I'm a 26 year old female and was diagnosed with Sacroiliitis about 2 years ago. It started with intermittent pain in the hip area. When severe back pain during the night started keeping me awake, I went to see an orthopedic specialist. He ran blood work and sent me home worried about a slightly elevated white blood cell count. However, he failed to mention that I tested positive for the genetic marker HLA-B27. Luckily I had asked for a copy and "googled" it when I got home. I matched so many of the symptoms; I didn't know which Spondyloarthropathy I had, but I knew I needed to start with a Rheumatologist.
I have been diagnosed by 3 Rheumatologists with Sacroiliitis. Why have I switched doctors 3 times? I'm not sure what I am looking for that I haven't found.....Compassion? I am too young to hurt the way I do, and I just want someone to really care.....Decisiveness? I don't want a brochure about Enbrel to take home and consider and don't ask me what medication I want to try. You're the doctor; tell me what I need to do….Explanation? I'm worried and I don't always know the right questions to ask. This is a big deal, and I deserve to understand why I hurt and what to do.
I began by taking a number of different anti-inflammatory drugs. I found some temporary relief, but I began getting severe hives. An Immunologist diagnosed me with chronic hives, which is aggravated by all NSAIDs. My pain was mostly at night and my hip/SI pain during the day was very random and more annoying than agonizing. For the past few months, the pain in my SI region has become more often and more severe. I am worried about how it may affect my career. I hate the Oxycodone they prescribed because it makes me feel nauseous and a little too fuzzy to perform optimally at work. I had SI injections from a Pain Management Physician earlier this year. They worked great for about 6 weeks the first time, but when the pain returned, the next set of injections didn't alleviate the pain at all. Tomorrow I will receive the 1 of 3 series of injections in my back that they will put me to sleep for. I hope they help.
I have avoided Enbrel because of the side effects, but I fear that I may have no choice. Even if these injections help the pain, they aren't slowing the progression of the disease. I suppose I needed to vent my story more than anything, and I appreciate your allowing me to do so. It seems like I hurt all the time lately, and I’m really scared. I would, however, like very much to hear about other's experiences. Especially as it relates to:
1. Pregnancy and childbirth with a Sacroiliitis or other Spondyloarthropathies (I want to start a family in a few years.)
2. Enbrel and other TNF Blockers
3. Anti-inflammatory injections.
Thank you for your kind words June. I have never been in a chat room or forum before, and I think it is helpful. It provides perspective. Sometimes I feel like I'm all alone with this, and it is important to realize that there are a lot of people feeling the same way. At 26, I don't personally know anyone who can't sleep or spend a day walking around the mall or has to spend most days off at dr appointments. My friends don't understand at all what it's like to not be healthy. I try not to feel like I'm throwing myself a pity party, and I try to stay positive, but it can be difficult at times. Your support is appreciated.
Hi there Kate, my story is similar to yours and the effect this horrible thing is having on my life. Im a 29yr old female and dx with bilateral sacroiliitis... And finally somebody who knows the pain Im talking about!!! For me it is excruciating. I have been continously to a chiropractor, physiotherapist who practises acupunture. I have also been to an oesteopath. I have been on anti inflammatries and pain killers for months . I dont sleep for more than an hour at a time, because as soon as I move the pain is enough to wake me. I use heat creams, heat packs, warm baths, ice packs, sleeping with pillows between my knees, no lifting, minimal bending, had a week of rest off work, but to not much relief. I bent over and emptied the dishwasher and almost immediately pain returned. I had some relief from the acupuncture as it releases the tense muscles I have in my lower back, buttocks and thighs, but the pain returns or the acupuncture is 'undone' with 24 hours or so... I am the process of trying to get an appointment to have CT guided cortisone injection, which I am not that keen on, (I have heard stories about infertility, its lack of effectiveness, weight gain... INFO ANYONE???) but I dont know where to turn. Im too young for this and it is effecting my entire life. Ive become a burden to my family, boyfriend,lost friends because after I struggle through a day at work I cannot manage to socialise. I cannot perform my job properly (I manage a liquor store, alot of heavy lifting, moving, bending, kneeling which lead to my sacroiliitis) I dont know if I really had anything to help you with, I seem to be rambling. I just had some relief when I realised there are other people like me out there. It is so hard to get anybody to understand the pain Im in 99% of the time, I have very little time without it... Im sorry if this has made you feel bad or worried you, but its just one persons experience, unfortunately its not a good one. Im crossing my fingers yours is not like mine, I wouldnt wish this on anyone. I am wondering if you or anybody out there since these posts have been made, have found anything to relieve their pain and discomfort? Even the tiniest 'tricks' they use for relief. Or what treatment has worked the best? I really would like to discuss this further and hear other experiences. If you have had any success since your first post Kate? My true hope is that I can get back to full working capacity, lose the 20kg I have put on since I have had this (about 6 months), I use to be very fit and my physical job helped with that. I am almost hoping to have children soon, but have been told I would not comfortably be able to carry them, And would have to be on complete bed rest for majority of a pregnancy. And I want to enjoy a pregnancy! I dont want to be a pregnant woman to whom pregnancy is a hinderance. I want to be the fun, lively, fit self I use to be. This has changed me dramatically, I am a completely different person than I was 6 months ago. I suffer deeply from depression and I feel it leads back to sacroiliitis and the affects in life it is having...
Im sorry for rattling on, but I have needed to let this all out (I feel better just doing so!)
