First time posting after reading for the last year or so.
Does anyone else have severe spinal pain? Pain gets so severe that I can only walk about a block and the severity of the pain essentially turns my legs off. Pain is always around and gets worse with any activity. Only things that help are pain medications, ice, and staying in a reclined position with lots of pillows.
My rheumatologist isn't sure if I have seronegative non-radiographic axial spondylitis (early stage of Ankylosing Spondlyosis) or if my pain is from Sjogren's attacking my spinal nerves.
Has anyone else experienced anything similar? Had any luck with treatments?
I've tried just about everything pain management wise as the back and leg pain was the first symptom four years ago before dryness set in and we figured out it wasn't medications drying me out so badly.
I tried plaquenil and now on month 6 of methotrexate.
Let me know if anyone else has similar pain and if you've found anything to help.
I do not know that I can be of much help. I do not believe that mine is from Sjogren's but I could be wrong. I get tired walking a block. I have circulation problems in my legs, cardiac artery disease and congestive heart failure. I have multiple other health challenges that I deal with.
Sjogren's is a gateway illness that opens the door for many other ailments.
I will piggy back on what Joe said. My severe pain cannot be traced to anything particular so the doctor says its the sjogrens and peripheral neuropathy. My lower spine hurts so bad that it radiates to the hips and down the legs. Sometimes it looks pretty bad for me to walk but I just look awkward and do it. Whenever I try to do an activity I pay the price big time. That is what I have noticed lately. Right now I try to push and do some things that I enjoy because there are days when all I can do is ball myself up and cry and stay put. I am hoping to have a candid conversation with my rheumatologist this week. I don't know if PT, OT, and other therapies can help but I am willing to try because I get when we all say we just need to lie down in one place don't move and pray for the pain to lessen.
Peace and Blessings,
Angel dancer
I too have severe back pain.
Here are the possibilities:
Pain due to peripheral neuropathy
Pain due to regular arthritis or disc disease
Your radiating pain may be due to a disc herniation
I also encourage you to get tests for Polymyositis (a blood test called CPK)
I suggest a Spine Orthopedist and referral to a Pain Specialist
Welcome Kristian,
You don't give your age. I believe mine is age related. I've had one back surgery: cervical lamination. About age 50.
About 5 years or so ago, I began to realize I couldn't stand for long periods. "Long" meant 5 to 10 minutes. Now...I can stand closer to 15 to 20 minutes. I'm 75. I can walk a few blocks without pain as long as I am not stopping to peruse something.
I have osteoarthritis NOT RA. Rheumy doesn't believe I'll suffer RA. In Feb this year I had a "hip" pain attack like I'd never felt. When I suffered neck pain, it came on gradually.Crippled me over a period of years. After PT, traction, neurosurgery appts (with 3 different neuros)...I waited a year before my surgery. That pain didn't stop me in my tracks. This pain resulted in my barely being able to walk. Over two months later I found myself having a cortisone injection in one hip. (5 doctors later I might add). Bottom line: pain came from my back. The hip injection worked.
I have spondylolisthesis. Not just an old person's problem yet common among old people. It's where two vertebrae come together without a disc. It happens as one vertebra slips to one side. To date, I've lost 1 1/2 inches. Realized I limp to my right as it's the shorter side. That's where not ONE pair of vertebrae have "slipped" together. I have two pair.
One solution is pain pills. I was given Tylenol #3. (short term) What HAS helped is PT. It is hard. The result is enormous. I knew I changed seating options often, and I realized I woke up in the night with my hip hurting as it did when I went to bed.
The outcomes of the PT follow: back ache follows any physical activity I take on after about 10 to 15 minutes-- It WAS after about 5 to 6 minutes; while sitting or driving, there is no pain--was constant...varying degrees such as mild to severe; and I can walk about 1/2 mile now before I have a twinge of anything--it was about 40 to 50 feet. The last favorable outcome of the exercises is they have gotten easier. THAT is the real payoff. Over this week-end I realized I could easily do these exercises for the rest of my life. I mean--I'm old, and if I can do them now...I should be able to continue.
