If you have ever had the pleasure of suffering a migraine headache than you know just how daunting the word chronic in front of migraines really is. After the last year and a half my battle with fibromyalgia has finally gotten as "under control" as it could ever really be. I have a wonderful new doctor who is a specialist in Fibromyalgia who has really been able to help me. I am stronger and feeling better than I have in a very, very, long time. But when it rains it pours, and I'm now fighting an even tougher battle. At my lowest point this last year or so, I really didn't think things could get any worse. I was wrong.
What I love about this photo is that most people would look at it and think; this is what it feels like to have a migraine. I look at this photo and think, this is what I would like to do to myself to relieve the pain of my migraine. I often feel like I want to bang my head against a wall when I have a migraine. It’s quite intense and lately it’s been overwhelming.
A few days ago I was researching on the internet looking for descriptions of what Fibromyalgia pain feels like. As I read peoples descriptions of their pain I thought to myself how lucky I was to not feel as bad as they seamed to be. I was at a loss for words myself to describe what it felt like. Now that I am in my 4th day of a bad flare up I realized that I do feel that much pain. Just not all of the time. It's easy to forget how bad you felt when your feelibg better but it's also nice to realize how much better you where feeling when your feeling worse.
I have been on my new meds now for a couple of weeks and while I was pretty miserable getting used to them, I'm happy to say they have made a big difference. I'm amazed that with all the doctors I have been to none of them thought to give me a muscle relaxer. It has made such a big difference. Not only do they relax and loosen my muscles and help with pain, they've made exercise much easier as well and exercising is the best thing I can do for myself.
I told my Fibro specialist that my hair was falling out and breaking and asked if that could be from fibro or stress. He said it could mean my iron is high and sure enought the blood test came back with my iron unusually high. The specialist was concerned about it enough to call me personally to discuss it with me. He told me that he thinks I have hemochromatosis and that I should get genetic testing to confirm it and have my husband tested. It's a resessive gene, so if my husband is not a carrier of the Gene, my daughter can't have it. He also told me to contact my family especially my siblings and tell themt o get tested as well. That was an interesting conversation. Of course as soon as I got off the phone I did some research...
I have had a very good friend struggling with the effects of fibromyalgia now for several years. I have watched the struggles and pain cross her face as she tried to complete daily homemaking activities such as cleaning, cooking, and washing the dishes. She would be in conversation and finishing up something really quick and all of a sudden, a whimper of pain would escape her lips as she grabbed at several parts of her body at once. Sometimes, her back would bother her, other times, would be her wrists, or legs. Everyone began to look around the room with curious expressions across their face trying to understand or figure out why the pain surfaced in the first place.
I went to Vanderbilt yesterday to see the only Fibromyalgia specialist int he state of TN and the first thing that I want to share is how GREAT it was to talk to a doctor about my Fibro that knew so much about Fibromyalgia. I don't normally like talking to doctors but I felt so comfortable talking to a doctor who was really listening and taking me seriously! He thinks he can help. That's a great thing to hear. That's the first time any of my doctors has said, I think I can help you. He doesn't just focus on the Fibro as one entity but belives in treating the syptoms seperately.
I started on lyrica, and after almost a year I gave it up because of side effects (I didn't want to live the rest of my life with the side effects). AFter about an hour and a half of taking the 150mg dose I would get overwhelmed with dizziness, my head would spin, I could walk, my vision would get blurry, I couldn't focus or think straight. I couldn't even carry on a conversation. This would slowly ease away after several hours went by but my head never felt quite "clear". I felt the Lyrica wasn't helping enough for it to be worth this. So my doctor decided to switch me to Gabapentine. The Gabapentine did very little for me, even at high doses.
If you could use only 5 words to describe who I was before Fibro they would be: Independant, Active, Youthful, and Great Mother. I was always sporty, and a bit of a tomboy. I played soccer, ran track, danced my heart out, was the kind of parent that got down on the floor and played with the kids. I could do anything, lay tile flooring, knock down a wall, I was so physical. I was fiercely independant and always wanting to help others. Now I have to depend on others, I can't help people the way I want to. I used to be very successful in my career and now I have had to slow it down so much that it is a financial stress on my fmaily. I don't dance, or play guitar, or mow the yard anymore. But once I got past the grieving stage, and yes we grieve for the life and dreams and hopes we have lost. Once I decided to take control of my life I realized that I needed to enjoy it more in any way I could. Enjoy every moment that is good and hold onto those moments as best I can. It's very hard not to dwell on all the many bad times, and it's hard not to let it overwhelm you but, now at least I am trying to control my Fibro and not the other way around.
