One of the questions that I have been asked a lot lately, is for me to explain my pain, not just in terms of how bad it is, but in terms of where, when, why I have never said anything before, what am I doing about it, and will it go away? … loads of very valid questions, that take a lot of explaining, depending what they ask and in what order they ask it. So I thought that a post on a general run down of the answers to those questions would be a good idea, so that for people who ask via message or email, I can simply point them here. Then if they have more questions they can still ask, but at least I will have covered the basics!
EDS comes with all kinds of pain. The most obvious is joint pain. It’s not like arthritis pain though (yet!) … If you have ever sprained a wrist or ankle, it is exactly that kind of pain because a sprain is a stretch and damage of the ligaments and tendons in that joint, and sometimes the muscle too. For us when we knock ourselves even gently, we can and do often sprain a joint, and as those tissues would normally heal relatively quickly in a robust person, our sprains take a long time to heal, and some times never do. I fell in January and when I had an MRI on my foot in May, the tendons and ligaments were so angry and inflamed, the radiologist assumed that I had JUST done the injury! And that was with four months of resting the foot!
When I was pregnant two decades ago, I did my lower back, and my right hip. My back seems to be relatively strong with the surrounding muscles as I have been quite active all my life, but as discs in our spine are cartilage, and cartilage is connective tissue, and EDS is a connective tissue disorder, … well, every now and then my back “goes” out of nowhere, and that is the same as any person’s back pain at the very least, and when that happens I am usually bed ridden for a month or so… When my back “goes” that is the worst pain and there is nowhere to hide that! So people usually know about that when I do, but I am good at avoiding the kinds of things that result in my back going and so my back has been relatively OK the last few years thankfully!
Pregnancy produces a hormone called Relaxin which loosens the tendons and ligaments so that the body can prepare to get that baby out! It is needed in the bones in the pelvis and surrounding area, but the hormones don’t know that that is the only place to work, and so it is common for women to feel all their joints get a bit floppy in late pregnancy. Each time I was pregnant the doctors and nurses would all comment on how strong my Relaxin must be and that maybe I produced too much of it, as late in each pregnancy I would get so bad that once sitting it was often nigh on impossible to get up again! It didn’t hurt a lot then, but as I also had very big babies and gained a lot of excess fluid when I was pregnant (thank you EDS!!), the pressure on my hips was huge and once I was done with babies, it felt like the Relaxin never really went away. Doctors told me that because I had produced too much Relaxin, my hips were probably damaged, and that was the only way that they could explain why my hips never fully recovered. All the years since babies, if I sit too long in one spot I still often can’t get up, and on long drives (anything longer than 20 minutes), when I get out the car my hips are very weak and it takes me a while to “settle” in, to being able to walk. I always start off walking VERY slowly and often look like a duck at first as my hips “settle”.
I never made a big deal out of it as there was nothing that anyone could do, and it just seemed to be from pregnancy. Then twelve years ago I very suddenly developed a large growth on one of my ovaries. As biopsies can spread cancer in ovaries if it is malignant, and ovarian cancer has such a low survival rate, the decision was made to operate as soon as possible and to remove the entire ovary and surrounding blood vessels and anything closely connected, and to remove it encased in plastic so that nothing can spread. Enormous care was taken to remove it safely, and everyone was very pleasantly surprised when it turned out to be benign. It was GREAT news, and the main focus was on the fact that I did not have cancer, rather than on what it actually was. The results from pathology were that it was inconclusive what had caused it, but in hindsight, it seems that it was something to do with EDS and growing of excess blood vessels and connective tissue.
The pain from surgery has never gone away. It is a deep, heavy pain, and it feels like someone has stuck a burning hot iron deep into my side right where my hip is. We found the tumour on the ovary because of this pain, and with surgery and removal of the ovary, the pain never went away. There didn’t seem much of a pattern to it, just sometimes I would have a week or two where it just seemed to hurt out of nowhere. It was quite debilitating pain, and so I did talk about it to a handful of close people and had it checked out at my GP a few times. But no one could find the source of the pain. In our family we called it my “Novary” (short for “no ovary”) … I would just say that my Novary was giving me trouble again.
