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Adrienne Dellwo

Migraines in Fibromyalgia & Chronic Fatigue Syndrome

By October 10, 2013

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When you tell someone, "I've got a migraine," it's almost universal - they cringe and, quietly and gently, tell you they hope you're better soon. Few pains are as universally recognized and respected.

For many of us with fibromyalgia and chronic fatigue syndrome, migraines just come with the territory. In fact, new headaches or changing headache patterns are considered symptoms/overlapping conditions in us and are part of the diagnostic criteria.

For me, migraines were just part of life starting with puberty. Then, fibromyalgia hit and I had a stroke of luck - my "changing pattern" was that I ceased getting migraines entirely. At least something got better, right?

One of the ways I knew my fibromyalgia was in remission was because the migraines came back. They haven't been as severe, lengthy, or common as they were, though - until now.

Currently, I'm on about hour 85 of a doozy. The first two days, I basically slept as much as I could and laid on the couch. The last couple of days, I've been able to function a little bit in between really bad spells.

Even more debilitating than the pain has been dizziness. Moving my head too quickly, or a fast moving image on TV, really gets it going. I haven't dared to drive at all. I haven't been able to do much of anything, and I'm writing this post only because I have certain minimums I need to meet.

I this isn't better soon, I'll need to get in to the doctor and maybe get some injections in my neck. It's tough to get to the office when you can't drive, though!

Here's more information about migraines in us:

Do you get migraines? What seems to trigger them? Does anything help? Leave your comments below!


Photo Adam Crowley/Getty Images

October 10, 2013 at 11:37 pm
(1) Mary says:

I’ve had migraines since my 20′s. They were on & off, ok & debilitating. Now that I have Fibromyalgia I have a migraine every day. It’s horrible. My drs are working on adjusting my meds, I’m trying to deal with them, as they seem to get worse as each day passes.

October 11, 2013 at 12:23 am
(2) HypoGal aka Lisa says:

I tend to have intense or extreme headaches when my cortisol is low. I have secondary AI by way of Sheehan’s Syndrome. Thank you for all of your post :-)

October 11, 2013 at 1:42 am
(3) Bobbi says:

Also suffered from migraines since shortly after puberty. Mostly weather change related, a new high or low pressure system can just send me into a migraine that can last a week or more depending.

Presently I am typing this wearing very dark sunglasses at work. I’ve been wearing them since an optical migraine started at the beginning of June. My eyes are so light sensitive that stepping outside on a sunny day can send me into a full-blown migraine. A loud noise can do the same. I am taking topiramate to prevent migraines and Imitrix to treat them and I am currently on day 3 of a killer migraine caused I think from our weather going from rainy to sunny to foggy. Nothing is touching it for pain. The Imitrix might as well be M&Ms. When I get home tonight from work I will be taking the last of my oxycodone meant for break-through pain. I hate to do it because of the unpleasant side effects but I need some relief.

The only time I didn’t get a lot of migraines was when I was stationed on Guam. I got about 2 a year, only when a typhoon was coming. If I had the means I’d move back there just to escape this unrelenting pain.

October 11, 2013 at 12:10 pm
(4) Nancy A. says:

I started having migraines when my CFS began in 1984 when I was 30. The attacks could happen anytime but tended to be menstrual migraines. I just turned 60 and I still take generic Topamax to prevent migraines, and this medication works very well for me.

October 11, 2013 at 1:33 pm
(5) Abot Bensussen says:

Xyrem has been giving me good, deep sleep for the last 7 years, and now my headaches are no longer migraines, and they don’t make me disfunctional.

Without good sleep I had daily migraines, and was bedridden most of the time. I can’t emphasize enough the difference Xyrem has made in my life.

October 11, 2013 at 5:52 pm
(6) Diana says:

Adrienne… I’m wondering why migraines diminish with Fibromyalgia? I’ve noticed I don’t get nearly as many as I used go. Very curious.

October 11, 2013 at 5:59 pm
(7) Mry G. says:

For those of you who are suffering from migraines, PLEASE get a copy of Dr. David Buchholz’s book, “Heal Your Headache.” He is a neurologist at Johns Hopkins. His diet recommendations alone have helped me tremendously.

October 11, 2013 at 7:50 pm
(8) Cynthia H. says:

I have had migraines all my life & I’m 48 now & they are worse…Fybromylgia hurts so bad daily..just got dosage increase on meds..I go pain management ever two months..

October 11, 2013 at 8:42 pm
(9) April Gear says:

I didn’t have migraines until 2009. I had symptoms of fibro most of my life. My doctor said the migraines were caused by female hormones. I take sumaptriptan as needed for them. I don’t think I could survive without it. My insurance will only give me 9/ month so I have to use them sparingly. I also keep an over the counter headache med on hand in case I need more than the 9 pills but those don’t work as well as the sumatriptan. You are supposed to take one then wait to take another one. 99% of the time I need two of them to get rid of the headache. I think that certain foods give me headaches too but haven’t figured out for sure which ones.

