Calling Dr. Hive -- DS and pain

[Storygirl]

Poor DS18 has chronic pain in several parts of his body. Right now he also has an unrelated foot injury that has him in a boot and on crutches. He's had leg and knee pain related to being a long-distance runner, so he sees a sports medicine doctor and receives rehab (like physical therapy) from an athletic trainer. This has helped his legs and knees but not his chronic pain. The sports doc has referred him next to an osteopathic doctor at our local big university hospital. That appointment is at the beginning of June, and we have a follow up with the sports doc toward the end of June. He says if the osteopath doesn't help, he will give us another referral. I'm glad that he is not giving up, but DS is understandably depressed about the chronic pain, and I thought I'd reach out to Hive experts for other ideas.

Here are some details about his chronic issues. I'm wondering if they could be related to one another, though the doctors seem uninterested in that idea.

1) DS has neuropathy in his right shoulder blade area. The area is numb to the touch and sometimes has sharp stabbing pains (like bee stings). He's been seeing a pediatric neurologist for this for about two years. The doctor prescribed Gabapentin, which helps the pain but has not helped the overall issue. DS feels the numb spot is spreading, and now the other shoulder blade is starting to get the pain. At the first appointment, the doctor said that sometimes nerves will repair themselves and sometimes not, and only time will tell. He didn't do any kind of testing but just prescribed the medication. We've had follow up appointments regularly, and he's adjusted the med dosage but that's it -- always just says to come back again in six months. We are going to look for a different neurologist.

The Gabapentin really helps him, and if DS realizes that he missed a dose, he starts to panic, because he knows the pain that is going to happen. He's good about remembering, but it happened one evening last week. He took his missed dose but still the pain came on, and he was doing deep breaths to endure it and ended up crying. We held ice on it. gave him Tylenol, and rubbed Aspercreme on it -- everything we could think of. It took about 15 minutes to start feeling better, and he was in agony. I know that pain was intense then, because he's had some intense pain this past week with his other injuries and never cried.

2) DS has lower back pain, near his hips. This started at the end of last summer, maybe. He'd been seeing a chiropractor over the spring and summer, first for neck pain and then for general back pain, so we first made an appointment with them. His hips were hurting him so much right then that he was worried about walking in the halls between classes. It also hurt him to sit at school, because his tailbone hurt him. (They had made his neck pain better and had helped with the back pain previously.) The acute pain in his hips and tailbone reduced, so that he no long complained about walking, but the lower back pain never really went away, and chiropractic didn't fix it, though it would feel better while he was getting the adjustments. No issues showed up on their x-rays.

3) Back to things I mentioned at the beginning of my post. DS was having pain behind his knees after his cross country season, which kept him from participating in winter track and the beginning of spring track. I think we went to the sports doctor in January or February, when it was clear the knee pain was not getting better, and we also talked to him about the lower back pain. He took his own x-rays and didn't find anything. We had seen this same doc a year or two before for IT band pain. As before, he sent DS to rehab, which eventually helped his knee pain, but not the back pain. Doc ordered an MRI, which showed everything looks normal.

The sports medicine doctor put forward one hypothesis and told us where he will probably refer DS if the osteopathic doctor doesn't help, but I'm going to save that for a follow up post, because I don't want to steer the Hive's thinking.

Do you see any connnections between the upper back neuropathy and the lower back pain? The neurologist and sports doctor are each only interested in one part of the back and not the other, but I wonder.

Also, DS has had trouble sleeping, so has been working with a sleep doctor and counselor. I'm not sure that is a related symptom but thought I might as well include it.

Thanks for your thoughts! He's so discouraged with feeling that his body is in so much pain at such a young age, and so are we. We want to help him.

[Jean in Newcastle]

I immediately thought of his spine - pinched nerves etc.  But you say that an MRI looks normal. (I'm assuming that the MRI was looking in the correct places).  I have been going to a chiropractor for over 20 years now.  He keeps me mobile and in less pain but can't fix it because my muscles keep pulling my spine out of alignment.

Is he taking supplements like magnesium?  Has he had a metabolic panel done to see other mineral levels?  (It won't check magnesium levels because your body works hard to keep magnesium in the blood, taking it from the tissues in order to do so but it will show things like potassium, calcium etc.)

ETA:  how's his vitamin D level? 

