Tag Archives: chills

by

F.E.A.R. … for everything, a reason.

I have so much to say and nothing to say. I have never been so emotional in my life and never been so numb.

Quick recap: while having a “good day” last Thursday, I met with my old bosses, went to a two-hour doctor appointment and walked around the dog park for an hour. For five days afterwards, I was in extraordinary muscle and bone pain, had crushing headaches, could barely move, couldn’t stop crying and have had night sweats every night. Last night I took a quarter of a Norco and it took the edge off the pain. A quarter of a pill! People take, like, ten of those a day. I don’t get it.

After researching the number of cases of M.E. that are significantly worse because of enforced exercise or the patient pushing themselves, I am hanging in this limbo of fear. Fear of unintentionally overexerting myself and setting back my recovery permanently. Can I not go to the dog park? Should I not be talking on the phone? Should I stop people from coming to my house? Because the second I feel better and the pain eases up, I want to do things. And by “things” I mean take a walk, try cooking a meal, fold the laundry, play with the dogs. And what if I try drugs that make me feel better? It’ll be even harder to refrain from activity. God forbid my pain is taken away and I walk upstairs too quickly or laugh too hard. I’m also in fear of losing all muscle mass, all flexibility, all joint movement, and, scariest of all, fear of irreparable damage to my bones. Years ago I was diagnosed with osteopenia in my hips after a bone scan. I think it was 0.1 point off putting me in the osteoporosis range. They told me to take calcium, vitamin D and do weight-bearing exercise. Did I do any of those things? Nope. I started taking vitamin D about 6 months ago, I still don’t take calcium and now I’m not eating dairy and I’m unable to do weight-bearing exercise. Or cardio, obviously, which is sorely needed, since I’ve never done cardio workouts. My job was my exercise ~ running around restaurants ~ and yoga, too, back in the day. I’m also in fear of the drugs that might make me feel better. I don’t want to try 20 antidepressants to find the right one, I don’t want to put on 30 lbs from Lyrica or gabapentin, I don’t want to feel groggy and crazy from sleeping pills, I don’t want to deal with weaning off and withdrawal symptoms… But, most of all, I’m terrified of an allergic reaction. Having experienced anaphylactic shock, swollen tongue, not being able to breathe, syncope, headaches that feel like you might die, low pulse etc… I know how scary it is. And I hope I never have to use my Epipen because I HATE epinephrine. It feels like I’m jacked up on speed and not in a good way. It feels like it stops my heart and then zaps it back at 5 times the normal heart rate ~ I won’t even let them use it at the dentist, I’d rather have a 100 injections in my gums than just one with epinephrine that’ll keep the anesthetic in my body. Finally, despite my 8 commandments, I am in fear of being home-bound (not homeward-bound, big difference. I wish I was…) for the rest of my life and losing my mind. Or, worse, being drugged out of my mind and my husband having to take care of me and losing his mind. Or, worse, getting worse in this disease or another disease or getting a cold or a chest infection or food poisoning or any of the millions of things that could make this so. much. worse. … and not caring anymore whether I even have a mind to lose.

So, my doctor appointment today. I had a physical and a stress test. They told me to fast for blood work, which turned out not to be necessary. I don’t know about you, but, not having my tea and breakfast in the morning messes everything up — and now that includes my supplement schedule — so, I was not functioning. I was shaking and achy and cold. My blood pressure was 84/60, my temperature was 99.4. A doctor finally touched me! He poked and prodded and said my labs looked fine (cholesterol, liver). Shocker. He wanted to do X-rays of my spine but I asked him to hold off because I have had a LOT of radiation lately and in life. He referred me to a neurologist and a rheumatologist (more doctors, yay) and gave me an Rx for Ambian CR and Lyrica.

I said, ” You’re starting me at the lowest dose of Lyrica, right?”
He said, “Yep, 75mg twice a day.”
I said, “If there is anything lower, PLEASE start me lower.”
He said, “Ok, 50mg twice a day.”
I said, “Ok, 50mg once a day.”
“Ok…50mg once a day to start with…at bedtime.”
“No, in the afternoon so I can monitor the effects.”
“Ok, fine…to start with. See me in a week so I can see how you’re doing on the Lyrica.”
“See you a week after I start the Lyrica?”
“Yes, which will be in ONE week because you’re starting it tonight.”
“Don’t count on it.”

