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Muscle weakness and dizziness that improves as I run.
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So...reaching out to this community not specifically for medical advice but for suggestions on what questions I should be asking my medical team.

I'm a female in her late 40s. I'm a decent and experienced runner - I've broken 3 hours for the marathon and 5:30 for the mile, both after age 40.

For the last ten days, I've been dealing with the following:
*muscle twitching in my legs that gets worse at night as I fall asleep. I've always had benign fasciculation syndrome in my calves after hard workouts, but this is in my quads also, and is noticeable at night.
*a sense of mild vertigo/disorientation that improves after about an hour or so of running
*a feeling of being weak and off balance, especially when running on uneven pavement/downhill. This also improves when running, but only after an hour or so. It's like I'm running on a bosu ball that eventually levels out.
*continuing pressure behind my eyes.
*at first I was also experiencing a migraine aura (no pain), but I took a migraine med and that took care of that.

[notable: these symptoms did start the day after I got my flu shot for this year - I'm not sure if any correlation. I have not had any issue with the flu shot in the past several years.]

The oddest thing is how different my paces are as a run progresses. Until I've been running for an hour or so, I physically cannot run even moderately fast for even a small distance without feeling like I am going to fall on my face. But again, the longer I run the better I feel, the smoother my gait, and the faster the pace available to me. It's like I forget how to run every time, and have to relearn the skill each run.

I don't feel tired at all - my legs are just totally uncoordinated at first. (I do a solid pre-run mobilization routine pre-run, so it's not like I'm rolling out of bed and trying to run).

Background: I have a mild form of ulcerative colitis and also asthma - I'm on Advair, Qvar, and the biologic Xolair to control the asthma, and on oral mesalamine for the ulcerative colitics. I also have a family history of auto-immune and neurologic issues and have Raynauds and chronic migraines myself.

I had very similar symptoms last year, except that I did NOT work out of it and also felt exhausted all the time. At that time, we determined I had a severe folate deficiency (1.7 where below 3.4 is deficient), and I started folic acid supplements, which helped. I am still on those.

I also had some problems with fatigue and feeling short of breath this summer - at that time some bloodwork showed a mild iron deficiency (tsat of 15%), so I went on iron supplements, and that fixed that. Once the tsat was in the normal range and I was feeling better, we cut back the iron supplements to once every 2-3 days to avoid taking too much.

I've been tested a lot - last summer when I had the folate deficiency we ruled out other issues with a sleep study (fine) and a neurology work-up for MS (EMG/nerve conduction and brain MRI with/without contrast - also totally fine).

This summer I had a colonoscopy/upper endoscopy and a abdominal CT scan to see whether I had Crohns (a concern raised because of the folate and iron deficiencies, despite a good diet). Some minor inflammation in the large intestine and lower part of the stomach, but otherwise the only notable thing was that my stomach clears out food very slowly.

Bloodwork has always been good, other than the folate and iron issues, and slightly high vitamin A (which was weird, since I don't supplement that). Even with low folate and/or iron, I've never had any sort of anemia. B12 has always been slightly high (I do supplement that, upon the direction of a doctor). My last round of bloodwork was in August.

I saw my neurologist last week to get a refill of my migraine meds and explain the weakness/dizziness. He had me do some tests in front of him - I was mostly fine but had some trouble balancing with my eyes closed. He scheduled me for a follow-up EMG and also told me to start 200mg of Riboflavin daily plus CoQ10.

I've also reached out to my primary care to see what he thinks I should do, and whether I should come in to see him. When he contacts me, I'm going to ask him if another round of bloodwork is in order - looking at the CBC/CMP and also B-vitamin levels.

I happen to have a follow-up scheduled with my rheumatologist next week, so I'm also going to ask her about this.

My question to this group again is - any other questions I should be asking/steps I should be taking? Neurology and nutrition deficiencies/toxicities is what's at the front of my mind, but not sure if other avenues to pursue. And has anyone else experienced anything like this?
Last edited by: darkwave: Oct 13, 21 13:14
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Re: Muscle weakness and dizziness that improves as I run. [darkwave] [ In reply to ]
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Random question, but do you think you suffer from anxiety or stress? I only ask because I have had a massive range of weird and scary symptoms in the past, from bladder pain to crazy muscle twitches (like leaping off the bed crazy) when in bed - all down to anxiety it turned out. I often feel like my legs are really trembly and weak and almost "faint" even though my head is fine. I also have raynauds (and general inability to keep warm) and migraines (might be a coincidence).

I don't have any other advice I'm afraid, but I hope you get to the bottom of it quickly.
Last edited by: Island: Oct 13, 21 13:40
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Re: Muscle weakness and dizziness that improves as I run. [darkwave] [ In reply to ]
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“Things only get better after an hour of exercise” sounds like an HPTA axis issue… I’d get a full endocrine workup while you’re at the doctor

Edit: I also agree that stress can do crazy stuff

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Last edited by: ericMPro: Oct 13, 21 13:50
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Re: Muscle weakness and dizziness that improves as I run. [darkwave] [ In reply to ]
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Thanks all - both good things to keep in mind.