October 11, 2013 at 8:45 pm
(10) Mary Seroski says:

Adrienne, I’m so sorry you are suffering so much now. I hope your migraine diminishes quickly now.

I have found that being vegan has helped quite a bit in reducing the ferocity of my migraines and fibro pain.

Healing energies your way sweetie. You are such a wonderful researcher and writer.

Mary aka GeekyGranny

October 11, 2013 at 10:13 pm
(11) mary says:

I am having weekly or more odd events that I am having an eeg and mri to diagnose. I think they are ‘silent’ migraines. I feel odd and tense the day before they happen, I have an aura, ear ringing, and cascading ‘numbness’ throughout my body –generally happening when I am in bed. After this I have just a slight headache and pressure in my head–but also good old fibro fog. I’ve been able to control much of my fibro pain with meds, gabapentin, nortryptiline and celebrex.. plus some vitaimins.

anyhow I think this is migraine–and although it doesn’t have the horrible pain I remember from migraine when I was young–it has still got a debilitating aspect to it. This is a tiresome chronic illness, not much you can do but carry on and wait for the next thing.

October 12, 2013 at 7:24 am
(12) Stephanie says:

I have been getting migraines since puberty and I am now 44 years old. I suffer from FMS as well. I have been to several neurologists and have taken topamax and neurontin for over 15 years off and on and also tried various rescue medications. I recently stopped the topamax due to its in effectiveness but have increased my neurontin to 3000mg a day. I was just also recently prescribed elavil for the migraines. Haven’t started yet because it causes fatigue (like I really need that!) and causes weight gain. The emergency room has become my personal drive thru treatment for the more severe “brain burner” migraines. IV medicine is the only treatment that will work nowadays. I do take imitrex 100mg at onset of migraine and actually was taking about 3 every day because I have a constant migraine daily. Dr. said cant take imitrex like that due to the fact that it can cause a heart attack. I just recently got botox injections (31) in the forehead, head, neck and shoulders. Daily migraine pain has reduced dramatically and must do treatments every 3 months. My heart goes out to everyone who suffers from this debilitating ailment.

October 12, 2013 at 11:47 am
(13) Maria says:

I have been getting migraines and seeking treatment for them during my entire adulthood, and I am now 57. I got sick with CFIDS in my late 30′s. One specialist told me that I had both migraines and Chronic Daily Headache, the latter being a dx which has replaced tension headache.

I. I have tried many alternative and Western treatments, AND I have tried all sorts of elimination diets.
Two things have helped me. I go to a Pain Management specialist who treats me with Percocet pills and Duragesic patches. I know I have developed a tolerance to the opiates, but I am not addicted, and that distinction is important.

When the time comes, I will gradually reduce the number of Percocet and the strength of the Duragesic patches so that I can stop taking them without discomfort. I use them as directed. If I were an addict, I would be constantly increasing the number of pills I take, and what the clinic gives me would never be enough. Getting my pills would be the goal of my life. It is not. I do not get high from taking them. They just treat my pain.
I also have a neurologist who gives me Botox injections around my hairline and in the back of my neck. It’s important to have an experienced person doing this. I once had it done by a clearly inexperienced person, and I couldn’t move the muscles in my face for weeks (when I tried to raise my eyebrows, I looked just like a Vulcan. Nothing like amusing your friends and family). When done properly, this has helped enormously.

No preventive meds ever worked for me. And yes, there was a point when I was taking way too much Imitrex (sumatriptan) and Neurontin (gabapentin).

So I don’t know if those things will help someone else. I think this is a very individual thing. But if you’re going to try opiates, do them under the supervision of a pain management specialist, who is usually also an anesthesiologist. You don’t want yet another problem on top of what you already have.

October 12, 2013 at 5:46 pm
(14) Rebecca says:

Hmm, I think my migraines have gotten better as my other symptoms got worse too.

October 13, 2013 at 9:42 am
(15) Debra An says:

I guess I am lucky in that department as I only get migraines on occasions and not very often, Thank God! It may be because my narcotics could keep them at bay, as I do get headaches and when it starts bugging me, which it is usually accompanied by additional pain, I usually add one more Percocet for a total of 5-6 daily, with my Morphine SRT! Maybe one of the natural herbs I eat keeps them Migraines away, I am not sure, but it is a possibility! I also get my husband to give me an allover body massage which makes him want to have sexual relations, which an orgasm never hurts if I have a headache, as I seem to forget about the headache; then again maybe it is the massage beforehand! When I make my husband give me a massage, I make sure he gets all of those trigger points, any area that hurts and kneads them all out. I have found that if I put my finger on a painful spot no matter how much it hurts and keep applying pressure, that that spot if kept on their until I feel the pain fully go away and feel kind of euphoric, then that is when I release the pressure. If I release early the pain will not subside. I make my husband do this and doctors are amazed that I do not have those trigger points as sensitive as most people with Fibromyalgia. It hurts like hell, but it is well worth it to suffer a little bit to get relief for a longer while. The more we did this the less the trigger points bothered me! It kind of reminds me of having children all the pain for something wonderful and in this case it is lessened pain or no pain where it used to cause me pain!

