Author Topic: Excruciating lower back pain normal?  (Read 3556 times)


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Excruciating lower back pain normal?
« on: April 21, 2014, 07:30:22 AM »
Hello all,

I was just diagnosed with Sjogren's last week and found this forum while doing research on the disease. I haven't even been officially diagnosed yet, but my blood results came in the mail this week saying I tested positive for SSB and ANAChoice screen along with a note for me to see a rheumatologist. I tested negative for RF.

Many things make sense when I research the disease, except for my back pain, which is why I've been persistently going to different doctors since December. I have been seeing about a doctor a week, different types of specialists. Family practitioners, pain management doctors, neurologists, gynecologists, infectious disease specialists. It was actually the infectious disease doctor that first thought of testing my blood for diseases.

My first blood results came back with an abnormally low white blood count. I told them I had the same thing when I went to have a physical in November. It was at 3 in November and now in April it was at 2.9. They did a follow-up test which is when I tested positive for SSB and ANA. I had a 20-day untreated strep infection in late October, so I had written off the November low WBC as a result from that.

As for SS symptoms. I have a very dry mouth, I drink water constantly. I can't even leave the house without a bottle of water. I haven't been bothered with dry eyes. But every now and then I wake up in the morning unable to open my eyes. It feels like the eyelids have grown into my eyeballs. When I'm finally able to pry my eyes open they will be sore for up to 4 hours after. This never happens several days in a row, very sporadically, so I figured it was because of the Lasik I had done in 2009.

I have extremely dry skin. My hands look like they belong to someone much older than me. My face and legs are extremely dry too. My boyfriend calls me a lizard because I have so scaly skin. But again, this isn't something new for me.

Brain fogs, I have them all the time. I always read on bed before sleeping, and lately I'm struggling actually digesting what I'm reading. I can read an entire chapter and realize I haven't actually read what I just read, if that makes sense. Speaking of digestion, I only have bowel movements maybe once a week, is this normal too? I don't feel constipated, I'm happy with my once a week!

But those symptoms don't really bother me. What's bothering me is my lower back pain. I have never in my 32 year life felt anything so painful. The pain is located where my buttcrack starts and it feels like it's wrapped out to both sides. It gets way worse in the evening. There is luckily no pain with movement, just a strong ache that is always there. I feel like doctors don't take my pain seriously since there's no pain when I move the spine and SI joint. I have been on Percocet 5/325 since December, but it fails to kill the pain completely.

I also started having muscle twitches about a week after my strep throat went away in November. Not just the normal eyelid twitching, but every single muscle in my body have been twitching by now. Even muscles I didn't know I had. Every single minute of my day I have muscle twitches. They are usually not present at night. But last week I woke up in the middle of the night and my left quad muscle started twitching uncontrollably. Very strong twitches too, just not painful. And every morning I wake up to stiff. Way too stiff for a 32 year old.

Lately, I've also been getting rashes. The first rash was right on top of the back pain. It's itchy but doesn't bother me too much. Lately, I've also been getting a rash on my left thigh. In February, I got three giant bumps on my left hand, located in between the middle finger and index finger, and going up my middle finger. These were itching bad and eventually dried out, leaving a painfully wound where the skin cracked open. I didn't connect this with all the other things that had been bothering me since December so I didn't mention this to the doctor, it was kinda embarrassing since it looked so disgusting.

So my question is if anyone can relate to the issues I have had, especially the lower back pain.

We are also planning on trying to become pregnant this year and start a family, have anyone had any challenges with pregnancies with SS? I see there's a rare side effect where the baby's heart can be affected? Should I take a gene test before becoming pregnant?


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Re: Excruciating lower back pain normal?
« Reply #1 on: April 21, 2014, 07:30:53 AM »
...(continued because I exceeded 5000 characters)

I'm also struggling with extreme fatigue. I have always been struggling with fatigue, but now it seems to hit me like a truck. I can be fine and alert one moment and the next I just HAVE to sleep! I'm lucky to be working from home but I'm worried how this is gonna be when I have small kids to take care of. Right now I'm taking ephedrine for the fatigue, but I realize I can't take that forever, what do you guys do to cope with the fatigue?

