I wonder if grandmother had FMS...

I have been thinking about my paternal grandmother (my father's mother), and whether she might have had Fibromyalgia. 

She died in 1956 at age 66, so I never knew her. In her photos, even the photos of her when she was younger - show her as fairly large - as in width - for the times. 

I know she was somewhat of a medical mystery, and my father blamed "her quack doctor" for a lot of her health problems. I know that the cause of death on her death certificate was Athlerosclerosis (hardening of the arteries), and it came from poorly managed high blood pressure.

In her photos, she looks like a nice lady, but older than her age, and probably in pain. The look on the face is familiar. The look of pain, but trying to cope.

We blame many of our health problems today on our modern foods. My grandmother was born in 1890 or so. I doubt she ever ate a Pop Tart in her life.

Do I have proof she had Fibromyalgia? No. I wish I had some letters written by her - anything like that. But all I have are photos.  My father said she was very religious & her second husband was a rough character. So I can't imagine that helped her health very much.

Her daughter - my elderly aunt, has heart problems and terrible peripheral neuropathy. All related? I think so.

A-ha Moment

The Dr Oz show about undiagnosed allergies opened my mind up to something. I didn't have Fibromyalgia and THEN get allergies. I had allergies to molds, weeds, and dairy protein casein for a long time, so long that the food allergen got through my blood/brain barrier & has caused neurological issues..ie Fibromyalgia.. Maybe it is time to get back to the allergist, not the rheumatologist.

Rib & back pain, chest discomfort

My ribs hurt like someone hugged me overly hard. Trigger point-like knots at the back of my neck. I try to massage them out. I'm hurting but if I take Tramadol I will probably have trouble sleeping...but pain can bother sleep too - so, what to do?

I haven't had any more heart palpitations since the last post about it. I'm back to taking my vitamin B-12 sublinguals. I have had terrible intolerance to cold. My hands and feet are always cold, and being cold is actually physically painful. It can be a sign of hypothyroidism & I will asked to be checked for that the next time I go....but, I think if you also have Fibromyalgia, then you know how the test results will come back - "Normal," right? And doctors DO rely on those tests, even though they claim they treat the patient, not tests.

So doing some research, I found that deficiency in B12 can also cause extreme intolerance to cold. I got back into taking my vitamins. It could be my imagination, but the last couple days have been better than usual. I'm keeping the supplements at the bedside so I can remember to take them.

Bronchitis

In the doctor's office, there were 4 Gideon's bibles. FOUR. I stacked them up. Is this doctor's track record that bad or what?!?
However, my doctor is an Indian in a little bible belt country town. Maybe the local folks is a'skeered that his gods are more powerful? Who knows.

I have bronchitis so now I have an inhaler and an antibiotic.  Hope to feel normal...whatever that is...soon! He also wants me to take Zyrtec for a month.

Flu

This flu is killing me. I woke up at 4:30 am with bad body aches, throat & ear pain. My arms hurt almost too much to type this. Maybe I should go to the doctor since I've met insurance deductible for 2013. It just takes so much time & energy & we also need to deal with the flat tire. Ugh!

I'm moving into day 3 of this. I can't tell which body aches are flu and which are from Fibromyalgia. My ears are also ringing so hard, I must be going into a flare if I'm not already in it.

Chemical sensitivity is common with Fibromyalgia

At Kohl's store, felt fine then sudden stomach ugh/nausea, headache. Need to go to the bathroom, diarrhea. Then my daughter pointed out that we were near a large candle/potpourri/insence/oils section. Got away from there fast.

Usually I don't have trouble in Kohls as I do with most stores. Even the fabric dyes and chemical fabric treatments can make me sick in some places.

There is nothing to do except try to avoid offending substances.

A video you MUST watch!

You will see the word "Fibromyalgia" in one of the slides/charts. Hmm. I think you've seen that word before...lol...but have you ever seen it as it relates to gluten?

Adjusting to CPAP

Sorry for all the separate posts. Sometimes I forget something, and the other reason is that I think it's better to have separate posts on diverse issues, so if someone is looking for information on muscle twitches related to Fibromyalgia or sleep issues in Fibromyalgia and so forth, they can find a post on it without having to ready multiple paragraphs in order to find what they are looking for. 

So, this post is about my CPAP machine and some tips that I hope will help you.

I am getting pretty used to it now, I think I've had it close to a year. At first, I would feel somewhat claustrophobic when I had it on. Then I had to learn how to deal with it when air would leak out from under the mask and hit my eyes. If you need one or are having trouble getting used to a CPAP, here is my advice. Just don't give up. The more you use it, the less you will even notice it. Trust me. Use it even for naps. Especially if you feel claustrophobic, using it for a 1 hour daytime nap will probably help you through that.

