FRUSTRATED WITH MY DOCTORS...WONDERING IF I'M CRAZY

by Rhonda
( Arkansas)

I have been suffering from low back pain on the right side for about 10 years now. I thought at first that it was just due to bad posture. I have always had a desk job and sit at a computer all day, which makes it worse.

I have not had any major back injuries but I have had several automobile accidents over the years. Also, my daughter is 10 years old, which makes me think pregnancy could have something to do with it.

I always felt like my hips were out of whack. It has gotten progressively worse over the years and has become unbearable at times. I started out seeing my family physician. He prescribed muscle relaxers and said everything would be fine.

The muscle relaxers did not help and he refused to do any X-rays, stating that it wasn't necessary. So I found a new primary care physician and she suggested I see a chiropractor because the pain in my back felt like it was "stuck" and needed to be cracked and popped.

I have been seeing a chiropractor for a year now, at least every two weeks. I have had relief in other areas, but never in the low back on the right side. The pain now radiates into my buttocks and down the back and side of my right leg.

I have seen an orthopedic doctor, have had 2 MRIs — one of my low back and one of my pelvis. The orthopedic doctor diagnosed me as having degenerative disc disease and arthritis in my facet joints.

He sent me to physical therapy 3 times a week for 4 weeks which cost me $800.00. That provided absolutely no relief whatsoever. At my follow-up appointment the orthopedic surgeon said he could not see anything he could physically fix so he sent me to a physiatrist who specializes in physical medicine.

She diagnosed me with SI Joint dysfunction and a gluteus medius tear. She sent me to have two SI Joint Injections 4 weeks apart. The dr. that performed the injections stated that he saw on the MRI that I also had a mild herniated disc, which was the first time I had heard about that.

The injections provided a very small amount of relief, but the pain never went away. After a couple of weeks, the pain was back in full force. I went for my follow-up with the physiatrist and was told that there was nothing else she could do for me.

I have been doing exercises such as planks and pelvic tilts. I have been seeing a massage therapist for about 2 months which provides little relief.

I just went to see another orthopedic doctor today and was told that there is nothing he can see on the MRI's or bone scan that requires surgery. I never said I wanted surgery, I just want a correct diagnosis so the pain will go away. He is sending me to a doctor that specializes in physical medicine and rehabilitation.

I am extremely frustrated and while I try to keep a good attitude it is very hard and sometimes I get very depressed.

Since the doctors can't find anything wrong it makes me look stupid to my friends and family, so I try not to complain to anyone about it. I feel like I have tried everything and don't know who else to turn to.

Hopefully stumbling on to this site will be the answer for me.

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Jun 05, 2012
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You are not crazy
by: Pam

Hello Rhonda,

I have been struggling with the same pain now for 4 years and have seen so many doctors I can't even keep count them anymore. I thought I was going crazy. I’ve had a 3 MRI's, multiple X-rays, and a bone scan and all my tests are coming up fine. I even had multiple blood work taken and nothing!

I am on anti-inflammatory meds, pain meds, pain patch, and Neurontin. My doctors seem to think it’s my nerve but I think its something else. I have just recently stubbled across this website and now am researching bursitis.

I have more doctors appointments next week. My orthopedic doctor has been the only one so far to help me. I’ve had multiple injections in my SI joint and facet joints. I even had a nerve burn ablation done back in April but no relief whatsoever. I can't take the pain anymore.

I’m very depressed and I’m not able to enjoy any activities like I used too. I am a 47 year old women worrying that I’ll have to deal with this for the rest of my life. Thankfully I have a very supportive husband who is helping me get through this. I hope to get relief soon.

Trust me when I say I know what you are going through and feel your pain. I thought I was the only one going crazy! I am so determined to figure this out myself and get the help I need even though I have had days when I just want to give up. I just want my life back!

Pam
Stafford Springs, CT.

