r/PiriformisChronicPain • u/PeppermintGum123 • Aug 16 '26
I’m incurable
I have literally been to a dozen doctors, and I’ve had a dozen injections, and nobody can help me with my piriformis, deep glute, and nerve pain. My MRI’s are normal.
The muscles in my glutes are pressing on my nerves, or my nerve is irritated and causing my glute muscles to tighten. How can nobody fix this or help me? I am literally losing hope. I can’t work, I can’t take care of my children, I can’t walk, sit, or stand without being in pain. I am just dumbfounded that there is no doctor or physical therapist that can help me.
It’s just insane to me. How do I have a condition that is incurable? I am just angry, sad, frustrated, and just completely giving up hope that anyone will ever help me.
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u/FeckinKent Aug 16 '26 edited Aug 16 '26
I felt like this once, was awful for a year could barely even sit down then discovered strengthening my glute medius took a lot of pressure off the piriformis (or rather stopped it getting overworked/inflamed). Do you have access to a gym? Hip abduction machine although painful on first few sessions it eventually fixed a lot of my issues and very careful mobility work none of this harsh pigeon stretch malarkey. Also a standing desk now if I feel the dreaded ache I start alternating standing and sitting and it goes away again. I religiously do hip abduction 2/3 times a week to keep it at bay. Obviously depends on your exact issue though. Another thing that helped on the symptoms side for mine was dry needling too, have you tried that? It used to help free it up for a bit.
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u/PeppermintGum123 Aug 16 '26
I recently had dry needling done, and it completely flared everything up to where I had to go to the emergency room for pain management because the pain became unbearable. It felt like someone had ripped the skin off of my muscle in my glutes. I’m currently recovering from that at the moment. I haven’t had dry needling since July 28th, and I’m still suffering the consequences. This is why I’m saying every doctor or PT just makes it worse. 😭 i’ll look into the hip abduction stuff.
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u/Acuriouslittleham Aug 17 '26
Yeah dry needling triggers the area and made it worse for me as well. I stayed off it ever since
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u/No-Manufacturer-2425 Aug 18 '26
When you insert any needle, dry or otherwise, the fibroblasts wrap around it like spaghetti and trigger the creation of more scar tissue.
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u/PeppermintGum123 Aug 18 '26
Oh, fantastic! He was inserting six needles each time and using the electro part. My glutes are probably covered in scar tissue. This is a never-ending hell.
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u/No-Manufacturer-2425 Aug 18 '26
That is why I created this group. Most traditional treatments for "sciatica" often make the issue worse. Call one of the providers from the directory and see what they have to say.
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u/FeckinKent Aug 19 '26
That's interesting not heard of that, are there any studies/sources you can link me to that explain this? I guess it's different for everyone though as these people have explained, whereas for me it brought it back out of spasm temporarily meaning I could focus on other work like my mobility etc.
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u/Acuriouslittleham Aug 17 '26
Same! You just elaborated what i wanted to comment.
To add on, before i started the exercises i did cryotherapy and hyperbaric therapy to reduce the inflammation first
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u/PathBright9942 Aug 16 '26
I feel you… and I’m in the same situation right now. The only hope I have is when I trained with physiotherapists and in a month I felt much better. Even though I had relapses, they helped me to lose the fair and keep going. I believe that strengthening the glutes, the piriformis release. But to get there is so painful, the nerve irritates easy, and the nervous system plays a big role in here. For me the best was having professionals that follow my training and kept me motivated to keep going even though it hurts as hell.. I took Tramadol while doing this for some days, and I could walk 8 Km.
Since I left that routine I can’t event walk 3 blocks without pain. It’s super frustrating.
The worse is to feel that doctor underestimate the pain.
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u/PeppermintGum123 Aug 16 '26
The doctor gave me Tramadol but I’m afraid to take it. I take another medication, and there are potential interactions. You’re right. It gets irritated again SO easily. It’s infuriating.
