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Costochondritis

Posted by
Melinda on March 15, 1999 at 17:37:43:

I have had costochondritis for a few mos. now. It was real bad with constant pain. The pain has been gone for about a month. I was wonderingif it can recur again? I have been spending time under my desk hooking up my computer, exercising, housework, couls this activity cause it to flare up? It is still sore to the touch, and am having pain in the upper chest. When I press on it it hurts. Melinda



Re: Costochondritis

Posted by
Denise Wyrick on March 16, 1999 at 09:56:40:

In Reply to: Costochondritis posted by Melinda on March 15, 1999 at 17:37:43:

Hi Melinda, Welcome to the BB. This topic was discussed just yesterday if you will look for the thread FALLING APART-HELP. Both Jenny and Peggy have had experience dealing with this condition and are experts at resolving it. There is some good information that will help make sure that the condition does not return. Dr. Stoll has written a summary to describe "what is chronic bracing" that is the underlying cause of your symptoms. I hope that this helps. And again welcome to the BB you have come to the right place :-) there is a world of good information here right at your finger tips...dive in!
All the best,
Denise



Re: Costochondritis

Posted by Walt Stoll on March 16, 1999 at 14:16:55:

In Reply to: Costochondritis posted by Melinda on March 15, 1999 at 17:37:43:

Hi, Melinda.

Until you get at the causes, it WILL recur over & over & over & over.......

Walt



Re: Costochondritis

Posted by Melinda on March 16, 1999 at 15:47:45:

In Reply to: Re: Costochondritis posted by Walt Stoll on March 16, 1999 at 14:16:55:

What could cause all this costo? I was lifting weights for a short time. Is this repairable? I joined a costo group online, and there are people that have had it 20 yrs, off and on flare-ups.



Re: Costochondritis-Denise & Peggy

Posted by Melinda on March 16, 1999 at 15:50:24:

In Reply to: Re: Costochondritis posted by Denise Wyrick on March 16, 1999 at 09:56:40:

If you have time could you write and tell me how you got it, any flare ups and your symptoms please, I'd appreciate it.Thank You



Re: Costochondritis

Posted by David Ferguson, D.C. on March 16, 1999 at 18:03:41:

In Reply to: Re: Costochondritis posted by Melinda on March 16, 1999 at 15:47:45:

You need to find a chiropractor and start doing skilled relaxtion.

There is a lot on this site about Costocondritis if you scroll down and probably some in the archives as well.



My Costochondritis Story

Posted by
Peggy on March 16, 1999 at 18:44:53:

In Reply to: Re: Costochondritis-Denise & Peggy posted by Melinda on March 16, 1999 at 15:50:24:

My costo showed up Summer '96 during a period when I was playing tennis. I didn't know what it was then and that it even had a name. I thought that I just strained something after one particular game where I was swinging particularly hard. BTW, it wasn't my first tennis game after a sedentary period (some people insist they got their costo cuz they jumped into some activity and tried too much before they were ready). I had already been playing tennis and racquet ball for a while.

It hurt like hell. It started out just a little pain when pressing on the sternum, then sometimes pain just to the right and later on to the left. It also would wrap around and I'd have pain in the same spot, but in my back between the shoulder blades. It was so bad at times that any upper body movement was difficult. Lifting things, turning my head to the side, moving my arms in certain ways. It subsided, but continued to come and go. Even if it wasn't a full blown flare, I could (most of the time) just slightly feel it's presence... a turn of the head or a little press on the sternum, and there it was.

A few months later I became pregnant and during my pregnancy I went to a chiropractor for the costo and a back pain. She said my rib was twisted and, like me, figured it was caused by the tennis. For a few weeks she kept adjusting my rib, but it never really got better. Between that, the back pain, and pregnancy, I was hobbling around like I was 90 for a while (I was 30).

