Fibromyalgia Update – How are things 2 years after diagnosis?

Fibromyalgia hits people in different places and in different ways. Here is how FM presents for me and how I explain it to others (when I feel like explaining it or when I feel the person will actually listen or even want to listen – it doesn't happen often).


The majority of my pain is costochondritis. The best way to explain it to others, I have found, is by having them imagine someone pressing their thumb as hard as they can against their sternum – without relief. On and on and on, no surcease. When it's very bad, add to that he feeling of an anvil on your chest making it impossible to breathe deeply or without pain. Laying down makes it so much worse, as your ribs spread and pull on your sternum and surrounding muscles. When I lay down it's as though someone has put their hands INTO my chest cavity (from above) and is spreading my chest apart, pulling and pulling for all they are worth. Costochondritis and chronic pain is no fun at all.
When I described the above to my family doctor, she looked at me with utter horror on her face. She said she was SO sorry that I was having this kind of pain (me too). She has diligently worked with me and even with my pharmacist for the last 2 years to find the magic cocktail of drugs that works the best for me. I've tried a lot of pain killers over the last 2 years, and there's no love lost with Oxycontin that's for sure. The stuff makes me nauseous and constipated. NO one should have to take medication for the medication that gives you nasty side effects.
I digress. The rest of my pain is in my joints. Especially my feet, knees, hips and hands (ALL of my hand, including my wrists). Then my neck and entire back, especially my lower back. If it's not my chest being the worst chronic pain, then it's somewhere else. Never do I have a single moment without pain. Never. I have been diagnosed with arthritis in my chest (?!), hands and feet. I have a slight scoliosis as well. Of course I have other co-morbidities too: endometriosis, plantar fasciitis, thoracic outlet syndrome, irritable bowel syndrome and obstructive sleep apnea (114 apneas per hour at first sleep study). Many of those are common for Fibromyalgia patients.
Yes, I am overweight. Yes, losing some of that weight may help alleviate some of this pain. However, I have had chronic pain for over 20 years. Not all of that time has been as an overweight person. I *highly* resent anyone who claims exercise and fresh air is a cure-all for anything other than perhaps a foul mood. Even that is debatable.

Vegetarian food

Diet CAN alleviate pain. I was 6 months into a mostly vegetarian diet and absolutely loving it, taking excellent vitamins and I lost 60 pounds. I didn't have nightly headaches anymore. The first thing I noticed before the weight loss was an absence of pain! and it was GLORIOUS. I had started a new job, even got a quick promotion. Everything and I mean everything in my life was going extremely well. That's when the chest pains started happening. Gasping, clutch your chest kind of pain. It took nearly 6 months of testing and specialists before being referred to a rheumatologist who diagnosed me with Fibromyalgia and the 2 year epic search for pain killers that worked began.

The magic cocktail included Lyrica for nerve pain, the deep bone pain in my hips, and that horrid burning skin sensation (if you have it and wonder what helps, increase your Lyrica dosage, it might work for you). Cymbalta works best for me in the evenings when I have the most pain, so I take my 60mgs after supper or just before and it helps me through the night whether I'm awake for it or manage to sleep. I'm more likely to be awake all night than not.
The real magic painkiller is Nucynta ER (Tapentadol) which IS available in North America but it is so new many pharmacies don't have it or haven't heard of it.  Don't be surprised if your doctor has never heard of it either. Just ask about Nucynta ER (extended release) and hopefully your doctor will consider it for you. If you are one of the lucky ones without a drug intolerance (many with FM can't tolerate ANY drugs at all), that is. I have experienced no side effects from Nucynta. NO constipation either (often common with pain medication). Nucynta may be The One that completes your personal magic cocktail that FINALLY manages to enable you to have more decent to good pain days than bad ones.
I am by no means pain free but at least I can now say that my pain IS being managed as best it can. No, I don't think we'll ever find it any better than it is now. My doctor cautioned me from day one that I may never be pain free for the rest of my life and not to consider that as a possibility because then my expectations would be beyond reasonable. With expectations I may never meet, "nothing" may be good enough, forever. So don't set yourself up for a possible unattainable goal in regards to chronic pain.

