Sacroiliitis: My Story

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Kate81
New Member


Date Joined Apr 2008
Total Posts : 8
   Posted 4/16/2008 2:33 PM (GMT -7)   

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.

 

Thanks! ~Kate


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 4/16/2008 10:42 PM (GMT -7)   
Kate , all I can say is I wished with all my heart that I could help you with this pain. I to had arthritis since I was in my twenties. Due to the use of so many pain medications. My entire body is messed up. Now I can't take anything for pain. I did try the oxycodone at one time it made me break out in hives. Your not alone. Keep posting it helps to get it off your chest. I'll be saying prayers for you. june

Kate81
New Member


Date Joined Apr 2008
Total Posts : 8
   Posted 4/26/2008 2:40 PM (GMT -7)   

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.

~Kate


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10391
   Posted 4/26/2008 3:01 PM (GMT -7)   
Kate, I have sacroiliitis associated with ulcerative colitis. I know what you're going through, and I agree no one deserves to hurt this way. I hope you can find some relief soon.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


NoblePath
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/16/2008 11:25 AM (GMT -7)   
Hello there,
I was just wondering if you've considered physical therapy. I just got diagnosed with sacroiliitis in May of this year. I am starting physical therapy in a few days. I did see an orthapedic doctor last week who confirmed the original diagnosis but discounted the idea of physical therapy helping, but I went to the original doctor and she referred me to physical therapy. During my evaluation they noticed that my pelvis is rotated and think they can do some things to alleviate some discomfort. I am 23 myself, and I know what you mean by the anxiety and all the questions you asked in your post. No one understands when you're young why you can't do some normal everyday things. I will be posting my own story if you're interested. I truly hope things have improved.

Krissi

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/20/2008 8:40 PM (GMT -7)   
Hi KAte,
 
I'm another one with bilateral sacroiliitis. I understand 100% the pain you're in. It's awful.  I've done physical therapy as well.  I also apply a topical steroid cream (10% cortisone - very powerful).  It works really well.  I can't take those potent pain killers either.  It's a very difficult condition to manage.  I wish you much relief.
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


moore
New Member


Date Joined Mar 2009
Total Posts : 1
   Posted 3/19/2009 9:57 AM (GMT -7)   
I was diagnosed with Sacroiliitis about a year and a half ago with an x-ray. I recently was diagnosed with Lymes desease which is known to cause inflamation and joint pain and have been on medication for a few weeks now but will need to continue for a year. I know that sacroiliitis can be caused by infections and my doctor ordered a test for my DHEA levels and some how was able to make the connection that it was caused by infection...I thought this may help because as far as I know sacriliitis is a symptom that can be cause by a number of factors. If you can get to the cause of your condition you may be able to get more specific treatment. I am as well young only 25 (dealing with this for 4years now trying to get answers) and it is so hard to put your life on hold due to something you have no control over....what keeps me going is my will to fight this and find whatever answers I can. Constant research and determination is what got me to a treatment plan and if I would have let this go on it is progressive and would have caused long term problems down the line. Keep your head up and keep going never stop and listen to your gut. If you feel you know something isnt correct with a diagnossis or feel you dont have the best treatment of care you have to do what ever you can to get it.  

Brie1979
New Member


Date Joined Apr 2009
Total Posts : 3
   Posted 4/6/2009 7:38 AM (GMT -7)   

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....


mserin
New Member


Date Joined Apr 2009
Total Posts : 1
   Posted 4/30/2009 1:08 PM (GMT -7)   
Hello Kate,
I suffer from Sacroiliitis as well. I have suffered from this for years thinking it was a tailbone issue and nothing could be done about it. Well we decided to start a family and when I got pregnant it really started to bother me on a daily basis. I kept telling my Obstetrician that my tailbone was killing me and after the third vist and me telling him the same thing over and over he pressed on my tailbone from the inside during an examination and of course that was not the location of the pain. He then sent me to an Orthopedist, after an examination he then diagonosed me with Sacroiliitis. So what can we do about the pain, I asked. I was 17 weeks pregnant at the time and he said they could do a steroid injection but he would highly suggest I wait until I was further along and the baby was more developed. He also said that the pain would only get worse as I grow and boy is he on the money. So now I am trying to hold out till the third trimester in hopes that a steroid injection will give me some relief but I am miserable. Just a suggestion before you start a family be at a point in your life that you can lay around most of the day b/c that is the only time I get any sort of relief. Good luck to all of you who suffer from this. Take care.

