A Much Calmer Night

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Boy I was hell on wheels last night (see yesterday’s post). I do have a bit of a temper, but as I said last night, I’ve never lost my cool with this friend before. As a matter of fact, I can’t even think of many friends I’ve ever lost my cool in that way with. I mean, okay, there is the friend who told me I was stupid to start blogging–by the way he sent me a random text tonight about Caillou. It actually made me laugh, but I’m not buying into the game. When we were really good friends a few years ago my youngest daughter had a bit of an obsession with Caillou. For those of you fortunate enough not to know what the heck I’m talking about, Google it. He’s a bald, whiny little boy, that complains about everything. I can’t stand that kid. Apparently my ex-friend’s (LOL) daughter was watching the show on television this evening.

Anyway, he is really the only friend that I can think of that I got into fights with. I mean really arguments. No matter how angry I am, I don’t say mean things to hurt people, and unfortunately he can’t say the same. When I argued with my friend “Lilly” the other night I was harsh, but never mean. I didn’t call her names or use mean language, or say one thing that I regret saying. What I said, she needed to hear. Whether she took it in or not, I have no idea. My guess is no, but I gave it a shot.

Today was hectic again. I feel like I have so much to do before we leave on vacation and not enough hours to get it all done. I need to do some serious cleaning tomorrow and organize the kids’ bedrooms. Even if I can just get the kitchen, living room and bathrooms set, I will be happy.

My back and hip are still pretty stiff and nothing I’m doing is really helping. I go back to the rheumatologist the week after I return from Florida, but even with all my online research, I’m just so hesitant to start anything new. I’m not great, but I’m certainly not as bad as I was during the winter. I think if I’m going to break down and try something new it will be when I’m in desperate need. I know I’ve asked a lot of questions through this blog on Lyrica and Cymbalta. Those two drugs seem to be what are commonly prescribed for fibromyalgia. The side effects make me really nervous. First of all with so many people claiming a 30lb weight gain with Lyrica, I’m super hesitant to jump on that bandwagon. I already feel as big as a house.

With Cymbalta I read things like thoughts of suicide, and other side effects. I know they have to list every single thing every person noted, but I get nervous. Right now I’m still on the Flexeril 10mg at night, but I really don’t feel like it’s doing that much. Lots of people say they feel sleepy and relaxed. I feel nothing…seriously nothing. Sometimes I wonder why I take it, but I think overall it does reduce my migraines because my neck doesn’t get as tight.

The other thing the rheumatologist is going to bring up is doing those trigger point shots again. I’m going to give those a big thumbs down for me. The first time I thought they really helped. I’m not sure if he hit a nerve, or if that’s even possible, but beginning just two days after the shots I add a marathon three-week migraine and I would prefer not to relive that experience…ever. What I might do is ask to try a different muscle relaxer, not necessarily a stronger one but possibly a different kind. Any thoughts on this? Is anyone taking something for fibro that they actually feel is helping?

It’s really difficult because I feel like the fibro is affecting all my muscles and the RA affects my joints. The combination is just not fun. I know it could be so much worse, but I’m trying to think ahead for the winter months and have some sort of plan of action in case I have a really bad winter again this year. Any help is appreciated. I know different drugs work for different people, but I’m always interested to hear what people think is actually helping them to feel better. There are dozens of medications and I’ve taken so many that I just don’t think have done anything for me. It’s just not worth the risk if it’s not helping.

Then I’ll add into the mix my yearly ob/gyn appointment. I work myself up into a frenzy each and every year, but this year I’m already a wreck. My appointment isn’t until August 5th, but I’ve already decided that I have a cyst on my ovary and I’ve probably waited too long to deal with it, and it’s going to be cancer. After all, I’m 42 and my mom died at 43, and this has been my fear all along. I don’t know how to stop the irrational fear…at least I hope it’s irrational, but I can’t shake it this year. I have been having pain on one side, similar to the type of pain I get with a cyst (which is all too common for me and they are usually normal). The truth is, I’m just scared. This is going to sound like the most conceited thing ever, but my kids won’t make it without me. I think about what their life would be like with my in-laws calling the shots. They haven’t got a chance.

So I can’t die. For that reason alone…my kids need their mother…I can’t die. It’s going to be a stressful few weeks and I see a few Xanax in my future. We do what we need to do to get by. One day at a time.