If the air is leaking toward your eyes, you may actually have the mask on too tight. Get yourself into your sleeping position, THEN adjust your straps. Don't adjust your straps while sitting up. It's not the same as the position you'll be sleeping in. Adjust it to your sleeping position. This has been a big help for me.

Over time, the hard part of the plastic mask will stretch or get a bit bent out of shape, even when you don't realize it. After awhile you will need a whole new mask. Of course the same goes for the silicone pad area.
Very important for it to not be too high on the bridge of your nose or to have it too tight. If you're a woman, making sure your face is clean of makeup will help the mask fit better too.

Lately, I've had a problem of my mouth drying out. And when I say dry, I mean...desert dry. Like my tongue feels like a starfish in a gift shop. THAT DRY. I cranked the humidifier option on my CPAP up to the highest position and I keep a bottle of water by my bed. It seems to be helping. A quick search online and I found information that a lot of people like some mints called ZyliMelts...they're little disks you can put in each cheek that gradually dissolve and keep your mouth moist. So that is an option if the dry mouth problem continues. 

Arm jerk woke me up

I was just getting to sleep when a sudden jerk of my left arm woke me up. I get twitches etc quite often but this was a major jerk of the arm...almost hit myself in the face! I am really trying not to take a muscle relaxant every night (I try to space out my medications, I don't like to take any drugs) -- but this shows how Fibromyalgia can really mess up sleep. Screw up someone's sleep for long enough and anybody would have pain.

Update on my hair pulling

I need to write about my Trichotillomania problem more on here. I have had it so long (I think about 38 years or so) that I think of it as just a part of me, a dumb thing that I do.  It still bothers me but I don't allow myself to beat myself up over it. Especially since I have come to terms that it is very likely a nervous system issue -- something that is hard for me to help. Just like I can't "just stop" having Fibromyalgia, I also cannot "just stop" Trichotillomania.

However, I have lately found something that is helping. It is an Android game -- it's called Super Monsters Ate My Condo. So silly, but I think the game is actually helping me not pull. If I read a book or watch TV, I tend to pull. This game is so active that there is no way I can possibly pull while playing it. If I am hurting, I can also play and it takes my mind off the pain, distracts me.  If you can't get this game, maybe you can find a similar game that will help. Mah Jong for example is a very calm game, but it is so calm I could pull my eyelashes or eyebrows while playing it...so that's not a good choice for me. Maybe if you are having a hair pulling problem you can try some different games and find one that suits you.  Probably sewing or needlework would also help.

Am I cured of Trichotillomania? Oh I'm sure I'm not. I've had times of remission before. But I also used to bite my fingernails and I am 90% "cured" from doing that now, I'm happy to say.

Feel like I'm made of lead

It took a lot of talking by my husband to get me out of bed. I was so sleepy and so heavy. Mainly heavy. My arms and legs felt like they were made of lead. Last night I took 1 Benadryl and a Tylenol (I had taken Tramadol earlier in the day).

 I just wanted something to help me sleep and cut any pain so I could sleep well.

I can't see either of those medications causing me to feel so limb-heavy.  I wonder if it's something to do with energy in the cells of my body. I know a lady who has Mitochondrial disease and that is really scary. I don't think I have that, but I wonder if this is something that goes with that problem. 

Knowing people with Mitochondrial disease, Lupus, and even Stage 4 Liver Cancer helps me keep perspective about my problems. I may feel like absolute shit, but it's not terminal and all I have to do is get through the day and the Lord grants me a new day. I am lucky.

More sleep to help Fibromyalgia

Since the kids have been on Christmas break, I have been getting more sleep. Sometimes 10 hours per night. I think that since my sleep quality isn't good, the quantity isn't making much difference. Maybe 10 hours of sleep for me is really equivalent to 5 hours. I still wake up stiff and I'm pain. At least last night I did dream, and that is a good sign, however my dreams were about pain. I was in pain so I incorporated it into my dream. I am determined to have a good life despite Fibromyalgia. I can't let it get me down.

2 Conclusions

I have come to 2 conclusions.

1)  I just can't tolerate anti-depressants. They don't work with me. I have too many bad side effects. I gave it a shot.

2) My intolerance for milk and dairy is getting worse. If I have a bowl of cereal with milk on it, I end up with a headache and diarrhea. If I eat a handful of Cheez-Its, I get a terrible burning, stabbing pain in my stomach. Good old IBS or just dairy/lactose intolerant or both I do not know.

This sucks because I really really love Cheez-Its.

That is all.

Hip, knee, leg pain

Today after eating Bush's Grillin' Beans with a few pieces of hot dog in it as well as some sweet iced tea to drink, I was hit by painful indigestion and gas. So bad that I couldn't even zip up my jeans or stand up straight for awhile. I had also taken a Tramadol before the indigestion hit, as I could feel my general achiness picking up and I wanted to head it off. I had been medication free until that time, about 4:30 p.m.

