Sick Humor: The top ten worst suggestions commonly given to someone with a chronic illness


Sometimes you just gotta have a sense of humor!

The top ten worst suggestions commonly given to someone with a chronic illness:
1)Have you tried holistic options? (many. I’ll bring it back up with my doctor on my next visit, thanks.)
2) Could it be your stress? (My opinion is, it is my illness. I’ll bring it up with my doctor though, thanks.)
3) Could it have to do with the altitude? (I’ll bring it up with my doctor…thanks.)
4) I read in {insert any generic magazine here} about a new medication. Have you heard about it? (I was on it when it came out 17 years ago. but I’ll bring it up with my doctor. thank you.)
5) Have you thought about being in a trial study? (I’ll ask my doctor. thanks?)
6) WOW. If I were you, I don’t know what I would do. I might just kill myself. (Thanks?)
7) Have they found what is causing the problem? (no. my doctor is an idiot. I’ll remind him, thanks!)
8) Have you tried hypnosis? (I’m still sick, but when the phone rings I bark like a dog.)
9) Have you googled your illness? (….no! thanks!)
10 Have you ever thought you were getting sick because you haven’t wrapped your house in aluminum foil because, you know, the aliens have been bugging our houses for the past 30 years and in some cases, making people really sick. I read on…..gee I lost the web site. but it’s true! I heard it from Sally’s cousin’s sister-in- law. And then every time you use deodorant you would think you would be warding off these bugging rays, but it still makes it worse, so you are not being pro-active to your health by wearing that deodorant. I can’t believe you! If you wanted to get better you would stop wearing deodorant..(voice gets fainter and fainter the further you just walk away.) THANKS!!!!!!!!!!
Article written by Amy-Beth Maran , © 2007

  • Bohemia mya

    lapak 303
    domino 88

  • Patricia Salem

    My list:

    1) If you would just exercise more…
    2) If you would just lose weight…
    3) If you would just stop eating XYZ…
    4) If you would just get proper health insurance…
    5) If you would just get a “real” job and get out of the house…
    6) If you would just realize everyone has challenges, and you’re not so special…
    7) If you would just stop being so easy on yourself…
    8) If you would just get rid of those dogs…
    9) If you would just move back home…
    10) If you would just stop thinking negative thoughts and manifesting all your bad stuff…

  • Sheila Patros

    So many people also suggest exercise! They think it will cure anything. I wish it did. My stepdaughter recently alluded to the fact my dog (a darling little yorkie) needs more exercise! Believe it or not we actually get along pretty well. She’s only 4 years older than me and has unbelievable amounts of energy. She has no understanding of depression or fibro! Oh well, she is my husband’s daughter.

  • But even when it IS “all in your head,” that’s not exactly a scientific diagnosis — I’ve suffered clinical depression, to greater or lesser degree, my entire life — I think they now call it “major depressive disorder.” Gee, ya think? I’ve finally accepted that this disorder will never go away, but that I must stay on guard for it every day. When it’s in a mild state, then yes, a bit of exercise can help a great deal, keeping a positive attitude, etc. By keeping that sort of guard up, i can mostly prevent it from sliding into “acute” territory, where I just want to die and get it over with. And yet I still hear the brainless “Chin up! Get over it!” sort of crap — I wonder if diabetics hear that? I know that asthmatics generally don’t, since I have asthma myself, but I do know that non-asthmatics don’t really get what a real asthma attack feels like. I once told my husband, “put a plastic bag over your head and seal it, then make one tiny perforation — THAT’s what it feels like!”

  • Trisha Brasher

    Elizabeth Becky Young…I can very much sympathize with the frustration that you feel about having trouble getting on disability! Almost everyone gets denied when you first apply, you almost always have to appeal, evrn with clear cut medical records. I think Social Security does this on purpose, hoping that people will just give up.

    I do want to ask you a couple questions if you don’t mind, to clarify some of the info you posted. Have you been applying for Social Security Disability Insurance (SSDI) thru Social Security? I ask because you mentioned about the “state” saving money etc…but Social Security is a Federal program. The rules should be the same in each state, and with SSDI, they base the amount you get on how much you worked and paid into the SS system thru the FICA withheld from paychecks (or paid in by you if self employed).

    Some people confuse SSDI (which depends on previous work) with SSI, which is not really a Disability program, it is money given to people who are physically or mentally unable to work and haven’t paid into Social Security and are poor (no more than $2000 in money)

    Now you may be talking about some kind of state disability program thru a previous employer? But it’s unlikely they would allow you to apply for that long (15 years).

