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undiagnosed low back / right Sacroilliac Pain

Posted by @bethciowa in Bones, Joints & Muscles, Dec 6, 2011

Severe low back pain, last week I went to a Neurosurgeon, had an EMG, he said I do not have sciatoic. I've been in this battle off and on since 08. My bodied was jarred down onto a snowmobile seat really hard. Since then, I've had pain from standing, walking, and sitting. The last 2 months I have been in constant pain. I limp due to the right side of my low back pain. I've had spinal manipulations, epidural steroid injections, MRIs, low back xrays. I've been to 2 family drs, 2 pain specialist, an orthopedic surgeon and last week the neurosurgeon. I pointed to him the place in my back where the pain is the worst (when I touch it, it immediately makes me nauses) he said that is your SI joint your hip… going this afternoon for xrays… from what I've read, xrays don't show SI joint issues… I'm struggling with keeping my chin up … pain seems to distort my thoughts… I'm just not myself because of it. I sence some think that I'm not being honest or something about this nightmare I'm living. I'm a Christian, I normally wouldn't wish bad on others, why do I wish they could have this pain for a couple of months…

Tags: sports medicine, chronic pain, low back pain


Posted by @bethciowa, Dec 6, 2011



Posted by @gpm, Mar 10, 2012

Hey I have had issues with low back pain from car accident in s1 l 5 area and tried just about everything, tens chiropractic, Accupuncture, massage, and found that exercise riding recumbent bike helped out some, but inversion therapy relieved the pain substantially over time allowing space between the joints and relaxing tight muscles in lower back hope this helps!


Posted by @bethciowa, Mar 10, 2012

Thank you!!! I have a recumbent exercise bike, I've been afraid to do it.... I'll check with the physical therapist..... The specialist said its iliopsos.~?sp tendonitis I am doing better but not great... Thanks again!


Posted by @gpm, Mar 11, 2012

Inversion helped me the most, I believe it allowed space between joints for blood to flow more freely to heal and relieve the pain and tightness in the lower region


Posted by @bethciowa, Mar 12, 2012

Thank you, I honestly don't know which way to go as I don't think any of the Drs I've seen are sure of any of the diagnosis they have told me. The inversion sounds good.....


Posted by @rajan, Dec 13, 2011

I have been experimenting on pain relief from various conditions for last 8-9 years. I was told that I have severe osteoporosis about 8-9 years back. Today I have perfect bones. I am actively playing competitive level badminton for last 5 years now. I understand that your pain is the result of some accident. If a person is extremely dehydrated then drinking 6 to 8 glasses of water for 2 days after accident may help a lot. But if a person has been drinking 6 to 8 glasses of water or other liquids for last few months or years then the best thing to relieve pain would be to give up all liquids and water for 24 hours and rest in bed. After 24 hours one should get relief from pain. But since it is cronic case the pain will return as soon as u start water and other liquids intake.

So the best thing would be to give up water and liquids for 24 hours then resume 2 to 3 glasses of water intake (1 glass 1 hour before each meal) for next 3 days and then keep repeating this for next 2 to 3 months till one gets full relief.

Giving up water and liquids for longer durations at one go may cause organ failure. Do risk that even if u get complete relief in first 24 hours.


Posted by @bethciowa, Dec 16, 2011

Thank you Rajan for your reply, I agree with hydrating. What are your thoughts on my right hip being the cause of low back pain?


Posted by @beth777, Dec 16, 2011

SI joint issues can be seen on an x-ray most of the time, for example, my SI joints are calcifying, and that was found on an x-ray. So, I hope you received an answer from your Dr after you had the x-rays done.

The SI joints aren't actually a "joints" like knees, they're thick tendons that hold the sacral bone to the ilium (near the hip), I believe.

If you do have calcifying SI or inflamed SI (Sacroiliitis), it should show up on an x-ray. If not, a flouroscopy under x-ray could help you get a diagnosis, possibly?

You mentioned Sciatica, I think? These can sometimes be helped by nerve blocks. But, I understand that you received no relief from an injection for Sciatica, is that correct? If you didn't get relief from the injection -- sometimes it can take days to make it better -- it sounds like the Dr may have given you an injection in the wrong location? The pain from Sciatica begins in the upper part of your gluteous maximus, and often the pain travels down the back of the leg. Is this what is happening to you?

Just to let you know my experience, I've been dealing with progressing spine & pain problems for over 15 years; my problems began when I was considered "too young for any kind of serious spine trouble." Well, I finally learned at the age of 36 that my neck was severely damaged. It took me years to get anyone to listen to me. By the time I was seen for C-spine probs, I needed surgery, STAT.

In my case, things have spiraled downward since I had the Cervical Fusion + Diskectomy @ 4 levels. In the last 5 years, I've developed 15 bulging disks, 5 herniated (C-5 to L-5), and many, many other spine & pain issues (CRPS).