fatigue and Fibro Fog

Sadly, I have found absolutely nothing that helps the fatigue. After pain, fatigue is the worst thing for me. Some days I wake up feeling like I just can't get up. Sometimes I am ok if I stay sitting down all day, yet that fatigue lets me know it is there every time I stand up and need to walk around the apartment. Like wading chest deep in water after running way too long. Or think of your very worst flu experience and how you felt as weak as a newborn kitten. That's how it is most days for me, and for most of the people I know with FM. Most of my nights are spent awake due to pain (painsomnia). Insomnia rules my life, literally.
The brain fog or "Fibro Fog" expresses itself by taking words away from me. Sometimes it's several minutes before I can find or remember the word I wanted to use. Being a voracious book reader since a young girl, this loss of being able to express myself (because I can't find words) is maybe even worse than all the rest. It's like being struck blind randomly and suddenly, not knowing when it will happen or end. It's like feeling suddenly useless and stupid, neither of which I have been in my entire life. There is no part of Fibromyalgia that doesn't keep taking and taking and taking my quality of life away from me.
Having an invisible illness makes most people, even well meaning ones, more apt to judge you for walking slowly or taking too long at whatever task you are trying to get through. Including parking as close as possible to the store you want to go to. Or parking in the Disability spot even though you have a permit. People ARE mean, and rude and obnoxious. I would prefer not to have to deal with anyone at all. Explaining I have a chronic pain condition is far easier than saying "Fibromyalgia" because most people either don't believe it's a "real" disease or they think that FM is only given as a diagnosis as a blanket term for the doctor not knowing (or believing) what is wrong with you. It's no wonder most people with chronic pain and FM are prone to anxiety disorders and depression.
Depression is something anyone with a chronic illness can relate to. Constant chronic pain will eventually chew away at the best of us, regardless of how good natured you are (and I am). There are some days where I just would rather not get up. Or talk to anyone at all. Ok that last is most days lol. I don't want to go out, ever. I will leave doctor's appointments to the last possible second before having to go because I'm running out of medication. My doctor does not call in refills. So I must physically go for an appointment instead.
So yeah, anxiety is a huge part of my life. All of my life, in fact. I have always dealt poorly with stress. It has always taken a physical toll on my body. I always seem strong and capable to others because I CAN function just fine under stress. It's when I get home when I finally get to relax that it hits me, hard. Poverty makes sure there is always anxiety. When I had to quit my job because I could no longer work, we lost my second income. We have been living precariously ever since. Our cats eat better than we do – pre-made canned food with all the nutrition they need in single meals. Wish there was something like that for the very poor, too. Poverty equals a poor diet. Anyone who can prove different to me is DARED to try. Please, do tell me your secrets :P Otherwise it's a lot more bread and cheese for me!
Again, I digress. Fibromyalgia is nothing you should ever "think" you have. You do not want it. You do not want to wish it on your worst enemy either. However, if you do suspect you have FM, get some tests done. Get a referral to a rheumatologist as they are more likely to know more about FM and be actually able to diagnose it. If your current doctor scoffs at you or doesn't believe in FM, get a new one. You need to surround yourself with willing and knowledgeable medical professionals who have your back.
If you find you are diagnosed with Fibromyalgia, get some kind of support system in place ASAP. Befriend your pharmacist if you haven't already. Your pharmacist can help you tackle your doctor in getting on medication that might actually work for you. Join Twitter and search for other people who have Fibromyalgia. My Twitter friends have kept me sane on the darkest of days. It makes a huge difference to know someone is awake, online and in as much or more pain as I am, who is willing to talk, or console and to laugh with when all you want to do is crawl up and cry (or die). If you live alone or not, join Twitter and start talking to #spoonies like us who really truly know what it is like to suffer with Fibromyalgia.
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