Diagnosis

Let’s start off with something happy. My garden is flourishing:

Today's scenes from my garden. Lovely flowers blooming. #gardening #flowers

A post shared by Andie W. (@sewprettyinpink) on

I got more flowers and the back planter is fixed, but not yet rid of the rogue tree in the planter. Once the tree is gone, I can dig out the roots and finally refill the planter. I think some more hostas and a shade-loving flowering bush or two would be awesome.

On to the not-so-happy…

I’ve been pretty transparent about my health issues on this blog and I wanted to update since I finally got diagnosed. I have ehlers-danlos syndrome hypermobility type. It’s a connective tissue disorder that presents with hypermobile joints, chronic pain, thin skin, (cigarette paper) widened thin skinned scars, frequent bruising, and poor wound healing. My connective tissue which keeps my joints in place sucks and doesn’t help keep my joints in place at all. This explains my frequent subluxations/dislocations (subluxation is where the joint goes back in on its own and dislocation is where you need to push it or pop it back into joint) and chronic pain, but no signs of arthritis or joint swelling. EDS is often misdiagnosed as fibromyalgia, but can also come with a diagnosis of fibromyalgia. My pain is from hyperextension of my joints and damage to the soft tissues, but ultimately doesn’t affect the bones except as a result of injuries from dislocations. The injuries can lead to arthritis, but EDS itself doesn’t cause it. I’m glad to finally have a diagnosis and have a plan for treatment. I may also have other associated disorders, but those diagnoses will come later.

I have to work with a Physical Therapist to build up my muscles to give more support to my limbs. Some of my joints need braces and splints in the meantime to at least give me more confidence while walking. I walk slowly because I’ve had my knees give out so often. I used to be a fast walker. While I currently walk 6-10km per weekday, it’s not really doing much when I can’t build up the cardio aspect by walking faster. It will be a tough road and I will have more injuries along it. I know the injuries are just part of EDS and I can work on more preventative measures, but there will be injuries.

At least now I know the words and doctors can stop telling me it’s in my head and that I just need to lose weight and all my issues will disappear! Oh, the magic of weight loss… GPs love telling people weight is the issue and not a symptom of bigger problems. It’s tough to loss weight when exercise literally dislocates your joints… 5ish years ago I was 60lbs lighter than now. I was walking 10-15km per day and doing an hour of cardio and yoga per day. I was supposed to be in the best shape ever and on the road to even better shape with a lighter weight, but it was really the start of all these problems. My hip started dislocating and then various other issues arose along with another major knee injury (I’ve injured one or both of my knees several times throughout my life). My quality of life since has gone down significantly and I’ve gained back 60lbs. Luckily, my diet is pretty balanced so I’ve stopped gaining weight and have found that the summer has helped increase my activity for me to lose a couple of pounds. I’m sure that the increased weight has contributed to my increased pain and joint dislocations, but I haven’t had proper medical care until this past year to support me in any weight loss. Now I have a different GP and a diagnosis, I know what I can do to help myself. Weight loss won’t be my focus at all, but it might be a result of all the work I need to do. Weight loss is the furthest thing in my brain right now. I’m not going to beat myself up for not losing anything like I would have years ago, but I will be upset if I don’t build muscle mass and start feeling better. I shouldn’t be pushing myself with high-impact workouts or cardio. I need physical therapy, aquafit, and some weight training with a PT that understands EDS. I need to stop the decline now before it gets worse.

You’ll see swimsuit sewing popping up in the next while. I’m joining a YMCA with a warmish pool very close to my house and am going to need a bunch of suits. Swimming really is the best exercise for me and luckily I am part mermaid. When I was younger, I spent hours in the water if my parents let me. I will have to start out small and work up to a daily regiment. I have to be very careful to not injure myself (which can even happen in the water because that’s how bendy my joints are…) and work closely with a PT on every exercise.

Part of me is really relieved about the diagnosis, because it’s a name finally and actually matches up with all of my symptoms including GI issues. Many specialists told me that I would likely be diagnosed with it so I was prepared for it in one way, but the other part of me is scared and worried about the risk of injury as the reality of EDS sets in. It doesn’t ever go away. I know braces/splints and building muscles will help build confidence for the movement my body needs, but it’s a scary diagnosis and often the extent of the injuries and chronic pain leave people disabled. I already feel like a lot of things are cut off to me and I’ve spent the past two years really cutting back on my social life, because I just can’t do what I used to be able to do. I can barely hold groceries or pick up a laundry basket without feeling a joint dislocate/sublux. Even putting on a bra can sometimes lead to a subluxation of a rib or my shoulder or even my thumb. My chronic pain keeps me up at night, makes me exhausted early, and even makes sitting out the couch difficult since my right hip is prone to subluxation in any position. Even sewing can be difficult. The positive thing is that it won’t get worse as I age. It gets worse with injury and complications associated with that. Working on injury prevention and muscle tissue will help more than anything else.

