Old 10-09-2013, 11:12 AM #1
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Post I have Fibromyalgia

Hello,
I am new here, but I am here to tell you my story and continue to tell how I live with fibromyalgia and it's complications.

To start with I need to tell you what fibromyalgia is, and that is easier said than done. Wikipedia defines fibromyalgia as: Fibromyalgia (FM or FMS) is characterized by chronic widespread pain and allodynia (a heightened and painful response to pressure). Its exact cause is unknown but is believed to involve psychological, genetic, neurobiological and environmental factors. Fibromyalgia symptoms are not restricted to pain, leading to the use of the alternative term fibromyalgia syndrome for the condition. Other symptoms include debilitating fatigue, sleep disturbance, and joint stiffness. Some patients also report difficulty with swallowing, bowel and bladder abnormalities, numbness and tingling, and cognitive dysfunction.

My story is this:
I will start by telling you that previous to 2005 I was as healthy as a horse. I actually was working 3 jobs (1 FT and 2 PT). Then in Jan 2005 I was in a very bad car crash. My initial injuries were a severely broken heal bone, breaks in each of my hands and many bumps & bruises. The prognosis was actually very good. The injuries themselves healed very well. But, from the start I was experiencing extreme amounts of pain that my Drs could not explain. The trauma to my foot actually ended up causing severe degenerative arthritis in both my ankle joint and my subtalar joint (also located in the ankle area). All the pain I was continuing to experience was essentially chalked up to the injuries and then the severe arthritis. I often tell people there are more pictures of my foot at the hospital/clinic than there are of my face anywhere else. This is how often I was seeing Drs for these problems. As time went on I began having other problems. But I really was not to heavily concerned with them because it was the pain and immobility that was my biggest concern. I would bring things up when I would see my primary care Dr, but since I was not overly concerned about these things they were sort of dismissed. Some of these things include: frequent urination, really bad headaches, insomnia, and unrestful sleep, being tired all the time, seeming a little more confused than normal, forgetting more things than normal, some anxiety feelings that I had never had before, irritable for no reason, bruising more easily, just to name a few. But as I mentioned all this seemed minor compared the other pain I was experiencing. This didn't all start at once. It was a gradual thing over time. Then in 2009 I was started having severe abdominal cramps and nausea. Obviously not thinking any of this was connected. I made an appointment with my Dr. He ran many tests and actually did a gastriscope. All of which turned up nothing. So I was diagnosed with IBS (Irritable Bowel/Bladder Syndrome). But things were not getting any better. By July of 2009 my employer asked me take a leave of absence to get my medical issues figured out. After much evaluation and testing and many medications I was finally diagnosed with fibromyalgia.

At first I was overjoyed to finally have a diagnosis. I thought great now we can treat the problem and I will get relief. Well I thought that until I started learning about what it is and that it really isn't known exactly what it is. This also means they really don't know how to cure it or "fix" it. They have medications that seem to relieve some of the symptoms, which is better than nothing, but still hard to deal with.

To this day I have not returned to work. I am still fighting to get Social Security Disability. But it is an uphill battle.

The things I currently deal with regularly are: Every inch of my skin burns (if you think of the worst sunburn you have ever had, that comes close to what every inch of my skin feels like every minute), frequent severe headaches (by severe I mean 5 Excedrin Migraine make the headache tolerable, but still there), Mood Swings, Fibro Fog (which is an absolutely horrible memory, basically if I don't put something in my calendar in my phone with an alarm I will forget it, not might, will), Fibro Fog also means things like driving home and not even realizing to turn onto your own street until you are passed the street, then go out of your way to turn around and get where you need to be, Abdominal cramps for what seems to be no reason, Urinary & Bowel leaking - this also creates a greater risk for infections, Fatigue, Depression, Insomnia & unrestful sleep.

Then if I do anything I am sure to experience a "flare" within a day or two. The severity of the flare is completely related to the amount of exertion spent for the activity I did. For obvious reasons the more physically involved the activity the worse it is. But just last past weekend I went to a 2 1/2 hr play on a Fri and then on Sun went to a local baseball game. Both of these events were tickets that were given to us and were a use it or lose it type thing. Normally I avoid doing more than one thing or event in a week. But in this situation I really didn't have a choice. But I paid later I had a very severe flare that lasted several days. And this was all because I allowed myself to enjoy a couple events where I would sit and watch the event for a few hours over a couple days.

