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“Walking on legos” is such a great description - I’ve felt that pain many times! I have EDS - so everything hurts all the time and you learn to ignore a lot of pain.

Once - the walking on LEGO’s feeling was extra intense and extremely difficult to bear. After a few days of increased swelling and horrendous pain I finally went to the doctor and was diagnosed with “protein losing enteropathy”. The body is an incredible thing - it never would have occurred to me that low albumin and protein could cause that much swelling and pain!

Thank you for sharing your struggles with us - that visibility is so important!

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Oh my gosh. That sounds awful. I think mine is nerve-related, but not sure. Tests don't really find anything, so each doctor points at the other one, kind of like that Spiderman meme.

I will occasionally post struggles here, but not too often. I don't want to become the complainer in chief.

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My heart hurts for you. I have had chronic pain and migraines for 41 years. Yes, it all started after jaw surgery to correct my bite. This was after five years of headgear and braces. I was 15. I have run the gamut of Drs gaslighting, blaming it on my being an “emotional teenager wanting to avoid doing certain things”, to out right saying what I was feeling wasn’t possible. Thankfully my parents saw and believed me and 6 surgeries later on my jaw ( my jaw joints looked like a 90 year olds not a nineteen year olds per my surgeon) I was left with chronic pain, some nerve damage and continued migraines ,which have altered over the years. I am down to just 8 - 9 a month and they mostly not stick your head in the toilet kind which my jaw appreciates. Sorry for that tangent, just wanted you to understand I can empathize. But barometric pressure changes are my worst trigger for everything + stress + … is like Jenga when the wall comes tumbling down as you know well.

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+ 4.5 years ago loosing my supportive husband to multiple myeloma has me trying to right my ship on this journey called life.

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I'm sorry for your loss and your pain. I'm not sure I could find the strength to carry on if I lost my husband. He has been everything to me for the past twenty years.

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To be honest I didn’t ever think I could, but not was not an option. I am left to say his name and he was a fighter with such a positive attitude in spite of all he went through. At the age of 26 he was told he had some type of degenerative neuromuscular disease that would cause him to become a quadriplegic in 20 years , caused by Agent Orange. It wasn’t a perfect diagnosis but they were calling it muscular dystrophy ( none in his family and later genetic testing indicated it wasn’t a match but they did no further testing). He was walking with a cane when we met that magical year 20. James was headstrong and refused to use a wheelchair for anything other than very long distances. When he fell shattering his leg, it triggered a trip to the Rheumatologist, who sent him to a hematologist. The hematologist said your blood proteins looked off and he needed to do a

bone biopsy to confirm a blood cancer diagnosis. When the results came back positive for the precursor to bone cancer (Agent Orange) James told me it was going to be ok. Over the next few years as we monitored his blood levels, he became a functioning quadriplegic. I got to marry my soulmate who empathized with my medical struggles. We were married for 18.5 years before his battle with a secondary aggressive form of multiple myeloma was lost. If nothing else, have those difficult discussions with your husband now, before they are necessary, do the unpleasant task of legal paperwork medical powers of Attorney, regular powers of attorney for bank accounts etc, do your wills. Do letters explaining why you left specific things to people. If you have children and pets make plans for people to take care of them in case the worst happens. I read so many widow/widowers regret not doing these things when they weren’t in crisis. Make it one less trauma to go through. Gentle hugs to you and your nurse pupper.

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I'm so sorry you have had to go through that, but I am glad you had each other for the time you did. I've tried to have such conversations with my husband, but he is not receptive. Eventually, I will wear him down.

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I have saved this to come back to it. This is an interest of mine and legos?

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But did you sing the title to this post? Legos instead of sunshine?

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Oct 13Liked by Dawn Levitt

I'm so sorry your not feeling well Dawn! Praying that this improves quickly. Gidget is a real trooper!!

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Thank you for your well wishes. Gidget takes her job very seriously.

This major rain system moving across Michigan right now probably has something to do with my body aches. Plus being away from home for a week caused some poor food choices instead of my usual clean eating. That combination is a one-two punch.

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Oof. Those dismissive doctors make me angry and also weirdly sympathetic - what must their training and work culture be like for them to behave like this?

My rheumatologist dismissed me when the drugs available weren’t tolerable because of side effects but he did it kindly, explaining (with regret) he had limited pharmacological options and didn’t want to waste my money, energy and time and that if there was a new drug he will email or if I develop a new issue to come back and he’ll happily see me anytime.

I hope you find useful answers and don’t have to trade longevity for function ❤️‍🩹

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I can understand why the second rheumatologist turned me away. With a six month wait for an appointment, she did not need a patient who could not benefit from seeing her. The first one did prescribe physical therapy for my IT band issue, and it did resolve that problem. So he wasn't inept, he just had a methodical approach that would take two years to get through all my issues.

