Tag Archives: M.E./C.F.S.

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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

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A definition of MYALGIC ENCEPHALOMYELITIS:

This is what I have, without a shadow of a doubt in my mind, and I no longer need a doctor to stop dancing around the diagnosis and say it to me. My symptoms are too black and white. 99 of my symptoms could be many conditions and 1 of my symptoms ~ the biggest, baddest one ~ can be only one condition that I know of and that is myalgic encephalomyelitis. Taken from: http://www.name-us.org/DefintionsPages/DefRamsay.htm (I have bolded the important points to my case)

MYALGIC ENCEPHALOMYELITIS:

A Baffling Syndrome With a Tragic Aftermath

by A. Melvin Ramsay M.D., Hon Consultant Physician
Infectious Diseases Dept., Royal Free Hospital
(Pub. 1986)

The syndrome which is currently known as Myalgic Encephalomyelitis in the UK and Epidemic Neuromyasthenia [Chronic Fatigue Syndrome] in the USA leaves a chronic aftermath of debility in a large number of cases. The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.

Although the onset of the disease may be sudden and without apparent cause, as in those whose first intimation of illness is an alarming attack of acute vertigo, there is practically always a history of recent virus infection associated with upper respiratory tract symptoms though occasionally there is gastro-intestinal upset with nausea and vomiting. Instead of making a normal recovery, the patient is dogged by persistent profound fatigue accompanied by a medley of symptoms such as headache, attacks of giddiness, neck pain, muscle weakness, parasthesiae, frequency of micturition or retention, blurred vision and/or diplopia and a general sense of ‘feeling awful’. Many patients report the occurence of fainting attacks which abate after a small meal or even a biscuit, and in an outbreak in Finchley, London, in 1964 three patients were admitted to hospital in an unconscious state presumably as a result of acute hypoglycaemia. There is usually a low-grade pyrexia [fever] which quickly subsides. Respiratory symptoms such as sore throat tend to persist or recur at intervals. Routine physical examination and the ordinary run of laboratory investigations usually prove negative and the patient is then often referred for psychiatric opinion. In my experience this seldom proves helpful is often harmful; it is a fact that a few psychiatrists have referred the patient back with a note saying ‘this patient’s problem does not come within my field’. Nevertheless, by this time the unfortunate patient has acquired the label of ‘neurosis’ or ‘personality disorder’ and may be regarded by both doctor and relatives as a chronic nuisance. We have records of three patients in whom the disbelief of their doctors and relatives led to suicide; one of these was a young man of 22 years of age.

The too facile assumption that such an entity – despite a long series of cases extending over several decades – can be attributed to psychological stress is simply untenable. Although the aetiological factor or factors have yet to be established, there are good grounds for postulating that persistent virus infection could be responsible. It is fully accepted that viruses such as herpes simplex and varicella-zoster remain in the tissues from the time of the initial invasion and can be isolated from nerve ganglia post-mortem; to these may be added measles virus, the persistence of which is responsible for subacute sclerosing panencephalitis that may appear several years after the attack and there is a considerable body of circumstantial evidence associating the virus with multiple sclerosis. There should surely be no difficulty in considering the possibility that other viruses may also persist in the tissues. In recent years routine antibody tests on patients suffering from myalgic encephalomyelitis have shown raised titres to Cocksackie B Group viruses. It is fully established that these viruses are the aetiological agents of ‘Epidemic Myalgia’ or ‘Bornholm’s Disease’ and that, together with ECHO viruses, they comprise the commonest known virus invaders of the central nervous system. This must not be taken to imply that Cocksackie viruses are the sole agents of myalgic encephalo- myelitis since eny generalised virus infection may be followed by a period of post-viral debility. Indeed, the particular invading microbial agent is probably not the most important factor. Recent work suggests that the key to the problem is likely to be found in the abnormal immunological response of the patient to the organism.

A second group of clinical features found in patients suffering from myalgic encephalomyelitis would seem to indicate circulatory disorder. Practically without exception they complain of coldness in the extremities and many are found to have abnormally low temperatures of 94 or 95 degrees F. In a few, these are accompanied by bouts of severe sweating even to the extent of waking during the night lying in a pool of water. A ghostly facial pallor is a well known phenomenom and this has often been detected by relatives some 30 minutes before the patient complains of being ill.

