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Wednesday, May 5, 2021

Doozy of Diagnoses for Me and How I'm Handing It


This post is hard for me to write. Because while I want to share things with you, especially those of you who've been following my journey, it's also hard for me to accept these things for myself, let alone share them with others. And beyond accepting them myself, there is also accepting all that it entails.

I have recently gotten diagnosed with some diagnoses that are not temporary, they are lifelong. And I have so many feelings about it. For example, I have a hard time calling them illnesses even though they are. And I have a hard time with everything they entail. 

But before I get into what my issues with my diagnoses are, and before I even tell you what my diagnoses are, I want to talk about what my issues are that even led me to get these diagnoses.

When I was pregnant with my older daughter, Anneliese, I got a lot of pain in my pelvic region. I had shooting pain in my pubic symphasis joint, like a knife was cutting me there. This is generally known as SPD and affects quite a lot of people in pregnancy. It is caused by the hormone relaxin created by the body during pregnancy. The two bones that connect at that point separate somewhat during pregnancy, but when it separates too far it can cause extreme pain. In addition to that, my pelvic bones in the back, at my sacroiliac joint, would completely move out of alignment. My mother, who was treating me at the time, said that my pelvic bones rotated and moved so much that my spine got temporary scoliosis until my pelvis was returned to the right place. Doing anything that put pressure on one foot, or doing any twisting motions (which included mopping the floor, etc...) would cause my pelvis to sublux (which is a smaller version of dislocation), causing me extreme pain and near inability to walk or function until it was returned to its place.
Fortunately as soon as I gave birth, the issue went away.

Then I was pregnant with Rose and the issue repeated itself.

And then a little more than 2 years ago, around the time that I separated from my then husband, it came back with a vengeance. I have absolutely no idea why. I'm not sure what caused it then, because nope, I wasn't pregnant, wasn't having anything weird hormonally... My therapist and I wonder if there's any connection emotionally there, because that was the same time I had a falling out with my mother, and you pretty much don't get something more "connected" psychologically to motherhood in your body than your pelvis.

So many things would make my pelvis pop out of place, exactly like when I was pregnant. Or maybe even worse. Rolling over in bed could sublux my pelvis, as could standing up "funny". I started seeing a physical therapist then, who diagnosed me with sacroiliac dysfunction, and while I was already frequently injuring my pelvis just from normal everyday functions, I went ice skating and fell flat on my bottom and injured myself, dislocating my tailbone, injuring my muscles and bones in my pelvis... and to put it short, I have had chronic pain since then, 17 months ago. Not just when my pelvis is out of place, but all the time. Sitting too long, standing too long, just working around the house, anything that uses my body I end up in extreme pain and needing to lie flat on my back for at least an hour to "reset it".

A friend of mine who is disabled had told me that she had the symptoms of Ehlers Danlos Syndrome, but she didn't get an official diagnosis for it. This friend can barely walk, her hip joints sublux, she needs a cane when she walks and she uses a wheelchair when she leaves the house. She told me about EDS, and how she was struggling to get a doctor to assess her for it and diagnose her, and part of it definitely seemed familiar to me. 

Ehlers Danlos Syndrome is a genetic connective tissue disorder. There are so many different types, but the one I want to talk about is hypermobile Ehlers Danlos Syndrome or hEDS.
While the other types of EDS are able to be tested genetically, they haven't yet found the gene for hEDS, so there is a diagnostic checklist. 

I talk a lot on my personal Facebook page, and I'd mentioned the issues I was having. Not only my pelvic issues but also the fact that when I am walking sometimes my ankle decides to just collapse under me and a host of other physical issues. Every time I'd post about this, people would say "Hey, have you thought about looking into a diagnosis for EDS?" This would happen so frequently, and usually by people with hEDS themselves. After hearing that so many times I finally decided to look into it myself.

While there are so many different things affected by the collagen issues with EDS, with hEDS the main issues are joint hypermobility, stretchy skin, and chronic musculoskeletal pain. Check check check. It often comes in hand with stomach issues and prolapses. Check check.