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Shots into My Neck and Shoulders and a Mommy Brag

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My day started out with my appointment with the rheumatologist. Let me start by saying I like my rheumatologist. He tolerates my online medical degree pretty well. He answers my lists of questions without frustration and has no problem going over all my tests with me each time. So the recap is…based on symptoms I have sero-negative rheumatoid arthritis. He’s basing this on the swelling and pain in my hands and feet. If this become worse at some point, we’ll consider plaquenil again, but for now we’re not doing much.

My main issue at the moment, according to the doctor, is fibromyalgia. This is causing widespread pain, stiffness, symetrical tender points, and rock-hard trigger points in my neck (right under my skull) and on the top of my shoulders (the trapezius muscle). He talked to me again about Lyrica. My biggest concern is the weight gain, with my secondary concer being all the other meds that I’m already on.

He said we could likely ditch the nightly xanax if I took the Lyrica and he would recommend a very low dose to acoid the weight gain, yet combat the widespread body pain. My thoughts on this were to give it a little more time. In general I feel better during the summer. I have less swelling and pain in the warm weather. The swimming also helps with the stiffness and range of motion. My thought was, I’m not going to opposed to trying it if it might really help, but I’m going to wait until I need it, which is likely next fall or winter when the weather starts to get cold again.

I have to believe that spring and summer are coming. I HAVE TO BELIEVE! SO instead of changing up my medications, we did trigger point injections into my traps and into the bands below my skull and one in my hip, just for fun…ok not really for fun, but because my right hip has been giving me a lot of pain. These aren’t cortisone or steroid injections, but rather injections of lidocaine and some other “caine” that I can’t remember that help relax the area. For me, the tightness in my neck and shoulders triggers my migraines and in the past the shots have helped decrease the headaches and tension through that area.

So, that’s where I am in the course of my treatment. No medication changes, though I did lobby for a new muscle relaxer. We went with the shots and are going to meet again in July unless I need to see him sooner. Right now I’m laying here with ice packs covering all the injection areas, and I’m feeling darn darn good. I might be feeling darn good because I’ve had a muscle relaxer, a xanax, and my Topamax, but does it really matter why I feel good? Let’s just be happy I feel good for the moment!

And now a mommy brag that I can’t share on Facebook and I need to share with someone! So my oldest daughter (age 9) has issues with being shy. She has worked really hard and little by little she has gotten on stage to do The Nutcracker and most recently a tiny part in The Sound of Music. Well, she came to me and said she’d really like to pursue singing instead of piano so I contacted a voice coach to discuss the possibility. I don’t know what the hell I’m doing, so I had a lot of questions.

The lady was highly recommended by the mother of the girl who played Maria in The Sound of Music, and she was kind enough to answer all my questions. She was honest with me and said that she rarely works with kids my daughter’s age because their voices are developed enough. She said the last thing she’d do is teach a child how to belt something out so if that was what I was looking for that is not her. She trains the voice appropriately and that doesn’t include yelling.

Anyway, after our chat, she agreed to audition my daughter for a possible student and we went today. She taught my daughter all these vocal exercises and helped her prepare for an audition that she’s going to do this weekend for a small part in The Wizard of Oz (it’s like I don’t even know who this kid is). I sat there and listened to my daughter and it was everything I could do not to cry.

Was she the greatest singer ever? Of course not! But she was beautiful and she had the BEST time. I have no idea whether she’ll be old enough to be a student with this teach or whether she’ll need to wait another year or two, but it was awesome to watch my shy little kid stand up and hold a note with confidence. I saw a glimpse of the girl to come, and I couldn’t be more proud of how hard she’s working.

I have no idea how many kids will be at the audition on Saturday, but frankly, just for my daughter to walk in the door is huge. It’s all about the baby steps!

 

Off to the Rheumatologist I Go

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I think the Topamax is catching up to me. I’m completely exhausted. I woke up and begrudgingly brought the kids to church, then came home and took a nap. My daughter had a friend over and luckily this girl is a doll. She played so well with my two girls and my son played in his room and finished some homework. I really can’t believe I was able to nap as long as I did, but I was so thankful because I could hardly keep my eyes open.

I do remember it being this way the first time I went on Topamax and it did get better after a few weeks. The problem is, I was exhausted BEFORE the Topamax, now I’m just ridiculous! This too shall pass. I missed a perfectly beautiful day, but I’m not going to beat myself up over it. I clearly wasn’t going to make it through without a nap.

I brought my son to his second day of travel baseball tryouts and I have to say I feel pretty good about how that went. As I mentioned yesterday, I didn’t have high hopes for him to make the team. I hope that doesn’t make me sound terrible, but I’m realistic. There are between 35-40 kids trying out and they are picking 12. To say my son is in the top 12 would not be true. He consistently gets better each year and he loves playing.

