First Days on Cymbalta

Cymbalta has been a little rough. Insomnia breaking through the Ambien, anxiety, lack of appetite, and a touch of nausea. The nausea has been better today. I decided to take the pill in the morning instead of at night, hoping that helps with the insomnia. So I will skip it tonight and take it tomorrow morning.

The anxiety yesterday morning, following the first Cymbalta dose, was insane. No letup from 6:00 AM to about 9:30 AM, off and on after that. It has been tons better today. It hits, but not as badly. Experiencing this anxiety was not enjoyable--I get nervous about things sometimes, but not anxiety like this. It reminded me of Nuvigil, but the anxiety with Cymbalta lasted longer.

My doctor called and emailed yesterday to encourage me to go to the ER. No thanks. I have been sick for weeks--why now? Only because I said that I want to kill myself. I do not see what they could do in the hospital that my doctor cannot do by calling my pharmacy.

I got diagnosed with a yeast infection today. Bad one. I am totally blaming this on the cipro I took a couple of weeks ago.

If I can get over the insomnia, Cymbalta might help. I really want to give it a good chance, because there are not many options left for my burning pain. Well... basically none. When I spoke with my nurse on Monday, she asked when my sleep study is. Oh, sleep study? I do not have one scheduled! Just a consultation! Three more weeks until that.

Last night I took Ambien CR, woke up three times, could not go back to sleep after 6:00 AM, took 10 mg of regular Ambien at 6:30, and got up two hours later. Two hours on 10 mg of Ambien. Most people get eight hours. Even I usually get three to four hours on that dosage. Cymbalta definitely affected my sleep both nights. Hopefully tonight will be better. My sleep problem is bad enough already!

Thrust In Your Sickle

When I have not blogged in a while, it usually means things are really good or really bad. Things are not good.

Let us discuss death. Just entertain the idea. It sounds so good. The problem is that there is no fool-proof method. Chances are good that I would end up hurt but not dead. I already know that situation sucks.

I contacted my doctor and nurse last Wednesday to let them know that I have suicidal ideations, as my shrink advised. On Friday, Alyssa emailed to say that she was sick with pneumonia and hoped Dr. Rick had contacted me, that she hoped to be well enough to return to work Monday. Basically I told her whatever. What if you felt that way every day and had to work anyway? Maybe it was not fair, but I am having trouble feeling sympathy for normal people who get sick. They are sick temporarily, and there is no way it is as painful as my everyday pain. Whatever, I have anger issues lately. I blame it on the grieving process. It has been a year, and I have felt denial, bargaining, depression, and sometimes even acceptance, but this is the first time I have felt anger.

Alyssa called later on Friday and left me a message that she had sent several messages to Dr. Rick, and that she understands that I am dealing with a lot. Dr. Rick called and said to increase my tramadol to 50 mg (it already is! he seemed to think 25 mg), and he offered Cymbalta. Basically he said have a good weekend.

Ugh, yes, he called right before he left for the day. And I missed his message by minutes. Figures! Today Alyssa followed up with me. She said how she is worried about me, that I am not doing well, that she and Dr. Rick discuss me. I wanted to say That is nice, but it does not change anything for me. Alyssa tried to figure out how serious I am about dying and if I have a plan. And she called in my Cymbalta prescription (which turned out to be unreasonably expensive, just like Ambien CR).

Alyssa said that if the pain is bad enough to die, I should go to an ER. They could admit me and get the pain and "mood" under control. What do I look like, a sucker? An ER is not going to help unless you have a bone sticking out somewhere. Besides, pain and psych admissions sound like a great way to ruin a career. Maybe I would consider it for pain--I had never thought of that before. Hospitals are for really sick people, not me. But I think maybe I am really sick. However, I would never go to an ER if I wanted to kill myself. Duh, suicidal people do not want help. Going to an ER saying that you want to kill yourself is probably attention-seeking behavior.

