My Fibromyalgia Story
by Brandi Hadinger
All of my family’s special occasions are celebrated with food. I am sure that is true for many people, but those people don't live with my daily pain...
The leg pain started when I was about 8 years old and was so random that it was called "growing pains" and not treated. As an adult, after the birth of my little girl, it started back up but, again, it was random and it was labeled "restless leg syndrome." This “syndrome” was treated with awful medicine that caused horrible side effects and still didn't take the pain away. Then, I tried two other medicines for restless leg syndrome, but neither offered any relief from the pain. The pain was random and would come in the evenings out of nowhere.
It took me at least a year to go through that diagnosis, and I just knew that was not what I had. I decided it was time to change doctors. I’d been under that doctor’s care from birth to 23 or 24 years of age; so I had to start over with a new doctor and tell him what I had been through.
By this time, I was starting to suffer from a case of "the winter blues," as my grandmother had called it. I thought this was a separate issue, unrelated to my leg pain, as did the doctor. Did I mention I had NO MEDICAL insurance! So this new doctor put me on new meds, and I started, yet, again another battle of side effects and what seemed like a new medication every few months because they wanted me to stay on them for at least a month to "get the full benefit" and "for my body to adjust". I can remember times when I would be in bed for 4 days at a time with my head pounding so hard I couldn't do anything but sleep due to a side effect of a med.
I was a young mother and having a very hard time keeping up with my home, and it seemed to be getting worse and worse. I was feeling more and more down, mostly from pretty consistent leg pain at this point (about 2003, I think). I was feeling defeated and started having what I called, “breathing problems” - turned out those were silent, long-lasting panic attacks. So I was put on, yet, another med. I was still trying different anxiety meds and depression meds, and some were getting more tolerable. I was a zombie and still had horrible pain in my legs. Pain that was shooting, aching and radiating; it would jump from upper right leg to lower left leg over night then to upper left...you get the idea. It was not a pain that stayed put.
I was really starting to think that I was going crazy. I had never heard of Fibromyalgia at that time. So the doc wanted me to go get a few tests at the hospital. As I recall, one was a vein scan to check for blood clots. They also tested my hormone levels, as well as for diabetes and arthritis. So I was sure that something would come up….nothing. They said I had very small veins, and to this day I do not know what that means! They also said that I was border-line on my hormone levels, and I still don’t know what they meant by that.
See, since I didn’t have insurance I could not afford another doc visit that soon just to get those questions asked. My doc appointments would be 1 to 3 months apart because that was when I had reached my “wits end” and just had to go in. It was a vicious cycle that lasted for years. I will mention that my newest doctor is amazing; he just had to rule everything else out since there is really not a test to prove you have Fibromyalgia.
So then about 2005, I started having hip pain that would be there one minute and move to the other hip the next morning. I went to my doctor and started crying in his office when I started to tell him about the pain (and I DO NOT CRY!!!). I was really falling apart mentally, physically, and emotionally. Stomach issues started about this time, too….food would go straight through me or I wouldn’t be able to go for a week. I would bloat and just be miserable.
I started having problems going to sleep and staying asleep at night. I have always had very vivid dreams as well. Sometimes I would dose off then suddenly awake only 20 minutes later jolted from a nightmare. Then came the task of getting back to sleep. It got to the point that I would be up 5 – 10 times a night and wake feeling like I had not sleep at all. I noticed that one of the medications that I was taking as needed for anxiety, if taken late enough in the evening was helping me get to sleep and stay asleep with no apparent side affect. My doctor later told me that it was safe to take on a regular basis for sleep. These “sleep disturbances” would later be merely one symptom of my diagnosis.
I was/am a young mom in my twenties. This is just not supposed to happen! So the doctor tells me to go to this CT-Scan place that gave a cash discount costing $495, which was a lot of money to me. I just knew it would show him something, and then he would finally be able to help me, so I started saving up the money. It took me 6 months or better to afford that scan. I was so anxious for the results, and they told me……they found nothing! I just couldn’t understand it.
Several more months go by and the doc says to go to this pain management place because they specialize in it, and they would be far more help in this area. I went, and they advised me to do physical therapy - well, of course, that was out of the question! Since I couldn’t afford that…they tell me that they can give me 2 injections in my lower back to see if that would help….$894…..and it aggravated my pain even more for the following month!
In pure frustration, I went back to my doc and told him what they had said and done. This is when he suggested that I might have Fibromyalgia. So he gave me some samples of, yet, another medicine; and I was off to try again. I thought it was great that my doc finally had an idea of what might be wrong with me and that “it” has a name.
As soon as I got home, I searched for “Fibromyalgia” on the Internet and was shocked to see that I fit the symptom list perfectly. I soon became overwhelmed and realized that this thing called FMS really presented way more questions than answers. These were questions that NO ONE had answers for. Even if you ask what Fibromyalgia is, the jury is still out on the definition.
I was still a mess, and it was really only getting worse and worse. I felt so hopeless. My husband (as wonderful as he is to me) just didn’t know how to help, and he feels so responsible for getting me well. Throughout this entire ordeal, he has shown me compassion, but in the beginning I thought it was just pity.
