 2010-2011 that the pain level got to the point where it was affecting my everyday life negatively. Before that time, I had only taken the occasional paracetamol or ibuprofen every once in a while, unless I had an injury or flare of something that required prescription medicines.
Anyways, in early 2011 I got to the point where I could no longer manage at work without painkillers, it was really a choice between painkillers and being able to work, or no painkillers and resigning there and then. Seeing how I loved my job, I went with the painkillers and lasted at work for a few more months before I was laid off due to my health situation in summer of 2011.
By the time I got laid off from work, my pain had already reached the level where it affected my whole life but I was able to workout some with painkillers. I did however have periods where I did not take any painkillers, because I could manage without at times where the pain wasn’t as intense. Then in late 2011 I also had to face going up in strength of painkillers, switching from tablets to transdermal patches because the old painkillers no longer worked, or maybe they always worked poorly, I’m not sure there as painkillers tends to work very oddly in EDS patients.

2012 came and I got off my stronger painkiller and even managed without any medicine for a while before the pain limited me too much again and I got back on painkillers, though a weaker kind that did nothing at all for me, so I was switched to stronger medicine again which worked and I took that as needed only for several months before having a long acting medicine added. I took the combination of long acting and short acting for over 6 months, with varying results, some days I got good effect from the long acting, other days I was wondering if I had even taken it. By June last year after too much fluctuations in the effect of my regime, I was put back on the transdermal patch that I had for a while in late 2011 to early 2012.
Transdermal patches are no child play, it’s pretty damn potent stuff and if used wrong, the substance can kill you. But if used right, it’s an excellent pain management with very stable effect!
I’ve now been on the transdermal patch continuously since June last year, and while I’m far from pain free on it, my pain is brought down to a level where I can live with it and function somewhat as long as I pace myself and rest a lot. I remain on the same dose still, which is also the same dose I was on when I was first put on the patch in 2011. I’m very happy that I’m able to stay on the same dosage, as that medicine generally have you build up tolerance so you need to increase the dose regularly on it.
I am resistant to a lot of painkillers, but when I find something that works for me, it works for a long time and at the same dose for a long time.

As much as I hate being on any substance continuously, I choose to still medicate as it does improve my quality of life, and in my case, completely without side effects! I do wish I could manage without any painkillers, but in my life, taking painkillers is the lesser of two evils. And having my transdermal patch enables me to drive, it makes me physically able to be up more, go places, be social with friends more, I’m able to think more clearly as less pain means less brainfog.

I do actually have a high tolerance to pain though. Having been in some level of pain all my life kinda does that. I can sprain something and just keep going, or even break a bone and barely say ouch. The big issue with EDS pain is that it’s so wide spread, along with being intense and the intensity may fluctuate as well, and then add injuries to that like sprains, subluxations and dislocations. A broken bone is just pain in one place or small area, now imagine having that pain in your entire body, all the time, plus the injuries.

I truly take my invisible hat off to those who are able to live with severe pain without taking painkillers. I wish I was able to do that too and have tried several times, but always end up stuck in bed from the pain so I have to start medicate again! The human body is truly a remarkable collection of atoms. Everyone reacts to pain differently and manage differently. Even if two people have the same pain, one may do well without medicine and the other may have to take medicine, depending on how their body reacts to the pain signals.
“Giving in” and taking painkillers to manage is not a sign of weakness though, you just do what you need to do to regain some function, Only idiots would take painkillers for fun!

As for addiction, dependence and tolerance. I am personally not addicted to anything, I do not get withdrawal symptoms if I quit my medicine, the only thing that happens is that my chronic pain creeps back up to the level where it would be had I not been on my medicine, and I would be having more pain flares. Am I dependent? No, not to a substance, I only depend on having a working pain management and it doesn’t matter what substance it is as long as it does the job. Tolerance, well as I mentioned above, I am resistant to many painkillers, and I tolerate horse doses of mixtures of very potent painkillers and severe pain flares like post op pain is very difficult to bring down, but when I’m on something that does work for me, I’m able to stay on a relatively low dose and stay on that dose for a long time without needing an increase.