The third component of the diagnostic triad of myalgic encephalo- myelitis relates to cerebral activity. Impairment of memory and inability to concentrate are features in every case. Many report difficulty in saying the right word and are conscious of the fact that they continue to say the wrong one, for example ‘cold’ when they mean ‘hot’. Others find that they start a sentence but cannot complete it, while some others have difficulty compre- hending the written or spoken word. A complaint of acute hyperacusis is not infrequent; this can be quite intolerable but alternates with periods of normal hearing or actual deafness. Vivid dreams generally in colour are reported by persons with no previous experience of such a phenomenom. Emotional lability is often a feature in a person of previous stable person- ality, while sudden bouts of uncontrollable weeping may occur. Impairment of judgement and insight in severe cases completes the ‘encephalitic’ component of the syndrome.

I would like to suggest that in all patients suffering from chronic debility for which a satisfactory explanation is not forthcoming a renewed and much closer appraisal of their symptoms should be made. This applies particularly to the dominant clinical feature of profound fatigue. While it is true that there is considerable variation in degree from one day to the next or from one time of the day to another, nevertheless in those patients whose dynamic or conscientious temperaments urge them to continue effort despite profound malaise or in those who, on the false assumption of ‘neurosis’, have been exhorted to ‘snap out of it’ and ‘take plenty of excercise’ the condition finally results in a state of constant exhaustion. This has been amply borne out by a series of painstaking and meticulous studies carried out by a consultant in physical medicine, himself an ME sufferer for 25 years. These show clearly that recovery of muscle power after exertion is unduly prolonged. After moderate excercise, from which a normal person would recover with nothing more than a good night’s rest, an ME patient will require at least 2 to 3 days while after more strenuous excercise the period can be prolonged to 2 or 3 weeks or more. Moreover, if during this recovery phase, there is a further expenditure of energy the effect is cumulative and this is responsible for the unrelieved sense of exhaustion and depression which characterises the chronic case. The greatest degree of muscle weakness is likely to be found in those muscles which are most in use; thus in right- handed persons the muscles of the left hand and arm are found to be stronger than those on the right. Muscle weakness is almost certainly responsible for the delay in accommodation which gives rise to blurred vision and for the characteristic feature of all chronic cases, namely a proneness to drop articles altogether with clumsiness in performing quite simple manoeuvres; the constant dribbling of saliva which is also a feature of chronic cases is due to weakness of the masseter muscles. In some cases, the myalgic element is obvious but in others a careful palpitation of all muscles will often reveal unsuspected minute foci of acute tenderness; these are to be found particularly in the trapezii, gastrocnemii and abdominal rectii muscles.

The clinical picture of myalgic encephalomyelitis has much in common with that of multiple sclerosis but, unlike the latter, the disease is not progressive and the prognosis should therefore be relatively good. However, this is largely dependent on the management of the patient in the early stages of the illness. Those who are given complete rest from the onset do well and this was illustrated by the aforementioned three patients admitted to hospital in an unconscious state; all three recovered completely. Those whose circumstances make adequate rest periods impossible are at a distinct disadvantage, but no effort should be spared to give them the all-essential basis for successful treatment. Since the limitations which the disease imposes vary considerably from case to case, the responsibility for determining these rests upon the patient. Once these are ascertained the patient is advised to fashion a pattern of living that comes well within them. Any excessive physical or mental stress is likely to precipitate a relapse.

It can be said that a long-term research project into the cause of this disease has been launched and there are good grounds for believing that this will demonstrate beyond doubt that this condition is organically determined.

The only thing that does not pertain to me here is the drooling and the attacks of giddiness, although, that visual coupled with my brother pointing out the awesomeness of a virus called “cocksackie” has me in a fit of giggles, so maybe I do have the giddiness. Giggling while weeping ~ Is this the emotional lability of which they speak?

