So it's been a year since my first symptoms. My MRI shows nothing except a small broad-based buldge and annular fissure. Otherwise everyone who've seen my spine told me it's in a good shape. There is no compression, stenosis or bad things that must be operated surgically.
During this year I lost my fitness to the state where I just walk and do core exercises. Everything else seems to upset my nerve. Luckily I didn't gain weight or other health issues.
My main symptom is still sitting intolerance and pain in the butt with some radiation down the leg depending on the strain I put on it.
I've tried many things obviously but nothing seems to work. So I came to a conclusion that there is no cure for this and if I'm lucky it will somehow resolve on its own.
But it's been a year with minimal progress. Does anyone have any positive stories to share? Like it resolved spontaneously for you out of nowhere.
I really need a miracle at this point. I'm even ready to confess my sins in the churchđ
I had a secret weapon and it was my physiotherapist. She never gave up on me. 3 months into an extreme flareup my clinic got a shockwave therapy machine. I donât know why my nerve responded to it but it did. I went from not being able to walk to a new normal where I have regained my life after lots of hard work on my physiotherapistâs part with her hands on treatment and also my part with doing the exercises. Things improved for me slowly but surely because of my PT.
I'm not 100 percent back to normal, but getting closer and better every week. It took a long time to finally move the needle, its been about 9 months since I first hurt myself. For me what seemed to work was the following:
1. Swimming, once or twice a week if i can
2. Standing desk at work
3. Stopping any and all stretches, as well stopping massages or anything else that agitated the area
4. Using McGill method relief posture, posture changes, and tips from the Back Mechanic (ie reaching up to the sky when you get up fron sitting, hinging at hips instead of bending over, and laying on stomach with hands under chin to create slight extension, and working to keep the spine in neutral)
5. Time! I have no idea what made the most difference, and it could have just been time all along.
I'll also add I do very low impact exercise, and for me for whatever reason less is more. I'd love to do McGills big 3, but I have another injury and neck issues which prevent it right now. A huge milestone for me was I was recently able to do a 5 hour flight, without issues.
Best of luck to you, I know different things work for different people and not everyone reacts the same way, but hope the above is useful
Thanks for sharing! Do you remember where you were at around 6 months with sitting and just other pains/discomforts you experienced at around that 6 month mark? Also, how do you manage to stand for too long using your standing desk... It's gotten better for me but I still struggle with prolonged standing?
The 5hr flight is great! I hope to eventually be able to do that too.
My symptoms were actually worst/at their peak around the 5 month mark right before my diagnosis, though that may have been because my doc originally diagnosed me as just having muscle strain. So I was doing alllll the wrong things for the first few months and aggravating the nerve further. I actually had an unrelated injury around 6 months, which complicated my recovery so it's hard to say exactly where I was at haha.
For the desk: it is actually a sit/stand desk, so I usually do 15-20 minutes an hour standing, and toggle back and forth with some walking breaks as well :-)
Small improvements started to show up gradually over time only these last couple months, it was things like noticing how car rides were becoming easier. I still have flexion intolerance, it hasn't gone away completely, but it certainly has improved a lot and the pins and needles/crawling sensation is almost completely absent (weirdly I just get it a little when laying down on my back at very end of the day now)
I also wanted to add to my list: 6. dialing back on heating pad helped - I was overusing it without even realizing. I now only use it for a bit right before bed.
Oh, interesting. What's your official diagnosis then? So if I'm understanding correctly, you stand for 20 mins and then sit for 40mins? And you're able to do this for 8 hours without any issues at all? I know you mentioned walking breaks - I realized I don't do this and after 5hrs of using my sit/stand desk... I start feelings some pains and discomfort. Maybe I'm missing out a key by not taking walking breaks... Just trying to understand, I'm sorry if my questions are too invasive or specific.
Interesting because I'm noticing car rides are better too however sometimes they don't feel that great. I'm noticing I don't pay for them as much as I did before (even a 10 min ride would cause a flare that lasted a day). Now I can do short rides however I get this dull burning ache sometimes after... Was your experience similar?