We found out today that the A-string travel team is a huge commitment, meaning they don’t want you to take vacations during that time, and we have one planned in July already. It just sounds way more demanding on time than we are looking for, so I’ll be relieved when we get the email on Wednesday that my son will be place on the B-string team. This team is still competitive with other towns, but isn’t as demanding on time, meaning you won’t have games both days on the weekends, etc.

I’m trying to have somewhat of a life here. I may be anti-social, but I do enjoy sitting by the pool and doing nothing. It’s one of my favorite past-times. I love to watch my kids swim, and if the water is warm enough (thank heavens for pool heaters) I really enjoy being in the water. Last year was the first year that I found that swimming each day made a huge difference with my rheumatoid arthritis. My swelling was non-existent and my body just felt better. I’d get in the pool with a noodle and do my crazy exercises and laps, and my kids would crack up laughing, but it really felt good.

I’m looking forward to that again…and the sun. I’m really looking forward to the sun!!

Tomorrow I am seeing the rheumatologist in the morning. As I mentioned yesterday I’m going to discuss MCTD and my thoughts on having that. I’m putting on starting Lyrica until further notice, which might be until next winter when my body decides it hates me again. I am going to ask about a different muscle relaxer because I don’t feel like the Flexeril is really doing anything anymore. I know it’s short notice, but if anyone reads this and is on a muscle relaxer for their fibromyalgia that they feel has been helpful, please let me know. I think I’d like to start there rather than go on Lyrica. I keep thinking, summer is coming, and I know I’m much better in the summer. I don’t want a huge change.

I truly appreciate any insight. I’m going to leave it up to my doctor as to whether we go the trigger point shots into my neck and under my skull again. We opted not to last time, but my migraines have been pretty powerful lately (thus the reason for starting Topamax again). I have a feeling we will discuss the options and decide on the shots, which will mean I’ll spend the afternoon icing myself. Ah…good times. The things we do to feel good. If it works, though, it’s so worth it.

 

I’m Just Not Wonder Woman Today

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It was one of those days. One of those days where I was annoyed for no reason. I was tired and woke up to a house of six children that had slept over last night, and not all of them were getting along. I was ready for them all to go home. None of them left until around 11:30, after a few rounds of sliding down the stairs in a sleeping bag and annoying the crap out of each other and me.

When they left, I laid on my bed and fell asleep for two hours. My girls were playing really nice with their Littlest Pet Shop toys and my son had tryouts for a travel baseball team. I don’t want to sound like the worst mom ever, but there is a very slim chance he will make it. He has a strong desire to be a great athlete, but he’s not quite there yet, though he consistently improves every season. There were about 35 kids trying out for 12 slots, so the way I figure, he won’t be overly disappointed if he doesn’t make it because many of his friends won’t either. In fact, many of his good friends tried to make it last year and didn’t. I’m proud of him that he wanted to try, but I don’t have my hopes up. He can still play regular baseball with the town so I’m not worried about it.

My nap was nice. I was feeling depressed today and I’m not really sure why. I am not feeling terrible, and things are going terrible, it’s just one of those days that I wanted to cry all day but I truly couldn’t tell you why. I don’t have a valid reason, and I never ended up crying.

The girls and I made a Target run for groceries and that was about it for leaving the house. I think today might just be a culmination of the craziness that’s been going on lately. I’m darn tired to thinking too much.

I have an appointment with my rheumatologist on Monday morning and I don’t even have any idea what I’m going to say. I think I want to ask about MCTD after reading a lot of your posts on the Autoimmune Mama Facebook Group. It sounds like what I’m going through. I’m just not ready to try anything new in terms of meds, with the exception of maybe a stronger muscle relaxer. The Flexeril really doesn’t seem to be helping me as much. I realized that when I went for the massage and the man practically had to use his whole body weight to get my trapezius muscles to release, and even then he thought they were still tight. So I guess, that’s the plan (glad I just worked that out).

I don’t want to start the Lyrica at this point. I know a lot of people have had good luck with it, but we’re getting to warmer weather (I hope) and I tend to feel better when it’s warm. I just don’t want to add anything new into the mix since I just re-started the Topamax. That, and I keep hearing about loads of weight gain with Lyrica. I’m fighting that uphill battle enough already!

