Everything Hurts: Parts II & III

Sunday, September 27th was day one of the "Everything Hurts" pain. Literally, as you can see by the post below, everything did hurt. Well, Monday and Tuesday were rounds two and three of that same pain. 

On Monday, the pain was identical to that of Sunday. I guess I expected it to hang around for a day, maybe. But no, it decided to stay longer. Monday was full of all of the same bizarre patches of sensitivity all over my body that hurt to touch even lightly. I described below a few of the startling limitations this pain caused. Well, after I wrote and posted that, I got dressed and went out to a movie with my family. I chose a pair of dark jeans that have a bit of stretch to them, thinking they would be more comfortable than other more confining choices. I was wrong. My lower abdomen, that space just below the belly button, hurt so much that the button on my jeans created extremely painful pressure. 20 minutes into the movie, I had to unbutton my jeans to get some relief. I also took an instant release morphine, 2 Aleve, cyclobenzaprine and Lyrica to try to manage the pain while I was out. Even still, I had to get up and rub Biofreeze over my SI and hip joints so I could make it through the movie. I literally did everything I could do to manage the pain that day. Well, Monday was exactly the same except I didn't go anywhere or do anything. I stayed in bed all day, taking a very long nap in the afternoon and just resting with my eyes closed for the rest of the evening. I was vaguely aware of a few calls and messages I received that evening, but kept drifting in and out of what felt like a light coma. 

By yesterday, Tuesday, September 29, the inflammation and pain seemed to have gone down a bit. My skin still hurt to touch all over, especially in those areas like my lower abdomen, left side, SI joints, rib cage, chest, thighs, etc. By then I had also noticed how very badly my shoulders hurt, so much so that I could not wear my purse on my shoulder because the pressure was simply too much. So, I carried it in my hand instead. But yesterday, while the sensitivity of my skin had decreased a bit-as evidenced by the fact that I could fold my arms and let them rest against my body again-this deep muscle pain in my neck, shoulders, and upper back became incredibly intense. It felt like I slept in a strange position so that moving my head from side to side hurt pretty badly. And when I went to lie to down to nap at 2pm and then again at 6pm, getting into a comfortable position was nearly impossible. Add to the fact that my entire body felt badly bruised, my muscles ached as I attempted to settle into any position in bed. It was awful. Every time I lifted myself out of bed or lowered myself down into it, I actually cringed and said ouch out loud. It was bad.

Again, I spent the entire day napping and resting in bed. The only differences between yesterday and Monday was that yesterday I had to leave the house for an appointment with my psychologist and I had to take a pain pill to get enough relief to go to sleep. Actually, the latter set yesterday apart from most days. I very rarely need an instant release pain pill to manage pain at home or in bed. Usually just resting or using ice packs is enough. But last night I just couldn't stand it anymore. The pain in my neck, shoulders and back was so intense that I knew I wouldn't be able to sleep. It almost felt like my bones were settling or rubbing against each other when I got into bed. Just like the pain that made my whole body hurt to touch, I was confused by the source and intensity of this deep muscle pain. 

Everything Hurts

I went out last night for the first time in a very long time. I also wore very high heels for the first time in 2009. It was all for my friend's bachelorette party and it was all worth the pain I'm in today. I fully expected to be paying for wearing heels all night. By the end of the night, I was in excruciating pain. I couldn't bear to take one more step in those shoes, beautiful as they were. My SI joints and lower back muscles were aching but the worst of the pain was in my feet. Again, this was all expected. 

A quick side note here. I just want to say how wonderful it felt to get all dressed up and go out. It's been a long time since I've been willing or able to do that. I put on these beautiful purple satin, 1940s style heels and my Marilyn Monroe red lipstick. I felt like myself again. I used to get dressed up almost every day. But a lot of that had to go when I started getting more and more sick. Anyway, it was nice to know I can still feel like that.

