Ok, so I have had fibromyalgia for about 6 years now. I am also prone to bad migraines. Some of which are so debilatating that my head apins, I see double and I start vometing. I take what pain meds I have but as everyone know, you can’t treat fibro with pain meds. This ia a problem for me. I have been off of Norco for about 8 mos now. I take yltram regularly so I am functional and so far, none of the meds that might treat my fibro such as Lyrica, Cymbalta, Savella, Cylexa, gabbapentin etc. work. They seem to make matters worse. I have a very physically demanding career that I was llicensed for 6 years before the symptoms started and I can’t just get in to a desk job. My problem is that with the finro. I feel my migraines about 10x more than your standard person. Usually when I get the bad migraines, the Ultram does nothing to help it and I can’t ask my doctor for help because if I ask for anything stronger I am inmediately cut off. I can’t go to the ER for relief because I’m treated like a drug seeker. So basically where ever I go to try and get relief I am treated like a drug seeker because I can’t proove my pain. I had a thought that if people with actual documented fibro. had a card or something from their doctor that they could present to the ER stating that we have actual fibro and its ok to treat us, wouldnt that be an easier way for the hospital to sort us apart from the actual drug seekers? I don’t like the idea, but with all the new federal regulations the DEA put on the hospitals, doctors pharmacies etc, it makes it close to impossible to to get the necessary relief when needed. I am a very hard working wife and mother of 2, I am not an addict (and trust me when I say that I really am not a fan of narcotics or the rebound headaches they can sometimes cause, accupuncture doesn’t help either ), but when I get these debilatating migraines, narcotics so far, are the only thing that take it away. I know there are all kinds of moms getting hooked on drugs after being treated for some kind of injury or surgery, but we have chronic pain and we have to live with it for the rest of our lives. Don’t we deserve to be treated with dignity while coping with the pain instead of being accused of being a seeker right off the bat? I have had ER doctors out right accuse me of being a drug seeker while im in tears n vometing. They assume I’m in withdrawl and trying to get a fix. I can’t live the rest of my life like this. Any comments oe ideas are very welcome.
I don’t know if this will help you but I will tell you my experience. My chronic pain started after having back surgery twice and then was diagnosed with spinal stenosis all up and down my spine plus bulging disks. I started having pain everywhere the first pain dr. I went to who did my cortisol injections said I had bursitis right away. Then I started seeing another pain dr. (because of insurance reasons) and he prescribed me OxyContin ER , needless to say I was really scared to take them at first because of the bad rap they seem to have had. But when I started taking them I was really pleased with the affects they had and I only had to take one pill in the morning and one at night. I wasn’t feeling all dopey and I didn’t feel the need to have to take more. When I was taking other narcotics I felt like I had to keep taking them because the pain came back so quick. I also forgot to mention I got migraines something terrible to the point where I was puking and could barely move. I don’t get them so much anymore. So my pain dr. did end up telling me he thought I had fibromyalgia and he wanted me to see a Rhuematologist. So I found one, and she ran all the nessesary test and said I definetly had fibro. I had to tell her what the last dr. had prescribed for me and she has been prescribing that since. I have been seeing her for about 6 years now and I’ve never had a problem. I did have to increase my dose through the years a bit. But I’m ok where I’m at. It seems like I have been suffering more this year though. I started taking some muscle relaxers too. I only take them when I need to. I hope this helped. I hope I didn’t bore you with such a lengthy reply. But my point is that if you have fibro. You really should be seeing a Rhuematologist for that. They specialize in it. And also, all those symptoms like your migraines all stem from having fm. I’m on disability now, but if you have to work (God help you) you should be on something so you can function. And the extended release oxy’s really work without making you so dopey. As long as your not on a high dose.
No guarantee that this will work for you , but definitely worth the shot. A neurologist I was seeing before , when I was having migraines on a regular basis, said that some women have a vitamin deficiency of B2 and magnesium glycinate. He recommend 400 mg of each. The magnesium glycinate co!es in 400 mg and can be found in specialty health stores such as GNC or I found it cheapest from Swansens on line. The B 2 can be bought about anywhere. It comes in 100mg form, so you will have to take 4 of them. I have rarely gotten a migraine since, and when I do it is very mild.It is only once in a blue moon. I think those are only induced by stress.
