In this entry, I am actually going to try to be both serious and informative. Hard to believe….but here it is:
In the past couple of years I have been in a hell of a lot of pain from what has recently been diagnosed as Piriformis Syndrome. If it sounds radioactive, it is. Not in a U238 kind of way but it radiates like a bitch and if you have never experienced chronic pain, do I not recommend it, even to those amongst us who profess to enjoy it. If by some chance, nature did not endow you with an ounce of empathy, this here: tear jerking, fist clenching, teeth gnashing, and all consuming pain, will make you wish you never existed. And the best part of it is, it's on 24 hours a day, 7 days a week, and every sorry ass day of the year.
Why am I telling you this? Fear not, I do not need your pity or sympathy, even-though I'll take your money, but if by some stroke of fantastic luck, you are reading this, and are sitting at home and contemplating the old adage, that dropping like a stone has its advantages, read these here phrases before you decide to leap off the ledge and into the bottomless pit (btw, in you are going to do it anyway, remember that you must jump from at least the 4th floor, to ensure a sufficiently traumatic death? .
As I was saying, in October 2006, I decided that I had had enough of this grief to actually do something about it. I went to see a MDs, and as it turned out, not just one but many. At the time the pain was severe but not yet devilish. I had just finished crossing the country and the Pacific several hundred times, in a three month traveling frenzy, which had aggravated my aches and pains enough to warrant a trip to the clinic. I started to believe that since I was spending all this dough on health insurance, why not give medicine a spin, no more barin' and grinnin'…. let's get some relief, you've earned it….
Long story short, the pain got worse and worse, the MDs got more and more confused as to why my supposed Sciatica had no visible diagnosis, no herniated disc or spinal stenosis. Hell, at this point, since we can't figure this out lets shunt him off to the pain clinic; it's what we do when our protocols are no longer useful and we'd rather not look into it, it's probably all in his head anyway.
Being the type A that I am, and a strong believer in answers to everything, I simply refused to believe the way this was ultimately going. I decided to enroll my friend Scott, the MD, who one early summer day came bouncing out of the San Francisco mist to casually mention, that I ought to get Botox injections: " I read a paper recently that Botox injections can be quite effective, if, as you seem to so vociferously believe, that it's a muscular, not a skeletal thing".
A quick search (Botox + Siatica) on the internet and there it was, the number three, the trinity(actually six). There are, in turns out, not two but three possible diagnosis for this wretched sciatic misery; and here is my word for it: Piriformis Doloris Vendictis.
I won't describe it here, just go to these and the other links, I am so generously providing alongside this entry to remind you that medicine is protocol based; to believe in your instincts and listen to your pain, not the physicians who think they seen it all before; just another patient, like every other miserable wretched case before it.
My condition, it turns out, should have been well known to the MDs who treated me, it's not that uncommon, but thanks to the time constrained and generally disinterested MDs who treated me, I was well on my way to rotting, alongside all the other unlucky corpses haunting the halls of the chronic pain.
Epilogue: I received a Botox injection in the Piriformis last August fourth, and am doing better. Not out of the woods yet, as a lot of physical therapy and possibly many more corticosteroids and Botox injections will be needed to deliver me from this nightmarish affliction, but at least now, it has a name and can be treated like the bitch that it is.
Below, are must reads, if you have any kind of sciatic like nerve pain radiating down your lower limbs. Even if your MRI shows signs of herniation or synopsis, as it often will; do not discount the Piriformis, and mention it to your MD, as a very real possibility. Send him/her the links and nip it in the bud, before it breaks your spirit, as it eventually will as the longer a diagnosis takes, the greater your chances of going insane in the membrane.
Take it from me, chronic pain is unmitigatedly the closest thing to absolute misery. If you have it, wether or not your Piriformis is the culprit, you have my deepest sympathies; I feel your pain, I really do mean it, even if I often profess to the contrary.
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Okay having some success after doing a physio treatment. Basically my IT bands are super tight – they go down the outside of each leg. I lie on a foam roller and roll up and down, it's really sore and painful indicating how tight it is. I'm also doing some glute maximus exercises as I was told they are very weak and flat (especially the left painful side).
I've done physio before (clam, bridge, core strengthening) but never really the IT band stretch/massage and glute max exercises. (think it's the IT band). Many videos describe this as putting the load on piriformis if the IT band is tight. Give this a try and let me know if it helps you guys!
I have been suffering through treatment after treatment with no hope in sight for five years the Dr's just kept saying they could not find anything wrong until my chiropractor beleve it or not made the diognosis but have yet to find adiquit treament for my severe pain and numbness piriformis syndrome is no joke I hope that soon I may find some relief but first I must find a decent Dr. after so many years of pain I started to think that I just might have to live this way forever but seeing this site has given me hope that some day I will be pain free again. I have tried all kinds of streches but I think surgery is my only option left. now I must find out what all the surgery intells.
i have had pain in my left buttocks four 5 years now . after i sit for about an hour it feels like something is pinching me right were the sitting bone is .then as i sit a little longer the pain begins to get worse and a burning feeling goes halfway down my hamstring. the only difference with my conditiopn is that it only hurts when i sit i can run or walk i can even do all types of hamstring exercises with no pain. but it does hurt to ride abike its like the seat of the bike digs right into the spot that is sore. when i get off the bike the pain is wow! needless to say i can no longer ride a bike. i have seen every docter that u could imagine. with no answers. when i do go to the dr. they feel and push all around the buttock area mostly around the ishium area (they push really hard for me to get the same pain i get when i sit but it never hurts) it only hurts when i sit …… i can not recreate the pain unless i sit the drs. think im crazy. i also had a back mri hip and pelvis mri a mylograhm thats when they stick dye into your spine and spin u around and take pictures everything is negative had a cortizone shot in buttock and the back. what could this be anyone help! i think my next step is to get that mr neurogrphy. it seems like everyone else has other symtoms like trouble walking or running my pain is just on my butt. anyone else out there ever have this problem. thanks ps hope everyone else fixes there problem i feel for ya it sucks being in pain everyday.