Do you think the strep infection in October could have triggered SSB? I found it odd that all these symptoms came right after a strep throat...


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Re: Excruciating lower back pain normal?
« Reply #2 on: April 21, 2014, 08:51:30 AM »

I am also having extreme back pain and there may be a good chance that I have kidney issues. My white count typically stays in the 3 range...but in the last week has been 1.99.
I have other urinary issues as well (going to the bathroom 26 times in a 24 hour period), etc.

But one can also have other back issues with Sjogren's. It is not atypical for someone to have Spinal Stenosis. Constipating can also be a typical symptom with Sjogren's. Basically, what you have
described, sounds very much like Sjogren's.

You mentioned being diagnosed...are you being treated? Plaquenil is the gold standard for treatment. Some people who take Plaquenil do get some relief from some of the fatigue. I am not one of them, unfortunately. Do you have a good Rheumatologist who is well versed about Sjogren's?

Take Care.

Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;


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Re: Excruciating lower back pain normal?
« Reply #3 on: April 21, 2014, 08:55:12 AM »
Oh dearest Pink, you are having no fun at all.

I have only one thought about the back pain.  Remember we aren't doctors, and I'm just relating to what I've experienced.  I have Interstitial Cystitis (inflammation of the bladder lining) which shows up in about 50% of those with Sjogren's, and vice versa (50% of those with IC show up with Sjogren's.)

When my IC flares, and it sounds like you are in a flare big time, I have excruciating very lower back pain.
Heat helps.

My IC was diagnosed after I had chronic UTIs, as the inflamed lining is a perfect spot for infections to start.

I take D-Mannose which is as effective against infections as an antibiotic, and isn't an antibiotic and is OTC.

IC can be disabling in pain, really.

About getting pregnant:  Of course I can't advise, but I wouldn't worry about it myself.  Take good care of yourself, talk about your conditions with all your doctors (keep them up date).

Begin keeping a diary of your symptoms, your habits (bowel, eating, etc) so you can track how you feel day to day.  You'd be amazed how helpful this is.

Get a good system for tracking your meds, your doctors, your test results.  There are several on-line systems, and I use Excel documents to keep track of some things.  And fortunately I'm in the Duke medical system here in NC and everything that is done by Duke doctors is in the data base.

Sjogren's can be a reasonably manageable condition.  Only those of us in the small percentage with a serious set of symptoms, and or those of us with other conditions (autoimmune and immune mediated conditions like to hang out together) tend to post consistently on line.

You will get lots of feed back, I'm sure.

Everyone here has good stuff to say, take what you need, and leave the rest.

Hugs, and welcome Pinkfish,

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Re: Excruciating lower back pain normal?
« Reply #4 on: April 21, 2014, 09:08:02 AM »
Thank you for your reply, SjoDry.  Sorry to hear about your kidney issues. Hope it turns out okay.

I haven't been officially diagnosed yet, all I have is the blood test results that say I'm positive for SSB and ANAChoice. I just set up an appointment with a rheumatologist for Friday so I'm hoping I can start some treatment then, and get off the narcotic painkillers. I'm terrified of getting addicted, but the pain trumps the long term effects at this point.

From my doctor's website: "He participates in the annual conferences here as well as abroad for continuing medical education of the latest clinical developments and treatments in Internal Medicine and Rheumatology. He is also an investigator and lecturer in clinical drug trials for various pharmaceutical companies. Our practice is in the field of Lupus, Wegners Disease, Lyme's Disease and Sjorojens Disease." 

So I'm excited to see what he has to say because he sounds good and has very good reviews!

The twitching muscles though? Is that normal? Going on 6 months with twitches now. And is it possible for me to have RA as well when I tested negative for RF, or is the back pain with SS really that severe? I had an MRI to look for herniated disc back in February. It showed a disc bulge at L4-L5 and facet joint arthritis in L5-S1, but my pain feels like it is even lower than that. Oh, and my SI joint is either swollen or "growing". I know it sounds weird, but I feel really strange bones along the buttcrack now that wasn't there before the pain started. Almost as if the tailbone have straightened out instead of being curled inwards like it is supposed to be...