Again, I wish I could manage my life medicine free, but due to how foggy my brain gets from too much pain, and how limited my physical function gets (and is even on medicine) I sadly see a future with painkillers. Maybe I’ll have the opportunity to try something else one day, non medical like for example a spinal cord stimulator, but seeing how EDS weakens connective tissue, and the dura around the spinal cord is connective tissue, we aren’t really supposed to mess around with the dura if it can be avoided, so I really don’t know. Another downside of having an implanted device is that it prevents you from having an MRI and I may need a fair few more of those in my life, and prefer that rather than a CT scan due to the radiation of a CT. It’s something I’ll discuss with a pain management doctor if I get to see one someday though. I was referred to see one, but seeing I don’t have cancer, the pain management clinic my doctor tried to send me to just sent the referral back *sigh*

I do use alternative methods as well, like breathing through the worst pain if I can, relaxing, using TENS if it’s a small area being nasty and acupressure cushions. None of the alternative ways works good enough though, it just works as a compliment to my medical pain management, and may make me able to get through a flare without taking any extra painkillers.

Living on disability

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As someone living on disability due to the effects of my condition, I thought I’d share some thoughts on what it is like to live on disability.

I have only had disability benefits for less than a year this far, but it has been almost three years since I was laid off from my job due to my deteriorating health and I have not been able to take a job since as I was already at a level where I couldn’t even have functioned in a less physically demanding work environment. Seeing how I can’t sit for long, am both sound and light sensitive, even a “simple office job” wasn’t and isn’t possible.

Filing for disability isn’t something you do because you want to, it’s something you have to do because you aren’t able to take a job, no matter how much you want to go to a regular job, doing so just drains too much from you, putting your health and well being at risk. Sadly there are people who abuse the system, so many who are genuinely ill have a hard time getting approved, some may have to appeal several times before finally being approved. One would think the people working with your case would realize that you truly need to be put on disability if you get denied and appeal each time, it’s not without reason that the person appeals when their application is denied!

People on disability are sometimes seen as lazy or unmotivated by the general public, the general public who hasn’t got a clue about what it is like to live with a debilitating condition, a condition where simple things the general public takes for granted, may be a major achievement for you, there also tends to be a lot of medical appointments in our lives, and a big need to just lay down either to rest, or lay down to do things- I’m laying in bed as I’m typing this. Our “full time job” is to manage our health and pace ourselves, and believe me, living with a chronic illness can indeed be a full time job chasing after different doctors, going to appointments and everything else. You basically have to be at full health to have the energy it takes to be sick.

Living on disability doesn’t mean you do nothing with your life though. We’re not just staring at the walls of our bedrooms! We tend to be active in social media, we have hobbies, we do everything our bodies allows us to do, and often push ourselves beyond our ability. We find things to fill our days with, things that are worthy, and we have a purpose in life! We’re just not able to follow the norm with getting up every morning, go to work, work all day, go home, fix dinner and all those things that most people would call a normal day.

 

A normal day for me can look like this: Fall asleep after dawn, sleep poorly for a few hours, need hours to properly wake up, go on some errands if having any, go to appointments if having any, calling different clinics if needing to see anyone in my medical care team that consists of two occupational therapists at different clinics in different towns, orthopedic technician in yet another town, family doctor and from time to time, gynecologist. I *should* also be seeing a neurologist or neurosurgeon and cardiologist but I haven’t gotten to it yet due to my family doctor not knowing what to do with me and being very slow with referrals. I also happen to live in a country where some of my suspected conditions (occult tethered cord, cervical instability and Chiari malformation) aren’t widely recognized, so I’m on my own basically, at least until I am able to find a doctor who recognizes those conditions and can confirm or rule out.
When I have been outside somewhere, I usually have to rest for at least an hour or two or I won’t have energy for the rest of the day. Failing to rest properly may cause pain flares and worsening of the fatigue.
I spend a fair bit of time on social media, talking with others living with chronic illnesses and raising awareness for my conditions and other rare conditions. I may also work on some projects that I have to fill my days with more meaningful tasks, it’s things I do because I like it, and it’s things I do completely on my own conditions.
I may watch a movie at times, often at night when I have nothing better to do at the time and am not able to sleep.
Then I fall asleep again sometime after dawn.
This is just my life, someone else may have a completely different story.

