Severe headaches and FMS

[bamamom02]

For those that have FMS, do you have constant, severe headaches?

I've been having severe headaches for almost 3 years now that occur daily.  I have a history of migraines but I don't have a migraine everyday:  the headaches I have are like a migraine as in the level of pain but I don't have my typical migraine symptoms (sensitivity to light/noise, nausea and vomiting) with them.

I started having these headaches several months after I received my FMS diagnosis and I've tried 4 different medications that are supposed to keep you from having migraines that you take daily (for preventative treatment).  My neurologist doesn't really know the cause despite having a couple of MRIs done and my internist is now at a loss.  So far they don't know what would be causing these and they don't think FMS would be responsible.

I'm awaiting a referral to the major medical center in my state but just curious if any other FMS patients have severe headaches or if I've been misdiagnosed or I have something else completely.  Please forgive me if this doesn't make sense-I've got a blinding headache right now and I just can't think.

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56%

 (13) 

Yes, I have severe, constant headaches with FMS

17%

 (4) 

I do have headaches but they are not constant nor severe

4%

 (1) 

I don't have headaches with FMS

21%

 (5) 

Other (please explain)

23 Members voted

[Ruthy66]

I get terrible headaches with Fibro.  Almost like migraines but not quite and my sinus' absolutely kill me.  This can occur with or without a trigger but it happens a lot more when I don't get enough sleep.

[PlateletGal]

I have CFS, but haven't ruled out secondary fibromyalgia (I just see no need to since I'm already on treatment that covers that). I know severe headaches are also common in CFS patients and I frequently get massages and take Relpex as needed. The massages have helped a great deal... I think they've actually warded off more headaches. The massage therapists think I have fibro too because of the pressure points in my neck and back and how my muscles are.

[VaBreeze]

I chose "Other".  I did suffer with migraines as a youth, but haven't had them for years (knock on wood).  I seldom get headaches...sometimes i'll have a shooting pain on the side of my head, but it doesn't last long.  My migraines would come from tension, as I always got one when I was anxious (even if it was due to a good event).  

Headaches are often difficult to treat, esp. if you aren't responding to medication.  Anxiety, stress, high-blood pressure or sinus problems can lead to headaches.  I hope you find relief soon.  Maybe the massage method PlateletGal uses would help...it's certainly worth a try.

Take care and feel better soon.
*Breeze*

[PlateletGal]

One tip on getting more for your money. If your city has a school for massage therapy, contact them and you can save a bundle on your massages !

Also... one thing that helps with chronic headaches is MAGNESIUM. I purchase the powered form because it absorbs easier.

[FurballsMom]

I chose other, because I don't have the official diagnosis of FMS, but my pcp did say that I was borderline many years ago.  I have many of the trigger points, but I don't have the rheumatoid factors.  I have nearly all the symptoms of FMS/CFS, too.  I finally got to see a neurologist, starting this past year.  I went in with symptoms that made me think I was having mild or petit mals.  That was when he told me that what I was describing was mild to moderate migraines.  I don't always have the actual pain in my head, but I have the associated symptoms, along with a definite aura and the nausea and dizziness.

Thank you Platelet Gal for mentioning the magnesium.  I am taking magnesium, but not the powdered form.  I'll consider the powdered form at some point, after I talk with my neurologist.  He has been going easy on the prescription meds, because I have sensitivities to many prescriptions.  I can't take Tylenol because I get weird symptoms with it, not just dizziness.  And, I certainly don't need any addtional dizziness with these migraines.

[bamamom02]

My hubby told me someone he knows mentioned to him that he takes magnesium and it has helped.  I'm pretty much at the point that I will try anything.

How many milligrams should be taken or do I need to speak with a pharmacist?

[buriedinfur]

The only way I've really had any luck partially controling them is through the book 'heal  your headache'. That is a diet first modification/medication second way to controling it.

Still have them though - but they're sure as heck a lot worse if I don't follow the plan. I'm on several things to increase my migraine threshold.

[patsy10]

My headaches are not as bad as they used to be but still there. I used to have migraines several times per week.

[Phoenix177]

I clicked other, in the beginning of FMS I had uncontrollable migraines. My eyes felt like they were going to burst while my head was building so much pressure it was going to explode. All rx failed to help me for the migraines or other FMS sx. Luckily, I live in 1 of the 13 medical cannabis states. From the 1st time taking it; I felt the pain leave my body. my pain level went from a 10+, on pain scale, to a 5 within a few minutes and continued to drop. I could feel the pain wither and die inside of me, and was replaced with something I have not felt for an eternally. My body began to relax; my mind began to clear. I began to realize I had been given a key to unlock the shackles of pain. The migraine, which had become one of my masters screamed in contempt. For the first time in over a year, I did not have a headache of any kind. my muscle spasms reduced and finally stopped. I could get refreshing sleep and eat (as well keep it down). that was about 8 years ago.

Now days, I don't take 18 pills a day anymore; I take one pill at night and medical cannabis. I barely have migraines or FMS sx anymore.  I still have to be careful, remember to takes breaks, don't do too much stuff at once. For the most part they are under control.

