My Experiences So Far With This Fibro Thing

Hmm, let's talk about fibromyalgia. This has been my worst week so far. The pain is gnawing at me, the Tramadol isn't working, And to top it off, more anxiety to flare my symptoms! I also think my depression is affecting my fibro symptoms, especially my cognitive abilities. Don't you hate it when you sound dumb because you just can't string your words together to make an understandable thought????

Actually, it has been a painful few weeks. Stair walking is a challenge. Long car rides are excruciating, and walking the poor doggie gets done when I feel up to it...which hasn't been very much lately.I feel like a 99 year old. My joints and muscles hurt. My fingers are painful and stiff. I am exhausted most of the time, but CANNOT sleep at night...ever!

I called my provider's office to make an appointment to discuss my symptoms. After three days and a call back to her office, she had a staff member to tell me that she was mailing me a referral to rheumatology for chronic pain. I was told that the doctor didn't address whether or not she would see me urgently. So, I decided to get a jump on finding a providers in my neck of the woods. That was an experience! I called several offices who either didn't do widespread pain appointments, only spinal injection or they don't treat fibromyalgia patients. I was literally told that in order for the receptionist to make an appointment for me, I would have to have another reason for my pain. I'm feeling some discrimination going on here!

I finally found a pain management center in my office, which is run by an anesthesiologist. I have an appointment for next Thursday. I hope to come home with a clear understanding of how I will be treated and a hope that things will get better. Fingers crossed!

Hopefully I will be able to share some things that make me feel better because behind all of this drama, I am still a girly girl!

A Little Info on Fibro...

Disclaimer: The information contained in this blog is strictly that; information. I am putting out this blog to share my experiences and knowledge that I have gained while researching my own health care conditions. I am not a doctor. This blog is not intended to be a substitute for medical advice or treatment from a doctor who is familiar with your condition.  If you feel that you have some of these symptoms, or any other symptoms for that matter, PLEASE CONSULT YOUR PRIMARY CARE PHYSICIAN FOR ADVICE AND FOLLOW UP.

Today, I will be focusing on the signs and symptoms of Fibromyalgia. While I won’t be getting into Endometriosis right now, it is important to note that there is co-morbidity between Fibromyalgia and Endometriosis: Meaning that many women who have Fibromyalgia, also suffer from Endometriosis. Many women, me being one, have started our journeys with undiagnosed pelvic pain. I will get more into detail on the symptoms of Endometriosis in a future blog.


Fibromyalgia is not a new disorder. It has been around since Biblical days. According to the article “History of Fibromyalgia” by Karen Lee Richards at the website HealthCentral.com, the earliest description of Fibro can be found in the book of Job 7:3-4 and 30:16-17. A quote from Richards’ HealthCentral article states “I, too, have been assigned months of futility, long and weary nights of misery. When I go to bed, I think, `When will it be morning?' But the night drags on, and I toss till dawn…And now my heart is broken. Depression haunts my days. My weary nights are filled with pain as though something were relentlessly gnawing at my bones.” (Job 7:3-4 and 30:16-17 - NLT)” (p. 1) Doesn’t that sound like what some of us are going through?!


According to Richards (p. 2) the term Fibromyalgia was first known as fibrositis in 1904, named by Sir William Gowers. Fibrositis means inflammation of fibers. The term held up until 1976, when it was given its current name: Fibromyalgia. The reason for the term change is that no doctors could actually find inflammation, making the previous term incorrect. Fibromyalgia means pain in the muscles and tissues.


In the book “Living Well with Chronic Fatigue Syndrome and Fibromyalgia” by author Mary J. Shomon, some of the most common symptoms of Fibromyalgia are (this list is by no means complete, there is an exhaustive list of Fibro symptoms):


v Widespread body pain for at least three months. The pain should be bilateral (on both sides of the body) and upper and lower body pain. Pain at the cervical spine, anterior chest, and lower back must also be present.


Pain at 11 out of 18 tender points must be present when pressure is applied to the area. See picture below.

 

http://www.womens-health-advice.com/fibromyalgia/tender-points.html

Fibromyalgia pain can be explained in many ways; Burning, cramping, sharp, pressure, aching, soreness, stabbing, and stiffness to name a few.


Persons with Fibromyalgia may experience recurrent tension and migraine headaches. We may have muscle stiffness and cramping. We may also have fatigue, extreme exhaustion, and the feeling that our body is going through a flu-like illness. These feelings are not relieved by rest. Stressful events, physical and/or mental can also exacerbate our fatigue/exhaustion.


Persons with Fibromyalgia may also suffer, as Shomon explains on page 70 of her book, with what some call post-exertional malaise. This literally means that after a period of physical activity, we can become physically sick. We can experience muscle pain, fatigue, and exhaustion after exertion. This feeling may last for 24 hours or more.