I and others living on disability live a very rich and full life, we’re not lazy or unmotivated, we’re just unable to have the kind of schedule that a regular employment requires, due to our health situation and frequent medical appointments.

Don’t judge what you don’t know!

Coming to terms with your situation

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No matter if you are newly diagnosed with your condition or if you have known about your diagnose throughout most of your life, there will be times where you face difficulties.
The difficulties can be anything from an injury needing to heal, your condition having progressed so you’re forced to make big changes to continue feeling well, or maybe you’re facing a major surgery.

Whatever obstacle you’re facing, always hold your head up high, don’t let difficulties drag you down and make you depressed!

An injury will heal, it just needs its time to do so, and the time needed may be much longer if you live with a connective tissue disorder. Never feel ashamed of showing your condition out in the public! If your condition has progressed so to the level where your mobility is compromised, there’s absolutely nothing wrong with wearing visible joint bracing, using a cane, crutches or walker even if you’re young, or use a wheelchair even though you are physically able to put one foot in front of the other! Let people stare if they wish, it’s not your problem! If anyone asks you, see it as an opportunity to educate and spread awareness about your condition, who knows, maybe the person asking is just curious? Or maybe he or she also lives with an invisible illness or know someone who does.

It can be difficult to accept needing to use aid to get around, a cane or walker “that’s for old people!” and wheelchairs have a bad reputation which it doesn’t deserve. While yes, if you get a standard hospital wheelchair, it may be more pain than gain from it, but if you get a wheelchair that’s been custom built for you, to fit your measurements and needs, there’s no stopping you unless you approach stairs and there’s no elevator or the elevator is broken! Many wheelchair manufacturers also offer different color options, fabric options and wheel and caster options so you can get the nicest ride in town if you wish!

As for a cane, crutches or walker, not only old people use them! Young people do as well, and there’s so much more than the standard grey aluminum kinds out there. Get a nice cane or set of crutches and if need be, pimp the hell out of it to make it represent who YOU are!

If you need to wear bracing on your joints to support and protect, there’s a lot you can do to make your braces look nicer, or opt for bracing that both looks nice and has the function that you require from it. The opportunities are endless really

 

Do whatever it takes for YOU to be as mobile as possible and protect your joints and yourself from injury! There’s no right or wrong when it comes to choosing whether or not to use a medical, as long as you use your equipment right and for the right reason it can truly enhance your ability, but there’s nothing wrong with choosing to not use a device either. Each to their own as I always say.

 

If you’re facing a major surgery, sometimes you have a choice to delay or avoid, sometimes you don’t. When it comes to surgery, a planned surgery is always better than having to have the same things done as an emergency. With a planned surgery you can prepare for it both mentally and physically which may give you a more smooth recovery.

Surgery is some pretty scary stuff, but don’t let your fear stop you from having it if the surgery means you’ll get a higher quality of life, or even have your life saved by it! Just try other options first if possible, surgery should be considered a kind of last resort due to the risks.

 

If your condition has left you unable to work, try to find other things to fill your days with. Maybe you’re good at crafting things or play an instrument? Find your talent and use it! Getting laid off from work due to poor health isn’t the end of the world, and being young and disabled doesn’t mean you’ll be stuck between four walls all the time. There are so much more to life if you just choose to see the opportunities rather than locking yourself up in a cocoon of self pity.

 

Whatever your obstacle may be, always remember to hold your head high, be proud of who you are and what you have accomplished, face things with a positive attitude, don’t let negativity take over and remember to LAUGH!

