Category Archives: fibro fog

Writing through a fog…

I’m writing through a fog here. Hell I live in a fog what am I talking about. I’m lucky to remember my name some days! I was asked for my phone number yesterday or the day before that (hell I don’t know for sure when it was now that I think of it) but anyways, I completely drew a blank! I had NO FREAKIN’ CLUE! I had to say give me just a moment, and it took me what felt like a lifetime to remember what the hell it was to give it to the lady. After that I programmed the number into my own cell phone so that if that happened again all I had to do was open my phone and access the first name in my list. Isn’t that sad? I was so embarrassed! I cried after I got off the phone with the lady because I felt so stupid that I couldn’t recall my own damn number.

I had been having problems for a few days leading up to that event with my memory. It’s fibro fog I know but it can be pretty damn scary. Sometimes it makes you wonder if you are forgetting shit for good. I panicked a lot when it hits me suddenly. That just makes it worse. Lack of sleep is the cause. I am lacking some MAJOR sleep right now too!

I won’t even recall writing this in the morning I can promise you that. I wonder sometimes if this is some sign of early dementia! It really does freak me out at times the shit I can’t recall that I know I know. It is hard to explain to anyone who hasn’t actually been through it.

I’ve been very tired this past week. I had a cold for about four days and it really kicked my ass. I’m finally over it now but think it might rear its ugly head again since I’m not sleeping well.

I have not slept worth a damn in a few weeks so I guess it’s catching up to me again. It’s a cycle I’m getting use to. I will go to bed and wake up throughout the night a few times and at 4am I wake up and can’t get back to sleep so I lie there for an hour or so until finally I figure what is the fucking point and I climb out of bed aching to hell and back. I get up for a few hours suffering with pain, waiting for my pain reliever to ease my aches and I’ll fall asleep again for maybe an hour. After that I must be up for the day because my little one is up for the day then.

Now that my oldest is in school I probably won’t even go back to sleep when I get out of bed around 5am or 6am since she gets up at 7am anyway. I’ll just wait until after she goes off for the bus and hopefully catch my hour before my little one wakes for the day. I don’t use sleep aids this time of year because I want to be able to get up and function with my oldest daughter.

I went off the lyrica, and I quit taking cymbalta a few months ago. They were great for relieving some of the fibromyalgia ailments but with the tumor in my back I couldn’t take the side effects that came along with them. I HAD to quit taking them sadly. I gained over 40 pounds excess weight I just can’t carry simply from those medications. It is taking me a little longer then I thought to lose all that weight. I can’t do exercise due to the tumor in the back so I have to be more patient and work a little harder to lose it.

So far I’ve lost 15 pounds. I couldn’t believe I got up to 189 pounds on those medications! Most of my life I had never weighed more then 125 pounds until right before my back surgery in 2005 I was ordered by my doctor to gain enough weight to put me at my normal weight. I was 20 pounds under weight then. I did what they asked and got myself up to 140, which is what I am supposed to weigh with my height. After surgery I was diagnosed with FMS and put on some wicked medicine lyrica and cymbalta were two of them. They just packed on the pounds within ONE month I was blown up like a cow.

I have been setting small weight loss goals so that I’m less likely to be discouraged. I’ve seen a huge difference already and I really am excited about getting the other 30 pounds off. Not only will it benefit my heart, but also it will ease some of the back pain I have from carrying around all this extra weight. It will relieve some pressure on the tumor so that pain will lessen. Not to mention I will feel sexy again!! I’m already starting to feel sexy again…it has been a while.

I’m not sure what I am going to do about the winter months. They are a nightmare for me. They were even a nightmare for me when I was on lyrica and cymbalta so I can just imagine what it is going to be like now that I’m no longer taking them. I have to find a solution soon, winter is right around the corner for me here in MN and they show no mercy for anyone.

