Anyone have horrible SI joint Dysfunction pain?

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pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 6/22/2010 6:17 PM (GMT -7)   
I'm going through what they consider the "end of the line" chronic pain program now (and yea...I'm 26).  But it's been a great experience and I've learned a ton.  One thing I learned is my SI joing is completely out of wack and getting it back in has been the most painful experience.  I'm sooo used to chronic pain don't get me wrong - but feeling like I'm being stabbed 24 hours a day I'm not as used too.  It makes my glute and pevlic muscles spasm and now it's so swollen and irritated it's pinching nerves and sending shooting pain to some not so nice places.
 
I'm scheduled to have a nerve epidural to see if I can qualify for some nerve blocks but I'm just wondering if anyone else has had this pain?  Because I've lived like this for so long they said it can take 5-6 months of working hard to get it back into the right spot and my body used to be in a "normal" position - although I'll be going back to work and sitting for 8-9 hours a day hunched over a computer again.  I can get up and walk around of course, but at the end of the day...its still not great.
 
I'm just wondering if anyone's gone through this and what they've done?  Currently I'm doing some stretching, trigger point therapy, trigger point injections, mobilizations and all that good stuff.  I appreciate any responses in advance.

MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 6/22/2010 8:41 PM (GMT -7)   
Hi PennState...yes, I have the same problem as you are describing. My doctors think it's why I have so many trigger points - I have knots of pain in the pelvic area, on the abdominal wall, and down into the hip (I also have FAI, both types, where the femur doesn't fit into the socket properly).

My treatment has basically been what you've described...stretching, trigger point injections, etc. I think in my case, there's been less attention paid to this problem, due to the hip issue and all the other pain issues I experience.

I hope the nerve blocks make a world of difference for you. I am having a hip injection done at some point in the near future, in the hopes it will offer some relief, but time will tell.

Regarding your work environment - can your company provide you with an ergonomic assessment of your desk and computer, so it can be adjusted to allow you to work in an optimal position? There are a lot of things that can be done that will ensure you're suffering as little as possible while you work. I would suggest you contact your HR department to see if that's a possibility.

Good luck to you....

Pam
Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoroacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily


pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 6/24/2010 8:21 PM (GMT -7)   
Thanks for your reply Pam - Its hard to deal with problems like this where you have to retrain your body and theres nothing easy to do about it.  I just got another muscular injection for the SI today so I'm hoping that it helps a little althought I also had a OMT today so I'm crazy sore.  It's enough to deal with all of the chronic pain problems (IC, IBS, Fibro, CFIDS, Vulvodynia, Vulvar Vestibultitis, SI Dysfunction, Myofacial pain syndrome, etc.) but when this pain is this sharp and causing such bad nerve pain - some days I feel helpless.  If I can't can't get the joint back in I usually try to hard and then it spasms and swells.
 
Sorry you have had the hip problems as well - I have bursitis but amongst other things they dont really know whats wrong aside from thinking its entraping the pudendal nerve.  Kinda hoping its not that but I guess the epidural will show.  We'll see.
 
Again I really appreciate your response and it's sooo nice to hear from someone that has this problem....it's so painful and getting your body to completely change how its worked forever....is not easy and does not feel good :) Hope you start to feel better and find some luck!

MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 6/24/2010 10:43 PM (GMT -7)   
I totally agree! It's so hard when your body has worked well for you for a long period of time and then suddenly stops. I've had Fibro since my late teens (I'm 48 now) so I really can't remember a time of not being in pain. For many years though, I was able to put it in the back of my mind - I would drug myself up with 6 extra strength Tylenol at a time to dull the pain and then go be Mommy or Secretary or the kids Social Coordinator...you know..."normal".

I have often had that "helpless" feeling, especially before I started as a patient at the Chronic Pain Centre in Calgary. I rarely mentioned being in pain to anyone (except my poor hubby, who bore the brunt of my emotions for years with patience and grace), and for many years, none of my friends or co-workers knew I suffered. It wasn't until the pain became a constant, never changing throb that I was able to be honest with others about it, because I couldn't hide being in pain any longer. I was constantly turning down invitations for things and my friends all started to question me about what was happening.

I was able to be honest with my friends, despite my fear of being treated differently - you know, like I was fragile and would break any second. I just want to be treated like anyone else...no extra concessions made for me, etc. Of course, that doesn't happen...there are concessions that need to be made sometimes, but now, I don't worry about it. I'm just honest and up front about what I need, and voila...it's done.

I'm sorry the pain you feel is so constant and unrelenting. I hope you are able to work with your physio to get maximum benefit and major pain relief. I recently started AquaFit and I love it! Easy on the joints and the water feels great! It might be something you want to look into.