To define a flare: a flare is an increase in the number and/or intensity of symptoms. Worsening pain and fatigue are generally the first two symptoms noticed in a fibro-flare. But other symptoms like poor sleep, increased cognitive dysfunction and digestive disturbances are often experienced as well. Often these symptoms make it nearly impossible to even get out of bed. Some flares only last for a day or two but others may continue for several weeks or even months. It's those long flares that are the hardest to deal with. But every flare is completely disabling.

So now I have told my story. I want my posts to reflect what I am going thru. I am hoping to post at least once a week or more so stay tuned.

Lady-Carissa
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Old 10-09-2013, 11:13 AM #2
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Post Re: I have Fibromyalgia

In my last post I said I wanted to make a new post at least once a week. But I thought I would write today.
Below I have a link to my first post.
.
The reason I chose to write today is I wanted to tell you how I am feeling this today. To precede this I want to tell you my events the past couple days. Yesterday (Sunday) my husband, daughter & I went to a friend’s house for dinner. Then we came home. This morning I had to make a couple phone calls. Then I took a shower and got dressed. Before I took my shower my skin was burning more than usual. It was extremely uncomfortable. I could barely tolerate to sit while I made my phone calls. Then I went and took a shower which I was dreading, but I needed as I had a couple places I had to go today. If I had nowhere to go I think I would just not taken the shower and wrapped myself in cool towels. Sometimes that can help provide some relief to the burning skin feeling. Once in the shower the water felt like someone slapping me over and over. It was so painful. So needless to say it was a very quick shower. Then my daughter and I went to our appointment that we had. Unfortunately, we have more to do tomorrow and Wed. This is going to be a very long week & next week will be even worse I fear.
.

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Old 10-09-2013, 11:15 AM #3
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Default Re: I have Fibromyalgia

Post #3 – August 18th, 2013:

Well it has been a very long week. I started the week already in a flare. And I had training this week to be a Stand By Bus Aide. Meaning I only work when I am able to and if they need a sub. Unfortunately, my training was with the full-time aides on their schedule and it was the only way I could do it. So every week day this past week I had something to do for training. Most of it was classroom style. For most this would be considered very easy days. For me it was very tough. Everything suffered, already being in a flare to start with only made it worse. I would have loved to just take the time to work thru this flare. But that wasn't able to happen. So training all week just aggravated it more each day. Sitting for even a couple hours was miserable. My back & legs burned so bad. By the end of each day I had a severe headache. All I could do is go home and lay down. The last day was only a half day, but it was walking around to different buses they were demonstrating the different things we learned and then each person in our group needing to do the activity to show that you knew how to do it. All in all there wasn't anything that was very difficult at all. But, having fibromyalgia and being so far into a severe flare it was horrible. I managed to complete all the tasks.

I am paying for this now though. I knew I would be. But I just wish I could be "normal", if there is such a thing. Yesterday I could not even walk thru my apartment on my own I needed my walker and even then I was in extreme pain. Of course, my IBS is acting up very severely. So the option of not moving around is hopeless. I have to "run" (feels like it to me, but I am sure it more turtle speed) to the bathroom what seems like every 10 minutes. I have actually contemplated just staying in the bathroom. Of course, with all this going on it brings on the depression and as much as you don't want to, you sort of start feeling sorry for yourself or more accurately angry at yourself that you can’t do the most mundane of tasks.

This will be the first time that when in the middle of a flare I wasn't able to just lay low and relax. So it will be informative to see just exactly how long this flare will last and how severe it will be.

As I sit here typing this, I am completely miserable. Everything touching the reclining couch seat that I am currently in is on fire. As much as I would like some relief it hurts even worse to try to stand up. So it is completely a choose your evil scenario. Later I plan to try to take a shower or bath, probably with cool water. The warm water seems to burn my skin more. My mom had gotten me some body wash and lotion that made is with oatmeal. It is supposed to be good for calming skin. It does actually seem to provide some relief. It may only be short lived. But even just a little relief for a short time is better than no relief.

So I am going to close this for now. I will try to keep you updated on my experiences with this flare and anything I find for any form of relief.

Lady Carissa
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Old 10-09-2013, 11:15 AM #4
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Post #4 – Sept 2nd, 2013
Hello,

I first have to apologize. My plan was to write something at least once a week. Well I skipped a week. I know most of you will think "oh, it’s ok" but for me it really isn't. I didn't write last week because I was really down. The depression was really getting to me. I will explain more on that in a moment. But the thing is the point in me making these posts is a real life view on how I live with my fibromyalgia. So really last week would have been a good time to write. Not just when times are good, well as good as they can be anyway.