Also, from the patient guide for ME/CFS that was put together by Stanford University:

While in recovery, please do NOT overexert yourself.

A lot of our patients report that their level of functioning feels like a rollercoaster.  This description shows that the patient is overdoing it, and we believe that this behavior may seriously jeopardize the patient’s potential for a full recovery.  As soon as patients start to feel better, it is natural to want to increase their activity level; however, this is not advisable during the initial recovery process because it will likely lead to a crash. We hypothesize that these crashes, or episodes of heightened fatigue, may have a cumulative effect on a patient’s health, and may compromise the patient’s potential for a full recovery. Imagine that every time you crash, your immune system overreacts as a response (as CFS may be an autoimmune disorder).  As a result, the immune system attacks your body’s own cells in the Central Nervous System (CNS). Once these cells are damaged they may never recover.  Even in the best-case scenario, when the viruses have been successfully treated and kept at bay, the damage that has already been done to the CNS may never be repaired.  This may prevent the patient from fully regaining his or her cognitive and physical capacities.  Theoretically this is how overdoing it and the subsequent crashing may have a long-term negative effect on health. Each patient is unique and should develop a routine level of physical and cognitive functioning that is appropriate for him or her.  Patients should feel like their functioning level is constant from day to day, so that they are not experiencing any crashes.  We feel that only once patients have learned to function under their threshold for crashing have they optimized their treatment plan and their chances for a full recovery.

So, after weeping for three days straight, mourning my old life, here is what I realise: This isn’t going away. I have barely been able to move for three days and today I still feel like shit. My throat is killing me. I can’t push myself to see where my limits are because my limits are much closer than I thought and (what I didn’t know), if I push myself and crash repeatedly, my chances of recovery are not as good. What this week has taught me is that my brain does not do well holding out hope. I cannot and will not think that change is right around the corner because, each time it doesn’t change, I am devastated anew. Every time I have a good day and think, This is it. I’m turning the corner. I’m getting my energy back. This is the beginning of the end… I wind up pushing myself too hard, wind up immobile in indescribable pain, wind up emotionally destroyed, in the darkest of dark places. And that place is blacker and deeper every time I go down there. HOPE is not my friend at all and, the analytical part of my brain finds this very interesting. Who would have thought the very last thing I need is to have hope for what’s around the corner? What I need is to say, Right, this is it. Let’s find a way to accept this and start a different kind of life. There must be others who have an illness and react this way when someone says, “I just know you’ll get better.” I guess that’s why the Good Doctor made a point of saying she will hold hope ~ so I can lose hope and it’s okay.

The upshot of this is:

  • I may not work again. For now, I will move forward assuming that this is going to last forever so I stop looking for my next career.
  • I may not leave this city again. In fact, more importantly, I will move forward under the assumption that I may only leave this house for doctor appointments.
  • I will stop trying to plan lunch dates with friends or buying tickets to shows 6 months away because I hope to be better. I will move forward assuming that I simply am not up to anything and can’t leave the house and will not be getting better.
  • Now that I’m not working, I’ll stop trying to be a housewife. If I can’t do the dishes, the laundry, the cleaning, the cooking, then I won’t. And I won’t feel guilty.
  • I will look for joy and a quality of life in these four walls. I will try to accept that this is my new life, stop mourning my old life, and stop dreaming about my future life.
  • I will accept that I may never find an answer to why this happened and how this happened.
  • I will accept that I may do what I’ve been doing the last few months for the rest of my life. My life may be writing, reading, tv, phone conversations, dog walks (please god) and that’s it.
  • Finally, I will come out of the closet. I have begged those that know about what’s going on with me to keep it quiet. I don’t identify with being sick and I didn’t want anyone to think of me that way. I thought I would quit my job and everything would get better and I could go back to normal life and nobody would really need to know that it was anything more than hard-job-burnout. But, now I will accept that people should probably be told. And I will accept that nobody will understand.