    I’m just trying to give you correct info that may help you and others with understanding the different programs, who runs them, and the requirements. I know this info by personal experience, as I was an RN who became disabled under SSDI (since I paid into social security for over 20 years) and my brother, who has Aspergers and other mental health issues, and has never worked and always lived with our mom- he gets SSI from the government-about $735 in our state). Many times, the Federal SSI program is linked to state-run Medicaid programs to provide medical care.

    It can be very confusing! I wish you the very best in trying to get some kind of help….but if you have not worked very much and paid enough FICA, you would not be eligible for SSDI. And would be wasting your time and money in trying to apply. I don’t know your specific circumstances, so I’m just speaking in general. You could contact your local Social Security office and make an appointment and they could tell you if you have paid in enough to qualify for SSDI. And maybe advise you how to proceed.

  • Elizabeth Becky Young

    i agree. everyone is forgetting about – quality of life! If you are living a life of pure painful agony…day in, day out… you are in HELL! Suicides go WAY up when people are living in pain. When you’d rather be dead, than live thru one more day of agony… there’s a problem.

  • Elizabeth Becky Young

    yeah, its time for a new doctor. and i’ve also had endometriosis and had a hysterectomy. for me, the hysterectomy was the best thing i could have done! i was bleeding so heavily, i could not get off the toilet. and it lasted for 2 weeks straight. my period came every 2 weeks, after the 2 weeks of bleeding. it was awful! i had to wear diapers it was so bad! i actually called the ER and asked them if i was hemmorhaging to death! endometriosis can really mess you up!
    Now, as for the doctor…if he is being mean and threatening… you need to ditch him asap! THAT is sadistic! And completely wrong! If he is not helping… then he is hurting. And that behavior is unacceptable in a doctor. There are much better docs out there. Dont stay in a situation that makes you suffer, more than you already are.

  • Elizabeth Becky Young

    I live in a state where they’ve made it almost impossible for people who have expensive chronic illnesses and cancer to get disability. They say they are saving the state money by making it harder to get… at the expense of sick people! (But they don’t talk about, or admit, that!) People who don’t need disability… They get it! Immediately. Those who are really sick, spend YEARS trying to get it. That way, the state can say, but we have all these people on the disability roles…and save money at the same time. And terminal cancer patients? Yeah, they die waiting for it. And then, just to make sure, you absolutely know you’ve been slapped in the face… the day of your funeral… there will be an “approval letter” in the mailbox. I’ve been trying to get disability for about 15 years now. Meanwhile, i am unable to work, live on zero income, and have lost everything, my jobs, my home, my possessions, my car, everything. And the state is telling me i will not be approved, unless i get specialist testing done… and I HAVE TO PAY FOR IT. On zero income. Thousands, upon thousands, of dollars. And they say, i have to come up with it somehow, or they will not approve me. And i’m sure, that even when that testing is done, i will probably not be approved, without more years & years of denials. Just to save some more money for the state. And the lawyers? They’re saying THEY need those specialist reports too, or else they will not represent me. The hell with the attorneys fighting the complete unfairness of this all! Oh hell no! They don’t want to have to work! Did you EVER think, that you could literally be, TOO POOR, to get the disability you desperately needed? Well, That day is here.

  • lsallen

    OMG have you looked for another job?

  • lsallen

    Unfortunately, there is no exam / license requirement for owning a mouth that speaks.

  • lsallen

    Good for you. Keep on fightin’. People don’t generally know about this. People in general have such a strong need to believe that the persons in “authority” are competent, good and honest, that they will choose to believe that almost regardless of the behavior and attitude of those persons. So the persons in “authority” literally get away with murder sometimes. As long as they look good, nobody questions.


    And water and fruit and vegetables. This guy is smart but refuses to do anything.
    White bread and meat! Ha!! He wouldn’t touch avocados or walnuts, the good fats. What a weirdo;)

  • Chris Wynter

    Ketogenic diet.

  • Chris Wynter

    Meat doesn’t cause constipation; lack of fat does.

  • Chris Wynter

    No you don’t, you need to follow a Ketogenic diet.

  • Geoff

    G’day tippi,? Three crushed vertebrate and a lot of wear and tear from physical labour all my life =excruciating agony “most” of the time!!
    Why don’t you try this or that “your not doing yourself any favours”!!
    Christ that gives me the shits!
    I’m hearing you.