My experience with Physical Therapy

 

Before my EDS diagnosis, I was diagnosed with Fibromyalgia and referred to physical therapy. When I explained to the therapist that my pain became unmanageable after the birth of my son, she decided that I “hadn’t gotten back in shape since pregnancy.” I thought it was odd that she’d think this of me, because I had lost 60 pounds of baby weight and was fairly muscular due to my extremely physical job. She noticed that I had scoliosis and that my hips were uneven, (which I was unaware of). She gave me a thorough evaluation, did measurements, and tested my strength. The plan was to strengthen my body all over. I attended sessions twice a week, sometimes in a heated pool, and the hot water felt nice on my sore body. I soon found that physical therapy was making me feel more sore and more tired. I struggled with the pool exercises, because I’d be standing in a forced current (meant to create the need to balance) and I was gripping the bottom of the pool with my feet and fighting to keep my balance while exercising. I would always feel so painful and tired after my PT sessions, and I wasn’t sure why. When I had my 10-week evaluation, I had made no progress or improvements in strength or range-of-motion. I became discouraged and basically stopped attending these sessions, feeling like it had all been a waste of time.

Soon after, I received my EDS diagnosis. When the geneticist explained treatment options, she told me that physical therapy could help me. At first, I was not interested in trying PT again. But, through discussion in a facebook support group, I learned that there was a PT center in my area that was run by Dr. Healy. Dr. Healy has taken special interest in EDS patients and has spoken at the EDNF conferences. I have attached a video of his speech and slideshow at the bottom of this post. When I found out that this PT center was a 3-minute drive from my house, I knew that I should give it a try. I found out they would accept my insurance, and I set up my first appointment.

At my evaluation, my PT explained that they take a very different approach to treating Ehlers-Danlos patients. Their goal is to use myofascial release to loosen tight, painful knots that exist in our muscles and soft tissue. They also use chiropractic techniques to re-align structural problems. During a session I’d receive hands-on treatment, followed by guided exercises and simple stretches. I felt that these sessions were very helpful, and the PT staff was very gentle and kind. I was given a giant binder full of information about EDS, and was introduced to several other EDS patients. I had attended about 10 sessions before I had my session with Dr. Healy, who understandably had a bit of a waiting list. Dr. Healy is literally the kindest doctor I have ever met. He evaluated my situation, and talked to me about my history. He did an adjustment on my hips that relieved the aching in my thighs, and relaxed the tight muscles in my neck. I will never forget his poignant words: “Only you know what is best for your body, don’t let anyone tell you what you can or can’t do.” He also referred me to many local specialists for all of the specific symptoms/disorders that coincide with EDS.

My experience with this new physical therapy team has surpassed my expectations for what I’d gain from PT treatment. I have only felt relief after my sessions and not pain. They have given me hope that this type of treatment can benefit my body. I have felt my super-tight muscles loosen and become less painful. I have found the exercises helpful, and I know they are meant to be a very gradual method of strengthening my muscles, in order to better support my joints. I know that my insurance won’t cover this treatment for much longer, but, if I was rich, I’d keep attending these sessions for a lifetime! In the attached link, there is a speech by Dr. Healy where he describes the specific methods that he and his team use to treat EDS patients.

 

 

Recording and Slideshow of Dr. Healy Speaking about Physical Therapy as a Treatment for EDS

An Introduction by Jenny R.

Alright, well, I’ve never had a blog before, but I was kindly invited to add my words here, so I will. I was inspired to write on this blog by my new friend Jen, who shares a similar medical condition with me- Ehlers-Danlos Syndrome. This has been an interesting journey for me, which has led me to the place I am right now. I have finally accepted my diagnosis after several months of confusion and despair. But, I should start from the beginning.

I have always been a really hard worker. I would pride myself on being fit and strong, with a bit of an athletic streak. I always participated in sports as a youngster. I worked full time while attending college full time, burning the candle at both ends to achieve a 4-year degree in Psychology. In 2003, I began working for a greenhouse who supplied massive amounts of plants to the Home Depot. My job was to receive the plant shipment and stock the plants onto the large display tables in the garden center. It was grueling, dirty work, but I liked it. I felt comfortable in the atmosphere of the garden center, and I have learned so much over the years. I would feel sore and tired after work, but I attributed this feeling to the extreme physical nature of this job. 

