EDS lower back pain/ muscle twitching

[KAGarcia]

Hi. Does anyone have muscle twitching with small fiber neuropathy? Also, does anyone suffer from the l5-S1 joint or SI joint on lower back? I struggle walking long distances and rising from a seated position.

[Hidden]

I have all these symptoms exactly as you describe but I don’t have a formal diagnosis of EDS. Rather I have Sjögren’s and Hashimoto’s. My neuro physiotherapist has recently confirmed that my knees and arms are hypermobile. I have found that I can now rise better from seated position - not sure why as I do have a herniated L5/S1. But what I experience is that my feet and the rest of me have lost a lot of sensation and my knees bow backwards so I have to think hard about them when I’m walking. Standing still for any length of time is very hard so I now have a fold out perching stick I carry with me if I have to stand and wait for any length of time at all. This really helps because I can use it to feel the ground in front of me so it gives me more confidence.

My main need is to lose weight around my middle now and I’m going to buy an exercise bike for cardiovascular exercise.

[KAGarcia in reply to Hidden]

I have these exact symptoms. I walk very carefully so that I don’t twist my ankles. I don’t wear high heels anymore. I use hand braces 24/7 and ankle brace socks and use knee braces when the pain is too bad. I’m getting a second opinion from a Neuro surgeon to verify that my L5 - S1 is normal wear and tear and it’s just the hyper mobility of my SI joint that is causing all these terrible issues while walking or sitting or standing in one position. The muscle weakness and hyper mobility including the 24/7 muscle twitching is driving me crazy. I just need a firm diagnosis so I can reach out a center of excellence and try to move forward. Right now because I have a 2 year old I have to remain active. I try the older adult classes at the YMCA because they are gentle on my body and I know I look Odd in these classes but the older active adults can outdo me in everything! I am currently on the waiting list at Baylor to see a geneticist for CTD/ EDS.

[Painmanagement7474 in reply to KAGarcia]

Hi I'm recently diagnosed and have pain in my feet, knees and back, along with twitching muscles and an unstable SI joint. I've never even considered that the joint was due to my hypermobility as my surgeon has manipulated it 3 times but it always goes back curled under and causes me severe pain. I'm being referred for nerve testing, but honestly feel that as my symptoms are so varying it's hard to describe them all to the right people at the right time. Can i ask if they've advised any treatment for your SI joint ? i also have a 19 month old and i'm finding it very hard most days, but i need to stay active too as i literally have no choice. I have 2 walking sticks for my bad days, but hard to use when my little one is with me. I also have numbness to the left of my spine and areas in arms and legs that did not feel the needle test. my knees sound like crackling and make stairs extremely difficult. Where do you live ? is it UK ?

thanks and nice to chat to someone else having similar symptoms with a young one to care for.

[KAGarcia in reply to Painmanagement7474]

Wow. Our symptoms are very similar. I live in the U.S. My daughter is two years old so it is imperative that I stay as healthy as possible to try and keep up with her and the demands of just living. 😔but I use KT tape for SI joint and a posture correcter to help keep my back aligned and pressure of my lumbar. I use a lot of braces and ibuprofen and stay off the hard core painkillers. I also refuse to take Gabepentin for the small fiber neuropathy. I eat 70% organic and am now starting physical therapy for knees and use a hand therapist as well as chiropractor. The Chiropractor helps when I am miserable in my back from walking crooked due to pain in ankles. It’s a lot. I especially hate my hands because 24/7 bracing is not fun with a toddler.

[gillianTS in reply to KAGarcia]

Teeny little tip I used to help me stop flicking my knees back was to walk with a slight bend in my knee and do the same when standing.

Use flattish pillow behind the knees when laying legs out flat in bed etc. Take shoes off when travelling in a car and put cushions behind knees and feet on cushion.

Use Kinesiology tape half way up the front of the foot and half way up the front my legs at 50% stretch, help stop your ankles dropping forwards too much, I have major issues doing this in bed and using tape really helps.

Also use long pillow in front of me when I lay on my side (left) to stop over extending my right arm across and out of bed straining my back and creasing my sternum.

Gillian 🙂

[Yogibear11 in reply to Painmanagement7474]

If you feet are sore it might be because you have flat feet as most with eds have and orthotics are great. They also help align your spine so less pain there

[Yogibear11 in reply to Hidden]

I found that with an exercise bike a recumbent type is easier on your back but it still hurts my knees bad as they extend back, so i no longer use an exercise bike

[Lulububs]

YES!!! I just had mri after 2 years of lower back pain and it was the l5-s1 vertebrae out of place. Started osteo and its more or less gone.

I have alot of rib pain to so he deals with that to.

I had a ehlers assessment other day and it turns out im at top

Of spectrum but i dont suffer with all the ones that are common??weirdly

[KAGarcia in reply to Lulububs]

Thank you for your extra input. I’ve decided to get epidural shots to make life more comfortable. The back pain is just intolerable at this point. I can handle all the pain in knees and ankles and limited use of hands and weakness and the blurry vision and etc ... but NOT back pain. This pain is driving me mad.