Thanks for the advice Lori and Aimee Rose. I will look into seeing a rheumatologist. I have been theough 5 different pain mgmt doctors all of which stopped prescribing any kind of norco, oxy, or even codeine because of the strict ridged laws the DEA has placed in the doctors out here in California. My experiences so far have not been positive. My migraines are triggered by stress. I think the fibro is part of it, but I get these terrible muscle spasms in my neck and shoulders which brings them on. My last pain mgmt doctor insisted that my migraines were not related to my fibro at all and thats its all stress related. All I have to do is reduce the amt of stress in my life and my migraines will go away. Hmmmm, now why does that seem like such an easy solution? Well maybe because its not easy at all. It’s a vicious circle. The fibro brings on the stress which is compounded by working 12 hour shifts on my feet at night. If I have a particularly bad night the chances of waking up with a migraine are pretry high. If I wake up with a migraine, it is usually a very agressive one that will just keep me down all day. These are the ones that land me in the ER. I love it when a doctor tells me how I’m feeling. They totally disregaurd what you are saying and automatically accuse me of seeking. If I call my doctor and ask for aomething a bit stronger to help with a bad migraine, he will have his office call me, schedule an appt. For a week later and then do a urine teat on me, take me into the office, lecture me and tell me that he can’t help me because he will NOT prescribe anything for pain anhmore because I had to audacity to ask for something stronger to treat my migraine. He told me he has done all he could do and released me back to my GP. This was my pain mgmt doctor. What kind of pain ngmt doctor wont help you with pain and accuses you of “seeking” because you had the nerve to ask for something stronger to treat a migraine and save you a trip to the ER where I will further be accused of “seeking”. I am tired of being treated like this, I would like to, for once be treated with dignity and reapect. Not everyone who takes pain medications is going to become totally addicted and become a junkie. You treat the symptoms based on what you are being told and what you observe. You don’t accuse your patients of “seeking” and tell them out right that you don’t believe they are in pain and they are not going to give you any narcotics to treat the pain. This has all happened to me. Fibro has ruined my life and as much as I have tried to make adjustments and balance my work and my life at home, but the flare ups and the migrainea are getting worse as is the sense of hopelessness. Thanks for listening to my long ranting and ravings. I hooe I didnt bore you!!!
I really feel for you, I've had severe migraines for over 35 years, way before fibromyalgia. Migraines are a distinct condition by itself, it is not caused by fibromyalgia but many with fibro also have a history of migraines. And migraines are NOT just from stress, though stress will make them worse.
You are not going to the right type of doctor to treat migraines, you should be going to a neurologist if your Family doc can't take care of you. And opiates are no longer the best treatment for migraines. Twenty years ago, there was not much that treat migraines well, once a month would be in ER and only rx was shot of Demerol to knock you out and hope when you wake up the migraine is gone.
Then a miracle happened and the medication Imitrex (sumatriptan) was released. It could treat migraines already in progress and worked great in the majority of people. Have you ever tried Imitrex? For me, a migraine that used to send me to ER now takes 45 min in a dark room with cold compress and the Imitrex to disappear. Did you ever try any of the triptans?
And you are right about how difficult for real pain patients the DEA has made things for us in CA. Even outpatient, I was sobbing in my doctors office last week because of how difficult it has become.
Hope to hear from you soon.
Hey Star, thanks for the input. I was seeing a neurologiat, buy my ins recently changed and my current doctors are no longer “in network”, this makes me apprehensive as my GP is no longer covered and I have been seeing him for over 10 yrs. So i have been paying cash to see my GP even though I have ins. I have trust issues when it comes to the doctors treating me. I know that I am going to have to see a new GP for a while to just to get referred to a neuro. I just really dont want to have to go through explaining all my symptoms all over again to a new doctor. But thats an issue I just need to get over. As for the Imitrex, I have high BP which is contra indicated. I take atenalol for my BP but the second a migraine hits, my BP shoots through the ceiling. I tried an alternative for people with high BP that my last neuro prescribed. I cant remember the name, but it was a powder that i mix with H20. The first migraine I had after it was prescribed I tried it. It worked at first. I was really excited about it, but 15 mins later, it was back with a vengeance. My doctor basically told me that I have a highly untreatable form of FM and that I just need to keep trying new things in hopes that we may find something that helps with the symptoms of both the FM and the migraines.