I have had several Ultrasounds in different countries for different reasons over the years since, and every single one has said that “both ovaries look normal and healthy” which is crazy, because I DON’T HAVE a right ovary! Last year they decided to investigate because the pain was so bad that numerous times I DID land up in the ER I was in such agony, and so I had a specialised ultrasound which confirmed that there is NO ovary there, and that ALL of it was removed, but that there is much scarring and connective tissue issues in the area, and it was decided that there is a danger in operating to clear it, because that will only cause MORE scarring and connective tissue issues! So basically there is nothing that can be done and this has been established ages ago, LONG before my EDS diagnosis. (even though still no one put two and two together back then!)
A couple of years after the ovary was removed, I developed a Bursitis in my right hip. No one could tell me why I had developed this incredibly painful thing, (although again, EDS now explains it fully! Bursitis can happen to anyone, but usually from a great deal of pressure over a long period of time. But again, it is part of the whole connective tissue thing, and so multiple unexplained Bursitis is on the list of secondary diagnostic criteria for EDS). If any of you have ever had a Bursitis in your hip, you would know how excruciating it is! I was told that it was just “one of those things” and that in two to three years it should simply go away. I was put on long term pain killers, and both topical and oral anti inflammatories. That was a decade ago and it is not as bad as it was then, but my right hip on the whole is in incredible pain almost every day. Over the past ten years, some days I wake up and feel that I need to take myself to the ER I am in so much agony, but after having so many doctors tell me that there is nothing that they can do for it, I simply push myself to get out of bed and get on with my day! If you have known me for the past decade then this was a huge part of my every day life that I never talked about…
By these two diagrams of both right ovary, and Bursitis pain, hopefully you can see that my right hip has REALLY been struggling! The ligaments are loose and floppy and painful, the Novary has some REALLY bad days and some not so bad days, and the Bursitis does too. The most painful by far and what has landed me in ER a few times is the scar tissue and so on, but the hip ligaments is the most common, as in every day (or mostly night) pain. But you can see here that all three issues are connected!
Right ovary and how close it is to the right hip:
Bursitis in the hips:
So starting with my pregnancies and the resulting damage to the ligaments and joints in both hips, and then followed a few years later by the tumour in my right ovary, it’s removal, and the intense pain from the connective tissue and surgery pain, and then the Bursitis being the cherry on top, the following diagram basically explains my right hip in particular. My left hip has bad days too, but in general it is my right hip. This diagram was found in relation to Bursitis pain, but you can see how close to the hip joint and Novary it is, and why it is all connected and one HUGE painful mess!
When someone asks me what is the greatest effect on my health and/or pain levels that EDS brings me, then up until my foot, this is it! My right hip has not only been excruciatingly painful for the past decade at least, but it is also what sometimes keeps me up at night, and why sometimes I wake up in the morning feeling unable to face a day! It is why every night (even on the rare occasions that I get home at 1am!!) I can’t go to bed without a HOT bath that is at least deep enough to cover my legs and my hips, for a 10 minute soak. That makes a HUGE difference to my pain and I can’t ever sleep without it. If I don’t have access to a bath then I use wheat bags and/or water bottle though they aren’t as effective and I use pain medications to be able to sleep.
The next worst is my right wrist, though while we are on legs, they just hurt all over and ache deep down, from moving during the day. I subluxate (partial dislocation, often felt as a pop and extremely painful) a knee on a regular basis, and when I do I can’t fully weight bear on that leg for a few days… usually my left knee, and I wonder now if it is mostly my left knee because I think that I used to favour my left leg to protect my right hip? I hardly every subluxate my right knee but my left knee goes regularly. So my leg pains are every day, and my right hip is every day, and my left knee some times.
Back to my right wrist. I fell fifteen years ago and landed on my right wrist. It is a LOOONG and VERY painful story which I won’t go into, and many of you knew me through those frustrating years, the surgeries, the years of physio, the 11 months in a cast… it just never ever got better, and there was nothing wrong with it other than the ligaments and tendons! I still only have 90% use of it and it is often painful. After all that STILL no one ever guessed EDS! I haven’t been able to use a can opener or open a tightly shut jar in twelve years!