You're not alone in your pain. No one will understand how you feel except for us in the same boat as you are, and many Drs are ready to write people off that are under 40. I can only function when I'm on a variety of pain meds, such as methadone, gabapentin, Celebrex, Tylenol, Flexeril, and l still want to die on certain days. Well, I wouldn't be able to make food for my kids or do anything if it wasn't for appropriate medication.

Sorry you're not sleeping, I've been there, too. And like I said, you're not alone. Please reply if you can, and let us know what was found on your x-ray.


Posted by @bethciowa, Dec 16, 2011

Thank you for your reply. I went to the University of Iowa, and seen an Orthopedic Surgeon. He reviewed my hip xrays , MRI of my Lumbar he then examined me. Moving my legs, checking my strength etc. He pushed on my right bursa, and it was very painful. I told him I can't lay on my right side. Most of my pain is in my low back. He said, my hip has some degeneration and that is what is causing my low back pain. He gave me a not so pleasant injection of Lidocain and Steriods into my right bursa. He said if you get relief, then we know we are treating the right thing. I did get a little relief for a few hours. I start physical therapy tomorrow, he thought that would get me back to normal. I'm a bit sceptical as my most severe pain is from L3~L4 & L4~L5 one the very right side of my lumbar. The reason I thought it might be my SI joint, is because of the jarring my body took on the snowmobile. I don't want pills, I want my life back!!


Posted by @beth777, Dec 17, 2011

I have the same issue with my right hip, inflamed bursa, degeneration, can't lie on my right side -- I totally know what you're talking about!

I would go ahead with the Physical Therapy, but make sure you tell the PT that you're skeptical, and that you're very concerned about your low back & S.I. Tell the physical therapist all your concerns, the more people who know what you're going through, the more help you'll get. Keep up with the PT as long as you can, even get a new Rx for PT if your low back is still bothering you.

Have you been prescribed a TENS unit? I use mine often, it's great for distraction when I'm in a bad pain episode, and it's also helpful when I feel an episode is about to begin.


Posted by @bethciowa, Jan 4, 2012

Beth, I have not been prescribed a tens unit, but they put one on my back at PT and it does help. I still can't stand for very long, I'm hoping to try and go back to work in a few weeks. Thank you so much for your reply!


Posted by @volgal95, Dec 20, 2011

The body is such a complicated structure. I was in pain for 12 years. 12 years of hearing it was this or that trying every treatment you can think of. I too had sever low back pain. It throbed and raidiated down both legs. I couldn't stand too long, sit too long, forget exercise...I went from a very active person to someone crippled with pain most of the time. I missed worked, missed out on family time etc. Nothing worked, until I visisted the Mayo Clinic. After many tests I was diagnosed with Chronic Myofacial Pain Syndrome and some aspects of Fibromyalgia. I'm on Cymbalta to help with the pain, Trazadone to help me sleep and to handle the occasional melt down I have to take an antianxiety med. Occasionally, the pain gets to so bad I have to go to the ER and get a muscle relaxer. So, low back pain can be caused by a whole host of things...never thought I would have gotten the diagnosis I did. Hope you get an answer soon.


Posted by @bethciowa, Jan 4, 2012

Volgal, thank for for your reply, I too was a very active person. We have considered a trip to Mayo. Your situation sounds very much like mine!


Posted by @ltmom, Jan 23, 2012

hopefully you can get better answers at Mayo. Chronic pain can take you down a lonely path. But... there is hope and others out here to heIp you along this path. I to have this terrible chronic pain and am hoping for relief soon. I also am a Christian and like you, don't wish my pain on others, but at times I feel others might understand better if they had a day or two in our steps


Posted by @bethciowa, Feb 28, 2012

Thank you for your reply. I am doing better, not great. I'm going to aquatic therapy now, and did physical therapy for a month before the aquatic. I'm still on pain need need, a new one it helps but doesn't make me sleepy. I'm back to work part time. My boss/job have been very good to me, for that I am grateful. Trying to lose weight, and remain posive, counting my blessings...