I met my current boyfriend 6 years ago because we worked together at home Depot. We moved in together and had a son. After I had my son, I felt quite exhausted and sore every day. When I asked the doctor why I felt this way, she explained that it is common for new moms to feel sore and tired. She advised me to lose weight, and told me I’d feel better once the extra weight was gone. I was also sent to physical therapy, which didn’t really help. I gradually lost the “baby weight” but continued to feel tired and felt pain mostly in my back and other joints. I told my doctor, “something is wrong with me!” but, she dismissed my symptoms as “new mom syndrome.” I suffered from recurring kidney stones, and kept going to the doctor for treatment.

At this time, my best friend was having her own health problems. She had been diagnosed with severe fibromyalgia, among other things. She mentioned to me that I was having many symptoms of fibromyalgia, so I decided to ask my doctor about it. I printed out a checklist of fibro symptoms and checked all of the symptoms I was experiencing. When I showed my doctor this list of symptoms, she could not deny that I must have something wrong. She sent me to a Rheumatologist, who diagnosed me with fibromyalgia. She gave me some tramadol and sent me to physical therapy. I was struggling at work, becoming more exhausted and sore by the day. I would always have to really focus on my walking, like, I had to try hard to walk straight and normal. I suffered so much pain while working, but I was stubborn and kept my job because I loved it, and I needed enough income to support my son.

By the end of the 2013 work season, I felt very broken. I could not work to the capacity that I expected of myself, and that my company expected of me. I could feel the disdain from my coworkers as they sometimes picked up the slack when I couldn’t complete as much work as I used to. I told a few people at work about my chronic pain, but mostly they would make a light joke to change the subject, “oh you are too young to feel such pain” and “what will you do when you are my age?” from the older workers. I really didn’t get any sympathy, even on days when I was limping and gritting my teeth in pain. I was relieved when the season ended in October, and I took my usual winter lay-off.

A few months prior, my best friend had become diagnosed with EDS, and she explained the symptoms to me. As we read about it together, I realized that I had many of those symptoms, especially hypermobility. I asked my primary care doctor to refer me to a geneticist, and it was the geneticist who diagnosed me with EDS. So, my many odd symptoms actually make sense now, because they are mainly caused by the EDS. I thought what a coincidence it was that my friend and I BOTH had EDS, which is notably rare. Once I searched online for support groups, I realized that there are many, many EDS patients out in the world, and several even in my small state of Rhode Island.

Ehlers-Danlos Syndrome is the cause of several other conditions that I have to deal with on a daily basis.  POTS, Reynaud’s Syndrome, Osteoarthritis, Tinnitus, and headaches, among other things. I have changed jobs and am now working as a part time data collector and freelance writer and editor. I find that nearly every day is challenging, but I am giving my best effort to keep a decent life. There are a lot of things that I’d like to do in life, and I am doing my best to not let my health problems stop me. I may have been slowed down, but I am still following my intended path, one step at a time. 

 

Ehlers Danlos Syndrome

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Ehlers Danlos Syndrome, often simply known as EDS is a genetic connective tissue disorder where one or more types of collagen is affected. There are different types of Ehlers Danlos Syndrome: Classical, Hypermobility, Vascular, Kyphoscoliosis, Arthrochalasia and Dermatosparaxis.

Hypermobility type is the most common type, followed by Classical type. Vascular Ehlers Danlos Syndrome is considered the most severe out of the “common” types of Ehlers Danlos Syndrome and that’s due to the weakening of blood vessels and organs that increases the risk for aneurysms and dissection.

Kyphoscoliosis, Arthrochalasia and Dermatosparaxis type are all very rare, between them all there may be as few as 100 cases confirmed.

Symptoms of Ehlers Danlos Syndrome ranges from mild to severe and it isn’t uncommon to have crossover symptoms from another type. The wise are still arguing whether you can have only one type of Ehlers Danlos Syndrome or if you can indeed have more than one type. I personally prefer to say someone has one type, with crossover symptoms of another type, but I am no doctor.