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So glad you shared this! I can understand why the resistance now though when writing a piece like this from a place of so much pain.

It took me 20 years to get diagnosed with migraine - even though I told doctors from the off migraine was what it was. I was gaslighted and dismissed every time. By the time I was diagnosed I was disabled by the illness and told “yes, it’s migraine”. After 20 years of telling them that.

I also took a diary/relevant information as constantly advised to. No notice was taken of it. My letter came back full of errors from beginning to end. Commenting on my emotional state first as I have come to realise is first port of call when dealing with a woman (I learnt to suppress from a young age so it was complimentary - a major part in my illness I later discovered).

At this time I believed the “specialist” was there to help me get to the root cause. Fortunately, I realised my health was only further deteriorating under their care and experienced a kind of awakening at the same time of waking up to disability.

I began to realise how severe and serious it was (always had been) and learnt to drown out the noise (of everyone - well meaning and otherwise) and tune into my own inner knowing. I knew there were changes I could make to support my health whilst I got to root cause.

I broke the chronic pain cycle quickly only to be left with chronic fatigue and still 6 days a month bedbound due to severe and agonising pain (plus a further myriad of symptoms).

After my follow up apt where I told them what I’d achieved on my own and discovered little to no interest in how I’d done it I didn’t go back. I haven’t seen a medical professional in person since. Did all my own research, implemented changes based on what my body was communicating to me. Which included rebalancing my hormones (self taught).

It’s been a long road and I now live in a static caravan without any central heating 😆 so I could keep on prioritising my health like no other. 6 years on and I only live with mild pain, symptoms are only few. (I’ve never experienced mild pain in my entire adult life - if I had I wouldn’t have known it was pain it would’ve felt like nothing).

Understanding the healthcare service isn’t healthcare but disease care helps. We are so fortunate to have it. Its primary function is to save lives and treat disease. Whether it treats disease effectively or not is for us to work out it would seem.

It is not there to create health. I believe creating health is something we can learn to do ourselves.

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Twenty years? That sounds horrible. I had a little over a decade of migraines. The doctors identified it immediately, but there was nothing they could do to alleviate the issue when they were also prescribing the drugs that gave them to me. I'm so happy to be migraine free. Even on the worst days of full-body pain, it's not as bad as a migraine.

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So frustrating that we have to advocate so hard for our health! I'm lucky I have had such good PCPs which has helped my health journey. I'm facing a diagnosis of MS, which the neurologist is just pushing off, despite the numerous symptoms that would be explained by an MS diagnosis. The worst story though is my sister-in-law. Thankfully she's still with us. But she was suffering from increasingly severe headaches and all of a sudden vomiting, which she had never experienced before. She has recently been in a car accident, so I was worried about a blood clot or brain bleed, as was her sister. So we pushed her to go to the doctor. Her doctor laughed and said "it's not like you have a brain tumour" but thankfully ordered the scan anyway. Turns out she has a brain tumour.

Good luck and I hope the pain improves for you soon!

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Oh my, I'm sorry about the MS diagnosis. My mother was diagnosed with that, but it was the late 1970's, so it was a guess by her doctor. They didn't have the tests they do now.

I hope your sister is doing well and I also hope her doctor apologize after the scan showed that she did, indeed, have a brain tumor. What a jerk!

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I want to smack those dismissive docs upside their heard with a heavy wet cod fish, but I probably couldn't lift a heavy enough fish do as much damage they deserve. The medical system is a fetid morass, wonderful when it works, but rendered inhumane way too often. I've fired a doc that wanted to stick to one symptom, as if choosing a prize from a box. And YOU get one diagnostic prize today! Argh.

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I couldn't understand the one symptom per customer idea. When I tried to tell him that I believed I had some kind of underlying condition, he became angry and told me there was no silver bullet.

Between the two of them, I was really demoralized and stopped trying.

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Grrrrrrrrrrr.....I think it may have something to do with insurance or whatever group they work for or....but it's unhealthy!

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Two thoughts on your experience with physicians: report their insensitivity and hubris to the hospitals and clinics where they are employed and then ask to see their Nurse Practitioner. Many practices have one or more on staff and they are much more likely to take you seriously and listen to the whole story. The docs use the nurses to protect themselves from “difficult”patients like you. In reality, the nurses will see a human being who is trying to live with a terrible situation and try to actually help. I suppose there are some bad NPs too, but fewer. I wish you all the best. P.S. I hated Cymbalta. I felt like a slug after about a week and quit after two weeks. It didn’t help the pain either.

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I've had my share of dismissive PA's as well.

