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  1. #1
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    Anyone else have Fibromyalgia or Adrenal Insufficency?

    Just curious if any other riders suffer from some of the same things as I do. Often, it is difficult to ride, but usually feel much better afterwords if I don't over do so.

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    My wife has FM, as well as a host of other diseases. Fortunately adrenal insufficiency is not one of them.

    Is it Addison's disease that you have, or some other form of adrenal insufficiency?

    How long have you been riding with these chronicities? It is very commendable that you are active enough and are able to ride; of the many people that I have met with FM I do not think any of them would be able to ride a bike, let alone having that compounded with adrenal insufficiency.

    I am curious about how often and how far you ride? As well as how you have the fortitude to ride with such a condition?

    IMO I do not think that you will find many people riding bikes that have FM; of course, I hope that I am totally wrong in saying that.

    Again, I tip my hat to you, you appear as a very strong person, keep riding and show the rest that a disability will not keep a good person down.

  3. #3
    Tom (ex)Builder twahl's Avatar
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    Wife has Fibro, she rides a recumbent. It's been the best thing for her that we've found, gives her the ability to exercize without the pain, which in turn makes seems to keep the syptoms at bay somewhat.
    Tom

    "It hurts so good..."

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    Fibro = the hypochondriac's disease.

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    Started with asthma at age 30, which was only controlled with steroids (began in Saudi Arabia during Gulf War). Stayed on active duty until Nov 93' and medically retired at that time...not by choice. Steroid induced Cushings with secondary adrenal insufficiency. I've taken a replacement daily dose of steroids since 97'. FMS didn't start until 97'...not as bad as it used to be, but comes back quickly if I don't keep moving. You have to find something that works for you and keep the stress level low IMO. Try to bike daily, not far though. Winter is usually bad for me because I don't do as much. Just ordered a trainer last week and hope I will hop on it a few times each day.

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    Quote Originally Posted by NTheDogHouse
    Started with asthma at age 30, which was only controlled with steroids (began in Saudi Arabia during Gulf War). Stayed on active duty until Nov 93' and medically retired at that time...not by choice. Steroid induced Cushings with secondary adrenal insufficiency. I've taken a replacement daily dose of steroids since 97'. FMS didn't start until 97'...not as bad as it used to be, but comes back quickly if I don't keep moving. You have to find something that works for you and keep the stress level low IMO. Try to bike daily, not far though. Winter is usually bad for me because I don't do as much. Just ordered a trainer last week and hope I will hop on it a few times each day.
    It's interesting how exercise keeps hormones and swelling in check, as well as the other mechanisms that cause an inflammatory response. What is also interesting in talking to other people who have FMS is that it always seems to appear after a very traumatic experience, whether it is physical or emotional.

    I wonder if winter is worse for people with FMS because of the effects of reduced sunlight causing emotional stress, or a combination of factors such as reduced exercise, as maybe you are indicating, and reduced light. I have met people that have had some success with light therapy to combat the winter blahs that seem to exacerbate their FMS.

    It is interesting how one thing leads to another, in your case treating the asthma leading to iatrogenic Cushing and so on. I hope the trainer has a positive effect on you, and I wish you the best. I know it is easy for me to say don't give up hope, because although I live with someone who has FMS, as well as a neurological disease, I do not personally have it. I wish you the best and I hope the trainer helps with your symptoms, so you do not need to have more drugs with side effects that are worse than the disease itself.

    NTheDogHouse thank you for sharing your story, every time I get to hear someone tell thier story about thier life with a chronicity I am always very intersested. Again I wish you the best in you personal battle.

  7. #7
    tsl
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    Quote Originally Posted by !!Comatoa$ted
    IMO I do not think that you will find many people riding bikes that have FM; of course, I hope that I am totally wrong in saying that.
    I was diagnosed with FM in 1986. Bought my bike this spring and riding ever since.

    Quote Originally Posted by portis
    Fibro = the hypochondriac's disease.
    portis = azzhat
    My two favorite things in life are libraries and bicycles. They both move people forward without wasting anything.
    The perfect day: Riding a bike to the library.—Peter Golkin


    Lucky for me, I work at a library and bike to work.