I still have a lot more to learn, but at least I have something to research instead of a bunch of symptoms. I’m grateful that I finally found a team of medical professionals that can help me. Mostly I am grateful for my husband. He takes care of me and is my biggest patient advocate. He carries the groceries and takes the laundry baskets down two flights to our laundry room. He makes sure I rest when I need it and reminds me to stop. As we approach our first year anniversary of marriage, I’m more grateful than ever that he is in my life. He’s truly a wonderful man. I’m also pretty transparent about my love for him. 😉

I’m trying to keep positive as I juggle the emotions associated with this diagnosis and plan out treatments with the professionals. It’s tough, though, and my sewing mojo has definitely decreased. I’m a bit depressed to be honest. I’ve struggled with it in the past and have felt it as my body declined. I find the plants help, which is why this post started with them. They give me something to focus on for care. I’m a nurturer so I feel better caring for others than focusing on myself. I miss my cat’s comfort for times like these. She would curl up with me in bed and purr like crazy when I felt sad or ill. My husband is a good cuddler and I don’t need to clean a litter box for him. Ha!

I’ve joined some support groups online lately and have found comfort in talking to other zebras:

why-the-zebra

Everything in life takes hard work and I’ve never been one to let that stop me. I’m strong.

My tomorrow will be better than today and not worse than yesterday.

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42 thoughts on “Diagnosis

  1. You have all my sympathies. My daughter has a genetic condition that results in serious joint issues as well, and is in pretty well constant pain from what other people would consider to be minimal movement. As a result she doesn’t move much, needs a PT to strengthen her muscles to support her joints, has a walker, etc. I’ve had a good close view of how hard it all is and it is very, very hard.

    I hope the therapies and treatments make a positive difference asap. 🙂 I wish you many cups of tea (or beverage of your choice) and compassionate and competent medical help.

    • Thanks so much, Andrea. I’m so sorry to hear about your daughter. ❤ ❤ I know a lot of what she is going through. I imagine, though, with a fabulous mom like you she is pretty happy. It helps so much when the people in your life are amazing. I think we fight harder when we have that support in family, friends, and medical professionals. ❤

  2. Oh Andie, I am so so sorry to hear this! I had thought when you dislocated your shoulder that it was due to some sort of accident. I had no idea. I think that my bones are degenerating. It’s getting hard now for me to hold my head up and I have the neck pain a lot. I don’t think I have what you have, but my medications have caused a lot of the deterioration. Be strong and work at it little by little. Take care of YOU! Kathy from Arizona

    • Thanks, Kathy. Unfortunately, my shoulder dislocation was just from slinging a backpack over my shoulder. Very little can cause it. 😦

      I’m so sorry that you are in so much pain, too. I hope there is something that can be done to help. It’s so awful when the medication we need to stay alive starts causing issues in other ways. I’ve heard of it so much lately. 😦

  3. Hi Andie, While I don’t share your specific condition with my own conditions I do share many of your symptoms and understand your frustrations. I’m now wheelchair bound as although most of my medical issues shouldn’t cause this putting them all together in one body did. That said I’m determined to stay Me, as I’m sure you are too. I find that preheating my bed with a heated underblanket helps a lot.
    Totally with you on the weight thing, I used the “Sugar Dettox Diet” and lost 10 lbs but I lost 1/4″ in height too. Since then I’ve lost 6 stone in weight and 2″ in height. Though Drs have no idea why it’s happening I’m shrinking in every direction 🙂
    So from a different kind of Zebra in England, Good Luck.
    Ps, loved the flowers 🙂

    • Many hugs to you, fellow zebra. ❤ ❤ EDS and other rare conditions like it are so different from one person to the next. I hope they are able to help you even if they don't know the cause. 😦
      Preheating the bed sounds like a really good plan. Thanks for that tip.

      ❤ ❤

  4. Wow, I’m so in awe of you and your sewing, I’m even in more awe and admiration of all that you have done with all these issues and yet you do such good work and get it done. I’m not going to say that I’m sorry, you have life, that’s hope in itself, you have an diagnosis and with hard work and determination, you will get through it.. All the best!

    • Thanks, Aisha. Sewing is a huge part of self-care for me and one of the reasons why I make so much. It does a couple of things: 1) gives me a task to accomplish and 2) gives me a something to hold/admire after. Creative therapy is awesome.