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Re: Excruciating lower back pain normal?
« Reply #5 on: April 21, 2014, 09:19:46 AM »

I have actually not heard about IC, but just reading quick about it I should definitely check that out. Right before the back started hurting, I was having two weeks of really strange "female-issues".

December 1st (I remember the date because I went to Dolphins @Jets) I had really dark spotting, it was almost black. This was 19 days into my cycle and it lasted for 12 days. The Saturday after this happened, I had really bad stomach cramps, it felt like contractions. Having had a miscarriage before, I took a pregnancy test to see if I was having a miscarriage, but it came back negative. The pain was very similar to the pain with the miscarriage, just 10 times worse. I had to take a dog I was watching to the dog park, and every bump on the road felt like a stab to my stomach. I went to the urgent care clinic who did a pelvic exam, suspected a cyst, and prescribed me to get an ultrasound. The ultrasound showed a small cyst on my left side, opposite of the side the pain was. I was told cysts are normal and probably isn't what was causing the pain. Two weeks after the black spotting stopped, my back pain started, but I kept having stabbing pain on my right ovary(?) for the first month of my back pain. I haven't really mentioned this to the other doctors I've been seeing, because I didn't think it was related.

And that's a good idea about the diary. I actually started one a few weeks ago, just keeping a word file with dates for when things happened and the doctors I've been seeing and meds I've been prescribed. I usually bring this to the doctors I'm seeing, but none of them really cares to look at it, which I think is strange.

Before my strep throat in October, I was never sick, never had any pain. I would get maybe one cold a year and that was it. I worked out at the gym lifting weights 4 times a week, 2 hours at a time. I quit this after I got the back pain, worried that it was the lifting that caused it. So I think it's very strange that I all of a sudden come down with so many things with such a broad specter.


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Re: Excruciating lower back pain normal?
« Reply #6 on: April 21, 2014, 09:26:50 AM »

You've gotten some good ideas so far as to what could be causing low back pain. Now my turn.

Way back in the day (1991 thereabouts), out of nowhere I developed excrutiating low back pain. This went on for about a month. I was bounced back and forth to this specialist and that specialist, including MRI of spine, all manner of tests including ultrasound by Gyno. All that turned up was an "insignificant" (haha, turned out it was NOT insignificant at all) ovarian cyst. I'll save the rest of that story for another time.

But at that point, I already had a history of ovarian cysts that would rupture and for several days would have a lot of pain and they'd resolve on their own. Until that one...

But who on earth would have connected that a stupid ovarian cyst could cause such excrutiating low back pain?

Do log your symptoms, there's a lot of things that can cause low back pain. For one thing, part of my SJS in me has caused chronic constipation. If I divert off of what keeps things moving along, wham I am hit with very back low back pain along with the dry bum.

As to pregnancy, I think recently that question has come up on the boards. I don't recall which member(s) brought that issue up recently.

You may want to start a separate thread on just that question (pregnancy and SJS).

Skin rashes - perhaps a dermatologist is in order? Yes, I know those can be embarrassing to bring up with a doctor. Still, a doctor should examine that rash and see if a derma referral is merited.

I type too slow... RE:

I had an MRI to look for herniated disc back in February. It showed a disc bulge at L4-L5 and facet joint arthritis in L5-S1, but my pain feels like it is even lower than that. Oh, and my SI joint is either swollen or "growing". I know it sounds weird, but I feel really strange bones along the buttcrack now that wasn't there before the pain started. Almost as if the tailbone have straightened out instead of being curled inwards like it is supposed to be...

That alone, especially if there are other issues going on internally, is a biggee for low back pain. My L5-S1 vertebrae are on the edge of the cliff and oh yes, when it flares it bites. I also have facet joint arthropathy and bulging disks throughout lumbar spine. Did your doc refer you to spine specialist on that? Or did you have any physical therapy to address that?

Hugs and please do keep us posted.


