Surgery and ME/CFS

After two weeks of wonderful, solid sleep with few awakenings, I was beginning to see the light. Over the long weekend I started to feel more normal than I have felt in months ~ maybe a year. I could do so much more during the day and I was still feeling alright before bed. I didn’t have any periods of utter exhaustion or flu-type feelings and my brain was firing on more than one cylinder (not all cylinders, but obviously more than usual). My physical therapist and I always talk about movies, tv shows, music and books and I can never come up with names or titles: “Oh, you should read… I can’t think of the name… it’s written by what’shisname… you know, the American guy that was living in England…” I get so frustrated. There have been many times I wish I could text him after I get home and can look up the ten things I was reaching for. Yesterday, my brain was a smooth operation. It truly felt like somebody had lubricated the synapses. There was a sense of physical spaciousness. It was a well-oiled, humming machine, almost like my healthy days. “Edward Norton was great in Primal Fear. I loved him in American History X… Yes, I adore Kevin Spacey. He was so good in American Beauty. And Seven! Oh, and the David Mamet play… Glengarry Glen Ross ~ so good! And Swimming with Sharks. I’d love to be able to see him in Iceman Cometh on stage…” All those names! They just came to me! No searching, no hard grinding mental gears, no giving up in frustration. It just illustrated the limits with which I’ve been living.

Anyway, last night I didn’t sleep and I feel dreadful today and my head hurts and my brain hurts and I fear the worst for a downhill turn. I got 4 very broken, very uncomfortable hours of sleep because, in the middle of the night, I woke up with a terrible pain in my abdomen. It is a recurrent sharp stabbing in the upper right quadrant, which has me grimacing and sucking in air every few minutes, trying not to gasp or moan so my dog doesn’t panic (which he does when I’m in pain). Throughout the night, I did everything I could think of: walked, sat, breathing exercises, massaged, drank water… Nothing helped and it is still with me now, nine hours later and definitely has me worried. I assumed it is a issue in my bowel because that is where all my problems lie, but I spent the night lying in the dark quiet, worrying that is my appendix (also, I had a bowel movement and nothing changed). I’m not vomiting and I don’t think I have a fever, so I’m not jumping to see a doctor. But the pain hasn’t dulled at all and I am so, so tired. If it continues into tonight, I won’t get any sleep again.

As I lay there last night, I was tormented by the thought that it would suddenly get more serious and I would need surgery for something. I thought about all the info that I would want doctors and anesthesiologists to know in an emergency situation and decided I had to get up and write a doc that my husband could produce if I were incapacitated. Below is what I put together and I thought it might help someone out there. I wrote my own list and, afterwards, I read Dr. Cheney’s and Dr. Lapp’s advice online (to make my list more thorough) and it is incredible how closely I fit the ME/CFS mold. After two years it still amazes me when my health history PRE-ME fits all the symptoms and idiosyncrasies. For example, vasodilators are problematic to ME patients and I already knew this was a problem for me before becoming sick because of my history with idiopathic anaphylaxis and alcohol causing collapse. Also, the doctors mention sensitivity to epinephrine and I have always told my dentists not to use epinephrine in my shots ~ it has been a nusance for them because they have to give me injections over and over again as my body metabolizes the anesthesia so quickly without the epi. And I had low blood pressure and experienced vasovagal syncope decades before I came down with ME, so reading that Dr. Lapp says “Up to 97% of persons with CFS demonstrate vasovagal syncope” amazes me … still.

I would love to know if anyone has any more information for safe surgeries and/or hospital stays. I’m hoping preparing for emergencies can mitigate long-term crashes.

Here is Dr. Cheney’s advice for surgery and here is Dr. Lapp’s (they’re very similar). I also took Sue Jackson’s advice and made the first sentence: “The most important considerations are…”

The most important considerations are IV fluids, avoiding vasodilators and histamine-releasing agents, and my hyper-sensitivity to medications.

I have a history of hypoglycemia, idiopathic anaphylaxis, autoimmune urticaria and angioedema, Hashimoto’s, vasovagal syncope.

I am allergic to NSAIDS and CODEINE/HYDROCODONE and have other presumed allergies which may have caused tongue swelling (see attached list).

