Hi Dona,

I have been fighting that nauseating sacroiliac pain for years...close to 10-12 yrs...I have never found a cure. I have been followed by chiropractors, physiotherapists, a rhumatologist and goodness knows what else but there is no 1 fix-it-all.

In the end I have come to understand that the best medicine is physical activity and my enemy is sedintarism...if I sit or lay down for a long while I cannot get up. So I keep moving most of the time. Walking, climbing stairs or hills help (I do a lot of climbing due to the geography of where I live) so when I am ok I walk & or climb at least 1/2hr a day or more (I like to push past 1hr because then I feel 'light' and painless for hours)...that is the 1st sign of inflamation...you feel less pain the move you do.

Ice is my next favorite thing. I never realised how much it helps until I wrecked my knee a couple of months ago...all the creams, treatments and lotions did nothing but an icepack 2-3xs/day worked miracles.  I started using it on the sacroiliac joint and on the sciatic and for at least a couple of hours afterwards I feel no pain.

I take NSAIDs daily (right now I am coming off of a long and painful flare so I have been taking napoxine for the last 5 months 220mg 2xs/day...could probably use more but I don't want to push it.)

When I am around a pool I prefer aqua-gym (my own homemade variety). I use ballet & yoga exercises that I learn from a book and do them in the water. They help a lot. Add a 'noodle' or other floaty devise and just 'play', float, jump, swim...

I am no olympic swimmer but with a noodle wraped around my chest or behind my back I can do laps for hours with little or no effort. Just don't over do it in the begining...Work your way up from 15mins. Don't neglect your abs that hold the rest of you up.

I have found that if you look around you sport is everywhere and you can add a lap to the grocery store aile or park at the other side or the garage...any and all exercise helps.

If you sleep on your side put a body pillow along side you and throw 1 leg over it, it eases the pressure on the lower back. If you sleep on your back put it under your knees and feet.

There are tons of tricks...try them all and then keep the ones that work for you.

Hope that this helps

Sharon

ps? Have you checked your Vit D levels? Apparently that influences the pain level too.

 

 

Exercise is great for keeping the joints mobile for maintenance, but will not treat an acute flare. When you are in an acute flare, it can just make things worse. It is like tightrope walking, and there is that fine line of balance or falling into the abyss! I have been dealing with enteropathic arthritis (a form of spondylitis) for over a decade, and probably another 10-20 years before I was diagnosed. I did great with NSAIDs until side effects prevented me from taking them anymore, except for very short courses. NSAIDs are the mainstay.

 

When I am in a terrible flare, I just have to have prednisone. Just a short course with a fast taper (like two weeks total). I have not been on methotrexate (yet), but have been on one biologic or another since diagnosis. Currently I am on Cimzia. These meds have kept my cuffitis and pouchitis in check for the most part (with the occasional flare). Plus, that searing pain in the SI joints that prevent you from rolling over in bed at night, has been lifted. I also take a muscle relaxer at night, and Norco and extra Tylenol during the day.

 

You need to have your GI and rheumatologist work together. If you have not been referred to a rheumatologist yet, time to get a referral!

 

Have you checked out this site? They have the most up to date information:

http://www.spondylitis.org/about/medications.aspx

 

Jan

Thanks for the reply!

I do gave a Rheumatologist. She is the one who put me on Sulfasalazine.my script ran our so I had to have blood work done before they would refill. I had the blood work done yesterday so I should hear from somebody soon. Last time my D was extremely low.

Today my back is feeling a bit better, last night it was horrible! But I woke at 12:30 needing to use the bathroom and I was pleasantly surprised that my SI joint was not too bad!

I am still struggling to get this UC flare up calmed down. I am feeling like I am headed towards a bout of dehydration. Hopefully I can push my way through, I have no time for a hospital visit!

Thanks, again. I will keep you posted.

If you really think it could be Ankylosing spondylitis, you could ask to be tested for the genetic marker of it, I think I read somewhere that something like 95% of people diagnosed have this gene. I too have a lot of SI pain, I wish you luck!

Yes, that is the HLA b27 gene. However, it is less closely associated with IBD related spondylitis. I am HLA b27 negative, but was diagosed with enteropathic arthritis with spondylitis. I think my rheumy said about 30% are negative.

 

Jan

Here is the article I am referring to in which the dr says 95%, although he does say 95% of Caucasians and that you can have AS without the marker.http://www.spondylitis.org/about/as.aspx

Genetic markers are beside the point, though, was only trying to give some added info.i just hope you get some relief, Dona!

I see my rhumy tomorrow after waiting over 7 months for an appt...I am going to beg him on my hands and knees (may never be able to get up again afterwards) for something for this pain!!!!!

I can not turn over, move sideways, straighten out in the morning, squat down ;(, dance or have any fun with hubby lately...Nights only work if I pass out from exhaustion. And my last flare is 'under control' as compared to last month!

What can I ask for? I am already on OTC naprosyne plus advil when it calms a bit but nights are horrible. I am icing like crazy but it just isn't enough.

No time for PT lately. I barely make it home before 10pm. Someone please give me a suggestion of what I can ask him for?

Sharon

ps. I don't do well with narcotics

Have you every tied meloxicam (my spelling may be wrong), I don't have RA (that I know of) but do have "regular" arthritis" and it helped me a lot.

Oh, and I almost forgot- good luck, Sharon!

I am feeling much better. Thank you all! Although my blood work shows high sugar. I am officially on a low crab diet with a retest in about a month. Wish me luck on that.

I still do not feel right. My UC flare is lasting longer than usual. I hope the light headed feeling I have been having is from the high sugar levels and not dehydration. I guess if I feel this way for a couple more days it will be time to call my GI.

Sharon, good luck at the dr's! I hope you find relief.

 

Thanks again,

Dona

 

High blood sugar should not make you lightheaded. It is low blood sugar that can make you lightheaded and shakey. Both my husband and I ha e type 2diabetes.

 

More likely dehydration. I have been able to keep my blood sugars and HbA1c within normal range with just diet control. My husband has not been so lucky. A big reduction in your carb intake should make a big difference. Good luck!

 

Jan

 

 

Thanks Megan,

Saw the Rhumy tonight,

He took x-rays and confirmed the massive degeneration of discs in the  lower lombard region, twisting of the sacroiliac and a tilted, rotated pelvis (not surprised, I have rather severe scoliosis)...

For now he is fighting it with 1000mg naproxin s 2xs/day (horse dose), tramadol for the pain, ice, PT and he has suggested that I do a 'thermal treatment'...3 weeks in a sort of thallaso therapy center where they treat me with hot see water and massage.

Not sure if I have the time right now but boy would I love to do it...anything to get rid of this pain.

He wants me to have a scan done just to verify how deep/bad it is.

Started the meds tonight. Let's see how I sleep.

Sharon

Dona, I feel like I have a lot of sugar swings too, maybe I should bring it up next time. Good luck with the diet, hopefully that and hydration will make you feel better.

Sharon,
You got a lot of news today!!! Sounds like a very aggressive regiment! I hope what you're able to do give you relief!