When I woke up this morning (and by morning, I mean 1:15 pm), I was about 10 minutes away from my pills. I needed to eat a quick breakfast before I could take my morphine and Lyrica. I knew those first few steps after I got out of bed were going to be rough. I was right, they were. However, that was not the worst of the pain. I was very surprised to find that my whole entire body hurts to touch. There are parts that are more sensitive than others like my thighs, rib cage, left side of my lower back and the skin over my SI joints. The pain is so intense that I cannot touch any part of my body even lightly. I cannot put my hands on my hips or gesture with my hands and let them fall to my lap. I cannot tie the belt on my robe because the slightest pressure is too painful. I cannot fold my arms and let them rest again my body. I have to carefully get into bed because the pressure of the pillows against my skin is too much. I have had days like this before, but not quite to this degree. I didn't do anything to provoke it that I know of. I didn't drink last night or eat anything unusual. I did push myself physically but not in a way that would cause this. I am assuming this is a Herx reaction from my new antibiotic Cedax. I just started it less than a week ago but have not had a typical Herx reaction. I have actually felt ok, with the exception of increased joint pain and a relentless headache. I can only assume that this is the result of inflammation from a Herx reaction. It is quite intense. The inflammation and sensitivity to touch started a day or so ago. I noticed last night at dinner that I couldn't gesture with my hands and let them fall to my lap without pain. During the worst months of this illness and leading up to my gallbladder surgery, I remember this kind of inflammation. It always affects my legs this way. My thighs are sensitive to touch, not the back of my legs but my lap. It's weird. Today, however, the pain is everywhere and far more intense. I'm going to take some Aleve and see if it helps. But, wow, this is bad!

IV Rocephin Therapy

This week I started IV therapy with Rocephin. I have gone through this treatment before, on and off for a few months, about a year ago. I have not tried it since my gallbladder surgery in August of 2008. I was told from the beginning that Rocephin can cause or exacerbate gallbladder problems and that many people eventually have to have their gallbladders removed as a result. I was one of those people. I do think that Rocephin was a big part in speeding up that process but I had had problems with my gallbladder for years before I took it. Another fact that complicates matters is that I also took the birth control pill Yaz for a few years before the surgery. There is evidence now that Yaz can cause heart attacks, strokes, deep vein thrombosis, pulmonary embolism, gallbladder disease or even death. Click on the following link for more information.

http://www.usrecallnews.com/2009/09/fda-sends-warning-letter-to-makers-of-yaz-yasmin.html

If you took Yaz and experienced any health problems, please file a report with the FDA by following the link below. There are many law firms around the country that are preparing and filing lawsuits on behalf of the people who may have been harmed by taking Yaz and a few other newer hormonal contraceptives. I do not yet feel comfortable participating in any lawsuits. But I do think it is important to file a report with the FDA. At the very least, I am a part of the process of discovering the extent to which this drug may have caused harm.

https://www.accessdata.fda.gov/scripts/medwatch/medwatch-online.htm

Back to Rocephin. There are many, many different Lyme protocols out there. One of the most trusted and widely used is the Burrascano protocol (http://www.ilads.org/files/burrascano_0905.pdf). Each protocol dictates different maximum dosages of each Lyme drug. Here is an excerpt from the Burrascano protocol for the use of Rocephin (Ceftriaxone):

"Treatment with ceftriaxone is dosed at 4 grams daily- given either as 2 grams IV twice daily, or 4 grams 

slowly once a day, four days in a row each week, usually for 14 or more weeks. Such a regimen is not only 

more effective in the Chronic Lyme patient, but regular interruptions in treatment lessen the potential 

complications of intensive antibiotic therapy with ceftriaxone, such as biliary sludging and colitis. Hence a 

more effective, safer regimen that by virtue of the treatment breaks, is less costly and affords the patient a 

more acceptable lifestyle. IV access with a heparin lock becomes possible (and preferred)."

As much as I would love to participate in treatment following these guidelines, I simply do not have the means to at this time. This is a rather aggressive protocol by most standards and not one that my current doctor is willing to order. I will be seeing a few more specialists soon, starting with Dr. David Reifsnyder in Lakeland, Florida, and hopefully one of them will be able to carry out aggressive treatment with IV antibiotics. 

Last week I did restart treatment with IV Rocephin (ceftriaxone). Last time I took this drug, I had very strong Herx reactions. I was usually ok the day the IV was administered but by the next day I would experience an exacerbation of tachycardia, joint pain, muscle pain, fatigue, lightheadedness (from lowered blood pressure), fever and headache. Even though I was started at a considerably lower dose than is called for in the excerpt above, only 1 gram a day for 2 days a week, I had strong Herx reactions. My doctor considers this the maximum dose and will not go any higher. In fact, in order to reduce the severity of the Herx reactions I was having, he reduced the dose to 1/2 a gram at a time 2 times per week. While the reactions were not as strong at that dose, they were still hard to tolerate. At the time I was working and trying to participate in a full social and personal life. Now, however, I am not working or going to school or socializing as much so it is not as important to keep me functioning. I believe that now is the time for a much more aggressive approach because I am willing and able to tolerate stronger Herx reactions. However, my current doctor still uses caution when prescribing IV Rocephin. At my follow up appointment 2 weeks ago, he ordered IV Rocephin as follows:

• 1/2 g once per week for 2 weeks
  
• 1/2 g twice per week for 2 weeks
  
• 1 g twice per week for 2-4 weeks
  

As you can see, he is taking a gentle and gradual approach. He is also combing some naturopathic elements with the medications. He started me on Saventaro, an herbal supplement widely used to treat Lyme for its non-pharmaceutical antibiotic qualities and anti-inflammatory properties. Saventaro is a brand name for the supplement Cat's Claw and is discussed in the book The Top 10 Lyme Disease Treatments (You can read information about and purchase the book at http://www.lymebook.com/top10book). I am also taking the supplement Nattokinase, a supplement considered a breakthrough in Lyme treatment because it is an enzyme that dissolves the biofilms that protect the bacteria in the cyst form. The research for Nattokinase is still pretty new and information can be hard to find. I like this article I found on another Lyme blog that discusses the topic:

http://www.lymediseaseresource.com/wordpress/new-hope-for-most-chronic-cases-of-lyme-disease-part-one/

Until I can see the new specialist and figure out my next move, I am happy to following the protocol I discussed in the above paragraph. Although my current doctor, Kirti Kalidas, believes in a gentle and integrative approach, he agrees that it is time to participate in a more aggressive protocol. My latest labs and some new and amplified neurological symptoms seem to be leaving us no choice in the matter. That is really fine by me. The whole point of taking 6 months off work was to rest and be aggressive. In order to do that, Dr. Kalidas is encouraging me to get a second (or third, remember Dr. Robbins?!) opinion and find a doctor who will administer higher doses of antibiotics. In the meantime, I am following the protocol below:

1.) 1g IV Rocephin twice per week-I chose to start at this dose rather than the more gradual approach he intended for me. I just didn't see the point in going slow anymore.

2.) 1 Saventaro in the morning

3.) Nattokinase 1 in the morning and 1 at bedtime-Take on an empty stomach and increase to 2 in the morning and 2 at night after 1 week.

The first dose of Rocephin-1 gram on Wednesday, September 16th-hit me pretty hard by the next day. I spent all of Thursday in bed too exhausted, weak, and lightheaded to get up. I remarked that even with all that, the Herx reaction seemed far less severe than last time I took Rocephin. When I say I could not get up, I mean that I literally could not get or stay out of bed. The lightheadedness was so intense that it made it nearly impossible. I wish I had a way to check my blood pressure at home because I think a reading on Thursday would have shown that it was very, very low. The day before, in the IV suite just before I got Rocephin, my blood pressure was 99/60. That is low but not dangerously so. I have been taking Beta-Blockers for a few years now to control tachycardia and they lowered my already low blood pressure significantly. I also recently started Paxil, an SSRI antidepressant and I wonder if it is responsible for my latest, all time low reading, of 96/56! Now, that is low even for me! I replaced Wellbutrin with Paxil and have been feeling significantly less anxious and depressed. So I spent all day Thursday in bed unable to get up. Later that night I had a fever that started at 99.3 and went all the way up to 100.1. Now, fevers are very common in Lyme disease and are very often a part of initiating or increasing treatment. I always get a fever during a Herx reaction, but not usually quite that high. I did notice that 2 big things were missing from this Herx reaction, the pain and tachycardia! In fact, tachycardia is usually one of the biggest components of a Herx reaction for me. I usually have to check my heart rate several times a day and wonder if it will get so high that I will have to go to urgent care again. This time, however, my heart rate stayed in the 70s and 80s. That came as quite a shock. By Friday morning, I had some of my energy back and drove myself across town for another gram of Rocephin. This time, the Herx reaction started later the same day with exhaustion, fever, weakness and a bad headache. The pain I did not report on Thursday, I discovered, was a reflection on the fact that I stayed in bed al day. I did not get up even to shower, only for the occasional glass of water. If I had, I would have found out that after only a few minutes on my feet, the pain in my SI joints and the surrounding tissues was so intense that I needed my ice packs immediately. Because I knew how rough Thursday was and Friday was not going too well either, I was sure I would need to prepare for Saturday to be rough. So far, however, it's not been bad at all! I was ready for such lightheadedness that I would be unable to get up and for overwhelming fatigue and pain. Actually, all that is really happening is I have a slight fever and headache. Since last night, my fever has hung around at 99.3 but hasn't spiked. In fact, I feel well enough to sit here and type for over an hour. I even got up and played guitar and sang for a while. That is something that I can only do on days when I've got the energy and inspiration to play. It is always a good sign when I play guitar and sing. All in all, today has not been half as bad as I expected. I slept alright and got up at 9:15 in the actual morning! As someone who has been fighting the urge to stay up all night and sleep all day for years and years, going to sleep with half as much xanax by 10:30pm and waking up in the 9 o'clock hour is a big deal. I was expecting to have to pack a lunch box to keep near my bed in case I couldn't get up. But that won't be necessary. I even feel well enough to get up and take a nice long shower. Fevers always make me feel a little icky so I'm looking forward to that shower. I really am surprised that today is an ok day. I was bracing myself for a rather strong Herx reaction. 