  8. #8
    Tom (ex)Builder twahl's Avatar
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    Quote Originally Posted by Portis
    Fibro = the hypochondriac's disease.
    Spoken like a true idiot.
    Tom

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    Quote Originally Posted by Portis
    Fibro = the hypochondriac's disease.

    +1 It's the new "hip" disease. It's a good gig if you can get it, no tests to prove you don't have it but you get a bunch of drugs for the "paaaiiinnn". Yes, I know folks with FM. I used to think it was real till they got "the diagnosis". Now they blame everything on FM. Just by getting the diagnosis they went from a functional human to a cripple that is trying to get disability. All this in just a day, walks with a cane and everything.

    Oh it doesn't stop the smoking or drinking or eating junk food, all that stuff is "medicinal".


    Maybe it is real but I know an awful lot of people that get that diagnosis just by going to certain doctors.

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    Tom (ex)Builder twahl's Avatar
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    Yeah, that's my wife. Over the last couple of years the pain in her joints, particularly in her neck and shoulder, has developed to a point where she can't sleep for more than a couple of hours. Other symptoms get attributed to FM because it normally takes an FM patient 5 years to be diagnosed. There are a huge list of symptoms that doctors try to treat for patients, but never seem to get any better with normal treatments for those symptoms.

    My wife is approaching 20 years in the Air Force. She waited until this point to drop her retirement paperwork to to avoid a medical retirement. She's doing anything BUT trying to get a disability, she has a Master's in network security and the experience to back it up, and has been offered $160K as a contractor upon retirement. You think she's looking for a disability check?

    I have no doubt that there are people out there that take advantage, but that doesn't mean that the disease doesn't exist or that it doesn't effect many people. Besides, the thread was started by someone trying to deal with FM and curious if any others are riding with the disease. Does this sound like a play for a disability? Do you have anything to add to the discussion more intelligent than implying that FM sufferers are all hypochondriacs?
    Last edited by twahl; 10-09-06 at 09:02 AM.
    Tom

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    Quote Originally Posted by twahl
    Spoken like a true idiot.
    Spoken like a true hypochondriac. My brother in law is a medical doctor and he agrees that it is an unproven condition generally only afflicting hypochondriacs.

  12. #12
    Tom (ex)Builder twahl's Avatar
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    Maybe he should get out of the barn.
    Tom

    "It hurts so good..."

  13. #13
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    Fibromyalgia Syndrome (FMS) is not yet classified as a disease simply because the folks at NIH have not been able to find it's cause. There are not tests specially for this syndrome but many that when done properly will rule out many of the diseases that share similar symptoms. There are many diseases or conditions that can be found linked to FMS. These include Irritable Bowel Syndrome, Mitral Valve Prolapse (MVP), Myofacial Pain Syndrome (MPS), and a whole host of others.

    A typical fibromite may find riding a traditional diamond frame bike to be aggravating to their condition. A lot depends on where they suffer their pain the most. As my husband pointed out in one of his replies, I tend to suffer more in my shoulders and mid-thoracic to cervical spine support muscles.

    Portis's brother/friend who is a doctor is typical of some of the older doctors or those doctors who don't keep up with things. While it may seem that this is the "new hip" disease to have, it's actually been around for a very long time. The Rhuematology field came up with a classification test that they use to help them determine the possibility of FMS. There are 18 locations on the body where a rhuematologist will press. The belief when this test was established in 1994 was the patient had to have pain present in 11 out of 18. Since this time, it has been found in a multitude of studies that patients who have significant pain and score high enough one day, can be tested on another day and found to have 6 out of 18. Many doctors will say it's all in the patient's head. On one level they are right, chemical and hormonal imbalances have been found in many patients but it hasn't been determined that this a cause of the condition.

    Many fibromites will try to hide their pain (trust me that's a hard thing to do) while they work through doctors and other medical staff to find a way to manage the pain and to sleep. This condition is not just about the chronic pain, but about the loss of restful sleep and the downward spiral that can lead to depression and thus a viscous circle of increased pain. More pain = less sleep = depression, increased stress = more pain = less sleep etc.