Fast forward to Summer '98 when I discovered this BB. I was looking for help for another very serious problem (in my 3rd trimester of above-mentioned pregnancy I was finally pushed completely over the cliff; this is a very short list of all the little problems I've had). Now remember, the costo never went away for very long. It was here that I came across the costo archives and discovered: that's what I have!! It was also here that I learned WHY the costo occurred. So, in Aug '98 I began to faithfully meditate every day, as well as exercise few times a week and I haven't had even the slightest hint of the costochondritis since (the back pain is gone too).

Peggy



Re: My Costochondritis Story

Posted by Melinda on March 16, 1999 at 22:45:17:

In Reply to: My Costochondritis Story posted by Peggy on March 16, 1999 at 18:44:53:

Thank you Peggy!!! I appreciate your post. Meditation huh? Hmmm never tried that.



Re: My Costochondritis Story (Testimonial)

Posted by Walt Stoll on March 17, 1999 at 09:02:56:

In Reply to: My Costochondritis Story posted by Peggy on March 16, 1999 at 18:44:53:

Thanks, Peggy!

Walt



Re: My Costochondritis Story (Meditation is ONE form of SR.)

Posted by Walt Stoll on March 17, 1999 at 09:06:36:

In Reply to: Re: My Costochondritis Story posted by Melinda on March 16, 1999 at 22:45:17:

Dear Melinda,

SKILLED RELAXATION is what you need. Meditation MAY be your way. There are hundreds of ways to get to the brain rhythm that does all the goodies and meditation is one of them.

Go to the home page of this 'site and read about SR.

It WILL clear this up IF you do what works for you.

Let us know how you do.

In the meantime, Rolfing is probably the quickest way to get rid of your symptoms.

Walt



Re: My Costochondritis Story (Meditation is ONE form of SR.)

Posted by Melinda on March 17, 1999 at 12:07:33:

In Reply to: Re: My Costochondritis Story (Meditation is ONE form of SR.) posted by Walt Stoll on March 17, 1999 at 09:06:36:

ROLFING????????? Sounds nasty, what is it?



Re: My Costochondritis Story (Meditation is ONE form of SR.) (info about Rolfing)

Posted by Walt Stoll on March 18, 1999 at 11:43:21:

In Reply to: Re: My Costochondritis Story (Meditation is ONE form of SR.) posted by Melinda on March 17, 1999 at 12:07:33:

Hi, Melinda.

I have been through two complete Rolfings (10 sessions each) and can say that they were some of the highlights of my life. Not too "nasty"!

Rolfing has been discussed for years on this BB and there are lengthy testimonials from people who are (or have been) being Rolfed. See the archives.

Call (800) 447-0150 or (800) 530-8875 for the closest Certified Rolfer to you AND for more information about Rolfing. The best book I know about it is "Bodies, Health & Consciousness" by Rosie Speigel (a senior instructor at the Rolfing Institute). Call (800) 938-0942 for information about how to get a copy.

Walt



Re: My Costochondritis Story

Posted by
Tricia on May 17, 1999 at 21:11:55:

In Reply to: My Costochondritis Story posted by Peggy on March 16, 1999 at 18:44:53:

My Costo started 10/98. I was exercising regularly:weight lifting, starimaster etc. The chest pains started at first I was diagnosed with bronchis, then a virus and finally costo. The cold season was a killer, pain and fatigue always. I missed out on alot of activites, became depressed and the cycle continued. Went on vacation and felt a little better in warmer climate and thought maybe when the warm weather comes it will get better. Well, here I am 7 months latter in mid may and the pain continues. I have started walking to get some form of exercise and stress releif. I am thinking about tia Che classes. I am nervous about doing the wrong thing, but I have to do something. Does this go away? How ling does it take? What can I do to speed the process?




Re: My Costochondritis Story (I wonder?)

Posted by Walt Stoll on May 18, 1999 at 11:11:37:

In Reply to: Re: My Costochondritis Story posted by Tricia on May 17, 1999 at 21:11:55:

Hi, Tricia.

The regular practice of effective skilled relaxation is the only thing I have ever seen reliably resolve this problem in the long run. I notice that you have not mentioned that. Perhaps it is that old truism raising its head: "The most important thing for anyone to do to resolve any chronic problem is almost always the last thing the person is willing to do."

