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Pain Anxiety

Anxiety is a common disorder. Some have social anxiety, panic disorder, a specific phobia, and others, myself included, have generalized anxiety. I also have another type of anxiety that won’t be found in any medical book or website. It’s what I refer to as “pain anxiety”. I am currently anxious about how much pain and fatigue I will likely experience due to the busy and stressful couple of weeks I have ahead of me. Part of what I’m referring to is of course Christmas. The holidays are a stressful time for most people. However, managing Fibromyalgia is a full-time job in of itself and throwing Christmas into the mix of the regular daily struggles is just “ugh”. I bought all my gifts online to take away the physical aspect of shopping so I was proud of myself for that. I am not hosting any gatherings so that’s yet another thing I don’t have to worry about. The negative part is my husband and I are going to three places on Christmas Eve and two places on Christmas Day. We have to see both sides of the family which is why there are so many stops. I’ve been trying to make Christmas Eve at least two stops but I haven’t come up with a solution yet. It’s way too much for me.

The other part of my pain anxiety is about work. I just realized that starting tomorrow, I’m working nine days straight. Yes, I said nine. That’s a lot for anyone, but for me, I feel like I’m literally going to drop dead. I’m in pain just thinking about it. The first day I’ll have off is on Christmas Eve, which of course as I just explained is far from a day off. So my 2 weeks go: work nine days straight (on my feet, mind you), wake up Christmas Eve to get ready and visit three places, then Christmas Day is split between two places, then the day after Christmas I start a new work week. I’m sure the scheduling was an oversight, as I know we were trying to cover vacation days for a couple of my coworkers. But because we had enough trouble covering the shifts, I’m not sure if I can fix this and get a day off sometime in between. A regular work week is incredibly painful for me so I don’t know what this is going to feel like. Christmas is about spending time with my family, who I hardly get to see anymore, and now I likely won’t be able to enjoy myself.

Each problem by itself is tough, but put them all together and it’s a disaster. I don’t know what to do. Pain anxiety, my friends.

The Roller Coaster of Emotions

We are all emotional beings. The experiences in our lives make us feel so many different emotions. Living with a chronic illness has made me more emotional than I ever was. I feel so much not just in a week but every single day. Here’s only some of what I feel on a daily basis:

1. Frustrated. Work frustrates me to no end, but when I’m in pain, I get frustrated easily since I can’t do what I used to be able to do. Can’t pick this up, can’t sleep through the night, can’t make it to the party. GRR.

2. Annoyed. I get annoyed at loud or abrupt noises, changing temperatures, bright lights, and strong smells. They affect me more than they used to.

3. Sad. The only time I leave my house is to work. I don’t see my family and friends anymore and it upsets me. They don’t bother with me and I understand why, but it makes me sad. Being in pain makes me sad in general. It’s not fun, and there are plenty of times when it makes me cry.

4. Worthless. Most of the time I feel like there’s no point in living. I failed at my career and I’m unhappy with my job situation. I’m in constant pain and it keeps me from doing things I enjoy, and I’m losing touch with loved ones. My life is headed nowhere. 

5. Grateful. When I begin to feel worthless, I remember I have a husband, cat, and a few close family members. I am grateful to have them and I have to keep telling myself that I do have some people who care. It helps that worthless feeling fade away.

6. Anxious. I’ve had general anxiety since college, but every day I get anxious about pretty much everything. If I know it’s going to be a long day (or week) at work, I get anxious because I’m worried about my pain and how bad it might get. If I have to travel or go to an event I get anxious that I won’t feel well or enjoy myself. I never thought pain could cause so much anxiety.

7. Angry. Being in pain makes me angry. It’s a terrible feeling and I don’t know how or why I have this. I get angry that nothing helps me enough, and that I have to work full time which makes it worse. I also get angry at people who don’t think Fibro is real, or the ones who think they’re experts and tell me if I try this magical pill I’ll be cured. Just stop. 

8. Hopeful. I become hopeful for a tolerable pain day in the near future, for a change in lifestyle, and for more research and better treatments.

9. Exhausted. I’m physically and mentally exhausted every day. This is a feeling that does not go away, regardless of how well I slept or how much I rested on my day off. Pain, anxiety, stress, migraines, work… Yeah, exhaustion is permanent.

