I'm Back about Back

@capper I’m sorry you’re having issues, and I also hope the Entyvio helps soon. Did you stop any other medications when you started the Entyvio?

The back problems sound like they are probably unrelated to IBD. Disc issues in the spine are pretty common. I had a severely protruding disc a few years ago that got bad enough to require urgent surgery. The clue that it had become urgent was that in had affected motor function in one leg. Fortunately my surgery was a complete success, and I was able to go back to full activity. A new mattress could potentially help, but only if it relieves the pressure on the spinal nerves. If we weren’t in the middle of an out-of-control pandemic I’d suggest patiently trying a variety of mattresses at a mattress store. I don’t know of a good substitute for this.

Scott, thank you very much for the quick response.  I am glad to hear that your back problem was successfully dealt with surgically.  I understand that for most back issues, surgery is a last resort.  By the sounds of your situation, it was an emergency.  Have you had any comprises to make since then?  Has your back  health completely returned to normal without any current issues?

I agree that it is likely unrelated to my IBD and surgery.  I have thought about what you mentioned - try different mattresses.  Obviously during the pandemic it is likely not possible.  The only thing is that I am not sure I would really know how a mattress would be good for me unless I have a chance to sleep on it for at least one night -- possibly a few! 

The lumbar disc issues are probably unrelated to any GI issues as Scott said. I would be interested in knowing your age and whether the MRI commented on degenerative issues or degenerative changes. Degenerative disc disease potentially can deteriorate and lead to these issues. Generally the kinds of issues you are describing are usually due to some trauma to the back (car accidents, sports, physical activity) ,degenerative issues, or some combination of both. I would recommend consulting a neurosurgeon. Various treatments include physical therapy, epidural steroid injections, pain meds and surgery, usually in that order.

I happen to have very bad cervical stenosis, which is hereditary and age related. My father has the same. A few years ago it was causing me a lot of discomfort and I went to a local physical therapist who was super. He implemented various stretching exercises and cervical traction, which completely alleviated my discomfort. The PT's conclusion was that I actually had a pinched nerve. I suspect your situation may not be as responsive to PT, but nothing ventured, nothing gained. Good luck.

BTW curious about one thing- did they make you do PT before authorizing the MRIs? I wanted an MRI on my neck but my insurance company would not authorize it until I had a course of PT. A lot of people think they can get scrips for an MRI easy peasy, but that's not usually how it works. They can cost a lot. Although I had x rays on my neck showing the stenosis, I never had the MRI after the PT resolved my issue.

@capper posted:

Scott, thank you very much for the quick response.  I am glad to hear that your back problem was successfully dealt with surgically.  I understand that for most back issues, surgery is a last resort.  By the sounds of your situation, it was an emergency.  Have you had any comprises to make since then?  Has your back  health completely returned to normal without any current issues?

I agree that it is likely unrelated to my IBD and surgery.  I have thought about what you mentioned - try different mattresses.  Obviously during the pandemic it is likely not possible.  The only thing is that I am not sure I would really know how a mattress would be good for me unless I have a chance to sleep on it for at least one night -- possibly a few!

My back has completely returned to normal, and after a suitable period I resumed all activities, including martial arts. I’m probably a bit more cautious now, less willing to try to touch my toes, for example. Back surgery is sometimes much less successful, of course, particularly if they try to fix a bony problem rather than a pure disc problem.

Some mattresses come with pretty good return policies, so you could try them. It can be close to impossible to get a mattress back into the box it was shipped in, though, so it might be worth limiting your choices to companies that will pick up the thing if it’s unsuitable.

CT- pardon my naivety, but what exactly is PT?!  To answer your question though, I'm a Canadian citizen living in Canada (please don't hold it against me!), so MRI's are 100% free as it's covered by our medicare here.  Having said that, it can take months to get an MRI appointment in some cities.  I currently live in a small town of about 8,500 and they just got an MRI machine about 18 months ago.  This makes it way more convenient and also speeds up the process bigtime.  I have had 2 or 3 MRIs since I moved here in August of 2018.  I had my most recent one for my back, I had one for my digestive tract that was ordered by my GI last year, and I believe I also had one for my hip (which had been acting up).  Fortunately, my hip has been much less of an issue over the past 18 months or so. 