I have orthostatic intolerance (OI) and vasovagal syncope: low blood volume, low blood pressure, high heart rate when standing/moving. Please give me extra saline IVs. Care should be taken to give me adequate hydration prior to surgery and avoid drugs that stimulate neurogenic syncope or lower blood pressure. Syncope may be precipitated by cathecholamines (epinephrine), sympathomimetics (isoproterenol), and vasodilators (nitric oxide, nitroglycerin, a-blockers, and hypotensive agents).

I am extremely sensitive to drugs, usually taking ¼ doses or children’s doses. Please use all drugs sparingly until my reaction can be assessed and do not over-medicate me.

Vasodilators, such as nitrous oxide, should not be used because of my history with autoimmune angioedema, anaphylaxis and orthostatic intolerance.

Use anesthesia that does not release histamine: Histamine-releasing anesthetic agents (such as sodium pentothal) and muscle relaxants (Curare, Tracrium, and Mevacurium) are best avoided because of my history of idiopathic anaphylaxis and allergies.

Use a non-hepatic anesthesia: Potentially hepatotoxic anesthetic gases should not be used, such as Halothane.

BEFORE SURGERY: Serum electrolytes, magnesium and potassium levels should be checked preoperatively and these minerals replenished if borderline or low. Intracellular magnesium or potassium depletion could potentially lead to cardiac arrhythmias under anesthesia. A liver panel and a random serum cortisol should be checked prior to any general anesthesia. 24-hour urine cortisol is recommended before and after surgery.

I have a sensitivity to Epinephrine. For local anesthesia, perhaps use Lidocaine with no epinephrine.

I have a cervical spine injury. Please be careful and gentle when intubating!

It would be wise to keep me on oxygen the entire time I am in the hospital.

Prescription and over the counter medicines and supplements: Please see attached list.

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17 thoughts on “Surgery and ME/CFS

  1. Oh my gosh I hope your abdominal pain settles and isn’t anything serious. I liked this post not because I like that you’re in pain (I really sincerely dislike that) but because I’m so impressed with your advice for dealing with surgery with ME/CFS. That is so useful. I totally also get what you mean about still being surprised by how much you fit the ME mold; me too. I do the same with my pre ME life, it’s so obvious I had ME back then now I look back at things! Sending lots of soothing hugs and virtual pain relief; hope the pain settles really soon.

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    • E. Milo says:

      Thank you! I’m so happy you find it interesting/ helpful. We need to be prepared! I appreciate the virtual pain relief – since I’m allergic to pain killers, that’s all I have to rely on. 😉

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  2. Upper right quadrant pain is probably gallbladder/gallstones. So you are probably having a gallbladder attack. I just found out I have gallstones and I have denied surgery for now. (too scared and have no real after care plan if I need surgery since I live alone)

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    • Jackie says:

      I was going to suggest looking into your gallbladder as well. I had issues with mine, but ended up keeping it. My test was at the very high end of abnormal, 1% higher ejection fraction and I would have been “normal”.

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      • E. Milo says:

        I can’t believe my online friends diagnosed my problem. We’re all doctors, in our own way. I think you’re both right about the gallbladder. Thank you for commenting! I guess I’ll have to go to the doctor tomorrow. Any advice to get some sleep tonight and calm down the pain? Every time it stabs, I’ll wake up… I’m so scared of another sleepless night. 😦

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      • Jackie says:

        I don’t have much advice you probably haven’t seen if you googled. It seems most people are triggered by large meals and/or fatty food. Mine never was– it was about movement and position. My pain started on the left side then eventually went to the right and that is when they found the gallbladder issue. I think digestive enzymes (I like Source Naturals Daily Digestive) helped a lot. Maybe they took some of the burden off of my gallbladder?

        I always like a heating pad when I’m in pain even if it doesn’t fix the pain. I figure my muscle tense up due to pain, so the heat at least helps relax those. Do you have any big guns medication-wise you could whip out for the night? For me, not much is worth not getting enough sleep over because of how sick it makes me. I will take strong pain meds or Xanax when absolutely necessary rather than suffer from no sleep.