10. Ashamed. I don’t enjoy having to tell people I don’t feel well. If I can’t make it somewhere, of course I have to say something. It’s not an easy conversation to have and I still never know how to explain that I’m in severe pain. I’m ashamed to say it, especially at my age. I know the person on the other end thinks I’m being lazy or dramatic or just making an excuse. 

I’m sure some of you Fibro Fighters can relate. 

Thanks for reading.

My Fibro Story

“I’m dying to be alive, not trying to just survive”. That’s a lyric from “Dying to Be Alive”, a song by my all-time favorite band, Hanson. (Yes, Hanson). Those words have never rang more true to me than right now. I’ve been in survival mode for the past four years. I’ve had ups and downs with work and changing careers during this time, but it’s mainly been due to my health. It’s been four years since I’ve been without pain and for over 2 of those years, I didn’t know what was causing it. I went to what felt like a million doctor’s appointments and had many tests done, including X-Rays, MRIs, blood work, and even a nerve test. The tests all came back “normal”. I told one doctor that there was nothing normal about a woman in her mid-twenties experiencing constant pain. All he did was shrug and sign me up for physical therapy (which didn’t help, by the way). It wasn’t until 2014 when I was finally diagnosed with Fibromyalgia. Since there is no test for Fibromyalgia, doctors have to rule out everything else before a diagnosis is made. I was happy to finally put a name to this pain that I had, but I was certainly disappointed to learn that at age 28, I have a chronic illness with no cure, that is difficult to treat, and is very misunderstood.
There are many people that don’t understand what Fibromyalgia is or don’t believe it exists. If you are one of those people, then buckle up, because I’m going to tell it like it is. Fibromyalgia is a chronic pain condition, which unfortunately means I’m not going to “feel better soon”. I don’t feel one type of pain. Sometimes I feel throbbing pain, sometimes I feel shooting pain, and sometimes it feels like part of me is on fire. The pain is in my joints, muscles, and nerves. People with Fibromyalgia have what doctors call “tender points”, which are the areas of the body that are the most sensitive and painful. The worst ones for me are the knees, back, elbows, neck and shoulder blades. I also have what are called “flare-ups”, which are periods of time when the pain is at its highest and it is absolutely unbearable. Those times are when literally everything hurts, even my skin. Flare-ups can last for a day or several days and usually occur during periods of stress, overexertion, or hormonal changes. There are days which I refer to as “tolerable” when the pain isn’t severe, but it never goes away. Aside from pain, fatigue, difficulty sleeping, anxiety and migraines are other common symptoms of Fibromyalgia, all of which I deal with as well. I manage my symptoms with medication, but because I’m constantly overexerting myself, I likely don’t feel as much relief as I should. Like any condition, each individual’s experience may be different so pain levels, response to medication and treatment, and other symptoms may vary. It is hard for people to believe that I’m in chronic pain. I’m 29 years old now so I’m young and I “look fine”. Not every condition calls for a cane or a wheelchair. Millions of people suffer with depression and anxiety every day. Those are real illnesses, right? So is Fibromyalgia. Just because you can’t see it, doesn’t mean it isn’t there.
The reason for my “constant overexertion” that I mentioned before is my job. I’m a certified pharmacy technician in a retail pharmacy and I work full-time. In addition to the job being mentally stressful, I’m on my feet between 8 and 9 hours each day. I don’t have a typical Monday – Friday, 9-5 schedule. It varies week to week and I don’t have consecutive days off, so getting into a routine and getting enough rest is difficult. My husband and I live paycheck to paycheck to make ends meet so I need to work and can’t reduce my hours. I will admit that there are days when the pain is so bad that I know I can’t last the day. I’m ashamed when I have to leave work early because of pain. I end up feeling guilty instead of being satisfied that I’m taking care of myself. I hate letting down my team, and I feel like they don’t believe me. I know my job isn’t exactly “Fibro Friendly”, but there aren’t many options out there for me. It’s tough to find work in general so this is all I have right now. Overall, I push through because I know I have to, but it is a struggle every single day.
Fibromyalgia has most definitely turned my life upside-down. Most people my age get home from work and cook dinner, go out and run errands, maybe do some cleaning, or even meet a friend for happy hour. Once I’m done with my shift, I’m in severe pain and my body has shut down. I immediately get changed and get into bed. Sometimes I don’t eat dinner because the pain and exhaustion have taken away my appetite. Aside from work, daily tasks are difficult to manage as well. Taking a shower is like running a marathon. It takes so much out of me that when I’m done, I have to sit down for a while in my towel before I get dressed. Regular household chores like laundry, vacuuming, and making the bed are draining. Shopping is avoided at all costs. (Yes, I’m serious). Cooking doesn’t happen too much either. My social life is pretty much non-existent. I have family and friends but I don’t see them much. I tend to only go out on special occasions. I use up all my energy at work and after that I have nothing left in the tank. Trust me, it’s not how I want it. I’d much rather be having fun than be stuck in bed.
Having a support system is important when you live with chronic pain. Mine isn’t a big group, but I’m fortunate to have the support of a couple people. My husband has learned more about my condition as time went on and he knows what my limits are. He’s there to listen and will do what he can to help, like the grocery shopping and other household chores I’m unable to do. My mom has been very supportive as well, but that’s nothing new. She’s been there for me my entire life, but I’ve never needed her more than I do now. She can relate to me due to her own condition which is similar to Fibro, so it helps to talk to someone who truly understands. Mom’s always just a phone call away and I’m grateful for that. I’m lucky to have them in my life and I am dead serious when I say that they are the reason why I’m still here today.
The main reason I want to share my story is to make more people aware of what Fibromyalgia is and the major effect it can have on someone’s life. I want others with Fibro to be believed by their family, friends and physicians. The more people who are educated about this syndrome, the more likely that more research will be done, and eventually better treatments will become available. I know that people who don’t have Fibromyalgia will never truly be able to understand, but an acceptance of our condition would go a long way. The judgments need to stop. The invisible illness that is Fibromyalgia needs to become visible. Writing this post wasn’t easy because I mostly feel embarrassed to say I’m in pain. Many people immediately think “drama-queen”, so I try to keep my Fibro conversations limited. I want to put this out there for others who are going through a similar situation too. Make sure you have some good distractions. Keep fighting, even when you feel like giving up. It’s not easy, but I hope someday we won’t have to fight as hard. 

