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Lu2011
Regular Member


Date Joined Apr 2011
Total Posts : 291
   Posted 4/14/2011 6:50 AM (GMT -6)   
I have been diagnosed with sacroiliitis.  I posted here as it's similar to rheumatoid arthritis as it's inflammation of a joint.  My pain is different depending on the state.  Sometimes my back just aches, sometimes my actual joint hurts and in a flare up, it's shooting pain from my bottom down my leg. 
 
Does anyone know what is actually happening when it's shooting pain?  And what's the best way to deal with it?  When it's this kind of pain, i can't even put weight on my leg and the pain is so sudden and strong.

WantRelief
Regular Member


Date Joined Feb 2006
Total Posts : 261
   Posted 4/14/2011 7:43 AM (GMT -6)   
Lu: just wondering if you have any other autoimmune diseases? What treatment are you doing for the sacroiliitis? Pain management? I have this too, was told it goes along with the crohn's disease. 

Lu2011
Regular Member


Date Joined Apr 2011
Total Posts : 291
   Posted 4/14/2011 11:19 AM (GMT -6)   
Hi WantRelief.   I infact do/did have ulcerative colitis (had my colon removed years ago)...which is also auto-immune and related.  I'm sorry you suffer from crohns.  I currently take celebrex when needed (at most one a day as per my stomach).  was told to try physio but have yet to do so (hard to find available time for appointments with 2 kids).  How about you?  Do you get the shooting pain often?  And just general joint pain?

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 6888
   Posted 4/14/2011 11:41 AM (GMT -6)   
Lu, I posted to you on the UC board. Shooting pains down your leg are probably an irritation of the sciatic nerve, which can be caused by a muscle spasm in the piriformis, a small pear shaped muscle in the glutes. Stretching and muscle relaxants or NSAIDs can help with this (but NSAIDs are bad for folks with IBD).
*******************
48 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed.

WantRelief
Regular Member


Date Joined Feb 2006
Total Posts : 261
   Posted 4/14/2011 5:06 PM (GMT -6)   
Lu: my pain is pretty much only at night when laying down. After about 3hrs in bed, I am in excrutiating pain that wraps all the way around my pelvis. The only relief comes when I get up out of bed and start moving around, ususally after an hour the pain dissipates. I'm good during the day, only mild soreness.
34 year old female
CD of Terminal Illeum and Rectum Diagnosed 12/04
Malignant Melanoma in 2000.
Illeocolonic Resection 1/08 (18 inches of terminal illeum, illeocecal valve, right colon and appendix)
Current Meds: Pentasa, Vitamin b12 injections, Vicodin as needed.
November'09 colonoscopy shows reoccurance at anastamosis and active disease in sigmoid and rectum

Lu2011
Regular Member


Date Joined Apr 2011
Total Posts : 291
   Posted 4/15/2011 6:41 AM (GMT -6)   
WantRelief, interesting that your pain is only when lying down.  Must be because things tighten up.  Nights must be really awful for you during a flare up.

too young..too old
Regular Member


Date Joined Apr 2011
Total Posts : 56
   Posted 4/15/2011 10:07 AM (GMT -6)   
Want Relief,

The way you are describing the pain as worse upon rest and better with movement (even though too much movement can irritate) it sounds like a form of arthritis. I have Ankylosing Spondylitis which has hallmark symptoms of beginning in the lower back and morning stiffness and pain with rest. As I begin my day, I feel my worst. After a few hours, the stiffness and pain lessen. At rest (sleeping or watching a movie) the pain and stiffness come back.

If it were a muscle issue, like a spasm or pulled muscle, it would feel better with rest, not get worse.

I would talk to your doctor about all of this.

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 658
   Posted 4/15/2011 12:48 PM (GMT -6)   
I have a couple questions this post brings up. One, is how were you diagnosed with ankylosing spondylitis? My neuromuscular massage therapist advised me to have my rheumy check for that, after working with me for 6 mos. and noting problems and changes. Rheumy sent me for XRs of SI joints - which showed "degenerative changes more suggestive of osteo than sacroiliitis". But I also read on the AS Foundation site that XRs are not all that definitive, as it can take 7-10 yrs for the inflammation to register on an XR.
Second question - I need to sit sometimes to relieve pain that has built up from activity. But then after awhile it's the movement while getting up and taking those first few steps after sitting that creates big time pain. On the other hand, if I sit too long, I feel the stiffness & pain building and have to get up and move. So - I'm just trying to clarify the "better with rest, worse with movement" description. Seems to me both muscles and joints are involved - and it isn't one or the other. Sorry for ramble....question is, do you mean being at rest/sitting makes pain come back before you move - or, after resting or sitting the pain comes back when you move/get up?