    A huge relief is usually felt when a diagnosis is finally received. As pointed out previously, it tends to take a long time to receive a diagnosis. I was tested for Multiple Sclerosis as well as a torn rotator cuff. The physical therapist found large ridges of knots in my muscles that they couldn't get to relax using electrical stimulation and message. We also have to deal with the frustration and depression that comes from being told this is chronic and there is no cure.

    Some fibromites have it better then others - less intense. Some are pretty bad even when they are controlling it. Personally, I'm still finding my way. I know that I benefit from the endorphin release when I ride. But I know I suffer more if I try to ride a diamond frame. My Bacchetta Cafe is my solution. I still have pain when I ride but no where near as bad as on my Allez. I just have to pay attention to my body and the signals it sends. Sometimes, it takes having a little push from twahl to get me on my bike to help me deal with a bad pain day.

    I'd be happy to discuss this intelligently with whomever just drop me a private post.

  14. #14
    Baka dakara supercub's Avatar
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    Quote Originally Posted by Portis
    Spoken like a true hypochondriac. My brother in law is a medical doctor and he agrees that it is an unproven condition generally only afflicting hypochondriacs.
    It hurts. And when you get less sleep and feel stressed, it hurts more. Sometimes it hurts so bad that you really can't deal.

    Don't blame the medical establishment's inability to explain this condition on the patient. And your brother-in-law ought to feel ashamed for belittling people's pain. What kind of doctor does that?

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    Quote Originally Posted by supercub
    It hurts. And when you get less sleep and feel stressed, it hurts more. Sometimes it hurts so bad that you really can't deal.

    Don't blame the medical establishment's inability to explain this condition on the patient. And your brother-in-law ought to feel ashamed for belittling people's pain. What kind of doctor does that?

    I wonder if this doctor feels that all people feel pain in the same way, and thus a doctor can measure pain and therefore tell the patient how much pain they are feeling.
    Last edited by !!Comatoa$ted; 10-09-06 at 05:43 PM.

  16. #16
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    Quote Originally Posted by Portis
    Spoken like a true hypochondriac. My brother in law is a medical doctor and he agrees that it is an unproven condition generally only afflicting hypochondriacs.
    And a lot of doctors don't know the difference between ADHD and ADD, much less the difference in symptoms between adults and children. A lot of doctors don't take insomnia seriously, and tell you to drink a glass of warm milk when you haven't slept more than an hour a night in two weeks. A lot of doctors didn't believe in SAD, Lupus, and even AIDS at one point. Just because one doctor doesn't keep informed doesn't prove anything.

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    Quote Originally Posted by mominboots
    Fibromyalgia Syndrome (FMS) is not yet classified as a disease simply because the folks at NIH have not been able to find it's cause.

    Is that also true of Parkinson's, and Alzheimer's? I think fibro was invented by doctors to finally find a way to make money off of hypochondriacs. Give them a fake illness and spend the rest of their lives treating them for it. Sounds like a money maker to me.

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    Quote Originally Posted by patc
    And a lot of doctors don't know the difference between ADHD and ADD, much less the difference in symptoms between adults and children. A lot of doctors don't take insomnia seriously, and tell you to drink a glass of warm milk when you haven't slept more than an hour a night in two weeks. A lot of doctors didn't believe in SAD, Lupus, and even AIDS at one point. Just because one doctor doesn't keep informed doesn't prove anything.
    People actually die of aids and lupus.

    Judging from the insomnia drug commercials on TV it seems to be taken pretty seriously. Doctors may be cautious in handing out drugs and rightly so, people become dependent on drugs, some people make up illnesses just to get them.

  19. #19
    Baka dakara supercub's Avatar
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    Quote Originally Posted by Portis
    Is that also true of Parkinson's, and Alzheimer's? I think fibro was invented by doctors to finally find a way to make money off of hypochondriacs. Give them a fake illness and spend the rest of their lives treating them for it. Sounds like a money maker to me.
    So any claim of pain is bull****? You sound like a lovely person.

  20. #20
    Tom (ex)Builder twahl's Avatar
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    Quote Originally Posted by Portis
    Is that also true of Parkinson's, and Alzheimer's? I think fibro was invented by doctors to finally find a way to make money off of hypochondriacs. Give them a fake illness and spend the rest of their lives treating them for it. Sounds like a money maker to me.
    Yeah, the military docs that diagnosed her are making a mint off it.