You could get immediate relief from Rolfing but it would only last a year or so without the SR.

Walt



Re: My Costochondritis Story

Posted by
Pam Randall on May 18, 1999 at 12:19:53:

In Reply to: Re: My Costochondritis Story posted by Tricia on May 17, 1999 at 21:11:55:

I've had costochondritis for almost 4 years, ever since I first began experiencing symptoms which led my doctor to a diagnosis of systemic lupus. I can't stress enough the importance of getting a good doctor who will prescribe medicine to treat your pain. Too many doctors are afraid of prescribing too much pain medication and creating drug addicts. If your doctor can't find a medicine that is strong enough to treat your pain, get a different doctor. I honestly don't think some doctors realize how difficult it is to have a ribcage that hurts all the time and how much it limits your activities.

Anyway, my ribcage pain is constant, and almost never completely goes away. It gets worse when I have a bad flare or when I tire myself out too much. Lying down and putting a heating pad or hot water bottle on my chest helps a lot. To help with the pain during the day, I take various drugs to help me with lupus and inflamation in general. I am on prednisone, plaquenil, relafen, and when the pain gets really bad I also might try combinations of darvocet, percocet, and Tylenol 3.

I know all this information probably doesn't sound very good, but I actually am able to maintain a fairly good quality of life, and I just have grown accustomed to living with pain. I had to. I hope the costochondritis will go away someday, but I have to make the best of each day and try to enjoy what I am able to do and not dwell on what I can't do. Lastly, if you can find a support group in your area to join, it will benefit you greatly.



Re: My Costochondritis Story (Get rid of it!)

Posted by Walt Stoll on May 19, 1999 at 14:48:13:

In Reply to: Re: My Costochondritis Story posted by Pam Randall on May 18, 1999 at 12:19:53:

Hi, Pam.

If you will excuse the blunt words:

The h-ll with the support group! Why not just get rid of it? There are more fun clubs to belong to anyhow.

Costochondritis is among the easiest things to get rid of. We have discussed it on this BB for years.

Get Rolfed and you will not have any pain for at least a year. Learn & practice skilled relaxation at least twice a day for 20 minutes & it will never come back.

Chiropractic is also helpful (ask Doc Dave on this BB).

Why not put a note on the BB titled something like "Costochondritis success stories?" There are many who frequent this site that have resolved it. Don't be trapped by the allopathic monopoly.

Walt



Just Say No to Support Groups!

Posted by
RocketHealer Jim++ on May 19, 1999 at 16:32:20:

In Reply to: Re: My Costochondritis Story (Get rid of it!) posted by Walt Stoll on May 19, 1999 at 14:48:13:

Walt, you struck a major chord with me on this one.

A while back, I was visiting some chronic pain and FMS/CFIDS support groups, looking for some people there who perhaps could use some wellness and/or healing help to get back onto the track of living without such pain. I recommended this site, and my own LFTWR site.

Instead of having some of the folks show up here, or of my getting some inquiries at my site, or my simply being totally ignored, I was virtually "run out of the support groups" by fundamentalist Christians. Very upsetting, to say the least!

Clearly these people in long-term chronic pain have their pain firmly in hand (it is a sort of a "possession" thing, not to mention a social crutch that eliminates any further responsibility on their part) and they plan to keep it and to discuss it forever in their little support groups. For some reason or another, the support groups stay rather small. I really don't know why anyone would WANT to join them, since they are so PAINFUL to participate in :-)

A person coming into such a support group offering to "help them actually eliminate the causes of their pain and to get on with their life" is a major threat to the very existance of the support group.

The people (in chronic pain) who would seem to be the very best candidates for Wellness and for spiritual healing seem to be the very *last* people in the whole world who would try either of these. But getting major pain surgery or frequently taking very strong addictive pain medicine, now that is their God-Given Natural Right! And don't get in their way to pick up the next prescription.

Sadly I know that they *all* could benefit greatly from wellness and similar healing techniques/practices, but they will never do so while they hold tightly on to *their* pain.

So I tend to leave pain-sufferers where they lie. Dealing with them just upsets everyone involved, without positive results.

