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Reply to "I'm Back about Back"

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!

Last edited by capper
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