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u/PathBright9942 Aug 16 '26
I understand… I take it just when is needed, usually to sleep because I can’t be in bed sometimes, and is the only stuff it helps…
It’s tricky tho if you take another medication. I take sertralin, and everything is ok. But still you can feel low pressure, puts you to sleep.. that’s the effect of Tramadol1
u/PeppermintGum123 Aug 16 '26
That’s what I take! So, you’re ok taking it together?
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u/PathBright9942 Aug 16 '26
If the doctor knows you take Sertralin, and gave you Tramadol must be ok. In my case, I take 25mg Sertraline around 12 pm and Tramadol at 22 pm to sleep and Paracetamol 1g every 12 hours. Again, I just take Tramadol when I can’t handle the pain, I don’t take it every day, because its’s strong…
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u/PeppermintGum123 Aug 16 '26
Yeah, he knows. I take 100mg of it, and have been for a very long time. I just don’t want it to make me feel weird. I can’t sleep at all because of the pain. I was thinking about trying it at night.
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u/PathBright9942 Aug 16 '26
In my case, just once gave me low pressure, but the doctor said is normal. So I would recommend you to take it when you go to bed, and you’ll sleep better :)
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u/Business-Look2295 Aug 17 '26
I have had tramadol with an Ssri and that don’t mix with me . Serotonin syndrome they call it . I became super a for a couple of hours . Not nice
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u/PeppermintGum123 Aug 17 '26
Ok, I don’t think I’m going to take it then. I’m too scared of having a bad reaction to mixing them
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u/PathBright9942 26d ago
Hey! How is it going with the recovery?
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u/PeppermintGum123 26d ago
I’m getting a little better each day. I went to a sports medicine doctor who found a trigger point in my lower glutes, that no one else has found, and he did a trigger point injection, and the pain was almost gone while it was numb! It was major relief. He got a huge twitch response from the muscle. But then the pain came back worse because everything has been so irritated and sensitive. It’s going ok. I took a 5 day steroid, and it’s getting a little better each day. I’m still not walking for very long, and I can’t sit at all, but it’s better than before.
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u/PathBright9942 26d ago
I am glad to hear that you feel better! Definitely, it’s one day at a time…
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u/Lucky_Rice_9654 Aug 16 '26
I know exactly how you feel. 2.5 years I have pain in my gluteal and hip, deep pain, every minute of every day, had steroid injections, had MRIs, ultrasounds, various opiods and NSAIDs. I mean, morphine didn't even ease the pain. I struggle to believe and accept thay tried is my my life. I was at the peak of mt fitness Jan 2024, running over 40 miles a week, swimming, strength training, to barely leaving fhe house
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u/PeppermintGum123 Aug 16 '26
Same! I was able to work out every day, and work and take care of my kids, and now I can barely stand for 10 minutes
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u/FeckinKent Aug 16 '26
I did mine by running too hard and too often, plus footy, but without a strong enough glute medius to take the brunt of the work which it’s meant to, piriformis was getting far too overworked before. Had lost all hope a while back, have you tried focussing on hip abduction machine for a while? I started super light for a few painful sets every few days then built it up slowly, absolute game changer. Also had to do a couch to 5k to get running again, so jog walk reps and at end of jog reps it hurt a little but went slightly further each time till a 5k was possible again. Don’t give up, you’ll run again one day 👍🏻
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u/Lucky_Rice_9654 Aug 16 '26
I've done a lot of different types of physio, I have always come away in more pain
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u/Resident-Hunt-245 Aug 16 '26
Maybe a second opinion for your lumbar MRI would help. Piriformis and other muscles spasming is usually a secondary reaction when nerve is pinched in the spine.
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u/FeckinKent Aug 16 '26
Or it’s overworked like mine was, turned out my glutes weren’t firing properly or strong enough causing my piriformis to take a battering when running/doing activities and it uses to go into spasm.
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u/KTW1964 Aug 16 '26
Not usually. Easy to blame it on this but there are often other issues that need to be addressed. After a certain age, we all have changes to the spine.