So the last two weeks I have been very sore. This flare that I have been going thru has been really bad. The pain has brought me to tears nearly daily. Of course, I try my best to not let anyone know. Mostly because it makes the people around me feel really bad and want to do something to help. But there is nothing they can do. So for me most times it seems easier to suffer in silence. My skin all over my legs and back has felt on fire. It is a constant thing. I get no relief. I truly wish I could just find a way to be able to take a break from it. My shoulders have ached so bad, just reaching for my drink next to me seemed to be a challenge. The degenerative arthritis in my ankle has been acting up so bad as well. Most days this past week I have had to use my walker just to move around. Before my car crash 8 1/2 years ago I had no health issues. Life seemed to be going so well for me. I was making good money, I was happy in my work and in my personal life. Then in the matter of a few seconds my entire life changed, albeit a gradual change over a few years’ time. But, in 9 years I have gone from no health issues to this list: Fibrositis, Irritable Bowel/Bladder Syndrome, high blood pressure, severe degenerative arthritis, Osteoporosis, Amenorrhea, Vertigo, Migraines, Sleep Apnea, Restless Leg Syndrome, hemorrhoids, obesity and depression. Is it any wonder that the depression would be in there with all of that to deal with. As a little background I have been overweight my entire life. After having gastric bypass surgery I had actually gotten down to a size 16 from a size 32W. But after the car crash my mobility has been drastically impaired and I have gained back weight. Thankfully not near what I was, but still a lot more than I would like.

These past couple weeks I have really been feeling pretty sorry for myself. A place I really hate to be, but can't seem to pull myself out very easily. Many days I just wish I was another person in another time. I would say just wasn't here to deal with all this. But most of you would think I was talking about ending my life, which is not at all what I mean. Just that if I wasn't here to deal with all this it would be so much easier for me and all around me. Most of the time I feel like such a burden on those around me. In fact, I know I have become one to some that I felt closest too. They don't even call me anymore to let me know when they are doing things. Of course, I can't blame them. How many times would you call a person to join you and be told they can't before you stop calling. The reasons I can't often fall into two categories, to much pain can't go or no money (because not working) can't go. So as I said I can't blame them. But this means that my days are generally filled with sitting around my apartment basically doing nothing. As much as I would like to get up and clean something and do something to feel productive so often due to pain I just can't. Then we I feel I can maybe do something I realize just how much needs to be done and slump back into my chair and figure what's the use. I won't be able to even make a dent. I have relied on my husband recently to do more than his fair share. This makes me feel even worse. I should be doing so much more. Or least that is what I tell myself. I mean I don't work, don't really have anything else to do. So why can't I do these things. I should be doing these things. But I can't.

I have started seeing a psychologist again recently. I am not sure if it will help, but something is needed. This pity party I throw for myself in my head is getting tiring. Even though on the outside I do my best to not let anyone see exactly what I am really feeling. It is really not their burden to deal with.

So hopefully, I will not find myself skipping anymore weeks. I would like to say this is a promise. But, unfortunately, I think it would be a promise I would at some point end up breaking. So I will say that I will try my hardest to not skip anymore weeks.

So with that, I am going to close for now.
Lady Carissa
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Old 10-09-2013, 11:17 AM #5
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Post #5 – Sept 18, 2013
Well, since my last post I have been pretty busy. Well at least it seems that way. Most of it comes down to helping my mom with a task she took on at church. She is really struggling to actually do it. So the solver that I am she relies on me to help. The problem that this creates is that I spend even a little time working on this for her and anything of my own that I need to do doesn’t get done. Not to mention my husband’s car broke down. We were able to get a computer sensor replaced that was bad. But then found out the fuel pump was also bad. So repairing it had to wait. But that meant we only had one vehicle. So if I wanted to make sure I had a vehicle for the day while he was at work I would have to get up early take him to work, come home and also return to pick him up when he got off. Thankfully we should be able to get that repaired tomorrow. All this has created another problem – needing to spend money we really don’t have. Since I am unable to work because of the fibromyalgia and have not been approved for Social Security, yet, my husband’s income is the only income we have. This makes it really hard to pay bills. Then you throw in an unexpected expense like car repair and something has to give somewhere. So here I sit worried about how bills will get paid or if they will get paid and what will get shut off. These are the moments when I just want to check out for a little while.

