Dr. Hive: long-term headaches, attention problems, aches and pains

[Innisfree]

Any idea what might be going on here? Dd17 has been complaining of persistent headaches, knee and hip pain, exhaustion, eye pain and sensitivity to light, and difficulty focusing since some time before Christmas.

She's had blood work which turned up nothing, including a test for Covid antibodies which indicated she hasn't been infected. I don't know how much to rely on the Covid info, since she could have been exposed long enough before to not have the test show antibodies. Fwiw, she's triple vaxxed and has been in virtual school, but she does go masked into stores and a weekly activity. For a while over the summer she quit masking at her activity, but resumed with Delta. She hasn't had any noticeable illness over the last two years, but does have allergies, so sniffles pass largely unnoticed.

Dd herself is vague about when the symptoms started. She's had long-term aches and pains since her horseback riding days a few years ago, so that confuses the issue. She feels like what she's experiencing now is different and more. I can see that her sleep patterns have changed, with her falling asleep much earlier since roughly the week before Christmas.

The pediatrician was inclined to put everything down to depression or stress once he heard she was on the spectrum and had been treated for depression before. I don't think that's the case: there aren't new stressors, I don't see depression, and I can see changes in sleep patterns. He did refer her to neurology, but that appointment isn't until April.

Any thoughts?

ETA that blood work did show a past mono infection, which we weren't aware of at the time, whenever that was. No idea how recent it might have been.

Edited February 26, 2022 by Innisfree

[Selkie]

Was she tested for tickborne diseases? My ds had similar symptoms when he had Lyme.

[Innisfree]

2 minutes ago, Selkie said:

Was she tested for tickborne diseases? My ds had similar symptoms when he had Lyme.

No, no she wasn't. That's a good thought, thanks.

[Pawz4me]

Was her thyroid tested?

[Dmmetler]

2 minutes ago, Pawz4me said:

Was her thyroid tested?

Agreed. That's basicallt what I get when my TSH is too high and my free T3 and T4 are too low-I have Hashimotos. 

[catz]

Is she being treated currently for depression or anxiety?  Sometimes that can help sleep patterns too and that can make physical symptoms more clear.  Sometimes feeling cruddy physically can start to spiral with feelnig cruddy mentally and it can be hard to parse the two.  And I have first hand experience with this.  Is she joyful at times?  Does she have social outlets?  Can she be physically active at all?  Has her physical activty level changed recently?  Does she struggle with winter?

 The past mono infection is interesting.  Hmmm.   I definitely agree with a thyroid check if that wasn't done.  Any hormonal checks done?

But as someone who has had some vague physical stuff like this that can be hard to parse through in the meantime while slow medical wheels are grinding, I'd consider encouraging her to move daily, start with short walks, clean diet, consider adding a probiotic and a good multivitamin if she isn't taking those.  I know cleaning up diet can be hard with a 17 year old, I have a picky 17 year old daughter.  If I had to focus on one thing, I'd try to avoid processed sugar

Edited February 26, 2022 by catz

[prairiewindmomma]

Thyroid and vector borne disease (not just  Lyme but also Babeosis) both need rule outs, imo. I would also want to have low vitamin D and anemia ruled out.

[Innisfree]

12 minutes ago, Pawz4me said:

Was her thyroid tested?

I'll have to check. I think so, but I seem to remember reading here that superficial testing isn't always enough for thyroid...? 

5 minutes ago, catz said:

Is she being treated currently for depression or anxiety? 

No. She isn't interested, and I don't see indications that it's needed currently. She does get out and walk daily, is enjoying her activity and looking forward to competitions coming up. She's not really a social person, but she's meticulous and involved with the things that matter to her.

[prairiewindmomma]

One helpful thing may be to chart symptoms day to day. You can use a series of colored pencils or highlighters and put dots on a blank calendar and chart on which days she has joint pain, headaches, etc. to get a sense of the scale of it all. Rheumatology (if you end up that route) is going to want to know if the pain is worse in the morning or all day or after activities and so on. 