Curt/Rich – I also have a pain in my butt. Sorry to say it's been many years now since 2001 and no solution. Pushing with your hand won't reproduce the pain, but you should try sitting on a tennis ball and rotating around on it with your legs bent in the air. You will probably find some really sore spots like I have…even try on your side near your hip as well.
I haven't been able to figure it out but I found tylenol with voltaren has helped me during the day. Walking is okay for me in general as long as it's not throbbing before I start walking.
Please tell us the results of any MR neurography. MRI didn't show much for me either just some usual disc bulging on S1/L5. I don't really want to do surgery and no one is suggesting that this will solve it since they don't know the source of it.
The closest thing I can figure is a cycle of tightened butt muscles (trigger points) when then inflame the joint (around S1) and around we go. Every morning I wake up back at the same spot.
I am so encouraged to find this site. I have been in chronic, constant, unrelenting pain for almost 4 years. It started the month before my 29th birthday. I originally had the pain constantly in my low back, left side butt, and pelvic pain. My doctors all thought it was gyn. related and recommended a hysterectomy!! Very traumatic for me as I wanted more children and no tests, ct scans, mri's, bonescans, etc. had showed any abnormalities in my pelvic area or spine. After having the hysterectomy I immediately noticed the return of the pain, however, the pelvic pain subsided. This led me to believe it is indeed spine, low back related. I was referred to a pain doc and he was convinced it had to be my left si joint. Had tons of stuff done to the joint, including, injections, blocks, ablation, blah blah blah. Nothing helped. I was referred for an si joint fusion. Going in the doc told me it would not likely help. Pain continued immediately after surgery. I could not believe it. After that failure the pain doc recommended a spinal cord stimulator. I had that removed quickly as it only made my legs vibrate and didn't help pain at all. I have switched pain docs and new one I saw a couple of weeks ago said it really is not likely si joint as everything has been done to it with no help. He now wants to try some different injections at s1 level. After reading this I am going to ask him to also inject the piriformis muscle. I have never had pain in my life, always healthy, fun, active…ran miles a week. Since this started four years ago I have become housebound, no longer work, and lay on the couch all day. I am a mom of 4 kids and cry all of the time because I used to be so much fun and loved my duties as a mom. Now I just can't wait for school because I can sleep the entire time they are gone to avoid the pain. I often pray for death and have contimplated it. I feel people just get so tired of hearing about it, but as the moderator has said, NO ONE understands chronic pain until it happens to them, and of course you would not actually wish it on them. It's a horrible cycle. Sometimes I think it would be easier to have some life threatening disease that way there are types of treatments that can make you better. I am so praying the injections to the piriformis will be successful.
Thanks for letting me ramble. I would love to hear from any of you, especially young moms, who are going through this and feel there are no answers.
Courtney
p.s. my email is courtneyfirststeps@yahoo.com
Hey Courtney – I'm really sorry about your horrible situation.
As I mentioned nothing has worked for me including botox in piriformis but hopefully it will work for you.
During the holidays on the day of my flight home something twinged in my back, this time in the central area and when that happens the first few days I am hunched over and often can't walk (thankfully not this time). But it recovers within a few days. Then the butt pain kicks in.
It is an intense pinching feeling in the left butt. I can only sleep on my right side which is tough because I like to roll around. The pinching is worst when I try to roll onto my stomach. During this phase the only thing that helped was an S1 nerve root block so I am going to the doctor today to try that.
This blog encourages me. I live in Mauritius and five years ago after some 9 months of using a treadmill excessively I developed intense pain in the right buttock brought on by walking on hard surfaces. 9 holes of golf ie walking on grass is sometimes ok. My othopod here diagnosed osteo arthritis of the hip after looking a x-rays and eventually gave me a Birmingham hip resurfacing in 2006. No help at all. He then said get a MRI of spine and see a neurosurgeon. Two of these later I had a lumbar decompression 2008 in Mumbai – again lots more pain but no help. My physio has suggested piriformis syndrome so I have been researching this – stretching techniques, MR Neurography ie Dr Aaron Filler, injections etc. I would like to be properly diagnosed but cannot find a MRN scanner anywhere near me. Costs about £1000 in London. Does anyone know of whereabouts of this machine in say Reunion Island or SA?
I have not commented for a long time but for those of you who might think that you have Piriformis make sure you turn every stone before taking drastic measures… Check out Discogenic pain…google it and learn about it…here is a quick link.
http://www.uclahealth.org/body.cfm?xyzpdqabc=0&id=502&action=detail&ref=95#
I've been posting here on occasion. Going to try to get an MRN if I can here in Calgary, Canada. Seems it should show which nerve is irritated and possible entrapment and hopefully what is causing it.
Recently I had an s1 nerve root block and it relieved the pain instantly but it only lasted a day. So that would indicate it's probably the miracaine that is added to the injection.
Going to try some ART again and masssage to see if there is any entrapment at least but sometimes I feel this is just irritating the nerve more.
I have been suffering 5 years from Piriformis syndrome but have not found anyone who gives a rats ass or believes in it. My right SI joint is fused from a pool diving accident in the 80′s and I am in pain all the time. My rt buttock, outer hip flexor and hamstring hurt all the time. I have had ESI's, SI injection, PT, chiro, Meds, Massage therapy, prednisone packs, no relief. I am in agony. I live in SC and if any one knows who I can go to please let me know. I am suffering bad. I am taking Yoga and it hurts me too. I cannot cycle, run, walk, and am pretty athletic and need help.
I will about do anything, no matter the cost to get me out og this misery. My family has no idea what kind of pain I am in and tells me I have to just deal with it. Well, it's hard and I see why people want to kill themselves to keep from suffering their pain all the time. I see why cancer patients do this. I know now.
Help!
Donna- Have you given pain management any thought? Methadone in small doses is a very effective synthetic narcotic…They prescribe it to pain patient and it helps a lot, it does not have the stigma that it once had…. I know they give it to recovering addicts but it was and is mostly a pain pill and a good one at that..Of course you should really look into it and inform yourself, it is not a small decision to make as it is a REAL bitch to kick if you ever get rid of the pain…but in the meantime it will, if you respond well, be a great pain management drug. Look into it, ask your doctor, a good doc, one who understand pain medecine…
I just wanted to report some good news finally. My pain has substantially subsided as of late! The three basic things I started doing was ART, massage therapy and taking calcium citrate.