I wish I could just pack up and move south! Unfortunately that isn’t feasible so alternative roads must be traveled right now. I do plan to get the hell out of MN though. I can’t stay here with the winters. I’m hoping next spring my house will be updated enough and the housing market will have come back enough to at least allow me to put my house on the market. We’ll see what the future holds. Deep down I want to move to South Carolina. I’ve ALWAYS wanted to live there close to the beach but that is probably NOT going to happen. You have to go where you can make it financially so it might be southwest instead of southeast. I wouldn’t mind moving closer to Louisiana so that I’d have more of a chance of seeing my nieces there. I miss my old friend Kim too, their mother. I had some great times with her.

Right now though I have to come up with a plan to survive this MN winter.

I am going to try some supplements and see if they can help out some. Most medicine doctors want to put me on for fibromyalgia have major side effects that I can’t take, and the main one is weight gain.

I have to get ready for a road trip soon. I am going to be a God Mother to my nephew. I’m excited to see him and my niece. They are darling children! I haven’t seen my niece since she was just a baby and now she is two. I’ve not even held my nephew yet! The downside of living out of state from family is you miss the children growing up.

Since my pain level has been so high lately I’ve been trying to listen to Enya as much as possible to keep me as relaxed as I can. Been using heat when feasible and meditation. Most of the time though with that damn tumor it doesn’t work.

I’m so tired now I think I need to try to get to some sleep even though I know I won’t. I will still lie down to relax my muscles. Until next time…

God Bless!
JO

Conquering Fibromyalgia- new network I created, come join!

I went back on my lyrica yesterday. I couldn’t stand the pain any longer. I couldn’t do anything being off the pill. Yesterday was an OK day. I was able to drive to ChinaMart, I mean WalMart, do some dishes, and cook dinner without any major pain problems!

I wanted to lose more weight so I quit taking the lyrica but now I see that I have to be happy with my body the way it is. The extra weight is something I have to live with I guess. I’ll only be able to lose another ten pounds according to the doctor and she can’t guarantee that due to the cymbalta, and the depo birth control shot I take. Both of those put weight on users.

I decided to start a new network group. I named it Conquering Fibromyalgia. I hope that you click over and join. Help support the cause. Eventually I would love for it to turn into a huge network with people meeting locally in support groups for fibromyalgia. I don’t have anything local in my area to support me. I think there should be a local gathering of support all over the nation. The closest thing I have regarding support group is Minneapolis! I can’t drive that far so lets hope the network grows and something comes along for my local area!

Whether you believe me or not it is really hard to deal with having fibromyalgia. People who don’t have the illness have no clue what it is like. Talking with them really doesn’t help most of the time. Most of the time when you try to talk to someone who doesn’t have fibromyalgia it just escalates tension in the relationship. No matter what relationship it is, it causes tension because it is quite simple. They do not understand what it is like to live with this disease.

The network can be a place to share your own story of suffering from fibromyalgia. It could be a place for you to learn more about the illness so that you can support your friends and family. The network can be a place where you gather to discuss the difficulties you have had with the illness, whether you have it, or someone you know has it. Please come over and support the network. Help me grow it large enough so that others eventually can have a local connection of support in the area they live in.

I’ll be posting another entry later this evening about how my day went today fighting my fibromyalgia. Until next time…

GodBlessYou

Fatigue becoming unbearable, leg twitches are worrisome…MS?

I don’t know what to do about my fatigue! It is getting unbearable. I am so tired I can’t get anything done through the day. Today I was lucky to have gotten my shower. I’m drinking five to six cups of coffee a day, at least one can of mountain dew sometimes two cans, and it just isn’t helping either.

I’ve had this burning in my arms for three days now and today it was the worst. I can’t even lift my arms above my head without severe throbbing pain and burning sensations. I also have had tingling again in my toes and that is very worrisome to me. I also have had a lot of leg jerks today to which also has me worried.

I don’t know what to do anymore to ease my pain and fatigue. I just want some comfort. Right now it is so hard to even keep my eyes open I’m so damn tired. I have to post this though. I have to journal this because my memory is shit.

