This week’s Fibro Warrior is Melissa of Central NJ. She was diagnosed in 2004, just a few months before she turned 31.
Tell us a little bit about yourself:
I’m single, dating. I felt pretty bad about myself for too long, like I was damaged goods. But, I decided that’s not getting me anywhere and I’m a good person who deserves happiness. I began to date once that mental shift happened.
I have 2 dogs – a 1 year old rescue terrier and a 14 year old Labrador who has neurological deterioration in one of his rear legs. Taking care of the dogs forces me to be more physically active. It takes me out of myself – a state in which most of us live when we’re suffering from chronic pain.
I worked in finance for 10 years but, finally had to go out on disability. It’s upsetting to see that the government agrees with your specialists about you being disabled but, it’s a necessary evil.
[Tweet “The best advice I’ve received – Put your health first. via @MS73”]
What lead up to your diagnosis?
Beginning in May 2003, I developed wide spread pain, my migraines (that I had since I was 10 and which had all but, gone away) came back with a vengeance, my stomach – which was always problematic – veered sharply into IBS territory, my sense of smell was intense, heightened and everything made me dizzy and nauseated…I felt like a canary in a coal mine. I was constantly lethargic, no amount of sleep was enough and I wasn’t dreaming most nights. I had always been a human version of spell and grammar check. Then I began to spell phonetically and some words were more than just out of reach, it was as if they never existed.
I began to do research; I prayed it was ‘just’ Epstein Barr because there are treatments for it. In the back of my mind, I knew it was Fibromyalgia. I made an appointment with a rheumatologist after my GP ran all the necessary blood work and ordered MRIs, CT scans, x-rays done to help a diagnosis be made more quickly. My GP, who still stays up on the newest disease research and information, told me that a Fibromyalgia diagnosis would be likely and started me on Neurontin and Ultram. He said he wouldn’t put me on a low dose anti-depressant for pain control, he wanted the rheumatologist to handle that. He told me to begin taking 2000 IU of D3 per day, told me to get very light exercise like walking or swimming – nothing strenuous. I give my GP a lot of credit. In 2004, a large portion of the medical community still believed that Fibromyalgia was a junk diagnosis. My GP knew me since I was a freshman in high school and saw the huge differences in my physical and mental abilities.
My good friend came with me to my first rheumatologist appointment. I gave the doctor a VERY detailed medical history including when specific symptoms began. I needed to go through all my test results and needed the help of friends and family to remind me of the symptoms. He listened carefully, went through the copious notes and test results, and examined me. At the end, he sat down and said I have 18 of 18 tender points. He explained what the current medical knowledge of Fibromyalgia involved and he tweaked my medications.
What was your life like?
My life was busy. I went out every weekend. I worked 40+ hours per week in a mentally-demanding job, commuted 10 hours per week. I cleaned the house each weekend, mowed the lawn, gardened, etc. I was in a fairly new relationship.
How did your family initially handle your illness?
They tried to be positive; they told me I’d probably get better. But, they didn’t have what I had, and couldn’t feel the fear I felt as new symptoms developed and my formerly perfect memory, spelling, etc. slipped away from me.
What do you feel is the most challenging aspect of Fibro?
There are 3 aspects of Fibro that are particularly difficult for me. Feeling stupid is awful. I feel like a living version of the middle and last parts of “Flowers for Algernon.” I was really smart and then I wasn’t. I seem fairly intelligent in written English. But, it takes me a lot of time to compose detailed emails and documents, spell check, moving around sentences, etc.
Not being able to just push through feeling like crud is upsetting. When you have a cold, you can use adrenaline to push through it if you need to get something done. Sure, you might be a little tired after but, the cold will go away soon. I’ll pay the price if I try to push through a Fibromyalgia flare up. I become SO lethargic that it feels like I’m trying to wake from anesthesia.
The 3rd and hardest aspect of having Fibromyalgia is that the most effective medication/treatment for me is an anti-seizure medication which would could cause birth defects. I was never one who had maternal instincts towards children; I loved animals – I had a hamster, 3 indoor, litter-trained bunnies and my dogs. I was told over and over again that I’d make a great mom based on how I treat my animals and how I love, entertain and educate my niece and nephews. I assumed I’d have a kid or two when the time was right. Fibromyalgia put an end to that (the lethargy means adoption is out, too). I’m lucky I have my niece and nephews. I see one nephew very frequently. We do art projects together, walk my puppy, talk a lot,etc. I love when he gives me spontaneous hugs, when he runs to find me when he visits. I’m grateful that my brother and his wife allow me free reign to spend time with my nephew. I even pick him up from school from time to time. That gives us about 30 minutes of uninterrupted time to talk in the car. It’s amazing what kids will tell you if you just listen and let them talk.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I have chronic intractable migraines. I see a neurologist who is a migraine specialist. I’m on a low dose calcium channel blocker as a preventative medication and receive 31 injections of Botox, 4 times per year. Neither is perfect. The Botox is necessary. It stings BADLY but, it helps. I’ve also tried TMS and a TENS unit. The migraines are genetic. They used to be triggered by monthly hormone fluctuations. But, since they returned in 2003, the primary trigger is barometric pressure. I will get sick with a BAD migraine approximately 48 hours before a front causing rain or snow moves into the area. High heat and humidity makes me ill too. Basically, any fluctuation in barometric pressure will trigger a migraine. My Fibromyalgia will flare up when the migraines don’t cease after a couple of days. I feel like the Fibro takes advantage of physical weakness and strikes when I’m worn down from illness (be it a virus, a migraine, etc).