Off Soapbox.



Re: Just Say No to Support Groups!

Posted by Walt Stoll on May 20, 1999 at 12:07:31:

In Reply to: Just Say No to Support Groups! posted by RocketHealer Jim++ on May 19, 1999 at 16:32:20:

Thanks, RocketHealer Jim!

YOU GOT THAT RIGHT!

I hesitated to say all this since I already have the reputation for being blunt & outspoken.

I think support groups are fine for things that truly have no solution. Hospice is a good example of these. However, those chronic conditions are nearly non-existant now that I know of a better way to address them.

I have had very similar experiences with closed-minded people at support groups. I do think that they are named appropriately, though. They support the person's keeping the condition.

Like most things, organizations frequently forget their origins and the perpetuation of the group begins to out- shine the resolution of the problems.

I truly believe that, if a 100% cure for cancer, arthritis, coronary heart disease, childhood violence, MS, etc. would be reported today, it would be denied, vehemently by these organizations, tomorrow.

Walt



Re: Just Say No to Support Groups! - reminds me of Polio Organization

Posted by
RocketHealer Jim++ on May 20, 1999 at 12:24:28:

In Reply to: Re: Just Say No to Support Groups! posted by Walt Stoll on May 20, 1999 at 12:07:31:

Thanks, Walt, for your insight on this. Sorry if I'm now Mr. Blunt and Outspoken.

I'm reminded of a story (true or not????) about the International Polio Organization (sorry I don't remember their real name) many years ago. When it appeared that the use of the Polio vaccine was on the verge of eliminating Polio forever from the face of the earth, the Director of the organization was asked publicly if they would shut their organization down, since their mission was accomplished. He simply said "No, we will not." As far as I know, they are still fund-raising and operating today.



Re: My Costochondritis Story (Get rid of it!)

Posted by Pam Randall on May 21, 1999 at 15:02:59:

In Reply to: Re: My Costochondritis Story (Get rid of it!) posted by Walt Stoll on May 19, 1999 at 14:48:13:


Walt,

I'm sorry that you haven't heard many positive stories regarding support groups for chronic conditions (of which Lupus is one - there is no cure currently). I, while not being a permanent member of any support group for Lupus or pain, do participate in them sometimes, both online and in person, and I have found comfort in the fact that I'm not alone in the illness and symptoms that I experience on a daily basis. Lupus is a very misunderstood condition, and although you may think it is not life-threatening, it can be in severe cases. Charles Kuralt, who used to host the TV show "Sunday Morning," died from complications from Lupus. Several members of an online chat group I joined two years ago have also passed away from this condition, because their immune systems destroyed their organs and bodies beyond the relief offered by any of the following: rolfing, chiropractic, medical, or spiritual help. I hate taking all the medicines I do, but I have tried meditation under the guidance of several therapists, physical therapy, chiropractic care/rolfing, exercise, rest, whirlpool baths, herbal remedies, various diets, etc. I don't like being in pain; it prevents me from doing things I love to do and from being with the people I love because I often cannot travel. I would do anything, believe me, to stop what my body is doing to itself. All I was trying to get across is what has worked for me, and everyone is different; there is not one thing that will work for everyone where Lupus and many other painful conditions are concerned. I am happy you have found relief in whatever manner you have - I don't make any judgments concerning your reasoning, and I believe in offering whatever help/advice/wisdom we each have to offer to help others in need. Finally, I am currently being weaned from some of my medications, but it has to be done slowly over time because I've been taking them for so long. I have recently switched doctors because I wanted to get off of all these drugs if I could. But, I may need to be on some type of medication for a while still, because when I have tried to stop them in the past, I have gotten very sick. My kidneys even failed once because I had an allergic reaction to a food I'd suddenly become allergic to. That's my immune system gone haywire - my body producing antibodies against itself. Anyway, I appreciate your taking the time to respond to my posting, and I've babbled on way too long in this one...... Take care, and I hope you continue to do well.



Re: My Costochondritis Story (Get rid of it!)