I can’t remember shit anymore. It’s getting very bad. I have a hard time remembering to turn oven burners off, where I set my coffee, what bills need to be paid, where I put my purse, etc.

I am going to bed very soon though because I just can’t go any longer.

I needed to vacuum today, didn’t get it done. Dishes need to be washed, didn’t get it done. I needed to dust the whole house, didn’t get done. I wanted to hang my dining room curtains up that I just bought a week ago, that didn’t get done.

You know my feet even hurt! WTF! The top of my feet hurt to the touch, the bones are so sore and I HAVE NO IDEA WHY! It hurts to walk. Crazy symptoms are appearing out of nowhere these last few months. What the hell is going on I think all day long. What could it be that they haven’t found now? I know it isn’t all fibromyalgia symptoms. Leg twitches and muscle spasms are not known to be a fibromyalgia ailment. I have been having leg muscle spasms, and they turn up in my arms, and even my back by the rib cage! My symptoms do however show up under MS when you start researching the illness.

I mean I am not worried about having MS. Worrying does no good. I just want them to figure things out so I can find some relief to what the heck is going on with me now. I hope this new neurologist is a good one and that she cares to really look into what these things could be. I have an uncle with MS so having it wouldn’t surprise me one bit. I’ll just have to find a way to live through it like I have with the nerve tumor in my back and the fibromyalgia I have been diagnosed with.

The leg twitches are driving me crazy! You know how embarrassing it is to be sitting on your couch with company over and all the sudden your leg just jerks? It is pretty damn embarrassing for me and worrisome…I am beginning to think I may have MS indeed. I just want them to find it, diagnose it, and give me medicine to help me if that is the case. I’ll have to figure out how to live with it like others who have it, it won’t be easy I am sure, but I am a survivor so dish it out I say. Thanks for reading along. I appreciate you all greatly and I wish you the best in your life, and I pray you and your families are healthy.

Well I’m off to sleep before I pass out on this keyboard. I’ll keep you posted when I can with what is going on in JustOrdinary’s world of total health hell! LOL

Until next time…

Be safe!
JO

Living With Fibromyalgia

Living with fibromyalgia isn’t easy. I have a neuroma in my back, which makes it even harder. I believe the tumor is what brought on the fibromyalgia. Experts believe that an illness or injury brings on fibromyalgia in the patients who come down with the illness. Some experts believe that people are genetically inclined to come down with the illness.

It could be either way with me. My family history is full of illness so it could have predisposed me to the illness fibromyalgia. I believe my genetics have more to do with both.

One of the hardest things for me to adjust to is limiting myself. For those of you who don’t know how fibromyalgia works let me explain a few things.

Fibromyalgia affects me everyday but every day is a different level of pain throughout my body. It doesn’t just affect one part of my body either. It affects my entire body. Fibromyalgia also works in flares. Each flare is different for each person and each flare will also vary in pain level.

When I have a flare, it usually is real bad. My flares make me feel as if I have come down with a bad case of the flu. I will have pain around my joints, and my muscles will burn like they are on fire. My legs will feel like they are weighed down with lead. I also get headaches with these flares sometimes and they are migraines. Unfortunately though I have a constant headache everyday but they have become something I have learned to just live with.

So now back to the hardest thing that I had to learn to adjust to. On a good day I have higher energy and my body feels almost normal. When I say almost normal I am referring to how I felt before all these health problems came about. It is hard for me to not over do myself. That is the most important thing to learn if you suffer from fibromyalgia. Even though you feel great and are able to do the things you want to do on the good day, if you over do yourself, the next day could be a very bad flare day. It is important to conserve some of that good energy instead of using it up in one swoop.

Another thing I’ve had to learn to do is have a routine bed time. Except on rare occasions I have set myself up to where I go to bed no later than midnight. Not to say I don’t go to bed earlier because many nights I do. I have just made the cut off midnight just so I have a limit set that I can live with the next day. If I stay up later then midnight, the next day is a very bad flare day for me every time. Sometimes it will take me two days to make up for one night of not going to bed before midnight. I have come to realize midnight is the latest my body can tolerate well enough to function the next day.