Jun 19, 2012
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Me too
by: Sharon

I'm in the same boat! Had sore hip/buttock/leg and shoulder and neck pain for about 8 years. Had MRIs and injections and been told I have ITB issues then SJI. However the PT has taught me (my partner does it) to massage my psoas and this brings tempory relief but nothing permanent. It also feels that my shoulder and ribs are involved somehow. When psoas is playing up I get very constipated. About a year ago sports medicine doctor said I had glute medium and gemelli problems and I was given several injections that didn't really make much difference. Later he injected a ligament ( I think) near the SJ and this brought immediate relief for a couple of weeks then back to normal. All specialists seem to say that psoas is very tight but then treat other things. I think the psoas or iliac psoas is the cause and the other things being treated are the result of the psoas problem. I can't seem to find anyone who specialises in the psoas - it seems very overlooked.

Jun 25, 2012
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Me too. Wish I could help.
by: Jeremy

Your page is like reading a biography of my pain. Except, I am a 24 year-old male. The pain started my senior year at college (21) and has been going on for three years now.

I have tried everything you have tried. I've also had the misfortune of doctors not just ignoring me, but accusing me of simply being a pain medicine addict. Some have even called other doctors in the area to "warn them" about me.

I'm supposed to be half-way done with law school right now, but haven't even been able to start because the pain is so severe. Ever since it started, it has hurt me 24/7/365. I was very athletic beforehand and can do nothing that my friends can do. I can't even keep up with my parents and grandparents.

It's very frustrating and depressing. I feel completely held hostage by it. Like you, MRIs and treatment have revealed nothing, so people keep thinking I'm just making it up, or that I'm crazy or something. Don't know what to do.

If you find help please let me know. I will do the same! Good luck. It seems like the people I know with chronic pain have some of the greatest hearts. I don't understand it.

Aug 06, 2012
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The same here
by: Marcin

I wish I could bring some help. My story is exactly the same. SI joint, weird hip problems, severe depression. No kind of conservative or alternative can help me. Lost all my money on treatments which brought little or no relief. There seams to be some problem with lower part of psoas and iliacus. For over 10 years. I'm 29 years old now and I have lost the best years of my life for this.

No kind of stretching, strengthening, relaxation, massage, manual therapy brings relief. Last time I went to doctor I said to her that I could not start a family because of this constant paint that I have. She claimed that: "If you had family you would not have time for pain". This was the last time I saw a doctor.

From all my heart I wish you good luck.

Feb 09, 2013
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5 years of crazy symptoms and still going
by: DET

My symptoms started out with itching on my outer left thigh, but nothing was there. I haven't heard anyone else mention itching.

Then tingling and burning and sharp pain, sensitive to touch and temperature. The doctors said it was restless leg syndrome, which I knew it wasn't, and did X-rays and MRIs.

I had a cortisone injection in my hip. Over the past 5 years I have become very frustrated with my doctors. Sometimes I just stop bothering trying to get it figured out.

I really don’t have much back pain and if i do it is in just one spot in my lower left back. I’ve been prescribed Neurontin, Amitriptyline, Zolpidem for sleep because it wakes me all through the night.

I’ve had an office job since 1979. I’m 53 and in good shape otherwise. I started seeing a chiropractor last week because nothing is working and the doctors are always stumped.

I too feel so stupid when giving my symptoms. While at the chiropractor's office they mentioned iliopsoas so I got to this sight when looking that up.

Feb 10, 2013
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End of My Rope
by: Jeremy

I am at the end of my rope here, and I really don't know what to do. It's coming up on 3½ years now that I've had this agonizing pain 24/7/365 (and I don't mean that as a hyperbole).

The pain has literally ruined my life. I suppose I was "lucky" that the pain came on during my senior year of college. I was a perennial Dean's List student, and after I got hit by this truck I call lower back pain I scraped by with a couple of Cs, and had to drop two classes (which in my four years at college I had never dropped a class). I was able to finish those two classes over the summer and also get Cs.