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 6888
   Posted 4/15/2011 1:22 PM (GMT -6)   
My rheumy did a genetic screen for the AS linked gene. I don't have it, which doesn't completely eliminate the possibility of AS for me, but does make it much less likely. I have IBD, and the two are often linked, even without the genetic component. The rheumy then sent me for an MRI with contrast to see if there was active inflammation in my SI. There was not. His conclusion was that my joint issues are "enteritis arthritis," not AS. I think in the end it was a subjective decision, but there are criteria for your rheumy to use in evaluating you.
*******************
48 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed.

too young..too old
Regular Member


Date Joined Apr 2011
Total Posts : 56
   Posted 4/15/2011 5:53 PM (GMT -6)   
For me, a very large number of test added up to the diagnosis. There is no difinitive diagnosis for AS. It started with lower back pain about ten years ago along with a few other odd symptoms. My mother has fibro and deg. disk disease. After growing up with that being part of daily life, I learned quickly that some pains are not normal and should not be ignored. When my back pain started, I saw a few doctors from chiropractors to massage therapist to accupuncturist. It was my neurologist (for migraines) that ordered an MRI due to a few strong medications not helping. The MRI showed arthritis and a bone spur. He referred me to a specialist who went through a year of attempts from cortisone injections into the muscles to facet joint injections. Most of this helped, but apparently it was supposed to be a bit more...permanent than it was for me. Each lasted me a couple of weeks. He referred me to a Rhuematologist who, by then, had all of my medical records, including numerous labs that were ordered for obgyn issues and lymph node problems. She ordered baseline blood work and xrays. Her findings of my history, xrays and blood work concluded AS. My xrays showed degeneration and some mild fusion, arthritis throughout my entire spine, less arthritis in my extremeties (hands and knees). Bloodwork showed positive RA factor, elevated sed rate and such. Family history of Lupus, Psoriosis, DDD, Fibromyalgia and so on. Basically the concensus was that there is no definative diagnosis for AS, but there also seemed to be not one clinical symptom that I didnt have.

What I mean by rest/movement effects is: If I stay still for too long, like when I am sleeping or even sitting for a while, my joints stiffen up. It will hurt to get up from bed or stand from sitting, but it is necessary in order to begin moving again. After a walk around the yard or house (or the block if I am feeling bold) my joints tend to loosen up a little. Now if I try to go for a jog or walk uphill or move "too much" it will get worse. Everyone is different. For me, too much rest makes me stiffer. Moving loosens me up. Too much moving or doing what healthy people consider a normal daily routine, and I have overdone it. Overdoing it makes me need to rest a bit. It is fine line. I have been dealing with this for years and I still dont always know where that line is and when to not cross it. Moderation is key. Too little movement and I hurt. Too much and I hurt. It is somewhere in between that works for me. Muscle problems are connected to AS as well. Treatment for a pulled muscle (had one in my back recently) is resting and not activating the muscle. After the muscle healed enough to get back to my life a bit, my joints felt like one fused bone due to lack of movement in order for the muscle to heal.

and....after reading this prior to posting....I sound messed up! lol
I hope this makes sense and doesnt confuse you more. Picture it this way (overexaggerating for effect here), if you have AS, which is an auto immune disease that can lead to fusion..usually spinal, aka bamboo spine, not moving at all or sleeping through the night will make you feel like your spine is fully fused. It needs to move to stay...unstuck. Once again that is a little over the top, but it is how I understood it in the beginning of my illness.

Lu2011
Regular Member


Date Joined Apr 2011
Total Posts : 291
   Posted 4/15/2011 7:12 PM (GMT -6)   
I second lucysgd and JFG.   If I sit too long or lie down too long, then I guess things tighten and am in pain.  In fact, sitting too long and lying on my back can cause a flare up.  On the contrast, if I walk too long without taking sitting breaks or do exercise (bike, eliptical)...thigns that are supposed to be good for people with arthritis, it causes a flare up.  It's like we just can't win.

lucysgd
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Date Joined Jun 2008
Total Posts : 658
   Posted 4/15/2011 8:46 PM (GMT -6)   
Thanks JFG and LU and all.....  It would seem we're all on the same page.  It is indeed a fine line to walk, between enough movement and too much - and enough rest and too much.   Fatigue adds another dimension.  Sometimes that "line" has more to do with crashing into fatigue and weakness, than pain.  But I have fibromyalgia also.   I do get frustrated with the difficulty in nailing down these autoimmune problems.
 
After the fibromyalgia dx, I herniated a lumbar disc, and my back has never really recovered.  A couple years after that the connective tissue disease problems started and after 2 plus years on Plaquenil things are better, but not great.  I also have Celiac disease and have been gluten free for 18 months - which seems to have helped reduce my inflammation (at least in terms of the CRP/ sed rate ( or perhaps that's due to the plaquenil).   
 
I'd like to find a good physical therapist who is familiar with this balancing act and be shown how to do some specific strengthening exercises, tailored to my problems.  Another needle in a haystack search, I'm afraid.  Before all these problems began to add up, I was able exercise and work and garden and travel without difficulty.  I miss those days.
 