But no matter how strong a Herx reaction may be for me these days, it is still amazing that I can rest whenever I need to. I have access to everything I need, food, water, ice packs, my bed, all the time. Blood sugar, fatigue, and pain are all manageable from home. And, I don't have to wonder whether or not the brain fog, difficulty concentrating and reading, or the haze caused by pain pills is going to interfere with work projects or dealing with customers. None of that matters. I just get to be. It is pretty amazing and I feel very, very grateful for it.

On Hope

I have a particular perspective on hope that may not go over well with everyone. I use it sparingly to avoid disappointment. I simply cannot get my hopes up and have them dashed. Time after time, I've set my sights on some kind of progress and have had the rug pulled out from under me. It's not realistic anymore. That's why I say I have expectations, not hope. I try to be logical about it because it hurts too much to be let down. But, I've been at this for a while and have seen my share of disappointment. I didn't start out this way. At first, I was very hopeful and just excited to finally have a diagnosis. Now I feel like I have to be realistic. It took time to get here. It's not for everyone, I know. But, now I can be completely compliant with very, very complicated treatment protocols without being hopeful. That isn't something everyone can do. Compliance with treatment is key and some people simply cannot do it without hope. I respect other people's perspectives and needs when it comes to illness. Some people do very well with hope. I do not.

Lyrica, Nerve Pain & Side Effects

A little over a week ago, I cut back on my dose of Lyrica. Shortly before that, my pain specialist increased it from 100mg to 150mg per day in the form of 75mg capsules twice per day. The increase was to address a recent increase in nerve pain in my legs and lower back. It definitely helped. Although, I'm still not quite sure why it got worse recently in the first place. When I talked to my pain specialist, I asked if there was anything else I could do to manage nerve pain. Ice and heat both just seemed wrong. The only things I knew to do were to try to shift positions to reduce pressure on the affected area. Even that didn't really help much. She said no, that there wasn't much I could do expect to try more Lyrica. I was fine with that because at least I knew what to do or, rather, I didn't have to wonder anymore if there was more I could be doing to help. As it always does for me, the Lyrica worked fast. It made a huge difference in the nerve pain. 

Unfortunately, Lyrica comes with a certain amount of problems. First of all, it can be expensive. It started out between $50-60 per month with my insurance and that was with the discount for mail ordering it. Which, by the way, you absolutely must look into if your insurance offers it. I have a pretty good PPO with United Healthcare. They use a mail order pharmacy called Medco. They require you to use Medco for prescriptions you will take regularly and limit the number of times you can pick up those prescriptions at your local pharmacy. This rule, however, does not apply to controlled substances or any medications that you cannot refill for whatever reason. The wonderful thing about mail ordering your prescriptions is that they come in 90 day supplies but you only pay 2 co-pays instead of 3. It saves you one full co-pay every 90 days. That can mean the difference of hundreds of dollars per year for some medications. Anyway, the price of Lyrica has come down significantly for me over the last 6 months. But, when I increased the dose, the price increased too. Another problem is its many, many side effects. The biggest side effect is drowsiness. And it is not messing around. I get seriously, disastrously tired when I take it. When I was working full-time, I could only take it at bed time because I simply couldn't function through the fatigue if I took it during the day. When I stopped working, I immediately began spacing out my doses and taking it during the day. I think it made a difference in the amount of relief I experienced because a certain amount of it is release shortly after you take it. It is meant to provide continuous relief but I believe its bioavailability is such that a small amount is released shortly after you take it for immediate relief. Since I wasn't working, fatigue or drowsiness wasn't an issue and I was able to maximize the benefits of Lyrica. Another thing to consider is the benefit of keeping a drug like that at a constant level in your bloodstream by taking it at the same times every day. That is another way to really get the most it has to offer. 