That’s the exact conversation. I then went to do the stress test. They hook you up to electrodes and put you on a treadmill. It took about 45 minutes to get to the standing on the treadmill part. For fuck’s sake, I don’t care if you see me take my shirt off, you don’t have to explain everything in minute detail at a snail’s pace, I know what an electrode is, I know what a heart is, I am freezing and hungry and I’ve had no tea and I need to get home and sit down, hurry up! Here’s the sad part, I walked at 1 mile an hour for 2 minutes. It felt fine, like being at the dog park. Then she increased it to 2 miles an hour. This was fast for me. I don’t walk this fast since I got sick. I did it for 2 minutes and then the incline increased. I was fine, but starting to get worried about the repercussions. My thighs started to burn, but I was fine, it actually felt good. Burning muscles! What I would give to work my muscles so hard they burned from the effort and the next day I would be sore and think, “I had a great workout.” But, after the past 5 days, I was so scared of what this atypical movement would do to my body. The fear of tonight, the fear of no tomorrow. At the 6th minute, when the incline went up again and I really wanted to push myself, see how high my heart rate could go and feel my breath quicken, I quit. I felt okay, I felt I could have pushed through. I probably even could have run briefly, but I was too scared of what it would do to my muscles and how it might set back my recovery. The monitor moved and blipped steadily with my heart… But it didn’t show it breaking.

Title Credit

by

Sometimes I need a revelation.

There are different levels of terrible when it comes to my nights. The best case scenarios are the nights when I just sleep badly, kind of like I have my whole life: I wake up easily, I don’t sleep very many hours, I’m tossy turny…

Then there are the nights that are like those described here: nightmares, pain, what feels like mental torture… Those are godawful, of course, but it’s because my body and my brain are doing horrific things, as opposed to feeling like I am infected with a deadly bug. The infected-by-a-deadly-bug nights ~ the ones I call my “malarial episodes” ~ those are the worst, the most indescribable. Those were the nights I thought might kill me, that went on for 6 months, which I described in my diary excerpt here. They made me feel like I was close to death all night and then clawing my way back to life throughout the day, only to have to do it all over again.

In between those last two, are nights like last night. A mini-malaria. When you add drenching sweats to my night, it changes everything. ANY version of insomnia/cramps/nightmares/thrashing etc. is better than that coupled with the sweats. The night sweats I get are sickly. I’m not just sweating, I am shaking and my head feels swollen with red-hot infection. There is sweat behind my ears and behind my knees and running down my chest and dripping down my back and pooling in the low points of my face. I wake up trembling, cold, and scared. Last night, it didn’t last as long as the earlier days ~ I wasn’t incapacitated by cold bone-chills first and it wasn’t as scary ~ that’s why it gets a category all its own.

But, I had a revelation last night. Here’s what I want you to know about my night sweats: they have absolutely no bearing on how hot or cold the room is, whether I’m wearing clothes or not, and whether I’m covered with a duvet and blankets or just a sheet. I tested those options within the first few months of my sickness. We turned the heater on or left the windows cracked. We bought dust mite covers for the mattresses and pillows and duvet. We bought a new allergy-helping duvet and pillow and sheet, an air purifier, a humidity-checker device, we kicked the dogs off the bed and made sure to lift the blinds and air out the room so condensation and mold couldn’t grow ~ but not before 10am, so external allergens wouldn’t be at their highest levels. Blah blah blah.

The important fact was that I had never, ever in my life experienced night sweats until that night that I had gotten sick while writing Christmas cards. I got a very high fever in my teens ~ my mother could tell you if I was drenched in sweat, but I don’t remember it. As a child I remember sleeping on some hay (don’t know where I was), but I always remembered that night because I woke up hotter than I’d ever felt in my life. I was worried that the hay might start to smolder. That was the hottest I had felt while sleeping until this year. And I always joked that I don’t sweat. “I can sit in a sauna and not sweat”, I’d say, so this was a very abnormal thing to happen and it came on very suddenly.

