What My Pain is Actually Like

It occurred to me one day several months ago that I’ve never stopped to answer a question people may have, the same question I often wonder about others in my situation: When I talk about being in pain, what am I actually talking about?

In my case I’m talking about severe head pain, and what some call “malaise,” but… Malaise is what you call it when you are sick and you feel “off,” and unwell, and basically.. gross. It’s also a term you can use for having something as simple as a cold or as insufferable as AIDS, much like a fever has drastically varying levels of severity.

In “malaise” standards, what I feel is like my immune system is fighting to save my life but it may or may not actually take me down with it. Pain is usually localized, or at least, if it’s everywhere, it’s an identifiable ache. This? Maybe I should invent a new term.

Deathlymalaise. Yeah that sounds about right.

What happens in my newly coined “deathlymalaise” (feel free to use that), is this:

  1. I always have “the” headache with it, the one I’ll discuss in a moment.
  2. I have a low-grade fever, and I alternate rapidly–or maybe there is only the sensation of rapid cycling–between uncomfortably warm and sweaty, and clammy, cold, with freezing and numb extremities. It’s like when you have the flu and every five minutes you’re either tossing the blankets across the room or clambering to collect anything made of fabric and burrito yourself in it. My GP says this is my immune system. Apparently it’s trying to figure out what to do with itself.
  3. I feel dizzy and there is often a “buzzing” sensation, but whether it’s nerves sending wrong signals or my vascular system trying to sustain normal circulation, is anyone’s guess.
  4. My lymph nodes, particularly the axillary and cervical nodes (under your arms, and around your neck), have a constant, dull ache, and get stabbing sensations.
  5. I get muscle spasms in my neck, back, and all around my abdomen in general, that are so sudden and severe I usually end up screaming.
  6. I feel a burning sensation in the nerves in my face, as if they were on fire from the inside-out. I think it comes from the same inflammation responsible for my headache. The trigeminal neuralgia is thus usually activated and I have to stop myself from clawing at my face–that wouldn’t help much, now would it?
  7. I feel as if I’m going to vomit, but I won’t let that happen–I take Zofran as necessary.
  8. My joints–moreso on my left–swell and get stiff, difficult to bend or move.
  9. There is substantial fatigue during these “bursts” of deathlymalaise, but sitting or–more appropriately–lying in one place is usually not an option because this is the kind of suffering that, on the pain scale, would be at the level that it interferes with your every thought.

I’m a complete and utter wreck. And please remember, this list is only covering the malaise part of the illness, something that has been very prominent since The Big Relapse. It’s not medication withdrawal, because these symptoms are part of the reason I started taking anything to begin with, and it’s not herxing. It’s just disease. It makes me uncomfortable to even type that, but it is what it is. I can’t sugarcoat something like this.

I usually feel aghast–but almost in awe–at the reality that a person could possibly feel so horrendous, and helpless at the thought that a hospital–the place you’re raised thinking can always help you during any health crisis–cannot do anything, because there is nothing to stop what’s happening. How do you explain to someone how terrible all that feels, with the word “malaise”?

Several of my friends who also live with Lyme & Company admit to feeling this, and even writing letters or notes to loved ones during the worst “episodes” because they think surely something must be about to go very, very wrong for the human body to give out all these warning signals.

They usually say, “I feel like I’m dying.”

We really do.

 

The progression of my headaches has been a monster all its own. Their onset began with occipital neuralgia four months after my tick bite, almost seven years ago. Bartonella came with its own, mostly frontal-oriented headaches; I don’t have those any more. But almost without fail, I have had a particularly severe headache for 4-5 consecutive days every four weeks since the Lyme invaded my nervous system. Now, that exacerbation happens about every two weeks, thanks to the Mycoplasma.

I used to need prescription-strength medications for breakthrough pain only a few times a year for the attacks of occipital neuralgia. As things steadily progressed (especially within the past two years), I went from needing them an average of 1-3 days per month, to having 3-week-long bouts of unrelenting head paid which alternated with 3-pain-free weeks, seemingly for no reason. Since my relapse in October, I’ve needed them every day except 1-3 days per month. I guess all of this is why needing them so much frightened me: I wondered–and still wonder–if there is no turning back from this point. Regardless…

This head pain is a throbbing sensation at the back of my head, the base of my skull and down into my neck. I wouldn’t outright call it occipital neuralgia, because my attacks of O.N. are even more severe and almost completely untreatable. But otherwise, it’s just like them. Baby neuralgias? They even exhibit the so-called “ram’s horn pattern,” and the top of my head often goes numb, and I am sensitive to anything touching my scalp. There is no sensitivity to sound, but extreme sensitivity to light. I get bursts of nausea. Since vasculitis has been such a major feature of this relapse, these “headaches” may have some vascular component.

As of right now, later this month my pain management doctor wants to try a shot in my neck. I’m uncertain is he intends a nerve block for O.N. or another route, but since this has gone on so long, it’s time to try something new.