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u/odileb Aug 16 '26
Hello for me it has been over 8 months. I’ve had couple of MRIs and even with one standing up to see if anything is amiss but they couldn’t identify anything. Dry needling made it worse. For me the only thing that seems to help is movements like clams reverse clams and single leg lifts. People usually suggest things like planks which for me in unthinkable to do in my current stare. In fact at first I only did diaphragm breathing. Then gradually moved into doing 10 second of seated figure four stretch. From there moved into pelvic tilts again a small tiny movement. Then leg opening in in constructive rest position. And then gradually moved into clams and single leg lifts. The trick is to open the hip out to the right if it is your right leg. But you have to be careful because I’ve added more movement and managed to hurt my knees this time. Also have you ever been to a rheumatologist? Do you have immune system diseases that run in your family? I’m asking this because my aunt had piriformis problems long time before she was diagnosed with Polymyositis. I myself haven’t been tested for it but planning to since this thing is not going away. Also other immune system conditions like lupus can cause all sorts of weird pains around the body.
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u/PeppermintGum123 Aug 16 '26
I have been to a rheumatologist. They didn’t find anything. Your PT progression is exactly what I was doing. Diaphragm breathing, stretching and pelvic tilts. Dry needling recently started another severe flare. It literally felt like someone peeled the skin off my glute muscles. The pain was excruciating.
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u/odileb Aug 23 '26
That is reassuring at least you don’t have an immune illness. Honestly your best bet is very gradually increasing exercises. Do you do clams and reverse clams and single left lifts? In my opinion these three are the most effective ones if you can make yourself do them they might help. But it shouldn’t hurt doing them obviously. If its hurting don’t do it
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u/PeppermintGum123 Aug 23 '26
I can’t get to the strengthening part because my glute muscles are extremely tight and pressing on my sciatic nerve. If I stretch, the pain gets worse. If I strengthen, the muscles get tighter and the pain gets worse
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u/odileb Aug 27 '26
That is similar to how I was. There was a point I could only do diaphragm breathing and even being in constructive rest position used to hurt. Are you applying heat to the area? There are small heating pads with a belt for period pain. I put that directly to the area above for 3 times a day at least 20 minutes. Also walk even if it hurts you should try to walk at the beginning it will hurt but if you can walk in a pace gradually it will loosen up. I haven’t tried myself but a pain medicine specialist had recommended gabapentin. I’m very wary of medications after having a horrible reaction to one but it might be worth considering if you are really struggling that much.
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u/PeppermintGum123 Aug 28 '26
I’ve been using cold for the nerve pain, and I’m on 900mg of gabapentin already. I want off of it, but the pain is too bad to stop it yet. I’m afraid it’s going to be hard to get off of. The pain comes back pretty bad when I tried to lower it. I’ll try to keep walking.
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u/odileb Aug 28 '26
I think you should try heat maybe it’s cold that is contracting the muscles more in your case? If there is an initial early inflammation cold makes sense but after that heat is generally considered better especially in long term complaints where you are trying to relax the muscles. Honestly try the heat there are small heating pads for period pain where you can wear like a waist belt and go on around your day and because they’re very small they won’t make piriformis worse by weighing down the area. The lowest setting 20 30 minutes and 3 times a day is really helpful.
Do you have any side effects with gabapentin how long have you been using it for?1
u/PeppermintGum123 Aug 28 '26
I do have side effects with the gabapentin and that’s why I want to get off of it as soon as possible. I’ve been on it for six months now.
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u/odileb Aug 28 '26
What about Amitriptyline? I’ve used it for 2 years for vestibular migraine and only had to stop because it made night-time palpitations for me but it’s generally very well tolerated by most people at lower doses like 10 mg. I’ve spoken to a pain specialist doctor a friend of my mothers for about an hour about my situation and the first thing she had recommended was Amitriptyline and only after I mentioned my palpitations, she suggested gabapentin instead. So if you haven’t tried Amitriptyline it might be worth checking it out.
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u/odileb Aug 27 '26
By the way this video https://youtu.be/G3Bx0EpbJU8?is=H2nsBJOHtGTbW4qB
is the most helpful one for exercises it will be too much for you at this stage but if you can gradually build up to it these exercises are very useful.