Of course drowsiness is not the only major side effect of taking Lyrica. Other side effects that I experienced included weight gain, dizziness, trouble concentrating (though it's hard to blame Lyrica for that one since just about everything cause it) and dry mouth. Then, there is the risk of disrupting neurological processes. This isn't listed anywhere in the drug information but I think it's a fairly obvious one. Lyrica works on your brain and how it perceives pain. It deals directly with pain signals that go back and forth between your brain and nerves. So, it makes to me to think that it could possibly affect the brain in other ways too. It could be muddying the neurological waters and I can't really afford to do that. In my case, I've noticed a huge increase in what I believe are neurological problems like twitches, visual disturbances and cognitive impairment (again, who the hell could sort that one out from all the other possible causes). The twitching has gotten much, much worse in recent months. I do not yet know if it is truly neurological, why it has gotten worse or how it relates to Lyme. I do know that neurological impairments of all sorts come with the territory in Late Stage Lyme. However, I'm not certain that the twitching is included in that or if the fact that it's gotten much worse is an indication of something more. It is far worse at night. It happens throughout my entire body. It is constant and varies in severity. It cause everything from my legs, feet, arms and hands to my head and neck to twitch. Sometimes the twitch or spasm is mild. Sometimes, however, it causes an entire limb to move suddenly. When it is the worst is when it jumps around causing one part of my body to twitch then another and then another, in rapid succession for hours. I'm growing more and more concerned about it by the day. I really want to understand it and make sure that it is not an indication of something more serious. So, I was wondering if Lyrica could be connected somehow to the presence of new or worsening neurological problems. That was one reason that I thought cutting back might be a good idea. Plus, there's something a little unsettling about it, always has been. It's too new and no one knows what the long term effects could be.

Even still, the biggest reason I decided to cut back was to test a theory I had about urinary hesitancy. Until very recently, I've only ever had to deal with urinary hesitancy on a few occasions, both a result of medications. The first time was when I took Oxycontin for a few months last year. It was the first extended-release pain medicine I ever took. It caused noticeable urinary hesitancy but it was not nearly enough of a problem to stop taking it. Then there was the time I had my gallbladder taken out and suffered from a problem called "neurogenic bladder". Basically, the anaesthesia during surgery can cause a disconnect in communication between the brain and bladder. You feel the urge to go and can feel when your bladder is full but you are unable to actually empty your bladder. It is temporary and most common in men. That is why men are usually catheterized during major surgery and women are not. As with everything else, I was the exception. Lucky me. My bladder just shut down. Nearly 72 hours after my surgery, my bladder had still not kicked into gear and it was full that I looked like I was several months pregnant. It was at capacity and the pressure was intense. I called my surgeon who didn't listen to me and dismissed it as an infection. He called in antibiotics, which I never picked up, for a bladder infection I never had. I know that because I finally went to a local urgent care facility where they tested me for it and the result was negative. To my horror, they had to use a catheter and empty my bladder. I had to take a Xanax because I was freaking out. It is still, by far, one of the most humiliating experiences of my life. By the time I got there, my legs were swollen and I weighed nearly 8 pounds more than usual. They ended up drained nearly 2 liters from my bladder and told me that it could have ruptured. I was horrified but so relieved. I couldn't believe it. Think about it, 2 liters, as in a 2 liter of coke. Picture that in your bladder. Not fun. Worse than that, they told me that if it didn't start working on its own within 2 days, I would have to come back in and get setup for a catheter to be sent home with me. I wasn't having any of that! They gave me a few suggestions for how to kick start it and I took all of them. They said to exercise, avoid any medications with sedative effects-pain pills, muscle relaxers, lyrica, xanax-and drink plenty of fluids and monitor the situation. So, for 2 days I couldn't take much medicine for the pain which was a nightmare. I spent those days pacing around the house in an attempt to exercise. I hadn't exercised in years and it was miserable. It made the joint pain unbearable. But, it worked and my bladder finally came back to life. So, when I started having problems with urinary hesitancy a few weeks ago, I didn't waste anytime figuring it out. Lyrica was the only medication I had changed around that time. I wondered if the increase caused too much of a neurological disruption and somehow interfered with my bladder the way that anaesthesia did after my surgery. Shortly after I cut back, the problem went away. Now, I have no scientific evidence to support this, but I really do think it was causing the problem. Also, I lost a couple pounds right away when I cut back. Nice! 