 

There’s not really a pretty way to sum this up. But when I talk about being in pain, to all of this is what I refer.

 

a rainbow at night

Appointment recaps: Pain management and LLMD

I may have to use the sentence structure of a five-year-old for this. Severe brain fog has kept me from typing my updates. But I may be able to get it done if I just try another way of speaking. I have a few sentences typed up from last week to go on…

Two weeks ago I set two new blog records. I feel special! :) Probably the most amazing thing about this is that my words reach people all over the world. Had you told me as a child, One day you will grow up and share your words, and people everywhere, in dozens of countries, will read them and be helped by them, I would have called you crazy. Technology can be so amazing, when used in a way that is beneficial.

I had my usual beginning-of-the-month flare, but I was able to get through it a lot better because I have adequate pain management… Or suffering-management, I should say. So much coughing, coughing, coughing. But my appointment with the pain management specialist went very well and I have what I need to cope. I no longer have to ration out meds and I think I’ve come to terms with being a chronic pain patient for the time being. As long as I stick to the schedule and not try to see how long I can last without them, I am okay.

I am able to stretch daily again, which is amazing and a big help. With continued exercise I should keep my muscle tone and gain more muscle stamina, which is really important because goodness knows what I face ahead of me.

I had my LLMD appointment but we didn’t have much time to speak because he is busy and overbooked. But I’ll take a twenty-minute appointment in comparison to no appointment. We really didn’t have time to go over much, but I have been given instructions to attempt Amoxicillin; do a round of Diflucan to make sure yeast isn’t a problem; and see a chiropractor in the event that it may help my headaches. I’ll make another appointment in January.

Right now I am taking Diflucan, one pill a day, which I can handle as long as I am properly medicated. And taking my probiotics to rebuild my poor GI tract while I’m off antibiotics. Beginning “next year” I shall attempt treatment again… Everyone is hopeful that,  just like being properly medicated is allowing me to take the Diflucan, that perhaps having adequate pain management will allow me to withstand Lyme disease treatment. I am hopeful, too… Patients undergoing cancer treatment get help with their intense pain and discomfort; why shouldn’t I?

I won’t be treating all forms of Lyme. Ideally I’d be on Amoxil PLUS Biaxin PLUS Flagyl and treat ALL the forms so it would DIE AND STAY DEAD… But if we did that I, too, would die and stay dead, LOL. And Amoxil doesn’t treat Mycoplasma pneumoniae at all. But, if it’s all I can handle…? If I even can…! But who knows, maybe that is what I need right now, to ONLY kill some of the Lyme. Just like in the past when my body couldn’t deal with killing Bartonella and Mycoplasma PLUS Lyme, maybe now my body cannot handle killing Lyme PLUS Myco. Maybe now, I have to get the Lyme count down before I can deal with the Mycoplasma… Who knows!

On the plus side, that paper that explained how well various antibiotics attack Lyme, said “amoxicillin reduced spirochetal forms by ~85% – 90% and [cyst] forms by ~68%”–so that is good!

I’m just trying to go with the flow and enjoy my life in whatever form it is available to me. If you’re reading this, have a blessed holiday season and treasure your loved ones. :)

a rainbow at night

30 Things About My Invisible Illness You May Not Know

This is a survey of sorts that went around several years back, obviously before I ever made this site. It’s still going around, so I’ve updated some of my old answers in response to more recent developments, and decided to put it here. :) Feel free to fill out this survey for your own blog! (The blank form is at the link.)