Regarding anxiety/stress - absolutely, that's a possibility to be considered, and I am naturally a type A/tense person. I wouldn't say that I've been under any more stress recently than at other times; at the same time, I feel very on edge/tense right now, and that could be mental and/or physical. I do have a sports psychologist that I see a few times a year to check in, and I have an appointment with him tomorrow, so this will be discussed with him.

I've suspected there might be a mental component to this, as it seems to get worse when a) I'm in the dark or b) when cars/bikes/other runners get too close to me (I was hit by a truck while running two years ago, and fast objects too close to me makes me tense).

OTOH, so much of this is so very similar to how the folate deficiency manifested. The only differences are that I work out of it and I'm not exhausted.

I should also note that my quads seem to have gotten noticeably weaker recently, though I regularly run hilly routes and squat at the gym. No pain at all. Just shakiness.
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Re: Muscle weakness and dizziness that improves as I run. [darkwave] [ In reply to ]
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I would do a differential diagnosis designed to rule out the most serious things first... like heart disease or your endocrine system, or endocrine system issues jacking up your heart indirectly, etc.

E

Edit: *actual* doctors rule out by probability and not risk I think...

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Last edited by: ericMPro: Oct 14, 21 5:01
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Re: Muscle weakness and dizziness that improves as I run. [darkwave] [ In reply to ]
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You describe some things I felt and dealt with for a long time.
It was getting to the point I couldnt walk a straight line and I was having some significant neuropathy issues in my feet and legs.
Had all the tests for MS etc....and blood work showed up pretty normal but being a vegetarian for many years the neurologist diagnosed it as B6/B12 deficiency and said to start supplementing and hopefully things will right themselves although he said permanent damage may have already taken place.
I started supplementing and eating more foods rich in B vitamins and now over two years later I can say Im almost back to normal.
It took forever for me to start feeling better.
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Re: Muscle weakness and dizziness that improves as I run. [Dudaddy] [ In reply to ]
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Dudaddy wrote:
You describe some things I felt and dealt with for a long time.
It was getting to the point I couldnt walk a straight line and I was having some significant neuropathy issues in my feet and legs.
Had all the tests for MS etc....and blood work showed up pretty normal but being a vegetarian for many years the neurologist diagnosed it as B6/B12 deficiency and said to start supplementing and hopefully things will right themselves although he said permanent damage may have already taken place.
I started supplementing and eating more foods rich in B vitamins and now over two years later I can say Im almost back to normal.
It took forever for me to start feeling better.

Thanks - this is really helpful. I have a history with B-vitamins, which would align with this - I'm already supplementing with B2, B9 (folate), and B12 - each at the instruction of a doctor. I started the B9 and B12 last year, and the B2 last week (My personal bias is to supplement as little as possible, but that's not where life has taken me).

I will raise the question of other B-vitamins - as far as I can see, we've only ever tested B9 and B12. When I'm supplementing, those are fine. Actually slightly high, which I've been told is fine.

Because of my ulcerative colitis, my diet is a bit limited. Plenty of lean meat and gluten-free carbs, but I'm limited in my intake of fruits, veggies, and legumes. That being said, my diet really hasn't changed in the past 4-5 years, so I'm not quite sure why any nutritional issues would be popping up in the last 18 months.


Another interesting note: I generally run 4-5 days a week, and pool-run or swim the other days. Today was a pool-running day. So I went for about 80 minutes, and on a whim decided to do a test jog when I got home - running up and down a hill. Had no issues with the downhill. So it seems that I need an hour+ of activity to work out of whatever this is, but it doesn't need to be running. Which argues a bit against a mental/anxiety aspect to this.
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Re: Muscle weakness and dizziness that improves as I run. [darkwave] [ In reply to ]
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Have you considered rest? Like taking some weeks completely off.
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Re: Muscle weakness and dizziness that improves as I run. [hobbyjogger] [ In reply to ]
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hobbyjogger wrote:
Have you considered rest? Like taking some weeks completely off.

That may be where I end up if I don't get other answers. But I really don't think this is a training issue. For one thing, it flared too abruptly. I'm also familiar with overtraining, and this just doesn't feel like it.

I do take week-long breaks 2 times a year - my last break was in late June of this year. For my breaks, I don't lay in bed all day, but I do not run or do anything intense. I'll do a bit of pool-running, some gentle yoga, stay up too late reading a book, sleep in and play with the cats, etc.

I had planned to run my last race in November and then take my next training break. If things don't improve quickly, I may call it a season now instead. But I'd like to get some medical insight first, and I'd rather not change too many variables while getting checked out.
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Re: Muscle weakness and dizziness that improves as I run. [darkwave] [ In reply to ]
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I'm no expert but if you have to run for an hour to get rid of dizziness/off-balance and your quads have gotten 'noticeably weaker', your body is telling you something and I don't think it's 'keep pushing'.
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Re: Muscle weakness and dizziness that improves as I run. [darkwave] [ In reply to ]
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I would do some labs just to make sure there isn't a glaring deficiency. After that you could escalate up the chain and see an ENT Doctor if that's something you want to do. I think looking at sleep, diet/nutrition, stress, recent training load (number of workouts/races), all make sense.
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