Cymbalta made me feel like a zombie. I couldn't get off the couch and felt disconnected from my body.

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I’m sorry to hear that. As a nurse myself, I always tried. What you describe just makes me so angry at the medical system in this country. I’m sick of the greed and disrespect. I still wish you well.

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I've also had many excellent doctors as I've gone through my heart transplant process. Unfortunately, this mystery pain has been a tedious process to diagnose.

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Sorry to hear about all your pain and that you can’t take the NSAIDs. Sorry that you have dealt with some fairly unsympathetic docs, too. Keep trying. There are some who will listen. This may sound silly, but have you tried cherry juice? It’s a good anti-inflammatory and worth a try. Tastes great, too.

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I have tried tart cherry juice and also tumeric. Neither one did anything for me.

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Sorry. Those do seem to help for me. How about acupuncture? Had it once and it worked for a bad shoulder.

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The pain management specialist I saw for migraines offered acupuncture, but my insurance didn't cover it so I declined. Massage with acupressure has been very helpful though,

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Holy shit, Dawn, what a nightmare. These stories are far too common, and I fear they will increase as our bodies respond to the presence of microplastics and other foreign invaders from our environment. Medical students need better training to deal with this. I hope you somehow get relief.

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It's intermittent with me, so at least I don't have to live in constant pain. I know weather fluctuations can trigger a flare.

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How terrible. How terribly you’re treated while trying to do as you’re “supposed” to. So incredibly frustrating and disheartening.

I have all original parts…well, no, some have been removed, but none replaced. When you said how your joints, bones and skin hurt I yelled YES!!!!! Also feet!!! Also plantar fasciitis! YES! Just try to go to sleep and stay asleep with all that going on.

I have had 3 days so far and I just gave up today and have gone to bed at 3pm.

I have primary hyperparathyroid issues and I’m scheduled for surgery Nov 1. Meantime, nothing doing for all these symptoms. It took a zillion specialists and over 2 years to get to this, even though my labs showed it loudly.

We will see how much of this is gone post surgery, and if it’s not, my PCP wants to investigate some other things LIKE MCAS. She thinks I’ve got it, but we won’t know to what degree till this is gone.

I only really share this here. My dietitian knows, as does my LCSW.

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Oh my goodness! I've heard of MCAS and it sounds quite difficult to manage. I've never heard of the other one so I'm off to Google.

I hope your upcoming surgery resolves some of your problems. ♥️

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🥲❤️🙏🦋 doctors with no empathy are the worst! Once I was depressed and the doctor said you need to lose weight just eat less and exercise more. Not helpful.🙀🙀🙀

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That's my favorite! A cardiologist gave me that medical advice when I was in heart failure and my weight gain was fluid retention.

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These stories are absolutely heartbreaking. ❤️‍🩹

Reading through your story about the different doctors you’ve had to deal with, brings me right back to a year and a half ago. My son didn’t think I was going to make it. I kind of hoped I wouldn’t.

I haven’t had a heart transplant, thank God. But chronic pain and gastrointestinal abdominal pain has led to too many specialists visits much like yours. And everyone had different treatment plans.

Two colonoscopies, two endoscopies, many X-rays, cat scans, ultrasounds, sonograms, and the list goes on.

I was hospitalized for a half month and then released to a physical rehab facility for another half month.

I’ve had 3 major back surgeries, with the last one, the doctor pretty much put the Starship Enterprise in my back.

The pain is never ending. Thankfully I am retired now and I can go at my own pace. That helped a lot.

I don’t talk about it, but it did feel good to write it and share with other ladies who can understand it.

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Thanks, Dawn. Yes, I do find some relief by taking Flexeril for back spasms and being sedentary. But I am so OCD that I can’t be sedentary for long. I moved to a seniors apartment building in January. All of my stuff had been in a storage unit for almost two years while I was living with my son and family while waiting for my name to come up at the seniors apartment.

Recently, my son and daughter-in-law cleaned out my storage unit and brought many many boxes for me to go through, so it’s kind of hard to be sedentary and OCD. 😆

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Muscle relaxers are a miracle drug. Usually Tylenol and a muscle relaxer knocks out most of the pain. Writing is a pretty sedentary activity. But I need to make sure I move to avoid having everything lock up like the tinman.

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I'm sorry you've had to deal with the conundrum of modern medicine. No two doctors can agree on one treatment it seems. Have you been able to find some form of relief? I hope you feel better today than you did, and better tomorrow than today!

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Oct 12Liked by Dawn Levitt

I’m so sorry! I have chronic illnesses too, and problems with medications, but this sounds so difficult. My heart is with you.

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It is a pain to live with pain, but as I like to say, it beats the alternative - meaning not living at all.

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