  1. The illness I live with is: primarily Myalgic encephalomyelitis (M.E.) and Borrelia burgdorferi (Lyme disease), complicated by additional infections for which I have tested positive: Bartonella quintanaBartonella henselae, andMycoplasma pneumoniae. There is no cure for M.E., and because of immunodeficiencies and extremely delayed diagnosis, I have late stage neuroborreliosis. I finished treatment for bartonellosis, but the disease is prone to relapse, and by mid-2013, it did.
  2. I was diagnosed with it in the year: 2002 for M.E.; 2009 for the rest.
  3. But I had symptoms since: 2000-2002 for M.E.; 2006 for Lyme disease; and 2008 for the rest.
  4. The biggest adjustment I’ve had to make is: putting forth a conscious effort to consider how every little thing I do (or don’t do) will affect me longterm. This is the crux of being a spoonie.
  5. Most people assume: that either none of these illnesses exist at all, or that they have no potential to go chronic or cause the level of disability I experience. Oh, don’t mind me, I’m just dying from something you don’t even believe in, that makes perfect sense…!?
  6. The hardest part about mornings are: dealing with the surge of pain I feel from lack of medication overnight; making sure I don’t pass out; stabilizing my autonomic nervous system.
  7. My favorite medical TV show is: Mystery Diagnosis.
  8. A gadget I couldn’t live without is: my smartphone!
  9. The hardest part about nights are: sometimes my headaches are worse by then.
  10. Each day I take ___21___ pills & vitamins.
  11. Regarding alternative treatments I: have been helped more by herbs and specific supplements than any pharmaceutical drug, as far as the M.E. is concerned; but without the drugs for Lyme disease and the infections I picked up, I doubt I’d be typing this right now.
  12. If I had to choose between an invisible illness or visible I would choose: invisible, because I’m not a fan of attention and I like the option of blending in. Using mobility aids like canes, wheelchairs, and mobility scooters has brought me to the visible spectrum, and I still prefer invisible, with that in mind. But I really don’t have to choose, I guess–I’ve been both!
  13. Regarding working and career: I think this blog is the closest I get to working. I consider myself to be where God wants me, bettering my soul, and it just so happens said soul wanted to do that through the experience of sickness. As a wise woman once said, there was never a version of this life for me where I wouldn’t have been sick. I.e., this is what I have to work with! Every day I do the best I can for my body so that my soul can continue its journey here.
  14. People would be surprised to know: just how sick I get AFTER they see/visit with me, because my worsening can be delayed by 24 hours or more; that phone conversations give me a fever; that continuous typing or texting can lead me to muscle paralysis.
  15. The hardest thing to accept about my new reality has been: that the odds are, statistically, against me.
  16. Something I never thought I could do with my illness that I did was: travel across the country during nine days of feeling miraculously better (though it still ended with me in the ER) to accomplish my bucket list dream of visiting San Francisco, watching the sun set into the Pacific ocean, and seeing the majestic Redwoods in the Avenue of the Giants. Also, helping so many people with the words I share. At the time of my first editing this post, my site had exactly 26,000 page views. Now on my second edit (2014), it has had over 60,000… How is that even possible? I’m in awe.
  17. The commercials about my illness: are non-existent, which is almost good, because most common information about them is completely false and I’d rather people have no knowledge and come to me with questions, than to have a falsely constructed preconceived idea and think they already know everything because “the television said so.”
  18. Some things I really miss doing since I was diagnosed are: driving; getting lost in a drawing; walking normally/significant distances; laughing without consequences; visiting loved ones without having to plan for it a week or more in advance; being spontaneous…
  19. It was really hard to have to give up: my independence.
  20. A new hobby I have taken up since my diagnosis is: watching concerts on DVD; public blogging; painting; zentangles.
  21. If I could have one day of feeling normal again I would: RUN. FREAKING. EVERYWHERE.
  22. My illness has taught me: patience; acceptance; mindfulness; the importance of perspective; compassion; that I am more than what I can do for others; that I am more than what I “do,” period.
  23. Want to know a secret? One thing people say that gets under my skin is: when people attempt to relate by comparing situations that in absolutely no way are similar to living with severe illness. You don’t see me claiming to know “just what it’s like” to lose a child, do you?
  24. But I love it when people: know how to fight for what they want; I respect that.
  25. My favorite motto, scripture, quote that gets me through tough times is:
    “It is the greatest mistake of all to do nothing because you can do only little; do what you can.” (Sydney Smith)
    “When nature moves swiftly, it destroys.” (David Bate)
    “Smile, breathe, and go slowly.” (Thich Nhat Hanh)
    But He said to me, ‘My grace is sufficient for you, for My power is made perfect in weakness.” (2 Cor 12:9)
    I can deal with anything as long as I remember that whatever I need on any given day, it will be available to me. I believe the Universe looks out for us, and that there will always be enough, until there isn’t. Like Thich Nhat Hanh says, when conditions are sufficient, things manifest; when conditions are not sufficient, these manifestations withdraw.
  26. When someone is diagnosed I’d like to tell them: that their life isn’t over. And to properly educate themselves about the illness. As far as M.E.: Do not listen to anyone that says you “just need more exercise” because that one mistake can change the course of the entire disease. As for Lyme: If someone even mentions the phrase “post lyme syndrome,” claims you can’t have it because the test was negative/you didn’t have the rash, or claims that your symptoms must be something else just because you’ve already had the standard one month of antibiotics, get as far away from them as possible and find an educated Lyme-literate physician.
  27. Something that has surprised me about living with an illness is: (1) how many people there are who want to blame YOU for being sick, because the thought of anything happening outside of their control terrifies them; (2) how many people abandon you when you get worse, for much the same reason; but also (3) how much some people are truly willing to help, and (4) how your closest friends will find a way to keep in touch with you.
  28. The nicest thing someone did for me when I wasn’t feeling well was: not blame me for the disease worsening; cook dinner for me; bring me back food from a restaurant: clean my house; spend hours drawing things for me; mail me CDs and letters and tea without any expectations that I’d reply (because often I can’t); insert many more things here, because I’ve been truly, truly blessed with support.
  29. I’m involved with Invisible Illness Week because: I think filling out this survey will help others feel less alone.
  30. The fact that you read this list makes me feel: like someone cares.

Find out more about Invisible Illness Awareness Week at their website. In particular, you can sign up for their updates to receive a free chronic illness e-book on “263 ways to do more than ‘just get by'”! I’ve browsed through it and it has a little bit of something for everyone.

a rainbow at night

last updated 2014, July 2nd