      I love the way you put it. I have life. I’m also going to live it to the fullest! 😀

      Many hugs to you! ❤

  5. My dear friend this blog fills me with mixed emotions. I am so excited and happy for you that you have a name to hang your symptoms on as it makes treatment so much easier. On the over hand, my heart aches for you when I read how much EDS limits you and causes you pain. I know a few other medical zebras and they are very special people in my life. Two of them are my students and they bring so much joy into our school. These students deal with pain everyday yet they manage to arrive at school with huge smiles on their faces and a positive attitude. To me they are magical and I think of them as unicorns rather than zebras. You too, my friend, bring much joy into others lives so I will dub thee Queen of the Unicorns. Sending gentle hugs and love your way. (By the way, I love that the zebra meme you posted was created by “Lucy’s Light.”)

    • Thank you so much, Lucy! ❤ ❤ You're such a wonderful person and have always been so incredible to me. I hope I can visit soon to get those hugs in person. ❤ ❤ Love you! And I am for sure making a shirt that says Queen of the Unicorns. 😉

  6. {{{hugs}}} I’m so glad you finally got a diagnosis! May life improve now that you have a better course of action and new doctors.

    You may not be all that social in the real world, but I’m so happy you’re part of my digital social life! You always make me smile. =)

  7. Oh Andie, I’m sorry to hear this, although it must be somewhat of a relief to have a diagnosis. It sounds like you have a good plan for dealing with this illness and getting stronger. And a good attitude about it. Thinking of you…

  8. This must be such a relief but also a challenge. You amaze me with all the sewing you accomplish. I wish for you many good days and excellent care.

  9. A friend of mine also has this. We used to do water aerobics together to deal with our weird chronic pain issues. Can I ask: do the dislocations hurt? A couple of years ago, I started to have this excruciating pain in my ribcage when I bent a certain way (like to tie my shoes, or hand my daughter something in the backseat of the car, ie, things I have to do all the time). Even just shifting position on the couch can do it. It made me wonder if something was being dislocated.

    Anyway, my sympathies, & I can relate. I’ve been dealing with an undiagnosed chronic pain issue for about 25 years (since junior high). I’ve seen every specialist in the book & no one can give me an answer. Without a diagnosis & a treatment plan, it doesn’t count as a “disability” as far as the government is concerned, even though it contributes enormously to my depression & inability to work.

    • I’m so sorry to hear that, Ciara. 😦 Not being diagnosed is not a good place to be, especially for disability insurance or coverage. That was a major factor for me pushing for diagnosis just in case I wasn’t able to work. 😦

      Dislocations are very painful most of the time. The odd time it’s just slightly out of place and actually oddly feels better, but those times are so rare. Most of the time, it’s exactly as you described: shift you position and scream in pain. Basically, the joint hits a nerve and the nerve sends the pain shock.

      My sympathies to you. I hope that you will find an answer one day and have some relief from pain. ❤

  10. It must be a bit of a relief to finally have a diagnosis and figure out how to deal with it. I applaud you for your positive attitude and how you go through life with such joie de vivre. Others would lay around and play the victim and yet you’re learning how to live your life accepting what you’ve been dealt and still doing what you love and looking ahead to see how you can better yourself. You are an amazing woman. Much love to you and if I were there, I would give you a huge hug. ❤

  11. Wow, so sorry to hear that you had to walk such a long road before you could finally be correctly diagnosed. I am happy that you now know what the underlying problem is and that you can now actively start managing your condition. Good thing you are a human/mermaid hybrid because the swimming will be fantastic for you! Lots of light and love x

  12. Thank you for sharing. First off I want you to know, I’ll keep you in my prayers.

    I have ankylosing Spondylitis, fibromyalgia & chronic Myofascial pain. Heart problems. IBS, Celiac. With it came gluten sensitivity, major allergies (I can’t touch plastic or anything red and everything else from a-z), temperature intolerance, sleep disorder which of course causes chronic fatigue and fogginess. I’m also hyper mobile but the AS is tasking care of that. You know, I’m probably forgetting a few diognoses too. How bout you? It gets crazy after awhile.

    I found a wonderful e-newsletter called the mighty. It’s empowering and can help when you fall depressed. They are always looking for writers. You’d be great!

    At least for me, I believe God gave us all our own special abilites. No matter what our disabilities. I find that I can keep busy and help people who are worse off then me. (On my good days) *wink* trust me, I’m no martyr. I am a nurturer!

    I was diognosed 12 years ago after having my 2nd near death experience while pregnant with my 3rd & last baby.