The hallmark of any type of Ehlers Danlos Syndrome is joints that can move beyond normal range of motion, and some kind of skin involvement, the most known being hyperelastic skin. Skin involvement also includes velvety soft skin, a doughy feeling, too much skin, abnormal scarring, striae and translucent skin. You can have one or more of the skin symptoms.

Ehlers Danlos Syndrome also causes a lot of pain for many patients, often both chronic and acute pain and it may be very complex to treat as it’s not uncommon to be either very sensitive or resistant to medicines. It is sadly all too common that doctors don’t understand the pain, and as it for the most part can not be seen on imaging, patients are often labelled as drug seekers or have their pain labelled as psychological when it’s very much physical. It can take a long time to find a doctor who understands the complexity and to get a good pain management.

Ehlers Danlos is so much more than skin and joints though, you may also have some form of dysautonomia, Chiari malformation, pelvic floor prolapse, IBS, heart problem (mostly mitral valve prolapse) or early onset arthritis for example.

You are born with Ehlers Danlos Syndrome but for some, symptoms don’t develop until later in life, or the symptoms are so mild that you mistake them for something else.

If you suspect you or a loved one may have Ehlers Danlos Syndrome, talking with your doctor is the first step to make. Depending on your location, where and by whom you’re diagnosed may vary.

Pages to learn more about Ehlers Danlos Syndrome:

http://ednf.org/

http://hypermobility.org/

 

A great support group if you want to talk with people living with Ehlers Danlos Syndrome, Dysautonomia or Marfan Syndrome without religious involvement:

https://www.facebook.com/groups/HumanistZebrasforEhlersdanlossyndrome/

A great support group if you want to talk with people with Ehlers Danlos Syndrome or Marfan Syndrome and don’t mind the occasional religious mention:

https://www.facebook.com/groups/152615741473177/

Please note that trolling or spam is NOT allowed in either of the groups!

 

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An introduction

I got inspired to start this page as I’ve seen more than once that support groups that are meant for everyone ends up being taken over by religious people who simply can’t keep their beliefs to themselves. And should I or another atheist say anything about it, we’re suddenly the oppressors. I’ve had enough of it! I respect that people believe, as long as they respect that I don’t!

So, who am I then?

Well, I’m a woman in my late 20’s, my name is Jennie but you may call me Jen, I live with Ehlers Danlos Syndrome and some of its side conditions. The side conditions I live with are POTS, migraines, suspected cervical instability of some kind, possible Arnold Chiari malformation, possible Occult tethered cord syndrome, chronic pain and chronic fatigue, and I also have a condition not related to Ehlers Danlos Syndrome: Scheuermann’s disease which is a condition of the spine.

I grew up in a small town in Sweden where the majority of the population is religious, in fact, I grew up right next to the biggest church in town, and I again live right next to it basically. When I grew up, I was Christened as a baby because it was the tradition to do so in the 1980’s, but my parents have since let me decide for myself, and they’re agnostic or atheists themselves. I was a scout for several years in the church I live next to, but to me, scouts was just a social thing, a way for me to hang out with friends out of school and get out in the nature a bit. Even at such a young age, I’d run and hide when the bible was brought out as I had no interest in worship and did not believe in God.
As I reached my teens, I stopped being a scout and time came to decide whether I should take the Confirmation or not, it’s tradition to go through with it and a lot of people do no matter if they believe or not. I started taking lessons for it but only went a couple of times before I dropped out and loudly declared that I do not believe in such crap!
I have since been an atheist who isn’t afraid to be open about it.

As for my conditions, they’re genetic and I was born this way! Some conditions has appeared as I’ve aged, but they’re a result of the genetic condition.

Some may say my conditions are a punishment from God because I don’t believe, but to those people I say: READ A BOOK ON GENETICS!
It’s also likely that I inherited my condition from both my parents as there’s signs of Ehlers Danlos Syndrome on both sides of my family.