So, what the heck is a PT??

PT = Physical Therapy. I thought I said that?

OK here in the USA MRIs cost money (anywhere from $1500 to $3000 usually) so insurers or at least some of them compel a course of physical therapy before any MRI exam. The usual course of treatment for the back conditions you mentioned are physical therapy, epidural steroid injections, pain meds and surgery. As mentioned above I would get a consult with a neurosurgeon. Surgery is a last resort but most good neurosurgeons will take the conservative treatments (PT, steroid injections, pain meds) and see how you respond and recommend surgery only if the conservative nonsurgical approaches do not resolve your symptoms or provide appropriate relief.

A big part of my job is analyzing treatment plans for these kinds of conditions as personal injury defense attorney. I usually see the same patterns of treatment with disc injuries regardless of whether they are traumatically induced or from degenerative disc disease.

One other thing I know from having deposed one of the best neurosurgeons in this area. MRIs are viewed as "stale" or "past expiration date" after 10 months for purposes of surgical planning. So depending on how old your MRIs are, nobody should operate without one having been done in the last 10 Months. Even if it's close to 10 months most surgeons going into a surgery will want an updated one. There can be changes that happen over time due to trauma and due to degenerative changes.

Thanks for the explanation.  I do not know of any single event that would have been the cause of my back issues.  It seems like it has been a long-term problem that has worsened over the years.  I was a hockey goalie and played a ton of hockey including 5 years at the university level back in my 20s (I'm 52 now).  That certainly may have contributed to the problem. 

I remember the lower back pain while sleeping going way back.  I spent a total of 10 years living in Japan between 1999-2011.  I vividly remember the back pain from those days as well.  I thought that the firmer the bed, the straighter my back, and the better off I would be.  I slept on a futon all those years - which is basically a very thin mattress right on the floor.  It was about at hard as it gets.  I still had the same discomfort, sometimes worse than other times.  The only thing with the futon is that when my back got unbearably painful, sleeping on a shoulder was more difficult because of the hardness of the futon!  I used to sometimes sleep on my stomach years ago but that changed after suffering and more suffering.  Even with a really firm mattress, I found that sleeping on my stomach would cause enough of an arch in my back to makes things worse.

A cortisone shot every now and again could be the answer for me.  I had been having some hip pain, and a couple of years ago I was about to get a cortisone shot for that.  I never ended up getting it done and things seemed to eventually get better.  I'm glad that I never got it done as a result.

I try to keep myself in shape as best as possible.   I was a regular gym goer, until the pandemic shut the fitness centers down in April.  I could have rejoined this summer - and decided to take a 'wait and see approach'.  Sure enough, about a month ago as our province went back into a 'code red lockdown', they all got shut down once again.  I have still been working out at home, doing mostly body weight  exercises and cardio work.  Whether at a fitness center or at home, I often battle with days where I struggle with diarrhea, back pain, and fatigue.  As I am sure you know, when you have a day with excessive diarrhea and / or you back is really stiff and sore, it's a lot easier to relax at home than do a workout.  Over the years I have tried really hard to battle through and get that workout in even when not feeling very good.  Sometimes, the workout will even make me feel better, while other times it may just wear me down a lot more.  If I were to 'take it easy and relax' instead of working out when I don't feel great, there would be very few workouts being done!  I firmly believe that staying as active as possible and pushing myself physically is a very important part of fighting the back and digestive issues.  Of course there are times when I just take a break when I feel lousy.  I also believe - that despite adding more stress and discomfort to my lower back - doing exercises to strengthen those muscles is important.  It definitely fatigues those muscles even more and causes more stress on that area.  However, my feeling is that I need to battle through the discomfort and strengthen.  I think that it will help a lot more than not working those muscles.  I also used to sleep with a triangular padded leg elevation device.  I did so for at least a couple years.  However, I eventually found it to be very uncomfortable and sometimes added stress to my legs.  Occasionally it would cause my feet to go to sleep as well.  As a result, I switched back to using a pillow or two underneath my knees.  The way things have gone lately, I think I'm going to dig out that leg raise and try using it again tonight!