The 1st med did not work for my Fibro, so my doc tried me on another. Then I began having tail bone pain - just pure pain when I sit too long. Then came the shoulder strain pain. Then, another med - again, with no luck. By this point, I am in pain all over and am taking anticonvulsants for pain, an antidepressant that is also to help with the pain, an anti-anxiety med (as needed), Vicoden for pain, stomach meds (as needed), and migraine meds (as needed).
So, in desperation, I look up FMS on Facebook and find a support group. It was so amazing to be in touch with people that have been through pretty much the same exact long and drawn out process that I have. So I start searching for advice on what does work with their pain….there is plenty of what doesn’t work!!! I couldn’t find any advice except, “don’t over do it,” and, “get plenty of rest”. Of course, I was not satisfied with this answer! But I sure couldn’t find anything. It was still great to know that I wasn’t alone, though.
In January 2010, I was 30 years old and hardly making it up the steps in my home due to the pain. I was having an especially bad day (to say the least), and I put a post on the Facebook Fibromyalgia page that was angry, sad, and downright showed my hopelessness. Luckily, someone responded saying she knew something I could try. Her name was Christy Pooschke. She, too, had FMS but was almost completely pain free.
I was suspicious at first, but I was willing to try anything to get my life back. So we spoke on the phone for over 2 hours. She told me about food additives and chemicals that are in the very food that I eat all day everyday. She told me how to get started eating “real food”. It seemed like a very radical change but I had been praying for the past 5 years for something…anything! I told God and everyone around me that I was willing to do ANYTHING to be rid of the pain. So that was it…I had to try it!
Besides, it really wasn’t all that radical; it was really just about eating what our great-great grandparents did….REAL FOOD! What a novel idea, right?!?! My days were then spent researching things that Christy had told me, and I found overwhelming proof that she was right! Now, I am attempting to avoid MSG, Aspartame, and any other “natural or artificial flavors”.
It’s February 2010, and I have been on this new way of eating or dietary plan or restricted diet or whatever you want to call it for 28 days now. Clearly, I don’t have a name for it yet…lol. I have not been perfect either…. far from it, BUT I can honestly say that my legs have not hurt for the last 18 or so days (except for one morning after I ate a brownie and ice cream at a birthday party). I have not been able to say that in years! My stomach is getting much better with far less bloating. One day, I slipped and ate something I shouldn’t have, and my vision went blurred and I could not focus for the longest 15 minutes of my life.
This is scary stuff they are putting in our food. We need to know what it is, and the effect it has on our body. You know they say you need to be informed so you can make a choice, but I think if you were informed there wouldn’t be a choice in the matter. Oh, and guess what…it’s not hard, either! It’s not hard to shop; it’s even more simple, actually - stay on the outside walls of your grocery store, for starters! You just don’t need anything in the middle aisles. So, you are thinking produce is expensive…NO, IT’S NOT! I get out of the store having spent 25% less, now…and with way more food….REAL FOOD.
If you have children, do it for them! Raise a generation that helps undo what our parents unknowingly did to us. I dare you to do a little research on it! Google: “aspartame, MSG, excitotoxicity, excitotoxins,” just to name a few - and see for yourself. Then, to get started eating REAL FOOD, visit Christy Pooschke’s website at www.CompletelyNourished.org. You can ask her questions there, get recipes, and meet other folks who care as much as you do about what they are eating….no strings attached!
If you have questions, please feel free to contact me at the email address below. I would love to help in any way I can!
I am so happy you are doing better, My story is a little like yours but with different things. I have had what I believe was arthritis but maybe fibro. just not really sure. My pain is/was on the top of my feed, two toes and knees. My stomache were much like yours as well.
I was to the point where I thought I didn't want to continue to live with this type of old age setting in. I don't much believe in doctors, so I never even went that route, thankfully didn't spend the money on all of that.
I agree with you it is terrible what we don't know. I feel like I want to tell the world. My daughter had read a book about a 28 day cellular cleanse, which she asked me to try. Of course in that cleanse you don't eat all those bad things that are processed, so it was the same as removing them, but with added benefits. The book talks about how MAD you will be at the world for lying to you all these years (mostly the medical profession). Then at the end of the book, at the end of your 28 days, it tells you to go out and eat whatever you want. But warning you that you will be so sick and never want to to it again.
I WAS TRULY AFRAID TO EVER TRY THAT!
It has now been 3 months and I am completely vegan, without sugar and wheat. It does limit your food choices but everything is delicious, thus makes it so easy in that sense.
My one concern is that I still have some pain in my feet and weak in my knees, and some pain there too. I think I have read that it takes 2 years to completely rid your body, so I am hoping that as I continue it will improve. I can't complain though, as it is 50% improvement now. I was where stairs were so painful, I would avoid them when possible. Not it is more weakness then pain.
I guess you and I and all the rest of us, continue working toward a healthy life and making all the changes we need on the way. I just realized you wrote this in 2010, so you are well heading toward your 2 years, Great!! Hope each month has shown more improvements.