[prairiewindmomma]

Adding—I am super angry for you and your Dd that the doctor is blowing you off like that. That is super crappy medicine they are practicing—like shockingly bad to have not done Lyme testing at minimum.

[Innisfree]

Just now, prairiewindmomma said:

One helpful thing may be to chart symptoms day to day. You can use a series of colored pencils or highlighters and put dots on a blank calendar and chart on which days she has joint pain, headaches, etc. to get a sense of the scale of it all. Rheumatology (if you end up that route) is going to want to know if the pain is worse in the morning or all day or after activities and so on. 

This is something I've suggested to her, but she hasn't followed up on. I need to get more involved in following through. It's a (very) fine line between supporting and annoying.

[Innisfree]

Just now, prairiewindmomma said:

Adding—I am super angry for you and your Dd that the doctor is blowing you off like that. That is super crappy medicine they are practicing—like shockingly bad to have not done Lyme testing at minimum.

Yeah, it was honestly like he stopped listening the moment I acknowledged past depression. This is a relatively new doc at the practice. I should go back and insist on someone else.

[prairiewindmomma]

ITA—with my quirky kids we have had to talk a lot about body awareness, why noting which symptoms on which days matters, and how to advocate for good health care. We have also had to work on other aspects of medical care. It’s a hard line to walk; hugs!

[Dmmetler]

13 minutes ago, Innisfree said:

I'll have to check. I think so, but I seem to remember reading here that superficial testing isn't always enough for thyroid...? 

No. She isn't interested, and I don't see indications that it's needed currently. She does get out and walk daily, is enjoying her activity and looking forward to competitions coming up. She's not really a social person, but she's meticulous and involved with the things that matter to her.

They need to check TSH, free and reverse T3 and T4 at a minimum, and ideally thyroid antibodies as well. TSH alone won't necessarily show thyroid disease, espeicially not in a younger woman. (It took probably 20 years from the first symptoms for me to get to the point that regular blood work showed anything wrong, but my Endo says reading my chart, she is willing to bet I had thyroid antibodies and probably low free T3/T4 for that entire time, with occasional swings up and down that match periods of greater and lesser health and well being). 

[Spryte]

Get a good tick borne disease panel. Igenex is best.

DS had those symptoms with bartonella (from a tick). We knew he had babesiosis and Lyme, and thought everything had been treated. Nope. Missed one! 

[Ann.without.an.e]

My first thought was thyroid as well. Ask for a full thyroid panel. Often they don't pull them on her age unless you request it. Thyroid can cause depression too. They refused to test my younger dd at first even though I have Hashimoto's AND her older sister does because she didn't have weight gain. I pushed them and said they needed to test and her TSH was a 16 which was way higher than dd or me at diagnosis. 

Younger dd also wasn't taken seriously about another issue because "it seemed like anxiety". They failed to test a basic hemoglobin and when I came here and someone said "look up anemia symptoms" it opened my eyes. I took her back to the dr and asked for a hemoglobin test. She was transfusion level anemic and at risk for organ damage. All of this to say, be proactive. Don't hesitate to tell them what to test her for. No one pays attention or cares about her like you do ❤️ Smart coming here because this group of ladies has figured out medical things for my family that doctors totally overlooked not once but multiple times haha. 

ETA: when they test her thyroid, ask for actual lab results and come back here and let us know. Don't just take "normal" as an answer. 

Edited February 26, 2022 by Ann.without.an.e

[Corraleno]

When you request testing for tick-borne disease, make sure the doctor understands that the infection is chronic rather than acute and orders the right test. When DS was tested, the initial ELISA test was positive, but it was incorrectly followed by an IgM Western Blot test, which was negative because IgM antibodies generally represent a recent, acute infection. The doctor insisted the ELISA was a false positive, and he "absolutely guaranteed" that DS didn't have Lyme. He was very patronizing when I asked for a referral to another doc — who immediately ordered the correct IgG test, which was overwhelmingly positive. I shudder to think where DS would be right now if we'd believed the first doctor's "guarantee" and his Lyme had gone untreated.