Ok, now that I was open to the idea that maybe I had EDS, I had to find a doctor who'd diagnose me with it. I got this checklist for the diagnosis of hEDS and went through it with my family doctor who diagnosed me with EDS because I fit all the required criteria. He also told me that the regular nerve pain I get in my arm is likely because of some subluxation in my shoulders that puts pressure on the nerve making it hurt. That was at least an explanation for something that has been plaguing me for years.

I then went to two orthopedists who also diagnosed me with EDS. And then I went to a rheumatologist who confirmed it as well.

So that's it. I'm a zebra.

Oh yea. Zebra. According to the Ehlers Danlos Society
"Medical students have been taught for decades that, "When you hear hoofbeats behind you, don’t expect to see a zebra." In other words, look for the more common and usual, not the surprising, diagnosis. The zebra became our symbol because those with Ehlers-Danlos syndrome and hypermobility spectrum disorder are the unexpected. "Sometimes when you hear hoofbeats, it really is a zebra."
When you see a zebra, you know it’s a zebra—but no two zebras have identical stripes just as no two people with an Ehlers-Danlos syndrome or HSD are identical. We have different symptoms, different types, different experiences—and we are all working towards a time when a medical professional immediately recognizes someone with an Ehlers-Danlos syndrome or HSD, reducing the time to diagnosis, and improving pathways to care.

The thing about an EDS diagnosis is that... it's not really fixable. It's not like hypothyroidism (which I also have) that you take meds and all is better. At most with EDS you learn to manage your symptoms. Unfortunately, most doctors don't know much about managing symptoms. 

The one expert on EDS in my country is currently unavailable. At first I was told you have to send her your diagnoses and then she'll decide if she wants to take you on as a patient, but I did that and was told she no longer works there and tried a different email address and heard nothing. I have no idea how to even see her. So basically it's all up to me. There are a lot of EDS groups on Facebook where people share their experiences and what works for them and for me that really is the biggest source of support and information.

But the thing is, I also have a lot of imposter syndrome here. I mean, I'm not in a wheelchair like my friend with EDS. I can walk, that isn't my problem. (Or at least it isn't when my ankles aren't sprained- did I mention I sprain them regularly?) Am I just looking for an excuse? Am I making things up? But the fact of the matter is... my body is definitely subluxing regularly. My PT when she heard I was diagnosed with EDS said that completely makes sense with my body, because most bodies don't do what mine do, that what usually is the most stable joint in people's bodies is the wobbliest in mine. 

But still, there's that imposter syndrome, which is niggling. Am I looking for excuses?

And then I went to the rheumatologist. Because my issues are not just my joint subluxations but also chronic pain all over my body. Most of my body hurts when there is any pressure on it. Even lightly. I have very few places that I can be touched without wanting to scream in pain.

The rheumatologist checked me in a bunch of different pressure points and all of them made me scream from pain. I then got a diagnosis of fibromyalgia. Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Check, check, check, check, check. Lovely. Which, by the way, is also something that sucks. Because it's not something that goes away.

Not only that, but one of the ways of treating the chronic pain that comes with fibromyalgia is with medication such as Cymbalta. I already am taking a high dose of Cymbalta for my mental health issues. And it has done absolutely nothing for my pain, my sleep issues, memory issues, anything. I mean it helps with my depression and anxiety, but nothing for the fibro.

My doctor wrote in my file that I have an extreme case of fibro that isn't even responsive to medication thus far. Lovely. I did get a new medication to try to take (in addition to all my other meds) which hopefully will help with the pain. We'll see.

But even here I have imposter syndrome. Because my friends who have fibromyalgia seem to really be suffering. They have flares where they can't get out of bed for a week. I don't have that. I have times throughout my day that I just can't anymore and lie down, completely spent. But never for a few days straight. (I don't have that luxury. I'm a single mom.) Mind you, I'm also very good at negating my own issues and telling myself I'm making a bigger deal out of things than they really are, because of brainwashing by people who constantly told me that. So I'm not even sure how much of these excuses regarding my imposter syndrome is even true.