Insomnia

This is the third time in four days that I’ve woken up in the middle of the night unable to fall back to sleep. It’s getting old. I’m beyond exhausted. I fell asleep after my pain medication kicked in but a few hours later I find myself wide awake. It seemed to take forever this weekend to catch up on sleep, and now I’m behind again. I’m not saying this is completely out of the ordinary since my sleep patterns have never been normal, however this has happened too often in such a short period of time. I’m still waiting for that magical “off-switch” – the one that turns off my brain so I don’t think or feel pain. I have a 9 hour day tomorrow and now it’s going to be even more difficult to get through. Today was a rough pain day. I’m approaching my “favorite time of the month” and it always makes my pain worse. Seems to be that way for a lot women with fibro. Maybe it explains the insomnia too… I don’t know. I’m going to try to fall back to sleep again. Wish me luck.

Acceptance

I worked Monday and Tuesday this week and on Wednesday I went to Boston with my husband. We took the train in and arrived around 11, checked in to the hotel, had lunch, and went back to the hotel for a couple hours to rest. Around 4 we had dinner and drinks then went to the Red Sox game. We had a great time and it felt SO good to be away. We could only afford to stay one night, so Thursday morning we checked out, had lunch, then took the train home. I thought I was very smart on this trip. We took a cab to and from the train station/hotel, and our hotel was barely a 2 minute walk to Fenway Park. I did that on purpose so I didn’t wear myself out. When I woke up in the hotel Thursday I felt like I got hit by a bus. My guess was I was stiff from the 2 and 1/2 hour train ride and the hard seats at Fenway. I kind of expected to feel yucky that morning though. But it continued to get worse. The train ride home was so uncomfortable and of course it felt like forever until we got home. I went to bed early that night since I felt terrible, but I also had to work at 8 am the next morning.

