Ignorant people who think they know fibro

Discussion in 'Fibromyalgia Main Forum' started by Cole1983, Nov 23, 2009.

  1. Cole1983

    Cole1983 New Member

    Okay okay... i was playing in my poker league yesterday and I was talking to my friend who has back issues just like me. Well everything was going fine hes a great guy who gave me some great advice on disability since he has been threw it. Well all of a sudden his wife came up to me and asked me what I had. Thinking she was a caring person I told her Fibro, Psoriatic Arthritis, Chronic Fatigue and Myofacial Pain. She stoped me and said "Well fibro isent real its just something Drs make up cause they dont know whats wrong with you." I said wait a min there is so much proof out there of all these people who are suffering with it. You think they are all making it up?? She said well fibro is toxins in your muscles that need to be release. just go get a masage. I said you dont understand how much it hurts just to be touched let alone a massage and i walked away.

    Now am i over reacting getting upset abt this?? My boyfriend says oh nicole just dont listen to her she is stupid. Yes i know this but it still hurts when people talk out there asses abt stuff they dont know. I think we can all relate in here how bad we feel all the time and how it effects every day life. I was just so upset i had to come talk to you guys lol

    Thanks for listening guys. I needed to vent. Love ya all (((((HUGS)))))
  2. TeaBisqit

    TeaBisqit Member

    I've heard alot of garbage out there. I hate it when they think they have fibro just because they work three jobs and workout at the gym and think their soreness and tiredness is fibro. Anyone who pushes themselves with three jobs and then goes to the gym afterward is going to be sore and tired. That is not fibro.

    I've also met people who are perfectly healthy and still claim to have fibro just because their doctor said their muscle soreness is fibro. Alot of doctors overdiagnose it and don't know how to diagnose fibro.

    And I've been through this with CFS, too. Where they all think they have it just because they are tired after work.

    I think it will take another twenty years or more for alot of this ignorance to go away.
  3. loto

    loto Member

    I think I would've totally lost my temper at that woman and would've told her to

    #@*% OFF!!!!!!!!!

  4. Gingareeree

    Gingareeree New Member

    About Dr.'s over Dx fibro. I was Dx with fibro almost two years ago. This as a result of the muscle knots and pain in my shoulders and neck. When I begged to differ,mainly because I didn't have a lot of the symptoms consistent with fibro,Dr's response was"well I'm not conceited enough to think I have all the answers,maybe you should see a Rheumy dr." I do have arthritis with bone spurs in my neck along with myofacial pain. I ,like some others on the board, have questions about having fibro. When I read some of the difficulties so many of you are facing,I can appreciate your frustration with poeple not getting it. It doesn't really help when the Dr.s are so quick to Dx anything with muscle pain as fibro. When I asked my Dr. to remove the dX from my file he just rolled his eyes and said he couldn't do that but would mention that my issues had been resolved! Needless to say I don't see him anymore!~~~Jeanne
  5. Catseye

    Catseye Member

    Actually, she is partially correct! But she's also typical - she heard something she doesn't understand and is just passing on half ass information. Telling you it's just toxins and to just go get a massage is pretty moronic. But we've all been duped so we've all been like her at some point. Not in our actions or words, necessarily, but in what we believed to be true about health and disease.

    This is a perfect example of why some people think fibro is real and some don't - even doctors. The medical profession hasn't exactly "made up" the term fibro, but what's happening is that they imply that nobody knows what causes it because THEY do not learn about and treat the causes. And they don't because they only use drugs and surgery to treat diseases. That's why they go to "medical" school, so they can sell "medicine". And in this case, the main medicine they use to treat fibro is pain killers. And, by the way, the medical profession does not treat causes of ANY chronic diseases, they merely treat symptoms. This happens because the FDA only allows drugs that have gone through clinical trials to be called "treatments" for particular diseases. This isn't illegal or anything, it's just how the medical profession makes money. If treatments for fibro were expensive, then you can bet they would be treating it.

    If you look at other health care professionals, the causes are known and there are treatments. It's only the medical profession that won't treat it because they use "medicine" that is FDA approved. And so instead of them saying "we don't treat it", which is true, they mislead people and say "there are no treatments". The medical profession is using semantics and the language of "legalese" to basically mislead people into believing that there are no treatments for fibro (or CFS, for that matter, everything here applies to it, too). It's true there are no medical treatments but that doesn't mean there are NO TREATMENTS AT ALL. There are, you just have to look elsewhere. This may be a problem if you are dependent on medical insurance to pay for treatments.