On an upside this past weekend we went with my cousins to Minneapolis to go to the Mall of America one day and the Renaissance Festival the second day. It was a lot of fun. We took my daughter, who just moved here in May after her HS graduation. She had never been to either. So it was enjoyable to see it thru her eyes. Of course, it was a lot of walking. I had my rolling walker. But it still took an awful lot out of me. But I push thru because I wanted her to be able to experience it all. But no I am paying for it. This is my life. I choose to do an activity because I know I will enjoy it and I pay for that choice later. I know how so many people with fibromyalgia become hermits or home bodies. Whether it is because of financial limitations or they just don’t want to deal with the aftermath of choosing to do something they enjoy. I often find myself evaluating the benefit versus the cost in everything I do. Because anything I choose to do will have a cost. Unfortunately, much of the time the cost outweighs the benefit and I choose to not do anything. It is unfortunate that for myself and others with this debilitating condition we have to think about if we are willing to suffer just to spend time with friends or family. So many “normal” people take this for granted and don’t realize all that those of us with a disabling condition give up. They are not choices we want to make. Often an event or get together that seems like almost nothing at all will make it so you are unable to even get out of bed for a week. If the “normal” people could understand this they would possibly have a little better understanding of a small part of what we “un-normal” people deal with. And that would just be the tip of the iceberg.

But with the activities of this past weekend I am paying quite heavily this week. I can’t seem to focus for very long on anything. I am extremely tired., but can’t fall asleep. I am in pain all over. To some extent I almost feel I am in pain in places I didn’t even know could hurt. So I am going to close this for now. I hope this finds you in a better place than I am right now.

Lady Carissa
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Old 10-09-2013, 11:17 AM #6
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Post #6 – Sept 25, 2013
Well this has been a tough week. I have been in a flare. I am sure it is from the activity over the weekend in the cities at the Mall of America and the Renaissance Festival. It saddens me that I can not attend these types of things without paying for it later. I love the activities. But so often I just want to not do them because I really don’t want to deal with the consequences.

To discuss my symptoms for several days I have not been able to sleep at night. I may doze off for a while here and there, but no quality sleep. If I try to go to bed, I just wake up several times thru the night. My hips have been in so much pain. It hurts to sit, it hurts to stand, it just hurts. I have pains in so many other areas. But it seems to vary from moment to moment what is hurting when. I have been beyond tired. All of this has made me sort of cranky as well, which means I get irritated so easily. I have gotten upset with my family sometimes for what seems to be the smallest reasons. It is not fair to them. I only hope they are actually as understanding as they seem to be. But I know it is hard on them too! Sometimes I just feel like I should go hibernate somewhere, it might be better for all. But I also know that in reality it really won’t help anything.

My stress has been really high this week too. I worry about how rent is getting paid. I worry about how the electricity bill is getting paid. Bills get behind. If I could just get approved for Social Security there would be some relief there. The social security process is such a long one. Sometimes I honestly wonder if the SS Administration wants you living in a card board box before for they will actually approve you. I really don’t understand the system. I can’t work. I know this, my doctors know this and employers have told me this. What more proof do they need?

I really don’t know what to do anymore. I feel like I have exhausted everything. Is this the life I am resigned to live. In poverty worrying about what food am I am going to serve my family from day to day. Not because I don’t know what to make but because I don’t know if I have food or money to be able to feed them.

I am so tired. I just want it to all go away.

Lady Carissa
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Old 10-09-2013, 11:17 AM #7
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Post #7 – September 29, 2013
Well, as the symptoms of my flare seemed to be easing I was reminded just how bad the fibro fog really can be. I had two places to go. On the way I turned in to the wrong parking lot and had to turn around and go into the right one. Then on the way home I turned on a wrong street. As I was turning I thought I was turning onto my street. Instead of doing a U-Turn I figured I would just go up to the next intersection and get over to my street that way. Being a little unfamiliar with that area specifically I actually ended up somewhat lost. Of course, my family & I had a good laugh about this and I try to find the humor in it. My daughter, who was in the car and I commented on being able to look at the nice houses along the way. My husband very sarcastically commented that he just hopes that I don’t ever forget that I married him. I had to respond with – who are you and why are you in my house? LOL! But, it really is frustrating. It is hard to think about the fact that I actually got lost on my way home. Maybe more of it is the not knowing how much worse could this really get. This has been an ongoing problem, turning onto wrong streets. But, does it mean in the future I will need to rely on others to get places because I can’t get there myself. If I would ever get to a point where I can’t I don’t know how I will handle that.