Friday morning I still felt like hell. Luckily I only worked 8-2. Problem was I had plans to go see Taylor Swift in concert on Saturday at Metlife Stadium in New Jersey. She got tickets nearly a year ago for both of us and a bunch of her family members and I didn’t realize the Boston trip and Taylor Swift were in the same week. Also, when I agreed to go to the concert, my pain wasn’t nearly what it is now. To be honest, I was worried about the concert for awhile. I love Taylor Swift and I love my friend. It was everything else. The venue is an hour and a half away, but on top of it, we were going to leave around noon, meet up with her family, then head to the venue to tailgate before the show. There’s an 8 hour day right there before the concert even starts. So Saturday morning arrives and I’m crying in pain. There is no possible way I can go to this thing. I dreaded telling my friend, who was psyched for the concert, but I had no choice. Luckily, she wasn’t mad. She felt bad that I was in so much pain. Her family was going so at least it didn’t effect her as much. I just felt bad canceling on such a big event.

As I said, these plans were made almost a year ago which is why I was in that predicament. I don’t actually go anywhere but work and home anymore. As for Boston, that was booked well in advance too. But I went with my husband and I moved at my own pace. Sadly, I still paid for it. I can’t have fun for one night without suffering the consequences of pain, no matter how many precautions I take. It sucks. The reality is my life has changed completely. I can’t work and have a social life because my body can’t handle it. Work exhausts me and causes me great pain. Sometimes people will ask me to go somewhere after work and I’m like “are they out of their freakin’ minds?” I can’t wrap my head around the fact that people have the energy to go out after work, or to work all week and have all these big weekend plans. It hurts me just to think about it.

So yesterday, as I was laying in bed all day on a gorgeous summer Saturday while the rest of the world was at the beach, taking walks, and seeing Taylor Swift in concert, I sadly accepted my new life. I’ve gone through the stages of grief and finally reached acceptance. My name is Kristin and I have fibromyalgia. I suffer from widespread chronic pain, fatigue, depression, and frequent migraines. I am not the same person I was even last year. My relationships with my family and friends aren’t the same. I barely talk to them anymore. My husband and parents are the only ones I associate with. My husband helps me as much as he can when he’s not working, and my parents (mostly my mom) check in and try to help as well. I wouldn’t have spoken with my friend if it weren’t for the concert. The other few friends I have are too busy with their lives, doing fun things (as they should) so I don’t hear from them. Even my other family members don’t call anymore. They all know about my pain but clearly they don’t care. I’ve been there for everyone through all the good and the bad. I’ve never given up on my loved ones. So in addition to everything else, I’m heartbroken.

I’m going to spend my day off in bed again and get as much rest as I can to prepare for 40 hours of work on my feet. *sigh*… I don’t know how much longer I can do this.

Thanks for reading.

Hello Flare, I was expecting you

Working for 4 days, having one day off, then working 6 days straight is not fun for anyone, but for me it was basically torture. I knew it was going to be a tough couple weeks and I knew it was going to catch up to me. Surprisingly, I thought the flare-up would arrive sooner. I’m in pain after every work day, but yesterday I really started to feel it. Then when I woke up this morning it took everything in me to actually get up and shower. Ugh, showering is such a project. I knew today was going to be awful when I put my makeup on and it hurt. Yeah, my face hurt. I somehow survived my 9-hour shift, came home and made a sandwich for dinner (because cooking? really?) and got in bed. I am very happy that I have a 3-day weekend. My husband and I both have tomorrow off (which is a rare occurrence) so the plan is to sleep in a bit and do a little shopping in the morning. I desperately need some new clothes and we have to go to the bank to change our address and order new checks. (Over 2 months after the fact. Oops.) I plan on doing nothing but resting for the remainder of the day and the weekend. I need to tell my boss at some point that I can’t do the type of schedule that I had the last 2 weeks. Days off aren’t just for fun, they’re very necessary for me to rest. I’m already overexerting myself every single day, which is probably why it seems like my medication isn’t working and I’m not feeling any less pain. Everyone I work with knows what I have, they just either don’t care or don’t fully understand. Or both. I don’t want to complain constantly but I don’t know how to convey how I feel. Especially on days like today, it would’ve been nice to sit for a few minutes (aside from my break) but it didn’t happen. So glad I’ll be away from there for a few days. I’m so aggravated with both customers and coworkers at this point and I need a mental and physical break.