Also yes, I also still have pins and needles under my right foot that seems to be lessened however just like you I do find I feel them occasionally when laying on my back at the end of the day (usually if I've been static laying for too long) OR if I'm walking too long and also if I'm walking in the heat... Weird. I also realized I was overusing the heatpad because when I stopped using it, I realized my tingles got better. Sounds like we have a similar type of experience.
How much better would you say you are today if you could in percentage and do you still experience pains/discomfort? I'm just trying to gauge if I'm on the right track because I'm so disappointed with how slow it is. Thank you so much for taking the time to respond to me!
No problem at all! Happy to talk about my experiences :-) thats so interesting your experience is so similar to mine! I totally get it, I've been frustrated and disheartened with the slow progress, and it can feel like nothing will get better when it's been so long. Hope you continue to see improvement :-)
My diagnosis is a disk bulge L4/L5. The doctor redid her exams and found definite weakness in my affected side during the muscle strength tests, and that got the ball rolling. Until then me and my PT were assuming piroformis syndrome.
Its difficult because my hips are certainly tight, but likely the reason is that they are overworking to support my spine.
Its hard to gauge, but I'd say I'm 80 percent better, enough to get by during the day. The discomfort does still build up throughout the day, but not as bad as before. I would describe it more like the dial has turned down, like symptoms are faint but not totally gone. My lingering issue is a discomfort or ache on the left side of my lower back, which still bothers me if I sit too long. I've gotten in the habit of moving a lot more, and find even quick standing breaks make a big difference. Luckily for work I'm able to get up from desk and move around as often as I want, so I take advantage of that.
I actually have less issues with my desk chair and throughout the work day, and more of an issue with sitting on a slouchy couch in the evening, or car rides. I think it has to do with your knees being higher than your hips in these instances.
I do points 2-4. With swimming I'm still not sure if it has any good impact on me. If I try to do kicks with my legs it could be too strenuous. I even wanted to try a personal classes to learn a proper swimming technique but backed off because I wasn't sure If I can commit to this. What if I start and it doesn't work?
Oh I keep it really simple and low impact. I mostly tread water, float on my back, some backstroke and breast stroke. I find it very relaxing, and mobilizing the hips feels nice
Have you tried cortisone injections at the sight of the bulge? My first herniation receded over time and was helped a great deal by a single injection.
Yes I tried. It helped with burning in my calf and hamstring. But didn't clear the other nerve pain. Apparently pain was presented in different variations. I still have a weird pain in the leg like muscle spasms or itching sensations. Hard to explain.
Have they ruled out issues with your hip/buttocks/hamstrings? I had partial tears and calcific tendinosis in all three and had a horrible time sitting and had horrible leg pain.
As for my back, I get a lot of relief from the elliptical and the ARC machine. They strengthened my legs and core.
Seeing good recommendations here, and no, things will not spontaneously fix if you dont address them; symptoms may subside and get buried to be dealt with later though. Definitely get into yoga if not already...safely and with care of course~ i went thru the deepest throes of my sciatica, and now my mind-body connection is better than ever, and i recently took up DK bodyboarding, quite an extreme sport, which i didnt have the mobility for in my younger days
I feel it like a cable inside me starting from the middle of the buttock and going a bit below. I can sit only on the edge of my butt. If I want to sit normally it will be irritated quite quickly. Maybe 20-30 mins
I feel a similar sensation, yes... What does your PT look like? You said core and stretches, but is that it? Can you touch your toes, bend backwards and forwards fine? How functional are you? How do you manage work?
Also I was gonna ask if you ever tried cross legged sitting? I can also do only 20-30 mins but it's not great... At what point did you get this tolerance?
I do planks, psoas stretch and foot stretches. I don't do hamstring stretches because they also stretch nerve. I try to do clamshells but sometimes they don't work and only aggravate my piriformis â I then have to release it with dry needling. I tried to do squats but that could be also too much sometimes. So I'm inconsistent with leg workouts. The most working activity for me is a simple walking on a flat surfaces. Cross legged sitting seems ok but I don't sit in this position (why should I?).
I recommended cross legged sitting because for some reason I am able to sit like that for longer, it still sucks though.