And then there's the whole thing of "we don't know how to treat fibromyalgia, just meds to ease the symptoms" and it lasting for the rest of your life. Again something that is hard to hear. Chronic issues.

Chronic illnesses? Or just chronic disorders? I don't even know. I don't want to think of myself as ill. I don't even know if that's the term. Maybe it is, but if it is, I don't feel comfortable using it for myself.

But here's the thing. Probably the biggest thing of all. And the reason why writing this post has been really hard for me emotionally, and honestly why these diagnoses are hard for me, and in general why I'm having such a hard time.

My entire life I never had people I could rely on. I always needed to rely on myself. And I relied on my body. My body was strong. Fast. Capable. I could do so many things with it that everyone else couldn't. Things that people said girls couldn't do, I'd look at them and say "I'm a woman, hear me roar" and show them how I could carry that heavy thing, hammer that, use my body as my power. My body literally has been the thing I relied on my whole life. My "rock" in a sense. My stability. The one dependable thing I always had in my life. I couldn't rely on others. I couldn't even rely on my brain because of my mental health issues. But my body? Oh, that worked. And was a big sense of pride for me.

And now it's not working. Now it's causing me pain. Now almost all the things I used to do and made me feel strong and powerful are things I can't do without causing myself extreme pain. My rock, my support in life, my foundation, it has crumbled, and I don't know how to pick up the pieces. 

I'm really not sure how to handle this. And I keep telling myself if I'm like this at 33, what will I be like at 40? 50? 60? I'm so young to be having all these physical issues. Especially because things like EDS can be degenerative, I'm scared.

Not only that, I want to be able to do stuff. I take pride in what I do. I want to be independent. I want to do the things that make me smile. And I'm worried that I'll slowly lose the ability to do things that I love. (Did I mention I have anxiety? Anxiety ramping up big time here...)

My physical therapist, though, has more hopes for me. She said that her work with me is intended to give more stability to my body, and if we can get my pelvic region more stable, for example, we can at least keep things as is without my condition deteriorating.

One thing both recommended for EDS and fibromyalgia is water. Regular swimming. Hydrotherapy. And this is why getting a pool is so important for me. Why I spent more on a bigger deeper pool. So that I can actually use it to help my body not hurt so much.

I am really hoping, though, that not only will I stop the deterioration, but I can also make things better, because I want to be able to use my body for things that I used to be able to do.

You know all those major shops I would do, carrying all those things from the city onto the bus home? My PT told me that doing that is really terrible for my body. Even pulling a wagon from behind me is going to mess up my pelvis. When I carry my things by bus to my foraging classes, I hurt after for a while. I hurt my foot yesterday and even walking with a limp, she said, is dislocating my pelvis, so I've been banned from working. To be honest I'm strongly thinking that buying a car will be a necessity so I don't keep on injuring myself.

At this point I'm just... so tired of hurting. So tired of having pain and no solutions. So tired of needing to spend so much money on my physical and mental health. So tired of having diagnoses for things that don't go away, but at most can be "managed".

So far, a sum total of diagnoses for me (from small to big):

Hypothyroid.
IBS.
Sacroilliac dysfunction.
Achiles tendonitis.
Plantar fascitis.
Costochondritis.
EDS.
Fibromyalgia.
ADHD.
Anxiety.
Depression.
PTSD.
And more stuff that I either don't feel comfortable sharing, or are still being figured out.

Did I mention I'm in pain? Did I mention I'm sick of so many things being wrong with my body?

So yes, with all those things, I fall under the category of invisible disability. I have a hard time calling myself disabled, not because I think disabled people are worth less or anything remotely like that, but because I don't think I deserve it, because my issues aren't "bad enough". There's a lot of cognitive dissonance there, but...

I don't even know.

I'm not even sure where I'm going with this post anymore, because I've got intense brain fog, either from fibro (yes, brain fog is a common symptom) or from dissociation and its hard for me to focus.

The two things I'm hoping will help actually improve things, so that this situation won't be a forever thing, is the somatic therapy I'm doing, which is supposed to help reduce chronic pain by releasing the emotional pain and issues that is causing the physical pain, and the physical therapy that will hopefully strengthen my muscles enough to hold my wobbly joints in place.

