Wednesday, November 02, 2011 wld palm desert asks

Q: I suffer from chronic migraines as well as fibromyalgia and rheumatoid arthritis. How do you deal with the guilt regarding how your condition affects your family??

I just found this site. When I started reading other stories, I literally just started to cry. I didn't realize that I'm not alone. I am 46 and started having headaches in my early teens, which then turned into migraines. Now, after 30 years, my migraines range from severe pain, to issues with light, vision and smells, weakness on one side of my body, vomiting, etc.. Mine are definitely brought on by hormones, but by several other issues as well....stress, certain foods, any sort of alcohol, changes in weather, elevation, etc.. I also end up in the ER when I can't control the vomitting. I was also diagnosed with fibromyalgia and rheumatoid arthritis 10 years ago.

I take daily meds, use Botox, and of course pain meds. I live with ice packs on my head and heat on my back and neck. I had to walk away from a lucrative career 2 years ago. I then tried a less stressful every day type of job, but I still couldn't depend on my health. Plus, I have short term memory issues due to the meds, which made office work tough. Not only do people not get chronic pain or migraines, they have no clue how hard it is to function when you're on the meds. When I'm out and about, makeup and hair are always done. When people look at me, they don't understand what I go through because I look ok. When I have to admit that I'm in pain and have to go home, or I'm home and can't go out, people don't get it.

I know that I will never be able to hold a job again, as I never have a day without some sort of pain. Everyday starts with a headache....it just depends whether it turns into a migraine. Combined with the fibromyalgia, arthritis and now scoliosis pain, I feel like my life has literally been taken away. I only sleep for hours at a time until the pain meds wear off, which makes getting up in the morning hard. Some days are so painful, I can't function and never get dressed. Then I have a day or two when I'm ok and can get a few things done. But if I push it too hard, I end up paying for it and am back in bed for days.

I was taught as a kid to not complain and "get through it." I was always a very active and athletic person. I feel such guilt for my health issues and try to hide them from my husband and daughters. Obviously, they all know when I'm "down," as they say, for days. But I rarely tell them when I go to the doctor or how much pain I'm actually in. They don't know that I'm in bed most of the day. I get dressed before they all come home. I don't want them to remember their mom as someone who was always in pain and taking medication. As it is, our lives are built around how "mommy feels" and if "mommy can do that" or not.

At times, I don't think my pain doctor even realizes how bad it is. My pain diary says one thing, but then I look ok and smile through most of the appointment, because I think I have to tough it out. I tell him how much pain I'm in and that this just can't be normal. He keeps prescribing the pain meds and doing injections on my neck and back. I have been asking for new MRI's and blood work, because I haven't had new ones in years. I feel like he could find something new in more current info and perhaps have me on a better treatment plan. I get the feeling the doctors in these big insurance companies are discouraged from doing expensive tests and are told to just keep writing prescriptions. My concern is that, with how badly my symptoms have become, that I may have MS or something more serious.

As you can probably tell, I'm really struggling. My parents keep telling me to go to the Mayo clinic and get some real answers. I just don't know how to do that with my insurance and without my previous income. Do you have any thoughts or suggestions?

Thank you so much!

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Answers (1)

Teri Robert, Health Guide

11/ 6/11 2:15pm

Hello again, wild pam desert,

That guilt is hard to cope with. Been there myself. One thing you might consider is talking with a mental health professional about it. Also, have you been screened for depression? Nearly 50% of Migraineurs also have major depressive disorder, so it's well worth it to be screened. If it turns out that you need medication for depression, have whomever prescribes it consult with the doctor who treats you for Migraines because some antidepressants can also be effective for Migraine prevention. "Two-fers" are great when it comes to our treatments.

Let's talk about stess as a trigger. As for stress being a trigger, there's still some controversy, but I hate to see anyone accept that stress is a trigger without at least trying to see if they encounter triggers during stressful times that they either don't encounter at other times or they're only triggers when the body is stressed. The International Headache Society has removed stress from their list of Migraine triggers and put it on their list of exacerbating factors -- things that make us more susceptible to our triggers. I'd have sworn stress was a trigger for me until I kept a very detailed diary for a few months. More information in Is Stress a Migraine Trigger?. I hope you'll thoroughly investigate this as I think we do ourselves a real disservice by thinking stress is a trigger for us and not looking closely for other triggers during stressful times.

Regarding doctors - you mention a pain doctor. I'm sorry to say that pain specialists generally aren't a good solution. Very few of them know much about Migraine. Their primary goal is to manage pain, but that's not the best goal of Migraine management. As you know, it's just as important to prevent Migraines as to treat the pain and other symptoms. Pain management specialists seldom know much about Migraine prevention, Migraine abortives, and total disease management. I understand that you may need a pain specialist for your fibromyalgia and RA, but does your doctor really understand Migraines? Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

I can see that you're struggling, and your parents' suggestion of going to the Mayo Clinic makes sense. One thing I'd like to point out, however, is that big clinics aren't always the answer. It's really the doctor you see who makes such a big difference, and not all the good doctors work in big clinics. I suggest that you choose a specific doctor, regardless of clinic affiliation.

Please keep me posted on how you're doing?

Teri

Q: I suffer from chronic migraines as well as fibromyalgia and rheumatoid arthritis. How do you deal with the guilt regarding how your condition affects your family??

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