Ah, here is something different: for the last two days, my left ear sounds crackly when my eustachian tubes open. (Yes, I know when my eustachian tubes open.. because I am that nerdy.) But it does not hurt. I suppose that I have fluid in my middle ear, but it is not infected. I do not think it is affecting the rest of my health, because my pain has actually been better the last four days. It is down to 7-8 a lot of the time. Right, that is a reduction!

Seriously, the thought of tomorrow is too much sometimes.

By a Thread

Gosh, the days are hard. People talk to me at work, and it is overwhelming. I just want them to slow down.

Sometimes I get anxious when I am sick and someone asks me to do something extra. I feel like I am barely making it, and I will drown if I have to do more.

Walking is becoming harder; in the afternoons I cannot hide the struggle. I walk slowly and try to look like I am just not in a hurry, concentrate on making my left leg catch up, remember to smile.

I wish I did not need to work. It makes me sad that I only have one good day: Sunday. Working Monday-Friday, sick with Avonex on Saturdays. I guess I really have half a good day, because Sunday afternoons I work at church. Then I have to recover.

I do not understand why I have gotten so bad in a relatively short time. A year and a half ago I was fine.

Sensory-Friendly Clothing

With this horrible, burning pain, my clothing really hurts. I wonder if this is what kids with autism feel like when they complain that their clothing hurts. Many of them cannot stand seams or tags.

Seams are painful, and most textures are torturous. Any degree of pressure or binding is out. Thank goodness for my Life Is Good creamy shirts, which are extra soft. Pants are tough, because they all have seams. I do have one pair of dress pants with silk lining, so I have been wearing them, but they still create pressure lines. I bought new sweatpants, because I had nothing to wear around the house. One pair of thin pajamas do not hurt. And I had no jacket that did not hurt my shoulders, so I bought a new one--amazingly, I found a peacoat-cut sweatshirt. I never thought clothing could be this complicated!

So... I remembered that some kids I took care of many years ago had comfortable pajamas from a Scandinavian brand. After some googling, I found the name: hanna andersson. And they have women's pajamas with flatlock seams. Score!

Finding sensory-friendly clothing is hard and expensive. But with soft, comfortable clothing, my pain level is sometimes sub-suicidal. And so I close my eyes and hand over my credit card.

Grumpy

This pain makes me so grumpy! Pressure on my skin or bending my body (like bending my arm) makes it worse. It hurts to sit back. But I am tired, because I still have fatigue! I tried to lie back and use my computer (with a blanket to pad my lap... less pressure...), but the back of my arm was hurting more from leaning it on the couch. This afternoon I had a long meeting, nearly two hours, in a chair that sent my left foot over the edge. I was getting tired from the cognitive drain and the pain. Working with kids and families is better--distracting. In small doses, so I can collapse in the car!

I pray for relief from this pain, and I think it helps. Most of the day I was fine emotionally, but sometimes I got very angry.

I am so ready for this flare to be over.

Answer

I got my answer. While I was praying about being disappointed at not getting an answer during Conference!

On Fire and Out of Spoons

Today I have been in severe pain, and I have gotten angry a few times. In the last few days, I have been angry a few times with my nurse and doctor. It is irrational, but I am angry with them because they are not sick. They do not know how it feels, and I wish I had a doctor with MS.

I have been watching General Conference. I asked a question beforehand and hoped for an answer, but I did not get one. Or I did not recognize one. It is disappointing to have to wait for it or maybe never get it.

Oh man, this pain is so bad. Here are some ways I could describe it:
-A terrible sunburn--but aloe does not help
-A bad rug burn
-Boiling oil poured on my skin

Today it is on my feet, lower right leg, knees, thighs, hips, butt, lower back, lower stomach, right shoulder, arms, and hands. Touching makes it worse. Even clothing makes it worse.

I googled how people live with pain, but of course very few people have this kind of pain. A lot of people with MS have it, but that is a small portion of people in general. Most people complain of musculoskeletal pain, and I try to sympathize, but that kind of pain does not hold a candle to this. I know--I have had back pain since I was 12. Considering where I would place my burning pain on a scale of 0-10, I was debating whether this or kidney stone pain was worse. And I could not decide. But I did decide that I would rather have another kidney stone, because at least the pain would end.