My off-topic news of tonight…I can’t find the remote and I’m too lazy to get up so I just watched Wonder Woman. That was one of my favorite shows growing up. What a hideous show! I mean first of all, what kind of idiot works with Diana Prince 24/7 and can’t tell that she’s Wonder Woman? The invisible jet. The lasso of truth. All classic! And, Lynda Carter…holy crap is that woman gorgeous. Just plain and simple, beautiful! I finally was forced to get out of bed to change the channel when Star Trek came on and Spock’s brain was stolen by some woman. We all have our limits.

Wishing you a pain-free evening!

I Survived the Birthday Bash

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Twenty kids ranging from 6-10 running around a gymnastics facility. And that, my friends, was a darn good party. The birthday girl had a blast, and it seemed like everyone had a great time. I came home and took a nap…for two hours. Today wasn’t awful in terms of pain, so I lucked out. My hands are still stiff and in pain, but the pain is much more manageable today.

I did have a rough morning, but that’s more because everyone was annoying me. My in-laws are famous for making plans and not telling me. It’s frustrating to hear everything last minute. I like notice. I like to plan my day. They wanted to go to the movies after my daughter’s party, but it didn’t end up working out because the theater closed due to roof issues because of all the snow. Did I mention we have more coming on Tuesday?

My kids haven’t had school since last Wednesday. Heaven help me if they have a snow day on Tuesday. I don’t even know what we’re going to do tomorrow, other than number two’s project on Ireland. Number three has plenty of new toys to play with and number one needs to clean his room…badly!

I just read a post from another blogger about how alone she feels with her chronic pain, and I guess that’s really what’s been bothering me the past few days. Most people just want to hear that I feel “fine.” They don’t really want to know, even if they ask. It’s very lonely thinking most people don’t understand what it’s like just to get out of bed and walk into the kitchen on some mornings.

I’ve been feeling pretty depressed about it. I keep hoping there is an end in sight, but I’ll have a good day and then it seems to go right back to a high pain day. I haven’t had a few good days in a row in quite a while. I am feeling like Lyrica is in my future, mostly because I just want my life back. I want to go to a party and be able to run around with my kids.

I want to be on the floor being able to play games and not have trouble getting up. It’s frustrating and depressing. I’m not THAT old. I need to make a change, and right now, it’s looking like it’s medication.

I totally cheated on my gluten-free diet today and had birthday cake, but I’m getting serious again tomorrow and getting back to exercising every day, if possible. I know damn well there are days that I am not up to exercising, but on those days, I’m going to at least do some light stretching. I need to make some changes so I start to feel better about myself. I hate being heavy. I don’t like that my girls have heard me say I’m fat. I don’t want them to grow up with the issues I have.

I was a twig all my life until after number 3. Heck, two or three days after I had number one, I was back into a size 1 pants. My kids are all very lean and other than number two, they all eat well. Don’t ask me how number two survives on peanut butter crackers, waffles, pancakes, and crap.

Anyway, tomorrow is another day, but before bed I decided that I’m going to do a quick ab workout so I don’t keep putting things off until tomorrow. There is no reason I can’t start today.

I hope everyone is enjoying their weekend and is relatively pain free.

Lots of Drama on Valentine’s Day

Photo by Hathuyanna

Photo by Hathuyanna

Valentine’s Day has never been much of a big deal to me. I scheduled doctor’s appointments and hair cuts for the kids. We got pizza and watched a movie together. We watched Wall-E, which might possibly be the most boring movie I’ve ever seen.

We ended up with about 13 inches of snow and there is a huge shortage of salt in the area, so everyone is freaking out. It’s getting all sorts of media coverage. I didn’t even attempt to shovel the snow after a night of crazy loud sleeting. I knew it would be too heavy for me.

The night turned dramatic a few minutes ago with my youngest daughter. We laughed at something she said, which resulted in tears and theatrics with statements like, “My heart is broken and I just don’t know if there is anything you can do to fix it” and “No one in this family loves me.” She has a flair for drama — my own little Sophia Lauren.

The good news about today was that some of the intense pain in my hands was gone. I still have the numbness and my lower back aches, but it’s a huge step up from the pain I was in earlier in the week. My swelling has gone down quite a bit. Tonight I’m doing a lot of research on sleep, more specifically non-restorative sleep. I can’t be alone in feeling like I can sleep all night and still wake up exhausted and unrefreshed.

While sleep has been in issue for me as long as I can remember, it wasn’t until lately that I have a whole new level of exhaustion. There are many days where I can’t make it through without a nap — again, it’s a blessing that I work from home, as that might be difficult in an office. I’m not only trying learn about the stages of sleep (which will make for another blog post), but different ways to get more quality sleep.

