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Gluteal Pain, Ischial Tuberosity Disorder


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Old 10-29-2015, 03:51 AM   #1
Mitt8
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Gluteal Pain, Ischial Tuberosity Disorder

Hello everyone,

I have been suffering from pain on the gluteal region (it worsens when sitting), sitz bones (ischial tuberosity), upper thighs, lumbar region and feet (calcaneum) for almost 2 years now. I'm 26, have always been healthy, but I have to say this condition is affecting my quality of life SEVERELY.

I have researched a lot iabout my ailment, read many scientific articles, have been to almost 50 doctors and still I haven't received a proper diagnose. I have already done many exams to investigate the source of my pain, namely: MRIs, CT scans, electroneuromyography of the perineum/legs, dozens of urine and blood exams, etc.

I (together with some physicians and physiotherapists) have come up with some diseases which are compatible to the symptoms (burning pain on the pelvis, ischial tuberosity, perineum, pubic bones, upper thighs, calcaneum), such as:

1. Pudendal nerve entrapment (negative result after an ENMiography)
2. Ischial Bursitis (negative after a MRI scan, no bursas inflamed)
3. Hamstring Tendinosis/Tendinopathy (negative on MRIs)
4. Prostatitis (no bacteria detected whatsoever, although I have taken antibiotics - PSA normal)
5. Autoimmune diseases (Reactive Arthrosis, Ankylosing Spondylitis - negative)
6. Lyme Disease (inconclusive, took doxycicline for 3 weeks though)
7. Irritable Bowel Syndrome
8. Sciatica/Piriform Syndrome (hypothesis ruled out after intense physical theraphy, pilates for over 11 months)

The only exam that showed something not normal was a discreet enthesitis on both heels (calcaneum). That's why rheumatologists thought it could be some autoimmune disorder. Apart from that, everything seems pretty normal. My vitamin D levels are low too, but I have started taken vitamin supplements and my vitamin levels (not only D) are almost close to normal.

I was wondering if someone with similar symptoms have already received a light on that. I have visited a lot of forums on the internet with ppl complaining about the same things, but never read/learned about someone who received an ultimate/precise diagnose., nor did I found anybody who actually recovered from that.

Medication taken to date: Lyrica, Prednisone, Cymbalta, Cyprofloxacine, Doxycicline, Arcoxia, Sulphasalazine, Fluoxetine, Naproxen, Cyclobenzaprine

Looking forward to a sympathetic response/friendly contact.

Regards,

P.S: I have recently started a new treatment called Prolotherapy. I've read it is a helpful technique for chronic tendinopathy.

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Old 10-29-2015, 09:06 AM   #2
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Re: Gluteal Pain, Ischial Tuberosity Disorder

Because of the lumbar pain and heel findings, I would focus on the possible autoimmune disorders. Ankylosing spondylitis affects young men frequently, and there are some tests that can be done to help in diagnosis: an HLA B27 blood test and an MRI of the sacroiliac joints/lumbar spine. I would see a rheumatologist and ask for a thorough workup of the common autoimmune disorders. In the meantime, an antiinflammatory medication may give you some relief. Naproxen is OTC and works pretty well. It is available by Rx also at 500mg. twice a day dosage. OTC is 220mg twice daily. There are many other blood tests that a rheum might do to help sort this out. I wish you good luck in getting a diagnosis, and better health with treatment.

 
Old 10-29-2015, 10:10 AM   #3
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Re: Gluteal Pain, Ischial Tuberosity Disorder

Hi, thanks for the reply.

I have tested negative for the HLA B27 antigen and the MRI for the sacroiliac joints came out just fine. The rheumatologists said that it is highly unlikely I have ankylosing spondylitis.

Plus, I have already taken lots of antiinflammatory medication, none of which helped me. As I said, I've gone to several doctors so far, including 3 rheumatologists. I was put on sulfasalazine for 3 months, but it didn't help me either.

Regards,

 
Old 10-29-2015, 08:23 PM   #4
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Re: Gluteal Pain, Ischial Tuberosity Disorder

Sounds like an Ischial tuberosity pain syndrome, which does not involve the bursa. The appropriate treatment for this is prolotherapy or platelet rich plasma therapy. Hopefully the prolotherapy treatments will help.

 
Old 10-29-2015, 11:40 PM   #5
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Re: Gluteal Pain, Ischial Tuberosity Disorder

Hi there,

Thank you very much for your answer teteri66!

I've heard about that syndrome as well as Deep Gluteal Syndrome (DGS). But I haven't read any really good treatments for both. Do you know what are the exams/important clinical findings that can help the diagnose? I've done several MRIs of the pelvic region, sacroiliac joints, etc and nothing was found...

Furthermore, what do you know about prolotherapy and how do you know it will effectively help me? I'm kind of skeptic (and hopeless) about the treatment I'm doing I must say....

Maybe that's very ignorant of me to say cause this technique is still new in Brazil and we haven't heard much about it. Do you possibly know someone who had this ailment and got excellent results after prolotherapy?