[Ellie]

Thyroid is definitely something to rule out.

It could also be food related. Testing is not always successful at figuring that out; an elimination diet of some kind would do it. Dairy is a likely culprit.

[kbutton]

33 minutes ago, Innisfree said:

Yeah, it was honestly like he stopped listening the moment I acknowledged past depression. This is a relatively new doc at the practice. I should go back and insist on someone else.

Yes.

And if someone runs all the testing you want, and nothing shows up, you might get The Look. You know, the one that says you're nuts. If so, try another. Even if they can't figure out what is wrong, she needs a good doctor that will support her until something shows up (5, 10, 15 years later sometimes), or one that can say, "This might be subclinical, so let's do xyz (likely not meds) that will support her thyroid/lower inflammation and see if it helps her feel better and have more energy." 

Signed, Subclinical Susie (subclinical for anything a doctor ever thinks might be wrong with me)

[Kanin]

1 hour ago, Dmmetler said:

Agreed. That's basicallt what I get when my TSH is too high and my free T3 and T4 are too low-I have Hashimotos. 

Really? Interesting. I hadn't thought those were thyroid things. I've had similar for a while now!

[Ann.without.an.e]

10 minutes ago, Ellie said:

Thyroid is definitely something to rule out.

It could also be food related. Testing is not always successful at figuring that out; an elimination diet of some kind would do it. Dairy is a likely culprit.

All my joint pain and headaches went away when I nixed all dairy and gluten for good. It really is life changing for a lot of people. Not everyone, of course, and it is so hard a first. Years later, I don't think anything about it. It is easy and idc about the foods I used to miss. 

[Pawz4me]

20 minutes ago, Kanin said:

Really? Interesting. I hadn't thought those were thyroid things. I've had similar for a while now!

FWIW -- I've never been prone to headaches, but in the months before I was diagnosed with hypothyroidism (Hashi's) I had an almost constant headache. And the muscles aches/stiffness were awful. I had galactorrhea. My attention span was non existent and I felt like I'd lost dozens of IQ points. I smelled phantom smells (mostly smoke). All that was on top of weight gain, fluid retention, hair loss, etc. A wonky thyroid can seriously mess a body up.

Edited February 26, 2022 by Pawz4me

[catz]

25 minutes ago, Ann.without.an.e said:

All my joint pain and headaches went away when I nixed all dairy and gluten for good. It really is life changing for a lot of people. Not everyone, of course, and it is so hard a first. Years later, I don't think anything about it. It is easy and idc about the foods I used to miss. 

Sugar and white carbs are like this for me so it can take some experimenting.  

[Kanin]

20 minutes ago, Pawz4me said:

FWIW -- I've never been prone to headaches, but in the months before I was diagnosed with hypothyroidism (Hashi's) I had an almost constant headache. And the muscles aches/stiffness were awful. I had galactorrhea. My attention span was non existent and I felt like I'd lost dozens of IQ points. I smelled phantom smells (mostly smoke). All that was on top of weight gain, fluid retention, hair loss, etc. A wonky thyroid can seriously mess a body up.

Whoa, I had no idea! My low grade headaches are happening more often, and I've had a neck and back pain for at least a year. Anxious and can't concentrate. Not too hijack the thread, but thank you for posting this! 

[Tanaqui]

Headaches with eye pain and light sensitivity sound like migraines to me. Migraines + joint pain + fatigue sounds like something with the connective tissue... and we all know that connective tissue disorders such as EDS are common in the autistic population. Symptoms can seem mild in earlier life and then more serious later on as it gets harder to mask and physical wear and tear on the body takes its toll, or can *become* more serious as a response to a condition such as post-viral illness.