Thanks Brie, Australia Thanks for listening/reading... Hope to hear from someone....
G'day Kate I have Ankylosing Spondalytis and have tried all the TNF drugs, the doctor will ask you if you want to take them as they have a lot of side affects and I can remember signing a form when I started on embrel and I am sure it was a waver from prosecution form to protect the rhuemy. All drugs have some form of side affects steriodal meds effect the heart and blood vessels and your kidneys and liver.
NSAIDs well you know theirs already.
And TNF blockers are what they like to call there wonder drugs have lists as long as your arms.
That includes increased risk of cancer but we must way up the differences and what will work on you and your life style. you should start slow and ask questions when you go to your doctor about all meds and you can also ask your pharmacist about info on side affects but having a child on any meds is risky especially TNF blockers as they reduce your ammune system and you and your child will be susceptable to a lot of diseases nasty.
There are a lot of different pain killers out there that work with different problems and different strengths.
It is mind over matter if you want it bad enough it will happen
I would suggest if you are looking at having a child do it sooner than later as you will only get worse and the pain stress on your hips? Thank God I'm a man.
Look at water exercises to strengthen what muscles you have around your hips back and stomach. This will help.
Hey all. So, I came here looking to see how you guys deal with this SI business.
Shanno - Wow! You must be so strong to have dealt with this for so long. I commend you and hope that you find relief soon. I have Crohn's disease and am experiencing sacroiliitis. I have been through all the TNF alpha blockers at this point. They either control the tummy troubles or the joint probs but usually not both. Just started taking taking higher doses of pain killers and had to stop my normal physical activity because it hurts so much. I am just impatient but I want to know what I can start doing to be active NOW... It's a big part of my life and not exercising impacts my mood, research, and studies. I think my Rheumy will be in touch with me next week regarding my x-rays and physical therapy but I really want to get moving asap. Any suggestions? I typically do everything. I love running, cycling, hiking and used to teach kickboxing and other aerobics. Is there anything that is both low impact and fun?
I hope that you all have a good weekend and find a moment to do something nice for yourself:)
This post is a bit dated but I have RA and recently I've been having a great deal of pain in my spine as well. I'm unable to lie on my back or my right side or even sit down at times, it's miserable. The pain goes all the way to my tailbone and into my hips but I'm already taking MTX for my RA. I don't know if I have what has been posted, but I will look up the sacrolitis.
Kate..I hope you have gotten some relief.
Smurfy...I'm glad you are on the mend but this isn't always caused by weight. I'm 5"0 and weigh 104 and have now developed this excruciating spine pain.
The horrifying thing is, I had my body fat count taken a few weeks ago and at 5"0 and 104lbs, it was 26.5
luv...what does your rheumy prescribe that you are able to work out? I currently take just the MTX and I can go one day at the gym but the next day, I'm out of commission and it seems to be a constant pattern. I never make any progress! Now with the back pain, it's even worse. Any advice?
Hi and thank you:)
Basically, I've been on just about everything from NSAIDS to Enbrel, even Plaquenil and at this point, I'm down to the MTX/Darvacet. I used to run on the treadmill before I got a horrific stomach virus, followed by joint pain that never went away. I've been going to the same rheumy for over 4 years now. My husband and I joined this weight training class and the first class was great, but now this is the third class and I now also have GI issues tossed in with megaloblastic anemia which I'm trying to get a handle on. I share your frustration!!! My husband was telling me last night that he could "only" run 2 miles on the treadmill really? I thought to myself, you're talking to someone who can't run at all!!! Be happy with your your 2 miles! When I joined the gym class, I had hopes of getting firm and in shape (I'm 38) but so far not yet! I will email you, thanks so much!
Hi Everyone. I just came across this post after searching 'pregnant with sacroiliitis and Crohns'. I was diagnosed with sacroiliitis and Crohns in 2007 when I was 25 and I have found everyone's story a help. I feel for you all and understand the emotions that take over so often.
I had seen so many doctors over the years who were unable to work out what was wrong with me. I would complain of bowel problems and pain everywhere especially in my hips but the sides swapped all of the time and I started to feel like a hypochondriac. Then finally one year a diff Dr took my blood again but came up with some results. He found the gene HLAB27 and sent me to the Rheumy. I go to the Rheumy who asks me to get blood and X-rays AGAIN. By now I have so many X-rays sitting at home and have had so many blood tests that I chuck a tantrum (by my self) and don’t go back. Christmas comes and I suddenly get so sick my body is not functioning. I cannot stand long enough to wash the dishes, am in severe pain 24 hours a day and weigh 51kg so I go back to the Rheumy who says you have sacroiliitis and Crohns Disease, go to the gastro, get treatment, get the Crohns under control and it will for now control the sacroiliitis - so I do.
For the past few years my number 1 priority has been keeping the Crohns under some sort of control with steroids and 6MP. This has also helped the sacroiliitis and the pain in my hips, back and legs. I hardly gave the sacroiliitis a thought. The 6MP is now working well, I am use to the fact I have Crohns, I know many different ways in helping and managing the Crohns and I am not taking any steroids but now I am pregnant and I feel that now the sacroiliitis is increasing in pain by the day so now I have to deal with the fact I have sacroiliitis.
I am hoping to find any helpful tips on managing or helping the pain naturally if any. I hate the fact of messing around with my current routine of daily drugs and hate the thought of adding more drugs when pregnant. Any info at all will be greatly appreciated.