It has been so depressing to be in so much pain and to see all of my college friends beginning new careers, getting married, moving on to grad school. I'm supposed to be in law school right now, myself.

One of the worst parts of the whole thing is that because my sister had an issue with drug abuse, my father, as well as his entire side of the family assumes that I fall into the same category as my sister. It doesn't matter to him that I have never picked so much as a cigarette in my life. I've never used ANY type of illegal drug, and I do NOT use the pain medication to get high.

My pain management doctor is reducing my dosage in half next month, while the current dosage barely does enough to allow me to get out of bed and do light household chores. His reasoning is that "someone [my] age shouldn't be experiencing this kind of pain, and shouldn't be on pain medication."

I want to smack the man upside the head. I'm well aware someone my age shouldn't be going through this kind of pain, so PLEASE HELP ME. I have ALWAYS been the kind of person who turns to any kind of medication as a very last resort.

With the degree of pain that I'm in right now, and the concurrent depression, I can't even imagine how depressed I will be when the doctor greatly reduces my medication without any improvement in my condition.

I’m scared that I won't even want to go on living. I’m 24 years old, and I'm missing the prime of my life in complete misery. PLEASE somebody help.

If somebody here has an amazing doctor that is actually interested in discovering the root of the problem, please contact me. As I said, I don't WANT to have to take pain medication, but until someone can help me I don't see much of an alternative.

PLEASE HELP :(

Feb 11, 2013
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Message to Jeremy
by: Stephen from Lower Back Pain Answers

Hi Jeremy,

Your recent comment got my attention and I'd like to try to help if I can.

I am not physician but rather a Neuromuscular Therapist specializing in chronic and recurrent musculoskeletal pain.

If I'm am able to direct you at all in a helpful way it will be because the causes of your pain are rooted in the musculoskeletal system. And as you may have read on the home page of this website, allopathic physicians receive little training in this area.

Please contact me through the website for my private practice in Burlington, Vermont: Neuromuscular Therapy of Vermont.

At very least I may be able to steer you in some directions you may not have tried yet.

Best,
Stephen O'Dwyer
LBPA Founder

Mar 01, 2013
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EXACTLY my symptoms
by: JoeW

5 years ago it started after a hip replacement. I am 62. I went thru every test there was including a painful thing called Discogram.

At that test I was told I needed a spinal fusion of L5-S1, I let them do it at UCSF. What a F-ING mistake! It is worse now, I have been on Oxycodone for five years, tried many other meds. And of course the meds don't work after a while. It sucks.

I am on disability and cannot move very well thanks to the fusion. The pain is horrible, as is the addiction to meds. This is the first time I have heard symptoms that match mine. I wear a TENS unit. Being weightless in a warm pool helps a lot. Is it a very sad way to live.

Jul 08, 2013
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Everyday is Pain
by: Dawn

I am 39 years old and I first began seeing doctors for my pain since 2000. The pain started with the psoas muscles, but has since extended to my lower back and gluteal muscles. I have a 2-page spreadsheet of the doctors and "specialists" who I've seen and the procedures and tests I've undergone. Nothing and nobody has helped me. I am in debt for my medical bills and treatments. I'm tired of being told it is just stress.

It is a constant band of pain around my waist. The only thing that changes is the degree of pain I am in at the moment. I am depressed and it is hard to function at work and care for my baby. This pain has taken over my life.

Does anyone know of any medication that can help?

Sep 08, 2014
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ditto
by: Anonymous

This SI joint disfunction is ruining my life too!!!!! And my insurance doesn't cover anything si joint related I have to pay out of pocket for injuections. My pain Dr. does a procedure where they burn the nerves around the joint. Anything new since you posted this?