Staying with the wrist theme, when I fell in January and eventually went into an Air Cast and onto crutches, after ten days on normal crutches, my left wrist “went”. By “went” I mean it completely failed and went into crisis! That is the best way that I can describe it! It is my left foot that is damaged, but my right hip won’t take up the short fall of the left foot and my right wrist is so damaged, so when I went into crutches, most of the weight went into the left hand. And almost straight away it simply fell apart! It is now explained to me that normal crutches would do that to either hand, because my tendons and ligaments are too weak and stretchy to hold the weight. Using them bent my wrists back too far back, and damaged them very quickly. That was now 12 weeks ago, and I still have a lot of trouble with my left hand. It ached all day today 😦
I used those crutches for just over a week, and yet after twelve weeks my wrist is still not healed! So both wrists have pain in them, and the pain can be explained as being very similar to carpel tunnel pain. The nerves get pinched by the enflamed tendons, and the tendons themselves ache all the way up the arm. Sometimes my fingers tingle or go numb and my fingers lock. I am an artist and I spend many hours using my hands. A paint brush eventually pushes my joints way further than they should go, and so after years and years they are no longer strong. I have been wearing Band Aids on my finger joints to stabilise them for over a decade now, but never really said anything, thinking that it is my own fault for using them too much and always being on the go! Now I know why and I will be getting finger splints for them. So my wrists and finger joints often ache, and I am very protective of them!
About 18 years ago we were moving house and I was trying to do everything myself (not ourselves: MYSELF) and was seriously stressed out and at one point I got the worst headache! A week later my husband said this has gone on too long, and took me to a doctor that we could find open on a Sunday. The doctor said he had no idea how, but my jaw was dislocated! I was totally shocked, but he gave me a bunch of exercises to get it back into place, and ever since I wake up most mornings with my jaw out! It doesn’t hurt much, it is more frustrating, but every now and then I try to use it before it is back in and that is excruciating! A dislocated jaw is NOT funny … and I’m going to beat you to joking about me talking too much!! :p
Weather pressure has a huge effect on ligaments and joints, and people with EDS talk about this kind of pain a LOT! It is hard to explain this pain, it is very deep and radiating pain rather than sharp, and it is exhausting living with it! My weather change pain affects mostly my finger joints for some reason, and sometimes I can’t use my hands at all on those days!
This one is a very strange one!: No doctor has ever even heard of this, never mind been able to do anything, and so I stopped telling anyone decades ago! But once I got the EDS diagnosis, and joined a few support groups, I was shocked at how many fellow EDS Zebras suffer from the same thing (to different degrees!) My ears hurt, and my head hurts. Ears are made of cartilage which of course is connective tissue, and EDS is messed up connective tissue. There is no other explanation other than that. But I can’t use head phones, ear plugs, wear a beanie or hat, wear a swimming cap, eye mask of any kind, or sleep on my ears. It is the most excruciating pain I have ever felt! Most glasses hurt my head and wind (even warm wind) gives my head an ice cream type headache! It is VERY annoying!
The last major injury pain right now is my left foot. My mobility issues at the moment are because I can’t fully weight bear on my left foot because of the Lisfranc Injury which I did in January this year, and I am still waiting on my next Orthopod appointment to determine where are going with that one. Surgery is the “normal” route here, but as surgery carries more risk with EDS, and the amount of nerves and tendons and ligaments etc in the foot and the scar tissue issues in healing, they advise against surgery, but at this rate, if we don’t do anything, then that is the end of walking for me! My foot also seems to have good days and bad, but since I have been on crutches full time and a wheelchair for long distances, it is not nearly as bad, though some days and nights it simply aches deep down.
This one is the one that gets me down the most. One of the many areas that are connective tissue and so covered under EDS, is skin. And our gut (from mouth to the “other” end!!!) is included! So many suffering from EDS have all kinds of gut and bowel problems. I don’t suffer as much as most in this way and for this I am truly thankful! I do however have many many mouth ulcers. These are often, huge, and deeply painful, especially when eating, laughing and talking. Sometimes I am truly miserable just from mouth ulcers! In the same way, many of us have allergies with our sensitive skin, and Oral Allergy Syndrome is one of them, and that is something that I suffer the full spectrum off! It is SOOO annoying! In case you didn’t already know (and most who know me do, but maybe you have forgotten), I am allergic to ALL uncooked, fresh fruit and vegetables. That means no salads, no fruit, no nothing. And I am NOT happy in the kitchen, so it is a MASSIVE pain in the bum, (not to mention an energy waster for me!!) to have to cook everything, think ahead, be prepared, take my own things with me some times, and it makes it even harder to avoid the bad stuff when eating out 😦
There are various injuries and sprains that have never fully healed, both of my big toes included, and any time that I subluxate a knee or an elbow, (I only seem to pop those), but for the most part, the long term pain is my right hip and m left foot.
I hope that this goes some way to help explain the pain 🙂