Another thing I find it that for a few years now, my fingers and toes seem to get uncomfortably cold a lot easier than they should.  Obviously, in nasty cold weather, this is expected.  But my fingers and toes tend to freeze in moderate temperatures when others are not affected at all.  When I officiate hockey games and need to use 'hotshots', 'heated insoles', and products like that, it's not normal!  When on the ice coaching in some rinks known to be comfortable and my feet freeze, obviously that's not normal  either.  Is this connected to my IBD situation or my back issue?  I have no idea.  Just some food for thought...

Sorry you are struggling; I definitely believe its possible for back problems to be associated with IBD. Do you have a J-pouch or Ileostomy???

Have you tried stretching exercises???

Yes, I have a j-pouch.  1-step surgery and takedown in July 2000.  The reason I suggested that my IBD could be related to my back problems is because it seems they began after my surgery 20 years ago.

I suppose I've never stuck with a specific stretching program just for my lower back.  However, I do a fair bit of stretching along with regular training, lower back included.

I don't want to be gross and disgusting by discussing this but I really want to hear if others deal with the same type of issues, and if so, if there is a specific reason or cause.  Another symptom / observation with my bowel problems.  I mentioned that I have been having a rough few weeks with increased difficulties.  One symptom that seems to stand out in recent weeks is having really loud and lengthy gas attacks.  Most commonly it happens while I'm in bed at night.  It can be very long and loud.  After a few times, I go to the restroom and it's mostly mushy diarrhea with some gas as well.  It seems to relieve me for a while but the gas may continue after that. 

It seems like a more recent symptom I have been having with my bowel troubles.  I am curious if others have had similar issues and / or if anyone knows if there is a specific cause for it.  In other words, it seems almost like a pattern.

Here is what I found:

Inflammatory bowel disease (IBD), which includes Crohn's disease and ulcerative colitis, sometimes overlaps with chronic back pain, including axial spondyloarthritis (axSpA) — an inflammatory form of arthritis.

I sometimes get back pain too but stretching has helped significantly. I would do 20minutes of stretching a day and see if that helps. Exercise in general helps back pain too.

Calcium and vitamin D intake can help too.

In addition to that, definitely watch the eating habits too. Raisin bran gave me the worst possible gas pains, it could be something in your diet.

I take multivitamins and calcium supplements fairly regularly.  More importantly, I use my Nutribullet or Ninja and make healthy shakes quite often (usually everyday, but at least 4-5 times a week).  I use fresh greens, tomatoes, and a variety of other fruits and veggies such as bananas, avocado, blueberries, strawberries, and other fruits (usually frozen.  I add some whey protein powder, and water and / or soy or almond milk (sometimes I add ice cubes), and blend it all up.  This way, because I can't properly digest salads and many raw veggies, I can drink them.  I absolutely love the shakes!

Have they confirmed you don't have osteoporisis?

No, but I doubt it.  I have had bone density tests done in the past and they have been close enough to the normal range form my age.  I suppose it wouldn't hurt to have it checked again.