        My doctor gave me Reglan which helped quite a bit. He said he gives to patients who don’t have absolutely terrible gallbladder function and are wanting to avoid gallbladder surgery and has had great success. I wish I could fly you some this second! Be aware long term Reglan use can cause tardive dyskinesia. I know I’m getting ahead of myself, but just stuff to know!

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      • E. Milo says:

        Truthfully, I haven’t really googled anything except the symptoms on the Mayo website. I have been flat on my back all day – much more so from not sleeping than from the pain. I know you can relate to that!

        I am so grateful that you answered. I am so excited when smart, obsessive researchers share their wealth of knowledge. 😉

        Last night I ate a HUGE stir fry – a much bigger meal than I normally eat and I was joking all night about how big my stomach was. I kept saying, ooof, I do much better with little meals often… I cannot believe I triggered this!!! It’s definitely been worse today after I’ve eaten, so I skipped dinner and I’m starving.

        I didn’t want to use my hot water bottle or heating pad all day because , when I was researching appendixes, they said heat can cause it to burst. So crazy.

        I can’t take any painkillers. It’s ridiculous – my drug drawer has all the big-guns and they all make it difficult for me to breathe, so I don’t touch them. And I have no Xanax. I’m going to take a Tylenol and 1/4 unisom (anymore and I feel I’ll), but I know this won’t mask the pain, being such a light sleeper. It’s like someone is moving a red hot knitting needle inside me every few minutes.

        I’ll ask the doctor tomorrow about Reglan. Thank you for the tip. Oh joy, another drug to be afraid of!

        Ok, I’ll stop venting now. Thank you so much for being there, it means more than you know!!

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    • E. Milo says:

      Oh my god, my gallbladder! What did you do to calm it? I’m so scared of not sleeping again. 😦

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  3. Jackie says:

    I’m sorry you had a wonderful day and now you’re having an awful day. I enjoy my “good” days, but they do make the “bad” days much worse in comparison… especially without enough sleep. 😦 I’m thinking of you!

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  4. Zuz says:

    Sending you love and kisses and willing the pain away for you❤

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  5. So sorry to hear you are in such pain, I hate the stabbing pains and use hot water bottles when i get bad, not sure if it will help you but worth a try maybe? I lie on my back and place the bottle across the pain area, (i fill the bottle with a small bit of cold water so its not completly scorching and put it over a layer of clothing so not to burn me! Thanks for posting all the advice re surgery. In my recent visit to the doc we talked about my teeth as my gums were inflamed and i worried a wisdom tooth was popping up. Thankfully the gums are now fine and inflamed gums happens to me a lot but the conversation led me down the path of no nos with ME patients, it was the first time I heard things such as “anaesthisa will leave you worse for a few weeks or months” “avoid at all costs” “have consultatation with anaesthesit before any procedure” “important they know of your condition” and so on, it was a reminder of all things ME and how something relatively simple such as pulling a tooth can be so complicate for an ME patient, bizarre. I hope the pain subsides and you get the gold dust of sleep. xx

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  6. Curiosity says:

    I was going to suggest gallbladder too.

    I’m not 100% certain that’s what it is, but I get that sudden super intense stabbing pain in my upper right abdomen too, and gallbladder is what’s been suggested to me so far. I also sometimes get super sudden onset nausea a while after I start eating.

    For me, cutting out too much fat or meat in the evening, and too much meat in general, has helped immensely. It still goes off every now and then, but usually I can tie it to what I’m eating. Some days it seems able to tolerate more or less than others.

    I used to use digestive enzymes, but it now seems likely they were a contributing factor in my super easy bruising and broken capillaries, so I’ve stopped. Sometimes lemon juice seems to help me. Since it’s not too constant anymore, I’m hoping maybe I can keep mine under control without having to consider surgery.

    Hope yours calms down for you soon.

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  7. rachelmeeks says:

    This made my brain hurt. I can only imagine how you feel!

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  8. […] and Z. gave me a scooter: my ticket to some freedom. September: My mother and brother, T. visited; abdominal pain started; husband’s family visited; celebrated 15th anniversary. October: Brother A. visited […]

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