Posted by
Robert McFerran on May 21, 1999 at 18:13:32:

In Reply to: Re: My Costochondritis Story (Get rid of it!) posted by Pam Randall on May 21, 1999 at 15:02:59:

Pam,

Here is an exerpt from the 2nd and 3rd chapters of my book on arthritis (including Lupus). There might be a cure for your condition -- but there is no way that you can find out since you haven't personally tried it yet.

Chapter 2

As best I can recall, it wasn’t until I was 18 years old before I fully realized that my parents weren’t just my parents. They were people. They had aspirations, concerns and interests beyond my own. Like all individuals they had their strengths and weaknesses. It really is a tribute to them that I was insulated from this reality for so long. I just went merrily along during childhood and adolescence, never even giving a thought to the mechanics of how they were able to provide for me. I just knew they would.

I had a very similar awakening when I first started working behind the scenes with physicians as a practice management consultant. I found that doctors were fallible just like us. Even worse they were pressed to their limits spreading time among patients, family, friends, hobbies and other outside interests. The idea that physicians had much time to study new treatment techniques or contemplate why a certain patient wasn’t doing so well with a prescribed therapy quickly vanished. I found that their main source of new medical information was the occasional 15 minute visit from a pharmaceutical representative or perhaps a day or two away with their peers at a semi-annual academy meeting.

There is one other concept that you’ll need to get under your belt to realize the true limitations placed on your physician -- it’s called ‘standard of care’. Say you have a chronic sinus infection and present the problem to a local ear, nose and throat doc who subsequently recommends that you require immediate surgery. Upon getting a second opinion you find that the ear, nose and throat specialist just down the street thinks that surgery isn’t necessary at all and instead prescribes a series of antibiotics. Now who are you supposed to believe?

Years ago doctors saw that this type of inconsistency could lead to a loss of confidence by the public. They started to create medical boards to develop standards for certain medical situations so that physicians could be consistent. It seemed apparent that patients were enormously ignorant of proper medical procedures and that these medical boards were needed to protect them from ‘bad’ doctors. Standard of care would also serve an important dual purpose by protecting the physician from being sued by their patient. If a patient had a terrible outcome but the physician followed the standard of care there was a much smaller chance that the patient would receive a desired verdict in a lawsuit.

All this sounds prudent until you realize that all the doctors in any specialty, including rheumatology, were now forced to walk in lock-step. Any innovation, discovery or improvement suddenly breaks step with the local standard of care. The physician who does anything different has suddenly painted a large bullseye on his back saying sue me -- and shortly there will be lawyers there to oblige.

There are exceptions, but the majority of today’s doctors have turned over all responsibility for improving the medicine within their specialty to the ‘boys in research’. The eggs are definitely ‘all in one basket’ and we’re waiting for a miracle answer.

As you read this book you’ll develop an understanding of what causes your arthritis and why those waiting for research to solve their problem are doomed to be disappointed. Modern researchers may represent our best and brightest minds, but they are much too far from patients to really understand the problem they are working on. Dr. Dean Ornish (the now famous cardiologist) would have never recognized the connection between diet and coronary disease (which today has widespread acceptance) if he hadn’t literally lived among his patients.

Modern research will provide less toxic drugs that match today’s pharmaceuticals in effectiveness, but they will always exact a cost to overall health. Much like the story of the little Dutch boy. He used his finger to plug the leak in the dam only to find that when he did, another leak would form. In the case of arthritis, even if a drug stops inflammation today, new leaks appear tomorrow. They take form as other chronic conditions including fatigue, depression, anxiety, mental fog, severe allergies, headaches, disrupted sleep, diabetes, weight gain or loss; gastric, urinary, thyroid and reproductive problems.

Now you’ll be able to appreciate why your rheumatologist doesn’t know the connections that you will discover in this book. So don’t be surprised when you feel better than you have in years that your physician doesn’t share your excitement -- he can’t. Medicine and your doctor are in a deep rut and we’ve helped put them there.