Although I did not find an answer to my question, I stumbled on a great analogy for MS. It was written by a girl who has lupus. Some of her symptoms are different than mine, but it is similar enough that the analogy works great. Go here and read it. Twelve spoons are more than I have had in a long time, but you will get the idea.

And then read this.

Milestone

Today at work, I was leaving a room, walking through a little hallway with a coworker. As we entered the larger hallways, she asked, "Are you okay?" I was like, "What?" I really did not know what she was talking about. She said, "It looked like you were having trouble over there." I nonchalantly said, "Oh, sometimes I lose my balance."

That was it, she did not ask more or seem terribly concerned. I tried to project calmness.

Funny, now that I think about it, another coworker asked the same question after a meeting a few weeks ago. I got paranoid and asked why. Then we got interrupted. I wonder if she saw something or just knew that I had been sick a few years ago. My first MS flares, although I did not know what they were at the time. I do not get to talk with that coworker often.

Anyway, so I guess today was a milestone--someone noticing a physical problem and commenting on it.

Ahhh... ?

I slept 10 hours! Thank you, Ambien CR, I am sorry I ever said you are the same as regular Ambien. You are truly wonderful, giving me eight straight hours of sleep, after which I fell asleep again for two more.

But I still feel fatigued today! MS fatigue is so unpredictable. And I know it takes more than one good night to catch up on sleep. At least I do not feel super sick like I did yesterday.

Need. Sleep.

Today I felt the most sick I have felt in a while, probably since the last time I was on steroids. Well, the last time I had a full course of steroids--the one day in July does not really count.

Last night I slept an hour, woke up, another hours, etc. All night long! But on the positive side, I fell asleep in less than an hour, and I went back to sleep within 20 minutes each time. Part of the problem was that I was hot--still trying to figure out the temperature setting that will work now that I am downstairs. But part of it was just me, sleeping shallowly. At least I am out of the "take two hours to fall asleep, sleep two hours, and feel totally awake the rest of the night" habit. Hopefully things are moving in the right direction, as my nurse likes to say. But I am still exhausted, feel SICK, and want to cry. Maybe I should, because it often helps. Crying and eating sometimes help.

I do not sleep when I am on steroids, so maybe that is why I feel similarly to those times.

My morning was terrible, the afternoon was more bearable, but then I have gotten worse again since getting home from work. Thank goodness I had rides today. This morning I absolutely would have stayed home if I had not had a ride. But I enjoy going to work, absolutely adore my students, so I want to be there.

I have not heard anything from the sleep clinic! I will email Alyssa to see if Dr. Rick has filled out the referral paperwork. Or if he has even received it.

I guess I had better take Ambien again tonight. I can go without it tomorrow night. Ugh, except that tomorrow is my shot day, and I want to sleep through the side effects. There is never a good time to miss sleep!

Temperature Processing

For about two weeks, I have been taking an herb called Vitex, aka Chaste Berry, aka Vitex Agnus Castus. I am taking 400 mg three times daily.

It has really helped with my temperature sensation. I have only gotten hot once in the last week, which was yesterday, when I really overdid it. I walked about a store with my friend for two hours. I did sit down sometimes (yes, on the floor--that is how tired I was), but I was on my feet a lot. Hanging on the cart, ha.

So that was the only time I have been hot. And many times I have been COLD. This is so unusual for me this past year. I used to be cold most of the time, but since my MS hit hard, I have almost never been cold. I mean, we are talking outside in 30 degree weather in a tee shirt and not cold.

Vitex is supposed to cause the body to make more estrogen. I chose to use it after realizing that researchers have concluded that estrogen probably acts as a natural steroid, calming the inflammation of MS. I did not expect it to impact my temperature processing. That was an unexpected boon!

Less Burning and I Might Be Crazy

My burning pain is a lot better today. More like a 7 level, sometimes 8.