Fibromites (as some chose to call those diagnosed with fibromyalgia) can also experience sleep difficulties. Personally, I have terrible insomnia, which makes my fatigue that much worse. We can also experience, as quoted by Shomon:


v Morning fog


v Sleep apnea- (our breathing stopping while we sleep)


v Sleep myoclonus-nighttime jerking, jumping, and spasming of arms and legs (me, me!!!)


v Restless leg syndrome


v Unrefreshing sleep


v Frequent waking during the night


v Trouble falling back to sleep


v Insomnia


v Nightmares


v Night sweats


v Frequent nighttime urination


v Early waking






There are many other important symptoms to look for, such as vaginal pain, depression and anxiety, skin tenderness, and cognitive difficulties such as memory loss, impaired attention span, difficulty concentrating (brain fog) and an impaired ability to learn new information. I would recommend reading the book pictured below, which is where much of this information was received.

Links to books that I have found extremely helpful

The Complete Idiot's Guide to Fibromyalgia

                                                               The-First-Year-Fibromyalgia

                                                                   

Everything Health Guide to Fibromyalgia

References


Richards, K.L. (3/16/2009). History of fibromyalgia. Retrieved from http://www.healthcentral.com/chronic-pain/fibromyalgia-287647-5_2.html

Shomon, M.J. (2004), Living Well With Chronic Fatigue Syndrome and Fibromyalgia. New York, NY: Harper Collins Publishing Inc.

More than a thousand words...

Pictures have a way of speaking volumes. These pictures show that our illnesses are not always invisible.

Picture 1 shows me on a good day. I was able to put on makeup, got to work and be productive. I even wore a bold lip color that day because I was feeling it. 

 

Picture 2 shows a tired, painful me, who hasn't been to work in about three weeks. To me, I look weak at the eyes and just tired. Check it out...NO MAKEUP! That is an important distinction to make for me because I love my makeup. It's a creative outlet. And this day, I'm not feeling it. And don't miss the fact that I have my heating pad on my shoulders.

Seriously??? You're going to treat me like that?!

I know. I'm quite inconsistent with this blog thing. But what had happened was...

I have been going back and forth with Endometriosis pain and had settled my mind that this is what I has going to have to deal with. No biggie, some days are just going to be days of incapacitation. I got this! Until i realized that I have been feeling very achy and my migraines had started again after a five year hiatus. But hell, being achy was something that for as long as I can remember, I have been experiencing, Well, the headaches and body pain, not to mention crushing fatigue after running normal errand began to take over my life. I couldn't even go to my fave store... Target! If I did, I would have hell to pay and my bed would be my friend for a few days.

I was depressed and a new symptom popped up; anxiety! I felt like a basket case. So off to the Internet I went, looking up my symptoms. What I came up with? Fibromyalgia. At the time, I was under the care of an HMO, who would brush me off and say shit like "well, you're getting older" "You should use a little weight and exercise" What they didn't seem to understand was that I, as a 43 yer old, should not feel twice my age when getting out of bed in the morning and I damn sure shouldn't have searing pain when my feet hit the floor. That is not normal aging! Screw y'all!

In January, I changed my insurance to a PPO and met a wonderful doc who off the bat agreed with me and said it sounded like I was describing Fibro. She did labs for Lyme and b12. My tests came back normal, so the doc went over the tender points test with me. Voila! A Fibromyalgia diagnosis. I felt so relieved! I felt vindicated because I knew I wasn't wrong and this was definitely not normal aging. I was started on Duloxetine by my psych nurse practitioner, and my primary doctor agreed with that. I was also having spasms at my right shoulder and neck, so my doctor did prescribe Tramadol.

I am still having pain. Some days are better than others. Today, not so much. I have the heating pad around my shoulders as we speak and I have taken my Tramadol. This is gonna be an uphill climb. But I have no choice but to strap on my hiking shoes.

When does it end?

Well today, the bleeding is picking up again. With clots!! I haven't seen a day without bleeding since September 27. I knew this cramping was because of something coming. Damn Depo Provera. I am sooo sick of this. I would like to have some time where I don't have to wear a freaking sanitary product. I would like a day, hell even a half day, with no pain. This isn't fair!!! I don't care what anybody thinks, I feel like having a kicking and screaming tantrum. Except I'm too freaking tired to do it :(. Nobody could possibly understand the drama, trauma, or distress this disease causes, unless the share the diagnosis.

Just felt like venting.

Endo Awareness Apparel

I have begun building a shop for endometriosis/invisible illness awareness. At this point, the shop will sell apparel only. I just couldn't find exactly what I was looking for when looking on the web for endometriosis awareness products. Check out my shop. It's just opened, so look forward to more products in the very near future. I'm not in it to make money, I have a full time job. I just think more people should know about this horrible disease and the fact that there are illnesses that don't change our appearance, yet are just as real and just as debilitating.

http://sugarsdesigns.spreadshirt.com/ 

The Reality of Endometriosis

My life seems like it has become a series of guilt inducing situations.

 It starts with the fact that I feel like an inadequate employee. Oh, I hear the comments that are made when I am unable to come to work because either I am so exhausted or I am having a pain flare. Those comments hurt me the most because these people really don't understand that I am doing the best I can. They don't know that I wake up some mornings, get out of bed, and stumble... I can barely stand, let alone walk. They don't realize that I am in bed all day; not being lazy and watching TV, but holding a heating pad as tight to my pelvis as possible, to try to take the edge off my pain. They don't know that I sleep a great deal of the day, not because of narcotic pain meds (which I avoid if at all possible), but because that's all my body can do. But I try to smile and keep going like everything is OK.