I'm not saying that where everybody else on this thread is going is wrong. I'm only pointing it out in case testing rules out what else has been suggested or if you think there might be two or more factors here. Unfortunately, it's very possible to have Lyme and/or a thyroid problem AND something else.

Quote

The pediatrician was inclined to put everything down to depression or stress once he heard she was on the spectrum and had been treated for depression before.

 

So typical, I swear.

[Amy in NH]

Toxoplasmosis?

[Innisfree]

1 hour ago, Tanaqui said:

migraines

This is something we've considered, but dd says the headaches don't seem as severe as she thinks migraines are supposed to be. Is there such a thing as a mild migraine?

[kbutton]

2 hours ago, Innisfree said:

This is something we've considered, but dd says the headaches don't seem as severe as she thinks migraines are supposed to be. Is there such a thing as a mild migraine?

You can have a migraine without a headache, so yes. 🙂 Usually you need sensitivity to light/sound/motion (not necessarily all of those). Most people have some degree of nausea, I think. My worst migraines mean I have to lie super still, but sound doesn't bother me. All of them make me bilious if I move around. I get auras with the worst, and slightly blurry vision/faux floaters with the more mild ones. Once in a while the nausea hits first. I finally learned that if I have sharp nausea that hits me out of the blue, I need to take ibuprofen, and if it goes away, it's just another form of migraine. Sometimes it's more like being car sick if I move around or have to look at something, and then the headache builds later (and may not get terribly bad).

[Katy]

I would order a genetic test from 23&me (the medical version) and run the results through https://promethease.com.

Medically I’d also ask for an autoimmune panel. 
 

If nothing abnormal comes up I’d consider a low histamine diet (more beans, less cheese and aged meat, no pork).

[TravelingChris]

7 hours ago, Dmmetler said:

Agreed. That's basicallt what I get when my TSH is too high and my free T3 and T4 are too low-I have Hashimotos. 

I wasn;t sure what autoimmune issue but it does sound like it good very well be an autoimmune issue.  Lupus and Sjogren's can also have these same symptoms too.  

Does she have dry mouth?  Anything different with her dental visits like more cavities all of a sudden or issues with mouth sores? 

4 hours ago, Tanaqui said:

Headaches with eye pain and light sensitivity sound like migraines to me. Migraines + joint pain + fatigue sounds like something with the connective tissue... and we all know that connective tissue disorders such as EDS are common in the autistic population. Symptoms can seem mild in earlier life and then more serious later on as it gets harder to mask and physical wear and tear on the body takes its toll, or can *become* more serious as a response to a condition such as post-viral illness.

I'm not saying that where everybody else on this thread is going is wrong. I'm only pointing it out in case testing rules out what else has been suggested or if you think there might be two or more factors here. Unfortunately, it's very possible to have Lyme and/or a thyroid problem AND something else.

 

So typical, I swear.

And migraines , joint pain and fatigue are symptoms of Lupus and can also be of Sjogren's.  As well as Hashimoto's,.  As well as many vector borne diseases affect a few different body parts too.  Plus we know that viruses like mono can trigger an autoimmune issue to start-- most, if not all, autoimmune issues are partially genetically based but need a trigger to activate.  

Plus at least some depression is autoimmune too---- well known that a few different AI diseases can cause depression which is reversed when the underlying disease is better managed.

[Ellie]

6 hours ago, Innisfree said:

This is something we've considered, but dd says the headaches don't seem as severe as she thinks migraines are supposed to be. Is there such a thing as a mild migraine?

Migraines can be food related. Dairy is a common culprit, but it can be anything: a friend's migraines were caused by, of all things, pickles. o_0 Someone else I knew did an elimination diet, and the thing that triggered the migraine was a grilled cheese sandwich. Dairy.