  • UKNown

    What person goes after another one that is sick and trying to make thing for sick people that’s what spoon theory is doing they what to flame the word spoon Which if your looking to help people I doesn’t matter

  • Tippi Longstocking

    I have a family friend staying with me for a couple weeks. He’s from South America, is a professional boxer (the top in his country) and a personal trainer. It’s only taken him approximately 4 days to start nicely picking on me about how I don’t exercise enough, in the right way, and that is what is making my back and stuff hurt. No matter how I explain it to him, he doesn’t understand I have 2 herniated disks in my neck and 3 in my lower spine, plus all manner of bone spurs growing in the nerve openings of my vertebrae. I HAVE gained quite a bit of weight, but I also can not walk much further than from my house to my driveway, and that is more what he is picking at than anything. It’s not only a blow to my ego, but it’s generally disheartening as well, particularly considering that exercise has been proven to only be 30% effective in the battle against weight loss. So, sure. Let me put myself through probably excruciating pain, so that I’m not such a fatty. I don’t understand how so many people can’t just take my word for it. Do they think I LIKE being like this? *angry* *hurt*

  • Jessica Pitingolo

    haha, touche. that’s a good one. i wish i had it in my arsenal when going through the bulk of my fight for treatment when i was in one of those revolving automatic doors doctor to doctor, er to er being asked “have you *actually* talked to a psychiatrist about these symptoms?” or upon being honest that a combination of questionable prescribing and my own body’s inner workings led to a dependency on my pain medication (a hospitalization was also involved in which i was stopped by the attending physician cold turkey after 3+ years on my (high) dose for no other reason at that time than “i cant imagine someone your age would need this” resulting in massive physical and mental withdrawal and… on. ) that has been in remission and recovery for a sustained period and pain is currently managed through a methadone program (my choice in this stage of recovery as opposed to monthly prescriptions) having anything from a presentation of discharge papers within minutes to a doctor asking directly “so what exactly from you supposed laundry list of symptoms would you like to claim is your supposed problem?” to pep talks about how “the drugs are still working through your circulatory system(…just…no…not even…like… within the realm of this planet) to if i wasnt alone a sudden shift to paying complete attention to the other person even if it was just my case manager who had zero medical history and would explain to them that ive been there several times in the past and should know they cant do anything for my “condition” and that i need to find help elsewhere that is related to my “actual problem”.

    once i was actually admitted following an inexplicable seizure. well, the first hospital sent me home unable to ambulate or see afterwards. it took my primary 24 hours to call me back and for me to have another episode while on the phone to tell me to go to a different facility that specialized in stroke care. i was admitted and the neuro team deemed i needed rehab from the episode due to gait problems unrelated to my neuropathy from previous spine injury. a pa called me out unfiltered to my face even with medical documentation and multiple doctors backing it up and kept me for further evaluation from PT. i heard her talking to PT outside my door to disregard his conclusions and that i was “faking it” and to recommend immediate discharge.

    *finally* things started coming together…. by mistake. i was referred to a neurologist and the practice i wanted was a 3+ month wait (another story: i had made an appointment with them at the beginning of that year, 2016.the office gave me case a run around and kept switching which specialist was most appropriate, thus which office. days before the above seizure i had been called and told my appointment which was for the next week was being cancelled, the doctor it was with did not fit my needs. after the same run around i was placed with the *original* doctor from when i called months before and althrough i would be waiting over 8 months and it was in their error they would not see me until OCTOBER.

    i called my old neuro, which was ok for basics. i figured i could use them as a springboard to at least get any testing scheduled and out of the way….
    you folks know what it’s like..sitting…waiting…wondering…
    the unknown.
    i got in within 2 days, lol.
    i started with a reintroduction and the doctor referred to our old notes, i used to go for migraines and “spells”which had progressed to anything from said “spell” to what appeared to be a grand mal seizure. frequency of the “spells” went from maybe 6 a year to 6+ a month.
    he assured me he was going to help me when i started explaining how distressed i was and frustrated to be ignored when it came to physical illness, i began explaining and i could see his demeanor just MELT.
    i was still listing symptoms when he cut me off and said “so what exactly symptoms are you deciding to pick and claim to be your problem” akin to that er visit a few months before. i was dumbstruck and he continued “because those symptoms do NOT correspond to anything particular other than maybe vague matches and- that is just not the case. You have a primary doctor and if these symptoms existed… physically….action would have been taken LONG AGO. anyways- i have to order a few tests for my own purposes”

    the appointment ended with another grilling of current and past psychiatric care and if my complaints and trips to the doctor and hospital were known in their entirety.