I don’t know if you’ve tried sleep medications, either over-the-counter or prescription, but with most of them, I wake up in more of a fog than usual. I think I’ve touched on my issues with Ambien in previous blog post. I have not remembered shopping sprees on Ebay (very happy that even on meds I’m a bargain shopper) and I’ve made several phone calls and written emails that I don’t have a single memory of in the morning.

Needless to say, I need help in the area of sleep. With my rheumatologist mentioning the possibility of starting Lyrica, he did also mention that it would help me relax at night. Perhaps an added bonus. Have any of you on Lyrica seen a benefit in your quality of sleep? I’d be really interested to hear how it has affected others.

We did have a Twitter comment asking about Orencia. For any other readers on Orencia for their rheumatoid arthritis, how long did it take to begin feeling a difference? Feel free to comment here or on our Autoimmune Mama Facebook page.

Of Course the Pain Is Gone

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I believe I called it in yesterday’s blog that I’d wake up and feel much better today since I scheduled a doctor’s appointment for this morning. My hands were hardly swollen and other than feeling like a migraine is coming on, I’m doing pretty well.

My rheumatologist really wanted to believe I just had fibromyalgia since I really do fit that mold. I think he was hoping that because my swelling was minor, that it wasn’t early rheumatoid arthritis or lupus. He wants to do a bunch of blood work to check my levels. Chances are I won’t get that done tomorrow with the wonderful storm coming in, but I’ll get there on Friday.

He said that the fact that my hands were significantly swollen and stuck for two to three days before the appointment, that really is more of a rheumatic symptom. Fibro is pain all over with tenderness at the trigger point areas. I definitely have fibro. There is no question in his mind or mine, but now he is thinking that the early RA diagnosis is also correct. We’re going to see how my blood work comes back and how my pain level is over the next week.

If my blood work comes back the same as it has been, with an elevated ANA being the only thing that’s off, we are going to consider Lyrica. I need help people!! Please give me some feedback if you are on Lyrica. You can either comment on this blog post or start a conversation on the Autoimmune Mama Facebook page. I’m hoping that more of my readers will start to post their own questions or vents on the page. That’s what it is there for. I so appreciate the positive feedback. It’s just so nice to connect with people that understand what my life is like with an autoimmune disease. You all have helped me more than you know.

If my blood work comes back with an elevated RA level, I will go back on Plaquenil. I guess my main concern is that I’m currently on a ow dose of Celexa for anxiety. I tried to go off of it completely a few months ago, and I was downright evil. I think I scared my kids one day when I snapped at them. Lyrica is also for anxiety, so in my head, the plan would be to start Lyrica and go off Celexa.

My rheumatologist said it is fine to be on both as they do very different things, even though they both work for anxiety. I just don’t want to be on so much medicine. I’m trying this gluten-free diet and pretty soon I’m cutting down on sugar. I think I was supposed to start that today, but it’s my daughter’s birthday and dammit, I had ice cream and it was delicious!

I know as my condition gets worse, I will likely need more meds or different kinds of meds, but my goal is to get the pain under control with the least amount of medicine possible. The doctor did give me more pain medicine for days like I had earlier this week. I don’t mind that because I take those only when I really need them — sparingly. It’s really just the every day factor that bothers me.

So for now I’m doing nothing different until my lab work comes back. I’m going to take another muscle relaxer to help with my migraine and try and relax after a long day.

I was one of the room moms for my daughter’s class Valentine’s party, and we went out to dinner for her birthday. All three kids are still up because they are off from school until next Tuesday for February break (yay me!). All the area towns that were supposed to have school tomorrow have already announced that they will be closed because of the impending storm. Looks like we’ll be going stir crazy tomorrow since we won’t be leaving the house.

I have to laugh at all the crazy people buying enough food to be snowed in for a week. Come hell or high water, I’ll be leaving the house at some point on Friday. I hope those of you getting the storm (practically the whole east coast) stay safe and warm, and of course, pain free.

10 Things Not to Say to Someone with Fibromyalgia

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Having an invisible illness, as some call it, is hard enough without people offering “helpful” advice. Heck, there are still a lot of people that think fibromyalgia is all in our heads. If you have fibro like I do, we can assure you it’s not in our heads. The physical pain can be both excruciating and debilitating. The exhaustion and brain fog are difficult to describe.