    I weed out the people even family who expect me to be ok. We have somewhat of an invisible illness and some can be quite cruel. I haven’t exercised either in 12 years because I tear ligaments and break bones sitting, walking, standing up, driving, rolling over. It doesn’t take much. I love my pool! !!!!!!!!!!
    I did find an exercise life saver. I bought a well made, high grade vibration platform. It has dual moters (a must). I’ve been able to strengthen and build every muscle in my body. Plus, it makes you dump alot of toxins. I lost 30 lbs.in about 8 months by standing still. It’s most enjoyable and addicting too. 10 minutes= 1 hour of oxygen from running. It’s wonderful!

    I’m glad you finally got your diognoses. Now you can start to get some closure & start fighting.

    We are the strongest women out there. We are super heros!

    Much love to & your adoring husband. He has already earned his angel wings.
    You are in my prayers.

    • Thanks so much for your comment. The vibration platform sounds interesting. I’m glad it is working for you and has you addicted. 🙂

      Many hugs to you! Sounds like you’re keeping a positive attitude, too. We really are super heroes. Keeping a smile in spite of the odds against us.

      Sending you happy thoughts and many virtual hugs! ❤ ❤

  13. I am so relieved that you finally have a diagnosis to start from and can concentrate on treatment, instead of guessing in a fog of symptoms. All the very best, I really hope the therapy will work, improve your situation and lead to less pain.
    Best wishes!

      • I am fine, very fine, thank you. Therapy already ended last September and since then all the examinations have been without any hint of anything bad. But the first big examination that covers everything will only be in September, one year after treatment finished. Still I don’t want to think too much about what would be if…I am just glad that I am ok at the moment 🙂

      • Glad to hear! I can only imagine you would feel anxious if you thought about it too much. Best to keep it out of your head. No use worrying until you actually know if there is anything to worry about. In the meantime, I am sending so many good thoughts for you for a happy talk with your doctor then. ❤

  14. Oh Andie. I know you’ve been through it. I’m grateful that you have a diagnosis and a plan for moving forward. I hope and I will be praying that all the PT work will help you start feeling better. I’m thinking of the Darling Mermaid Darlings with all the talk of swimming! 🙂

  15. Hi Andie

    I clicked on your blog from CSC. I’m a Zebra too, EDS 3 (H type) in the main (they told me I ‘cross over’ with another type), I have all your symptoms and a few more thanks finding out after damage had been done plus the several other conditions that having EDS gives you a higher chance of having (I got XL stripes to go with my XL body lol). I know what a rollercoaster of emotions diagnosis is and the frustration of not being able to do all the stuff you want to, the trial and error of learning to pace ones self! The bizarre comedy moments that happen that make you smile when perhaps you shouldn’t. They’ll be days when you feel upset or p***ed off and that’s ok, it’s normal and you mustn’t feel bad about having those feelings… took me all of my twenties and the vastest amount of my thirties to learn that, hyperactivity and stripes seem to clash rather! If you can maintain a quality of life with physio and being careful then go for it! It’ll be easier some days than others, some days you’ll recover quicker from physio than others but it’s so worth doing. I won’t lie, it’ll be a rollercoaster of emotions honey, but you have a good man and there are a lot of Zebras in the English speaking world online for support. I’ve had a weight problem for a lot of years despite a very healthy diet. I’m lead to believe that GI issues don’t help with that. I also have PCOS which seems to affect us Zebras more than the rest of the population and that definitely does cause difficulty with weight. I’ve been with my Mister for 17 years and he is my main carer. I have a pet dog who is trained as my help dog, he is a big boy who gives big cuddles! I love sewing and many other crafts but the time I get to do them is very limited, I use the time I can’t be active to read up and watch video so when I have the chance to do an activity I’m confident in what I’m doing. Crafting has kept my hands in pretty good condition and has been good for my mental and physical well-being. I’ve found ways around difficult things in order to keep doing my hobbies. I won’t stop them, just keep adapting them.

    I wish you nothing but the best and send you a big heap of Zebra love. Good luck with everything- sewing, physio, diet, all of it! I’ll follow your blog from here on in… and send you a big stripey hug from here in the UK,

    T x

    • Thanks so much for your comment. Things will definitely be tough and I know for sure sometimes worse, but I hope for them to get better in some ways. 🙂 Zebra hug back to you!!

  16. Hi, just dropped by, but was curious – are you still getting dizzy/light headed when walking. A friend has a longer time diagnosis of ED and she has POTS with it. Apparently they go together quite frequently.

    Glad you have a diagnosis. It does make explaining easier to manage.

  17. Hi Andie, I have been keeping this in my reader until I had time to get on a computer and comment. I just wanted to say how sorry I am that you have to deal with this. It’s rubbish. I’m glad you have a diagnosis and a good medical team now, although I wish you didn’t have to. It’s so emotional and exhausting. Wishing you all the best. ❤

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