Over the months, I had theories about the sweats and I was positive I was right every time. The doctors ruled out cancer and peri-menopause and all the typically things that cause unexplained sweats. At first I thought I was having a reaction to fatty and/or spicy food. I had one of the worst malarial-type episodes after eating a habenero enchilada and another time after eating fried chicken and macaroni and cheese and another time after a Christmas party at a steak house. I was sure I was right. I stopped eating dairy, gluten, high-fat foods. I wasn’t right. Then I was positive it was the birth control pill. I had been on it continuously for a year and it was Yaz ~ a pill that has had some pretty serious side effects with people (as an aside, my body felt great on it). So, I quit taking the pill for two months and nothing changed. However, when I took my opiate painkiller during my period, my sweats were much worse, so I decided they were caused by the painkiller. I went back on the birth control pill and stopped taking the painkiller. I was wrong. The sweats didn’t stop and I’ve been in pain ever since. Then I 100% believed it was my bowels. I knew, with no doubt, that the sweats happened when I was having bowel pressure of some kind in the night. But, through the last month of IBS awfulness from the new diet and supplements, I had no night sweats. And there was quite a bit of constipation pressure, let me tell you. So, I thought it must be anxiety. I must be having panic attacks in the night. The sweats stopped for the most part when I left work, so I thought this proved it. They came back for a few days when my best friend was coming to visit from Ireland, so I thought that doubly-proved it. However, there have been key times when it didn’t happen ~ when I was a big ball of fear and worry and I didn’t have the sweats. And there have been times when I’m feeling pretty good and positive and they did happen.

Which brings me to last night and my revelation. I’m not sure why it took me this long to see it. The sweats happen when I overexert myself. Evil, evil M.E. I left the house at noon yesterday and I didn’t get back until 6pm, which never happens ~ I’m usually far too careful. And I threw the ball for my dog at the park and I was thinking, “watch out with this activity, girl”, but I wanted to push myself a little and see what would happen. Today, my throwing arm is killing me and my back and my neck… it all hurts and aches. My headache will. not. go. away. But the sweats came, too. And I just realised I didn’t meditate yesterday. I don’t think I have missed meditation more than once or twice in 4 months.

So, not only does overdoing it cause the extreme muscle pain and aches the next day and make me couched, but it causes the sweats? I have to look back through my notes and see if this theory holds up. It is understandable that the sweats didn’t stop until after I left my job because my job was the overexertion. Then, I got a handle on what I could do or not do and the sweats subsided. So, I guess, I just can’t push myself? Then how do I know my limits? How do I get better? This morning, it hurts to move my eyes. Literally. It feels like I strained the muscles that hold my eyeballs and, when I chew, it is painful in my temples. Oh, and my chest is tight this morning and it hasn’t been in weeks. I just said to my husband yesterday: the only good change is no tight chest this month.

My sports medicine doctor, with whom I met to discuss my muscles, wants me to try Lyrica and Ambien. I don’t know anymore. I just don’t know.

by

Just when I thought I was out… it pulls me back in.

I should be used to the roller coaster by now. But somehow it feels even more cruel that I felt good yesterday and I am in bed today by 6pm, shivering, shaky, chilled, feverish, feeling scared and sick… I can’t live like this, I tell my husband.I let myself start sobbing even though I know it’ll make things worse. I don’t know how other people do it, but I can’t keep going like this. He says, You have to. We’ve had this conversation a hundred times. No, one day I won’t be able to anymore. I can’t keep getting my hopes up and then having them dashed. This isn’t worth it. Nothing is worth this, I say. One foot in front of the other. One day at a time, he says. It will be worth it. It has to be worth it.

Maybe I should scrap everything I’m doing. Start with sleeping pills, then anti-depressants, then pain killers… If this is going to be a lifetime problem, though, how do I commit to a lifetime of pharmaceutical maintenance? I can’t. But I can commit to a lifetime of good eating and relaxation practices, some exercise and laughter. Am I totally naive to think I can conquer this without heavy-duty drugs? Am I totally naive to think I can conquer this at all?

by

Dark Yin

I have another good doctor. Well, not actually a doctor ~ a master. The acupuncturist has a Master’s Degree in Acupuncture and Oriental Medicine and he was wonderful. As soon as I finished recounting my story, he said, “You have a bug”… which I think I needed to hear. I know I do and, interestingly, this is precisely the first thing my wise-doctor father said when he was here: “You’ve got a bug.”

Even if there was 100% concrete lab proof that I have M.E., most cases begin with a sickness, so must patients probably are infected with a bug. The Good Master acupuncturist said, “I have absolutely no doubt that something has taken up residence in you, but we don’t know if it’s bacterial, viral or parasitic. There are bugs we can find and treat, there are bugs we can find but usually wouldn’t test for, and there are bugs that we don’t have the ability to test for, so we’d never find them. In Chinese medicine, we treat for all bugs rather than looking for the particular culprit which could be hidden deep in the body.” They call the bad stuff that you can’t see or find “Dark Yin” and the problem it has caused with me is called “Gu Syndrome”.