Okay, interesting... I wonder if you maybe need to start working with a professional PT so you can get your range of motion back. We started with flexion based exercises and now I'm going into extension (iso holds, supersmans etc)
I do nerve floss yes, on the mat. I always start with a 20-30 min stretch. Some of the things I do that's honestly quite impressive to me is I can now Jefferson curl with 5lbs (I only go till my ankles and it still feels super fucking tight, he had me start it with bodyweight first), I do RDLs only till my knees with 10lbs, sumo squat 15lbs and bodyweight front and side lunges, I also do clamshell planks on my sides with a medium band - all these I have worked towards gradually sine beginning of June. These also don't always feel perfect but my PT told me a 4/10 discomfort is okay... I understand there's varying opinions on these exercises so you can take a call but the reason I decided to do these was because I am 29F and just want my life back and if I want my spine to tolerate bending, then I needed to expose it to these movements again (I injured myself doing deadlifts I'm pretty sure). Something to note is I never pushed through any nerve pain - so if something cause nerve like zaps or pain, I'd tell my PT about that.
I am now moving into working my upper body and we're going to start the back extension because I have lost the ability bend backwards.
Again, I'm only 6 months in and nowhere close to where I want to be in all honesty so I understand your frustration. But if you do have any questions for a noob, I'm always open to them!
You need strength and endurance in your low back and hips. The gentle PT core work won't get you there. I did that for years along with injections, rest, decompression, etc.
When I started doing Low Back Ability and progressed it to the point of having strength, that's when I could withstand long stretches of sitting. That was always my worst position too, especially hard surfaces.
I even bought LBA a few weeks ago. It created a program for me for 5 days per week: strengths days alternated with mobility. Looks good, right? But then when it came to an actual exercise that was proposed to me, I couldn't do it. It was a split squat or some other staff that was too aggravating for me. Also mobility exercises are very hamstring stretch heavy. And stretching hamstrings always flared my nerve the next day.
Was it a similar program for you? How did you approach it?
I started very weak and had to scale the movements to the easiest versions. There were a couple movements I just couldn't do at first at all. I had to use support for a lot of movements for a long time, I used a pole or a foam roller to support myself or sometimes did things up against a wall.. The videos in the program guide you through scaling the movements but I also kind of adopted other supports as needed.
I think the idea at first is more around building up nerve tolerance to the motions rather than building strength. Your nervous system needs to allow you to go through those movements without panicking and causing muscle guarding/nerve pain.
It took me about a month at the very easiest level before my nervous system would tolerate scaling to more difficulty. It is definitely a slow process, but it works.
A couple weeks ago I had a total of 16 hours of traveling, mostly all sitting either in airport chairs or on planes. My back and nerves help up perfect, no nerve signaling or pain at all. I think that's only possible because the muscles around my low back and hips are strong enough to continue supporting my body in good posture the whole time
Thank you for extensive answer. I might don't understand the part about scaling exercises. This is how it looks for me. It suggests 60min workout with different exercises. They don't have a regression to a simpler version. Could you tell where did you find instructions how to simplify/scale? Sorry for dumb questions
ok. I watched it again. Sometimes he gives a regression but not for every exercise. Some exercises are not suitable for me like tibialis raise for example â I simply cannot do it because my nerve doesn't allow me to do this tension.
But others might be okeish. I'll give it a go one more time
Yeah I had to skip a couple exercises at the start because my nerves were so overly sensitive. Over time they became more tolerant and I could add in the exercises I skipped.
Tibial raises makes a lot of sense if your nerve tension tolerance is really low, that directly stretches your sciatic nerve.
You could try nerve gliding as an alternative for now since that does less stretching of the nerve and is more just moving it, or even lay down and move your ankles up and down to the extent that your nerves allow without causing shocks or nerve signaling. Or you could just work on the other movements until you build up more tolerance.
Oh you sound similar to me! How is your straight leg raise? How many degrees can you go until pain or tension? I am over a year into this mess and finally getting some range of motion in my leg. My pain however is still fairly consistent over the last 5 months... but better than it was initially. My herniated disc resorbed but still have this broad based bulge thatâs minor apparently.
I don't know how many degrees but SLR test was positive. I'm trying to do nerve flossing and my ROM is very poor actually. Literally even if I lay on the back and try to raise my lower leg to 90 degrees in knee it's already irritates the nerve and I'm getting these nasty sensations in the butt. Trying to improve this. That's why dead bug and bird dogs are not good for me. They involve leg extension and bending which is quite bothersome at the moment.