[Splash1]

My daughter started out with these symptoms as well at a similar age.  She is now 22 and has recently been diagnosed with hypermobile Ehler's Danlos Syndrome or Hypermobility Spectrum Disease which are connective tissue diseases. It was really hard to get someone to make an actual diagnosis and even harder to get some help.  Went to Rheumatology and Neurology and that ruled out the autoimmune and neuromuscular diseases.  Fortunately I have lots of practice dealing with the medical system and am very persistent so we finally found some doctors who listened and then some that are helping us find ways to keep her in the best shape possible. 

I hope it is something else, but wanted to bring it to your attention.  My daughter saw someone for headaches(migraines), dizziness, stomach issues, anxiety, etc since she was sixteen.  When she was 20 she started complaining her knees were really hurting, then it was knees and hips, shoulders,,etc.  Brain fog or trouble focusing (ADHD?)  

 

 

[Tap]

I would start with a visit to a chiropractor. Make sure that her alignment is good and that her muscles aren’t overworked. Almost all of those symptoms could just be alignment based and easily solved. 
 

I have a daughter who got weekly massages and adjustments all thru high school and 2 years after. She has EDS so her issues are not one and done chiro visit issues. She also has POTS and migraines. The massage appointments really made a big difference for her to manage the pain without meds. 
 

I would get the blood panels mentioned above done too. When my daughter’s  fatigue was bad, I had her visit a therapist to eliminate the idea she was depressed. That helped the doctors stop putting that label on the fatigue, and they started looking for other reasons for it. 
 

I am curious about her fatigue. How does she describe it? Does she have a hard time waking up? Does she feel ok in bed but bad when she sits up or rolls over? How about standing up after laying down? Does she feel like she can’t emotionally get out of bed, or physically? Or is she still active, but having to put much more effort into just living?

Headache with light sensitivity, is a migraine. She should see a migraine specialist for them.

If you do these things, and don’t get answers, I would find a good naturopathic doctor or OD. A different way of looking at illness can be very helpful.

 

((((( hugs for you all)))))

[Tanaqui]

Migraines do not have to be any particular severity - it's even possible to have all the symptoms of a migraine or cluster headache without the actual headache part.

To make it worse, "severity" is self-reported. Somebody who is used to some level of chronic headache may rate themselves at a "3" for the intensity that another person might call a "7", and so on.

[Katy]

Be careful with the chiropractor. Neck adjustments are the most frequent cause of stroke in young women. 
 

ETA: or they were before covid. I have no idea since. 

Edited February 28, 2022 by Katy

[Innisfree]

56 minutes ago, Katy said:

Be careful with the chiropractor. Neck adjustments are the most frequent cause of stroke in young women. 

😳 

I don't think we're likely to see a chiropractor, though I know lots of people find them helpful. I'm just more comfortable with standard medical practice. 

Edited February 28, 2022 by Innisfree

[Katy]

Actually my statistic on young women and stroke was pre-covid. I have no idea how a virus that causes blood clots has impacted that. I’ll amend my statement.

[kbutton]

6 hours ago, Katy said:

Be careful with the chiropractor. Neck adjustments are the most frequent cause of stroke in young women. 
 

ETA: or they were before covid. I have no idea since. 

While I really do believe this warning is warranted, I have yet to meet someone that has had a dangerous chiropractor (from this perspective, not saying there are ones that are totally woo), but I've met lots of people with crappy doctors. I know a ton of people that see chiropractors in different parts of the country. 

They warn against chiropractic for connective tissue disorders, but yet my son's support group for CTD's that has kids from all over the place in it is full of people who swear their chiropractor keeps them upright and are very happy to have that type of care. I know our former chiropractor noticed scoliosis in my kids long before their pediatrician was even screening for it (one has trivial scoliosis, and the other has significant scoliosis due to his CTD).

It would also be worth a PT referral, especially if connective tissue stuff is possible. They are quite likely to notice hypermobility and have techniques to stabilize it. 