Calcium citrate – someone mentioned on a forum that the repair of tendons which are close to the bone come from calcium in the bones so common blood tests might not detect issues with calcium in the bones. This coincided with the pain relief after 3-4 weeks.
ART – I had this before but they were much more aggressive in the past and actually caused spasms. The current doctor also stretches and works on the psoas muscle which I never had worked on before. After about 4 or so treatments it still wasn't any better so I was about to give up on it.
Massage therapy. Some really sore spots all over like in IT band, calves, hamstrings, etc.
Thumb massage in upper left glute near bone. I noticed my left upper glute seems to be much less toned probably because I've been putting more weight on the right side. There is a really sensitive spot in there that I massage myself.
Foam roller – rolling around on my quads, IT band and recently inner thigh, found some really sore spots.
One great theory I heard was that I might have had some disc irritation at first years ago then that resulted in the tilting of my pelvis to avoid pain. I've definitely lost the usual curve in the lower back. So I was told to stretch the hip flexors, psoas and quadratus lumborum to allow the pelvis to return to natural position.
I'm not out of the woods yet and have had occasional numbness in my left foot as well. Hope that helps someone!
I'm wondering if any of you have tried acupunture. I've had injections into the SI joint & ischium that gave me a little relief for awhile but the pain is back as bad as ever. I've been getting massages (some temporary relief) & do stretches every day. My chiropractor & pain management doctor think my problem is muscle spasms. Since I don't know what else to try I'm considering acupunture. I really appreciate this forum.
Linmarie
I have had chronic pain in my hip area for about 18 years. I've tried everything including exercise, pain management, physical therapy, massage, anti-inflammatory drugs, acupuncture, chiropracty, neurosurgeons, back surgeons, etc. I am a teacher and I live in constant pain. Bad pain. You know how it is. The kind of pain that takes your life away. I have read about a doctor in Santa Monica (I live in Texas)who does a special surgery (I think it is an outpatient procedure) to relieve periformis syndrome which I believe I have. I have had a physical therapist and an acupunturist tell me this is what I have, anyway. I have been to a neurosurgeon who could find nothing wrong, he said, except a little scoliosis and age-related spinal stenosis. I've been to other doctors who find nothing "significant." My pain is more than significant. I believe my spine is rotating due to scoliosis and pulling on the tendon that connects the periformis to the hip bone, thus constricting the muscle and causing the sciatic nerve to be severely pinched. Anyway, I cannot remember the doctor's name in Santa Monica but I'm going to check the internet. No, I can't afford to go to California and I'm not even sure my insurance will cover it, but maybe they will know someone closer to home who performs the surgery. I have even considered suicide as a way out of this pain, but of course that's not the answer for me. I am chronically depressed and have been on anti-depressants all these years. I think if I didn't have this pain I wouldn't be so depressed. If any of you out there know of a surgeon who does the periformis syndrome surgery, please let me know what you have learned.
I have given birth to two children, and my piriformis pain rivals labor pain. I do not know how the folks have lived with this pain for so long. I believe I came into my piriformis syndrome from an overdone yoga pose, but have had great curative results from yoga. Four or five times a day I apply heat then do stretching exercises which include Pigeon pose (hold for a minute-takes that long for stretch in piriformis to occur), and Cow faced pose. I have read that also Bound half lotus is great, but have been in too much pain to go there yet. I found four other stretches on internet sites that seem to be working well too. My son's acupuncturist tells me that she treats this often, so I am going to her tomorrow. I'll weigh back in on how that goes, but she seemed pretty confident.
Finally, in yoga we learn to be aware of posture, and to think of "stacking the spine" in your pelvis. I've been trying to be mindful of that concept, and can feel relief in the pressure on that painful area when I sit up very straight, shoulders back.
I'm only on day 5 from onset, and I can once again drive the car without crying from pain. I know these things sound so simple as to be lame, but I feel like it is all working. Oh, and sleeping with pillows under my knees to slightly elevate the pelvis has helped me get through the night!
I have had classic piriformis syndrome for almost a year. Once it had set in, I could hardly sit for more than a few moments, so I worked with my laptop standing all day. Car rides were the worst. Sciatic-like tingling, or pins and needles, down to the calf/ankle from the trapped nerve. Continued light exercise but nothing too straining. ART and massage aggravated the spasm, so I stopped that. Had all the classic stuff–cortisone site injection, epidural injection around L4-L5, etc. Did the stretches, the tennis ball. Micro-disectomy, finally, for what was seen as a small disc protrusion. To the person who said their piriformis was worse after surgery, indeed.
Finally, I just had the botox injection. It's still not common for this condition, so am not sure how soon to expect to feel or not feel the muscle and/or how soon to start gentle stretching and/or massage.
Any thoughts? Am not going back to PT because I think I could teach a class on piriformis streches and pelvic stability at this point. But will start stretching soon and consider ART again. Massage, for sure. But when?
Thank you in advance. I feel for all in this thread. It's a difficult thing to deal with, much less explain to someone who has never experienced.
To those who think they have piriformis syndrome, you may not so be careful. I had botox in piriformis and it didn't work. There are many muscles in the glute/hip area.
I just wanted to give another update that things have improved and are still doing okay. Still some issues and numbness in left foot at times but much preferred over pain.
I can't explain exactly what happened to help it but I took calcium nitrate (apparently helps heal tendon injuries), had ART and massage. I did ART before and it caused spasms so I was skeptical but this time it was much more gentle.
Now I sit on a dog ball and lean back and move my leg around, cross it, etc to hopefully break up any scar tissue. It's hard to believe it's better after 8+ years of pain and it always comes back so we'll see.