My plan for cutting back was to see if doing so would relieve some of the side effects but still be enough to keep the nerve pain manageable. I decided to cut out my bed time dose and take only one 75mg capsule in the morning. I wondered if it was necessary to take it at night and if it might be a waste while I sleep. So far, things have been just fine. The nerve pain is reasonable most of the time and some of side effects have gone away. I'm going to stick with it and see if I can handle the lower dose. I figure that it's always worth trying to get by on less medicine. And again, it just makes me uneasy to take such a new medication. I'll be glad when I get to stop it for good. 

Now, don't get me wrong, Lyrica is a miracle drug. It works immediately and completely for me, like actual magic. You can read my testimony in the "How the Pain Started" posting next time you've got several hours to kill and a box of tissues. It's incredible stuff. As you'll see if you read that post, it pretty much saved my life once.

Heat Intolerance

After doing some research, I am pretty convinced that I suffer from ever-worsening heat intolerance. Heat intolerance is pretty common in chronic illnesses like Late Stage Lyme, Graves' Disease and, especially, MS. For as long as I can remember, heat has been a problem. It used to be that being in the heat was simply uncomfortable and embarrassing. I've always been pretty fair and knew better than to spend much time in the sun. I've also lived in Florida my entire life, an unfortunate situation I hope to correct as soon as possible, so staying cool and out of the sun has never been easy. 

For the longest time my biggest frustration with the heat was how much it made me sweat. I always seemed to respond more quickly and dramatically to the heat than everyone else. It takes only seconds outside or in a hot car to leave me drenched with sweat. It's frustrating and embarrassing because it's always hot and I'm always the one with the problem. It makes it impossible to feel clean. And since it is hot 99% of the time in Florida, I never seem to get a break. I've really never met a single person who suffers from this sensitivity to the degree that I do. Years went by before I learned that it was connected to a larger problem. But even after my diagnosis with Late Stage Lyme Disease, I still never met anyone else who had such a problem with the heat. Sure, I knew people who disliked or were made uncomfortable by it, but never as badly as me. No one I know has to go to the lengths I do to manage the heat. I wear undershirts and a good antiperspirant daily. I cool my car down before I get into it. When I drive, I blast the AC then gradually raise the temperature as I get close to my destination to avoid the shock of the change in the temperature when I get out. Even these few measures seemed a little excessive at the time.

But that was all before. Things were manageable, kind of, before narcotic pain medications and the progression of the disease. A common side effect of narcotics, along with some other drugs, is increased perspiration. Perfect. The progression of this illness has brought me tons of new symptoms and caused an exacerbation of every single old one as well. Shortly after my diagnosis of Lyme, I had a doctor who instructed me to avoid ALL sources of heat including the sun, hot cars, saunas, hot baths or showers, heating pads and even hot drinks. It was my understanding that the heat can make the infection worse. Plus, I learned early on that heat was not the way to handle my joint pain. The few times I tried it, it made it much, much worse. Ice has always provided instant relief for my particular brand of joint pain. But, maybe she just meant that heat intolerance is common in Lyme and not worth the frustration. Maybe she was referring to what she knew was my rather severe heat intolerance. But now the heat intolerance has become almost unmanageable. First of all, there are lots of new things I have to do to to try to get back to the level of discomfort I used to enjoy. The new procedure has involved getting an even better antiperspirant, never getting into a car before it's cooled down, getting tinted windows, bringing ice packs with me in the car even when I'm not in terrible pain, avoiding wearing light colors because even undershirts aren't enough sometimes, wearing light-weight cotton skirts even at home where it is never cool enough, putting up blackout curtains in my bedroom, putting a small fan in the bathroom so I can attempt to put my makeup on, carrying a paper fan everywhere I go to fan myself when I get desperate, asking everyone I know to turn their AC down and, finally, taking Xanax sometimes solely for its ability to reduce sweating (seriously, it's pretty cool, check it out:  http://www.medicinenet.com/alprazolam/article.htm). It's fucking exhausting keeping up with all of it. Even with all of that, I still can't always manage to stay cool. It's actually gotten so bad in recent months that I avoid all plans, appointments and errands in the afternoons. I also can't take showers in the afternoons because I know I will never be able to cool back down. I try to do as much as possible in the evenings. 