Erin in Louisiana

The Reverend
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 5/1/2009 7:43 AM (GMT -7)   

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.


Someone started it someone will end it, we must endure till the end


Shanno
Regular Member


Date Joined Aug 2009
Total Posts : 64
   Posted 8/6/2009 6:36 PM (GMT -7)   
Post is a bit old but I'll post anyways

I'm 27 and have had AS for 14 years. pain pain pain for most of that time, though nothing compared to the pain of sacroillitis. Im a shell of my former self. I was diagnosed mid 2008 with sacroillitis. in early 2009 I had a CT Guided cortisone in both SIJ's, which was one of the most painfull things I have ever experienced. instead of getting better after 3 days, the pain got worse. I couldn't get out of bed. I begged my rheumy for painkillers but he was pretty much unresponsive and evasive. I'm pretty sure now he thought i was just trying to get high or something (!) I had a week to wait before getting into my doctor who is a great guy. I ended up going into hospital and explained the situation to them - they gave me a script for Endone which helped dull the pain a bit, but not much.

When i got to see my doc I was an absolute wreck. I hadn't slept in about 6 days and I went to pieces on him. Looking back it was a VERY traumatic time for me. he put me on MScontin, endone & valium, quite a mix I know but nowadays it is the only way I can be at least comfortable. Valium helps control the muscles - they seem to spasm in an effort to protect the joints and as time goes on, I find that this happens more often. People tell me if I'm cold to get a jumper on - I am trembling from all of the contracting muscles in my body trying to protect the SIJ's and the bottom half of my spine, all of which are fusing.

when I saw my rheumy after all this happened, the look on his face said it all and realised how much I went through - I am now booked into a pain clinic next month. I really need to get a lid on this because it is eating me alive - I am finding it harder and harder to concentrate at work and I also feel I am becoming a burden on the people close to me. One of the things I am trying to find out is how long the fusing process is going to take?

This disease really SUCKs

luvandfishes
New Member


Date Joined Aug 2009
Total Posts : 6
   Posted 8/28/2009 9:17 PM (GMT -7)   

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:)


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 8/28/2009 11:06 PM (GMT -7)   
Hives= Allergic Reaction

IF you really do have Chronic Hives, it would be different. Why? I got it. You'd break out in hives all the dang time, for no reason. The air, the clothes, the animals all of it.

Get a Rheumy you LIKE and one that will listen. Where to look is at a teaching hospital.

And I have it, but I dont list in my DX because I am fixing it. How to fix? Exercise because you need to lose weight. Eat healthy. Basicaly in laymans terms this is arthritis in your lower back because your body cant handle the wieght.

And you need to get to a Rheumy. You have a autoimmune disease. You need to listen to them or you will be in pain. With your white cells off, you need a Rheumy and you need one now. If it gets too high, it can lead to serious disasters.

This is out of my PERSONAL experience, moderators not my medical experience. I am now in Remission from a tumor. I have autoimmune diseases, and I know how it is.

And Kate, I'm 28.
 
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis
Medications:  Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D, Pro-Air, Pepcid, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl
Undergoing Radiation Taking Lorazepam (Ativan) on Radiation Days


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 8/29/2009 10:47 AM (GMT -7)   

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.

 


luvandfishes
New Member


Date Joined Aug 2009
Total Posts : 6
   Posted 8/29/2009 11:06 AM (GMT -7)   
I would have to agree.  This is autoimmune for many and not just caused by excess weight or weak core musculature.  Personally, I am 5'6 and 146 pounds...  I lift weights, play sports when I'm up to it and was described as "robust" by my Rheumy.  I have very strong abs that can support my body weight.  I agree completely with finding a Rheumy that you like and that you trust.  Mine knows that I cannot stop to rest (am a grad student in exercise physiology) so he is aggressive with my treatment so that I can get back "in the game" so to speak.  The other interesting thing about something like sacroiliitis is that some people do not exhibit the elevated white count that traditionally is a hallmark of inflammatory disorders.  I have a normal sed rate most of the time and my neutrophils and eosinophils are well within normal limits.  That does not say that they are not high for me though.  Individual variation should be taken into account when reading these tests.  If you do not think that your doc is doing so, you can get a copy of all your labs and see what your counts look like when you are feeling good versus when you are in pain. 
 
peace
aubs

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 8/29/2009 11:49 AM (GMT -7)   
hey fishes, can i have your weight please??
 