[plaidpants]

Ophthalmology, ergonomics/PT, and basic blood work. Any weird sleeping habits, eating, movement, etc? Does she have the space to "stop" whatever (not give up, but "I hate this and makes me miserable and I've put a good effort in")

[Katy]

20 minutes ago, kbutton said:

While I really do believe this warning is warranted, I have yet to meet someone that has had a dangerous chiropractor (from this perspective, not saying there are ones that are totally woo), but I've met lots of people with crappy doctors. I know a ton of people that see chiropractors in different parts of the country. 

They warn against chiropractic for connective tissue disorders, but yet my son's support group for CTD's that has kids from all over the place in it is full of people who swear their chiropractor keeps them upright and are very happy to have that type of care. I know our former chiropractor noticed scoliosis in my kids long before their pediatrician was even screening for it (one has trivial scoliosis, and the other has significant scoliosis due to his CTD).

It would also be worth a PT referral, especially if connective tissue stuff is possible. They are quite likely to notice hypermobility and have techniques to stabilize it. 

I don’t doubt that chiropractic care is often the best treatment for musculoskeletal pain.  I even had one fix a severely sprained ankle with three adjustments once.  IF that was the problem ONE adjustment would make an immediate and obvious difference. 

But for problems that are most likely previous virus, tick borne infection, neurological, autoimmune or some combination therof? It will drain your wallet with every other day neck cracking which puts you at high risk for stroke and doesn’t help at all. Some chiropractors are great. Others don’t believe in the scientific method at all and it’s best not to listen to them explain why adjustments prevent disease. 

*I am a little salty about this, a friend’s husband was the quack kind and died from Covid recently. And I wasted WAY too much money on a quack when I went through similar symptoms as OP’s daughter until I saw a few medical doctors who actually helped. 

[kbutton]

26 minutes ago, Katy said:

I don’t doubt that chiropractic care is often the best treatment for musculoskeletal pain.  I even had one fix a severely sprained ankle with three adjustments once.  IF that was the problem ONE adjustment would make an immediate and obvious difference. 

But for problems that are most likely previous virus, tick borne infection, neurological, autoimmune or some combination therof? It will drain your wallet with every other day neck cracking which puts you at high risk for stroke and doesn’t help at all. Some chiropractors are great. Others don’t believe in the scientific method at all and it’s best not to listen to them explain why adjustments prevent disease. 

*I am a little salty about this, a friend’s husband was the quack kind and died from Covid recently. And I wasted WAY too much money on a quack when I went through similar symptoms as OP’s daughter until I saw a few medical doctors who actually helped. 

Gotcha. I don't mean in place of good medical care. Just if it turns out to be more of a mechanical, connective tissue sort of thing. 

[Tap]

8 hours ago, Katy said:

Be careful with the chiropractor. Neck adjustments are the most frequent cause of stroke in young women. 
 

ETA: or they were before covid. I have no idea since. 

Even pre-Covid…. I am not find any data on this. Also, since stroke in young people is incredibly rare, I don’t think having a chiro adjustment leading to a stroke in a young person could possibly be as common as other injury risks such as a car accident. 

[Katy]

20 minutes ago, Tap said:

Even pre-Covid…. I am not find any data on this. Also, since stroke in young people is incredibly rare, I don’t think having a chiro adjustment leading to a stroke in a young person could possibly be as common as other injury risks such as a car accident. 

Did you try google?  Because I just did and immediately found 4 studies and multiple journal reports with no digging or scrolling.

ETA: Searched for "neck adjustments chiropractic care stroke risk young women"

Edited February 28, 2022 by Katy

[gardenmom5]

It very much sounds biochemical imbalance or deficiency.  Are you in a state with naturopaths?   Many will do zoom, and can see/order bloodwork you have done in your own state to refer to.

for example: niacin deficiency can cause both photosensitivity and migraines.  western medicine will often dismiss low levels as irrelevant unless it's super low, but you can be symptomatic long before that.   that's just one thing, it could be something else entirely.