Hang in there, know that I am cheering you on from afar....take care of yourself!

hugs,
Pam
Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoroacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily


bettyjane80
New Member


Date Joined Jun 2010
Total Posts : 1
   Posted 6/25/2010 11:30 AM (GMT -7)   
Hello
 
I am new here and was reading your post and just wanted to make a suggestion.  I suffer from Fibrous dysplasia in my left hip and SI joint and lower back arthritis and have bursitis in my right hip.  I know it is not the same as you but I have found some pain relief in taking vitamin C.  I take about 3000-5000 ml grams a day.  I found this remedy in a old home remedy book I found.  I talked to my doctor and she said the she knows cancer patients use vitamin C for pain.  So, I tried it about six/seven months ago and now only take about half of my usual pain meds.  It doesn't take care of all the pain, but it helps me.  As with you, I am going to be getting an injection for pain.  I may also have to have hip replacement in the near future. (I am only 30 years old.)
 
Hope this is helpful.
 
Bettyjane80

pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 6/26/2010 5:40 PM (GMT -7)   
Thanks Betty Jane - I also have severe bursitis in my right and left hips so thats a great suggestion.  I'll have to go over the dosage with my uro, as I have IC Vitamin C (even tablets) aggrevate my bladder.  But I would love to cut my pain meds down so it just may be worth it!
 
Pam - I am in total agreement with you about the "pity party" I get freaked out about.  I just don't like anyone to know until you realize you have to tell people. My company is so small that when I had to take medical leave folks had to find out I was going to a chronic pain clinic.  I felt sooo horrifide because I don't want people to think I'm helpless - but yet there are days that I sort of am...so it feels like a lose lose sometimes.  One thing that the chronic pain program has helped me with is the understanding that there are things I can do to help myself like relaxation, stretching, gentle excercise, etc.  But I need to be careful about not pushing it - but at the same time I've finally accepted that this is my life, so now I move on.  If there is some magic pill or injection that totally gets rid of the 15 things that are wrong one day - that's amazing and I pray for it...but if not, this is me and I have to just move on and accept it.  That's probably one of the hardest things to do and I am proud of myself for that.  Having said that - doesn't mean I can't have days where I feel like crap and pity myself, lol.  Thanks for the understanding and suggestions you all!

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/26/2010 7:50 PM (GMT -7)   
My heart goes out to all of you suffering so much pain in your bodies.
Pennstate, you are a very courageous person, my gosh you have so many illnesses on your plate!!!!
Why so much for you??? I will pray for you and everyone here, including myself, for strength to get thru each day.
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since 2000.
 
           


pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 6/27/2010 8:18 AM (GMT -7)   
Suzanne - thanks so much for your encouragement. I have to admit - one of the hardest things for me to deal with sometimes is the headaches that come with either the stiffness from Fibro, the flu-like ones from the CFIDS or periodic migraines - you can't throw icr or heat on that to really get any relief so I feel so much for you. - I couldn't imagine it just not going away and getting a few days relief so bless you!
 
Also, I was really exhausted early last night so I went back through and was reading some again - and Betty Jane - at 30 I really pray you dont have to have surgery.  I really hope you can reach out and find any help you can before it takes you that far.  I have to say I'm always one for a quick fix and I think most of us in Chronic Pain are for it to just freaking go away (excuse my french :) ) but you are so young to have to go through all that.  If you do, I really do pray for you that it goes really smoothly because its such a big procedure.
 
I do try a lot of different things and Ice seems to help my bursitis and SI.  I'm sure you've tried a lot of these things too, like Lidoderm patches and lidocaine ointment right on the hip.  I've even made my own essential oil mix (I also have some bursitis in my knees and near my elbows) and it really does seem to help calm things down (even if its wishful thinking).  I have just used 2 tblspns of Jojoba oil (but can be any carrier oil like olive, or almond, etc.) and added 5 drops of Juniper, 10 drops of Roman chamomile and 15 drops of cypress.  I put it in a little bottle that has a rolly ball on top so I can roll it all around my hip and massage it in.  May work or not but hey, may be worth a try :)
 
I really am thinking about you and all that pain for someone so young - I just really hope you find some relief!  And I am DEFINITLY looking into that Calcium treatment - I always feel the more natural the better because I hate being on all these pills!

Post Edited (pennstate71) : 6/27/2010 9:34:10 AM (GMT-6)


solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 6/27/2010 3:00 PM (GMT -7)   
Hi Pennstate. I really hesitate to bring this up this because so many people here dislike them for various reasons but here goes anyway. Have you seen a chiropractor for your SI joint? That type of problem is right up the alley of their expertise. I have SI joint problems also but not to the extent that you experience. My chiro works on it for me with good results and it doesn't hurt at all. I understand that there are several techniques that they can use for this issue. Mine uses a drop table and flexion distraction plus interferential and cold laser. Your problem may have progressed to the point that chiropractic care may not help but I just hate to hear of all the painful things you have been doing in an attempt to feel better.