About a month ago, a new type of episode started suddenly. To avoid confusion and simply because I like the way it sounds, I will call them 'spells'. The first spell happened after a late afternoon/early evening dinner during which we were seated outside. It was an extremely hot day and I was outside for nearly 2 hours. I knew it was going to be a problem so I took a xanax, used my paper fan and drank ice cold water the whole time. Then, out of nowhere, I felt like I was going to pass out. I don't mean I felt tired, I literally was going to faint. I had this overwhelming, desperate need to lie down. I also felt extremely weak, heavy, tired, thirsty, nauseous, and panicky. The panic turned into a full blown panic attack with hyperventilation, despite the xanax that I originally took to keep the sweating to a minimum. The weakness was the most startling and severe symptom. I had to be driven home. I laid down in the passenger seat of my car and got directly into bed when I got home. Actually, I had to be helped out of the car and into bed because I felt so weak. Well, really, I had to be held up and steadied just to walk into the house like a frail old woman. I could kind of make sense of everything, except for the nausea and panic. I assumed that I had overdone it and that I just needed to rest. I knew the perils of wearing myself out during treatment. To make matters worse, I spent the whole first part of the day baking the cupcakes I brought as a gift to the dinner. I knew it was a bad idea but I couldn't have known it was going to cause such a breakdown. 

Then, a few weeks later, it happened again after a short errand in the afternoon. Again, it was a very hot day, but I thought I had done everything necessary to pace myself and stay cool. So, I didn't see a problem with running a few errands in a row. By the time I got the second store, I felt a spell coming on. It started as agitation, fatigue and lightheadedness, all of which are so common that I didn't even know something was wrong right away. I sat inside in the air conditioning to rest but it was too late. It quickly turned into a full blown episode- just like the first one-with weakness, nausea, exhaustion, heaviness, panic and extreme thirst. I took a xanax for the panic but it was too late.  I still had to ride out the worst of the panic attack in the stall of the women's restroom, sobbing, shaking, and hyperventilating. After about 20 minutes, and a lot of cold water, I felt better and was actually able to do a little shopping. It wasn't as bad as the first spell but it wasn't good either. Since then I have many similar but less severe spells. But still, I couldn't make sense of some of it. I couldn't understand why I felt so nauseous; it didn't seem related to the rest of it. I also didn't know exactly what the common thread was so I didn't know when it was going to happen or how to stop it. I thought it was just exhaustion or a result of treatment wiping me out. I had been more aggressive with antibiotics, getting up to 400mg of Doxycycline and 250mg of Flagyl everyday. These were the highest doses I'd taken and they were hitting me pretty hard.

It was not until I happened upon some articles on heat intolerance that I finally figured out what was happening. I thought about each of the "spells" and realized that the common thread was heat. I read that many people suffering from later stages of Lyme Disease have a very difficult time with heat. In MS, heat can exacerbate a patient's symptoms and leave them exhausted, weak, and incapacitated. Heat can speed up the metabolism, along with everything else, and raise the body's core temperature too much. Many patients find that once they cool back down the symptoms get better or go away entirely. There is even a product called a cool vest designed to keep your core body temperature down so you can go about your day even when it's hot.

Check out these designed specifically for people with MS:

http://www.coolvest.com/RPCM_Cooling_Vest/Therapy.aspx

So, I started to think about my experiences. I remembered how hot it was at dinner that day, how running just one errand in the afternoon could knock me out. Then I thought about showering in the afternoon and how it was always so hard to cool back down. I also remembered how sometimes I felt like I was going to pass out at work, always in the afternoons. Finally, I started putting everything together, remembering how quickly and easily just a little exposure to heat has been knocking me out lately. It has become pretty debilitating. I have all but given up on functioning in the afternoons. But now that I understand it better, so I can at least anticipate problems and try to adapt to it. Finally, the nausea and panic make a little more sense. The higher doses of antibiotics were causing constant nausea so I think the heat just kicked that into overdrive. The panic attacks make sense too since heat can cause an increase in metabolic rate. So, I am going to test this theory and probably make some more changes. From what I can tell so far, I can recover from a little bit of heat exposure if I am careful to cool myself down quickly. For example, I took a shower in the afternoon yesterday but I made sure to pull the AC down, leave the door open and immediately lie down in front of a fan for a while after. Once I cooled back down, I was able to get up and enjoy relative comfort. I think some of the spells were simply too enormous to bounce back from that quickly. These left me wiped out of the rest of the day. But, I think if I'm really careful, I'll be able to avoid them or at least keep them from getting that bad. At the very least, I better understand what's happening. It's so much worse not to know what's going on or how to anticipate problems. The part I don't understand all that well is why it's been so much worse lately. I'm going to check with my doctor and see if he has any ideas. In the meantime, I'm going to do some more research and try to come up with ways to get through this god forsaken summer in Florida. I have already had to come up with so many little tricks to make leaving the house manageable. The thought of adding anymore is daunting. Oh well, here we go.