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Re: Excruciating lower back pain normal?
« Reply #7 on: May 05, 2019, 11:56:42 PM »
I am also a back pain patient. I have dome MRI and found a little disk bulge problem on my lower back. The doctor told me it's simple and gave me a few back exercises. After doing that exercise, I feel good and it reduces my pain. Exercise is really the most effective way to relieve your back pain. I found a helpful infographic article which shares over 30 causes of upper and lower back pain and treatment here
« Last Edit: May 10, 2019, 10:38:46 PM by pamila55 »


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Re: Excruciating lower back pain normal?
« Reply #8 on: May 06, 2019, 04:51:01 PM »
You have a lot of issues that could be related to Sjogrens. The first thing I would advise is to use an OTC eye gel to prevent your eye from sticking together in the morning. I  would think that this is a Sjogrens dry eye issue. During the day you could use a liquid OTC eye drop for any dryness.

The back pain could be from the Sjogrens. With autoimmune diseases a person can have a lot of inflammatory joint issues and the back can be one place that this happens. An MRI would be good to get a better diagnosis...check for discs, etc. Also, I would try to get the back issues and gyne issues solved before getting pregnant. Being pregnant is hard on the lower pelvis and causes pressure on the lower spine also so it would be good to cheek this out better.

You may want to see neurology to rule out any issues with the spasms, etc . So hard to label that unless more assessment is done by the doc. Now that you have a probably diagnosis you may find that seeing fewer doctors will happen. You will need to keep a journal of your issues and see the doctors that treat the more common problems. With chronic disease we can meet ourselves coming and going sometimes ands it is easier on us to try and schedule appts less often. Sometimes we can have some miserable health issues and they will go away before we can get to our appointment. Good luck. Irish


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Re: Excruciating lower back pain normal?
« Reply #9 on: May 07, 2019, 03:19:28 AM »
So sorry you're having all these problems, Pinkfish.   I can't comment on the back pain, that needs to be properly investigated as it could be down to several different issues.   But I just wanted to second what Irish says about your eyes.   You shouldn't be prising them open in the morning, that can damage the surface of the eye.  I get a special lubricating cream from my doctor, you need something like that at night.   And if your eyelids are stuck together in the morning, try very gently pushing them up over the rounded surface of the eyeball, rather than doing anything which drags the eyelid away from the eyeball (hope that makes sense).   
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.


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Re: Excruciating lower back pain normal?
« Reply #10 on: May 16, 2019, 01:24:05 PM »
Pinkfish, I encourage you to take photos of your rashes and share them with your doctors. That's how I finally got on the long road to having a diagnosis. I showed my neurologist a photo of a rash, he sent me to a rheumatologist who diagnosed me based on that, symptoms and blood work (back then my bloodwork was positive for SSB and ANA).

I continue to share photos of rashes or swelling with my docs as things arise. This is how I have in some cases received treatment that I needed to put an end to a flare.

As noted by others, low back pain can have many causes from structural to issues with ovaries to problems with your colon. The pain radiating to your hips might be what my neurologist said is called radiculopathy, that's when the pain travels from the epicenter out around the sides of the body. I have even had it in my mid back and then felt like I couldn't expand my body to breath, it all turned out to be from my spine which it turns out is out of kilter from top to bottom.

Here's hoping this helps and that you find some relief soon!
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Re: Excruciating lower back pain normal?
« Reply #11 on: May 17, 2019, 01:34:18 AM »

If you have been on this forum for a bit, you may know me as an odd duck. The yoga master at the pain clinic I went to years ago, suggested what I believe is a Kegel exercise for women and as a man it is an approximation. Do only one once to three times a day to begin with until the back muscles get stronger. After you work up three times per day, then do two reps. It is a slow process but it does help.
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Re: Excruciating lower back pain normal?
« Reply #12 on: May 17, 2019, 02:38:34 AM »
As usual I'm glad to see members supporting and assisting each other, but please note that the original posting from pinkfish was 5 years ago, and that person is no longer a member, at least under that name.

The current question was posted by pamila55 and I'm sure your responses are helping her and appreciated, but would be more appropriately addressed to her.
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