    By your argument, Parkinson's and Alzheimer's are made up diseases as well.
    Tom

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    Quote Originally Posted by Portis
    Is that also true of Parkinson's, and Alzheimer's? I think fibro was invented by doctors to finally find a way to make money off of hypochondriacs. Give them a fake illness and spend the rest of their lives treating them for it. Sounds like a money maker to me.
    The causes of parkinsons and alzheimers is well known, at least manifestations in the body, you have the brain plaques with alzheimers and dopamine receptors with parkinsons. The "fibro" patients simply have every test in the book to rule out any real disease. Then they are diagnosed with "fibro".

    There is no non-subjective test for "fibro" except pain. It may be real but a "disease" with no way to detect it, and no actual tissue damage, is heaven sent for hypochondriacs. Heck, nobody can prove you DON'T have it!! It's seems to be a freebee consolation disease also for people with RA (which can be detected in lab tests) Lupus, and other immune and connective tissue disease disorders. I actaully know several people that have those things and have also been told they have "fibro". NO ****, THEY HAVE RA, DO YOU EXPECT THEM NOT TO BE IN PAIN!!!

    I wonder how many people go to the fibro doctors and are told they DON'T have fibro! No kidding, I know a doctor that seems to give that diagnosis to every single patient I know that has gone to him! What is the statistical probablilty in that! I know people that have gone to cancer doctors and been told they don't have cancer, I know people that go to GI doctors and are told they do not have ulcers, yet all of this doctors patients have fibro! OMG and the drugs!!! The main conversation the "fibro" people I know have are about drugs, what they are on, how much they take, how they can get more.

  22. #22
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    Quote Originally Posted by !!Comatoa$ted
    I wonder if this doctor feels that all people feel pain in the same way, and thus a doctor can measure pain and therefore tell the patient how much pain they are feeling.

    That's a good one!! My friends brother says that all the time "my pain is worse than your pain" ect. If anybody makes the mistake of bringing up an injury, illness, or whatever it becomes a contest as to who is in the most pain. He can walk by a doorway and bonk his arm lightly on the frame and he starts whining about his "fibro".

    The funny thing is when he was first diagnosed everything that happened to him, hangovers, overeating, ect was "his fibro". Finally the doctor figured out he was on too many drugs, side effect of which is nausea, and took him off some.

    Sometimes he will get really drunk, smoke lots of cigs and pot, then mope around the next day at his parents and whissfully talk about his headache and his mom will baby him about "his fibro". Awwww, brians fibro is really acting up today". She doens't know about the drinking cause they are very religious and he isn't supposed to drink. Mom is also a raving hypochondriac although she does not have "fibro" at this time.

    So all the "fibro" sites say that smoking and stuff is bad for "fibro", I wonder why he does more of it now. Most people when they have something take steps to make themselves feel better not worse, unless of course they thrive on other peoples pity and like to talk about "my disease" all the time.


    It's like ever since he got this "diagnosis" it's been his crutch for everything he hasn't acchomplished in life, he now has the perfect excuse. He didn't complain about any of this stuff till a friend told him to see this doctor cause his ankles hurt, now he has "fibro".

    I had bad ankles for a long time too, it's what got me to take up cycling again. They were so sore and swollen I couldn't walk! I lost weight, got some orthopedic insoles, got some physical therepy, and they are much better now. I'll bet I would have "fibro" too if I would have gone to that doctor! But then I don't particularly want to be sick.















    Not saying this is the case with all "fibro" patients, but it is the case for all the ones that I know. I know there is a correlation between sleep deprivation and pain not only from personal experiance but also I've read that "fibro" symptoms can be reproduced by sleep depriviation.

  23. #23
    Tom (ex)Builder twahl's Avatar
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    Quote Originally Posted by margoC
    Not saying this is the case with all "fibro" patients, but it is the case for all the ones that I know. I know there is a correlation between sleep deprivation and pain not only from personal experiance but also I've read that "fibro" symptoms can be reproduced by sleep depriviation.
    You know, there probably are a lot of people milking it, but that's a very different thing than saying that it's made up, or that all fibro patients are hypochondriacs. I've been married to mominboots for 16 years. She's not one to go looking for a health problem. She's not looking for an excuse. She doesn't want to be unhealthy. She doesn't smoke, she doesn't drink. We've made diet changes according to various recommendations and she works through the pain she experiences rather than using it as an excuse for not doing things. She hates it when she can't do something because of the fibro, and she's not happy about the drugs, especially when one of the side effects is weight gain. She fights to maintain weight at a 500-700 calorie a day deficit.