Capper,

Cortisone or epidural injections can be used as a diagnostic tool. The pain generator source is more likely the disc issues, based on your MRI result, as opposed to arthritis or osteoporosis. When cortisone is injected its targeted at a specific disc level. If you then get relief, even of a temporary nature, you know exactly what the problem is. Neurosurgeons often work in tandem with physiatrists or pain management specialists who use injections as diagnostic tools at specific disc levels to see what the pain source is. Best guess based on MRI is L4 and that's probably where you get the injection. It also could be osteoporosis or osteoarthritis or rheumatoid arthritis but based on your MRI probably not, although until you see a specialist they cannot be ruled out. A bone density scan is the test for osteoporosis. The MRI would locate any degenerative issues, as I already mentioned, and none were indicated in your summary. MRIs comment on those things as well as arthritic changes which are or can be visualized on an MRI, if that's what is happening. So based on your summary no evidence to support that, but a specialist should view the films and you shouldn't rely on the radiologist report.

Who ordered and read your MRI? The whole point of an MRI is to get an interpretation from a specialist as to the pain generating source and then further testing as noted above can be done to target the source more specifically. It doesn't need to be a guessing game, it can be identified.

Scott, I forgot to include something in an earlier message in response to yours about Entyvio.  I have been in 360mg of straight codeine daily for 20 years since my surgery.  I have never stopped taking it.  I have tried both Flagyl and Cipro in the past for supposed cases of pouchitis.  Neither of them ever helped me.  Other than the codeine, no medications have ever really done anything to help me. That includes, enemas, suppositories, imodium, Humira, Remicade, and so far Entyvio.  I don't have a lot of confidence in medications as a result.  Prior to Entyvio, I never changed anything medicine-wise. 

I still feel kinda lousy.  I don't often count my daily bowel movements but maybe I should.  One thing I can say is that I have been waking up more than normal through the night to go.  Usually it's once a night at the best of times.  In worse times, it's 2-4 times a night.  In the worst of times, which are quite rare, I don't wake up till it's too late...

At any rate, these days a majority of my toilet trips sound like the bombing of Pearl Harbor!  Not pretty and you hope that the toilet has decent water pressure in the bowl!  Also, without my bidet toilets at home, I would have another painful body part to deal with...

I was diagnosed with ulcerative colitis in 2002 started the surgery in 2004. Between 2002 and 2004 I had arthritis in my knees but when I stopped taking prednisone that went away. I had my last surgery in 2008 and I have had back issues ever since but because of my age I was always told there was nothing wrong with me but my back has been getting worse so I went to a chiropractor last year, and he sent me for an xray and its inflammation and he assumed it has something to do with the ulcerative colitis. My GP wont do any tests she just said she would give me a cortisone shot... Since the cold weather hit this year, I have been in a lot of pain the past 3 weeks constantly... I am 30 and I feel like I'm 60. And I now have inflammation in my optic nerve in my eye... and I get tendinitis a lot everywhere... I have tried to do research and uc can cause a lot of this and uc is also an autoimmune disorder and u can get more autoimmune disorders... lucky us! I am at my wits end! I dont know if anyone is the same? Sorry for my rant lol

You may want to ask for a referral to a rheumatologist instead of wanting more from your primary doc or chiropractor. This is probably beyond their scope of expertise. That is what it took for me to get the proper diagnosis and treatment.

Jan

I have tried to get a referral but honestly my gp is useless. And I havent had a gastroenterologist since the ileostomy surgery ( 2004 ) and I havent been on medication since then either! I think if I had a gastroenterologist they would be more likely to refer me. I was even considering contacting my surgeon because its been like 10 years since I have seen him to get a scope done for my jpouch 🙄 and maybe he would refer me to someone 🤷‍♀️

I've had 2 surgeries in the same area.  The degenerative issues and stenosis is NOT related to IBD, colectomy, j-pouch, etc.  Sounds like degenerative issues, and nerve issues because of that.  Cortisone shots are very helpful for some, but they may only last 6-12 months.  The neurosurgeon should have or refer you to a pain specialist as well.  Degenerative disc disease is simply a matter of age, use, etc.  Kinda like a car getting older 😉.  Stretching, physical therapy, therapeutic massage and Chiropractic care, and pain medication (non-opiod) have been immensely helpful, and keep me going on a daily basis.  However, as I mentioned, I have had 2 surgeries, and the last was an L3/4/5 fusion (with 2 rods and 6 screws).  So, do whatever you can to find a way to make life bearable and livable before you need to have surgery.

