Infectious Sacroilitis

[virginiaclaire]

14 months ago I had a severe kidney infection which took 4 courses of oral antibiotics and 1 course of IV antibiotics to clear.  However, despite this clearing up in hospital, I was left in the most unbelievable pain imaginable. After several tests and examinations I was told I had infectious sacroilitis.  The condition at that point was so acute that I physically vomitted anytime anybody touched my lower back.  I was prescribed anti-inflammatories, very strong painkillers and a low doze of amytripline (to try and trick the nerve ending messages to the brain).  After 3 months of constant agony I visitited a chinese doctor and began accupuncture and chinese medicine.  Physiotherapy was pointless as they could do nothing to help me and dismissed me from their care within 2 sessions.  I went through months of chronic pain that was relentless 24 hours a day.  Around Christmas time I began to see a noticiable difference in my tolerance of pain and since then I have managed to wean myself off all prescribed drugs.  I continue with my accupuncture - which is now 6 weekly and take my herbs daily.  I am able to get through the day easier although the pain is constantly there, just not to the same degree.  I am also using herbal salts to relax the muscles and different rubs to do the same - these do offer some relief.  Heat packs also offer short term relief.  I take paracetomol if the pain becomes too bad but this is usually only just before my period.  My questions are  'How can i help myself recover from this illness' 'How does this condition occur'? and 'Is this condition chronic - how long will it last?'  I am 36 years old and have 3 very young children.  All my labours were spine on spine so consequently took over 24 hours each time.  The pain I am in every day is comparable to 'backache' labour pains - the most horrific pain I have ever experienced.  Please help!! I am a positive person but some days this condition gets me so down - I just feel like I am going nowhere.

[Mariaseastar]

Does this condition ever go away? Mine is from a fall but it's been months now... 9 months... I get night sweats, fevers with tremors, headaches and always the horrible pain. The guided cortisone only made it worse for weeks and did not help. The MRI is normal showing only slight inflammation of the joint. Could there be an infection that has developed since the last MRI 7 months ago? Will a pelvic MRI reveal more than the lumbar one perhaps? Will antibiotics make it go away if it's a one time infection not related to an arthritic condition? And if it is due to arthritic condition does it go on forever? I am so sorry to be so annoying... I can't take it anymore... my quality of life is awful. Thanks kindly for replies.

[sara896]

I was really amazed by your post and I believe I have this condition. I was hospitilized 10 times in a year for UTI 's and chronic stones I have had two surgeries, since my last surgery I have had this unrelenting pain in my SI joint. I had a mri. which showed stenosis in low back nothing else. I am convinced this is my problem and I am interested in what diagnostic tests where taken or what bloodwork determinned this condition. Thank you so much for this post I would have never put the two togeather, it makes sense now.

Sincerely, Sara

[Tuckamore]

Hi Virginiaclaire,

I have SI Joint Disease/Dysfunction/Syndrome. I used the three terms because they are often used interchangeably. With my condition comes some Sacroiliitis. Sacroiliitis is an inflammation of the sacroiliac joint and the surrounding ligaments and tissues. It is treated differently. Infectious Sacroiliitis can be brought on by several things, one of them being a severe UTI. I am assuming that the infection has cleared and you are left with an inflammation of the sacroiliac joint. If not you should continue the treatment to clear the infection through your PCP as it can become septic and this can be life threatening. It can also lead to additional complications such as osteomyelitis.
  
Sacroiliitis is treated with disease-modifying antirheumatic drugs (DMARDs). These medications include sulfasalazine (Azulfidine) and methotrexate (Rheumatrex). Doctors prescribe DMARDs to limit joint damage. Taking these drugs at early stages in the development of a joint condition is especially important to slow the disease and save the joints and other tissues from permanent damage.

Because many of these drugs act slowly, DMARDs typically are used with an NSAID or a corticosteroid. While the NSAID or corticosteroid handles your immediate symptoms and limits inflammation, the DMARD modifies the disease itself. So please continue to follow-up with a medical physician.

My SIJ Dysfunction will last as long as I do. It was undiagnosed for years and therefore untreated. I have severe buttock, hip, lower back, pelvic and sciatic pain, all directly related to my SIJ Dysfunction and Sacroiliitis. I have tried acupuncture, herbs, rubs, massage, PT, steroid injections, and anything else offered through medical science. I am sorry to report that everything I have tried either didn't work or it worked to a small degree for a short period of time. I have had to resort to opiates. Nothing else is successful in controlling my pain. Currently I see a wonderful DO, almost weekly for manipulations and pain medications. Each year my ability to stand, walk or sit reduces.

I wish I had a better response to how long this will last for you or what you may do to return to your former level of functioning. My life is forever changed due to this condition. However I do not feel sorry for myself. I stay positive and do the things I can, when I can. I am grateful that I have a diagnosis and a great physician that understands it and treats me. I take one day at a time. I have hope that some day the medical community will come up with a successful treatment for this condition. Until than I hang in there and wait. Our condition is rare.  

I would be happy to share or swap suggestions. You may PM me. Please keep in touch and let us know how you are doing. I will look forward to your next updater. Best of luck and please take care, Tuck

[darnback]

I have found that exercise helps immensely, especially walking uphill---uphill!  If you have hills around you, walk them.  If not, set a treadmill to uphill settings and get on it everyday.  Also, an eliptical exercise machine set to high resistances will accomplish the same.  The less I exercise, the worse the pain.  When I force myself to exercise, even with pain, the better I do, the less the pain becomes.  Try this...

[kellySI]

Hi My name is Kelly (38yrs. old) and I too have infectious sacroilitis.I also have three young children and I understand the pain you are in and how difficult it is to care for yourself and your family. I hope maybe we can support each other and share medical advice.