Does fibro cause higher chance of migraine or consistent headache?

squaregirl

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Joined
May 19, 2021
Messages
15
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DX FIBRO
Diagnosis
04/2021
Country
US
Asking this question because I noticed the worst symptoms fibro gives me deals with headache and neurological disturbance (many unexplained things). After having a highly sensitive MRI (normal results with a white matter intensity the neuro believes is not a real lesion) and being assigned amitriptyline, I noticed an improvement in the headache/head pain. Initially, it got in the way of me doing exercises, like plank pikes and leg lifts etc. So I stopped and started letting the medication work and went back to walking. Now today, I noticed that my headache is back (with weeks prior of migraine-like symptoms phantom smells and visual distubances) and brought on by brisk walking, like an exertional headache. Not sure if something triggered the headache/migraine but just a night ago I went to bed early because I had intense pain over my right eye like headache/migraine. Does anyone find that their fibro flares in different ways throughout the body? It feels like I have a permanent underlying headache/migraine that can flip on for reasons I am still trying to identify.
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Hi squaregirl,

As far as I understand, headaches are a pretty common symptom of fibromyalgia. I've also experienced visual disturbances during bad flare. As far as phantom smells, someone posted a while back about being able to smell smoke all the time, although this is not a symptom that I've come across otherwise. Perhaps others here will be able to share similar experiences.

If you're doing plank pikes and leg lifts, it sounds as if you're used to doing pretty intense workouts! I can share my experience of this, as I used to be very athletic - a go hard or go home type :) I can see that your diagnosis is pretty recent, so I fear you won't want to hear this, but for those of us who have spent a lifetime pushing through discomfort, it can be vital to recognise that fibromyalgia likes to put the kibosh on this approach. That doesn't mean you can't be active, but probably - as suggested by your headaches flaring - you'll need to go back to the drawing board and experiment to find out where your new limits are, and what causes overexertion-related flares. Sounds like you've already started this, but thought it worth saying: run with that instinct!

I used to weight train a lot, horse ride, run, cycle, etc. Looking back, I can now see that my fibro symptoms had gradually been ramping up over several years, but when the full manifestation finally arrived, I started having real trouble doing anything active. If I went to the gym and trained the way I used to, I'd feel like I'd been hit by a truck for a week. The more I tried to push through it, the worse my symptoms became - until I eventually hit the wall and wound up in bed for months. As I started to recover, I managed to get a handle on things by building up very slowly to see what my body could tolerate (as well as making a lot of other changes in my life.) This started as walking 10 minutes a day, then progressed to walking or swimming 20 minutes a day and doing ten-minute bodyweight workouts. Eventually, I settled at walking around 45 minutes, and also switched out heavy weight training for doing work with lighter weights - trying to find obscure exercises that could challenge my muscles without the need to pick up such big hunks of metal!

I still have to listen very hard to my body. If it tells me it doesn't want to move, then I don't force it. The frustration of this took me a while to get over, but the results have been worth it. I suspect that if you can try to find your own sweet spot it may help you manage your fibro symptoms - including your headaches. Perhaps try keeping a symptom/activity diary to pin-point potential triggers. I hope that's helpful - sorry if I've jumped in on something you're already on top of!

I hope your headaches improve soon 🌻
 

squaregirl

Member
Joined
May 19, 2021
Messages
15
Reason
DX FIBRO
Diagnosis
04/2021
Country
US
@Jemima, I appreciate your response! I finally found the time with my busy work schedule to respond. You said something that I had yet to search for and that is the phantom smells. OMG! I do smell burning cigarette smoke out of nowhere and realize that when I get this, typically a terrible headache will follow, for days. I meant to state that the high intensity exercise I engaged in earlier this year felt like it triggered this migraine/headache pattern I have. When I had my first bad flare of Fibro in January, it happened during a stressful time in my life and I just started a body weight strength training program to get fit. It seems like this was the right time to set off and further worsen this pain cycle of Fibro. So I have not done any floor exercises or anything that will lower my head and cause an increase in pressure to trigger a headache since then.

Only recently, like in April/May I started back walking, trying to get 4-5 days of exercise typically 3-5 miles depending on how well I feel. I made the original post here to see if even mild exercise like walking can exacerbate Fibro symptoms such as migraine/headache? Recently, I've felt that walking can intensify the headache pain. Reviewing my triggers include certain foods and a disruption in sleep due the discomfort my menses causes and that seems to be enough for migraine/headache flare. Without fail, as you mentioned, which I will search the forum for is the cigarette smell, I think I understand better now that this is actually a forewarning I will get a headache etc. Thank you for this and all of your contribution here as I see you regularly provide honest, helpful, and friendly advice on these matters. It makes me feel less alone in learning about myself and advocating for myself!