I dont have degenerative discs or anything it's just all inflammation that doesnt got away the chiropractor thinks it's some sort of arthritis like axial spondyloarthritis which has been linked to pol with ibd 😞 and all of this was said by the chiropractor so take what you want out of that 😁😂

Bulging discs are signs of degenerative disc disease, but it does not mean surgery is imminent. The degenerative disease does lead to inflammation and there are multiple ways to deal with it. You can definitely have both degenerative and autoimmune inflammation going on. Your GP should be able to refer you to a rheumatologist. Sometimes you have to be a squeaky wheel.

Jan

My Chiro and a friend suggested that first before proceeding with a plan we need to rule out Ankylosing Spondylitis (AS) - as it seems well-connected to patients with IBD (both Crohn's and Colitis).  So I did some research on the topic.  It appears that this AS is indeed closely linked with IBD and the symptoms seem to resemble the problems I have been having.  I obviously searched this forum as well and found a few posts on it.

My Chiro friend is looking into it now and trying to help me find the right course of action to deal with the problem.   He is calling my family doc and another doc who has treated a lot of back problems in patients.  He is also recommending another MRI.  I just had one in January of 2020, but he is suggesting another one ASAP.

Over the past several years (at least I remember as far back as the year after my 2000 surgery), I have been experiencing the night pain.  I wake up at 5am with excruciating lower back pain.  The pressure and pain is intense, so much so that I have to lay on my side to go back to sleep.  It happened yesterday morning.  I woke up in agony very early.  The next couple of hours was a huge struggle switching from side to side.  I'd be on one side and my shoulder would get so sore that I would have to roll over to the other.  It was a constant battle.  This morning I woke up again in agony with that lower back just blazing in pain.  So I rolled over to my side.  A while later I woke up and my entire arm I was laying on was asleep!  Most of the time in recent years I would suffer from this same predicament, then I would get up and go about my day and practically forget about all my suffering.  Lately, the stiffness and soreness does not full go away once I am up and moving around.  It lingers through the day with a lot of discomfort.  Sitting as a desk can be very uncomfortable, as can driving long distances.

I have thought about getting a new mattress.  I know exactly what will  happen...  It will feel better for a week, maybe two or three, and then I will be back right to  where I was before.  Eventually, the mattress will conform to my back and the intense pain will return.  I have travelled a fair bit over the past few years so I have come to understand how hotel beds or beds in people's home where I have stayed will impact my back.  Trust me, if there was an easy solution - even to alleviate some of the pain/pressure - I would be all over it.

I will admit that the dangers / long term issues associated with AS are quite scary.  Especially when the fusing occurs and your ribs get involved.  I hope there is something I can do to treat my symptoms successfully once it is properly  diagnosed.

In previous years I suffered a fair bit.  Most recently, the pain / pressure has become even more intense and has affected me a lot more during the day as well.  The biggest change is that it has really been affecting my day-to-day life now which is obviously extremely concerning.

As far as my current treatment goes, I am on Entyvio at present.  I started on Nov. 6, 2020.  My second infusion was on Nov. 19.  My third was on Dec. 18, and I just had my fourth on Feb. 12.  So I have done the 0-2-4-8 week cycle till now.  I have not seen any improvement bowel-wise.  Everything seems exactly the same as previously.  The back issue seems even more challenging as of late.  After all, I have dealt with the daily diarrhea for 20.5 years since my surgery and several issues for about 8 years prior.