I also have IBS. Commercials for Metamucil are fascinating to me. I can’t imagine ever needing anything like that. I’m never without Imodium – especially if I need to be far away from home.
I have nerve damage and adhesions from 2 upper abdominal surgeries. The pain is a lot to handle – on most days, it’s worse than my Fibromyalgia pain. The specialist and GP believe that I began with myofascial pain post-surgeries and developed Fibromyalgia for whatever reason – as though a switch was turned on and the Fibromyalgia just started.
I’m hypoglycemic. No matter what I eat, my blood sugar never reaches 100. I must eat a certain amount of protein and healthy fat per day. If I want to eat something bad (see below), I MUST immediately eat a healthy meal afterwards or my blood sugar will plummet. I went to an endocrinologist who told me I need to control it via my diet and light exercise. There are type 2 diabetics in my family. That’s enough reason to be careful with how I eat. An episode of low blood sugar always leads to a migraine and it worsens my benign familial tremor (genetics is fun, isn’t it?).
What (if anything) have you found/ done that has improved your symptoms?
I was taught self-hypnosis. It’s a form of deep meditation that I use it to reduce my blood pressure and control my breathing. It’s very hard to get ahead of the pain (and/or migraine) if it’s intense so I try to start that meditation as soon as I feel the pain building. I went for acupuncture for almost 2 years; it helped for up to 3 days after a treatment. I used it for the nerve damage, Fibro and migraine pain. Staying on the 2000 IU/day of D3 helps my immune system. Eating well and avoiding sugar is vital. Food isn’t exciting to me though I LOVE junk sugar. I’d eat cruddy treats ever day if I could. Root beer floats are like a drug to me. But, sugar causes widespread inflammation in the body and, as mentioned above, makes my blood sugar fall quickly and sharply. Once in a while, I’ll give in.
[Tweet “self-hypnosis, meditation, and acupuncture help me control pain. via @MS73”]
How open are you with friends & family about your illness & symptoms?
I used to hide things but, I learned I had to be honest. I didn’t want people to think I was being flaky when I had to cancel an appointment or a visit. I also had to ‘train’ people to understand that no means no. Certain things are not up for debate. My health has to trump everything else or I’ll pay the price. If I have to do something (like attend a family or friend wedding), I plan very carefully so there’s no rushing around, I have time to eat, to take my meds, to nap, etc. Some friends are gone – either they stopped talking to me or vice versa. I eliminated anyone toxic from my life and I won’t apologize for doing so. I can be extremely forgiving but, being a doormat is not acceptable. There’s a known mind-body connection. Getting upset when it’s not necessary seems to lead to flare-ups.
[Tweet “I had to ‘train’ people to understand that no means no via @MS73”]
What was the worst advice that you followed?
I don’t follow anything without doing my own research. I’ve heard some things that are borderline offensive – as though a migraine is ‘just’ a headache that will go away with Tylenol or that Fibromyalgia is curable.
[Tweet “Don’t follow any advice without doing your own research first. via @MS73”]
What is your favorite way to cope with your life as a spoonie?
I take time to relax. I watch certain shows like Supernatural. I like being able to remove myself from my situation, even if for just one hour. I love taking care of and spending time with my dogs. While the kids can be exhausting, being with my niece and nephews is a gift. One other thing is that I will always be available to help a loved one do research on a medical issue that’s impacting them (either directly or indirectly). I’ll make sure a doctor has a clean malpractice record, that a treatment plan makes sense, etc. I suggest a second opinion on bigger issues. I’m lucky that I understand medical jargon because it enables me to read the results of medical studies. I’m open to new treatments/medications.
What is one thing you’ve learned about yourself since your diagnosis?
I’ve learned that I have to stop thinking of myself as damaged goods. People will only treat you as well as you expect to be treated.
[Tweet “People will only treat you as well as you expect to be treated. via @MS73”]
What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Please do your own research, please have an advocate for doctor visits and/or to help deal with your insurance company, be open to legitimate treatments, try to remain cautiously optimistic. Speak up – ask for help. Trying to be a superwoman will give you a one-way ticket to bed rest. If a doctor is condescending, leave. You are a partner in your care.
[Tweet “Trying to be a superwoman will give you a one-way ticket to bed rest. via @MS73”]
Is there anything else you’d like the readers to know?
As hard as it is to remember and internalize: you are not your illness. Yes, it will take over many parts of your life and you may need to alter your game plan. But, never stop trying for happiness. No one deserves less joy just because they have a chronic illness – you are not less of a person. Be compassionate towards others and be compassionate towards yourself.
[Tweet “You are NOT your illness via @MS73 #Spoonie #Fibro”]
Be sure to connect with Melissa on Twitter @MS73.
If you enjoyed this interview, be sure to check out the other Fibro Warriors and get to know them all. If you’d like to share your story, I’d love for you to contact me.
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