With that said, I’m going to grab a little snack and then try to get some sleep. Thanks for reading.

Types of Pain

Pain is such a general term. There are different categories and levels of pain. Breaking a bone, sciatic nerve pain, migraine headaches, post-op pain, pulling a muscle – those are all different feelings. Living with fibromyalgia, I’ve certainly learned and experienced my share of pain and it’s often difficult to explain to others what I’m truly feeling.

Throbbing pain – I’m certain everyone has felt this at some point in their life, such as being on your feet for a long period of time. It’s as if your muscle or joint developed a heartbeat, only it hurts every time it “beats”. This is a common feeling for me and other fibro fighters. For me specifically, the throbbing occurs mostly in my lower back, knees, and my shoulder blade area.

Shooting pain – This is a tough one to describe. Shooting pain can come at any time. I can be sitting on the couch completely still and suddenly it feels as though someone is sticking me with a needle, but instead of it being on the skin/muscle, it’s deeper. This is nerve pain, and it absolutely sucks because there’s not too much that helps this aside from rest. It can be quite severe and can literally make you immobile.

Radiating pain – This is what I call my “usual” pain. It’s there if I move and it’s there when I don’t. It can feel like a burning sensation sometimes. Typically my tender points are the areas that get the radiating pain (back, knees, elbows, etc). The severity varies as well. On good days, which are few and far between, I have a low “dull” pain. It’s still there, but it’s not as bothersome. On work days or other times when I overexert myself, it’s severe.

Migraine headaches – Ugh. Everyone’s had a headache at some point in their life. Basically multiply a normal headache by about 1,000 and there you go. Extreme sensitivity to light and sounds, nausea, and of course the horrible pounding on your head that makes you want to die.

Those four “pain categories” are the most common for me. The one I’m experiencing now is the shooting pain. It is going up and down my left leg and it’s quite painful. It started this morning and the level of pain increased throughout the day. I don’t experience this often but when I do it usually doesn’t last long. This is different and I’m beginning to get really uncomfortable. So, on that note, I’m going to end here and rest up. I have a 9 hour day of work tomorrow (on my feet) so I hope this goes away soon!

Thanks for reading.

Work, pain, and a fibro ad

Today is my only day off. I worked 4 days and tomorrow I begin a 6 day work week. The funny thing is I got a text asking if I could come in today because “so-and-so called out”. That’s unfortunate and it’s going to be a crappy day for them, but I seriously can’t work 11 days in a row. I’d be happy to help if it was a week where I had less hours or something but that’s not the case. It’s my time of the month and I’m in a LOT of pain right now from that and the 35 hours I worked so far. I have a lot I know I should do, but the main focus today is to rest.

Speaking of fibro and resting, I was watching my Red Sox on TV the other night and a commercial came on for Jordan’s Furniture. I only heard of it from watching NESN so I guess the store is in the Massachusetts area, but anyway, they were advertising mattresses. The guy said “These are great if you have fibromyalgia, arthritis, [etc]…” and my eyes lit up with excitement. I can’t tell you how happy I was to hear “fibromyalgia” on a commercial!!! I know Lyrica is also advertised, but this was different. This was good publicity for the condition. Yes, the point was to sell mattresses but I don’t care. Awareness is key. So thanks to Jordan’s Furniture for putting fibromyalgia out there 🙂

Ok, the pain has gotten to the point of unbearable so I’m going to rest on my very comfortable mattress for hopefully most of the day. Thanks for reading.

Dying to be alive

Shame on me for not updating in what feels like forever. I’ve opened this page several times over the past week to write a post. I then stared blankly at the screen for awhile and eventually walked away. I need to write. I need to vent.

Last week I had a meltdown. For good reason… or at least I think so. I hate my job, I hate the pain, I hate barely having a relationship with my husband anymore, I hate that someone in my family is always in the friggin hospital, I hate getting paid absolute crap, and I think most of all I hate being in this state and feeling like I don’t have anyone to vent to. Hello, blog. Yeah, I have my husband, who will always listen to me. But it’s always the same. He says everything will be ok. He says it won’t be like this forever. And I really wish I could believe that. Last week’s meltdown was for every reason and no reason at the same time. I have terrible anxiety on top of this godforsaken fibromyalgia and sometimes I wake up, look around and say “Fuck. This.” I don’t want to be here half the time. Does that sound suicidal? I suppose it does. I suppose I could say I’m also depressed. I’m certainly not happy. I want to be, very badly. But I haven’t been in SO long. I thought possibly, “Once we get settled in our own place it’ll all be different.” Well, I do love my condo, the location, and living on our own. But it just goes to show that material things don’t make you happy. (I’m pretty satisfied that I have a roof over my head. You know what I mean).

