Wednesday, January 20, 2010

Fibro-Girl

Something I don't talk about that much on this blog is my health issues. For the past 5 years I've struggled with some things that some people think are all in my head. Other people think it's all because I'm overweight. And lots of others attribute everything to my "stressful life." [Funny how other people assume that my life is stressful and don't stop to ask if I'm actually stressed! How do they know?!]

The thing is, I've never been able to get a definitive diagnosis. Maybe some people don't need that, but I do. Otherwise even I question whether I'm just a wimp that is imagining things.

One of my New Year's Resolutions was to take care of myself better. This includes eating better and exercising as much as I can. It also includes taking care of medical issues that have been eating at me for years but I've never done anything about.

Today I had a doctor's appointment that I kept, despite this being transplant week. I am at the end of my rope. This week has had me in much more pain that usual, and "usual" is no small amount of pain for me. I've been to many doctors in the last 3 years and nobody will help. Last week my doctor put me on a medication that I had a pretty severe (like, almost went to the ER severe) reaction to. He gave me one med that was highly contraindicated with another med I'm taking. So he was "fired" last week. Not knowing where else to go I called my mom crying. She is always forceful when I need her to be. She told me that I should go back to a doctor that I had as a teenager and also went back to as a young married person. At least Dr. Ting knows me and cares about me, she said. And she was right.

This morning I headed out of the hospital with more than a small amount of guilt for leaving my guy. I had to be there at 8:30 for a 9am appointment (paperwork). Then I went back to the room and interviewed with the nurses. Then they said the doc would be there "in a few." Yeah right. It was like 45 minutes later when she came in! I see that as something that could be good or could be bad. If the doc gives me all the time I need when I'm with her, I don't mind waiting. [I got back to the hospital at 1:00, by the time I finished the appointment and went by the house to feed the dogs.]

I start telling Dr. Ting my story. Last night I made a list of all the symptoms I could think of. Everything. Even embarrassing stuff I hadn't told anybody else about yet. I started getting my hopes up when she said "start talking" and then proceeded to type everything I said into the computer. After I was done she said, "You've been to that many doctors and nobody has given you an actual diagnosis?" "Nope." Finally, after 5 years, she said the words I didn't want to hear, but did want to hear. "You very obviously have fibromyalgia." See, I knew that I had most of the symptoms associated with Fibromyalgia, but the doctors I've been to would not go there. Like I said. They would say it sounded a lot like fibro, but they thought it was probably because of stress or being overweight, etc.. So for me, it was very validating to get a diagnosis. She validated me even more when she told me she knew that I was feeling real pain, that really affected my life, and it wasn't all in my head. She agrees (as do I) that stress affects the severity of symptoms, but it DOES NOT create the disorder!

What's interesting is that I learned some of the particular pains I feel, mixed with other particular pains, are only seen together in fibromyalgia patients.

The other side of this issue is how exactly to treat the pain I feel. I've been on so many medicines. I got to the point where 3000 mgs of ibuprofen a day wasn't making a dent in the pain. I've tried Aleve. Mingraine medicines. Arthritis medicines. Even 2 Fibromyalgia medicines. Some of them don't work. Others of them work at first then stop working. But the scariest ones are the ones that I have had poor reactions to. I had a horrible reaction to one of the two fibromyalgia medicines I've tried, so I had to stop that. The other one did nothing--might as well have eaten a tic-tac.

Today I got 3 new meds to try. A very new fibro drug that works to stop joint pain. Another drug that works to stop nerve pain. These are the ones that could actually make a difference in my quality of life for the long term. They aren't pain-killers like vicodin. They work differently. For the short term, she also gave me a script for Tramadol--one of the few pain killers I've tried that give me some degree of relief. She gave me a larger dose than I've ever tried before though, so it might be really good. In fact, I would say that after one larger dose I am already on cloud nine. My most acute pain for the past three days was gone for 4 whole hours today! That is HUGE!

I'm sure that many of you who have known me for years see how huge I've gotten. I am heavier than I have ever been before. The ironic thing is that all this pain and fatigue started right after I worked my butt off to lose 50 pounds. So I've always known that people who tell me the pain would go away if I lose weight were wrong. The weight was put on because of the pain! I've now put on 75 pounds since 2004/2005. To give you some idea of the pain... during the 45 minutes I was waiting for the doctor, things got very uncomfortable. When I was sitting my tail bone and another area were in so much pain that I would stand up. But I have planter's fasciitis so severe (verified by the foot doc) that it is really painful to stand as well. So I sat, then I stood, then I sat, then I stood, for the 45 minutes. No relief. Lay down you say? That's when my hip pain kicks in (although laying down gives me the best relief). So how does an overweight person lose weight when their foot doctor tells them no more than 5 minutes walking/standing at a time if you can help it (yeah right!)? And when you have fibromyalgia you don't get the good pain-relieving endorphins that regular people get with exercise. It actually does make your pain much worse. At any rate, now that I have hope for less pain I will also hope to be able to exercise so that I CAN lose weight.

