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 (3)

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

sparkles

8/26/12 4:14am

Dear Wld Palm Desert-

I hope you will find some encouragement from what I have to tell you.

1. Guilt=is never a good motivator. It actually will debilitate you.

Ask yourself-

Am I doing the Best I Can?

With my current limits?

If yes, good for you.

If no, what changes can you really make?

We are taught now that a doctor can find the answer and fix us up. I can't say I believe that anymore. I call doctors "educated guessers".

I ask myself daily-

What if this is as good as it gets?

Your family, is your biggest supporters, best helpers, advocates and protectors.

If you are expending energy to hide how you are feeling- from your family, how is that being honest? They are the closest ones to you. Wouldn't it be easier to tell them the truth? Less energy is expended that way. If your family sees how much you do, with the energy you don't have, they will appreciate you, and they will recognize the fact that you used your precious energy for them.

And in my experience, no amount of makeup or clothes or hairstyling can hide how I really feel from my husband and close friends.

They just take one look and say, havin a bad day, huh?

Let your family know-that they are so important, you use almost all the energy you have, to take good care of them. And some days, your energy doesn't last as long as you want.

Same for the doctor-come as you really are. Let them see what you really look like. No makeup. Who cares? They aren't going to ask why you aren't wearing any makeup today.

I also had to really analyze my current energy levels, and my current schedule of must get this or that done things. And I promise that all the chores in your house, will wait for you. They don't go anywhere, and no magic elves show up and do it for you. I had to choose what was really important.

Here are a few practical things that I started doing when my energy levels changed for the worse(again).

I took the time to see what I could streamline- in my routines. I cut my hair short, so I don't have to waste a lot of energy on my hair. With my longer hair, washing, drying, styling and haircuts were costing more energy and money and time. So I enjoy my short cute style.

Cooking dinner-can be the hardest thing to do! I tried to streamline dinner too. Switch to the easiest. Least time and energy consuming things. I really don't need to be baking bread from scratch anymore. So I don't. I am constantly looking for new crock pot recipes, since that is my best friend in the kitchen! It works all day, while I rest.

I no longer buy clothes that need to be dry cleaned. Or ironed. If they can't be wash and wear-I don't need them.

To keep my shower from getting gross-I clean one wall at a time, or part of the tub when I am in taking a shower.

Keep cleaning things close by, so you can do a teeny bit at a time.

Or consider paying someone to come in and clean the hard things, like just cleaning your bathrooms and floors. They will be happy to help someone who really needs it. The first question to ask them- is do you like what you do? If they don't, keep looking. Ask friends or family for recommendations of people they use.

Try to identify the things that are energy-drainers. For me, being in the heat will use every ounce of energy I have. And wipe me out in a hurry. So I limit how much I am out in the worst heat of the day. And stay in the air conditioning. I find I will get more done if I wait, till it is a little cooler.

I read something that could help you, (google the spoon theory) to explain to others how you are really feeling.

Because we have many chronic illnesses that aren't always visible-some people think we look fine. We know that isn't true, at all.

The most important thing to remember is- that the diseases you have are beating you up enough already. You don't need to help that along by beating yourself up. So, STOP beating yourself up!

Find a support group, online, or close-by where you live. That way you have the ability to talk to someone who really, REALLY understands what you are going through. Then when you need encouragement, there will be someone to listen and help.

Don't bother with those who don't get it. They mean well, but they just don't understand, and they never will unless they go through it.

And instead of looking at what you CAN'T do anymore-

Look at all you have accomplished with the multiple chronic diseases that you have!

Keep hanging in there!

sparkles-

tg48317

10/11/12 11:33am

I wish I had the magic pill for you, but unfortuantely there isn't. Luckily or unluckily, my husband also suffers from chronic pain, so he gets it if I don't want to cook dinner or get the groceries. Sometimes you have to baby yourself, and not feel guilty about it. No one really knows how bad it is except you but I tend to do things that distract me. Like watching DVDs or reading or petting my kitty. I try not to think about it, cuz then it will be too hard to get through the day.

We all have problems, and I'm like you, I don't complain. THis year I was diagnosed with arthritis in my knees and IBS. So I definitely have a lot of pain beside from the Fibromyalgia. But I don't advertise it.

I was also lucky enough to get a different job at work, one with a lot less stress. Yes the pay isn't as good, but it is so much better now, no longer working like crazy and forgetting things, and trying to make your mgr understand why you can't remember something told to you 5 minutes ago.

I also have migraines, and if I don't catch them in time with meds, then I stay home. Sometimes just laying down and having my kitty near me is all I need. Sometimes I try to sleep with Tiger Balm patches, which really helps.

Anyway, we all have different coping methods but whatever they are, do them. I also have a massage once every 2 weeks, acupuncture etc. Whatever works, works! I no longer feel guilty, I have conditions and I have to take care of myself, whether someone understands or not...that's their problem!

Nancy Harris Bonk

10/12/12 11:27am

Guilt is a tough one for some of us with chronic health conditions. I find it to be a day to day battle. Some days are ok on the guilt front, other days not so much. Having seen a chronic illness counselor really helped me learn how to cope with being chronically ill. Now if I could just implement what she said to do every day, I'd be all set!

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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