I had another bad migraine today, it had me vometing and I missed out on my ACLS class for work. I had to sleep it off like a hang over in hopes that I woul wake up with a lesser headache.
These dang migraines keep taking me out to a point that I am screwing up things at work by missing manditory classes and shifts.
This condition has ruined my life. I have tried to make adjustments to cope and accommodate this condition in my life but every time I try to get my life back on track, I get taken out by a severe flare up which usually lands me on disability. I have a husband and 2 kids to take care of and support, I can’t allow to keep me down and out.
I work in the medical field, I know there isn’t a cure for everything, but with all the medical advances and tech, why haven’t they been able to figure out what causes FM and an effective way to treat it?
Oh, April, I am so sorry. My migraines were horrid also, I too was in the medical field. I had terrible vomiting with the migraines, I remember once not being able to find someone to cover for me and I had to stop the car to throw up on the side of the freeway. I’ve also had the same experience in the ER when I had run out of imitrex (which used to cost $35 a dose and the pharm company kept its patent for 18 YEARS!!)
You definitely need to get back with a neurologist. I went to a pain management clinic once and all they wanted to do was spinal injection of steroids. Doc said “Get off the opiates” and when I asked him how to do that he just mumbled and walked away.
One idea is to get copies of your medical records from both your current docs and take them to your first appointments with the new ones. I think that would help a lot. I’ve been at the same outpatient clinic for over 12 years with same doc for over 8 years, so I know how you feel.
I cannot imagine having both untreatable migraines and fibromyalgia at the same time. The migraines ruled my life until Imitrex and the fibro forced me into retirement. Can you make sure that you have a private disability policy through work? And also be careful of cutting your hours before you file for disability (I mean if) as the reduced hours may affect your award.
I’m guessing you are an RN, I have a professional lecture series to share with you, it’s 3 videos from a cutting-edge fibro researcher and I found it very illuminating. Fibro is really a brain disease (like migraines and depression) and as you know medicine has only been working on diagnosing and treating these for a few short decades. Here is link to first part of lecture then you will find the other 2 right there. Let me know if this link doesn’t work, I’ll figure out another way to send it.
Oh. And migraines DO get less severe the older you get, don’t know your age but just keep that in mind.
Hey Starr, thanks for the info. I’ll deffinetly look into the lectures. Just for basic info, O am 37 and I’m a Respiratory Therapist. I have been.working for 10 yrs ar a hospital but my condition took me out. I had to resign and go on temporary disability. Financial issues pushed me back into work despite my condition. I teied to find a job here in OC Cali, but Southern Cali only wants new grads so I have had to take a travel assignment in San Luis Obispo which is about a 4 hr drive for me. I drive out there, sleep on a sofa couch in a surprisingly nice converted garage that I rent while I work my 3 days and then drive 4 hrs home. This is particularly hard on me. By the time I get home, it takes me a few days to recover. But, you gotta do what you gotta do to support your family. I juat feel that working like this is going to kill me.
As fot my meds, I have not been on Opiates since last sept. Its nice not havi g that loopy feeling and then the rebound headaches, but when the migrains and/or flare ups kick in, it’s all I can do to avoid going to the hospital. I seriously hope they come out with something new soon. Maybe as time goea by, we will find something that works on me.
Wow, you sound like me…I lived in San Diego and had to drive to Palm Springs to work two days a week, stayed over at a hotel every week. SO stressful.
You know, I wonder if you really cannot take sumatriptan due to your high blood pressure. The physician instructions says not to use in cases of “UNCONTROLLED high blood pressure.” But if your HTN is under good control, then you might be able to take it. Everyone’s blood pressure goes up when in pain. Maybe one of your docs would work with you to see if you can actually take imitrex or another triptan safely. Like take a dose in the office with BP reading before and at intervals after to see if your blood pressure becomes dangerously high or just elevated. Compare to BP during migraine with no medication. After all, if you can take the a triptan and get rid of headache, your BP will be back to normal within a few hours and your migraine will be gone. Your quality of life is so impaired right now, I would really explore this option. Would your GP be willing to try this? I would ask.