Posted by @anon27855854, Feb 28, 2012

Hello. I understand all your pain. I am experiencing that too. I have pain in my foot after walking 15 minutes sitting in my buttocks and i feel my hips are popping out pain all over I have diagnosed with chronic pain . E.R. Diagnose me Anxiety, Depression, Chest pain, i cant breath sometimes i need oxygen, mine is more on the left side my thigh on the left hurt I had a test for EMG that test was torture but I made it I have pain every morning all over my body.headaches cold coughing bad I am fatigue all the time .i went to the best orthopedic specialist maybe there's something broke in my back he did an x-ray on me .why I'm having this pain questions myself whats wrong with me? I do really need to find out right diagnose for me so i know i can best handle myself i have ups and downs setbacks,battling this illness crying sometimes, become numb , cold, i feel that nobody is listening, until i ask for many peoples help reading more info and books from the library this support groups is best for me knowledge is power for our medical problems because I do like to get 2nd opinion because I am in denial and I have trusts issues .My best orthopedic said there's nothing He can do on my side. So I went to neurologist he diagnose me with athritis, fibromayalgia, radiculopathy and sleep issues, and others then my primary doctor diagnose me with radiculopathy,high blood pressure and fibromayalgia . I ask myself now what are you going to do ? Do I hold on or do i give up? I went to psychologist and went to talk therapist soon I'm going to a psychiatry for bulimic issues and now I'm scared for another MRI .I had it in 2010 not fun for me. I Keep telling my self on and on I have to be strong for my children have to loose weight it is a battle for me everyday I pray to god take care all of you I know there is hope out there we have to strive finding a way to get out to this chronic illness . Good afternoon . Have a great day .


Posted by @bethciowa, Feb 28, 2012

Thank you for your reply. I am doing better, not great. I'm going to aquatic therapy now, and did physical therapy for a month before the aquatic. I'm still on pain need need, a new one it helps but doesn't make me sleepy. I'm back to work part time. My boss/job have been very good to me, for that I am grateful. Trying to lose weight, and remain posive, counting my blessings...


Posted by @bethciowa, Feb 29, 2012

Today I feel good. I didn't go to therapy today, I was exhausted so I took a nap. My hip is feeling better today, I didn't have pain in my thigh last night which was awesome, I slept well. Prayer and blessing to all those living with pain.......


Posted by @petere, Mar 1, 2012

I am sorry to read of your misfortune. I don't know of any advice off-hand that might bring you relief, but if I come across any I will be sure to share it with you.

In the meantime, you'll be in my prayers, and I sincerely hope you're able to find relief sooner rather than later.

PamEganNP likes this

Posted by @bethciowa, Mar 1, 2012

Thank you Peter!


Posted by @bethciowa, Mar 1, 2012

Well, today I am in pain, for about 45 minutes it was severe. Im laying down now for about an hour or so... pain @ L3~L5 level the right side of my spine to about 2 inches to the right. Then down my right buttocks down my right thigh, a throbbing piercing pain @ times.....the front of my right hip bone is extremely sensitive. About a week ago I had a burning pain on the right side of my right thigh, a few inches above the knee Going to my Dr tomorrow and to Orthopedic Dr next Wednesday.... It seems like an incredibly long time to wait, hello ice packs and sweatpants. Ugh!!!


Posted by @aglassofsherry, Mar 11, 2012

I fell down in the bathroom 3 years ago and broke my sacrum. Since then I have pain sitting. However, almost 1 year ago, I started having pains in my hands, so I was referred to a Rheumatologist. I had an abnormal blood test that they questioned if I had lupus. After several more tests, lupus was ruled out. in the mean time, I developed pain in my feet, shoulders, wrists, calves, thighs, neck, lumbar and thoracic spine, abdomen ears and face. The rheumatologist said I probably have Myofascial pain syndrome. He said to check out my digestion problems and overall health by a family physician. My new family dr is an Internal Medicine dr and says I am healthy. She started me on Lexapro, an antidepressant, and referred me to a physical therapist. I just finished 6 weeks of strengthening exercises, self Myofascial release exercises and posture training. The therapists never treated me gently and treated me like I was an old lady who needed to get in shape, not like a patient with pain. I am not overweight and have always been a hard worker who exercised somewhat regularly. I have also been feeling like the drs and therapists don't care or really believe me.I have read Integrative therapies for Myofascial Pain, Fibromalgia and chronic fatigue disease by Celeste Cooper, which was very informative, and am presently reading The trigger Point Therapy workbook by Clair Davies. Hopefully whith continuation of some of the strengthening exercises my physical therapist taught me, plus the self trigger point therapy, I can start feeling better, along with constant prayer. Talking to others with similarities and understanding of the pain should also help with my depression. Let's keep in touch!


Posted by @bethciowa, Mar 12, 2012

I might try inversion, that sounds like it would be good. I really don't know which way to go.... Im in aquatic therapy with ladies much older than I..... Walking and steps in the pool.... Best wishes to you!!!