Will, I'm happy to hear you are better. I've also been having alot of massage therapy & sitting on a tennis ball at times. I have to be careful with the stretches, they exacerbate the pain. Yesterday, I tried the piriformis stretches again & they really increase my pain. So, I agree with you that my pain is not necessarily piriformis or I'm hurting it someway with the stretches. Other glute stretches don't hurt as much. I've decided against the botox (for now). I'm thinking about contacting the doc in Santa Monica that specializes in the area. The massage therapist does help. I am going to try a hot springs spa again tomorrow. Last time I went, I felt better everywhere except the ischium (inflammation?) Hope your pain doesn't come back this time.
Linmarie
I am glad I stumbled across this site…it is refreshing and yet difficult to hear of many others who are suffering and not finding relief. I have been in pain that has increased across the last 11 months…it started as a slight pain and has moved to a constant all day, every day no matter what I do. I was training for a marathon when the pain first started and had to postpone that…I ran a half marathon this weekend after taking a little break the past couple months from doctors/therapy/chiro/etc. I have tried ART therapy, traditional therapy, chiro and nothing has worked. I live in a super small town and acu/massage is not really available…I drive 90 miles one way to get to my docs! I was wondering if anyone has tried the wedge device?? Also I am scheduled in two weeks for RF ablation on the L5-S1 area to see if that will relieve the low back, sciatic, piriformis pain. I guess I am still lucky because my pain is limited to the low back, piriformis, hamstring areas…has yet to go down past my knee. The pain in the piriformis is so bad that I often stand all day sitting on that tennis ball is worse than a visit to the dentist for a root canal…I hate the tennis ball!!!! Any feedback on the wedge or the RF ablation would be appreciated!!
I've had buttock pain on and off for a long time. I ran and biked alot. Now i do yoga but a few weeks of hiking and spinning and it's turned into major sciatica. I sleep so nicely and it feels great. But then it kills as soon as I stand up. Forget about sitting. I actually set the floor for dinner and my spouse lays on the floor with me to eat together. To go on an outing together, I lay in the back of our wagon. When I must drive I have found that sittin on a small plastic binders helps some. So does vocalizing ( scream, yell, sing or whistle. I'm doing accupunture (not helping) and seeing a chiropractor that also does message. In all my research I plan to use massage, trigger point therapy, a good diet, releasing pent up emotions, creating positive affirmations, rest, and most importantly muscle balance therapy. It's the recipe I'm working on anyway. Hope that helps.
I feel like I've just found a lost family. I am lying in bed with a heating pad and an iPad because I can't sit at all. It's been a year and a half but I'm starting to lose it and am glad to know I'm not crazy, just in unbearable pain. Thanks for the helpful advice as I will start a few today.
Okay guys it's Will, I'm baaaaaack! :0
Sorry to hear that some of you still have pain and while everyone might have different issues I have learned a few things since I last posted. Like I said above I've done everything from chiro, ART, IMS, botox, prolotherapy, nerve root blocks, physio, stretching, sitting on a dog ball (trigger points), ice, heat, blah blah blah.
The last time I got relief I couldn't figure out exactly what it was but I started doing ART yet again but slightly different (not as aggressive for one), but then I added massage and some chiro. That did the trick for 6 months after stopping treatment. Then we moved to the east coast and it started up again in sept 2010 when I was sitting a lot for my day job. At the time the pain improved I was also taking glucosamine and calcium so I wasn't sure.
So out here I thought it's probably the massage since I had never done that before so I started massage only. It didn't help. So it took awhile but I found a chiro who does a little ART but also has a deep tissue massage therapist on staff. So I started doing both and voila the pain was gone after a few visits. I still have some numbness but the pain is gone. It mostly came when I stood up, you get that nagging jab in your butt. This time I wasn't really taking anything.
For massage make sure you get a deep tissue massage therapist who knows his/her stuff. Mine has science degrees and differentiates herself from those who 'push hard' to use her words. Surprisingly there is little pain when she does her thing – she focuses on the glutes (both sides as you usually compensate by leaning on your right side) as well as the lower back, really sensitive spots in the center between the verterbrae it seems.
It's really hard to believe I was able to first get relief after many many years of grief, and when it came back, to find another set of folks who could replicate what I did. Don't be doing physio at first when you are in pain, as you need to relieve the pain first, usually there are lots of adhesions and scar tissue in the muscle. Then after the trigger points and scar tissue are gone, you work to stretch and then strengthen the muscles. So many people try to stretch and strengthen right away which only aggravates the condition or is ineffective. Hope that helps!
Hi guys and gals
Had the same problem for six years now, no permanent relief in sight, the UK health service cannot cope with this problem.
Just a small piece of information though – for those having trouble sitting, a kneeling chair / stool has reduced sitting pain symptoms dramatically for me as it unloads the glutes and reduces the pressure on the already pressured sciatic nerve. Was worried at first as it hurt my knees for the first few days, but am now used to it and the knees are fine. Even driving now is less painful due to reduced pain generally, I suspect the reduced load is allowing things to heal a bit.
Hope this helps
Rich
I have been in the same pain for a year and a half and I cannot believe others are experiencing this also. I have pain bilaterally – down both legs and both buttocks. It started with severe pain down both legs and sitting was impossible. It is now a year and a half later and I find I can sit for about an hour now without the tingling and pain down both legs but I can't work still and I'm frightened of my future. It made me sad to see others are feeling so desperate and I too have thought of suicide as a way out but I don't think I could do it either. I still have hope some days and I've tried accupuncture, PT for months, chiropractic, and nothing really helped significantly although I think they all helped a little. My doctor wants me to have a nerve block on my right leg as I have a nerve that seems to be irritated on the inner thigh that we both think is possibly a separate issue. I wold consider the botox as I think it could be piriformis since i sat VERY long hours for years before this all happened daily. I worked too much and now i am not working at all which is scary. I jumped through hoops to get the MRI Neurography approved by my doctors and health insurance here in Massachusetts but so far I can't get it covered – and this is after months of convincing my doctor to give me the order so it's been a ridiculous waste of time. I cannot say enough how much I think the healthcare industry is so poor despite the fact that I have the best health insurance around (or one of the best). There is an MRI neurography here in MA and I would like to do it at some point but I need a doctor who can help me get it approved. nobody believes in piriformis either so it's hard to get help for this but I can't go on much longer like this either – it's just misery. I'm glad I found this page. thank you and hope to hear from others about what helped them. I read somewhere that Myotherapy helps so that is what I'm going to try next. OH and what is ART therapy? I looked it up and only found art therapy which I don't think is what people mean here!