Now, normally my ears slam shut when people talk about Chinese herbs or Oriental medicine. Like I said, I have always been a traditional Western medicine type of lady, but, if I’ve learned nothing else this year, I’ve learned that I don’t know shit. Who am I to say that this or that is dangerous? Who am I to say that this or that will work or not work? None of the doctors I have seen has found anything wrong with me yet and none of them has any advice except sleeping pills and anti-anxiety meds. Who am I to take their tests, opinions and traditions as the only options?

I did tell him No. Way. when it came to taking the Chinese herbs. He asked me to research it and think about it. My husband says, “Of course you should try it!” Those of you dealing with this disease know that doctors give you no answers and you would do anything to get better, so I want to put this information out there for you to consider. I am going to upload a photo of the herbal remedy info sheet the Good Master gave me. Here’s the first line:

“A unique remedy for the important clinical phenomenon of Abdominal Gu Syndrome: difficult and treatment-resistant diseases (such as IBS, chronic fatigue, fibromyalgia) caused by chronic, often undiagnosable parasitic infections…”

Although I’ve gone over the genesis of my illness in my head a million times, our conversation today helped me see it more clearly and feel more hopeful. He said, “Can you pin-point the day you got sick?” And I CAN. That’s why I think the Bad Bug scenario rings true. I was on vacation in Virginia, when, very suddenly, a got diarrhea. Believe it or not, I’d never in 38 years had the traveler’s diarrhea that people talk about. I was not nauseous, I did not vomit, just diarrhea that started suddenly and did not stop for a few days. I couldn’t eat ~ not really because of nausea, I just could not eat. I stared at an egg, willing myself to take a bite and I couldn’t. It scared me, brought me to tears ~ that had never happened, either. I thought everything resolved and then, three months later, I was writing Christmas cards and something started to happen to my body. I thought, Uhoh, I’m getting really sick. I moved to the couch and fell asleep for an hour, then, I woke up and told my husband that something was very wrong and I was worried that I might have to go to the hospital. It was the first cycle of chills and sweats that would continue for 9 months. “Chills and sweats”, of course, is a description that does not do it justice. For a better picture, read my diary excerpt:

https://ldndiary.wordpress.com/2012/08/31/how-my-cfs-me-began-an-excerpt-from-my-diary/

Now I wonder, did the Dark Yin take hold of me in Virginia, make me sick for 3 or 4 days, burrow deep and incubate for another 2.5 months and then start making me very sick? It was cyclical; it seemed like a parasitic life cycle, that’s why malaria fit so well. But my body couldn’t fend it off for whatever reason.

Feel free to not read past here. Below is my own investigative work for my own records. Believe it or not, I have never looked at the timeline.

During this whole time between June and December of last year, I was seeing a sports medicine doctor, a physical therapist and a massage therapist for my recurring, crippling neck injury. I also had to get two crowns over the course of these months, requiring multiple visits to the dentist. Also, when I look at my diary, I worked SO much. Every day was so busy and stressful and hectic. I didn’t take any time off whatsoever when I was sick ~ only for my trips to Ireland and Virginia.

June 17th-27th: In Dublin. I had a swollen tongue on 24th and 25th, took benadryls. I had a chilled/syncope/collapsy/low BP episode on the 26th, but didn’t go to the hospital.

Last week in June: continued to have swollen tongue.

July 11th: Saw Allergist who diagnosed me with autoimmune urticaria and angioedema and told me to take Zyrtec.

July 15th-26th: Acute bronchitis: short of breath, congestion, body aches, cough, mucous, sinus pressure.

July 22nd-24th: My Father’s visit.

August 6th: To Virgina.

August 9th-10th: Sick with diarrhea.

August 11th: Flew home early.

August 17th-21st: Drove to Boise, ID (with husband and dogs) for work.

October 9th-10th: Work retreat.

October 19th: Flu shot.

November 3rd/4th: Pretty sure I was sick with chills and sweats during this time.

November 17th-20th: Pretty sure I was sick with chills and sweats during this time.

November 22nd: Saw endocrinologist to talk about symptoms.

December 15th: Saw PCP to talk about symptoms and get malaria test.

December 20th-22nd: VERY sick.

December 27th: Was told malaria test was positive, but had two subsequent tests that were negative.

December 30th-January 1st, 2012: VERY sick. My mother’s visit.

January 3rd-10th: No appetite, severe chills, heart races, breathless just from standing up. Sweats every night, can’t eat, weak, lost 5 lbs, feel like I’m going to die.

I stuck out work for four more months before I had to leave my job to try to get better. The rest is history. The Dark Yin is still my dark passenger.