I also have guilt over the fact that I can no longer make plans. I would love to say yes, I will or yes, I can. It just doesn't work out that way.  Sometimes, if I do say yes, when the day comes, and pain is a constant reality, I have to call and bail out. It makes me seem like an unreliable flake.  That me lately, the unreliable flake. I've accepted it...next!

I'm a student, too. I have missed a few assignments and my GPA is not what is could be. I feel guilty. But, my GPA is still good and I am learning to pace myself. I do assignments when I can concentrate and I have energy. I realize now that in warmer weather, I feel better, but it's going to take extra diligence in cold weather to get assignments done. My pain flares in the cold. Glad I realized that! I have decided to take as many of my classes online during the cold months. I can be warm, at my own desk at home and still working toward my degree.

I am learning to not feel guilty and that this Endo is not my fault. I am learning that there are days when I will have limitations and that I just need to go with the flow. There are days when I need more rest or when the pain will be too much and I can't do anything but take care of myself.  I have to be comfortable with what's going on with my body before I can expect anyone else to be. I know that. And I need not be defensive with people who don't understand, or just don't know what's going on with me. I have to come to terms with my Endo and create the most fulfilling life possible for me.

Exhausted!

I thought I was doing something today! I got up early...for me, and ran to the post office, did some shopping,  and filled the gas tank. Hell! I even polished my nails!!! Cool, I was able to do the little things that I wanted to do this morning. I was even able to come home and begin the monstrous task of organizing my closet. Now, you don't understand. I always say that my closet is a representation of what my like is like. It is a disaster! Dirty laundry on the floor, shoes just thrown here and there, body products squeezed on shelves wherever they can fit. I have been saying for over a year that I was gonna fix that mess. Well today, I was able to put a tiny dent in the mess. I felt so good about myself. Then, all of a sudden, I hit that wall of exhaustion and all I could do was take a nap. I couldn't even hold my eyes open to watch a YouTube beauty video ( my favorite thing to do!)

I am just waking up and by the grace of God, I have an energy spurt. Right now, I've decided to ride the energy wave and get some laundry done. I am cramping some now from carrying the heavy bag down to the laundry room, but in typical me fashion, I'm gonna ignore that until I get it done. Then I guess I'll be wiped out for the rest of the evening. Crap, I still have homework to do! Oh, well. It'll get done... at the last minute. And dinner?... Every man for himself!

Endometriosis, The Life Sucking Monster!!!

Lately, I have been reading a lot of stories from women about their endometriosis journey. I can relate to all of the symptoms that we share and appreciated the ones that we don't.  It's good to know that I am not alone in this. But, I am a little overwhelmed with all of the different ways that endometriosis can affect my life.

My endo monster attacks me on a daily basis. Most of the day, everyday, I have some degree of pain. It seems that  the daily pain is increasing in intensity. I have been given all kinds of anti-inflammatory medication and narcotics to handle the pain. The anti inflammatory medications aren't working and the narcotics make me so sick that I never take them. My remedy for a bad pain flare is usually heat, even though it doesn't completely resolve my pain.

What I am really bothered by is the complete exhaustion that I feel. I call it chronic fatigue because I can never seem to get enough rest. Even on the weekends, when I am just running errands, like grocery shopping, can deplete me of whatever energy I had for that day. I spend a lot of time in bed trying to "catch up" on the rest that I feel like I'm not getting. I haven't had it so bad that I can't lift my head, but I do feel as though I require a mid day nap. Which also means that I won't sleep well that night. It s a vicious cycle, exhaustion, nap, no sleep at bed time, exhaustion, chores, devastating exhaustion, nap...

A new symptom that I am experiencing is abdominal bloating. I noticed that even though I am losing pounds, my pants are still tight around my abdomen. I can tend to look like I am early in a pregnancy on some days. I am having this weird spasm in my abdomen and intermittent diarrhea and constipation. This is making me emotional because while I wouldn't consider myself vain, I do care what I look like in my clothes, and I feel like I look like crap in most outfits. Endo is even lowering my self esteem! 

With all of these things going on, it is becoming hard to maintain a sense of normalcy. I am missing in action from activities that I loved in the past. Events such as the yearly breast cancer walk that I do with my sisters had been put on hold for the past couple of years. I have missed church services a LOT and the weekly Bible studies that I held for the teen girls has been halted. And working... well I have missed so much work that my bank account is screaming right along with my manager! I feel like I am about to get back on track at work and BAM!! I am in bed again with my heating pad. Because I never know what to expect form my body from day to day, I cannot make plans. I know I'm going to get fired. Not only from my job, but from several relationships. 

All of this is taking an emotional toll on me. Yes, I am also depressed and anxious. I feel like I'm waiting for the other shoe to fall mentally, physically, and financially. I fell like I'm letting everyone down. I am now an unreliable person. Also, to me, it seems that people don't believe me because I don't look like a sick person. I cannot take it and now, all I can do is cry, scream, and grab my heating pad!