Just to give you an idea of my lifestyle...  I am day trading at the moment, just working from home.  We built a backyard rink and I have been out there everyday the weather hasn't been ridiculously cold.  I recently got a set of adjustable dumbbells for family use.  I have been working out in the basement regularly with them.  Through last spring and summer, I had been doing a 5-mile run once a week, and doing a wide assortment of other intense training activities with my kids from April until the cold of winter set in.  Then we started doing all of the training in the basement.  We use workout videos and several routines that I put together.  Training consisted of sprinting, double-leg bounding up a set of grandstands, a wide variety of body-weight exercises and training (before we had our dumbbells), etc etc.  So, I was very active and continue to be that way.  I don't think lowering my activity level will benefit be in my situation, but then again, I'm not a doctor in this field.  I definitely feel best overall when I am doing some intense exercise everyday, or just about everyday.  Once again, the back pain is associated more with sleeping / resting / immobility.  I find that when I workout and use those lower back muscles (when it is through training exercises, lifting, or chopping wood), they tire and start burning and fatigue very quickly.  It's the same type of pain/pressure/weakness I feel when I wake up at 5 or 6am in agony - maybe just not as intense.

Thanks for taking the time to read this long rant!

My severe back pain has been going on since I first started this thread in February.   About a week ago my back got worse and worse daily over 3-4 days.  The pain was in my left lower back and became excruciating at times.  It appeared to be where the sacroiliac joint is.  My chiro friend said that it could be a strain of the Sacroiliac joint. The pain got to the point of complete agony so a doctor let me get a Toradol shot at the ER.  It helped with some relief but there was still a lot of pain. I saw my Chiro friend today and after examining me, and based on my symptoms, he really believes that my physical issues could well be systematic - and not mechanical.  This might also explain why my shoulder has been causing me extreme pain for the past few weeks.  The sports med doctor I saw could only suggest it might be impingement.  Also, every now and then I get other strange injuries / flare ups.  For example, every once in a while, I get pain on the top of my foot (under where my shoe laces are located).  It flares up, seems really painful on the bones, then goes away.  Arthritis maybe?  These unexplainable flare ups could be related to my IBD, my surgery, the roughly 8 years of Prednisone I took prior to my surgery, or even possibly the Entyvio infusions I have been getting, or previously the Remicade I was on.  It probably wasn't Humira because very little ever got into my bloodstream.

I did have some bloodwork to look into these possibilities a few weeks ago and it came up negative.  I need to try again, but this time with my GI instead of my family doctor.

If anyone can relate to these issues, please let me know.  It has been a frustrating time.  The reason I think I have these painful physical occurrences could well be systematic is because, as I said, is because these injuries were probably not caused my something I did but rather they seem to come and go in a very strange way.  And it also seems that the long term lower back pain I have been suffering from has not shown up with the same level of seriousness on the MRIs I've had done.

I really believe you need to be evaluated by a rheumatologist. I have enteropathic arthritis, which is one of the spondyloarthopathies related to AS. I am HLA-B27 negative. It is not strictly diagnostic, as about a third of the IBD cases with spondylitis do not have it.

Jan

I was given Entevio up on 2016. It did not work for me either. My GI and infusion nurse were shocked. Apparently, it's supposed to be the miracle drug for UC but not but not for me.

I remember I was tested for HLA-B27 gene, which triggers both IBD and ankylosing spondylitis. Lower back pain is the first thing they usually ask for ankylosing spondylitis.

OK, I have been on 360mg of Codeine for the past 20 years to keep my bowel movements from getting out of hand.  It works but I have been dependent on the stuff since then.  About 5 years ago, I tried Humira.  It never did anything for me and then bloodwork determined that most of it wasn't even getting into my bloodstream.  Antibodies is what I was told...  Then a couple years later I tried Remicade for a few months.  No better.  Now I am on Entyvio.  Hard to say if it's helping keep my bowel movements in check.  Usually I am in the 6-9 per day zone. 

OK, I started this thread about my back and continued it when I had excruciating back pain a few days ago.  This week my back has been its old self.  Very stiff and sore in the morning.  I wake up in the wee hours of the morning with horrible pressure pain forcing me to change sleeping positions.  Overall, it has been way more tolerable than it was a few days ago.