CHAPTER 3

Right about now you might be wondering how rheumatology can break their terrible lockstep to improve the plight of those actually suffering with arthritis. The answer quite simply is with the proof. Unfortunately it will take lots of proof and the right type of proof before budging things in the field of rheumatology an inch. If there is a discovery or a breakthrough it must be put to the test. However the manner in which today’s medicine tests something is strongly biased.

The test that medicine values the most is the ‘double blind crossover placebo controlled study.’ Here both the patient and doctor are unaware of who is receiving the real treatment and who is receiving the placebo. This type of study requires gathering a group (or sample) of patients that have the same disease. Usually researchers look for folks who are ‘matched’ or generally have the same type of arthritis, with the same severity and have suffered roughly the same number of years.

The placebo is a fake treatment used in the place of the real thing. Researchers have found that some patients will often improve for no reason at all other than the fact that they think they are receiving treatment. In these studies half the patients get the appropriate treatment while the others get the placebo. There is more than a little ethical problem in asking patients (in the placebo group) to suspend treatment for an extended period of time when they have severe disease. It is the hope and intent of the study to prove that the placebo group will do quantifiably worse than the group receiving treatment. As you know, worse can mean irreversible joint damage. Many physicians refuse to submit their patients to the above testing protocols for these ethical reasons.

The double blind crossover placebo controlled study is uniquely well suited for testing drugs while at the same time ill-equipped to test the effectiveness of non-drug therapies. In most non-drug therapies the treatment is impossible to hide so the placebo effect cannot be removed from the equation. Running any kind of extended trial can be prohibitively expensive. A simple trial involving only 40 or so patients can easily run in excess of $100,000. Larger follow-up trials at other locations must be performed by other investigators to validate initial findings. For reasons that we’ll discuss later, results from different studies rarely have strong correlation. The consequence is that even more studies are demanded to demonstrate that a therapy is effective.

The great majority of drugs used to fight arthritis have been grandfathered in. A recent drug that showed great promise for both anti-inflammatory and possibly disease modifying effects was Tenidap. The drug research was completed and initial trials looked good but the manufacturer ultimately decided to shelve the product. The reason was economic. Even though they were already somewhere in the middle of the approval process, they believed that the cost of completing the needed trials and bringing the drug to market would not recoup expenses and a reasonable profit.

Arthritis research is faced with searching in two different haystacks. Out of necessity they've chosen the one with money in it. The other stack doesn't have any money but has the cure. The good news is that you have the ability to search the other haystack for yourself.




Re: My Costochondritis Story (Get rid of it!) (FATE!)

Posted by Walt Stoll on May 22, 1999 at 12:28:05:

In Reply to: Re: My Costochondritis Story (Get rid of it!) posted by Pam Randall on May 21, 1999 at 15:02:59:

Dear Pam.

Isn't the question WHY is your immune system doing this?

Plenty of researchers around the world know why.

I understand that is hard for people to shift their paradigm but REALLY! It seems to me that it is a LOT harder to live with lupus than to shift a paradigm.

It IS up to the person. It is my job to open doors NOT to carry people through them.

Perhaps if I can make you angry you will find the energy to go beyond your support group acceptance of your "fate".

Walt



How DARE you speak so condescendingly to someone in pain!!!!!

Posted by Pam Randall on June 01, 1999 at 12:25:01:

In Reply to: Re: My Costochondritis Story (Get rid of it!) (FATE!) posted by Walt Stoll on May 22, 1999 at 12:28:05:

Dear Walt,

There ARE lots of people who know why lupus and costochondritis cause pain, but unless you know something that millions of doctors the world over would love to know, there is still no cure for lupus. People reach stages and levels of remission, even for years, but they are not cured.

I never claimed that support groups were for everyone, just for SOME people, and for you to say that NONE of them do any good is IRRESPONSIBLE and IGNORANT. It is also ignorant of you to say that support groups just perpetuate a feeling of "oh well, this is just my fate and I'll have to live with pain forever." Perhaps some people have had that experience with them, but all of the lupus support groups that I have dealt with spread information about things that help relieve the symptoms and the pain, and they have all been supportive of the attitude "TOGETHER, WE CAN BEAT THIS, AND A CURE IS GOING TO COME IF WE FIGHT THIS AND DON'T LET IT WIN!!!" But in the meantime, support groups help people to deal with their day-to-day lives, while they still have illnesses and pain.