I think every fibro sufferer could come up with a list of the top comments they’d never like to hear again, but here’s mine:

  1. You just need to get up and moving. Yes, that’s it. The problem is that getting out of bed is often a big enough ordeal. When you wake up with a numb, yet painful, arm, hip, and hands, your first thought isn’t “let’s just right out of bed and get moving.” While I do firmly believe that exercise and even light stretching can really help, but first thing in the morning is very difficult. It takes time for me to get out of bed and get going.
  2. You’re just getting older. I’m 41 (soon to be 42). I refuse to believe that’s old. Fibromyalgia doesn’t mean it takes a little longer to recover from your workout than you did at 20. Guess what? I know plenty of people in their twenties with fibro. Fibromyalgia isn’t simple aches and pains of the day. It can mean high sensitivity to touch, crippling muscle pain, migraines, fatigue, and joint pain.
  3. Maybe I have that. I’m tired a lot, too. While exhaustion is one of the symptoms of fibro, just because your life is over-scheduled and you are tired running after your children does not mean you have fibromyalgia. Every parent is tired. Everyone who works at a stressful job is likely tired. Tired doesn’t describe what it’s like to have fibromyalgia. It’s exhaustion beyond belief. It’s your body telling you that if you don’t rest, you’re going to be out of commission for days.
  4. You just need to get out of the house more. Guess what? I’d love to get out of the house more. I work from home and that was a choice I made after being laid off from small corporate America. Honestly, I feel very blessed that I’m able to work from home because I’m not sure I could do an office 9-5 anymore. I didn’t have fibro and RA when I was working in an office. I didn’t wake up with fingers that I couldn’t move for several hours at a time. I’m sure that would go over well in an office! I get out of my house as often as I can. Trust me when I tell you, I look forward to days when I feel well enough to go to an event or even just go to the store.
  5. I heard they only diagnose fibromyalgia when they can’t find anything really wrong. No one wants to hear that your doctor doesn’t believe fibromyalgia is a real disease. Anyone suffering from it can tell you the pain is not in their heads. The swelling in my hands and feet are not in my head. I’m suffering from this horrible disease and you are not helping by telling me it doesn’t really exist.
  6. Are you sure it’s not just depression? I can tell you that it is darn depressing to be in pain most of the time, but feeling depressed because you are unable to do the things you used to be able to is normal. I don’t need to talk to a psychologist about my pain, though I know many people that do. I just don’t think people should offer this suggestion because again it goes back to the disease being all in your head.
  7. Have you tried blah, blah, blah? Let me ask you this…if you were in constant pain, wouldn’t you do every bit of research you can to find a way to ease the pain. If you think I’m dumb enough not to have researched both natural and pharmaceutical products to help ease my symptoms, you are sadly mistaken. I’m sure you think you’re suggestion is helpful, but I hear these suggestions more than you realize. It gets old.
  8. That’s the disease on the commercials for the drugs with the terrible side effects like death. Gee thanks for the reminder. I happen to be contemplating taking one of those drugs at the moment, and I, too, hear the list of side effects every time I see those commercials. I know people that have had many benefits from using drugs like Lyrica and Cymbalta. I’m weighing my options and discussing the pros and cons with my doctor. You watching a commercial and reporting back on it doesn’t really factor in to the difficult decision of taking a prescription drug.
  9. But you never feel well. It’s hard enough not to feel well most, if not all of the the time. I don’t need the reminder that we’re never feeling well. What I need is a friend or family member that will listen without judgment. I need someone to just listen. You aren’t going to be able to fix the problem, but I am suffering from a disease with no cure. Different body parts are hurting all the time. Don’t ask how someone is feeling if you don’t want a real answer. I’m not humoring you with “fine” when I feel like hell.
  10. You don’t look sick. I wrote a whole blog post on this subject so I’ll keep my comments short. Having an invisible illness can be difficult because on the outside I look fine. On the inside I’m not fine. It’s a struggle to stand up after I’ve been sitting for a while. It’s difficult for me to stand too long. I actually had someone say to be yesterday that I should save the chairs at a children’s sporting event for those that really need them. How the hell do you know I don’t need one?

This whole post may seem negative, but for those of us dealing with the effects of fibromyalgia every day, it’s very hard to really explain how we feel. There are days I can’t even pinpoint what hurts. All of my skin hurts. Some days just my hands hurt; other days it’s my hip. My point is that every day is different. For me the one constant is exhaustion.

Please just consider that sufferers of fibro hear these things constantly. What you can do is listen. You can ask if we need help with anything. We may not accept the help, but we will never forget that offer. A little kindness and an attempt to understand, even when you don’t, makes a big difference.