For now, my official diagnosis remains UCTD with rheumy leaning towards RA.  Plaquenil has helped, but not enough.  He didn't do the HLA- B27 - but I kind of wish he would - even though that's not a slam dunk either.  Degenerative disc problems run in my family as well (father, mother and sister), and my 31 year old son, who is extremely physically fit, injured his back (also in the lumbar, SI area) and was told by the physical therapist he had the back of a 45 yr old.   My Xray showed degenerative changes, but not necessarily inflammation, as in sacroiliitis.
 
Anyway - thanks for the thoughts and the clarification.  Wishing you all good days with less pain to contend with.
Lucy
 
 
 
 

too young..too old
Regular Member


Date Joined Apr 2011
Total Posts : 56
   Posted 4/16/2011 12:28 PM (GMT -6)   
Maybe you can call around and ask some of the therapist if they have any experience dealing with patients in your situation. Do you know anyone in your area who has experiences like yours? I found my therapist by asking my grandmother's friend with RA which therapist she likes. Most people who have similar auto immune diseases will be able to relate to you (which is why I joined this forum-I dont have many people in my area to relate to) and there may be a chance that he/she has seen a therapist for similar problems with good results.

I know exactly what you mean by missing the old days. I used to be able to live a fairly normal life (or...someones idea of normal), but now car rides, planes, my honeymoon, going to work, trying to clean, walking my 7 lb yorkie....things get harder. It is ok most days. Most of the time I have the ability to "accept" what is condsidered "normal" now, but other times I have a hard time. I have two friends getting married this year and trying to keep up with wedding stuff with them is very difficult. Most of my friends have small children and I cant keep up with them (adults or kids) during an outing. I am only 28. I have no kids (that is a completely different thread). Most of the time I can tell myself, "this is your life...this is reality....the treatment is intended to prevent further damage...pain will never go away...damage is already done and that cant be changed...stop feeling down" and all of that other good stuff to snap out of it. But ther are also the days when I feel like it is ok to feel down bc...crap Im 28 and feel 60! Then I remind myself that I am feeling pretty good...all things considered and I cant let myself give up.

Lu2011
Regular Member


Date Joined Apr 2011
Total Posts : 291
   Posted 4/19/2011 6:52 AM (GMT -6)   
JFG, you are very strong.  We have all been dealt a bad deck of cards.  Myself I have 2 young kids and it's hard not being able to run around with them as I'd like and even not lift my little one when possible (e.g. if someone else is around).  Sometimes I cry in pain and in the situation and then i think of others who are worse off...such as my mom who cannot walk at all with ms.  Still, life is unfair, isn't it?  Keep up the strong attitude of fighting this (and yet it's normal to have down days too).  hugs.
 
PS - I'm in the middle of dealing with a flare up for a week now.  Yesterday I was getting pinching pain all day at the back of my leg at the top where it meets my bottom (i.e. warning of shooting pain). I did have to lift my 2 year old a few times yesterday.  Well overnight I moved in my bed and the pinch was stronger.  Then I sneezed and OUCH!  I could tell I just cause the shooting pain.  Got up to teh washroom and couldn't put any weight on it.  How do I get this better?  Seems 2 steps forward, 2 step back. 

Post Edited (Lu2011) : 4/19/2011 6:19:18 AM (GMT-6)


lucysgd
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Date Joined Jun 2008
Total Posts : 658
   Posted 4/19/2011 10:54 AM (GMT -6)   
Sounds miserable, Lu - I'm sorry you're having such a bad flare.  It does sound a little like sciatica.  I have had great help from an exceptional neuromuscular massage therapist.  It's important to find a good one - I've been to 2 others who couldn't hold a candle to the one I see now, though they were trying, but even they were helpful in the acute situations
 
I also had some PT during the worst of my sciatica flare - shown exercises to do - which eventually did seem to help - there was one in particular that seemed to get the pressure off the nerve that was causing the pain.  Can you see your doctor and get referrals?

Lu2011
Regular Member


Date Joined Apr 2011
Total Posts : 291
   Posted 4/19/2011 11:42 AM (GMT -6)   
Lucy, thanks for your post. I just find that once I'm in a flare up, it's hard to get rid of it (and doesn't help that i need to continue lifting my 2 year old...plus I do a lot of sitting). I've been diagnosed with sacroiliitis. When I see my dr next in July, I am going to ask him what exactly causes the shooting and pinching pain...esp when not always originating from teh SI joints. Someone on here suggested it's the pireous muscle (spelling?)...which when i read it up, makes total sense, as it irritates the sciatic nerve.

Sounds like PT really has helped you. I do have a recommendation from my rheumatologist, have yet to call them. It's a matter of finding time, plus it's $$$ when going a lot plus I'm a bit scared of it making me worse and causing flare ups.
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