    im not trying to grab for sympathy or victimize myself, this is just a glance of a prolonged period that i was placed in voicing my medical conditions to deaf ears. ok,not so much deaf but more like professionals who had already decided the conclusion of an assessment before even evaluating the patient based on societies’ and their own stigmas… and perhaps ignorance in certain areas of medicine.

    i really didnt realize throughout much of this the additional damage that these circumstances were having on my health,mostly my emotional well being, but also my physical. there were times i was so downtrodden that i just cancelled appointments with my primary instead of going to repeat my problems, even if new, because of what had been going on. i began questioning my observations of my health, my symptoms, my perception of pain and malaise, even seemingly undeniable issues to bring forth I questioned if I was just perhaps mistaken: such as in that period I had gained 80 pounds. I am a roux en y gastric bypass recipient who struggled with bulimia at the time,NOT TO FORGET i was an IV heroin addict still (which i was open about and in treatment, updating my doctors, NEVER violating his prescribing methods or attempting to obtain narcotics from him).To gain that much weight in such a short period was a red flag irregardless without those, but with there was absolutely no way that should have been feasible.I also had been telling him for months of increased chronic fatigue and hypersomnia in which I slept over 20 hours a day.

    Yet I still questioned myself, I thought maybe I was delusional and had body dysmorphia,I mean why would a doctor ignore this? Obviously it was me.

    Except it wasn’t.

    Before things started getting better they got a lot worse. I found out (through another crazy set of circumstances that should have never occurred) that I have SLE (Lupus) and that many of my “idiosyncracies” are actually related to my immune system spazzing out. Coupled with a thyroid problem a neurologist ended up discovering that was so abnormal my levels were literally unable to be read for several follow ups. Initially I literally should have been in a coma at that point because my primary failed to do routine checks and pick up on the major indicators that something was wrong. It’s nothing near normal still and I had to piece together myself from his lab work that I have hashimotos, which was confirmed by my rheumotologist. There are other underlying auto immune issues at work along with a slew of other health concerns.

    I’m doing my best to keep my health in order because really and truly no one cares about you like YOU. Even your practioners who study and are paid mega $$ to at least follow the most routine dots. I stay informed and educated on as much as I can pertaining to anything relating to a diagnosis, set of symptoms, body system in plight and so forth. I used to be knowledgeable and curious on a level more akin to just general interest but now I know it can be literally life or death. I stay up on all my medication, how they interact, other options, and keep a calendar on how long I’ve been on them so I know if/when to question other options for the auto immune shit. Oh, and I’ve managed to keep myself out of dope and have been clean for nearly a full year with optimism of a bright, addiction free life ahead of me. I have enough fucking health concerns without it and worrying what the hell I’m putting in my body and if I’m going to get a flare from it, heh.

    One thing this has given me is confidence. I’ve struggled with it for my life and have had some major mental health hurdles in the past as well. I’ve learned to deal and cope with the bulk of my diagnoses there using behavior modification utilizating dbt and remaining mindful. My mental health plight is a whole other episode of bullshit that I won’t get into here but after major misdiagnoses and improper medication multiplying the complexity of my illness I luckily found a doctor who was open minded and tried a different approach to my treatment. Because of him I was taken down to ONE medication (at times I was on EIGHT) for OCD which was actually the cause of these terrible suicidal ideations I hadn’t been able to control (I had been accused of everything from making it up to attention seeking by doctors) and was on the short list to go to a LONG TERM STATE HOSPITAL. so my life was literally saved.
    today my depression is officially “in remission” although my anxiety and ocd have their place in my life. I am not 100% medication free from psychiatric drugs at this time although I realize this will probably not last forever.

    holy crap i wrote a book.

  • Kyrie McColgan

    Sorry to hear about that but I am glad to hear you finally have a diagnosis and are getting help. I was misdiagnosed for years and given meds that made me sick and made my situation worse. I hope that you do not have to suffer any more quacks.

  • Kyrie McColgan

    I’ve been told for years about how it is all about eating the right food, exercising and taking multiple strange quack herbs and yoga and new age psychic surgeries and if I would just stop being so negative because energy fields…blah, blah, blah. I was constantly trying to deal with weight and food and exercise when the New age came into vogue and farted all over actual medicine. I have no time and no patience for quacks who have spent their time trying to delay me or anyone else who is truly suffering from getting the care and help they need. This goes for all those churches out there who are pushing Jesus healing weekends because if you just believe in Jesus you won’t be sick nonsense as well. Just stop, right now. I have been disabled all my life. You cannot stop autism by ending vaccines, cure my seizures with special granola or make chronic depression and pain go away by losing weight or running a marathon. I truly hope that those of you who are not diagnosed yet are able to connect with the right doctors and get approval for SSDI.