I'm really, really tired today. I'm just wiped out all the time lately. I sleep so much and am still so tired. I feel woozy all the time now. Leaving the house feels weird, just really weird. It's like that disconnected feeling you get after you take cold medicine. Running a quick errand leaves me breathless and heavy and exhausted. I feel like I'm seeing and moving through water, like I'm sleep walking. Even getting up to go into the kitchen last night felt bizarre. My face looked tired, like when you have a cold, and my voice sounded like I had just woken up all day. Lights seemed too bright, I was really jumpy, I had constant muscle spasms and twitches and everything was too loud. It was especially bad late last night. After 4 or 5 hours of not moving at all, I felt like I was inhabiting another body. When I dragged myself out of bed to use the bathroom and get some water, I felt like I was moving through water. I had been unwilling to move for so long, even to pee, that my bladder was so full it hurt. Moving and not moving felt weird. I wish I didn't have to be awake at times like this. I just want to be knocked out for 6 months and wake up when it's over. But, that's assuming that it will ever actually be over. Lately, I've been wondering about that a lot.  What if this 6 months doesn't help? What if I actually have MS and not lyme? What if? I worked so hard to accept this illness and move on with my life, but then this 6 month break happened so I put all that on hold. One of my antibiotics makes me cry and feel overly emotional and the other causes panic attacks and constant anxiety. The combination is really messing me up. I stopped them a few days ago. I'm going to take a break. I can't stand feeling upset all the time over nothing. But, drugs or no drugs, sometimes I get little flashes of the full weight of what I'm going through and I nearly collapse. I guess most of the time I deal with it in little pieces. There's a huge amount that I'm used to and then moments of severity throughout the day. So, I have general pain and fatigue today with episodes of severe, overwhelming exhaustion or feeling like I might pass out then flare ups of SI joint pain then maybe a little extra muscle pain in my neck. Then, an hour later there's blood sugar to deal with then maybe I have a stomach ache. I can deal with it, kind of, in little pieces like that. But every once in a while, and lately way more often than that, I think about it all at once and it makes my stomach drop and gives me chills. It's too much. All of it. The panic is obviously making it worse than it really is and there are pills for that. But there aren't pills for the fact that the weight of all of this is crushing sometimes. How the hell is this real? What am I doing ever getting out of bed or attempting to accomplish or learn anything? How is it possible that so much can be wrong with me? I've been thinking about it a lot more lately. Sometimes it just doesn't seem real. I'm so frustrated and sad I could scream. I can feel a true panic attack coming and I don't even care enough to try to stop it right now.

It's been an hour or so since I wrote this. I had a meltdown. I vented and cried on my mother's shoulder. Literally, she hugged me and I cried on her shoulder. Then we sat and talked about everything. I made a hundred different points, each one at a frenzied pace, each one leading to another. I kept saying, "what it comes down to is ______." Each time I filled in the blank with some revelation or question. Usually, just being asked what's wrong and saying it out loud helps. Sometimes I need real advice and direction but more often than not, I just need to get it out of my system. This time, I listened as she told me story after story of how she dealt with extreme poverty, despair, divorce, and a spinal injury when she was raising me and my siblings. They are all stories I know well. But this time they were brought out for the purpose of relating to me. She really tried hard to relate to me and validate my feelings. I understood those stories a little better. We talked about guilt over burdening people with our troubles. She related but explained that it doesn't apply to her, that she wants to know what I'm going through, that it's so much better than being left in the dark. And I believed her. I suppose what it came down to is this, am I doing this right? Am I good at being sick? Is it reasonable or normal to feel the way I feel? She said yes, of course. But that is really what I so often want to know. Where do I stand? Give me something to compare this to or statistics or charts and graphs. I don't care, just something. I want to know how I'm doing. Should I pull it together or let it all out? Am I weak? Do I think this is worse than it really is? Or, is it worse than I realize? And on, and on, and on. I'm exhausted. I've cried all I can over this today. I've asked every question twice. I do feel better. I don't want to feel like this tomorrow. I'm trying to convince myself that these feelings come with the territory. But how can I know for sure? And, more importantly, why do I need to?