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis
Medications:  Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D, Pro-Air, Pepcid, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl
Undergoing Radiation Taking Lorazepam (Ativan) on Radiation Days


luvandfishes
New Member


Date Joined Aug 2009
Total Posts : 6
   Posted 8/29/2009 4:32 PM (GMT -7)   
of course - I am 5'6 and weigh 146. We do body composition stuff in labs at school so I can tell you that according to air plethmysography I am around 23% body fat. It's a bit high for my norm but I also have a mid-size to large frame.

happy weekend:)

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 8/31/2009 6:45 AM (GMT -7)   

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 shakehead  

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?


luvandfishes
New Member


Date Joined Aug 2009
Total Posts : 6
   Posted 8/31/2009 12:22 PM (GMT -7)   
Hi momto:)
I'm new to this so my docs (GI and Rheumy) have me on 6MP, Humira, Celebrex (does nothing), and Vicodin. I have slowed waaay down on my training but they are only suggesting "low impact" exercise at the moment. I got cocky Saturday and went for a run. Felt great the morning after but miserable the rest of the day. Also, yesterday I ended up playing tennis (spur of the moment impulse) and couldn't get out of bed until 2pm today and am still in pain. This bites!
Don't be too disappointed at your bf%. Remember that you are in a compromised state at the moment. I am experienced at training individuals with special circumstances and would love to talk about some potential exercise possibilities for you but I would need to know more about you and your situation first. You can email me at aubreybaxter@charter.net if you would like some advice. Making progress in the gym isn't your primary job right now but healing your whole self is.
I really hope you feel better. This is a new thing for me and I cannot believe how painful it is. Unreal.

aubs

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 9/1/2009 6:47 AM (GMT -7)   

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 rolleyes  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!


Pensacola74
New Member


Date Joined Sep 2009
Total Posts : 1
   Posted 9/21/2009 5:51 AM (GMT -7)   
Hi Everyone! I feel your pain! I am 35 and have SEVERE low back pain. I was diagnosed with Sacroiliitis & I get terrible knots in my back. I hurt all over! I've also tried EVERYTHING under the sun to get some relief. I have been suffering for so long, I don't know what it feels like to be pain free.

Since the doctor's can't give me an explanation as to what is causing my pain, & my doctor LAUGHED at me at my last visit....YES! I decided to figure it out for myself. I think that I have figured out what is causing my pain...Celiac Disease. Celiac disease is an inherited, autoimmune disease in which the lining of the small intestine is damaged from eating gluten and other proteins found in wheat, barley, rye, and possibly oats. Your body attacks itself when you eat gluten. It damages the villi in you small intestine. If left untreated it can cause so many health problems. Have any of you ever considered this? Do a google search for Celiac Disease and Sacroiliitis or Celiac Disease and low back pain. Celiac Disease can run in families and most people haven't been diagnosed. It takes 10 years before most people even get diagnosed. Not everyone has the same symptoms. Weight loss is listed as a sympton, but weight gain is too. Google your symptons & Celiac Disease.

Here is one page that made me cry because people share my pain and can understand.
http://www.celiac.com/gluten-free/index.php?s=3c6b3d92a278626a7bab5b46dab37789&showtopic=61803&pid=560631&st=0&#entry560631

If you do suspect Celiac Disease, it WILL NOT show up on regular blood tests. You HAVE to do a blood test called a Celiac Panel & a biopsy of the small intestine. I have also learned that doctor's are very uninterested and very much uneducated with this disease. There is no pill to "fix you" so they don't test you for it. You have to eat a gluten free diet for the rest of your life, so basically, you heal yourself. I have done so much research on this. I am getting tested for Celiac Disease & I go tomorrow to get tested for Osteoporosis due to malabsortion issues.

