Ninapearl -- An idea for my scoliosis twin

at this point, i'll try literally ANYTHING!! thanks for this suggestion, i'll dig through my drawer of numerous dr. scholl's products and see if i have anything that might suit the purpose. happy to know this worked for you, i'll be interested to know if it continues to help!

sorry to say, the trigger point injection into the quadratus lumborum muscle (which is the root of my problem) i got a couple of weeks ago at the pain clinic failed miserably. it seemed to lessen the pain for a couple of days but i'm pretty much right back where i started. it's just so frustrating!!

wouldn't it be funny if, after 2 series of spinal steroid injections plus the trigger point injection and the endless hours of sitting in doctors offices all to no avail, was cured by a simple shoe insert!?!

i have a follow up appointment with the pain management specialist on 5/30. i don't know what his next step will be. he did mention botox injections but said medicare rarely approves them and i would imagine paying out-of-pocket would be prohibitive.

i did see a very interesting segment on a recent news show about how some doctors are treating low back pain with lidocaine infusions.

keep me updated!!

Hi - May I be your scoliosis triplet? I had x-rays done recently, and when the technician saw my lumbar curve she said she was surprised I was able to walk. Truth is, walking hasn't been easy for some time, and standing is the same.

A physican therapist advised me to wear a heel lift in my left shoe some years ago, and that was helpful. I learned, though, that sometimes I needed less of a lift, and since then I've learned that sometimes I do better without any lift at all. I mentioned this to the PT, and he said this is common.

My scoliosis has gotten much worse in the past couple of years, and is accompanied by shortness of breath, some of which may be due to the thoracic curve of the scoliosis. I've lost 4" in height. Right now I'm trying to evaluate the risks and rewards of using my riding mower. I really enjoy it and would hate to give it up, but I suspect bouncing around on the bumps and dips could worsen my lumbar curve. Maybe I'll try mowing the more level sections myself and enlist my oldest grandson to do the others. He'll be 13 this summer, and I'm sure he'd enjoy driving a machine. :-)

Alisande -- Ack! Another sufferer! Of course you're welcome to join the 'club'. Like you, I've lost inches -- from 5' 6" to 5' 3". I used to strive to stay above 100 lbs. but am now trying to maintain 90 lbs. My spine is pushing the front of my ribs at my 'innards', especially when I bend forward. I have a big lump of scar tissue from surgery for pyloric stenosis that complicates that.

Ninapearl -- My experience with injection was bad. Not only didn't it help, I spent eleven nights walking the floor until the pain subsided. (Could be because the doctor decided to also 'break up a muscle knot' he observed.) I would only try that again if I had assurance that some doctor was *expert* at this -- not just giving it a try. For now, I'm coping with four Tylenol-4's daily and a lidicaine patch overnight.

The heel insert is still working. IDK what I'll do as the angle of scoliosis worsens. Maybe a PT would have ideas.

I, too, have scoliosis and have had it for many years. I was scheduled for surgery because it is so severe. It was going to be a 14 hour surgery stretching over 2 days. It is the type of surgery where they fuse the entire spine together from the neck to the base. I backed out last minute. The risks were too great and I would be in a wheelchair, but my back would be straight. LOL. I can't do much and just sit in my recliner all day. I use a walker to get around. I don't go anywhere except doctor appointments. I don't even go outside. I am prone to falls because I am so twisted. Poor DH has to do everything. I hate my scoliosis.

@Alisande so sorry you're suffering, too.

i was always 5'5" throughout my adult life. they usually just ask and that's the answer i give but i haven't actually been measured in a very long time. i have an appointment for regular blood work at my local clinic soon, maybe i'll ask to have my height measured then.

the injections i had were pretty precise, done by an ortho dr. and guided by x-ray so i'm confident he hit the right spot. they just simply were not effective at relieving the pain which was a very big disappointment! same thing with the trigger point injection, it was x-ray guided.

i had to complete 5 weeks of PT before the initial MRI would be approved. all PT did was make my pain worse and did absolutely nothing positive for me. another big disappointment but according to both the ortho dr. and the pain management dr., this isn't unusual.