I am still taking Ambien CR. It took me an hour to fall asleep last night even after taking Ambien! Part of that was because I had a good 30-40 minutes of strange psychological symptoms. I felt like I was small and thin, folding up like a piece of paper or a crack in the wall. Everything felt big and thick, swollen. And too far then too close. Intense. And I had some vertigo--even with my eyes closed! It was hard to sleep, because I was scared of the way I was feeling. It was overwhelming. I am not sure if it was the Ambien, the antibiotics (which are known to cause psychological/psychotic issues), or what. But I remember having that problem as a child sometimes and the last time I took steroids. These people have had the same thing.

And... I have a yeast infection. Seriously, when it rains, it pours.

When It Rains

It is raining today, which I love. However, I do not like raining and pouring in the area of my health.

I have a UTI!

So now I am taking ciprofloxacin. When I added it to my medication list online yesterday, it came up with an interactions warning. Actually, it came up with several interaction warnings, but one concerned me: That class of medication can increase CNS activity. People with CNS disorders should probably avoid it.

Huh?

The website interaction checker said that medication can cause anxiety, hallucinations, restlessness, insomnia (!!!), seizures, paranoia.... I realize that it is a possibility and not a certainty, but I did get nervous when I saw insomnia and anxiety on list. I started to email my neurologist, but I took a step back mentally and thought it through. I searched for other people with MS using cipro, and there are many. And it is listed on the NMSS website as a common medication for UTIs, which occur frequently in people with MS. I decided that I could just stop taking the drug if I have a problem.

Speaking of insomnia, I still have it. But I think I am getting better? At least now I feel mentally tired in bed. I have been feeling physically tired but not mentally tired, just feeling awake. Now I am very tired all around. However, I took Ambien CR last night after trying on my own for an hour. It took 30 minutes to fall asleep with the medication, and I slept an hour, woke up, then went back to sleep for seven hours. Not bad. I was really tired getting up--definitely wanted to sleep more. Darn work.

Speaking of anxiety, I am tons better. I am accepting that I need to use sleeping medicine for now, and that I will keep giving myself chances to sleep on my own. And I will pursue the sleep study or appointment with sleep specialist. Yesterday I emailed back and forth with my nurse for a while, and she brought up the sleep study. I explained that I cannot make the appointment; I cannot even speak to anyone. There is only an answering machine for that clinic, and I already left a message with my info and my neurologists info. They should be faxing him. Alyssa did not think they had, and she said she would follow up. She is great.

I am also much less anxious because of my psychotherapy session on Saturday. It was very helpful.

In addition to the UTI, my right ear is bothering me again. It feels "off" and kind of sore. When I touch the skin or bone near my ear, it hurts. I am not pursuing treatment right now. I will give it some time. Maybe email my nurse.

In addition to the UTI and ear pain, my burning pain has been bad. Worse than ever, actually. And it has spread to new areas. It began to increase Saturday afternoon, and yesterday it was absolutely off the charts. I have had the burning pain previously on the fronts of my thighs, my hips, my buttocks, my back below my waist, my knees, my groin, and the bottom of my stomach. Yesterday I had it in those places PLUS my upper chest, arms (particularly the outside, ulnar nerve area), upper back mildly, and hands. It was so bad on my hands. The backs of my hands. This burning pain is back today, though blessedly a bit milder than yesterday. However, today it is on the tops of my feet, especially my right foot.

The burning pain is probably the worst MS symptom. Yesterday I was considering whether the burning pain or the fatigue is the worst. Tough call. But the burning pain gets to 9/10 pain, easily. It makes me want to die. Each minute is excruciating.

Yesterday I took my tramadol every four hours, and I took Vicodin in the evening. The Vicodin did not help. Tramadol helps for about two hours (bringing the pain down to an 8), but then it was right back up.

I wonder if I am more sick because I worked so hard Thursday, Friday, and Saturday. We were doing some work around the house, and although we had tons of help, I still pushed myself and did a lot. I absolutely wore myself out. I was shocked that I still could not sleep!

One good thing is that I have not had vertigo in a couple of days. I stopped taking amantadine on Saturday--maybe that was causing it. The reason I stopped that medication was because I wanted to make sure it was not causing my insomnia.