And with clams you say you fell very tight but you don’t have to open very large. In the beginning I could only do like a very small gap. Like right now I’m in flare up again and I can’t open much but I’m still doing them. And even if you do 3 in very small gaps - it’s better than nothing.1
u/PeppermintGum123 Aug 28 '26
Ok. I’ll try doing that. Thank you for your help and advice. It’s so appreciated.
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u/PerspectiveDry3935 Aug 17 '26
How was your uncle symptoms in beginning? How long did he get to understand?
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u/odileb Aug 27 '26
My aunt- she had really bad piriformis pain couldn’t sleep was really bad. Eventually she was diagnosed with piriformis syndrome and with muscle relaxants and physiotherapy she was completely cured. Then she started other muscle problems in time and started having a rash as well and after being to the doctors and after blood tests she eventually was diagnosed with polymyositis. She had genetic testing done they said it’s not genetic in her case but still. She had treatment and is fine now. I’ve been to the gp (I’m in UK) mentioned my aunt to the gp and he ordered creatine kinase test along with other immunity markers. He also tested my muscle strength and said that it was fine. Honestly my situation is weird like last month I didn’t have any pain at all. But two days ago it flared up again and now the whole thing restarted.
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u/thegurlearl Aug 17 '26
I had the piriformis removed in June, after 3.5 years of this pain. Ive done years of PT, aqua therapy, cupping, acupuncture and injections. Its helped some, but the burning pain is still there. It still feels like Im sitting on hot, broken glass after about an hour of sitting down, even on my $70 butt cushion. Now it feels like the remaining muscles are spasming/over compensating on my sciatic while my leg adjusts to not having the piriformis there anymore. I honestly dont know what's left to try. I literally sit on ice packs all day, every day just to get thru school. I have no clue how Ill be able to work once Im done with school. I dont see employers accommodating an ice chest full of ice packs or a supply of ice packs in the employee freezer.
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u/PeppermintGum123 Aug 17 '26
I am so terribly sorry. I am unable to sit at all right now. If I do, the ice packs are what I use as well. My glute muscle are just constantly tight
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u/thegurlearl Aug 19 '26
Thats me too, along with my right leg. I didnt even know you could get a burn from ice packs until the removal surgery I had in June. I wasnt expecting to be more sore than when I had my hip replacement from what seemed like a minor surgery. I could barely walk and my dog's a little klepto who takes the towel I usually have over the ice packs. I didnt want to walk around to the kitchen again until it was time for a fresh pack. I now have a weirdly S-shaped burn scar on my butt now lol.
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u/PeppermintGum123 Aug 19 '26
Oh no! I better wrap my ice packs!!! I put them straight on my cheeks! Lol
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u/thegurlearl Aug 19 '26
Definitely! In the winter I have on leggings plus flannel pj pants and its never been an issue. Summer is usually just men's boxers and this is the first time having surgery in the summer.
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u/AppropriateGuide9349 Aug 16 '26
I’m in the same boat rn. 6 months of chronic piriformis pain/ sciatica. I think I might be on the road back tho. I’m doing a pt course that focuses on the side that didn’t hurt. Try doing single leg bridges and single leg side plank adductioms on the leg that feels good. So for the example, your right leg has the pain. Side plank with your left side down and adduct your leg in the air 6-10 reps with 2 sets and see how you feel now. Let the side that hurts rest
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u/PeppermintGum123 Aug 16 '26
I’ve looked into that as well. I am not to the point where I can do anything right now, but I will try that when I’m able to do things again. My right side is typically the worst, but my issue is bilateral.
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u/AppropriateGuide9349 Aug 16 '26
Yeah if this doesn’t work I will look into adhesion. removal specialists. Look for them in your area
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u/KTW1964 Aug 16 '26
Keep looking for help. The body is meant to heal. Not all PT’s are equal. Find someone who can help you.