Also, I told you I am not a member of ANY support group now; I was in the past. I am not pushing them on anyone, just stating my point that you are misinformed if you think all support groups are ineffective.

As far as costochondritis, I have had it EVERY DAY FOR 4 YEARS, non-stop. It never goes away. I hate costochondritis and what it has done to my life and to my body, and I most certainly DO NOT accept my fate. I fight it every chance I have. I have tried everything under the sun, including rolfing and physical therapy, as I said previously. THEY DIDN'T WORK!!!!!! Is it so incomprehensible to you that your methods might not work for everyone either???? I'm not saying your beliefs are wrong, but you sound so self-righteous - who are you to tell me what I have experienced and tried for relief are wrong and foolish???? Where do you get off??? I'm sorry, but you sound like just another huckster trying to sell snake oil to make a buck from people in pain and with health problems. And your attitude is what needs an adjustment or rolfing or whatever!!! I'd rather find some other way of treating my pain (or hopefully curing it) than to do anything you suggest, because of the way you put people down if they disagree with you......... Maybe someday you'll get a serious, painfull disease that is difficult if not impossible to treat, and you'll have some inkling of what I'm talking about, but right now you just don't "get it."



Re: How DARE you speak so condescendingly to someone in pain!!!!!

Posted by
Robert McFerran on June 01, 1999 at 13:22:08:

In Reply to: How DARE you speak so condescendingly to someone in pain!!!!! posted by Pam Randall on June 01, 1999 at 12:25:01:

Pam,

I've followed this string and unfortunately Dr. Stoll and his observations are right on the money and while you are obviously not stupid -- your comments show your ignorance (or lack of knowledge) about Lupus and the very condition that you have.

As it turns out Dr. Stoll HAS defined the mechanisms that cause Lupus as well as your costochondritis. Your ignorance becomes highlighted when you suggest that Dr. Stoll is providing some 'snake oil' remedy that will make him money. Even the MOST SUPERFICIAL review of what is going on at his site reveals that ALL of the recommendations have to do with the individual learning the mechanisms that brought them to their painful condition -- and then learning how to reverse/resolve them. The answer never lies in taking a pill or some other 'snake-oil' -- instead it relies on something that you DO, RATHER THAN WHAT YOU TAKE -- which costs nothing and certainly doesn't put any money in Dr. Stoll's pocket.

Go to ANY support group (in person or even the newsgroup support groups) with some new information about how to resolve your 'uncurable' problem and you will be greeted with the following reaction:

1) Get the hell out of here! We KNOW there is no cure (since that is what all of our expert physicians tell us). You're just trying some scam to make money.

2) You couldn't have recovered from MY uncurable disease SO you must not have had it in the first place. You were misdiagnosed.

3) O.K. -- so maybe your DID have the disease, BUT you were just lucky -- a one in a million. This stuff won't work for me or others.

4) If what you say has worked for so many people, where are the research studies to PROVE it!

5) O.K, so you have a research study BUT the research that you gave me isn't by a peer reviewed journal.

6) O.K. -- it's the research you gave me is peer reviewed BUT it isn't by a MAJOR peer reviewed journal.

7) How DARE you speak so condescendingly to someone in pain! You have no idea how difficult MY life is -- you are a mean-spirited person!

Of course not everyone that attends a support group is the same -- but certainly the great majority are too lazy to really investigate new things without first throwing around the above comments. I'm afraid that you fall into this category.

Educate yourself before going off on someone trying to help you.

Bob



Re: How DARE you .......... OK, one last letter......