But this afternoon, I started getting extreme shoulder pain.  Sudden acute agonizing right shoulder pain that felt like it was piercing through my deltoid.  The more this makes me think it is a systematic problem and not a mechanical injury.  Could it be the Entyvio???  It seems that this stuff only started since I have been on it.  Since I switched from infusions every second month to every month, these issues seem to be more pronounced.  How about those years I was on Prednisone dating back to the 1990s.  I went hard for about 7-8 years on the stuff.  Could that be catching up to me?

I need some answers.  I am scheduled to see my GI next week about my back issues etc.  I feel like my body is breaking down at times unpredictably and it's scary.  I'm in pretty good shape for a 53-year old.  I'm not overweight and consider myself athletic.  I'm quite active, although have been restricting my physical activities lately mainly to walking because of these physical issues.

Can anyone relate to these kinds of problems with Entyvio?

Hate to be banging on the same drum, but….

Yes, with my enteropathic arthritis I get shoulder pain, rotator cuff to be specific. Also, my elbows, knees, wrists, and Achilles tendons. Not all at once, but here and there, moving around like a random gremlin. Entivio may not be effective for AS, as it targets the gut. But, generally they say you need to treat the underlying IBD to also treat the spondyloarthropathy.

So the big question is whether you are experiencing a side effect of Entivio or is the Entivio not treating your underlying inflammatory disease? It is seldom as simple as cause and effect. And yes, you may have joint damage from long term prednisone use (avascular necrosis). But generally that does not come and go. It just gets worse.

Jan

Capper i am younger then you and I get a lot of the same problems (31 to be exact) I am always getting tendonitis, and now it looks like I'm beginning to get carpal tunnel, and my back problems that I have had a long time. I was only on prednisone for 3 years, so I don't think for me its prednisone but most likely my ibd attacking me in other places because my bowel where it use to attack is gone. Unfortunately in all the years I have had back problems I get told I'm to young and doctors won't do anything about it, and as the years go on its just getting worse. This past winter was the most brutal I was constantly stiff and like u when ever I wake up my back hurts and I have to get up move around and then I can go back to sleep. If I carry anything too heavy my back is out for a few days and its all lower back and my chiropractor said its all inflammation.

And to add im not on any medication haven't been since 2004.

I wish you all the best

Rebecca

I managed to get a bone scan done last week and I have a follow-up with a well-known Rheumatologist on Monday.  And of course, all of my nasty back pain seems to have settled down over the past 2-3 days! 

Please chime in and tell me I am right or wrong but the symptoms I have been having with my lower back and at time Sacroiliac joint seem to without any question 'flare up' at times and then become less of an issue at other times.  It doesn't seem like a normal injury or issue.  It seems more like my IBD. 

I guess I could find out more when I visit the Rheumatologist this Monday.

@capper posted:

I managed to get a bone scan done last week and I have a follow-up with a well-known Rheumatologist on Monday.  And of course, all of my nasty back pain seems to have settled down over the past 2-3 days!

Please chime in and tell me I am right or wrong but the symptoms I have been having with my lower back and at time Sacroiliac joint seem to without any question 'flare up' at times and then become less of an issue at other times.  It doesn't seem like a normal injury or issue.  It seems more like my IBD.

I guess I could find out more when I visit the Rheumatologist this Monday.

Let us know how it goes hon, in the mean time do you think you can stretch to help the pain or no?

Capper, that was my experience completely. I putzed around with thinking I had a strain or was just plain being a baby or crazy. When I contacted my primary MD about it, he suggested a rheumatology referral to sort it out. Sure enough, by the time I saw the rheumy, I was feeling pretty decent. But the difference was in the complete history she took from me and the physical exam. Never before had anyone actually measured how much my vertebrae separated when I bent over. She ran a bunch of screening tests (which were negative), and a lumbosacral MRI (also negative).

Still, based on my symptoms and medical history she was able to diagnose enteropathic arthritis with enthesitis (inflammation of the tendon insertions to the bone). Enthesitis does not show up on x-rays, but is quite painful. She immediately prescribed biologics.