I have been diagnosed with having so many different things wrong with me, it's ridiculous!! I have serious digestive problems..my stomach swells like I'm getting ready to have twins and I have acid reflux, my doc said, "take Miralax EVERYDAY and take Prilosec OTC." I have pills for Depression, thyroid issues, pain, muscle relaxers, allergy medicine. My gallbladder was removed when I was 25 and ALL of my health problems can be caused due to having Celiac Disease.

My mother passed away almost 3 years ago from Cardiomyopathy & untreated Celiac Disease can lead to Cardiomyopathy. If untreated, it can cause all kinds of health problems. She was 49 and didn't even know she was sick. She thought she had a sinus infection. I think my mom had Celiac Disease. I am on a mission to make sure that someone listens to me!! I don't want that to happen to me.

gfpamela
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 12/7/2009 8:20 PM (GMT -7)   
 
     Yes!  CELIAC disease.  It's now known that celiac disease is not just a disease of the small intestine.  It does cause so many different problems.  But I've found even gluten sensitivity can cause problems.  It's actually well known that many celiacs (up to 70%) have sacroiliitis.  Well, my sacroiliitis started about the same time I began having IBS symptoms.  I went gluten-free, on the advice of a doctor who didn't mention testing.  Over the next year it calmed down a lot.  Then about 4 months ago I started eating wheat to do a 'gluten challenge' to see if I did in fact have celiac disease.  I tested negative (for now) but my sacroiliitis is much worse; very inflamed.  I'm going gluten-free again so I'm confident that the pain will lessen again.  I know it won't go away completely, but I'll be functional again. Do consider a gluten-free diet.  It's not as limited as people think, when you look at all the different fruits, vegetables, meats and grains that can be included.  A good gluten-free bread recipe is important, and there are some good ones.  And unfortunately there are even lots of junk foods that are gluten free.  Anyway, do a search, as the previous poster said, for 'sacroiliitis and celiac disease' and see for yourself. 

darlo
New Member


Date Joined Jan 2010
Total Posts : 1
   Posted 1/10/2010 9:27 AM (GMT -7)   
hi, iam a 27 yr old female with two children.Ive resently found out ive got this horrible, painful condition.It took 8 mths to find out,tests and tests,mri until i had ct scan.It was from having my secound child,while i was pregant i suffered a coundition that was very painfull and unable to walk. After having sophie my lower back would hurt,buttocks and leg but after rest it would ease,then in april it was back and been in cronic pain ever since.I feel for everyone how is suffering from sacroilitis,its horrible very painful.My husband helps alot but it gets me down because he should not have to work then look after me and kids.Ive lost my job recently through long term sickness.Ive had physo,injection into joint,anti inflamaties,painkillers,ho***er bottles not one thing works.I am sick of hearing me saying' my back is killing' and i feel everyone else is sick of it.I have never been so low,i am very active,out going person,but having sacroiliitis is hell.Its nice to see topics with people how is going through the same,because people dont relise how painful it is.If anyone has any tips,treatments please help. cry

Brig
Regular Member


Date Joined Apr 2008
Total Posts : 33
   Posted 2/7/2010 8:15 PM (GMT -7)   

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.

 


sacropainhelp
New Member


Date Joined Feb 2010
Total Posts : 1
   Posted 2/10/2010 4:17 PM (GMT -7)   
I am 31 yr old female and just diagnosed with sacroilitis.  I was mis-diagnosed for 2 yrs with issues with my siactica.  I just had injections of cortisone yesterday.  I have been in pain now for 3 yrs, taking NSAIDS for 3 yrs.  I have been to physical therapy for siactica.   I used to run 5 miles a day and/or workout for at least 1 hr a day.  I have pretty much stopped working out due to the pain assiociated with it.  Will I ever be able to work out again?  I'm getting married in 4 months and REALLY want to be in good shape for my wedding!  I want to try yoga and/or pilates as soon as my dr. says I can start working out again.  I have always struggled with weight management and in the last few years I have become really in love with working out and have loved the benefits on my body.  I have been so depressed from the pain and inactivity lately.  I am so scared that this will be something I will have to "deal with" forever.  Has anyone gotten any relief from this disease or been able to stop the progression?   
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