    It has nothing to do with "is this disease real or not"? It has to do with who treats it. The medical profession does not and since the FDA only allows the medical profession to prescribe "treatments" for things, then they can legally say there are no treatments for fibro. People take them at their word and that's the end of it. And then dummies like Nicole, who don't understand the way the medical profession works with patents and FDA approval and all that, say things like we've all heard: it's all in your head, doctors don't know what it is, just get a massage, have some chicken soup, etc. It is the medical profession misleading everybody that has caused these rifts between people everywhere. Until people understand this and start explaining it to their friends and neighbors, it will continue.

    So, what do you do? First, I would check out beatcfsandfms.org, you can see that fibro falls into 4 categories: Calcium/Phosphorus FMS (involves calcification of soft tissue cells), Osteomyelitis FMS (an infection inside bone), Arthritic FMS (infection on outside of bone) and Oxygen Deprivation FMS (self explanatory). They suggest how to figure out which type you have and what to do about it. It's complicated and will be a royal pain in the butt, but that's what these diseases are - very expensive, life changing, pains in the butt. I have found they are right on about CFS and I was able to fix myself based on what they say on their site. I can only imagine they are probably right on about fibro, too.

    When people say things like Nicole did, explain to them about how the medical profession treats diseases, with patentable, profitable drugs and that's why they don't treat things like fibro or CFS. I have found out what caused my own CFS and the treatments consist of a very restricted diet and supplements - the medical profession does not use these treatments because they aren't patentable. That's it in a nutshell.

  6. Cole1983

    Cole1983 New Member

    Hey my name is Nicole not the women who said the mean things lol but i agree with you. Thank you all for your support. I have definatly learned something.


  7. quanked

    quanked Member

    Are you saying that you have cured your CFIDS?
  8. Catseye

    Catseye Member

    Not completely, not yet, I still have some issues. But I have cured the hypoglycemia, dysbiosis and hyperpermeability that plagued me for several years. These are all a part of it. I started out completely bedridden and unable to care for myself. Now I am independent and can function. I was sick for so long that now my adrenal glands are not functioning optimally, but they should clear up after awhile. Just keep doing your homework and you'll figure out a plan! You just have to think outside the box!

    I have the help of a doctor I found that is educated in how to treat this. I found him at becomehealthynow. I filled out a short quiz, spoke with him briefly, and to me he sounded like he knew what to do. So I agreed to let him treat me and the rest is history. We do everything by phone and email. I get tests done and then we discuss the results and he makes recommendations. It's all very specific, no guessing and hoping. I have been able to track my progress through test results. It has been steady, gradual improvement.

    You can look up my old update posts, his name is Dr. Farr. The hypoglycemia took about a month to get rid of, the dysbiosis took about a year. I still take lots of supplements, the digestive system is very hard to fix once you've gone "over the edge" and developed CFS. Once I agreed to let Dr. Farr treat me, I went into his website and answered a couple hundred questions about all my symptoms - very specific questions.

    The first test he ordered for me was a CDSA - comprehensive digestive stool anaysis. With that, you can tell how your pancreas is functioning like if you are producing the digestive enzymes and stomach acid that you need to break down your food, how the liver and kidneys are functioning, the levels of good and bad bacteria and yeast that inhabit the gut and if you have inflammation. This test is a must for every CFSer. But a regular medical doctor won't be able to interpret it correctly and won't be able to make proper recommendations regarding the diet and supplements you need to correct the problems. Dr. Farr went to school to learn health care, NOT medicine. Big difference. I'm actually going to go back to school and learn what Dr. Farr does. I know too much about all this to let it go to waste now. I'm waiting on something and then I'll enroll online.
    [This Message was Edited on 11/23/2009]
  9. hopabout

    hopabout New Member

    Cole, I am so sorry someone treated you that way. Unfortunately there has been much negative publicity, no good findings and really horrible commericals on television showing how one little pill will make you well and you can entertain hundreds at the barbecue !

    I was hospitalized for many months, in unexpected cold snow could move nothing but my eyes for 16 days. I had 3 1/2 years of counseling, physical therapy with massage, biofeedback, heat pack treatments, and special exercises, only to become worse. I took intravenious injections of magnesium citrate, all the B vitamins and C. And, worsened. My veins were to small for chelation therapy. When I went on disability in 1989 I had 13 doctors, 4 of them specialist and the top doctors in Jacksonville Florida including Mayo Clinic.

    I lost my marriage, my business and my beautiful home I built myself and finally my dignity to this disease.

    I think there is nothing worse than someone saying to you that "you don't look sick." I guess we should be thankful, but inside I feel like a mac truck just ran over me at any given point in the day including waking up.