I went to my bed with pillows to raise up my chest. Then my legs started hurting. Oh they hurt SO bad today. My knees had a real surge in pain...they burned and felt swollen. I wouldn't even want to try to stand up. Then the pain reached a peak and quickly dropped off.

Then later this evening it surged again, but more in the hips...the bursitis feeling. Got so bad I was in tears. It still hurts but I am going to be okay.

What happened today: I got oil change for car and had them replace a turn signal bulb. Car battery went bad and I had to replace it at Auto-Zone. All together, I spent approx $150 today. I only expected to spend about $30-$40. We are short on money with a lot of major bill's looming. My stress level has been higher but I am just doing what I can. My daughter and I went to lunch and did a quick shop at CVS. I cooked the easy dinner. No reason for me to hurt so bad.

Hands asleep

Woke up with both hands very asleep past the wrists. Nearly impossible to deal with morning alarm when you can't feel it to turn it off!

This happens fairly often.

Morning stiffness and pain

Ah, yesterday I felt oddly great, almost normal. This morning I woke up with lots of back pain and really pain just about everywhere.

The new thing was my hands were very stiff, like my skin was too tight to stretch when I made a fist. That is a scary new symptom which could mean Scleroderma.

But one time doesn't mean I have it. Worth mentioning to my doctor
.
I also have a headache and some congestion, which could be due to only wearing the CPAP 2 hours. I apparently slept roughly because I took off the CPAP in my sleep and the foam pad on my bed was all bunched up, which added to my discomfort.

I didn't take any medications before bed because I was feeling so good then.

Shoulder and neck pain with Fibromyalgia

I have mostly had the hip pain the last 3 days. Now it's moved to my shoulders and neck. I should make a cut out paper figure of myself and chart my pain using little sticker dots. lol!

Bursitis hip pain with Fibromyalgia & the view from here

Hip pain has been hurting a lot the last couple days. Well duh! Pain hurts. What a silly thing I just wrote! lol!
Luckily, I can laugh at myself and the silly things that I do.

A couple days ago I pulled a back muscle & had to take a Flexeril. Since that improved, my hips got jealous for attention and now they hurt.

I am very down. Although I can still laugh about absurdity, I feel so very depressed. I feel like the only enjoyment I have is eating. I'm not motivated or energetic enough to go for a decent walk. I've only been taking the dog out into our yard.

I am really not happy being married anymore. I haven't been happy for at least 10 years. Actually longer...I've been pretty miserable for many years. I don't have any say or power in this relationship. I am not listened to. Sometimes I am treated nicely but mostly rudely.

I've come to realize that if we stay together, when we're old it will be just us & I won't see our kids or future grandkids because of his boundary issues (for one example, he doesnt want our daughter's boyfriend to come over anymore). No reason, other than his CSA issues...he doesn't want anyone else in the house. I am losing my patience.

Things are going to get rough, because I just can't keep my mouth shut and pretend everything's fine anymore. It's time to address the elephant in the room he's been ignoring.

The trouble is me not making money. I am in a dependent state.

I haven't been able to figure out how I can fix that.

When your hair hurts at the roots when you move it

My daughter braided a small section of my hair on the top of my head this morning. After removing the hair elastic, my hair hurt so badly. It felt like a really bad sunburn on my scalp, and like I was getting thousands if papercuts on my head.

I've had this happen before. I used to think my scalp was just dry, but now I'm confident it is part of Fibromyalgia.

Sudden Fibromyalgia flare

No doubt, Fibromyalgia is real.  I used to think only really pathetic, whiny people had Fibromyalgia. I felt sorry for them, but also felt that they probably brought most of it on themselves because of their mental state.
Well, I went to bed last night feeling fine. I watched Ken Burns' Dust Bowl documentary online on my phone in bed. I went to sleep wearing my CPAP. I was in A fine state of mind and felt pretty good.

When I woke up, I felt very groggy. First my stomach hurt, then every part of me hurt. I know this, because I actually tried to think of a part of my body that didn't hurt, so I could focus on that.

I hurt all over as if someone had beaten me during the night. I tried to find new positions that wouldn't hurt as badly. Every pressure point and joint was painful. Lying on my side, I couldn't even take the pressure of one knee resting on the other.

My whole body seemed under pressure. I felt myself starting to sob, which simultaneously pissed me off (I hate it when Fibro beats me down mentally) but at the same time, I find that after crying, my muscles will relax and I feel better.

My husband brought me Tramadol. I knew within about 30 minutes I would have some relief. That time is now. I'm not all better, but now I can function.

I brushed my teeth and even they hurt. I combed my hair gently and even that hurt. It's like my pain volume knob is turned to a ridiculously high level.

I did eat a couple things yesterday that my body could be reacting to. A Gwaltney hot dog and 2 Hostess Cupcakes. Yes, I know that was stupid.