  • Chloe Martin

    I have dysautonomia also.

  • woodwardbarb

    time for u to get a new dr.

  • Tania Pflughoeft Behselich

    I was told by an MD I was reincarnated and in my previous life that I may not have understood suffering so today in this life it is my lesson and journey. I had been possibly an awful person in my previous life. Um, that was years ago and now it turns out that I have Todd’s Paralysis meaning I may have seizures all of these years and I’ve bee. Fighting it is neurological. This MD CHOSE not to investigate any further years ago but had she done her work as a medical professoinal well, I may not have list everything prior to my diagnisis a week ago. Years and years of suffering.

  • Tania Pflughoeft Behselich

    I was told by an MD I was reincarnated and in my previous life that I may not have understood suffering so today in this life it is my lesson and journey. I had been possibly an awful person in my previous life. Um, eelk that was years ago and now it turns out that I have Todd’s Paralysis meaning I may have seizures. This MD CHOSE not to investigate any furtgmher years ago but had she done her work as a medical professoinal well, I may not have list everything prior to my diagnisis a week ago. Years and years of suffering.

  • Marcia Lester

    You have to stop eating gluten. I have been tested and showed no gluten problem. I have stopped gluten, no difference. I have multiple autoimmune diseases, allergies, and something called CVID and another thing called dysautonomia. I just need new DNA.


    Thanks Trisha, pretty much status quo. Have Hashimotos and recently found out my thyroid is almost shut down after a scan. You take care.

  • Trisha Brasher

    Are you now OK?? My heart goes out to you when I just read your post and am astounded that no doctor ordered a simple head CT after the double vision started, at least! I had migraines since I was 8 years old, which was before they had CT scans, and as soon as they were available, my doctor ordered one to double check.
    Do you live in a country with national health care (like Canada or UK) where they may not test as quickly as in the US? I don’t mean that to be offensive, I have friends in both places who have told me about long delays or not getting some treatment at all.
    Anyway, if you see this, please let me/us know how you are, did you get the brain tumor treated/removed? Just concerned!

  • Trisha Brasher

    It has been 3 months since your reply to my Lyme info post, just checking in to say hello and I hope and pray that you are progressing in your treatment.
    I agree, steroids of any kind are horrible for folks with Lyme infection!
    Since I posted, my LLMD started me on Biaxin (still keeping me on the herbal antimicrobial extracts Samento and Banderol) but I herxed SO horribly I thought I’d die…worst migraine EVER, violent vomiting (sorry for that awful word picture!) suicidal depression, insomnia, etc.
    So he did more tests and found I have 2 MORE genetic mutations that reduce my liver’s ability to detox by 70%!!!! No wonder I herx so easily and so badly! In addition to hemochromatosis, and iron-storage illness (under treatment) I also have MTHFR mutations and APOE mutations. So if you seem to be having trouble progressing have your doctor test for those.
    Just recently, my LLMD started me on a biofilm buster (Boluoke) and abx Doxycycline. He wanted me to start at half the usual dose….50mg 2/day instead of 100 but I’m so scared of herxing I started with 25mg once a day and am increasing by 25mg per week.
    If you want to keep in touch, email would be easier, mine is [email protected] just be sure to identify who you are and where we “met” as my memory is swiss cheese! Others can contact me as well if you have questions about Lyme.
    May our Lord bless you and help you heal! Trisha

  • I hope you’ve found a surgeon who will help you.
    My friend told me she fought hard for a couple years and searched through quite a couple doctors, but she finally got one to sit down and listen.
    (i forget how many year’s it’s been now, but she’s very happy with the end results of her hysterectomy)

    but yes. If a doc says, suck it up… they’re probably not the doc for you.
    that kind of pain is crippling.

    so, keep pushing for your needs. you’ll get there 🙂

  • MM_123

    My favorite is … are you taking supplements? Or… you’re probably over medicated. Have you tried homeopathics? Like I don’t lay in bed all day researching every nonprescription treatment I can think of.