That’s my plan. Can I do it? I don’t know. Will you all do me a favour? Will you please keep reminding me that I can have a happy, good quality of life if I never leave my home? Will you please remind me of the good things and show me pieces of joy where I might not see them? When I get overwhelmed by the Dark Yin, will you say, “Let’s Skype!” or “Go put on some music and move a little” or “Maybe you can play Banangrams with your husband” or “Pretend you’re a monk ~ they do okay in isolation.” I mean it. Sounds crazy, but I’m going to need it. I’m not going to need anyone to tell me how this is going to get better. Just remind me that I’ll be okay right where I am today.

I am grateful for all people ~ family, friends, doctors, researchers ~ that believe beyond a shadow of a doubt that there is this disease that comes out of nowhere and changes lives, even though all current Western medicine tests are normal. I am grateful to all people who understand the depression and anxiety and fear surrounding this illness and don’t think the answer is to treat those things or ~ worse ~ that those things caused this illness. I wish I could put any doubter into my body 2 years ago and into my body now.

…What’s the use in tryin’
All you get is pain
When I needed sunshine I got rain

Yes, I saw her face
Now I’m a believer
There’s not a trace
Of doubt in my mind
Well, I’m a believer

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LDN Day 28… Never came.

First of all, I feel better this afternoon. I’m even entertaining the notion of taking a walk. Friends and family, please don’t worry about me based on what you read on my blog. I am truly treating this like an online diary. It is incredibly theraputic and, even when I have no energy, I find myself wanting to put my thoughts down “on paper”. It’s the first time I’ve felt driven to write since college, so I’m enjoying enjoying it. If I’m not honest on this blog, I won’t be able to look back and see honestly how this journey progressed. PLUS, the honesty might help others out there not feel so alone. So, just know: I’m a fighter, I have hope and I will persevere regardless of what I write on here. If that changes, I promise you’ll hear from me personally. Just once in a while, when it gets really bad, I will need to be reminded of my courage and resilience ~ of the person I was and still can be. And of human resilience ~ how we can come through virtually anything.

I talked to my husband, my bffs, and my Dad. Sometimes, just being able to voice the fear and anger is all you need. As long as the person listening actually listens (which those closest to me do, thank god). That’s part of my fear and anger in all this, too, is the incredulity one has to face. “You look okay, so you just don’t feel okay?” “Sitting at home all day not working sounds awesome.” “You can’t even come for a few hours?” “Your sleep is that bad and you’ve never tried a sleeping pill?” “Just lift weights!” “What do you mean you feel ‘sick’?” It’s the reason I’m putting it all online. Those that understand might get help and support from it, those that don’t understand needn’t read it. Also, while looking for some bolstering or something, I put some of my last post on a CFS forum of which I’m a member. One person replied and said the anger never goes away, but you have to crowd it out with positive thoughts so it doesn’t poison your soul. Another said she was diagnosed when she was 32 and, if she had given up, she wouldn’t have seen her children graduate and get married and she wouldn’t know her grandchildren now. That helps. I don’t have children, but it’s helpful to know that, no, the anger doesn’t go away, but there are many more positive experiences in my future that will crowd it out (her words, perfect visual).

So, I’ll do what my therapist taught me and tell anger to take a seat.
I hear you, Mr. Anger, but you have to turn down the volume a little. I’ve got this under control. Be quiet and wait your turn, Ms. Hopelessness, I’m letting Mr. Anger talk right now.
I literally envision leading a management meeting because that is what I am used to doing. All these big personalities who think they could be running the company better, clambering to be heard, totally selfish and scared they won’t get their chance to speak their mind… And I just have to let them know, like I’ve said before:
I got this. I’ll listen to you, I’ll take you into consideration, but I’m the one running the show, so pipe down and have some faith.
It’s actually hilarious to think that that is what all my money paid for ~ the ability to talk to my different personalities and make them behave. I said to my therapist, “Great, so I’m Sybil?” and she said, “We’re all Sybil.” Ha!

Having said all that, I never took my low-dose naltrexone yesterday. I’m going to give it a break. Maybe for a week, maybe for a year, maybe for forever. Right now I need to ascertain if it is contributing to my sleep problems and possibly my mood. Maybe I’ll start the Chinese herbs, maybe I’ll do a course of antibiotics. I should probably change the name of this blog, though, if I’m discontinuing the LDN…

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Message to the doubters (warning: strong language).