[ladygeegee]

I had severe headaches until last year when I started taking cymbalta. I still get them but now maybe a few times a month rather than once or twice a week. I also take melaxicam for joint pain and stiffness along with vit d, b-6,b-12 and fish oil. When I do get one I can just take excedrine and lay down. I have an auntie who says she's had a headache everyday since 1969.........So I pray everyday for something to work. I don't want to live with a headache everyday for forty years.  Feel Better .

Sweet Hugs
Gee

[jazzmin1986]

i have headaches for a long time now.  the doctor im seeing now thinks i have had fibro for a long time so maybe i do... the pain i have is getting worse and its to the point i cant hardly stand it.  i choose 'other'  because im not sure if i do have it or not.  but my headaches are so bad sometimes that i will actually cry.  but i dont think they are migranes because like someone else had said im not sensitive to light and some other things that relate to migraines.  good luck to all and be pain free !!!! =)  
                                                                                                           jazzmin1986

[VaBreeze]

Heaches are bad enough...migraines will make you feel like you are dying.  Like Phoenix stated, the pain is so bad it seems your head will blow off.  Extreme sensitivity to both light and sound and vomiting are all parts of a migraine.  Even a pin dropping can cause excruciating pain.

I'm so thankful that I don't have them any longer, but vividly recall when I did.  Worse part was not being treated properly for them and having to endure one after another.

I pray that everyone suffering can find relief...no one should endure this type of pain when there are medications available to treat it.  

Take care.

[Phtartist]

I had severe migraines avg. 4 times a week. I take topamax and since I started 5 years ago the migraines stopped but the headaches persist.

I get several different kinds of headaches rangeing from a pain level of 4 to 12. Ten being the usual highest.  Some include the center of my back up, some include my shoulders, some include my neck and face which is the myofascial layer of muscles that burn and tighten. The headaches are always in conjunction with a feeling like my brain is clogged with an icy hot substance.

Getting a massage is a tricky thing. Getting an incorrect message can worsen an area instead of making it better, so be careful who you go to.

Norephinephrine reuptake inhibitors are to me the best help I have found.  These come in combination with Dopamine as in Wellbutrin or Serotonin as in Cymbalta, Effexor and the new med just approved by the FDA Savella. These help with depression also, only if you have it, I do.  I don't tolerate SRI's so I'm trying Savella right now which focuses more on the NRI aspects plus I take Wellbutrin which is a DNRI. I do not have fatigue much even though I have CFS thanks to Wellbutrin. Serotonin helps with depression and Nor. helps with pain centers in the brain.

DNRI=Wellbutrin
SSRI=Zoloft etc.
SNRI=Cymbalta, Effexor
NSRI=Savella

RI=Reuptake inhibitor, which means the med keeps these neurotransmitter chemicals where they are needed in our brains, so they don't dissapate.

When headaches are bad I take Vicodin or Zydone, a low acetominophen vicodin, and Soma a muscle relaxer/pain reducer for muscles. This combo works well for me.

I hope I've helped.

[supermomma531]

I do get headaches and migraines but not all the time. I get them in spurts of a few days or weeks at a time. It is extremely hard to get rid of them if I can't get rid of them when they first start. I cannot function when having a migraine.

[Job777]

Here is one for the books.  I had daily migraines/bad headaches with nausea for more than five years until I discovered that there were knots (I think, from fibromyalgia) in the shoulder on the opposite side from the place in my head where most of the headaches started.  I began leaning on the most painful spot(s) in that shoulder.  As soon as I find the right spot, the migraine immediately stops.  At first, it took about fifteen minutes of leaning in what I call my "doorpost therapy" against the wall or doorpost until the migraine went away completely.  I've been a year and a half without any migraines, except the occasional "maintainance leaning."  One woman on the internet said that she had "muscle migraines."  If you have that kind of migraine and have sore shoulders or neck, try "doorpost therapy."  The price is certainly right! I hope God relieves yours the way he has mine!   Job777.  

[mwp921]

Yes, yes, yes.  My chronic daily unilateral head pain was the final straw that landed me in the Neurologist's office after seeing just about every other specialist, short of a rheumatologist & psychiatrist, and couldn't get any sort of diagnosis as to what was causing my problems.  He explained that even though what I was experiencing was daily, only on the right side, and chronic, it was in fact migraine disorder.

I was on Lexapro when I was diagnosed with Migraines and Fibromyalgia.  At first my Neuro added Nortriptyline (sp) to try and ward off the headaches but it did nothing except keep me awake at night.  Then, once he was finished ruling out other neurological problems, he switched me to Savella and told me to stop the Lexapro immediately.  From Day 2 to Day 9 on the Savella I was headache free for the first time in a year!!  My headache returned on Day 10 and is still with me today, Day 11.  I think it is related to the fact that I've titrated up to 50 mg twice a day.  Not sure why, but I went back down to 25 mg twice a day tonight and we'll see what happens tomorrow.

[PlateletGal]

I recently started seeing a neuro-chiropractor and I am very happy with the results so far. I will try to remember to keep everyone here posted.