Sorry to hear about your problems. Hang in there as with persistence you can find a solution. ART is active release therapy where you try and break up the scar tissue/adhesions that have formed over time. ART alone didn't work for me and seemed to aggravate the condition as one guy was very aggressive – I used to get brutal spasms in the glute at 4am which was totally misery.
PT and chiro didn't work for me either – then I added a good deep tissue massage therapist to buttocks and lower back, as well as psoas muscle, IT band – but I think butt/low back did the trick together with a chiro adjustment. Took at least 5 visits twice a week. I had chronic butt pain with left foot numbness for almost 10 years. I sit a lot myself as an IT programmer – I often cross my left leg over and other things that don't help. My feeling is get rid of the pain first before you do PT (strengthen abs, etc). Hope it helps!
Greetings, lying in bed with heating pad under my buttock, pillow under my knees… thinking; am I going crazy! Is this pain real? Is this a life worth living? How on earth can it hurt so much for so long? Most people don't understand; just suck it up and live with it!
I now have much empathy for my son in-law whom has suffered with chronic back pain for many years; experience is a cruel teacher
I feel much sadness reading the stories here of all the painful suffering we are all going though. Thanks for the tips and advice on dealing with this. I'm not sure where I'm heading on my journey with this pain; however now I have some comfort in knowing there are others whom understand what I'm going through.
Best wishes for everyone, Milton
Ok folks, I have not chimed in since this post has been up, as it's author I am obliged to keep abreast of it's activity and who visits and their concerned about their chronic pain…which as you all know is a misery as reflected in these comments. Of all the 275 blog entries I have posted since April 2007, none have generated more interest than all my other, more "interesting" posts…and the reason for than is that pain rules most of your lives. I personally have long ago given up on the Piriformis diagnosis and/or spinal herniation and the myriad of what I call "bad spinal" medicine, which seems to be the norm in modern clinical medicine…. a failure of immense proportions…!
As it turns out, most chronic pain issues, and especially those which involve the back or legs, neck and arms are due to TMS (Tension Myositis Syndrome) as discovered by a NYU physician called John E.Sarno… Your best bet is to pick up his latest book and read it carefully" The Divided Mind, The Epidemic of Mindbody Disorders" or any of his previous books…all easily found on Amazon… you can also go to this URL http://tmswiki.org/ and find out more about TMS. Chances are you have TMS…. Read his book with an open mind and take the steps to feel better….. Best to all of you…..
I recently had lumbar spinal decompression and was having "barbed wire" pain in my buttocks and down my legs to my knee. As my MRI results seemed to show no nerve restriction, I am being sent to pain management. On my first visit, was prescribed neurontin and given some (5) needle sticks in my buttocks. 5 days later, the pain has gone from prickly pain to severe tightness pain in buttocks, hips down legs, and has now gone into lower part of legs which was the ONLY place I wasn't having pain previously. I went from getting prickly pain after prolonged sitting to now being barely able to sit at all. The injections seemed to make my problem go from bad to worse and seemed to throw the 11 weeks of PT I had down the drain and start me back at worse than square one. I said all this to say be careful of letting someone stick needles in your piriformis as it may elevate your pain.
I have been suffering from piriformis syndrome for over 7 years. therapy has only made my pain worse,. allergic to steroids. Oct 31, 2011. I finally got my Dr. to give me my first botox injection. I went from barely moving to volunteering at an animal shelter 2 hrs. a day. I was in heaven. then my worst nightmare happened. The injection wore off. it seemed to happen very fast, not slowly and it didn't last the three months as expected. now I'm in pain again counting the hours until i am able to get the next shot. (like a drug addict) Is it etched in stone that the injections be spaced 3 months. I've gone from being productive and worth something, making a difference to worthless. And my dr doesn't give a crap. Does anyone have any information about how long these injections last?
2 years and 8 months ago I had a severe fall on concrete that resulted in crippling low back pain and sciatica that went into my foot. >My local doctors in Washington state pushed me off on pain clinics that seemed to take endless shots in the dark.(ESI'S, facet blocks, ect) A periformus injection was tried..Effective for a short time but the relief wouldn't last. My pain specialist said,"I'm sorry but nothing I try seems to work." And then he said to go back to my Primary care Dr. for more direction. At this point I began to advocate for myself. My inlaws live in California so I flew in to Santamonica to seek treatment at the UCLA comprehensive Spine Center. I met with a Dr. A Nick Shamie who was spot on with his diagnosis from the first time I met with him. When I fell I damaged the ligaments that held the SI joint in place which resulted in sacroilitis and a Periformus syndrome. Long story short-he ended up doing a minimally invasive si fusion with ifuse screws. Afterwards he referred me to Dr. Aaron Filler in August of 2011. After a very thorough initial patient exam I returned to Washington state with orders for MRN imaging and a second botox injection. UW in Seattle,WA has MRN imaging so I made the 3 hour trip there to get the MRN. When the pictures came back severe inflammation was seen around the siatic notch. This confirmed Dr. Fillers diagnosis so surgery was scheduled for November 10 of 2o11 at Cedars Sianai hospital in la (WILL write more later)
Ally
I have been fighting the Piriformis pain for almost 3 months now.This is the punishment I get for all the years of basketball,jogging,and snowboarding with minimal warmups and stretching.After reading all of these posts,I feel really defeated.My doctors are worthless in diagnosing and treating the unbearable pain I live with daily.I can no longer drive a car because I cant sit .I wake every morning at 4 am with the pain in my left buttock that brings me to tears.My stretches actually seem like they make it worse and leave me with a "raw"feeling in my muscles.My life is at the mercy of this pain.I am trying to get the botox or steroid shot for now so that I can at least make it to work and to PT.How can something so simple hurt so bad?I need help and there seems to be no solution in sight.
