If It's Not One Thing, It's Another!

[janiedelite]

3 and 1/2 years ago, I was a passenger in a bad car accident that ended up sending me to over 100 physical therapy visits and 2 hip surgeries over the span of 2 years. During that time, I limped severely. Also, I braced myself prior to impact (I saw the other driver speed through the stop sign) which is what caused my hip injuries but I believe I injured my SI joint as well. With the help of PT throughout 2008, my SI pain is much better but still flares with any moderate exercise or activity, especially if it involves flexing my hip upward. During severe SI pain, I rest and take ibuprofen and occasionally 1/2 a vicodin. The problem is that my SI pain is causing pain down my leg, into my groin, butt and lower back and really limits any weight-bearing activity when it's bad.

I've had probably at least 30 x-rays, but also several CT scans, 6 injections to my hip under flouroscopy, and a bone scan. I know I probably need a cortisone/lidocaine injection to my SI joint, but I really don't want the radiation!

The pain is affecting my POTS because I can't sleep soundly and I can't walk much at all. The longer I lay down, it seems that my POTS fatigue gets worse and worse. The pain also causes stress, making my other POTS symptoms worse as well.

I'm just so frustrated... I do the PT exercises and stretches, we just bought a new mattress in case that was contributing, I'm just tired of feeling broken and I'm only 36. I probably need to ice more, so I'll do that. My chiropractor is helping too and I see him weekly. Maybe I should schedule an appt with my orthopedist? I'm sure he'd be thrilled to see me again .

I imagine that some of the EDS/POTS patients here can relate. Does anyone else have suggestions for dealing with chronic SI joint pain?

[mkoven]

OMG, yes. What a nightmare. what has helped me (though I've damaged the joint so that it will never be "normal" again)

-si belt (serola). I also have a custom brace I wear on top.

-learn to tell when my si is out, and learn to get it in. Adjustments are pointless from others, as I slip out ALL day long. I have a couple different maneuvers. And they've changed as I've healed. there is no one technique that works for everyone, but you have to make sure that the joint is aligned in the back, and at the front by the pubis.

-try to make sure I stand, sit, walk symmetrically

-stretching and releasing hip flexors, piriformis, quatratus

- strengthening gluts and glut medius.

Good luck!

[janiedelite]

Thanks, Mkoven! I think I'll ask my chiropractor or my friend who's a PT about the serola belt. Like you, it feels like within a day or so after getting adjusted by the chiropractor that I'm out again. I do need to strengthen my gluts. I appreciate all your tips!

[Noreen]

mkoven advice is excellent. A short version of the Alexander Technique might help also - when walking (even if all you can do right now if walk to the bathroom) visual a string running up your spine pulling up at the top of your head - if you keep this balance and control up while walking it helps strengthen everything.

What helped me after an extended period of deconditioning is a recumbent bike - I started with just 2 minutes, worked up to 3 minuted tid and now do 5 minutes tid.

[flop]

If you have instability of the SI joint then I'll back the suggestion of a serola support belt. I dislocated my SI joint last summer when I fainted and fell backwards down a full flight of stairs. After a lot of exercises and pain killers my physio suggested a serola belt. My right leg feels much stronger with the belt on and I can stand up from crouching without using my arms to help! However the physio did advise me not to wear it too much.

Flop

[janiedelite]

Thanks, Flop!

[tilly]

I have had a bad flare up and i could not think what caused it, only that i lay on my stomach and i know this makes things worse, i don't know why that is .....

but i havn't been sleeping due to painfull left hip and i can't lay on my right side either because i have a hiatious hernia and this causes a lot of pain, i can not get comfortable at all, very frustrating and tireing .. but my SI is really bad and i am having to try and keep some mobility by using my crutches again, it feels like broken glass when i sit, all around the pelvic areas ... i get so fed up of one thing after the other ... seems we are not meant to have any peace ..

[janiedelite]

Oh tilly, that sounds so painful! I was using crutches or a cane for 2 years because of a hip injury and I remember how I could NOT sleep comfortably in any position. I hope your flare eases soon.

It ends up that it's not my SI so much, as my L5-S1 joint. But I'm also having radiculopathy from areas of other lumbar, thoracic and cervical origin. I don't have EDS, but I've had these types of pains since my early 20's. I only have a couple areas of mild nerve impingement. I've been a passenger in car accidents twice, which have caused a lot of the pain. But during times of intense pain like this I wonder if there is validity to a suspicion of underlying collagen/connective tissue disorder (my dermatologist/GYN believe this to be the issue). I've been to a rheumy and been tested for everything but it's negative so far. I asked my orthopedist about EDS, and he says I don't have it. I'm just so tired of the pain.