re: mowing...DON'T DO IT!!!!!!! last sunday i was feeling well enough and thought i'd try mowing the 10 acre pasture out in front of my house. i use a tractor with a shredder attachment and also wore the back brace i got from the ortho dr. the ground is all sand and very uneven so there was considering bouncing. i got about half done and decided to quit while i was ahead (or so i thought) and finish in a day or two. the next morning was sheer torture, it took me 30 minutes just to stand upright in the morning and the pain was extreme. i left the rest of the pasture and will have my lawn guy do it the next time he's here. i won't make THAT mistake again!!!

@chisue i have been reduced to 4 tylenol arthritis capsules/day, daily tramadol which i hate taking and a muscle relaxant prescribed by the pain specialist. those things in combination are keeping me upright. because i have blood pressure issues, i'm not allowed to take any anti-inflammatories. the pain specialist also recommended massage therapy so i've had 2 sessions so far. it does make things feel better, i plan to continue that every couple of weeks.

i have a pretty high pain threshold. after 40 years of being slammed around by 1200# horses and for the past 16 years since i lost my husband i have done tons of very physical work (fencing, tree trimming, hauling firewood for campfires) but when i think about doing those things now, i cringe. it's been hard for me to admit my limitations and this current pain has reduced me to tears more than once.

i used to walk a LOT but that aggravates the pain. just doing poop patrol in the yard, walking for 10 minutes, puts me in my recliner with the heating pad every time. thankfully, i have access to the county fairgrounds 10 minutes away so i take my dogs there pretty much every day and turn them loose in the 4-H horse arena. i take my kindle with me, sit in the van, and read for an hour while they play and wear themselves out.

Ninapearl, what a great solution for the dogs! I've wanted a dog so badly ever since the last two passed on over 10 years ago. My main reason for not getting another was an inability to give them sufficient exercise. Back then I wasn't feeling this crippled, but even regular walks were seasonal on my icy dirt road. I didn't go for an invisible fence because of the expense, but I wish now that I'd done it. Freezing my meat, chicken, and egg scraps and bringing it to the animal shelter for the dogs, which I've done all this time, feels good but doesn't do a thing for my longing for a dog companion.

I learned about my scoliosis when I was 37 (I turned 81 last week) when a surgeon pointed it out to me. But it must have been very mild at that point. I didn't think I looked crooked and it didn't hurt, so I didn't give it another thought until much later. I have a feeling things got much worse during the seven years I cared for my husband, who suffered from dementia. So many times I did a yoga posture, sitting sideways on a straight chair and twisting my spine, in an effort to release the muscles on my left side that felt as though they'd coiled up. Knowing what I know now, they probably had coiled up in response to my flawed spine and the extreme tension I was feeling. It's possible my curves were exacerbated during that difficult time.

Caflowerluver, I don't blame you for not getting the surgery. I belong to a scoliosis support group on Facebook, and the recovery sounds long and grueling.

I agree, it's hard to accept our limitations. At my age and beyond, my dad was still riding his bike and going bowling. I always thought I'd remain active too, but not everything we envision works out quite that way sometimes.

If y'all are huggers, I'd like to send you all hugs!

thanks, rob! i'll take that hug as long as it's a gentle one!! ;)

@Alisande yes, it's a great solution and i'm so lucky to have it! nothing goes on at the fairgrounds until late summer when the 4-H/junior fair is in full swing so it's accessible to me most of the time.

how nice of you to donate to the shelter but i totally understand how it isn't anything like having your own companion. i don't know what i'd do without my hooligans, they are the reason i get out of bed most mornings. i'm 73 now, i've been rescuing danes for 16 years. these 2 will be my last. at some point in the (hopefully) distant future, i'll probably get a cat.

i'm very interested in the facebook group you mentioned. can you tell me the name of it, please?

i feel lucky that this issue came on late in life, unlike yourself. i have been riddled with osteoarthritis for the past 25 years (i had bilateral hip replacements 24 years ago, still going strong). because the cause of my back problems is mainly arthritic in nature, doctors have all told me that surgery isn't an option for me. in a way, i was glad to hear that since i had back surgery 13 years ago and the recovery was, indeed, brutal. i just wish there was a simple solution to this pain for ALL of us sufferers!!