Hey Allison
I am very interested to know about the outcome of your surgery with Dr. Filler. Could you please post an update ?
A brother in pain from Chile
-R
Thank God for this site & all of your appreciation you show of this excrutiating debilitating & relentless pain. So glad to feel less alone with this problem. My own story started in October 2009. I am a qualified nurse & midwife & mother of nine children. I worked 30hr weeks, had a good social life. did at least an hour a day at the gym & had so much energy that even doing fun things with the children was exciting & my lifestyle was in a great place for me, life was good. Then in Nov 09 I started to sduffer from sciatica. Having had short bursts of this during some of my pregnancies, I carried on waiting for it to subside as it usually did over a few days or at most a couple of weeks. Unfortunately, it just persisted over Christmas & the New Year & like most busy mums do – I ignored it & just put up with it! Sitting was excruciating, as was standing for any length of time. Eventually, in Jan, I stopped volunteering for homebirths or shifts on labour ward & only opted for postnatal ward each day at work. My reasoning for this was that the 14hour shifts in a room with a labouring woman involved lots of standing or sitting. Postnatal on the other hand, meant post op women & newborns needing constant observation & other new mums were ringing for help with breastfeeding, pain relief etc. so it meant being on my feet for 14hr days which lessened the pain a little. In Feb 09 my husband was taken into intensive care & put into an induced coma – so life was even more hectic for the next 6wks until her was conscious. As soon as he woke – I went straight into see him & he burst into tears! He was so upset at the sight of me. I had lost over 34 pounds & was walking with a really pronounced limp – and I hadn't even noticed how bad it had got – I was too busy to notice & just put up with it! Iwas totally unable to sit at all & the only wat to find some relief was to kneel on my hands & knees, so this is the only way I "sat" at home. Hubby made me promise to go to the doctors straight away. So in March, I visited my GP who immediately diagnosed a slipped disc & referred me to an orthopaedic Surgeon. After an MRI & x-ray, a definate diagnosis of two herniated discs was confirmed. I also had some scoliosis & some osteoporosis. Surgery to remove the large disc bulges was arranged for the end of June. Throughout all this time, the pain was getting worse & worse. I couldnt sit down at all, other than on my knees leaning forward. I even slept on my knees! I could hardly stand or walk as the pain hade slowly made me lean more & more forward to compensate. My husband tells me I used to cry in pain in my sleep! In May I was referred to the pain team by my surgeon. The team put me onto crutches to straighten my posture & they started me on regular voltarol & liquid morphine, which helped a little but I was still only able to sit on my knees & walking upright even with the crutches was agony. Sciatica down both legs, pain in my lower back, buttocks, thighs, through my calves right down to my heels . Sharp, intense, pins & needles like short bursts of sharp electric shocks continuously. I had the microdiscectomy op as scheduled & the surgeon was pleased with the result. The pain however, had not gone at all & I could still only sleep/sit on my knees,only walk with crutches only the, if I was taking the anti-imflammatories & morphine regularly. Isaw the surgeon 6wks after surgery & he just said he was happy the surgery was a success & didn't want to see me anymore! t
This even though I told him the pain hadn,t subsided. I was then left with a referral to physio which finally sent me appointment for August. I duly went along to see them & after a 20 minute assessment – which left me crying with agony-they said that I was in far too much pain for them to do anything with me. They then made a referral to the pain clinic for December. Off I went to the appointment & he upped my morphine dosage, started me on large dose of anti depressants & anti epileptic pills that all had proven side effects of helping with nerve pain. After taking all of these regularly until September 2010 & still being in constant agony & by this time, unable to stand let alone walk even with the crutches & nobody offered any help to me or my family.I was unable to bathe,wash myself,dress/undress myself & spent lots of time sleepy & confused due to the medication. My husband insisted I went back to my GP which I did at the end of Sept. He then referred me back to the pain clinic & back to the surgeon again! I saw the pain clinic consultant in January 2011 & he told me I looked like a 70year old woman (I'm 40!). He then added slow release 40mg morphine tablets to take twice daily, 20mg diazepam, 35MCG slow release, weekly patch to my ever growin prescription list! He also made an urgent referral back to the surgeon. I finally got an appointment with the orthopaedic surgeon in May 2011! He sais he could not see anything on MRI but felt that a spinal fusion & Laminectomy might do the trick. By this time, I had been off work for over a year & I had to rely on my husband & older children for every day care as I was totally "out of it" most of the time & could not be left alone. I struggled sleeping because of the pain so was prescribed by my GP, huge amounts of a very harsh sleeping tablets (75mg amiltryptiline) Because of the morphine, I was feeling nauseous constantly & itching to the point of being cover in raw skin where I had scratched off whole layers! S I was prescribed antihistimines & anti-emetics (anti- sickness) tablets to add to my daily medication regime! I was given the surgery in June 2011 & within a few hours of the operation – the pain came back with a vengeace! I had to stay in hospital for 5 days but then they refused to dicharge me until they had placed safe disability aids in my home. No matter that we had lived without them for last 18mths! I came home to bath rails, inflatable bath aids. heightened toilet seats & permenent handrails in both toilets, a new handrail up the stairs. Again the pain was back & now I was confined to a wheelchair as I couldn't put any weight on my feet because the pain was so intense, from the arches of me feet right up my calves,thighs,buttocks & lower back along with being constantly sleepy & confused due to the amount of medication. Unable to get a wheelchair upstairs, I was having to crawl around on my hands & knees as I was still in too much pain to stand or sit upright.My feet, knees & elbows are covered in calluses from having to crawl everywhere. My friends had all stopped visiting because I'd often fall asleep mid conservation or telling them things over & over that I had already told them & forgotten. My confidence dropped so badly that I just couldn't go out to socialize or family parties etc. I was left this way again until December. At this time I was referred to the mental health team & diagnosed with bi polar disorder & given even MORE medication. Four days before Christmas, I took a very large overdose as a suicide attempt. I just could not bear the pain anymore, as well being a burden to my family & losing my independence & dignity. I was released from hospital the day before Christmas Eve & went through Christmas & New Year still in agony & seeing no light at the end of the tunnel! Eventually I spoke to my GP