Kind regards,

 
Old 10-30-2015, 09:55 AM   #6
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Re: Gluteal Pain, Ischial Tuberosity Disorder

The problem with this type of pain is that there are many possibilities for its origin. Since you have had various tests and an MRI many things can be ruled out. Often it is the ligaments, soft tissue and fascia that are no longer sufficiently supporting the core and back that become a pain generator.

I think something like ischial tuberosity pain syndrome is diagnosed through eliminating other possibilities! It occurs more frequently in runners and athletes. It can also occur in a fall or from sitting for long periods at a time.

Prolotherapy is not common in the U.S. either. It is considered experimental and as a result, not investigated or used by most medical doctors. It is a treatment that involves a series of injections over a period of days or weeks and is used to build up and strengthen weakened ligaments and to generate new tissue. Many time a dextrose solution is used, but recently people are having positive results using stem cells and platelet rich plasma in place of dextrose.l

I do not know if it will help you personally, but it is worth a try. It is harmless and will not hurt you like a steroid injection or pain medications could. You have nothing to lose by giving it a good try!

 
Old 10-31-2015, 10:03 AM   #7
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Re: Gluteal Pain, Ischial Tuberosity Disorder

I have already done 3 sessions of prolotherapy during the past 2 months and I haven't felt any significant improvement. Still have much pain on the pelvic region.

After how many sessions do ppl usually start feeling better?

Many thanks

 
Old 12-01-2015, 07:10 AM   #8
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Re: Gluteal Pain, Ischial Tuberosity Disorder

I have some updates regarding my case.

So, prolotherapy is not working. Besides that, I went to the rheumathologist last week and she said Ankylosing Spondilitis is still not out of the list of possible ailments I have, despite the fact I still do not have any exam pointing out to any real evidence for the disease. My MRIs are OK, blood exams, HLA-B27 is negative. The doctors are rather paying attention to my symptons and not to exams. I do have enthesitis on both foots (via MRI) , but nothing wrong with the ischial tuberosity nor something wrong with the sacroilic joints, where I have much pain on. I started psychotherapy & hypnotherapy to see if I can reduce pain and frustration levels and I also returned to acupuncture to see if it helps diminish stress and anxiety.

Anyway, just wanted to post some of the developments and check if other people out there are going through the same problem with no conclusive diagnose. I really hope someone with similar symptoms sees this thread and touch base with me so we can ultimately find out whats disturbing us (since doctors pretty much have no idea).

Regards,

Last edited by Mitt8; 12-01-2015 at 07:16 AM.

 
Old 12-01-2015, 08:29 AM   #9
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Re: Gluteal Pain, Ischial Tuberosity Disorder

Are they injecting at the SI joints in the prolotherapy?

Does your job require you to sit all day?

 
Old 12-02-2015, 04:49 PM   #10
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Re: Gluteal Pain, Ischial Tuberosity Disorder

The doctor injects glucose on every trigger point, including the sacroiliac joints, isquial tuberosities and heel bones.

I am currently not working due to pain. I can't sit at all and I'm starting to feel much pain when I stand for more than 5 minutes.

 
Old 12-02-2015, 09:43 PM   #11
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Re: Gluteal Pain, Ischial Tuberosity Disorder

Are your SI joints unstable? Have you had a diagnostic nerve block there?

 
Old 12-15-2015, 02:52 AM   #12
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Re: Gluteal Pain, Ischial Tuberosity Disorder

"Are your SI joints unstable? Have you had a diagnostic nerve block there?"

Not sure what you meant by 'SI joints' being 'unstable'.

I have received no diagnostics yet, although I am going to start taking Humira, which is an immunobiologic drug (https://www.humira.com/). The doctors are afraid I have some kind of inespecific spondilitis. Probably you have heard about the drug before.

Apparently I don't have any problems with nerve conductivity (the hypothesis has been ruled out by EMGs).

Cheers,

 
Old 12-15-2015, 12:03 PM   #13
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Re: Gluteal Pain, Ischial Tuberosity Disorder

The sacroiliac joints is what I meant. They can sometimes allow more movement than they should, which results in sacroiliac joint dysfunction. This causes inflammation and the person usually ends up with a sacroiliitis.

Humira is a very powerful drug. They must suspect you have a spondyloarthropathy of some sort.

I hope it works for you. Please let us know.

 
Old 12-15-2015, 07:38 PM   #14
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Re: Gluteal Pain, Ischial Tuberosity Disorder

Yes, I understood what you meant by the acronym 'SI', by not the part of them being unstable.

Well, but could an unstable SI joint cause inflammation also down on the ischial tuberosities, back of the thighs and heels? When you talk about a possible sacroiliitis you mean a local dysfunction, not a general problem on the pelvic region, right? Since my case is systemic (happening in distant parts of the body) the doctors suspect about an autoimmune disorder, although most of my exams seem normal.

I will start taking humira in a couple of weeks from now.

I will keep you and the guys posted about the evolution of my treatment.

Regards and thank you once again for your commentary.

 
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