Thanks, Rob! I'm a big hugger . . . that is, I'm not as big as I used to be, but I still like hugs. lol

Ninapearl, the Facebook group is called Scoliosis Support Group. I hope I just created a link, but if not, here's the URL:

https://www.facebook.com/groups/765072896842063

Facebook probably has other scoliosis-related groups; they have no shortage of support groups. I've seen a wide range of ages posting on this one.

Alisande, thanks so much, i'll definitely check it out!

caflowerluver -- My sympathy to you! I can't blame you for skipping the surgery. It's just so darn HARD to be unable to DO things. My late MIL rarely complained, but was furious abut being dependent due to severe RA. I'd offer to help with the dishes and she'd say the warm water was going to help the pain in her hands.

rob -- Hugs received. Thank you!

There's no surgery in my future. I'm 83, with multiple myeloma. When I was diagnosed with MM in 2018 the outlook was six to ten years. I was glad I wouldn't have to suffer my worst fear: losing my min d.I could just stop treatment for the MM. La-la-la! The scoliosis was diagnosed in 2019. It's really *raced* along. The pain clinic at the cancer center has tried me on various things. Last one was methadone. Zip results. The T4 is death to kidneys, but the only thing that helps. The heel lift has been a surprise aid.

Alisande -- I don't have Facebook. Maybe you'd relay any big discoveries you see there?

Here I'd gone all my life thinking scoliosis was a congenital defect!

Chisue, I'd be happy to relay any discoveries. I don't look at the group postings every day, but one thing I learned (but haven't yet put into practice) is that anti-fatigue comfort mats, such as those sold for the kitchen, can help with standing. One reason why I haven't bought one yet is that there's such a range of brands and prices. Many have excellent reviews on Amazon, so I suppose I should just pick one. I still like to cook, and I could really use something that makes standing in the kitchen less painful.

Quite a few of the discussions are about surgery and recovery, which doesn't apply to us. And many of those posts are from parents whose children have scoliosis. I pop into the Reddit scoliosis discussions occasionally too.

Thanks, Alisande.

When I saw a spine surgeon five years ago, one of his questions was whether my pain was worse when moving or when standing still -- standing being worse indicative of scoliosis.

Before meeting the doctor that day, I was in a bathroom stall when I heard a familiar sound. A woman at the sink was hissing through her teeth -- the sound of contained reaction to pain that I make myself.

Interesting, Chisue. I've noticed that as awkward and often difficult as walking can be, standing still is worse. Here's another tip that I learned on my own. It might not work for everyone . . . we're all different, and the types of scoliosis can differ too. I do this when I've reached the end of my tolerance and need to lie down, but it's not a good time to do that.

If I stand at the side of my bed, facing it, the top of the bed is more or less level with the bottom of my torso. I bend forward, turn my head to the side, and rest my whole torso on the bed, my toes still on the floor. I relax and take a deep breath. It hurts. I exhale and do it again. That hurts too. But I repeat the deep breathing, consciously relaxing, and soon it stops hurting. You can stay in that position as long as you like. When I'm done I use my hands to push myself back up, and I find I'm standing a little taller, with noticeably less pain.

Remember how hospitalized Covid patients were turned on their stomachs to make breathing easier? I have shortness of breath, possibly caused at least in part by the scoliosis, and this position does indeed make it easier for me to breathe. I think the whole process relaxes the muscles that tighten around our scoliosis curves. If anyone tries it, please let me know if it helped you.

I should probably mention that I breathe diaphragmatically, which expands my upper abdomen. Chest breathers might have a different experience. It might not hurt, for one thing.

I too have scoliosis, but my DD has it worse. I feel so bad for her.

Standing is a killer. Takes me forever to clean veggies as I have to stop and lay down for a few minutes.

Good luck to all!

