Starting questions. What is happening with me?

[DoASCV]

Hi there, I am new to this site and am looking for some advice.

It all started around the age of 8-10 ish when I was getting painful feet from a lot of walking around. The pain would spread to my ankles, knees and even thighs if I kept going. This would often cause severe swollen feet and days off school because I couldn't walk on them due to being so painful. I went back and forth to the doctor who ended up diagnosing me with joint hypermobility syndrome. I was just told to live with it really as the little bit of physio I received did nothing. I have built up a slight tolerance to this since then, but it hasn't solved my issue. I did have bunions on both feet removed at the age of 18, which means I can wear shoes better now, but still get sore days and some pain 6 years later. Within the last 5 years, I have been diagnosed with IBS after constant nausea and diarrhoea. I now take immodium at times for that but try to avoid my main trigger 'sunflower' (oil, lecithin etc) at all costs. However, my main concern is what has been affecting me the most, especially over the last 2-3 years which is fatigue and the stiffness/pain. I struggle to wake up most mornings when my alarm goes off even after getting a good night's sleep. It hurts me to sit up as I feel very stiff and moving hurts. I have to move past all this just to go to work and get my daily activities done. I'm in pain generally throughout the day, but once I notice it, that's when it hurts. I'm consistently tired and I can be tired from just walking up the stairs. I'm 24 and I know this isn't how it should be. I've been to the doctors yet again, and I have been on B12 injections for almost a year to no positive effect. I had an appointment with a rheumatoid doctor who poked and prodded me recently. He confirmed my hypermobility though not on the syndrome level, but I think that is because I struggle with movement at the moment. He sent me off for blood tests and the only thing to come from that was slightly low vitamin D levels in which I'm now on tablets for. He asked about my family history and the only thing I know of is that my aunt has fibromyalgia. From the symptoms I have, it does lean towards that way for now, but I was wondering if it could be something else? I'm due to have a full body bone scan for any inflammation in my joints, but is there anything worth trying that they may not have come up with yet?

Sorry for the long essay, but I've tried to put in all the information I can think of for now and appreciate you all taking the time to read it. I'm grateful for any and all suggestions, even just things to do in the meantime to help me feel more awake.

Thanks

[LeighBlyth]

I've written a fair bit about my pain and how I've healed by learning to use my "5 main muscles of movement" - have a read of my other posts.

My body was wrecked, my muscles and mind stressed, I was stiff and sore and didn't move well. My range of movement restricted, with pain and tension all over my body. A whole host of symptoms over the decades. My body misaligned and unbalanced.

As you describe, pain somewhere (i.e. your feet) causes pain throughout the body, a chain of misalignments when your body isn't balanced.

The way I healed was by learning to use my body better, focusing on the "5 main muscles of movement". Starting with my Base-Line:

Pelvic floor - Base of the body

Rectus abdominis - the body's central line.

Look at some anatomy pictures and find these muscles on your body, think stronger and longer with every in breath - contracting your pelvic floor muscles and activating your rectus abdominis muscles section by section from pelvis to chest. Using the roll-down action as feels comfortable.

Then think about:

Gluteus maximus (big ass muscles) and rectus femoris (like a pole down the front of each thigh aligning hip and knee joints) of each leg working together.

Trapezius muscles - like a blanket of muscle from mid-back to back of the head, shoulder to shoulder, that should be smooth and free to move in all directions.

Focusing on these muscles awakened my sense of proprioception - being conscious of my sense of position and movement of my body, Feeling the linea alba (between the rectus abdominis muscles) as my primary guide of body alignment, the nuchal & supraspinous ligaments (between the trapezius muscles) our secondary alignment guides.

This is worth trying.

It's not a quick fix, but working towards alignment and balance in my body has allowed me to release the pain "stored trauma" my body was carrying around.

[kushami36]

Hello DoASCV,

I don't have anything specific to answer you with, but in the last few years the Ehlers-Danlos Society seems to have been doing an excellent job putting out educational resources for patients and medical staff about hypermobility disorders. They are working very hard to get doctors educated about this topic. It seems that there are already a lot of physiotherapists out there who are familiar with these disorders too.

As you posted a year ago, even in that time the society has been working hard, and you may be able to find a more helpful and supportive doctor and perhaps a physio to work with you.

Maybe have a look at their resources and see if you can get onto a more helpful team. Also Facebook can be a good source for recommendations for specialists and physios in your area.