I wish you the best of luck in your search for pain relief. Lisa
If I can laugh at it, I can live with it.


Celiac Gal
New Member


Date Joined Jan 2012
Total Posts : 3
   Posted 1/1/2012 7:22 PM (GMT -7)   
I was taken by ambulance and hospitalized for 3 days with a severely sprained SI joint (right side) 4 months ago. Since then I have been going for physical therapy 2x per week. I am very fortunate to have a therapist who is very knowledgeable about SI joint problems. It is my understanding that many PT's are not familiar with how to treat SI joint problems. Female PT's may not have the strength in their fingers to provide the treatment needed to get the joint back in place. In the beginning, each session was spent just trying to get the joint back in place. I was advised to wear an SI belt and a special corset provided by my PT. The joint went out numerous times each day/night. Very painful! When it became apparent that I was not healing, my PT gave me a body brace that holds my pelvis together. Since then, my SI joint has not gone out. Because I had celiac disease for many years before being diagnosed, my therapist thought that perhaps I was lacking some vitamins necessary to build collagen which helps to hold joints in place. I had my vitamin D level checked and sure enough, it was quite low. After taking 50,000 IU of D3 for a couple of months, I got retested and my D level jumped 27 points! I am also taking extra Vitamin C to help build collagen. I am getting stronger day by day and have graduated from a walker to a cane. I am finally strong enough to start exercises to build up the strength in my right side, which is still somewhat weak. My PT said it is critical for those with SI problems to get help early on and not to do exercises until there is significant healing. I have found the only way I can sleep is on the couch with pillows behind my back and one between my legs. Other recommendations from my PT are: Protect yourself before moving, which means: 1) arch your back; 2) suck in your tummy; 3) make sure your shoulders and hips are aligned. All of these things must be done EVERY time before getting up from a lying down position. Do not sit or stand for longer than about 20-30 minutes at a time. When you tire, lay down (carefully)! Car rides should be no longer than 1/2-1 hour. When getting in the car, sit sideways on the seat with your knees together. Visualize a piece of velcro between your knees and keep both knees together and carefully turn onto the car seat making sure that both legs stay together as you lift your legs into the car. Posture is extremely important. Be sure to sit up very straight..no slouching! My activities were severely limited for 3 months. I was not able to bend to pick anything up or to dress myself. Fortunately, I have a gem of a husband who took over all of these responsibilities, including cooking, washing, etc. If I had not made the progress I have, my PT would have recommended going to Chicago for prolotherapy. If that didn't work, the last resort is surgery in Atlanta. To learn more, go to sidysfunction.com, a very interesting website. It is critical that the SI joint is put black in place properly BEFORE the surgery is done or you will have even more problems! Another thing you might try to provide some relief from the pain is find a good neuro-muscular massage therapist. I was living on pain meds for a bulging disc and pinched nerve, for which PT was not effective. I went for ONE NMT session and my arm came alive and I was off all pain meds. For those of you who have listed all of the autoimmune diseases that you are suffering from: Are you aware that many of them (rheumatoid arthritis, Sjogren's Syndrome, Fibromyalgia, Lupus, Raynaud's Syndrome, Diabetes, Thyroid Disease) are associated with celiac disease? If you have never been tested for CD, you should. Do NOT begin eating gluten-free until AFTER testing is completed or it will affect the results. Those with CD who strictly adhere to a gluten-free diet frequently experience relief from many of their associated health problems. One last thing...my PT says that SI joint problems can be caused by a tailbone injury, giving birth to large babies, and from weakness caused by autoimmune disease. Chronic Fatigue Syndrome can result in those who suffer with SI joint problems. We have to work so hard to hold our pelvis together, that we are easily exhausted. Last, but not least, attitude is very important. You must be faithful in following the suggestions to protect yourself, even after you heal, because the weakness in the SI joint means you could injure yourself again. Keep smiling and try to be positive. Blessings to all.

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 1/2/2012 6:58 AM (GMT -7)   
Good Morning Celiac Gal!

I see you are a new member, and it looks like you have come in through the back door of sorts to our forum! If you will look at the date of these post,…this thread is about 18mo old, and many of the members do not participate with us anymore.

I think your information is very useful, and I think it would be best if you started a new thread…introduce yourself there, and repost this information for the current members to read. I will lock this old thread,…it will allow visitors and members to read it….but they will not be able to comment on this very outdated thread anymore.

We hope to see you soon!

SE wink

If you are a member or a visitor, please click on this link to our home page, and start a new post on this topic, as this one is now outdated.

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Post Edited (Screaming Eagle) : 1/2/2012 7:03:51 AM (GMT-7)

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