I don’t know how many times I can blog about how I’m not where I want to be in life, and that being on my feet for 40 hours a week is killing me, etc, etc. But that’s a big part of the problem. My fellow fibro fighters will appreciate this work story. I’m a pharmacy technician and a customer comes up to me and asks if we have a Minute Clinic at our store. (I work for CVS and some have a clinic you can go to if you have something like a sinus infection or if you need a physical, etc). I said that we didn’t but told her where the nearest one was. She proceeded to explain that she was in NYC the day before and had a blister on her foot and she didn’t know what to do because it hurt. I paused. What I wanted to say was, “A blister? You have a FUCKING BLISTER and you want to go to a clinic? You’ve gone out of your way to complain about a BLISTER? GET A GOD DAMN BAND-AID AND GET OUT OF MY FACE!” Instead I said “Let me get the pharmacist, she can assist you.” As I limped over to where my pharmacist was, I thought “How much longer can I do this?” I hate to judge people because I hate being judged and getting the “You don’t look sick” routine, but certain situations like that will put me over the edge.

I’m listening to music, which usually calms me down. I love my 90’s stuff obviously because it was the best decade ever, but I have quite the collection. I’ve said it before and I’ll say it again, it’s my therapy. I always feel so alone. I have a husband, I have some close friends and family members, but I can’t talk to them. I don’t know what to say. When someone says “What’s wrong?” I think “Where the hell do I start?” Could things be worse? Of course. But I hate when people say that. That doesn’t solve anything. It only makes me feel guilty for being miserable.

This post was random and negative but I needed to vent. I’m sick of putting on the fake smile every day. I’m sick of work and plans and everything else. The next 2 weeks will be rough. 10 days of work with 1 day off in between. HA, I have absolutely no idea how I’m going to do that without dying. But this is my life…

Song of the Day: “Wonderful” by Everclear – “Some days I hate everything, I hate everything, everyone and everything. Please don’t tell me everything is wonderful now.”

An Uncertain Future

On June 9, my husband and I will have been married for 10 months already. Of course we frequently get the “When are you having kids?” question, and we are both in the same mindset: We do want children eventually, but not right now. We just bought a condo and we’re not mentally or financially ready to bring a child into the world just yet. The hard part is for me, there’s one more reason to add to that list. It’s the “physical” reason. I’m terrified to get pregnant. I don’t know what the pain will be like and to not be able to take my medications? I’d probably die. Then I think about if I possibly got past the pregnancy… to raise a child? I can’t even take care of myself. I work full-time and when I get home I crash. I get in my pajamas, scarf down some food (not necessarily a meal), and get in bed. I can’t function with the pain and exhaustion. It’s yet another thing in my life that looks like it won’t go according to plan. Honestly, we’re just getting by right now with our combined income. We’d have to have new/better positions or jobs to even think about children. I’ve been thinking about it more often lately and it’s become more real while writing this post. I know I don’t have to figure this out right now, but it’s certainly not a subject that will go away. My fibro has gotten worse over the past year. My capabilities are so limited. I can say “I wish things were different”, “I wish I wasn’t in pain”, but what’s the point? I have to learn how to live and function to the best of my ability. I try my best every day and I push myself more often than not. I have to work… I don’t have a choice. I hope to get a different job in the next couple years since working at a retail pharmacy is as mentally draining for me as it is physically. If I take the exam to become a licensed pharmacy technician I have more opportunities to look into. I have the study guides and everything but finding the time and the energy has been tough, especially lately.

Ok, I went off on a little tangent there, but it all falls within my “uncertain future” category. This wasn’t an easy post to write. It’s as if I finally faced reality and realized exactly how much fibromyalgia has impacted my life. With that said, I’m exhausted and I have to rest up for another long day tomorrow.

Thanks for reading.