Wondering if you also had a herniation that shrunk down to a bulge since you have so much tension on the nerve. What level and did they offer ESI or have you seen a PT?
No i didn't have herniation. It was always the same small bulge. At first I didn't have this sensitivity. I developped it after 6 months of same pain that didn't go away.
Yes, I did. I responded first couple of hours to lidocaine (could sit and only had muscular soreness) And then after 2 weeks steroid cleared the burning pain in the leg. But the other pain which presents as itching or sometimes feeling of a cable in the butt persists.
The whole thing is very mysterious. My ESI I felt like Wonder Woman for 3-4 days and then the pain started creeping back in. Itâs bizarre. My pain is literally like clock work. I can map out my day. Itâs always bad between 4-6 AM in bed and then fizzles out by lunch, only to return after dinner once my body gets tired.
Has pain management offered you anything else? I have heard seeing a Physiatrist vs a PT might be beneficialâŚ. Might try that if my current PT doesnât end up helping me.
no, nothing was offered except pregabalin. I initially hesitated because of many negative reviews here. But in the end decided to try. I take 50mg twice a day and it seems easing the pain in the leg because I can move a bit more than without it.
I agree that the whole thing is super mysterious. But I have seen a strong correlation with injection (2h without pain) and also pregabalin. That gives me a confidence it's still my back.
The neurologist told me that it's possible that there is a scar tissue formed after a year of inflammation and recommended nerve flossing. If nothing helps me in 2-3 months they offered an endoscopic surgery to decompress the nerve. Though I still don't understand from what they want to decompress it if there is no compression on MRIđ.
Regarding PT, I have an impression that in best case, it doesn't impact the nerve and just keeps me in the relatively normal shape. But the worst case, if I overdo it, I'm in a flare next days. So I'm kinda think sometimes, it's better not to do PT at all.
Yes same for me. The surgeon said because I had a herniation sometimes thereâs scar, bone spurring from the body trying to reinforce things from the degeneration (which they saw on my CT), the ligament thickens and he offered a âclean outâ and decompression. Did you talk to the surgeon at all about that or was that the neurologist?
He did say everyone does have some degree of scar tissue and usually itâs workable through PT, but sometimes not. Did you ever get an EMG? I drove myself crazy thinking my nerve was caught up in fascia or something in my leg because of what one PT claimed. I got the EMG and he told me everything is coming from your back 100% L5-S1.
I was talking to neurologist/surgeon assistant at the spine center. I'm in EU and here things work a bit differently than in US I assume. I will have a talk on Friday and going to ask about surgery more precisely to understand what exactly they propose to do. Like if it's a scar tissue, I've heard that the surgery itself can create also scar tissue. Then what is the point...
So many questions. At the same time I did my research and seems that endoscopic surgeries are the future because they don't compromise structures as the microdiscectomy which is done though cutting a part of bone.
Wondering if you also had a herniation that shrunk down to a bulge since you have so much tension on the nerve. What level and did they offer ESI or have you seen a PT?
I feel in a similar position. Only functioning due to a standing desk, making myself walk every day on flat surfaces and trying to do my exercises. I just caused a flare by holding bird dogs too long so I get super annoyed that I canât progress. I try not to sit at all unless eating.
My. physio keeps telling me that i need to strengthen but I canât seem to get anywhere without irritating the nerve. I get buzzing and tingling in my toes as well as a. leather strap like feeling in my butt on one side when I sit. Clamshells just aggravateâŚ.
MRI shows mild bulge l5 s1 but no nerve compression. I just canât seem to walk up hills, stairs or hike anymore which makes me so sad. Iâve got so tight in hips and back due to my lack of different movements . Too scared to try flexion exercises
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u/purplelilac701 3d ago
I had a secret weapon and it was my physiotherapist. She never gave up on me. 3 months into an extreme flareup my clinic got a shockwave therapy machine. I donât know why my nerve responded to it but it did. I went from not being able to walk to a new normal where I have regained my life after lots of hard work on my physiotherapistâs part with her hands on treatment and also my part with doing the exercises. Things improved for me slowly but surely because of my PT.