I wish you the best!
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
It's a pleasure to be helpful when I can muster it. I'm so happy to hear that being here in the forum is making you feel empowered - we all need more of that!

I suppose, as weird as it may be to experience strange smells, having a warning indicator that a migraine is coming might be kind of useful. Great that you're pinpointing triggers already. There are studies that have shown some women with fibromyalgia experience worse symptoms around their period. Another fun issue to navigate! I hope you continue to find new clues to how to get a handle on those migraines once and for all.

Good luck, and thank you. I wish you the best too 🚀
 

squaregirl

Member
Joined
May 19, 2021
Messages
15
Reason
DX FIBRO
Diagnosis
04/2021
Country
US
@Jemima yes, you are right about that. I think I should extended my food trigger list to a behavior/stimuli trigger list and stay diligent about adopting the same pattern everyday. I never thought my period could become a problem because at my worst with the Fibro flare I could not tell if it caused a worsening of symptoms etc. That said, just grateful I am here now and can iron out how to look at this weird syndrome. Also, I was going to ask, I heard CoQ10 is a great supplement for fibro and migraines. Have you tried it and if so what brand do you recommend?
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
@Jemima yes, you are right about that. I think I should extended my food trigger list to a behavior/stimuli trigger list and stay diligent about adopting the same pattern everyday. I never thought my period could become a problem because at my worst with the Fibro flare I could not tell if it caused a worsening of symptoms etc. That said, just grateful I am here now and can iron out how to look at this weird syndrome. Also, I was going to ask, I heard CoQ10 is a great supplement for fibro and migraines. Have you tried it and if so what brand do you recommend?
I take CoQ10 every day with Alpha Lipoic Acid. Together, they make a big difference to my brain fog! I'm currently taking a 500mg soft gel from a brand called Ved Healthcare that had great reviews on Amazon UK. It's not a particularly expensive supplement to produce, so I don't think it's advantageous to spend a lot on it - I'd look for a reputable brand with reviews to back it up. I hope that helps!
 

NY Farmwife

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Joined
Jul 26, 2021
Messages
10
Hi. Have you had your spine x-rayed? Did you have an MRI? The first step is to be sure that this is just fibromyalgia. Fibro is probably the cause, but you should rule out anything that could actually be fixed. Before I had to go on disability, I had to get out of my car twice during my 1 hour commute. I'd place a foot on the back bumper and stretch my whole spine and leg, then repeat on the other leg. If at all possible, get up and stretch every 20 minutes. Do shoulder rolls and turn your head left, right, up, and down. And invest in a really good office chair, one with armrests. Explore the new desks that let you go from sitting to standing, too. Make sure that the top of your computer screen is at eye level so you're not looking down all the time. Scroll up more often so you're reading from the top half of the screen to save your neck muscles.

(After my most recent MRI. the nurse practicioner at the pain clinic told me that when I lost control of my bladder, I would need spinal surgery. That day, I looked up spine surgeons. My surgery was a blessing. For the first time in 45 years, I could stand up without feeling excruciating pain at waist level and less intense pain throughout my lumbar spine.)

Find out the root cause of your pain. Then you will be able to treat it.
 

squaregirl

Member
Joined
May 19, 2021
Messages
15
Reason
DX FIBRO
Diagnosis
04/2021
Country
US
@NY Farmwife, my apologies for the late reply! I had an MRI of the entire spine and it's normal except for Tarlov cysts being present in a few places. I had an appointment with every specialist including a rheumatologist who is treating me for fibromyalgia and monitoring me for progress under his treatment and to be sure no other autoimmune disease is afoot. Right now I just take it easy on the exercise and prefer to walk 4-5 miles a few days out of the week because I sit too much during my day job and need the Vitamin D. I think I need to address to my gut health because that is where the immune system and neurotransmitters are made, however a functional medicine doctor is too expensive. I've gone on to read Dr. Alex Vasquez's work on treating fibro with functional medicine and I am also reading Beat Autoimmune Disease by Palmer Kippola and making some changes I can see either slight improvement or trigger of symptoms. I hope to find the root cause of all of this and beat it to hell very soon! LOL!
 
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