Oct 30, 2020
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Be resilient and determined
by: Jerrid

Hello everyone,

My name is Jerrid and I've struggled with similar problems for the last year. I feel imbalanced and constantly feeling nerve-y and soreness symptoms around my right ilium and up through the right of my thoracic spine. Sometimes it is debilitating and I can barely walk. I continue to struggle to this day. I constantly experience symptoms. Based on all of the evidence I can accumulate, proper physical therapy, rest, breathing, and honestly, consistency and determination on our part is what will resolve (or at least limit) the problem.

Many of us sit for a large percentage of the day, I have noticed, or had some experience that led to instability. The thing about sitting for long periods is that it can create muscle, fascial, skeletal, and other types of dysfunction. Throughout all of that time sitting or whatever it is that happened, even with good posture, it is likely that deeply-rooted neuromuscular patterns have developed. These patterns can become problematic over time and create symptoms of pain and discomfort of all sorts. They "re-wire" your muscles, so to speak.

My belief that these issues can be solved and we are not stuck with them for life stems from understanding the dysfunction and speaking to well-versed professionals. The thing about this neuromuscular dysfunction stuff is that it is not something that developed over night. It is likely that I, as well as many of you, had hip movement dysfunction, low back instability, or other problems PRIOR to having the crippling symptoms that led to the great degree of pain and discomfort we currently experience. I am referring to a simple hip flexor or joint "pop" while doing a squat or other "quirks" of our bodies. These patterns are the ones, I believe, lead to the psoas, quadratus lumborum, multifidus and other muscles becoming inhibited or compensatory. They can compensate for other weakened muscles (gluteus muscles, etc) and become sore, tight, weak, overworked and more. These patterns often start with acute injury or sitting. Our bodies are then trained to work this way and our nervous system reinforces the problematic behavior, which causes even more pain). It is a viscious cycle, but one that might be broken.

I have had some success in physical therapy, but I have not reached the finish line (nor do I think there actually is a finish line). I think that because these patterns do not arise over night, they will not be fixed over night either. Your body will become a full time job for a while and you will experience doubt about the efficacy of your physical therapy or treatment, and in some cases the concern is warranted if the treatment isn't adequate. You may be disheartened when your symptoms worsen and sad when you get out of bed feeling ten times as poorly as you did when you got into it. However, none of these hurdles should stop you from trying to get better. In terms of damage and dysfunction, you may as well have been hit by a truck and endured serious injury to many parts of your body (and some of you actually have). It will take time and dedication to work through these problems and it may never end 100%. I am about 25 weeks into physical therapy and I slide back every couple weeks it seems. I was rock climbing, backpacking, cycling, swimming, mountaineering, and skiing before I started to have these symptoms. I now do NONE of those things and simply workout at a gym primarily for physical therapy exercises. Before that I was a graduate student sitting on my butt for 50+ hours a week stressing out trying to complete my thesis and grade 70 undergraduate's exams and essays.

The world we have developed for ourselves as humans in an industrial (post-industrial? Whatever...) is not conducive to physical or mental wellbeing. I believe I developed some TERRIBLE habits during my time in college and graduate school, and the authorities ruling that institution are not concerned with student's wellbeing. I did not receive adequate resources or funding to address my ergonomic concerns. It is just as likely that many employers are not concerned with worker's wellbeing. Consequently, it is our job to try to work through these problems. A barrier to solving them will be education. I recommend learning as much as you can about your specific issue and then finding a treatment pattern starts to alleviate symptoms.

Anyway, I know many of you struggle, but please do not give into this pain or dysfunction. You can beat it. There is no magic to this. It is a logic problem with many moving parts. Be committed and do not stop being active no matter what. You might need to modify your activities greatly, but stagnation is essentially an acceptance of defeat. Good luck.

May 31, 2021
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Bursitis
by: Mandy

Your not crazy it’s ruining my life can hardly walk have steroid injections but they only last for so long waking me up in the night the pain is horrid has moved now in the bottom of my back feel so depressed just go to work cos I have to hardly go out

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