I'm just scared I'll deteriorate further. But that scares me. Because ending up in a wheelchair like other people with EDS isn't even an option for me because sitting for long periods of time causes me intense pain near my tailbone. And I don't know how I'd be able to handle emotionally being able to do even less than I can now.

But I'm just tired. And sad. Because I wanted answers, but not answers that had no solutions to them.

12 comments:

  1. Just because your symptoms aren't as bad as someone else's doesn't mean you're an imposter. Of course you know that, and our brains are just weird; I am sorry.

    Also, would a wheelchair help you even if you don't "need" one? It should be cheaper than a car (but who knows?). Especially if buses are equipped for handling wheelchairs, maybe this is a way you can still do some of the things you want and love to do without hurting yourself so much. Admittedly, people do have a problem with people getting out of wheelchairs in front of them and it's a pain to have to be an educator.

    Really, I just want to wish you well.

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  2. I am sending you prayers. I really am. So muchpain and you are so brave. I am praying again for you

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  3. What about a scooter that can fit on the bus and has a big enough basket on it to carry your bags?

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  4. I've had CFS/fibro since I was 24. I'm now 56. It hasn't gotten any worse but it hasn't gotten any better, either. I know what it's like to be a scared single mother reliant only on yourself and your painful, sick body. And yes, you do need a car. Hot water (a hot tub) or swimming and massages help a lot as well. (I also have anxiety/depression, colitis, severe sleep apnea, psoriasis, and even more so I know what that's like too.)

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  5. I too suffer from SPD and it is extremely difficult and painful and hard to accept. I am so sorry you are going through this difficult journey. I am praying for you

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  6. I am so sorry for all that you're going through and for having to deal with your body betraying you at a young age and coping with overwhelming lifelong chronic diagnoses, I know the feeling.
    As someone who struggles with stabilizing my thyroid levels (though my thyroid was removed due to cancer) and the many symptoms that come along with hypothyroidism and Hashimoto's, I highly suggest you ensure your thyroid levels especially free t3 are optimal, not just in normal range which the endocrinologists tend to verify (and usually only TSH) but nothing beyond that.
    The thyroid has a huge effect on many of the body and mind's functions and even being slightly out of whack can make a huge difference.
    You mentioned one of your conditions causing "fatigue, sleep, memory and mood issues" - non optimal thyroid levels can cause or aggravate all that and more, including body aches and joint pain.
    Personally, I suffered for years with chronic headaches and body aches (mainly SPD, also triggered by pregnancy) and keeping my TSH suppressed and taking t3 meds (cytomel) has helped tremendously. It's not typically the first thyroid med prescribed and can be expensive, but personally I couldn't function without it.
    Just putting it out there. :)
    Feel better, hope you find some relief.

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  7. oy I only knew some of this. I too have a handful of rare and annoying chronic things and yes, invisible disability is TOUGH. So you're supposed to work less, but also buy a car..... are your doctors handing you handfuls of cash with these diagnoses? Are you prepared to maybe do a go fund me or accept help from friends? Lots of prayers that things get BETTER over time unexpectedly. I limped with a cane from 1998 to 2004 after a botched surgery and since 2004 have been getting better and better--- no more cane and though I'll never run a marathon or even a mile, I can WALK 3 miles with no pain at all through many years of physical therapy. That was such an unexpected treat for me and I pray the same for you.

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  8. Nothing helpful to contribute,I just what to express how sorry I am.

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  9. So sorry to learn of all your suffering. You are a amazingly brave person.

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  10. It stinks that you have to suffer. Your such a vibrant and empowering person whom I enjoy getting to know via your blog. All I have for advice is something I took for my Plantar fasciitis: Hydrangea Root. It isn't a long term solution, but it does help diminish the pain for a few months. In then end, I had to lose weight to get rid of it.

    Hope the pool helps you build your muscles without causing more pain. Thank you for sharing. I appreciate it.

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  11. have you read dr sarno's book and checked out the sarno mehod? I know people whom it has helped tremendously.

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