Dr. Hive: chronic pain/nerve pain/spine/auto immune?

[momto3innc]

While I read here a lot, I don't post a ton. I am always impressed with the collective wisdom found here as it relates to medical issues. I am asking for your help with that today for my almost 17yo dd. I truly would appreciate any insight you have from your experiences with your families.

I'll try to make this somewhat short, but clear.

December 2021: My dd (then 14) has spinal fusion surgery for a fairly significant S-curve that had not responded to bracing and was continuing to worsen. Surgery was considered successful.

June 2022-October 2023: She resumed normal activity as instructed by her surgeon (cross country, track, theater, babysitting, etc...). Picture a pretty active, normal high school student. Through this, she continued to have back pain, but she was very functional. By the end of this time, the pain was continuing enough that she was pretty frustrated that it hadn't fully gone away, so we returned to her surgeon. However, there were no large issues with what she could do...it was just frustrating that the pain was continuing.

October 2023: Surgeon recommended PT, so she did that for 8 weeks. PT saw no changes and felt she needed more help since the pain was about the same as when she started. Referred her to pain management clinic. During this she finished cross country season and continued to be active.

February 2024-May 2024: Started pain management clinic (acupuncture, cupping, physical therapy, massage, psychologist, pain management doctor every other week). Also started duoxetine (Cymbalta) for pain.  By April pain was steadily increasing, definitely not decreasing and the pain seemed different (more nerve pain). She started missing school due to pain and greatly decreased activities.

May 2024: Started having radiating nerve pain through her body. We have seen a rapid decline since this time. Her gait is irregular and stiff, she is tiring super fast, and she basically hurts all the time. She also started having muscle spasms/pins and needles feelings mainly on the left side of her body. She has gone from being incredibly active to struggling up the stairs, barely making it through short errands, having to sit down at a choir performance, etc... It's a significant difference. She is never out of pain, struggling to sleep, etc... She does have some joint pain, but it’s not just joint pain. It’s basically global pain.

Saw both primary doc, pain management doc, and orthopedic surgeon again as all this started in May.

Pain management doc weaned her off duoxetine, suspended her from pain management since it seemed to be doing the opposite, and started her on gabapentin. We are supposed to see him again in a couple weeks. He's recommending an intensive month long pain management treatment that would basically be full time, every day. My dd is pretty opposed to this as she feels everything has gotten worse since starting this.

Surgeon ordered X-ray, MRI, and CT Scan to see if there were any issues from her surgery or anything in her spinal area. All looks clear. 

Primary ordered a ton of bloodwork, particularly inflammation markers. Blood work seemed fine. Both surgeon and primary referred her to neurology and rheumatology. 

Today: We saw neurologist. He does not think there are any neurologic issues, said he did not think any further testing is needed, and basically said we needed to stick with pain management.  

Wednesday: we will see rheumatologist. I'm wondering a lot about autoimmune issues, but I'm surprised the bloodwork would not show inflammation.

If you have made it this far...do you have any ideas of things we should be asking about? Does it make you think of anything your family has experienced? I think they're stuck in "pain can change over time, we need to learn to manage pain well". We know that can be true, but this is SUCH a change in her in such a short time. That's where I am stuck. I feel like there has to be a reason and I want to find that and not just assume we need to look at pain management and sort of accept the pain.  

Few last notes: we cannot think of any illnesses or injuries during this time. Outside of this, she's actually seemed pretty healthy all school year.  All our appointments are a fairly major children's hospital.

Thank you!!!

 

Edited June 4 by momto3innc

[Pawz4me]

24 minutes ago, momto3innc said:

 

Wednesday: we will see rheumatologist. I'm wondering a lot about autoimmune issues, but I'm surprised the bloodwork would not show inflammation.

It happens sometimes. I have seropositive RA but my inflammation markers (CRP and ESR) have always been in the normal range, even when I've had multiple swollen joints. My rheumatologists have said that it's not hugely unusual.

ETA: Has her thyroid been checked? If not the rheumy may do it (especially if you mention it). Since most thyroid issues are AI it kinda falls under their umbrella a bit. Low thyroid can cause global pain/achiness and stiffness.