  • Trisha Brasher

    Hi Lisa, sorry for not replying, I had my settings set to receive email notifications but I never have! Oh well….
    I found out in Nov 2015 that I actually have Lyme disease. I was misdiagnosed for 20 years with fibromyalgia. It’s common that a number of people who are diagnosed with fibromyalgia, chronic fatigue, MS, ALS, Parkinson’s, even Alzheimer’s (like Kris Kristofferson) actually have Lyme I infection. If you want to get tested, do it ONLY thru iGeniX labs in Palo Alto, California. You can Google them for contact info. You only need a Basic Lyme Panel, it was $275 when I had it done.
    Lyme is much more complicated and controversial than fibromyalgia, but at least treatment is possible, even at late stage, improvements and remission are possible even if it takes several years. You can get more info at and Stay away from CDC and IDSA info, they are outdated and inaccurate.
    I would recommend getting the Lyme testing, if you have symptoms like fibro. The symptoms are very similar, and many folks don’t remember a tick bite or rash. Don’t let a non-Lyme Literate doctor tell you “there is no Lyme in this part of US” because it is in all states (maybe not Alaska, not sure). And don’t get an ELISA screening test, they are inaccurate over 50% of the time (the test is negative but you really have Lyme). Most doctors are taught to do the ELISA first, but don’t know it’s so inaccurate!
    Best wishes to you, and may the Lord guide you, give you relief and answers.

  • Melinda Cullen Allen

    Painful email wasn’t it? Same thing here but from 2 very close friends then followed months later by my sisters interrogating me about diet and exercise. Her trainer had Fibro 20 years ago! Lord knows why I pay my doctor! I could have been fixed by diet and the gym years ago! Ugh I dislike sounding so bitter! Need to shake away this feeling. Hang in there honey. Your vibe attracts your tribe. You’ll find friends and support. xo


    I have it, too. Since ’06. No bite that I knew of. Deer tick are so tiny you can’t see them, can be hiding in hair or anywhere. Five months and five doctors later…a minor ER doc put the pieces together. Gave me one month abx then went out of state to LLMD six hour drive, no flights. Got a Western Blot test. Thought I was well after a year, went to foot doc for plantar fasciitis got a cortisone injection. Symptoms came back with a vengeance. NEVER TAKE Cortizone. No one told me. Back to LLMD. Spent thousands. In ’06 didn’t hear much about Lyme. It is everywhere. Know all about herxing:-/. Best wishes. Too bad insurance won’t cover. Sick again.


    My good friend/neighbor says on the phone “you sound better, want to go for a walk?”. Of course she doesn’t get it. Lyme, hashimotos, etc. and I get the you need to get out of the house more, also;-) Only us that do research and aren’t clueless do get it…. Oh, her husband is a retired doctor, who is sick all the time due to constipation from eating white bread and meat, very few liquids.

  • Carolyn

    My family tells me to “just get a hobby”., or that I need to get out of the house more.They also say that I “think about my self too much).I keep telling them that a hobby is not going to cure my chronic pain due to nerve damage or take away my other chronic health problems that led to my being on disability.