October 13, 2013 at 10:12 am
(16) Debra An says:

Dear Maria and others, who suffer from pain,
I have been taking narcotics for years and as my Pharmacist told me, “You should be alternating narcotics, as not to have your body getting used to them, as if you stay on them for a length of time the narcotics will become less effective” I have noticed this with various medications that I have been on for a long period of time, like the Percocet, then they had to add Morphine SRT, but my doctor ended up neglecting me so the pharmacist never switched me, as he was supposed to! Before that I was taking generic Tylenol with Codeine for years and yes that gradually increased too! Over the years my pain has increased, which it could be to my extremely stressful life! Maybe even my living situation, I am not sure! Now I am trying NIPP for pain, which it does seem like it is helping but I was told that I will have to have multiple treatments, due to how high my pain has gotten! NIPP is a Non Invasive Pain Procedure Device. The NIP Procedure® has been successfully used to treat:
Back Pain, Cervical Pain, Sciatica, Pre/Post-Operative Pain Management, Migraine / Headache Pain, Complex Regional Pain Syndrome, Arthritic and Joint Pain, Diabetic Neuropathy, Depression, Insomnia, Fibromyalgia, Shingles. I was also told it helps with Low Blood pressure and it is great for me since I have had that problem for years!

October 13, 2013 at 4:54 pm
(17) Lori Grift says:

I have had migraines since I was a child. My mom never believed that I was having bad headaches so I just suffered with them.
I had them when I was pregnant.
I have them if I eat too much cheese, avocado’s, processed lunch meats.
I also have had fyrbo and chronic fatigue since I was young. I am going through menopause at 53 and I have been having those multiple day migraines. The down side for me is that I cannot sleep with my migraines.
If I feel one coming on I take Frova. It makes me throw up though. If I wake up with one full blown the Frova doesn’t work and I suffer for days!
I do not have health insurance and the clinic I go to doesn’t have pain meds in their pharmacy and they won’t write presciptions for them. So I suffer in pain! I have one emergency room visit for a migraine that I cannot pay for!
When I did have insurance I took Fiorinal for my headaches. It kept them from turning into a migraine and I stopped having migraines for a few years. I cannot get the Fiorinal because it is a controlled supstance.
I now take Proranolol as a preventative but it doesn’t seem to be working.
My doctor recommended trying Butterbur.
Also couple years ago I had a magraing going on eleven days. I had two sshots in the emergency room and nothing worked! Finally my doctor gave me valium and Vicodin and it kicked that headache out!
It’s really too bad that I have to suffer with this pain because I cannot get the proper medication!

October 13, 2013 at 5:21 pm
(18) Melody says:

I experience migraines 2-3 time per month. I used to go into a dark room and lay there in excruciating pain. My doctor prescribed Sumatriptan. When I see a wavy aura that is a sign that debilitating pain will follow in a few minutes. Therefore, as soon as I see it, I immediately reach for the medication. It cuts the pain before it starts. I try to take it easy the rest of the day.

October 15, 2013 at 12:32 am
(19) Gayle Brown says:

I have fibromyalgia and used to have one or two migraines per week for several years. About two years ago I started on the Paleo diet (mostly no grains, sugar or dairy) and haven’t had a migraine since. I also don’t have hot flashes nearly as bad since going paleo.

October 18, 2013 at 7:41 pm
(20) James says:

I was officially diagnosed with migraines, fibromyalgia & chronic fatigue in 1999. Yet, I was told that they had actually started years earlier. In the years since, my migraines have continued to be daily, just varying in their intensity. Over the last several months, the frequency of the real severe migraines have escalated. Sometimes, lasting for over a month or more. Needless to say, the energy expended to fight against the pain has made the fibromyalgia & chronic fatigue worse. The only way I knew to try cope with the pain & exhaustion was to limit my activity. If I needed to go the store or such, I would wait till after the sun was down, yet I would still wear sunglasses. Some would say I was isolating myself too much, but there was no other way to cope with this. Medicine does virtually nothing. I can’t imagine how those have it worse then me are coping.

November 8, 2013 at 10:39 am
(21) Michelle says:

Adrienne, I am really sorry that you are going through this. I hope you find relief soon. Sending my best :)

November 8, 2013 at 10:47 am
(22) Tina Stimson says:

I have had migraines since I was about 20. They come on at anytime and are very debilitating. I have to lay in a dark room, no noise and it is agony when I have to get up to vomit. This lasts about 24 hours and then the next day I am just exhausted and the following day I feel as if I have my head in a bucket of cotton wool. I have other symptoms while the migraine is in full swing, cant talk properly, auras and feelings of extreme dizziness. My Fybromyalgia is very bad at the moment and am going to the Rhuematologist soon to see if there is anything I can do to get rid of the pain, fatigue and basically start to live again rather than struggle.

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