Another development in my life that has caused a lot of stress is my daughter who lived in FL moved here to ND when she graduated HS in May. For a slight bit of background information she has mild developmental disabilities. So these last 4 months have been a bit stressful. We have the adjustment to a new place, new rules & new living situation to deal with. But we also have the fact that she is mentally a young teenager. Now I am sure most of you reading this either have had teenagers or maybe remember a little of how you were as a teenager. This of course means that I being an adult parental figure know absolutely nothing in her mind. Then add to that that she has not lived with me since she was about 4 years old. So I don’t have years of her just needing to listen to me in my arsenal. So much of the time I have to try to battle this as a friend looking out for what is best for her. But, that has its own challenges as well. So all in all it creates a lot of stress in my life. It is what is best for her to be here. And to me it is a priority to ensure that what is happening in her life is what is best for her. Of course, I do allow natural consequences to take precedent if it is not harmful to her. If this wasn’t such a priority to me I would seriously have to consider whether or not I could really handle the stress of her being so closely connected to my life. And I can tell you there are plenty of times that I seriously wonder if I can really do this.

One other major stress I have going on in my life right this week is financial. My husband’s car broke down. We had to get it repaired because this is how he gets to and from work. While it was broke down I had to drive him to work and pick him up. This was physically pretty hard on me. I needed my vehicle because of appointments, otherwise I would have just let him take it and not worry about it. But, after taking him to work, coming home & going to my appointment(s) I was wore out for the day. I really dreaded having to go pick him up. Something so simple and I just had so little energy to go get him. But fixing the car costs money. Since his income is the only income we have right now we have nothing left over. We weren’t able to pay September rent yet and October is just a couple days away. I am so afraid they will start an eviction process. I have tried getting assistance from every agency I can think of and have asked many if they know of any other agencies. I just don’t know where to turn with it. I never knew coming up with $595 would be so difficult.

So other than that this week has been basically uneventful, LOL. As if all this isn’t enough!

Well I will close for now. Will let you know next week how all this stress takes its toll on me.

Lady Carissa
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Old 10-09-2013, 11:17 AM #8
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Post #8 – Oct 8th, 2013
Well to address the financial worries of last week first. I got notice that my husband was now vested in his 401K. That news meant that we were able to take make a hardship request from the account. It really could not have come with better timing. Of course, that meant several phone calls and quite a bit of organization on my part to get the entire transaction taken care of. But it was a huge release of stress once we got the money and rent was paid. Financially things are not perfect by any means. But at least we are not in dire straits at the moment and at risk of become homeless.

The stress of the previous week definitely can be considered a major contributing factor to the flare I experienced this week. Thankfully, I have learned to sense when one is starting and know that I just need to “check-out” of everything I am doing to allow myself to relax as much as possible, unless it is a huge priority and cannot wait. The major effects of this flare thankfully were only at their worst for a couple days. On the worst day I had no energy what so ever. If I was in bed or sitting in my recliner I would get up to try to do something. No sooner than I would get up I would feel like I needed to sit or lie back down or I would fall down from exhaustion. Talk about an absolutely worthless day.

So often I really don’t want my family to worry about me so I end up masking my pain and exhaustion from them. There is nothing they can do to help as much as they would like to. It really hurts me emotionally to see the pain in their faces from the fact that they know I am hurting and they can’t do anything to help. So I try not to let them see it. But in the long run this hurts me even more. The reason is when my family really has no clue how bad things really are they have little understanding for what I am going thru. This is due to no fault of their own. The whole thing is a lose-lose situation. If I let them see what I am truly feeling we all end up hurting because they are unable to help me. But if I don’t let them see then we all end up hurting because they cannot understand what I am going thru. I don’t know which loss is better.

