SI Joint Pain

[bluejadedwho]

Does anyone else have or are suffering from SI joint pain? I’ve been in terrible pain for the last 10 months. The pain is prominent in a small area in the SI joint in my buttocks. When it’s really bad, it radiates down my leg and makes my leg numb. For 10 years, I was using a cane, and was walking very incorrectly. I believe it’s all the years of walking in such a way. I now use a walker and go to physiotherapy to try to walk as properly as possible. I tried Cortisone shots, and it did nothing. Also MRIs show there’s nothing wrong. I I know that in the long run, physiotherapy is going to help. I just would really love a quick fix for the pain so I can focus more on movement and exercise, which I find is the only thing that really helps.

[COwithAMN Administrator AMN EASIER Volunteer]

Hi

This pain sounds awful so I do sympathise. Given that many AMN people suffer from neuropathic pain, one must wonder whether SI and other degenerative pain-inducing problems are somehow experienced more severely for AMN folk. I have no idea if that is true.

For what it's worth, I have had back pain on and off for the last 30 or so years. It's not bad enough to warrant any major interventions. I have been to many physios and other therapists over the years who all claimed to be able to help. But I have come to the view that the best way to deal with this, for me, is my own daily stretching. And the best, the very best backstretch - which I do every morning in life - is something called the Sarah Key back stretch.

Here's a photocopy of an article I found back in 2006 in a U.K. magazine for healthcare professionals in primary care.

dropbox.com/s/z2ysi6huaypb5...

I have no idea if this will help you but it's free and may help. For me, it's very relaxing and really helps my lower back mobility.

I bought back blocks on Amazon from a yoga equipment supplier.

All the very best, Chris

[bluejadedwho in reply to COwithAMN]

Thank you for this.

I have one of those special pillows that one puts between their knees whilst sleeping.

I tried using this as a “back block” under my lumbar spine as shown in the photo. When it’s pushed down with pressure, it lifts about 3-4 inches off the ground.

Do you know if this will suffice, or is it necessary to have a hard wooden block?

[COwithAMN Administrator AMN EASIER Volunteer in reply to bluejadedwho]

I first tried it like you suggest with pillows but I found that it didn't give enough stretch. Then I "graduated" to hard-cover books - as many as required. These work well, but books are heavy to carry if you are travelling. About a year ago I found what is perfect - solid, firm yoga blocks, very light - in UK, a company called Yogamatters sells them. You can see them here at amazon.co.uk/Yogamatters-yo...

I am sure you can get same in Canada.

[bluejadedwho in reply to COwithAMN]

Would you say one hard cover book that’s about 2 inches thick? And does it matter the width of the book? Do you want it to fit in the small of your back? I did find with the pillow, it was a good stretch and my back cracked a bit. I also suffer from back and neck pain which I have for almost my whole life.

[COwithAMN Administrator AMN EASIER Volunteer in reply to bluejadedwho]

Start with one book - 2 ins thick is fine. See how it feels. It doesn't go under the small of your back. Your coccyx which is the bone at the base of your spine should be in the middle of the books. Your shoulders and heels should touch the floor. I do my stretch with more - about 5-6 ins but I am fairly tall. The longer you are, the thicker the pile of books you can manage.

[Cherie]

I also have a problem with the joint,and sitting can be especially painful. It was one of the first effects of AMN I had 20 years ago whilst doing my regular Pilates - well before I had any trouble with walking or knowing I had AMN. Although it is much worse now. I have also had MRI's that show nothing is wrong and injections that haven't worked. One specialist said radiofrequency nerve block could help, and another gave me Tramadol (which I won't take unless I am in crying in pain). My main specialist didn't think radiofrequency was a good idea, or the idea of taking Tramadol, but also can't find anything that does help.

I take Lyrica at night but not during the day as I don't like the side effects, and would probably have to take a fairly high dosage to see if it would be of any use. Occasionally TENS helps.

At the moment I use 2 sticks but am looking at getting a walker. I am going to an acupuncturist to see if he can help with this among the many other things! The local neuro nurse wants me to try hydrotherapy pool and to find a physio. She has also booked me in for various exercise sessions to try out as I find many make the pain worse. Aqua exercise helped a little but normal swimming pools are too cold for me.

I agree with you if only we could stop the pain it would help with exercising.

[bluejadedwho in reply to Cherie]

Isn’t it ridiculous how traditional things don’t work and how traditional diagnostic tools often don’t show anything?

It’s so very frustrating. I am so exhausted from pain. I will never go down the narcotics route again as it really it doesn’t really help that much. It just makes you so stoned that you don’t care about the pain. I do find Lyrica does help a bit and I take the majority of my dose at night.

[Cherie in reply to bluejadedwho]

I have been looking at trying CBD oil. When I asked one of the specialists he said I could always try it out to see if it works.

[bluejadedwho in reply to Cherie]

I found the CBD oil not to be of enough benefit to warrant the price. Unfortunately, at least in Canada, it’s not covered under any insurance at this time. Something that I’ve tried his kratom. I’m not sure if you’ve heard of it. It’s an herb from Indonesia. It acts on the opiate receptors but not in the same way as narcotics. It doesn’t make you feel dopey or stoned. Just be cautious and take it in cycles as it is mildly physically addictive. You have to order it online and it says not for human consumption on the package. Health Canada and the DEA in the states are trying to regulated it as it is lessening prescription sales.

[julie_]

This is very interesting as I have had lower back pain on my right side for some years now since being diagnosed. The pain was not severe enough until the last 2 years or so and I assumed it was sciatica. I began kickboxing (to return to it, a test for myself) and I went overboard and the muscles in my lower back on my right side inflamed so badly I wasn't able to place any weight on my heel when I took a step! I took a break for 10 days and the inflammation went away. I still have the pain in my lower back on the right side. Pain killers don't work but stretching and movement does. The pain increases when there is no movement. I don't know if there is a quick fix or a fix at all.

[tieaknot]

Hi! Yes, I have SI joint pain on both sides that flares up often. I used to have my kids stand on my low back or have my husband push and hold very hard on the spot which would give me some relief while there was firm pressure but it would return with a vengeance as soon as the pressure stops. I wonder if it is he chronic tightness and spasm of the para vertebral muscles and other muscles that causes the joint to “lock up” so to speak. There is supposed to be some mobility there and my lower back feels like it’s “stuck”. I invested in a good inversion table (where you hang at an angle or upside down) and it feels SOooooo good. It can last for a little while afterward too. I also found tramadol to be the only pain medicine that really helps me (it seems to work well for neuropathic pain as it works differently than other pain meds) but unfortunately the side effects were too much for me (I am ultra sensitive to meds). Regular Extensive stretchinf and certain exercise and rest seem to be my best suggestions. Hang in there!

[Abdallahomari79]

Have you taken oral Baclofen before, because I felt the deterioration in joint pain after starting Baclofen and raising the dosage and I tapered of it slowly and still suffer from the same symptoms which didn‘t exist before starting oral Baclofen

[bluejadedwho in reply to Abdallahomari79]

I have just now started oral baclofen, so there’s definitely no correlation between that and the SI joint pain. Thank you for your suggestion though.