In addition to the above, I was diagnosed with Coxarthrosis in both hips. When I was sent to have the hip injection, one dr said to try it, another said it's in my back. AFTER I had a successful outcome, returned to the back ortho (YES>..I had to see a hip ortho and a back ortho) and was told when I needed another injection how to go about getting it ordered----and the next time it would be in my back...not my hip. I argued as the hip injection was successful. I was assured the back was generating much more pain...and relief from the arthritic hip pain was the tip of the iceberg. I have to trust them. I did make sure I could go back for a hip injection if the back injection didn't help me. I don't mind saying I was looked at like I didn't believe the doctor. And I didn't/don't. I mean, why mess with success.
Bottom line for me: cortisone injections (done through fluoroscopy) + PT. If you are young, the PT can set you off on a lifetime of great physical habits so that you don't end up like me. Bad part to get to what I advise is this: It took me over two full months to see all the physicians they required (no one seemed to want to make a decision on what was wrong). At one point I spent two weeks flat---on a sofa or in my bed. By the time I got to my 2nd, 3rd, 4th, etc doctor I was using a cane...and needed a motorized cart. When it was all over, I had to scratch my head over why that wasn't ordered first. Of course I had to have Xrays ordered by the hip ortho, Xrays ordered by the back ortho, MRI ordered by one of them..and on and on.
That took place in Feb, March, and had the injection on 14 April. By 10 May I was on a trip w' family which required me to walk all over...and was able to---no cane. Miraculous.
Another aside: One of the first things tried was Celebrex (Rxed by PCP). Then I had to stop and see my rheumy as I am on low dose prednisone. Had to see if that was okay to take. THEN the orthos, THEN the radiologist who administered. It's an interminable time from the time you CALL till you actually have an appt.
I know you are a newbie..and don't mean to scare you. Remember: if you are young you have nothing like I am describing. Whatever it is, PT and religious exercises will help. I know as it put off my cervical surgery at about age 50 for several years.
Best luck to you...and you don't say if you are taking SjS cocktail of meds. I'd add extra strength Tylenol. I say that as I have had an NSAID ulcer...and can't take Motrin and Advil, etc. Tylenol doesn't work as well...but just what I believe is safe for the long haul.
c3
Kristin, First I am sorry, I've not been quite as bad as you, but do know the pain that can come from walking.
My journey to a Sjogren's diagnosis started with migraines and significant neck pain (so severe I landed in the ER more than once). Long number of years, much testing, etc. showed that I have degenerative disc disease, spondolosis, bulging discs, and have had pinched nerves as well. This is the case from the top of my spine to the bottom.
You may be surprised to learn that a neurologist is going to potentially be a life saver regarding your spine. I never realized that neurologists treat spines and I've found a gem who has helped me get my life back. I do have to take meds for nerve pain, but I am able to walk now for fairly long distances and even started going to a gym earlier this year.
Be persistent with seeking MRIs of your spine, that is one of the best ways to find out what is really going on. It may be difficult because insurance might not like so much testing and MRIs are expensive, but they were worth it in my case.
Best wishes to you!
Thank you for the responses about pain with Sj?gren's.
On some of the questions.
I am 37 and this has been going on 4.5 years
My pain meds are Opana ER, OxyContin, tramadol, temazepam, and gabapentin.
Other meds are synthyroid, salagen, methotrexate, folic acid, vivlodex(small molecule anti-inflammatory), arimidex, and Androgel. Plus prednisone occasionally.
Also take vitamin D, omega 3-6-7-9's, stinging nettle root, primrose oil, and turmeric elixir.
I have been to 30-40 doctors about this and started off extremely physically fit and heavily into working out.
Generally have been stuck in a cycle of: orthopedist sends to neurology, which sends me to rheumatology, which sends me back to the ortho.
I started off doing physical therapy and stretches daily only to continue to get worse over time. I've had trigger point injections, facet joint injections, and epidural steroid injections. Every inch of my spine and brain imaged from xray to CT myleograms. Medical team is out of ideas except the rheumy.
Went to the rheumatologist today and he said he definitely thinks it is axial spondylitis with the Sjogren's making it a lot worse; said we'll keep trying dmards to biologics, etc.. Until we find one that sticks.
I was just curious If anyone else was in the same boat pain wise, not taking into account the various degrees of Sjogren's all of us have. It seemed as though most people were dealing with some pain on the board and was very curious if it was more Sjogren's or something else.
Thanks for the responses and the help.