Then to make things even more fun, last night (well actually all early morning) I spent 5 hrs in the emergency room. I was having severe stomach pains. It started out with feeling pretty bad cramps. I had these feelings before and end up in the hospital for a week with a bowel obstruction. As the pain got worse & worse I finally decided I needed to go into the hospital to get it checked out. After 3 different IV pain meds and IV nausea medication of the course of a 3 ˝ hour time span just to keep the pain at a tolerable level, x-rays and a contrast CT scan later it was determined that I had a partial bowel obstruction. Because it was not completely blocked they were able to send me home with pain meds, nausea meds and instruction to slowly drink a 10 oz bottle of magnesium citrate (bought over the counter at Walmart for 98˘). About 2-3 hours after finishing drinking my bottle I got to go to the bathroom. I find it funny how you celebrate moments like that. Worst part is I spent the rest of my evening in the bathroom on & off. Yeah, it was so much fun. The ER Dr told me I have a constricted area in my intestines due to scar tissue. He says I will continue to have problems that I will have to deal with. He also said that I may need surgery to correct the issue. I will need to talk to my primary care Dr about this and see what he suggests.

On the Social Security front, I submitted my third initial application for SSDI benefits on September 4th. I got a call today from Social Security to ask a few questions, complete the supplemental application for SSI as well and forward the two applications to a processor to start the process. Of course, this is just the beginning. I fully expect the initial application to be denied and I will need to appeal. Most likely that will be denied as well and I will need to appeal again and wait for a hearing in front of an Administrative Law Judge. Of course, this is what I speculate will happen as I have been thru this twice before. This time around though I have to be extremely proactive with making sure my medical records all discuss what my limitations are and how each of my symptoms are affecting me. I need to get approved this time around. If I don’t I will never be able to apply for SSDI anymore as I will not have enough work credits as of Dec 2014.

Well I am going to wrap this up for now.
Lady-Carissa
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Old 10-09-2013, 11:31 AM #9
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Default Re: I have Fibromyalgia

Hi there and welcome to the forum. Maybe you might want to consider started a blog entry here. To do that go to the top of page where it says Blogs, and click on that. Then click My Blog, and look on the left hand side where it says Post to my Blog, to make your entries.

You may share your story but No Links to other websites or blogs are allowed on the forum.

Otherwise I hope you will join in, in asking questions and suppling answers within the forum topic's. We do our best to help others through the knowledge of what has worked for us, and what does not work in our own lives.

I look forward to seeing your name around this forum.
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Old 10-09-2013, 06:01 PM #10
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Default Re: I have Fibromyalgia

Lady-Carissa,
I have taken time to read through your posts and find a lot of things similar to what I have gone through over the years. This mention of your skin feeling like it is sunburnt or on fire, can be the result of allergies to medications or over-the-counter treatments. It is also something I have heard diabetic's speak of and sometimes can be a result of having different forms of neuropathy. Has any of your doctors had a clue about what might be causing this pain? Have you seen a rheumatologist? I understand the problems of getting SSI or SSD, it took me seven years of appeals. Do you qualify for food stamps or rent assistance? Have you ever seen a skin doctor?

Lots of places around the country have government run medical centers that charge on a sliding scale. Although, right now they may be closed due to the government shut-down, you might be able to see specialists through them for next to nothing. Please tell us more about how things are going in regards to your doctors, as in do they believe your symptoms of fibro and do they have a willingness to help you? We understand the pain and fear that you are going through every day.
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Old 10-10-2013, 09:59 PM #11
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Default Re: I have Fibromyalgia

Hi Lady Carissa,

You should consider starting a blog on this site; I think a lot of people would like to follow along and the Blog format might be better suited to your lengthy writing style. Let me know if you're interested.

You can start a blog here: Fibromyalgia Forum and Support Group - Blogs
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Old 10-11-2013, 09:02 PM #12
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Default Re: I have Fibromyalgia

Quote:
Originally Posted by Lady-Carissa View Post
Post #5 – Sept 18, 2013
Well, since my last post I have been pretty busy. Well at least it seems that way. Most of it comes down to helping my mom with a task she took on at church. She is really struggling to actually do it. So the solver that I am she relies on me to help. The problem that this creates is that I spend even a little time working on this for her and anything of my own that I need to do doesn’t get done. Not to mention my husband’s car broke down. We were able to get a computer sensor replaced that was bad. But then found out the fuel pump was also bad. So repairing it had to wait. But that meant we only had one vehicle. So if I wanted to make sure I had a vehicle for the day while he was at work I would have to get up early take him to work, come home and also return to pick him up when he got off. Thankfully we should be able to get that repaired tomorrow. All this has created another problem – needing to spend money we really don’t have. Since I am unable to work because of the fibromyalgia and have not been approved for Social Security, yet, my husband’s income is the only income we have. This makes it really hard to pay bills. Then you throw in an unexpected expense like car repair and something has to give somewhere. So here I sit worried about how bills will get paid or if they will get paid and what will get shut off. These are the moments when I just want to check out for a little while.