yet again, & he referred me to community physio. In thbe middle of January, a physiotherapist came to my home & said that he had seen my MRI & he had no idea how I'd coped so long as he could see that all of my muscles had shortened considerably and the same with my nerves, He was very kind & told me it would be a long recovery process. He started me on a few exercises that had me in floods of tears because of the pain, but I so wanted to get back on my feet & out of pain. After a couple of visits & without warning, instead of him turning up for my appointment, a different physio appeared & told me he had taken over from the last one! Anyhow, he watched me move, saw my notes & immediately felt me at key points & immediately asked if I had heard of Piriformis Syndrome. I replied that I hadn't & he advised that I research it as it seems almost certain that this was what I was suffering from! Oh the delight of not feeling like a fraud! The happiness that I feel havin planning with the physio – a slow, helpful, program of physiotherapy with a view to using excercise & soft stretching to help me towards a path of hopefully much less pain & totally attainable goals! I would love to hear stories of people who have been diagnosed with Piriformis Syndrome & actually got to a place where the pain is manageable or even gone completely! I can't seem to find answers to how long this can last or if you suffer for life but the symptoms are lessened. I want to know if this is going to be a life long syndrome that can still flare up occasionally or goes completely. Sorry if I seem to babble on – but it is so helpful to see I'm not alone in this & the constant, neverending agony is not just me being a wimp but real. Thanks for listening guys – hope all your suffering is short x
I've had Piriformis Syndrome for 2 years and (just two days ago) diagnosed it myself, after seeing 12 Health professionals ranging from Neurologists to Accupunturists to Spine Docs, to Pain Management Docs, Psychotherapists to Chiropractors. I read Sarnos books too, by the way. But Sarno does not tell you how to stretch the Piriformis muscle from being overworked and compressed. Sometimes, it's just not that complicated!!! What tools did I use to diagnose it? A TENS unit, a pen, a sheet of scratch paper Google and YouTube. I've spent close to $20K (and I have insurance) trying to get to the bottom of this. I've had four MRIs, one EMG, 9 X-rays, a hysterectomy and a little over two years of hell. Oh, and I forgot to mention how many physical therapists I've seen and podiatrists for the associated foot pain that has developed from it. How do I know I'm correct? Because I found three extremely effective Piriformis Syndrome Stretches and have been doing them periodically for a period of 48 hours and the pain is leaving! Am I confident that I can now resume my long walks, hiking trips, elliptical machine and weight resistance training? Well, no..not yet. Do I need to see if I'm in the 17 percent of the population that has the sciatic nerve traveling directly through the piriformis muscle by having an MRN? Yes, why not? Do I need cortisone/botox injected into the piriformis muscles? Yes, probably…give these stretches a nice boost and lets go back to living again. If the nerve is traveling through the center of the muscle, then I'm all for the surgery to free it up. If it isn't (which I expect to be the case) then I'm all for stretching as many times a day as I need to, having an occasional hit with a needle if needed and beginning to return to a life with no chronic pain and money to spend on something besides Dr. Bills.
Dear Rosemary- Can you tell us what the three stretches are that you have been doing?
Hi everyone,
I just found this site today…I have been struggling with piriformis syndrome and sciatica pain on alternating sides for about 5 1/2 years now. My greatest sympathies to all of you, for I truly understand the toll that chronic pain takes on you. I used to be a really active person, I ran competitively for years, and loved hiking, running, biking, etc. I still can't look at a person jogging by without getting choked up.
The first year and a half I was in agony with piriformis syndrome/sciatica pain on my left side, I took mostly the traditional western medicine approach and reached the point where the doctor look's at you and asks you to leave because they don't know what to do with you. I also tried deep tissue therapy, ART, I think what finally worked was that I kept a tennis ball in all the places that I went (in my car, in my office drawer, next to my couch, etc.) and I would sit on it pretty much constantly, it literally took maybe a year or so of doing this, but it gradually became controllable, I even got to the point of being able to run occasionally. About a year and a half ago it came back with a vengeance, initially on the opposite side, and now for the last ~6 months primarily back to the left side.
I've tried just about every type of doctor, had 3 MRIs, cortisone shots in my SI joint and both piriformis's (none of them did anything), chiropractor and acupuncture were not useful and did not help with pain. I've totally changed my diet as well as added a bunch of supplements…I do the PT exercises when I can but I just can't seem to get the pain under control, and I can feel the muscles failing because of the pain, so the PT doesn't seem to be productive. I've been put on a variety of pain medications although none of them seem to really even touch the pain, even the supposedly hard-core stuff. The only effective one was prednisone, but apparently it is too potent to go on more than once. I agree with a lot of you that stretching typically seems to make it worse, even though most websites suggest stretching as the main solution.
I think what resonated with me most about these posts was the absolute dismissal by doctors, who, when nothing "significant" shows up on an MRI, or when they lightly stretch my leg straight up and I don't scream in agony, seem to think I am wildly exaggerating the pain and most seem to just want me to go away. I try not to blame them, I think the structure of the medical systems forces doctors into too tight of a time limit to be able to think critically about each individual, but I leave drained and feeling completely helpless. I welcome any advice on how to be a better advocate for myself…instead I find myself constantly "dumping" doctors when I see that look in their eyes of doubt. I also struggle with the mental side of the pain…you know when you get to the breaking point of not being able to take it, and then past it, and the pain still keeps going…I am not proud of where my head goes in those moments. I actually tried going to a psychologist for a bit, but I think it's one of those things that is really difficult for people who have not been there to understand.
Next steps…I'm thinking about trying one of those kneeling chairs, going back to living a constant life with tennis balls, and discussing botox with doctors (although the results here seem mixed). Thank you all for sharing your stories, it really helps to know that I'm not alone in struggling with this.
I do hot yoga and ironically, it actually triggers my Piriformis to become over contracted, so I have to do other stretches to overcome the intense muscle use during hot yoga. I have knocked-knees so I think its a structural complication that tightens my IT bands and puts too much stress on my piriformis.