    There probably are some lazy doctors out there, doctors that will throw out a fibro diagnosis to shut a patient up. But that's not the norm. There are common pain points that have been identified in fibro patients, and a conscientious doctor would keep up with the available information and diagnose according to the latest knowledge.

    But this thread wasn't started to discuss whether or not it exists, it was started for fibro patients to share their cycling experience. Even if it were a psychological disease, that's still a valid discussion on this forum, and I think that anyone belittling someone who is trying to find a way to continue riding while suffering from a real or imagined disease is a scumbag. If you have nothing helpful to add, go find another thread where you do.
    Tom

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    Modern medicine is still kinda primitive.

    Modern medicine is still kind of primitive.Medical doctors(as opposed to surgeons) have only been able to do "net good" since about 1945; this is when the 1st antibiotics-penicillin- became widely available(there were sulfa drugs before the war, but they weren't widely available in the USA). During the 1918-1919 flu epidemic in the USA(500,000 deaths in the USA) patients were bled(a pint or so)-IN THE USA- by well intentioned MDs-not quacks.
    Vaccines have been around much longer-200 years-but they are preventive measures-rarely used for active disease, so I'm ignoring them.It wasn't known how or why they worked when they came into use.
    Until ~1990 peptic ulcers were treated -in the USA and elsewhere- with antacids,mild diets and a whole host of RISKY OPERATIONS WITH SIGNIFICANT MORTALITY and extremely significant morbidity.At any onetime at least 1,000,000 folks in the USA carried that diagnosis. In the early 80's an Australian MD started claiming that he had discovered the cause of ulcers, and it wasn't stress of or spicy diets, it was a bacteria. Well it took him 5-10 years, but he finally was proven correct and now Peptic ulcers are treated with antibiotics.
    My point is that modern medicine is a very new.It isn't a science, but it is now science based.MDs-even very young up to date ones-just don't know what they don't know. Just because there isn't a lab test for FM, it doesn't mean that there isn't any pathology.
    The fact that FM cases are much more common in females could indicate that it is an autoimmune disease-which are 3-4x times more common in females.It almost certainly isn't one disease, but....
    Now Gulf War Syndrome is a different story. The fact that it is much more common in reserve units than in active military has been interpreted to mean that the reservists are looking for a free lunch. They are using it as an opportunity to cash in after coming back to unsatisfactory lives after the deployment. Now others interpret it by saying that active military folks are being discouraged from claiming "Gulf War Syndrome."
    No question there are plenty of hustlers milking both for all they are worth.
    Soon, there will be tests that actually "show" pain.Areas of the brain that are considered to be related to pain will "light up" if the pt is feeling pain.It will be much harder for folks to "fake" pain.You can have pain without pathology in the area feeling the pain(folks feel pain in a leg that has been gone for a long time).
    It is probably better for MDs to take pts at their word in respect to pain.Someday, they will be able to prove or disprove the pain-but not just yet.
    Luck,Charlie
    PS-Now you can disprove disabilities-hire a detective with a camera.
    Last edited by phoebeisis; 10-10-06 at 09:47 PM.

  25. #25
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    Quote Originally Posted by supercub
    So any claim of pain is bull****? You sound like a lovely person.
    No, pain is a part of being alive. Trouble is, most hypocondriacs are under the belief that if there is a pain, then there is something wrong with them in the form of a disease. Fibro is a disease created by doctors as well as the human mind. It really doesn't exist.

    Have you ever wondered how many people had fibro back in the days of the depression? I'm guessing not many were diagnosed. What would they tell the local doc? "Hey doc I am tired and I hurt all the time."

    "Well, no ***** sherlock, we are ALL tired and in pain but we consider ourselves lucky because many of our friends and neighbors are dead!", replies the doc.

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