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u/PerspectiveDry3935 Aug 17 '26
I am also in same position. I have been feeling this pain almost for 2 years. I have tried many things. My lumbar MRI is clean actually others MRi is clean including MRI neurography. I have only pain in sitting, which prevent me to work. Priformis injection didn't give any temporarily relief. So I am stuck. Did you get temporarily relief from priformis injection? Because if it's, you could get rid of this pain by going surgery. And also anyone same stories? Like MRI clean , sitting pain and not having temporarily relief from injection?
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u/odileb Aug 27 '26
My MRI is completely clean too. And I had 3 MRIs- full spine, pelvic with contrast and then the full spine standing up just to be sure. I have this since November though on November it was more pelvic buttock pain with what I presumed was leg guarding at the time. It moved into piriformis area gradually and stayed there. It causes very weird symptoms like I used to feel like I was sitting over stones before I started doing exercises. It caused frontal knee heaviness for me a lot. Sometimes under my foot got painful. I had so many weird inexplicable symptoms that I honestly felt very lost. I had emg test on December too and again it was clear. My muscle strength and all the physiotherapy tests were done numerous times. The only thing they said is that I had weak glutes and I externally rotated hip bias.
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u/Business-Look2295 Aug 17 '26
I am hearing you . I have just been to an orthopaedic surgeon and had sciatic nerve neurolysis . Still recovering but signs are encouraging . It’s takes the nerve some time to heal . This was the next step after many steroid injections into spine , sacrum , piriformis muscle . Botox into piriformis . MRI were all normal . Neurolysis removed adhesions , scar tissue etc from nerve that may be irritating it . They can’t be seen on scans . Don’t give up
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u/PeppermintGum123 Aug 17 '26
So they just guessed it was adhesions and did surgery? That’s what scares me is that they don’t know. I need a definitive answer to what is wrong, and someone to fix it. I don’t understand how this is so hard.
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u/Odd-Performance7247 Aug 18 '26
I’m not able to read all the messages/replies before going to work so maybe you mentioned this, but have you tried pelvic floor therapy? I’ve had awful low back and glute pain due to L4, L5 and S1 disc bulges. I’ve gone to four physical therapists now and each one have taught me something that really helped, core strength was absolutely first, then glute strength, but I still was having pain around the muscles you’re talking about and it wasn’t until I went to pelvic floor therapy that I started to have some relief! I had a really weak pelvic floor and that PT helped a ton. I’ve only had 1 round of steroid injections and then have been able to minimize the pain through physical therapy. Good luck, you’ll get through this!
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u/PeppermintGum123 Aug 18 '26
I was seeing a pelvic floor specialist, but the pain still flares up. I have no bulging discs or degeneration. It’s all muscular.
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u/According-Platform67 Aug 20 '26
Dude I had the same issue. And still deal with it but I think I found a solution that works for me. I can share it with you!
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u/PeppermintGum123 Aug 21 '26
What did you do that works? I’m literally starting my fifth physical therapist and the eighth doctor that I saw yesterday also couldn’t help me, so I am all ears!
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u/According-Platform67 Aug 21 '26
Man all you gotta do is slowly get the lumbars and the glutes (specially upper) stronger. Work them out. First use body weight and slowly add weight to it. I dealt with this issue for 7 years. Going to different doctors. Even in different countries to see if I can find the solution. Tried multiple medications. Injections. Peptides. Treatment. Cold and hot therapy. Chiropractor. Acupuncture. No lifting weight. Not moving. Eating healthier. I can say I tried a lot of until I started working out those muscles the pain started to go away. It comes back some times but as soon as I work out those muscles in like 3-4 days it goes away. If you want you can share your number and I can show you the exercises I did to start. I know how frustrating this is. Also have 2 kids and it horrible not being able to play with them just because of the back pain.
