Category Archives: sleep disturbance

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

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.

Heart problem? Waiting to hear…

I had an appointment with my doctor last week and now I have to go in for a sleep apnea test. I do that on the 28th of this month. I also had to wear a heart monitor for 24 hours since I told her I had been feeling a fluttering in my chest. I still feel the flutter. I actually just had some fluttering going on as I started this post.

She thinks my constant headaches could be stemming from a sleep problem. The headaches I have are constant and just hang around. Sometimes the headaches turn into migraines but I have them 5 out of 7 days a week at least if not everyday.

I thought the headaches were a sinus problem. I suggested that to her and she said it could be but she is leaning more towards a sleeping problem since I wake up with them and they hang around. She also said since I have fibromyalgia having a sleeping disorder might just be the problem.

I haven’t heard anything yet about the heart monitor but I should be hearing something this week sometime. I had to turn it in on Friday morning.

Actually let me call her and see if any results are in…

Well they are supposed to be calling me back so I just wait. I sure hope it comes back ok.

Today I am very tired. My body feels like a semi truck hit me. I also have a headache that is just lingering around. It is very annoying. The joys of fibromyalgia! Want to join the club? Ha

I am nervous about the sleep apnea test. The test itself doesn’t worry me. I don’t like the idea of being in a different place over night away from my family. I don’t sleep well at home some nights so how the hell am I going to be able to sleep in a strange place with people watching me!? I hope they let me bring along my laptop and some movies. I’ll be so bored if they don’t. I have to check in at 9pm but I don’t go to bed until midnight. That is three hours of down time I have to figure out what to fill it with. Oh well, I’ll get the test done and it will be out of the way. Then we’ll be able to move onto the next thing we need to do.

The next thing she wants to do is put a scope down my throat! OUCH! That doesn’t sound fun at all. She thinks I might have an absorption problem. I keep going anemic and I’m not bleeding at all so something is going on. She also thinks that might be the root cause of my hair loss. She thinks B12, iron, and ferritin all combined is causing my constant hair loss. She said you could fix one but without fixing the others my hair would continuing to fall out. So I have to have blood tests done next time I go in which will be within the next few weeks.

I am going to go now and rest. I’m so tired today. I hope I get enough energy to run the vacuum later! I’ll keep you posted on the heart situation. Wish me luck.

Until next time…

Be safe

JO

Anxiety getting the best of me as the 13th gets closer???

I’ve had two nightmares in the past week and I am wondering if it is due to the anxiety level I am currently at. The first nightmare I had went like this:

I was downstairs tending to laundry and I came upstairs to check on my kids and noticed my front door was unlocked and my bedroom light was on when I glanced down the hall towards my room. The next thing I know I am being strangled from behind from a big-armed guy. I only got to see the arms of the guy and they were big, and had quite a bit of hair on them. He had me in some sort of sleeper hold and I was passing out as I tried to reach back to his jugular in attempts to break free from his grasp. As I was trying to reach the guys jugular I attempted to yell for my husband that is when I woke up.

Two days later I had another nightmare and it went like this:

I was lying in bed and had just taken my meds. I remember looking at my cell phone for the time and it was a little bit after 11pm. I had dozed off and the next thing I know someone was in the room and had their hand over my hand and mouth. I tried to fight the hand off my face but I could not. I was blinking and squirming around and then I woke up. When I woke up I was having hard time breathing.

Now I’m not sure what those nightmares mean. I think it is possible I am having them because I have very high anxiety right now about some testing I have to have done this coming week. Perhaps the nightmares represent the fact I feel like I am getting suffocated in my real life with these medical problems again. I thought that was all over for me but here I am once again having to get tests done to find out what is going on. I am so scared it will be some sort of cancer. That is one of my greatest fears. Cancer.

I’ve seen too many die from it and suffer a horrible way to leave this world behind. I don’t want that for me, or my family. Most of all as I’ve said previously in other posts, I don’t want to leave until my daughters are raised. That is all I want. I want to make sure they are raised. I’ve seen what it is like when a parent is taken from this earth and a teen or young child is left without that parent. It isn’t pretty in most cases. It wasn’t pretty in the cases I’ve seen. I don’t want my children to have to go through that.

That was the main reason I quit smoking in December of 2007. I was so determined then to put them down and NEVER pick them up again but long behold April of 2008 I ended up picking them up again and I’m still smoking them. I do have plans of trying to quit again. I promised my oldest daughter that I would try to quit again and I will keep that promise. It is just so damn hard to quit!

My mom recently reached out to me and we’ve had some pretty good talks on the phone. I’ll be writing a post about that later today to fill you all in on that stuff. I need some advice with it too so look for that post later on today sometime.

I’m going to end this one now and go try to calm my anxiety down. I need to keep myself from going into frenzies over this. I always think of the worse case scenarios. Anyway thanks for reading cyber world community. I hope that I am still in some of your prayers as the 13th creeps up for the tests. You’ve been great support for me throughout my blogging time here on word press.

Until next time….

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