You can read about the symptom of fibromyalgia HERE. I was shocked how many I have, right down to reacting negatively to the meds that might help me! A hint for you women out there. The most embarrassing pain listed in the symptoms? That's the one that was a big key in me getting the diagnosis.

There you have it. I got a diagnosis. I got validation. And I was given hope for a more pain-free future.

Anita

10 comments:

Laurel 11:50 PM  

Hi Anita,

So glad you got a diagnosis, even though it's not a fun one to have. (I have 2 close friends with fibro.)

Anita ... I would LOVE to have a partner in tackling our weight loss issues. While I don't have fibro., I don't have a thyroid (due to cancer 20 years ago) and I have chronic back pain (due to a serious car accident). So, I too have MUCH weight to lose ... medical issues to deal with ... and am in need of an encouragement partner.

We have talked before, and physically (besides the fibro) we are very similar in our weight loss needs.

I'd love to partner with you, and set some goals for this year.

Laurel

Sister Beta 9:39 AM  

I'm glad you got validated! I have a friend with Fibro- no fun! :(

Your honesty about your weight cracks me up! When I was overweight, I pretended like I wasn't...but it killed me on the inside. Have you tried Curves? It's awesome, for women only, takes 30 minutes and you do intervals of standing (walking in place, etc.) and sitting/machines. I lost about 80 pounds with diet and Curves and it will always have a special place in my heart. :)

Pastor Deb 9:06 PM  

Anita, I can so relate to you.I have suffered with Fibro for 7 yrs now and I really hate it. But we have to learn to go on.. You can do it. I know about the weight gain too. I saw a new doctor today and he gave me 2 new meds to try. Sounds like what they have put you on. Lets hope we both get relief. God bless all you do!

Terynn 7:12 PM  

Anita:

I was was diagnosed almost 20 years ago with fibro, by the same excellent and kind Family Practice dr. that delivered both of my children. Over the years, I have visited all the specialists and have taken many types of medications.

But finally, I have found what medicines and regimes work for me. A different mattress, the addition of regular medical massages (versus a spa day massage), medicines and realizing that I will have to manage this the rest of my life, makes me take one day at a time.

I am thankful I can work and thankful that I don't think about fibro every minute of every day, like I used to. Keep after it---the caring for yourself thing. It is work, but soooo worth it.

Lastly and the saddest thing to me? My soon to be 19 year old daughter is beginning to have some symptoms. I have never spoken much to my children about my fibro, so I am pretty sure she is not being "suggestible". sigh At least she will have a mom who believes her symptoms and will walk her through the process...

Blessings...

Rachel 7:56 PM  

Oh, you poor thing. I'm so sorry you've been in so much pain. And BTDT with doctors who don't want to do anything except for say "loose weight". I don't have fibro but I have another condition that didn't get diagnosed for several years because no one would listen. They kept telling me to loose weight but turns out the condition was causing the weight gain. Boy was I mad when I found that out.

Anyway, so glad you found a good doctor and I'll be praying that the treatment she has prescribed will work for you.

A. Gillispie 9:01 PM  

Thanks ladies. =-)

Laurel, I so appreciate you thinking enough of me to want to partner with me! Honestly, I just am not motivated that way, but I would love to encourage you through the changes you'd like to make!

Sister Beta, we have Curves here but I've never tried it. Having the time to go to a gym seems beyond me at this point, but maybe someday! If I can get my diet under control I will then take the next step.

Pastor Deb, the put me on Savella as the new Fibromyalgia drug. Hopefully it works!

Terynn, I had never thought about a new mattress, but I will say, my hips and legs hurt less on the hospital "couch" than they do here at home. My hips and legs are already screaming after me after two nights back in my own bed. Hmm..

I'm sorry your daughter is already having symptoms. When I look back to my college days I can see the first symptoms starting to pop out at me. I didn't realize it at a time, but it had definitely been a long time coming to get to this point.

Pastor Deb 10:27 AM  
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Pastor Deb 10:31 AM  
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Pastor Deb 10:33 AM  

Hi, I think my one daughter has Fibro also unfortunately! I have to tell you that I am sure my mom had it. I used to get sooo mad at her. I was young and never understood. I used to think "Where is my active happy mom?" I used to not even want to call her because all I heard was "this hurts today or this hurts today " and it would make me sick. I just got angry with her. Now ladies, I understand her pain and it is too late. My mom is now with Jesus. I can't tell her I am sorry for not understanding her and say forgive me mom! It saddens my heart but theres nothing I can do. So if you have kids try to explain it to them carefully as I am to Alicia and my married kids too. I have given them articles written by others about the experiences we have with this pain and it is helping them understand more. I will pray for you all and ask for you to pray for me. God bless..

hannah 9:04 AM  

I never go to my doctor anymore asking for pain killers prescription and then be turned down at the end, all I do is order online from www.medsheaven.com hassle free and low cost, they have three pain killers listed on their website which are ultram tramadol celebrex that you buy, and the best part is no prescription required!!!