And whenever I think of young adult + back issues + rheumatology my mind goes to ankylosing spondylitis. You might want to read up on that a bit and see if any of it seems to fit.

Edited June 3 by Pawz4me

[Arcadia]

59 minutes ago, momto3innc said:

I'm wondering a lot about autoimmune issues, but I'm surprised the bloodwork would not show inflammation.

My mom’s rheumatoid arthritis factor didn’t show positive until two years after diagnosis. With that level of nerve pain especially heavier on one side, has an echocardiogram also been done? One of my medication has blood clots as a more common side effect and heart issue as a rare side effect. I had a few echocardiograms because of that since I also have “pins and needles” issues very often and blood circulation issues are harder to narrow down. For what it’s worth, an asthma medication made me very nauseous and very tired, and it took months for the side effects to stop after stopping the medication. 

[Pawz4me]

7 minutes ago, Arcadia said:

My mom’s rheumatoid arthritis factor didn’t show positive until two years after diagnosis. 

Just as a clarification: Rheumatoid factor and anti-CCP are autoantibodies that are used in diagnosing seropositive RA, and sometimes other AI diseases. I think there's another autoantibody test that's used sometimes, too, but I can't remember the name of it off the top of my head. A person with autoantibodies would be diagnosed with a seropositive AI disease. A person w/o autoantibodies can still be diagnosed with seronegative AI disease, and a seronegative diagnosis can, like your mom, eventually change to seropositive.

The inflammation tests are c-reactive protein (CRP) and erythrocyte sedimentation rate (ESR). There may be other inflammation tests, but those are the ones I'm familiar with.

[momto3innc]

To (kind of) answer your questions.

She did have just her TSH tested and it was .7. They have not ran more extensive thyroid tests.

Other labs included CRP, ESR/sed rate, Ana screen/titer, epstein barr, mono, comprehensive metabolic, and CBC.

I had not considered an echocardiogram and I'll definitely keep that in mind.

Edited June 4 by momto3innc

[Arcadia]

I would also suggest a Vit D blood test as well as a comprehensive metabolic panel blood test. My oncologist wants me to have results on the higher end of “normal” range for Vit D and protein. I would see if the results of the basic metabolic test includes protein before asking for the CMP (https://medlineplus.gov/lab-tests/comprehensive-metabolic-panel-cmp/). 

[TravelingChris]

1 hour ago, Pawz4me said:

Just as a clarification: Rheumatoid factor and anti-CCP are autoantibodies that are used in diagnosing seropositive RA, and sometimes other AI diseases. I think there's another autoantibody test that's used sometimes, too, but I can't remember the name of it off the top of my head. A person with autoantibodies would be diagnosed with a seropositive AI disease. A person w/o autoantibodies can still be diagnosed with seronegative AI disease, and a seronegative diagnosis can, like your mom, eventually change to seropositive.

The inflammation tests are c-reactive protein (CRP) and erythrocyte sedimentation rate (ESR). There may be other inflammation tests, but those are the ones I'm familiar with.

Yes, I have never been positive for rheumatoid factor but was positive for the more diagnostic anti-CCP.  I also have the highest Lupus diagnostic factor. Plus I have AS and Sjogren's and Asthma too.

[Jaybee]

Okay, so this may sound weird, but it is what I immediately thought of. Quite a few years ago, the mother of a friend I grew up with had knee replacement surgery. She gradually developed all kinds of horrible symptoms, and it was a fight to get them taken seriously and explored. Short story is that she had an allergy to a metal used in the replacement piece. Once that was figured out and it was removed and replaced with something else, she started improving quickly. I don't know what all is involved in spinal fusion, but I wanted to mention this. I am not real familiar with the whole story on my friend's mom, because I was living far away at the time, but was advised to make sure that before I have any kind of surgery of this type, I should have allergy testing done on the components. As I do have a metal allergy and not the usual ones, I have kept that info tucked away in case I need it in the future.

