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11 Replies
marci - August 8

I think I have fibro, but i am going to the dr soon. I have had allover muscle pain and twitching for about 3 months. I have also noticed a bit of ibs. My joints have not been hurting for the past couple of days, but my head and neck aches have gotten unbearable. it seems i constantly have a headache in the back of my head and deep pain in my neck, it esp. hurts if i move a certain way or something. is this fibro or could it be something worse? I also have muscle twitching alot and lately I have felt a small amount of tingling in the very tips of my fingers and toes. i am worried that maybe i have something worse than fm. anybody else have headaches this bad?


Ann-Marie - May 2

Hi Marci,

I too get really back headaches/neck pain and that was the original reason I went to the doctor. For me it is like massive electric shocks in the base of my skull which actually can make me vomit. Add to this the pain in between my shoulder blades and my headaches can get pretty horrific. I know it sounds a bit cliched but I have really found that relaxation and deep breathing have helped (painkillers stoppoed working yonks ago. I find that by relaxing my musles I can contol the pain a little more (a little!!). Hope you get some answers from your Doctor


jsh - May 3

It is estimated that 2% of FMS patients suffer from Trigeminal Neuralgia which can be extremely painful (WebMd says often characterized as the most painful condition seen in medicine today) TN is a wearing of the end of the Trigeminal nerve which is located at the base of the skull. The trigeminal nerve is the largest nerve in the head and branches off in three different directions in the face (hence the name "tri"geminal.) When this nerve is irritated it can send extremely painful, electric shock like, pain throughout the face, head and neck. Tingling and muscle twitches are very common with FMS, but consult your doctor for a final diagnosis. FMS is a diagnosis of exclusion which means if all other diagnostic tests return normal results then, given other symptoms that you may present with, FMS would certainly be a strong possibility. Ensure that you find a physician familar with the diagnosis and treatment of both FMS and CMS (Chronic Myofascial Pain Syndrome). Good luck and God Bless!


kevin - May 14

Marci, what have you found out? I have many of the same symtoms and will see a neurologist in a couple of weeks. Please respond!


marci - May 14

well, i went to my dr and she doesnt really believe in fibromyalgia (surprise surprise). they have done blood work twice and everything came back normal but i am still having headaches, now it is like my jaw hurts all the way to my temples and still my neck and back of my head hurt. my dr gave me a prescription for headaches called midrin which doesnt really help too much. i too would like to see a neurologist but i am kinda scared. i am thinking it is a tmj jaw disorder thing, probably brought on by the stress of worrying what is wrong with me! i am thinking of maybe seeing a chiropractor, maybe it will help. hope your appt with the neurologist goes well, i will prob end up going to one myself!


Lori - June 4

The type of dr you want to see is a rheumatologist. I have headaches almost all the time due to the tension in my shoulder muscles. TMJ goes along with the fibro. I have gotten marcaine injections in those trigger points, but this time they have seemed to worsen the condition. I feel like my head weighs a ton and the constant pressure is overwhelming. I find the response from jsh interesting...trigeminal neuralgia...may check into it. Hope you find a way of like to decrease your pain and symptoms!


Fjs - June 22

Well my dr said I am a drug addict.I have had a headache for the last 21/2 weeks that is killing me.It starts in the back of my neck and moves up in to the front of my head.And instead of me being able to just take 3 a day of my pills I had to take 4 the last few days of this mnth.That shows you that drs have no clue what pain FMS dose to you.And now he will not treat me no longer.Is it just the state of FL or is all Drs just heartless?I have had FMS for a long time.And have only taken a narcotic for 9 mths.Just take a couple extra And have a dr put a label on you like that.Thank God Jesus dosn't do that or heaven would be empty.


Cheryl - June 22

I have had terrible tension headaches for a long time. The muscles between my neck and shoulders gets tight, and my head pulses with pain. If I lay down, it throbs ever more. Ice helps to subdue, and my husband will massage my shoulders. Flexeril is a muscle relaxer that works well. I cut mine in 1/4's and take only what I need so I don't get too sleepy during the day when I have a headache. I have been on a self-diagnosed yeast infection diet because I believe all my muscle aches, insomnia, cravings for sweets, tooth sensitivity, and tension headaches are caused by a candida infection caused by a yeast overgrowth throughout my entire body. I was on birth control pills for 16 years and that can cause yeast to multiply out of control. I don't eat any forms of sugar, both fruit, artificial and regular sugar, no products that have yeast, and no products that have wheat. Yesterday I cheated and had several cherries and today I had a tension headache all day long. I'm going to get a script for Diflucan and Nystatin on Monday to kill the yeast I believe have eaten tiny holes in my intestine, causing small undigested food particles to leach into my body and cause all these problems. (That's what really happens.) The diet alone isn't enough but it does make me feel better as well as others I've talked to on this sight. It may not be for all, but for me, I can feel the difference. I only have to take 1/2 a Tylenol PM at night rather than Ambien now to go to sleep, so my sleep is improving. Also do searches on candida yeast on the net and read about all the symptoms. They are identical to fibro for some people. Read it and compare then watch what you are eating and see if you notice changes. I did. Good luck.


Lisa - July 13

I get horrible, sickening headaches, with neck pain and facial pain. The neck pain and facial pain are constant. My teeth, jaws etc. I have been told I have trigeminal neralgia. The headaches lasts for days and days and can make me vomit.


Mark - August 8

Hi All, Even though I fortuneatly dont suffer with the problems you discribe, I would like to add a similar story, My mother Noreen has suffered with neck problems for many years, last week without warning, she was struck down with a violent headache which she described like a bolt of lightening, she was immediately hospitalised and a series of tests including c.t scan and lumber puncture procedure followed, neither of which have showed any evidence of serious neurological disorder. Her headache has continued and she is still in hospital undergoing further tests, I will keep you all informed as to how she gets along, I fully intend to offer the information that you have shared to the medical staff caring for her. In the meantime I can only offer my empathy for what must be a very distressing condition.


katespups2 - December 28

Hi everyone,
I've had fibro for around 12 years,formally diagnosed 9 years ago. I'm seeig a neurologist and she has me on Cymbalta 60 mg a day,and Lyrica 200mg a day. This combination of drugs has helped the pain tremendously. For about the last two months I've had muscle twitching all over. The only way I can describe it is to say it's like when you're falling asleep at nite,and your muscles jerk and wake you up. My mom died of ALS and that has me a bit concerned,but it was not the type of ALS that runs in families,so I was thinking it could be the drugs. Anyone else have the twitching while on Lyrica and Cymbalta?


aharryman - January 2

Hi Katespups2: My husband was diagnosed with non-diabetic peripheral neuropathy but his symptoms sometimes mimic my fibro, but with numbness and burning pain to his extremeites. He takes 30 mg of Cymbalta 3x day as his pain management doctor prescribed. He does not take Lyrica. He jerks just like you describe, sometimes hard enough that it hurts me if he is too close. And definately enough to scare the ]?*& out of me if I am sleeping.



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