I’m happy to be alive today. I’m happy to not be in a hospital today. I’m happy to have the will to pull myself upright after about 24 hours of being horizontal and get this off my chest.

To anyone who thinks myalgic encephalomyelitis doesn’t exist because the TESTS don’t show anything wrong or some asshole somewhere couldn’t figure out what to call the thing that was happening to histrionic overworked ladies who couldn’t handle the pressures of modern society and decided it should be coined chronic fatigue syndrome, which would for evermore stigmatize the patients…. Fuck you.

Until you have what I have and until you go through what I go through, how dare you pass judgement or think you know better. What I have is killing me. It is ruining all quality of life and taking my family down with it. I’m not tired, I’m not in pain, I’m not depressed… I don’t have the words to describe this disease. I can say, with no emotion and complete clarity of mind, that I don’t want to live like this. That I’d rather die. Does that mean that I’m clinically depressed and suicidal? I don’t think so. It simply means that there might come a time in the future when I have to decide that I am either okay living this new way ~ very little moving, very few activities, very little interaction with people, probably not leaving my house much, probably never having a job that isn’t from home with flexible hours ~ and be happy with it, or decide that I can’t do it.

I was once very full of life. I was once energetic to the point of being annoying. I made my living in a very physical career with a dizzying amount of multitasking, responsibility, and challenge. So, how do I accept my new role? I don’t want to accept it if it means constant pain and management of symptoms. That’s not what I’m here for. I don’t know how to get there.

I have 100 symptoms, you’d laugh if I listed them, but, out of all of them, there is one problem that is very distinct, completely life-altering, and only seems to be talked about in the context of myalgic encephalomyelitis. If I have a “good” day and forget that I am sick and must strictly manage my energy and activity levels, I pay for it the next day with what feels like death. This is so real, so dire, so misunderstood.

Yesterday, as the day progressed, I became more and more incapacitated, immobile, had crushing pain and felt completely unstable. I am not exaggerating when I say my body felt like I had been in a terrible car crash. I was in pain from head to toe. Muscles I didn’t know existed were in pain. Internal muscles were in pain. My diaphragm was in pain, making my breathing heavy. I could barely turn my neck. This isn’t normal pain, though. This is inflamed, swollen, tender, red, throbbing pain. As if every muscle is infected. You touch me and I wince; I move and I groan. There were silent tears running down my face all day. My headache couldn’t be touched by over-the-counter pain meds, I continuously felt dizzy and feverish and faint. I checked my blood sugar and my blood pressure. I told my husband, I don’t know what’s going on, but we may have to go to a hospital this time. I hate hospitals, so that’s saying a lot. Every time I stood up, my heart raced. That’s a scary feeling so I google “tachycardia upon standing” and it comes up with “Postural Orthostatic Tachycardia Syndrome” (POTS) and, lo and behold, it is related to and often found in conjunction with chronic fatigue syndrome.

So the pain is fibromyalgia and the dizzines is low blood pressure and hypovolemia and the fainting is vasovagal syncope and the racing heart is POTS… I have reactive hypoglycemia, low blood pressure, autoimmune angioedema, anaphylaxis that nobody could ever find the cause of, asthma, constant sore throat, temperature problems (understatement of the century), no steel-trap brain anymore, IBS issues, hellish sleep problems and sweats….. AND NOBODY CAN GIVE ME A FUCKING DIAGNOSIS? Just based on the blood pressure/volume drops and the syncope that has landed me in the ER, somebody should be looking at an autonomic nervous system problem. Right?? Who does that? Cardiologist? Neurologist? I don’t even know.

But, you know what they’ll tell me? Eat salt, drink water, stand up slowly. I know because I can’t find a single doctor that wants to get to the root cause. And, honestly, I’m way more concerned that my body won’t allow me to go to the doctor and the dog park or else I’ll spend at least a day or two in crushing, indescribable, terrifying, paralysing pain.

Gratitude? I’m grateful that I’m alive and angry right now. The alternatives are no fun.

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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.