  • Trisha Brasher

    Hello! Luckily I was notified of your reply/questions, because I don’t routinely come to this site.
    I no longer work with Dr. Murphree, because about a month after my post above, on Oct 27, 2015, my test results came back and showed that I was “strongly positive for active, ongoing infection” with Lyme disease.
    So I don’t have personal experience to tell you about Dr Murphree past the initial testing and recommended supplements. He seemed thorough and knowledgeable.
    I had to pursue treatment for Lyme disease…I don’t know your symptoms and circumstances but I can give you general info. Lyme is caused by infection with the Borellia burgdorferi bacteria, a spirochete type that is stealthy and smart. This bacteria is transmitted through the bite of an infected tick, and is found all over the US and Canada (and worldwide) but is endemic is several areas: NE USA, Wisconsin/Minnesota, and N. Calif.
    After being bitten, about 50% of people get a characteristic rash at the bite site that is a red, round and expanding outward and clearing in the middle. The rashes can vary alot. And symptoms are flu-like illness, achy pains, fatigue, etc…at this “acute” early stage, many people can be cured with several weeks to a month+ of antibiotics. Opinions vary.
    In my case, I was never treated, so I have “late stage disseminated Lyme”. The term “chronic Lyme” is most accurately for people who are treated but the symptoms return later or never go away. There is a lot of medical and political controversy about Lyme at this point which you can read about online.
    Symptoms of late stage Lyme are very similar to fibromyalgia, chronic fatigue, and others like MS, ALS, Parkinson’s, even Alzheimer’s. Lyme is called “the great imitator” as it can mimic, and therefore be misdiagnosed for many other illnesses, esp FM and MS. Partly because Lyme can vary so much in how it attacks the body…. Some folks have more prominent psych symptoms (depression, anxiety, etc) some neuro (neuropathy, Bells palsy, memory loss, brain fog, tremors and twitching etc) some cardiac (arrhythmias) some arthritis (joint pain, all over pain) .
    I can’t remember if I finished symptoms for late stage Lyme: fatigue/exhaustion (can be severe and debilitating) widespread pain, esp joints like knees), mental/neuro/psych issues, and others you can look up.
    I had a classic Lyme rash in 1995, which was never tested for Lyme because I lived in AZ. The dermatologist was stumped. I then slowly developed “fibromyalgia” that got so severe I needed strong narcotics and pain mgmt Dr by 2005. I couldn’t work any more as an RN (ER) starting about 1998, partly pain and partly severe depression which no medicine helped (I now know it was made worse by the Lyme bacteria that was in my brain).
    I showed the pic of the rash from 1995 to Dr Murphree and he ordered the proper tests from the right lab. You see, testing is not all that accurate….the standard screening test (ELISA) is wrong over 50% of the time, meaning over half are told they don’t have Lyme when they really do. But the CDC and IDSA standards are wrong and outdated, you need to follow the ILADS guidelines, and the average Dr is taught the wrong info about Lyme.
    To get tested, which I recommend to anyone with FM, etc, just to be sure you don’t have Lyme which is usually treatable, you need to get tested by iGeneX lab in Palo Alto, Calif. You can google them for contact info. You need a Basic Lyme Panel, which includes the Western Blot IgG and IgM and the IFA. It is $275 (or was when I did it) and you need a doctor to sign the order. Worth every penny of the $275 plus whatever fee a local lab charges you to draw and spin the tube, mine charged $32.
    And you will need a LLMD (Lyme Literate Medical Dr) to interpret the results, usually, and if positive, a LLMD to treat you.
    I live in central AZ and the state Lyme support group could not give me a referral in Phoenix or anywhere in AZ. A friend has Lyme and was treated by a LLMD in S. Calif. So he is my Lyme doc, 450 miles away, but most Lyme sufferers have to travel to get good treatment. And most LLMDs are used to treating long distance…we went to his office initially, have monthly phone appts, (which of course I pay for) and we agreed to in-person appts every 6 months. Treatment will take 2 years or longer, and in my case has involved starting out with 2 antimicrobial herbal extracts. At the end of this month, he is adding an oral antibiotic, and after about a year I’ll probably have to do 4-6 months of IV antibiotics thru a PICC line. Lots of issues are involved…as you kill this bacteria, it releases toxins that your body (liver, lymph, etc) has to detox. If the toxins build up, you get sick…. Sometimes very sick….called “herxing” or “herx reaction” named after Dr Herxheimer who described this “you get sicker before you get better” in relation to treating syphillis (also a spirochete bacteria). You also have to be tested for about 7-8 co-infections that you can get from the single tick bite. I was lucky…most folks have 2-3 co-infections…I was spared that (with 80% accuracy from the specialized lab…but I did test positive for active Epstein Barr virus infection. So I have Lyme and chronic fatigue syndrome…. No wonder I can’t do anything!
    Lyme is a clinical diagnosis, made by a LLMD, by symptoms and circumstances and supported by test results.
    Lyme is an epidemic, being ignored by the government….it is the largest tick born illness and at 300,000 new cases per year (a low estimate by the CDC) it has more cases than breast cancer, HIV, colon cancer, hepatitis, etc.
    I know this got long, there are so many issues and Lyme is much more complicated and controversial than fibromyalgia. I should know…. Thought I had fibromyalgia for 20 years, knew a lot about it….now switched to Lyme, learning more and more each day.
    At least there is some hope of remission and improvement with Lyme, where there isn’t as much with fibromyalgia and chronic fatigue.
    I hope some of this helps. I wrote all this out on my phone while watching the Diamondbacks lose.. .again.
    If you have any specific questions, please email me: [email protected].
    May the Lord help and protect you in your healing journey!

  • Trisha Brasher

    Lisa, I was never notified of your reply so sorry for the delay. I’m going to give a detailed reply to S Friesen above, so please see that. God bless you!

  • S Friesen

    Thanks for posting this suggestion. I also appreciate your comment for us to “check him out and see if what he does makes sense.” That’s an insiders comment and very respectful! What have been your gains or improvement with his treatment?