Most people with fibromyalgia seem to be helped with heating pads, hot tubs, and hot showers. I do take pretty hot showers, but usually right afterwards I got to get into bed because my legs will feel like Jell-O. That is not a normal symptom of fibromyalgia so I have to be checked for MS next month by my new neurologist.

I do find great comfort in my neck wrap. I heat that sucker up and it is like heaven touching my shoulders and neck area on tough days.

I have weakness in my arms and legs, which again are not normal symptoms for fibromyalgia so that is why the new neurologist wants to check some other things out in myself.

Fatigue is very bad for someone with fibromyalgia. My fatigue is tough to live with too. When you get tired going from one room in the house to another you know something isn’t right. Fatigue has a lot to do with the sleep disturbances fibromyalgia patients have. Most patients with fibromyalgia fail to get the restorative sleep stage through the night. Experts have found that when REM sleep begins for a person with fibromyalgia the brain has activity that begins which gives the person a feeling of being awake in the middle of night. It isn’t abnormal to wake up many times of the night if a person has fibromyalgia. I have a HUGE problem with my sleep. Right now I take stuff to help me sleep, but I am going in for a sleep study to be sure I do not have sleep apnea.

Getting diagnosed with fibromyalgia is a great hurdle for most people who actually do have it. It took me almost two years to figure out what was wrong with me and still today there are hints that I might have MS on top of fibromyalgia. It is hard to find because there is no blood test, MRI, or other diagnostic test to prove you have it. A doctor has to do an elimination process of other illnesses that fibromyalgia mimics. The two big ones are lupus and rheumatoid arthritis. It is important to be your own advocate too where your healthcare is concerned. Don’t be afraid to ask questions about suspected illnesses you might think you have that seem to be a lot like fibromyalgia. A good doctor will listen to you and take your concerns very seriously. If they are familiar with fibromyalgia they know the difficulty in diagnosing it properly.

IBS, irritable bowel syndrome, is not something I like talking about but it is a HUGE problem with most fibromyalgia sufferers too. This is why diet is a crucial part of adjusting to the illness too. They have to bring more fiber friendly foods into their diets so to avoid any major problems concerning the bowels.

There are many other things that I suffer with concerning fibromyalgia but at this point and time I just don’t have the energy to finish up with those things.

I have been living with fibromyalgia now for almost four years. I have only had a diagnosis for the illness about two years now. There is no cure for fibromyalgia so I will suffer with this for the rest of my life.

If there was any advice I’d give to someone newly diagnosed with fibromyalgia it would be to pace yourself every day, and be sure to do things for yourself to make your illness as easy to live with as possible. That will require some dedication to yourself that you may not possess. It may require you to finally put yourself first in situations you normally would not, but my advice is to do so. Not only do you deserve it, but also you will definitely need it.

Advice that could save your life

Everyone should carry a list of medicine they take on their person. What would happen if you were unconscious and taken into the emergency room? The doctors might not have a way of knowing what not to give you. What if they gave you something that interacted negatively with some of the medicine you already take? What if it was fatal? This scenario could happen very easily.

I have found that since I’ve been diagnosed with Fibromyalgia on top of having the nerve tumor in my back that it is a necessity to carry this vital information on my person at all times. The information contains the name of the medicine I am taking, how often I take it, the mg prescribed to me, and the doctor who is responsible for prescribing the medicines. For me it is a pretty long list but it could be vital information that will be needed in an emergency room someday. My husband can’t possibly remember everything I take and why would I want to add stress on him about remembering that information when I can easily just carry it on my person.

You should keep the information in a place that it can easily be found. The best place would be with your driver license. They have to look to see who you are, and while they are checking your identity, they will have stumbled across your med list. If you are unconscious and unable to give them information inside the emergency room this might be vital to your survival.