 

by

LDN Day 19… My visit to the sleep specialists.

Today I had the 4th (allopathic) doctor in a month bemusedly tell me there is no point in taking naltrexone. She shook her head and, with a quizzical look, said, “We don’t prescribe it – no doctor I know prescribes it. It was used in the past to help drug attacks, but I don’t understand what naturopaths are doing with it now. If you’re worried about taking drugs, melatonin is far, far safer than naltrexone.” Of course I know this. I know it’s not FDA approved, I know most doctors don’t prescribe it, I know it is a long- shot, but there are so many amazing stories out there, I felt like I had nothing to lose. Although, it’s true that I really have nothing to report except losing sleep, gaining weight and being constipated. The dizziness, sadness, fatigue, muscle pain, and all the rest of it seems to be the same.

Today was my sleep study consultation at the medical center. Luckily, these people actually seemed to be experts — it was a much better experience than the chronic fatigue circus. Although, it was still like pulling teeth to get information. The woman in the front office made a good point when I bitched to her about how doctors treat patients like they have an IQ of 50. She said that they have so many patients from different cultural backgrounds or with limited English or with limited education that doctors usually do dumb everything down. It was a good point. It’d be nice if they could really quickly read their client and adapt their communication and level of engagement, but I guess they leave that to the savvy bartenders and servers out there (do NOT underestimate what sort of skill is needed to be in the service industry — not only because of the patience, stamina, intelligence, and highly sophisticated organisational skills needed, but mostly because of the fine-tuned social tact and interpersonal communication skills that are necessary. In short, you have to be charming, perceptive, intuitive, smooth, have street smarts and be able to adapt to any situation, as well as all the physical and mathematical stuff. When a nuclear bomb decimates humanity, it’ll be the intelligent restaurant workers that are walking down The Road).

Anyway, today I had my sleep study consultation (by the way, it took me two full hours to fill out the paperwork for the appointment. Managing a health problem is a full-time job. Maybe I should make that my next career: managing the appointments, pills, paperwork, test results, Rx refills etc. for people. Problem is, no one with medical problems and medical bills can afford help…). They want me to definitely do the overnight sleep study because my insomnia is “quite complicated”. I don’t fit into the typical profile for someone that has sleep problems (don’t drink, smoke or do drugs, not overweight, not very old, don’t have any of the typical health problems, don’t have kids, don’t watch tv in the bedroom, don’t even have a job anymore). They gave me advice on how to change my lifestyle:

Don’t exercise or eat within three hours of sleep.
No tv or computer in the bedroom.
If you can’t sleep, get up — whether that’s at night or in the morning.
Don’t nap during the day.
No caffeine or alcohol in the evening.
Don’t read your book in bed.

Most of this is obvious and I already know. But, my problem is, if I go to bed only when I am so exhausted I feel like I must sleep, then I will either be in bed all day/night or I’ll never be in bed. I always feel like I could fall asleep and I always do, but then wake up half an hour later… I can do this cycle for 12 hours. They said the sleep study would measure how often I am in deep sleep, REM etc. and I said, wait, I have a Zeo that tells me that info. Is this as sophisticated as it gets? Thankfully, they said the sleep study would also measure my heart, oxygen levels, whether I have sleep apnea, whether I snore, how much I thrash about and the brain monitoring shows much more than the Zeo. They said, even though it may feel like I wake up 16 times a night, my brain might actually be so active that it is more like hundreds of times a night in terms of sleep quality. Also, if I happen to sleep like a baby when I am in the hospital, it might just be a vicious cycle of my worry about not being able to sleep causing me to not sleep. In which case, they recommend drugs. They couldn’t believe I hadn’t caved and tried sleeping pills during the last 30 years of bad sleep and, especially, the last year of nonexistent sleep.

For the last 6 nights, I have only had 6 hours sleep each night, but it honestly feels like 2. I am so tired! But I am still taking the LDN and sticking with the diet and the supplements. Tonight, I might start taking melatonin again and up the dose to 1mg. The doctor today laughed at me when I said I had been taking 0.5mg. She said, “Do you mean 5mg?” They never start anyone lower than 3mg.

The pulled muscle in my back feels better, so, my goal today is get to the dog park and finish the laundry. And meditate without falling asleep per the doc’s instructions.

Finally, I am grateful for my husband. It’s almost futile to write about it because there are no words to express the depth of my gratitude. I found the kindest, most generous, most patient, most selfless man in the world (or, at least, in MY world ;)). He has literally saved my life more times than I can count and he takes care of me in sickness and in health.