  • anonymous

    endo is agony. I had it about 15-20 years before it was diagnosed and about 7 before my hysterectomy. It’s been 5 years since my hysterectomy and I still think “happy dance” every time I pass the feminine care aisle and know I don’t have that pain any more.They will tell you they can remove the implants surgically, but they come back. After my first surgery my doctor wanted to put me on a prostate cancer drug (I am a female with endo mind you) to delay the return of endo. Drugs aren’t good, but the feds are bleeping ridiculous. They harass doctors and patients for prescribing medically necessary pain relief. No one wants addiction but creating a situation where docs are afraid to prescribe and patients are afraid to ask for pain relief is wrong.

  • walker

    Oh just tell them all pain anyone has ever felt is all in their head because that’s where the brain is. See if they have anything to say to that. Or if they specifically mean how there is no medical tests that can prove that you have your condition, ask them if they think migraines are real.

  • walker

    “You would feel better if you would just move more” / “You aren’t pushing yourself hard enough”
    When you’ve seen that every time I do that I end up inured. Yes with fibro some moving is important, but I’m sick of hurting myself and making myself unable to do what little I normally can because you think I need to move more and go on 20-30+ mile bike rides and 5+ mile hikes like you do.

  • “You shouldn’t be taking warfarin! That’s RAT POISON!” Well, thanks, Dr. Quack, but, see, I’m not a rat and what kills the rat keeps me alive.

  • Lady Ehlers-Danlos

    I can. It’s unfortunately increasingly common in our society. Also, maybe this relative was hoping that with one more family member out of the way there would be unimpeded access to some inheritance? Just wondering.

  • Lady Ehlers-Danlos

    “Could it be your stress” is a sucky one, but the truth is that if your illness is something like Cushing’s disease, then stress can indeed make it much worse.

    Anyway, one of my personal favorites is the sort of thing that happens when somebody starts spouting Buddhist-esque psychobabble and telling you that “desire causes suffering, and if you would just stop wanting to not be sick and clinging to your health, you would feel better,” or “suffering comes from attaching meaning to feelings” (i.e., don’t listen to your body or your emotions and don’t think they are sending you important messages, you know, like “Don’t lift that!”).

    Or the solipsistic Law of Attraction-type stuff: “If you believe you are sick, you will be sick, and if you don’t, then you won’t.” Clap your hands if you believe in fairies, everyone! Look, I was sick when I was a kid, and I didn’t know what was wrong with me, and I didn’t know that it wasn’t normal to be in pain all the time–I hadn’t been diagnosed yet. But I was sick, even if I didn’t know I was and didn’t think I was. I mean, the antiscience slant of this stuff just dumbfounds me. This genetic mutation will be here whether I believe it is or not. Before Watson and Crick discovered DNA, did that mean it (and the unfortunate mutations that can come with it) didn’t exist just because people didn’t believe in it?!

    And then there’s “You’re so young and strong!” Young, yes, strong, no. I’m just good at hiding my delicacy. Sometimes I think the people who say this–and it is almost always older people–resent me for not being old, and that’s why they feel the need to be so trivializing.

    So, that’s my rant. I am new to this site, and hope some of you found some catharsis in what I had to say.

  • aye

    The “mass” by the way, was cancer, which I’d had since I was born. My neurologists said it was so massive that it completely blocked off the natural passageway where fluid should drain.

  • aYe

    Goodness! Just over 6 months after I turned 13, (August 2001) I woke up one morning with a headache. I didn’t think anything of it. I took an Ibuprofen and went on with my day. A month later, I had a pounding so severe in my head that it kept me away all night and the only way I could find a bit of relief was to lie face down on the floor of my bedroom, vomiting. Two months after that I started seeing two of everything when I turned my head a certain way. Finally in January, my parents took me to see a doctor at the local Family Medicine and he said I was having migraines. He prescribed some Ibuprofen 300 and sent us on our way. A week later we were back in his office. I was taking the medication every 4 hours and it wasn’t touching the pain. By this point my pupils were so naturally dilated that you could no longer see the iris (color) of my eyes. That second time we were in his office, he took my dad out into the hallway and told him that I was whining about my headaches to get attention and if my parents would ignore me–the headaches would go away.
    After three months of this, my parents worked around him to schedule a CT scan at the the local hospital. The scan revealed a mass in my brain that was causing severe hydrocephalus. When I checked into Duke University Hospital the following day, the neurologist on call said she had no idea how I was still alive–much less still conscious. That P.A. had me taking Ibuprofen 900, Oxycontin, prescription Imitrex, Neurontin, and one other narcotic all at the same time. He didn’t have me taking them either-or; it was altogether at once, and none of those medicines were touching the pain. But I didn’t look sick.
    You have my empathies!!!