I thought I might share with you my personal exercise plan. I exercise for about an hour two days a week.
Here's what I do:
Start by mentally preparing myself and reminded myself I need to do this. This is very important.
Do some warm up stretches, legs, calves, thighs, arms, shoulders, sometimes even my back.
Get my heart rate up and adrenaline flowing by jogging for about ten min. If it's a bad day and I can't jog I walk.
Stretch again, only more intensively this time.
I then am led through a series of muscle strengthening exercises by my Physical trainer, that train either core muscles, (abs) arms, or legs. I use stretching and ody Resistance techniques.
MD Junction has got to be the worst example of a website meant for support. I have been a member of their online support groups for a year now. We all share resources with each other, tips, ideas, or just talk. I shared the link to this site with them and Alan at MDJunction banned my account. When I emailed them asking why I couldn't access the site they said I was banned for spam. I sent them an email and explained to them that I was not spamming and am not a spammer. I told them that I posted a link to my personal fibro blog, which I created partly because my friends on MDJunction wanted a way to put together videos and spread awareness for fibromyalgia. My site is not commercial, it’s not selling anything, and it’s not in competition with MD Junction. People share resources on MD Junction all the time. My site is just a resource that I happened to have built myself because I do web design. I have been an active member on MD Junction for a year.
When you hear people recomend exercise do you cringe as much as I did?
Starting any kind of exercise program may seam like a insurmountable mountain but it really makes a difference. The thing I learned when I started exercising was that the pain I felt during exercise was temporary and once I was able to push myself past that pain, my muscles started getting stronger.
I get really sick with a flu-like virus for three months, and never quite recovered. Since then my body has been completely out of wack and in a lot of pain. Chronic Pain. Between the pain, extreme fatigue, tremor, and other stuff and the disfigurement in my hands and toes, and my family and friends insisting something was wrong, I finally went to a PCF. That was in December. My PCF said it could be…… and did blood test, which came back “normal”. They said, “May be fibromyalgia and admitted that they said that because they don’t know what is wrong. I insisted that something was wrong and referred to a Rheumatologist. Found out that I had to wait almost 6 months for an app. And was still in pain so I found another Rheumatologist who had an earlier appt. That rheum said Osteoarthritis and “may be” fibromyalgia and said go to neurologist. He did no x-rays of my joints or further blood work. He did a test where he pushed on various spots looking for painful reactions but was very dismissive of every thing. I told him I had inflammation but in his notes I wrote that I said no inflammation. He did not ask me any questions. He did not read my list of symptoms or family history, did not look at my x-ray, and ruled out inflammation based on my blood work despite my insistence that I was having inflammation. He actually wrote in his notes that I claimed to have no inflammation.
At the time my blood tests where done I was feeling better. At that time I did not realize that I was having bad times and good times. (Cycles)
When I went to see my doctor before thanksgiving he told me that the weird migraine I had was either a Hemiplegic Migraine, which mimics a stroke or I had a stroke and either way a Hemiplegic Migraine increases my chance of stroke. I hadn’t talked about it and so therefore had not processed the thought as that is how I process things by talking. Right before my panic attack I was talking with my friend about it and when I was running I was thinking about it and that’s when I got a really bad anxiety attack. I didn’t realize what caused it until I started to talk about it again and it got worse. Not to mention I was already under a great deal of stress from lots of other things.
I woke up this morning and decided I was going to create a one-stop website for awareness, information, help, and support. It's time to use my tallents to change the world! There are many great resources but it takes time to go to them all so I want to have a collection of lots of information right here on one site. There are online support groups but they are forum formats and I'd like to have something more personal and fun like a facebook community. I will be adding a review section so we can all share what works and what doesn't. And last but not least, this blog is somewhere where we can all share our stories of what it is like to live with Fibromyalgia. When it's all said and done I'll market it to help spread awareness! Sound like fun?