Jan

Hey LOEC, unfortunately stretching doesn't do much as the pain and discomfort seems to happen on its own agenda!  Strangely, there was a 4-5 days span recently when I experienced as little discomfort and pain that I have had to deal with in a long long time!  The fact that this took place the week before visiting the doctor was not surprising!  A little 3-day car trip with my daughter seemed to put an end to that!  Lots of driving and sleeping on an air mattress in a tent one night and on a friend's sofa the next probably wasn't the best medicine! 

So I had my appointment yesterday.  My understanding is that the doctor I saw is not a Rheumatologist but rather an Internal Medicine specialist.  However, he apparently has a very good background and knowledge in the field of Rheumatology.  He examined me, asked me several questions, and requested copies of my lower back MRIs from 2014 and 2020. 

First he said that my bone scan was negative but he believes that I have Enteropathic Arthritis.  He requested bloodwork, a urine test, x-rays, and a visit to a dermatologist.  He noted that one of my feet looked like there was a problem.  I thought it was just dry skin although he thinks that its condition and discoloration looks to be problematic.  So I went to get bloodwork done today.  They took at least 15 vials of blood!  I gave them a urine sample and then I had x-rays taken of my back and hips, chest, and feet.  I am supposed to call back for results in a few days.

That's about everything at the moment...

@capper posted:

Hey LOEC, unfortunately stretching doesn't do much as the pain and discomfort seems to happen on its own agenda!  Strangely, there was a 4-5 days span recently when I experienced as little discomfort and pain that I have had to deal with in a long long time!  The fact that this took place the week before visiting the doctor was not surprising!  A little 3-day car trip with my daughter seemed to put an end to that!  Lots of driving and sleeping on an air mattress in a tent one night and on a friend's sofa the next probably wasn't the best medicine!

So I had my appointment yesterday.  My understanding is that the doctor I saw is not a Rheumatologist but rather an Internal Medicine specialist.  However, he apparently has a very good background and knowledge in the field of Rheumatology.  He examined me, asked me several questions, and requested copies of my lower back MRIs from 2014 and 2020.

First he said that my bone scan was negative but he believes that I have Enteropathic Arthritis.  He requested bloodwork, a urine test, x-rays, and a visit to a dermatologist.  He noted that one of my feet looked like there was a problem.  I thought it was just dry skin although he thinks that its condition and discoloration looks to be problematic.  So I went to get bloodwork done today.  They took at least 15 vials of blood!  I gave them a urine sample and then I had x-rays taken of my back and hips, chest, and feet.  I am supposed to call back for results in a few days.

That's about everything at the moment...

15 vials of blood??!?!?! DAMN!!! Okay, let me know how everything goes. Sorry you are suffering hon

Capper, that sounds like you got a thorough work up. A really good MD, perhaps an osteopath, could be astute enough to diagnose. Being board certified is not the be all and end all. All the labs and x-rays will not confirm or rule out enteropathic arthritis, but they can rule out other causes of your pain.

My enthesitis is particularly random. This past week I developed constant pain in my ribs (sort of like a mild kick by a mule). It had been years since this happened. But, yeah, part of the syndrome and totally weird. I just had an infusion of Inflectra yesterday, and already I am feeling better!

Jan

Well, my bone scan, x-rays, and bloodwork all came back.  It seems that the bone scan and x-rays didn't detect any problems.  The only thing that turned up in my bloodwork was that my Uric Acid level was above the normal range. The top of the normal range is 420 and mine was 449.  As a result, the doctor I was referred to thinks that it is possible I could have Gout.  However, I don't think my symptoms are akin to Gout.  At least I don't think most of them are.

So he suggested that I follow up with my family doctor.  I feel like I am back to where I was before with no answers and no relief in site.  The way the healthcare system works in Canada, I can't even get an appointment to speak with my family doctor on the phone until September 7...   Now what do I do???