Edited May 23, 2023 by Jean in Newcastle

[Arcadia]

Has Juvenile Idiopathic Arthritis been ruled out? I had knee pain so bad my face turn pale when I was in high school and one of the things the medical team wanted to check for was juvenile rheumatoid arthritis. That can cause neuropathy and spinal pain. They also ran a lot of blood tests to eliminate things like juvenile diabetes, liver or kidney issues.

[Pawz4me]

I'd consider the possibility of some type of spondyloarthritis.

[prairiewindmomma]

My mind went to autoimmune as well. Early on your MRIs and X-rays can look fairly normal, but your blood work will show high inflammation levels and you can still hurt like heck.

If his bone structures and cartilage and joints look ok, and bloodwork shows low inflammation levels, then I’d look at something like nerve conduction tests (NCS and EMG) to try to conclusively confirm  damage there.

Neuropathy is not uncommon with inflammatory arthritis disease (like 40% of people have it)—here’s an article that mentions where that neuropathy shows up and how they found it. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6396610/

[Katy]

I’d be concerned about autoimmune, b vitamin levels, and omega 3 levels. 

[TravelingChris]

That was what i was gping to say.  ANd just for everyone's information, you can have more that one auotimuner disease.  I know by the time I was in college, I definitely had 3 and right after 3 and a few rears later, 5, 

[KidsHappen]

Definitely check B12 levels.  

[rebcoola]

7 hours ago, Pawz4me said:

I'd consider the possibility of some type of spondyloarthritis.

Thats what's i was going to say magic word is non-radiographic it takes years to show up on imaging. Can be diagnosed by symptoms and high immflammation markers. Rheumatologist are the best doctors for it.

Edited May 24, 2023 by rebcoola

[kbutton]

I would try to get in with a pediatric rheumatologist. Others have indicated likely diagnoses. 

If B12 is an issue and he eats well, they need to look at pernicious anemia. It's in the AI constellation, and it's usually something that affects older adults, so they might not look for it unless AI stuff is already in the picture.

[Storygirl]

Thanks for your thoughts so far. Some more details:

Iron  -- The sleep doc ran some blood work, and his iron was at the bottom of the normal scale, so DS has been on ferrous sulfate for almost three months. Sleep doc says that he will not bother to recheck the iron levels, because the supplements should bring it up, and after the refills run out, he doesn't need to take it any more. I asked if low iron should be on the radar for DS for the future, and the doctor said there should be no concerns. I question his lack of ongoing concern in my mind. DS is due to switch from pediatrician to regular doctor, and I think his new doc should have it on his radar to check periodically.

Inflammation markers -- The sports doc ran blood work, and I'll have to pull that up to see what all was included (I looked but can't remember). The inflammation markers were within normal range.

Vitamin levels, etc -- I'll have to check to see what has been tested, but nothing but the iron was out of normal range. They may not have tested B12, magnesium, vitamin D, etc.  For awhile during the pandemic, we were all supplementing with Vitamin D and a multivitamin, but I don't think DS has been taking them recently.

MRI -- this was ordered by the sports doctor, not the neurologist, and it was only for the lower back. My BIL is a radiologist and commented recently that he's shocked the neurologist never ordered any imaging for his upper back issues; this is what prompted us to decide to look for a different neurologist. So there has so far been no looking for a pinched nerve or anything like that.

 

[Storygirl]

Arthritis is what the sports doc thinks should be checked for next, if the osteopath doesn't find a way to solve the issue. He was checking the bloodwork and MRI for signs of arthritis and autoimmune issues, but there weren't any detected. If there had been, he would have referred to rheumatology right away. Now, he will probably refer to rheumatology when we see him at the end of June, if DS does not improve before then.

Do you think the lower back pain and the upper back neuropathy could be linked through an autoimmune arthritis? I did a quick google earlier this week, and arthritic neuropathy seems more connected to limbs.  @prairiewindmomma thank you for the link. I'm going to read that next.

[prairiewindmomma]

I do find the lack of an upper spine mri and emg testing concerning, fwiw, even with the rheumatology issues aside from this all. Axillary nerve damage (kinda that shoulder blade/arm area) can result in not only pain, but loss of use of your arm. He shouldn’t be jumping to pain management when you could be looking at functional use loss in the future also.