[momto3innc]

1 hour ago, Arcadia said:

I would also suggest a Vit D blood test as well as a comprehensive metabolic panel blood test. My oncologist wants me to have results on the higher end of “normal” range for Vit D and protein. I would see if the results of the basic metabolic test includes protein before asking for the CMP (https://medlineplus.gov/lab-tests/comprehensive-metabolic-panel-cmp/). 

Actually, I looked again and it was a comprehensive metabolic panel that was run last week, not the basic.

Vitamin D was something I was planning to ask for--that's a good reminder. I'm making a list of all my questions/tests I'd like to ask about.

[momto3innc]

39 minutes ago, Jaybee said:

Okay, so this may sound weird, but it is what I immediately thought of. Quite a few years ago, the mother of a friend I grew up with had knee replacement surgery. She gradually developed all kinds of horrible symptoms, and it was a fight to get them taken seriously and explored. Short story is that she had an allergy to a metal used in the replacement piece. Once that was figured out and it was removed and replaced with something else, she started improving quickly. I don't know what all is involved in spinal fusion, but I wanted to mention this. I am not real familiar with the whole story on my friend's mom, because I was living far away at the time, but was advised to make sure that before I have any kind of surgery of this type, I should have allergy testing done on the components. As I do have a metal allergy and not the usual ones, I have kept that info tucked away in case I need it in the future.

That is probably one of our worst fears. We did talk about it with her surgeon. She has two titanium rods along with a large number of screws. The surgeon has removed two of these over the course of his career (one for long term infection and one for a possible allergy). The risks/side effects from removal are incredibly high. We are super hopeful not to consider that as an option, but yes, it's something that has been discussed. 

[Melissa in Australia]

Thinking of you

[prairiewindmomma]

Nerve pain after a fusion surgery is not uncommon, unfortunately.

I see she's already on gabepentin (which I think is a good call), I'd also ask about spinal cord stimulation therapy or using a TENS unit.

[almondbutterandjelly]

I don't have any advice, but I did want to mention that my dd had a similar extreme spinal fusion surgery, and she was pain free pretty quickly (certainly after several months).  More numbness issues in spots on her back than anything else.  I want to assure you that what your dd is experiencing is NOT normal, this long after surgery.  Keep pursuing answers!  

[bookbard]

Hi, my nephew had major surgery to put a bar in his ribs, over 12 mths ago, and he has basically been unwell ever since. They were also wondering if he had the allergy to the metal - I can't remember if they tested though. Anyway the only thing that has been helpful has been a painkiller which is also an anti-depressant. It has helped him get back to school (he was off for about 6mths). But the surgeons have not been super helpful in understanding how debilitating it all is. He will eventually get the bar out, I believe, and because he also needs further surgery they have to decide when. It's so full on. My sister is on different online groups talking to other people around the world trying to get answers about everything, but sometimes there just aren't good answers. 

[Lucy the Valiant]

I'm assuming she's had a spinal MRI - have they confirmed no tethered cord? (It can be "silent" until any time in life, so - while probably unlikely, may be worth checking?)

[momto3innc]

6 minutes ago, Lucy the Valiant said:

I'm assuming she's had a spinal MRI - have they confirmed no tethered cord? (It can be "silent" until any time in life, so - while probably unlikely, may be worth checking?)

When she was born her pediatrician wondered if she had one due to a dimple in her back. They did imaging when she was about a month old and said she did not. When the scoliosis diagnosis came up, I talked to her surgeon about it pre-surgery just to have it checked again.  And yes, recent MRI of her spine. Due to the hardware in her back, the CT scan showed them a lot more.

It’s funny you mention it though—I was just thinking about it today but I really think it’s been thoroughly checked out.

[Melanie32]

Just chiming in to say I’m so very sorry your daughter is going through this and so very sorry that you are as well. It’s so heartbreaking to watch our kids suffer and struggle to find answers.
 

My daughter has also been having a lot of pain and other seeming AI issues and it’s been just awful. Not much has shown up in her bloodwork until recently and now some thyroid issues are becoming evident and hyper mobility suspected. 
 

Praying for your daughter today and for you too mama. 💗 I hope they can find some answers soon and get your daughter the help she needs.