    The person who belittles another when they are ill, are self centered and lack knowledge.
    All you have to do is put on a neck brace, walk with a cane and attach a tens unit to you
    and you get sympathy from these poor souls. Unfortunately, my husband was one of them.

    The best defense that you can brace yourself with is to know the facts. Study the most recent research and be ready to share it with the dumb.

    Unfortunately, if they continue to link the XMRV (retro virus) to Fibromyalgia and Chronic Fatigue survivors, news will eventually be out that we are some pretty sick people and may have been contagious. I do know that the pathway to all of our diseases is similar to that of Alzheimer's. Many of our mother's have/had it. Lupus and RA are in many of our families as well as some of us. We may (that is my guess) have been born with XMRV in our blood.
    Depends on who Mom and Dad were and what ancestry they had as to which of these lovely illnesses we get dished out.

    I am aware that there is a protease in our liver called Alpha 1 Antitrypsin that when given to twins that had a deficiency of such, their fibromyalgia symptoms went away completely.
    There is just one reason why that message is not all over the net.... the cost is $100,000 a year. I just know Medicare is gonna jump on that one.

    If you dont' want to take a cane, put on a neck brace, and strap a tens unit to your blouse, just tell them you have a leukemia virus that will eventually cause cancer, until then, it will make you really sick, every day of your life. They have no medicine yet to stop it.

    (Try not to tell the dummies it could be contagious and you hope you didn't spread it to them.)


    Love ya ! HOP
  10. munch1958

    munch1958 Member

    I do agree with what your card playing friend said because IMHO "Fibromyalgia is a descriptive term for Lyme disease".



    I have been in treatment for Lyme for the past 3.5 years and am about 98% better. I'm just down to tendonitis pain in my wrists and SI joint. Fatigue is not a problem. Muscle pain is not a problem. I have no more daily headaches. No more migraines unless it rains and there is a huge shift in barometric pressure.

    I've seen roughly 225 doctors in my adult lifetime for various problems. Almost all said I had to learn to live with this. They were all wrong! No one has to learn to live with "Fibro". There are treatments that work.
  11. jewels920

    jewels920 New Member

    ...I no longer feel the need to defend the diagnosis nor do I feel like educating people who don't want to understand the diagnosis. I figure they just want to run their mouths and while they're doing that, I can just walk away at any point during the conversation. I feel that engaging someone like that in conversation, trying to explain the diagnosis, is like throwing energy into a giant black hole.

    Your mileage may vary. :)

  12. LLunn

    LLunn New Member

    I too deal with this daily. I just vented on my husband because my so-called "friend" blew me off. It's affected my work performance (I use to professionally clean houses). Can't do that one any more can't get back into office work at 51 and been trying the cashier scene without success! You look healthy there's nothing wrong with you. We all have bad days or get tired. My thought to all that is just one day these people should experience our pain and symptoms - that's all one day. Our lives would change because then these people would know that "it's not ALL in our heads."

    This is my first time ever writing to a support group. Never thought I would but after 10 years of this stuff I guess it's time. Thanks a bunch.
  13. Chelz

    Chelz New Member

    I agree with your post 100%. As a matter of fact, I could have wrote it myself. I have also tried to treat my own FM with restricted diet and supplements. Everything you said about the medical profession is right on.

    We all have to consider ourselves so lucky to have this message board with so many people with such bright insight and knowledge. Hugs and a healthy Thanksgiving to all. Chelz.
  14. PVLady

    PVLady New Member

    Don't tell others about your condition. They don't understand. Once you open the door by discussing it, they feel they have free rein to say whatever. I am so sick of these do gooder experts. I know they mean well but most of it is coming from "know it all" attitudes, not any real knowledge. Also not putting themselves in your place.

    To avoid this, next time someone asks just say "I'd rather not get into it". Gosh, you don't go around intruding on others asking personal questions about their medical conditions. The only real person who needs to hear about it is your doctor, and support groups.

    If you believe in "what goes around, comes around" - not that I am wishing anything on anyone, but it has happened to me. Gosh forbid, she may wake up one day and have something similar and realize how ignorant it was, saying those things.

    I am sure she meant well but don't let yourself get mad about it - the world is full of ignorant people, especially about fibro. Even alot of doctors are ignorant - telling you to exercise to get over it.

    It is too much stress getting into a long discussion trying to convince someone about fibro, they probably won't be listening anyway.

    [This Message was Edited on 11/26/2009]
  15. I agree with PVLady. It isn't worth telling people as they don't care anyways! why waste your breath!