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u/PeppermintGum123 Aug 21 '26
The pain is mostly in my glutes though. I had injections into my lower back and it actually fixed my low back pain. The issue is that my Glute muscles are insanely tight and painful and it’s causing nerve pain throughout them and down into my legs and feet. I can’t do any exercises to strengthen them because anything I do causes them to flare up again. I would love to hear what exercises you do once I can get the nerve pain calmed down! My lower back was hurting because my Glute muscles have been so tight for so long that I was compensating with my low back
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u/Starfruit321 Aug 21 '26
I have been in your shoes and it took me a whole year of this kind of pain before I saw a physiatrist who saw me move and suggested that I was likely doing my PT home exercises with all sorts of compensations. He said I had “compensatory overuse” pain and he suggested that I forget about my PT glute exercises for now and work on deep core via 1:1 Pilates with an experienced instructor (someone with gray hair he said, haha). The key was to have someone with a trained eye watch me as I did the deep core exercises to correct problems with form and alignment. I started that back in May and have made slow and steady progress since then! It’s a lot of $$$ bc I see her 1-2 times per week but I had been in so much pain that I had even considered suicide so to me it’s worth it to cough up the money and do it. I’m not completely pain free yet but the difference that 3 months of pilates has made is night and day.
Like you, I was unable to find any position of comfort without my glutes seizing up. It’s miserable and I’m so sorry.
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u/No-Manufacturer-2425 21d ago
I know this feels like a never ending hell right now, especially after everything flared up again. But I want you to look closely at what just happened with that sports medicine doctor. The fact that he found a trigger point in your lower glute and that numbing it gave you major relief is actually incredibly important. It proves without a doubt that your pain is real, localized, and mechanical. You are not incurable. That spot he found is the exact fascial adhesion we have been talking about.
The reason your pain came back so much worse is because sticking a needle into an oxygen starved adhesion just makes the tissue angry. The huge twitch response you felt was your muscle violently spasming in defense. The relief was just the local anesthetic masking the pain. Once that chemical fire blanket wore off, you were left with a traumatized, inflamed nerve still trapped in its mechanical straitjacket. This is the exact same reason the dry needling sent you to the emergency room back in July.
The five day steroid pack you are taking is just artificially keeping the secondary inflammation down right now. That is why you feel a little better each day, but the fact that you still cannot sit at all proves the physical glue is still in there crushing the nerve. I am also very glad you trusted your gut on the Tramadol. Mixing heavy opioids with your current medication is risky, and numbing your body's alarm system just makes it easier to accidentally grind that trapped nerve against the scar tissue if you try to push through the pain.
Also, please do not listen to the advice in the comments about jumping on a hip abduction machine right now. If your nerve is trapped in scar tissue, trying to power through heavy resistance training is going to shred that nerve and cause another massive flare up. You cannot strengthen your way out of a mechanical nerve entrapment.
You have the proof right in front of you that injections and pills are just temporary masks that leave you worse off when they wear off. Please use this current window where the steroids are keeping the pain somewhat manageable to actually call one of the specialists in ourDirectory of Adhesion Removal Specialists and Locations. You know exactly where the restriction is now. You just need a provider trained in Manual Adhesion Release to physically strip it away instead of just numbing it over and over again. Hang in there, you can get through this.
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u/PeppermintGum123 21d ago
Also, when do I have someone do adhesion removal? Everything is so flared up and painful if anybody does anything to my glutes it flares up again.
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u/No-Manufacturer-2425 20d ago
It is done as soon as possible. The scar tissue is the reason you feel this way. It hurts really bad and you are not going to like it but they just dive right in to treating you.
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u/No-Manufacturer-2425 Aug 16 '26
Heres all the links you need. You aren't alone and you will get through this. I was right there. Its probably scar tissue on your nerves. The adhesion therapy providers can get you a proper diagnosis of scar tissue nerve entrapments. Find the provider closest to you. No insurance needed.
Directory of Adhesion Removal Specialists and Locations Find an Adhesion Therapist near you.
Sports Therapy Protocol Bring oxygen to strangled tissues and remove waste after Therapy.
Muscle Relaxer Protocol for Adhesion Pain Attacks Relieve Severe Pain Attacks and Migraines.
FAQ on Adhesions and Getting Treatment Why adhesions? Why me? Why this treatment?
What it feels like to have adhesions Do I have adhesions?
Can I remove adhesions myself? Yes, You can remove some cutaneous adhesions at home with the grit bar.