Alisande i tried your method yesterday and it did, indeed, help some with the pain for a while. standing for me is the worst as is walking any distance. if i'm shopping, even if all i need is a roll of paper towels, i have to take a cart with me to have something for support.

i checked out the facebook page and joined but haven't delved into it yet. it does appear that it's geared toward surgery/recovery so i'm not sure how much information i'll get from it. i do see SO many people who are so much worse than i am. it hurts my heart!

i am not sure how much of my own pain is due to the actual scoliosis or if it's a muscle issue. the pain management doctor isolated the most severe pain to my right quadratus lumborium muscle. i've been doing some stretching exercises every day and have had 2 massage appointments with limited success. the trigger point injection i had 2 weeks ago was a miserable failure. it's just getting more and more frustrating!

the back brace helps and i wear it for the first 30 minutes or so every morning but the pain dr. told me i shouldn't have it on more than 3 hours/day as overusing it will weaken my core muscles.

Ninapearl, I'm the same way when it comes to standing and walking. Some (maybe all?) supermarkets have a slight grade in the parking lot, so that we're walking uphill to enter the store. Grabbing a cart in the parking lot has become a necessity.

This month I met friends for lunch in a town 45 minutes away. The plan was for us to visit an art gallery afterward. Anticipating a parking problem, I put a cane in the car for the first time. I was glad I did. Even so, after lunch, walking back to the car, I realized I would not be going on to the art gallery. I'm glad I didn't push it. My friends stayed there two hours, and no way could I have done that.

My other recent outing was a lesson learned. I attended a lecture at the library that was scheduled for one hour plus a Q&A period. Long before the one hour mark, I was so uncomfortable. Couldn't wait to get out of that chair, and did so before the Q&A concluded.

i am not sure how much of my own pain is due to the actual scoliosis or if it's a muscle issue.

Don't you think the two might be related? When part of the spine is out of place, I believe it can cause muscles to react in a way that causes pain. I had x-rays taken earlier this year, but they were taken lying down, which was a mistake. They don't given an accurate representation of what goes on when I'm standing up. Frustrating, as I try to avoid any unnecessary radiation.

The torso relaxation sounds good! I'll try it.

The spine surgeon I saw insisted on taking Xrays in his hospital (Rush in Chicago). They were indeed *standing*. Anything else makes no sense.

I can commiserate about low tolerance for extended walking/standing...even sitting for very long. I've lost so much weigh that I sit directly on my pelvis. That started years ago when I'd take a pillow to sit in the stands at DGS's little league games. DH usually accompanies me to the grocery now, to load/unload the car. He'll run to the library, PO, whatever, then 'come find me' before I'm checking out.

I can't always tell exactly what is dragging me down. Age, the MM, sociliosis. I had swollen glands and a whopper sore throat last week, then the shingles in my eyebrow. Enough already! I'm sure the grandkids don't 'get' why I'm not 'up' for much, and that is sad.

But better today!

Alisande yup, i always grab a cart in the parking lot.

oh, no doubt the QL muscle issue is related to the scoliosis. what's frustrating for me is that since i'm not a candidate for surgery, and nothing else so far has been much help, i don't know what the next step will be. i'll find out at my follow-up with the pain dr. i abhor the idea of taking opioids on a regular basis. i try to only take the tramadol when i know i will need it or i've already overdone it.

yesterday, i went to the city to take my grandson shopping for a new bike. come to find out, my son raised the seat on his bike and it works fine so he won't be needing a new one until late summer/early fall. BUT, we decided to hit the sporting goods store for some new Legos. this place is 3 stories with row after row of Legos so we did a LOT of walking. while i did have a cart, i forgot to bring my back brace with me so this morning i was seriously hurting. i'm spending another day in my recliner with the heating pad!

a cane used to help me but i've graduated to a rollator. i do take it with me when i know i'll be doing a lot of walking and would have taken it yesterday but didn't think i'd need it. big mistake! if i didn't have it with me during grandparent's day at my grandson's school recently, there is no way i could have lasted 3 hours of walking with very few opportunities to sit and rest!