On an upside this past weekend we went with my cousins to Minneapolis to go to the Mall of America one day and the Renaissance Festival the second day. It was a lot of fun. We took my daughter, who just moved here in May after her HS graduation. She had never been to either. So it was enjoyable to see it thru her eyes. Of course, it was a lot of walking. I had my rolling walker. But it still took an awful lot out of me. But I push thru because I wanted her to be able to experience it all. But no I am paying for it. This is my life. I choose to do an activity because I know I will enjoy it and I pay for that choice later. I know how so many people with fibromyalgia become hermits or home bodies. Whether it is because of financial limitations or they just don’t want to deal with the aftermath of choosing to do something they enjoy. I often find myself evaluating the benefit versus the cost in everything I do. Because anything I choose to do will have a cost. Unfortunately, much of the time the cost outweighs the benefit and I choose to not do anything. It is unfortunate that for myself and others with this debilitating condition we have to think about if we are willing to suffer just to spend time with friends or family. So many “normal” people take this for granted and don’t realize all that those of us with a disabling condition give up. They are not choices we want to make. Often an event or get together that seems like almost nothing at all will make it so you are unable to even get out of bed for a week. If the “normal” people could understand this they would possibly have a little better understanding of a small part of what we “un-normal” people deal with. And that would just be the tip of the iceberg.

But with the activities of this past weekend I am paying quite heavily this week. I can’t seem to focus for very long on anything. I am extremely tired., but can’t fall asleep. I am in pain all over. To some extent I almost feel I am in pain in places I didn’t even know could hurt. So I am going to close this for now. I hope this finds you in a better place than I am right now.

Lady Carissa
Hi Lady Carissa,
I am new to this forum and have been reading your posts. I can definitely relate to life before and life after! I know what it's like to have to pick and choose your activity or outing and then pay the price! And yes, it's even worse when you push through a few days or multiple things as to not let your child down or you think, the heck with it, I need to have some fun! Oh I have done that many times and then I am "down for the count" as I say and I hear you about hurting in new places that didn't hurt before! I think we must be all Type 'A' personalities that end up with this. Have you ever thought about that? I used to be able to do circles around people, raised my 2 boys alone while working F/T and doing various part-time jobs to bring in extra money. I am now on my own with my 12 year old daughter after a 2nd marriage that failed, 55 yrs old now and all my daughter has known is a sick mom. I hate that for her. So just wanted to say I hear you and can feel your frustration and pain. I am sooo glad I found this forum. Take care! Catliz
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Old 12-21-2013, 06:20 PM #13
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Default Re: I have Fibromyalgia

Lady Carissa. Have you ever come across Herpes (HSV 1 and/or 2) as being a factor with your symptoms? I have been dealing with my own complications and ailments since June of this year, and am sold that all this is the result of the Herpes virus that I contracted in mid-May '13. Several users in the Herpes Coldsore Forum complain of neurologic-related symptoms much like yours and mine. Here's my VERY shortened list: Appetite loss, malaise after workouts, insomnia, throat obstruction, dry mouth, inflammation in conjunctiva, heat flashes, abdomen pains, short term memory loss, temperature intolerance (being in 70 deg weather felt like being in 90 deg; being in 45 deg weather felt like being in freezing weather), sensitivity to light and sound, "moving" headaches, "moving" facial aches, muffled hearing, ringing in ears, nausea, joint pain, eyeball pain and swelling, eary sensation when concentrating (similar to what u feel when someone scratches chalkboard, body twitchy movements, laryngitis, sleep disturbances, severe asthma, "nerve" pain, difficulty swallowing, difficulty of food going down to stomach.

I discovered that Valtrex (anti-viral) has been the only drug that provides sufficient therapy. I still experience problems, but it's not nearly as bad. I take 1 gram once daily. There are several articles that were published over the past 30 years that discovered "weird" consequences as the result of the Herpes virus infecting other parts of our body, e.g. gut, esophagus, throat, airways, intestines. There was story published 5 days ago describing an effort by a group of scientists that are pushing clinical trials of a drug that combines Valtrex and Celebrex. The head scientist (a Surgeon) noticed a pattern with FM patients that were doing very well using anti-virals.

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