Posted by Anonymous-073ff441, Apr 5, 2012

Again, my pain continues. Waiting for a steriod injection, I had about 10 days of agonizing pain in my right SI Joint, the last 72 hours of that 10 days was pure hell, pain had completely taken over. I spent hours literally, begging God to make pain go away. For the first time in my life, I had thoughts of suicide. I thought about how, where, all of it. Monday morning, April 2, 2012 (day 10) both of my sons (26. & 19) were here to help me, that time with my sons made me sad, to think of the thoughts I'd been having. How could I be so selfish and put them through that?? I thought about how my years of low back pain has already cheated them. The frustration of not knowing where to go to get the help I'm so desperate for. Tuesday April 3rd, the day I had been waiting for the 2:00 appt with the pain doctor. The 50+ mile ride was not going to be easy. The last 72 hours I could not get from down to up , up to down, take a step or stand without screaming out what I would call primal screams from the very depths of my core. My husband drove me, in the waiting room tears, ran my down cheeks like a running faucet. At 2:30 I get called to go back, its finally my turn. The nurse asked me the usual questions, I responded I had my pain notebook with me and I have kept good notes throught out the last 8 months. She went out of the room, another nurse came in and chewed my ass because I had seen 2 pain doctors in 2011... She said that Dr Sykes might not see me because of it... Oh my God.... I said to my husband, just take me to the ER, I cannot do this! Then the nurse said, "I will talk to the Dr & see what he says... Good Lord help me!! We waited a few minutes and Dr Sykes came in, he explained that "you don't go to 2 different Drs. (I didn't realize that was a rule). I explained to him that in Sept of 11 when I went to the Dr, I had called for an appointment an he (Dr Sykes) couldn't see me for 6 weeks, th. Other Pain Dr could see me the next week....what would you do?? The entire time I'm crying, my nose was thinning & I was in excruciating pain... He did inject my right SI Joint, gave me a shot for pain, and a couple of trigger point injections. I had some instant relief from the lydicane (?sp) the trip home was rough, but better than the trip there. I go back in 2 weeks for a follow up. Right now I'm 2 days post injection my pain level has dropped to about 6.5~7 the tears have stopped. PTL! Yesterday I went online and requested an appointment with Mayo Clinic in MN, as I know the injection didn't "fix" me permanently. My femur aches, my right hip is painful, but my low back is so much better.... Love peace hope faith to you all....Beth


Posted by @zorone, Jul 8, 2012

Beth Clowa

I have had a lumbar fusion L-2 thru L - 5, done Dec of 2010. Helped a lot of the pain, except SI Jt area on the right side. P.T. says it is like a knotted muscle. Still looking for cause. Pain doctor doing trigger point inj. July 12. Will let you know how it goes!

Marcia/ ZORONE


Posted by @bethciowa, Nov 14, 2012

I'm still in the battle, I'm now a patient at Mayo Clinic. Going back in 2the weeks...

Posted by Anonymous-64c0a5a4, Aug 2, 2012

Have you researched athletic pubalgia?


Posted by @neveblue, Sep 6, 2012

Hiya all. I know the pain. I have had it since I was pregnant with my daughter 21 years ago. It was off and on and I didn't know what it was, but last November 6th I woke up to unbelievable pain on my left side. I was scared and alone and I tried to walk to the ER as I only live a block away and could not make it past my neighbor. My primary care physician did not send me to a specialist so I suffered for 2 1/2 months before I finally just took matters into my own hands. I went to a specialist and was pain-free with a nerve block injection in a week! thank goodness.

What a terrible pain it is and indescribably to people who don't know, although most of my friends and family have been absolutely lovely. I wouldn't wish this on anybody. I am so completely angered by, what I feel, negligent behavior of my Primary Care Physician of 6+ years! They thought I just wanted Vicodin, I think. I had never asked for pain medication once in 6 years, but suddenly I'm a Vicodin Addict.

I was in the best shape of my life, training for a marathon, eating healthy, living well, no smoking or drinking. Then BAM! Instant excruciating pain. I kept a pain log thanks to a local Chiropractor down the street. I was getting nowhere with my PCP and literally walked down the street to Dr. T's office and he helped me even though he couldn't help me. Weird, I know. He is the one that ordered the MRI, which showed 2 herniated disks. My physical therapist helped me with alignment and exercises to strengthen my stabilizing muscles. I finally got a Nerve Block Injection and was pain free for about 3 months. I had surgery on my disks 3 weeks ago and still have the SI Joint issue. Even the anesthesiologist for my surgery said some doctors still do not acknowledge that this joint issue exists!

I could go on as I'm sure most everybody here knows. Back to the NeuroSpine Clinic I go. I also read recently that a Physiatrist may be an option for SI Joint Dysfunction. There needs to be some sort of patient advocacy program so people don't get accused of being an addict when they go to the ER in pain. I had to go twice within 2 hours of each other and couldn't walk out of the ER either time I was released. Can hospitals not admit patients for pain?

I want to thank everybody for sharing their stories. I don't feel so alone.


Posted by @bethciowa, Nov 14, 2012

I've not been to this site for some time now. Thank you for sharing your story. I'm now a patient at Mayo Clinic. I have another appointment there the end of the month... Best wishes!!!


Posted by @lob, Feb 20, 2013

It sounds like AS , check out this web side if your symtom match its hard to diagnose AS patient , good luck

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