I'm trying to just resign myself to being painful and trying to find ways to live with it.

[the4richards]

Reading your posts has made me realize what a baby I've been lately. You all have so much you're going through and you still have time to "help" each other through the every day relentless ordeals of your situations let alone getting through them yourselves.

My problems are nothing compared to what most of you have and I pray (don't know if I can say that in the forum), but I am and will continue to do so for all of you. You are inspirational. God bless.

[janiedelite]

Hi Looking,

Thank you for your kind words and for your prayers! I'm thankful for this forum that gives us dys patients a place to reach out, comfort, and be comforted.

[Noreen]

Oh tilly, that sounds so painful! I was using crutches or a cane for 2 years because of a hip injury and I remember how I could NOT sleep comfortably in any position. I hope your flare eases soon.

It ends up that it's not my SI so much, as my L5-S1 joint. But I'm also having radiculopathy from areas of other lumbar, thoracic and cervical origin. I don't have EDS, but I've had these types of pains since my early 20's. I only have a couple areas of mild nerve impingement. I've been a passenger in car accidents twice, which have caused a lot of the pain. But during times of intense pain like this I wonder if there is validity to a suspicion of underlying collagen/connective tissue disorder (my dermatologist/GYN believe this to be the issue). I've been to a rheumy and been tested for everything but it's negative so far. I asked my orthopedist about EDS, and he says I don't have it. I'm just so tired of the pain.

I'm trying to just resign myself to being painful and trying to find ways to live with it.

thankful-

My right hip and L5-s1 were injured in a car accident in 1990. I wore a tens unit for almost 15 years which helped with the pain. I have hypermobility so it more than likely contributed, along with the initial injury, to my developing spondylisising spondyloslisthesis for which I had spinal fusion in 2008. I understand what you are going through and I totally sympathize. One of the therapies I found beneficial was water therapy in particular aqua jogging - where you wear a buoyancy belt.

Heck, two days after your last post my left SI joint dislocated and I said to myself "my goodness you are getting too involved if this happens by suggestion." But got that back, with residual soreness, my right hip went out the next day and today my left knee went - I must be going through a new connective tissue phase. BTW, I was diagnosed with Benign Joint Hypermobility Syndrome (the rheumatologist's version) in 1997. I mentioned Dr. Grubb and how he saw a connection with NCS and hypermobility and I actually think she might look it up. (I will bring her an article anyhow.)

Pain is a valid symptom/disease in its own right and you deserve to be treated for it. While doing everything you can to reduce and/or minimize it, there is nothing wrong with judicial use of narcotics when needed.

All the best,

Noreen

[RIfainthearted]

I've been treated for a herniated disc and SI joint pain. The slipped disc caused great pain in the lower back and it radiated down the buttocks and back of my thigh. I couldn't sit or lift my leg. After 2 months of bed rest (when I was 17), they removed it.

I was treated for SI pain a few years ago. Months of PT, which entailed electric stim, massage, exercises to build up my core and water therapy. I had gotten so used to the pain that it wasn't until the field of pain started shrinking that I realized how abnormal it was.

When I saw the ortho for the SI pain, I assumed it was another disc. He had me bend over, lift my legs, bend side to side and none of that caused pain. He then pressed the SI spot and bam- the pain arrived.

I was fitted with a brace after the disc surgery and whenever my back acted up, I'd wear it for a while. When things get really bad- exercising in water is the only thing I can tolerate. The one medication that worked for me with the SI pain is Diclofenac. I think it's a prescription anti inflammatory. Hope some of this helps- Suz

[janiedelite]

Thanks Reen. Wow, you sure CAN empathize! I had a massage today by an LMT (never had one before, I'm just trying everything prior to going back to the ortho). She said my hip was so messed up that she didn't know where to start. She did very mild myofacial releases on a few areas, mild stretching, and was just afraid to cause further pain. Oh well. It sounds like the hip is the problem again with the back issues stemming from that. I asked her if I was standing up straight and not favoring the bad leg and she said anyone could see I was so crooked.

Thank you for your encouragement to get pain relief. I'm just frustrated because I take maybe 1/2 a vicodin a day for my burning skin pain, a whole pill on the worst days, often none at all, and now it's something else that requires medication. Argh, matey! I hope your issues settle down soon! Thanks again, so much.