 

[Arcadia]

15 minutes ago, Storygirl said:

Iron  -- The sleep doc ran some blood work, and his iron was at the bottom of the normal scale, so DS has been on ferrous sulfate for almost three months. Sleep doc says that he will not bother to recheck the iron levels, because the supplements should bring it up, and after the refills run out, he doesn't need to take it any more. I asked if low iron should be on the radar for DS for the future, and the doctor said there should be no concerns.

I took SlowFE during my second pregnancy and it took quite some time for iron levels to improve. I had to take iron supplements for both my pregnancies to stay at the low end of normal. If I want to get my iron levels up without supplements, I have to have regular food intake of red meat because I absorb heme iron much more efficiently. I get fatigued and dizzy when my iron levels are trending low. While I am sure your son rather not have frequent bloodwork, it is rather common to have two or three more CBC to make sure iron levels are stable. Also, some doctors would run the iron panel test (https://medlineplus.gov/lab-tests/iron-tests/) as well as CBC. My oncologist ordered that for me. I do have prior history of anemia and asthma. 

Vit D panel was a separately ordered test by my oncologist. 
 

My mom was negative in her bloodwork for rheumatoid arthritis for two years before they turn positive. Her rheumatologist treated her for rheumatoid arthritis despite the negative results as she was showing the symptoms for it and not everyone with rheumatoid arthritis would get positive bloodwork results.

[prairiewindmomma]

Storygirl—just as an aside for if you go to a rheumy at the end of all of this….Not all rheumy docs are great at diagnosis and early disease management. Use word of mouth to find someone good. I agree with the above that if you can find someone that specializes in spondy that would be good. But, that’s an extra level of hard to find. But, you do need someone who is going to see beyond joint damage as the main means of making a dx.
 

You will also want to talk to whomever has been doing PT to see if they think there is any connection. Tight Achilles tendons and plantar fasciitis and a few other things are correlated with certain types of inflammatory arthritis more than others. Often they will just give an “inflammatory arthritis” label early on because some things take time to sort out. I don’t fit neatly into labels and it is only 15 years in that some things are becoming clearer. But, many people with AI arthritis have patterns of muscle or tendon issues in addition to joint issues and those are worth knowing and mentioning in the intake physical. 

 

[Pawz4me]

This article might be helpful. It briefly mentions hip and shoulder involvement in spondyloarthritis, although it describes shoulder involvement usually manifesting as chronic rotator cuff tears, not as neuropathy. It also mentions associated knee arthritis. 

[Storygirl]

I've been thinking that ankylosing spodylosis sounds like a possibility, so it's interesting that a couple of you have brought it up. In sure that the sports doc will refer us to a rheumatologist within the same children's hospital system. But our insurance should let us go to a specialist without a referral, so we can do some research. We live in a big medical city and near enough to others that we could travel, so I can see if we can find a specialist in spondy. Thanks for that idea.

The rehab therapist has mentioned several times how tight DS is and has made a point of working on his flexibility. He did also have some plantar fasciitis a couple of years ago.

@Pawz4me thank you for the article!

It's interesting that it can take a long time for markers to show up in bloodwork. The sports doc did say that the absence of them did not mean that arthritis is off the table.

 

[ktgrok]

With joint pain and low iron and sleep issues I'd ask for a celiac test as well. Simple blood test can rule it out, but celiac can cause arthritis syptoms from attacking the joints, but also can cause low iron and low B12 (and low B12 can cause nerve issues). Can also cause insomnia, depression, etc. Y0ou do NOT have to have serious GI issues to have celiac disease. Anyone with unexplained low iron should be screened for it. There is no reason a young adult male would have low iron just for fun, you know?

[kbutton]

I know not everyone does social media, but joining some support groups for things like ankylosing spondylitis might yield a good recommendation for a practitioner. Someone who is familiar with AS will undoubtedly be familiar with other arthritic disorders.

[kbutton]

https://www.medifind.com/specialty/pediatric-rheumatology/US

[Pawz4me]

9 hours ago, Storygirl said:

 

It's interesting that it can take a long time for markers to show up in bloodwork. The sports doc did say that the absence of them did not mean that arthritis is off the table.

 

Yes. I had RA symptoms for most of my adult life. I was first tested close to ten years before my rheumatoid factor finally turned positive and I got a firm diagnosis, and by then it was something like 3.5 times higher than the top of the normal range and I had multiple very obvious, visibly swollen joints. Even then (and since) my inflammation markers were in the normal range. AI stuff can be really weird.

Edited May 24, 2023 by Pawz4me