In any case, there are stretches that have helped me:
(the first one is the least "professional", but the stretches actually helped the most because Im one of the 17% that has a sciatic nerve goes through the piriformis):
http://www.youtube.com/watch?v=tFtUgS69rPk&feature=related
http://www.youtube.com/watch?v=2qZ517Rw7ME
http://www.youtube.com/watch?v=hjTbU9-ogbU&feature=related
I recommend strengthening the abs and hamstrings, allowing the neighboring muscles to do more work for you, rather than the piriformis kicking in to help stabilize the body.
I also use a "Thumper" self massager and dig it in the muscle and that helps a LOT, but I usually need to do it each day.
Best of luck to everyone. =)
Zoe
Yes, Five months now with Piriformis Syndrome, which started out as a tingle in the back of my thigh, to a shooting pain through the butt and thigh and now 5 months later a burning sensation in the butt and thigh. When is this going to end? I have been stranded in public line ups and caught sitting in my vehicle at red lights. This burning pain becomes a sharp hip pain after long periods of standing or driving. I am still waiting for a miracle!…..the day when the sciatic nerve is dislodged from my piriformis muscle. Until that day i will keep on pounding my butt cheek with a rubber mallot!
It has been a year dealing with my husbands workers comp dr. Everything he has describe for the last year all indicates Piriformis Syndrome and now he is numb in the groin area. Still our doctor does not think he has this. Well if this is not it what is it? My husband is in constant pain and yet when we say your not looking in the right area what happened? He ordered the same test that he did 6 months ago, then the day after the last MRI he took an xray. I was like really? How in the world do I get someone to listen especially when it is workers comp? I am open to any suggestions at all.
Dear All:
I am another sufferer of so-called priformis syndrome. I went to see the Dr in CA who did diagnose me with this. However, most of the other doctor's have not agreed with his diagnosis. As someone mentioned in the forum it is really hard to correctly do the diagnostic test. You only feel the pain when you sit. Recently, my pain has increased substantially. My MRI neurography showed split priformis muscles with irritiated sciatic nerve. Interestingly, the MRI doctor did the diagnosis and reading of the imaging. Yet other doctors are silent? They either do not know how to read images or dumbfounded. In any cases, I am still not sure if I will go for surgery but I have been doing ART and massage therapy and somedays it works and other days it does not. I think it is worst than cancer. Because cancer sufferers eventually die if not healed but priformis syndrome sufferers lives with pain.
Hello, I have been suffering terribly for 7 years with piriformis syndrome. I was wondering if anyone has seen the website http://www.destroychronicpain.com? Also if it looks credible. I'm willing to try anything!
Hi,
I was so sad to hear of all your pain stories but also find comfort that I am not the only one suffering constant pain. My pain began 6 yrs ago in my right leg and gradually spread. It is now in my middle back, right buttock and leg. They think it is the piriformis causing the pain. Like everyone else I have lost count of the things I have tried to lessen the pain. I read one helpful bk called explain pain (butler and Moseley) it helped me understand what pain is about and how staying positive can aid recovery (not easy) I have been to some very dark places over the last 6 yrs, I am currently on anti-depressants and they are helping the mental side. I've Come to realise chronic pain doesn't just take it's toll on the body, it takes over your mind too. I am trying to stay positive and on the really bad days I am trying to remember my breathing and coping mechanisms (and not spend the entire day crying on the sofa). I am very fortunate to have 2 young children. Although it is so hard being responsible for them when I'm in such pain and I hate not being able to run around with them, they give me something to live for….I had Botox in th piriformis 2,wks ago, at the moment my buttock is more painful and causing a numb /painful right leg but I'm hopeful it will improve. E eryday I think of something I am thankful for, some days i am too fed up to do it but some days I can. My next plan is to attend clinical pilates classes, although I need to practise lying on the floor because t is too painful at the moment. I hoped the pain would be less before I started but …we'll see. Any way I have ranted enough. I wish you all well.
Hi,
I was so sad to hear of all your pain stories but also find comfort that I am not the only one suffering constant pain. My pain began 6 yrs ago in my right leg and gradually spread. It is now in my middle back, right buttock and leg. They think it is the piriformis causing the pain. Like everyone else I have lost count of the things I have tried to lessen the pain. I read one helpful bk called explain pain (butler and Moseley) it helped me understand what pain is about and how staying positive can aid recovery (not easy) I have been to some very dark places over the last 6 yrs, I am currently on anti-depressants and they are helping the mental side. I've Come to realise chronic pain doesn't just take it's toll on the body, it takes over your mind too. I am trying to stay positive and on the really bad days I am trying to remember my breathing and coping mechanisms (and not spend the entire day crying on the sofa). I am very fortunate to have 2 young children. Although it is so hard being responsible for them when I'm in such pain and I hate not being able to run around with them, they give me something to live for….I had Botox in th piriformis 2,wks ago, at the moment my buttock is more painful and causing a numb /painful right leg but I'm hopeful it will improve. E eryday I think of something I am thankful for, some days i am too fed up to do it but some days I can. My next plan is to attend clinical pilates classes, although I need to practise lying on the floor because t is too painful at the moment. I hoped the pain would be less before I started but …we'll see. Any way I have ranted enough. I wish you all well.
I share the pain! Laser therapy doesn't work either as I am currently trying it. I believe botox will be next on my list. Five years of pain and many many Drs. Some very rude Drs. at. that. There are a few Drs. listed that claim to do surgery, I'm keeping them in mind after I've exhausted all my options. Thanks so much for this site, there seems to be many of us!
Oliver,
Thank you for suggesting reading Dr. John Sarno's book 'Healing Back Pain'. As a physician, I was extremely skeptical but in severe, unrelenting pain for 4 months. Within a week of reading the book, contemplating the physiology proposed, and taking the suggested treatment plan, I was cured. It goes against everything I have learned in medicine and if it did not work for me, I would not believe it if a patient were to tell me. I owe you very much and do not even know who you are. I suggest that anyone in chronic pain read this book from cover to cover with an open mind and reflect very carefully on it. It worked for me and I was about to have surgery! Thank you again