Posted by Pam Randall on June 01, 1999 at 14:42:24:

In Reply to: Re: How DARE you speak so condescendingly to someone in pain!!!!! posted by Robert McFerran on June 01, 1999 at 13:22:08:

Dear Bob,

I have had lupus for several years. I have not been misdiagnosed. I am educated more than I'd like to be about lupus and its treatments. I'm taking more medicine than I'd like just so I can get by and go to work every day. I doubt you or Dr. Stoll have lupus. As far as I am concerned, Dr. Stoll has not been trying to help me. I simply and innocently (because I'd never posted on this bulletin board before a few days ago) replied to someone else who was experiencing the pain of costochondritis. I only told her what had worked for me. I didn't say that she or anyone else who had written to her were wrong or had done anything foolish. I made no judgments at all. I was a fellow sufferer of costochondritis trying to help. All I have gotten from Dr. Stoll since that posting of mine is GRIEF!!!! I merely suggested that this woman might find companionship and support by joining a group of others who also have costochondritis, because I had found this to be helpful in the past. Dr. Stoll jumped all over my suggestion and said support groups were basically useless and perpetuated a feeling of helplessness. I don't pretend to know everything, and I hope Dr. Stoll doesn't either. But he IS IGNORANT if he thinks that only he has the answers and that everyone else's ideas/thoughts/suggestions are wrong/foolish/stupid. One thing I am NOT ignorant about is lupus. I have it, so I find it extremely offensive for you or anyone else to tell me I don't know what I'm talking about when it comes to suggesting anything that might help. You are as self-righteous and misinformed as Dr. Stoll is, if you think I even believe all those things you outlined in your reply to me. Those things are not the beliefs of the lupus support groups I've participated in. In fact, taken to a certain extent, this bulletin board can be thought of as a kind of a support group, because all the people who write in are trying to help each other or asking for help. That's pretty much what an online support group (at least the ones I've had experience with) does, just in real-time, rather than in letters and replies. I've learned more from the other people in my support groups and from other people emailing me online regarding lupus than I have learned from all of my rheumatologists COMBINED!!!! One thing you should understand is I and many others online with serious illnesses are often very mistrustful of doctors, and we find out more through reading books and journal articles about our illnesses and from others who also have them than from the medical community. Anyway, you can relax, because I won't be posting to this bulletin board any more. I have never felt so attacked online in my life as I have felt here after just trying to help a fellow human being in pain. You talk about being attacked in support groups......... well, take a look at yourself before you judge the behavior of others. You and Dr. Stoll have about as much of an "attacking" nature as any negative support group you might be referring to. As far as I'm concerned, neither of you has shown me the slightest compassion or the benefit of the doubt at all, and that is a sad testimony of how defensive you feel about your beliefs and how threatened you feel by others' beliefs.



Re: How DARE you .......... OK, one last letter......

Posted by
Robert McFerran on June 01, 1999 at 22:03:44:

In Reply to: Re: How DARE you .......... OK, one last letter...... posted by Pam Randall on June 01, 1999 at 14:42:24:

Pam,

You have the choice -- resolution of your problem or support.

You've made your decision.

Good luck -- you're going to need it.

Bob



Re: How DARE you... the SR "pill" :-)

Posted by RocketHealer Jim++ on June 02, 1999 at 08:57:40:

In Reply to: Re: How DARE you speak so condescendingly to someone in pain!!!!! posted by Robert McFerran on June 01, 1999 at 13:22:08:

Robert:

I think you are right on in your observations.

In your later post, you differentiate between support and cure, and suggest that a person must make a choice. There also, I think you are right on. I don't think a person can do both.

What you said parallels my own experiences/observations of people in pain who participate in support groups, when faced with the possibility of a real "cure". And I've never been "selling" anything, either.

Perhaps we need to develop and mass market a very expensive SR pill :-). You take two of them a day. Each time you take it, you must do so in a quiet place, you must remain there for a full 20 minutes, very still, but alert. You *must* focus on something, perhaps your breathing. Any thoughts that come into your mind *must* be allowed to "flow on downstream" without analysis or judgment. You *must* do these things for the pill to be "effective". And what's in the pill? You guess? And it won't be Sugar! Additional pills may be taken, on a particularly tough day, if needed, as long as the accompanying instructions are followed for each pill.

I think that pain (real) in too many cases leads to suffering (a *choice* on the part of the individual) and to a sort of a "possession" by the pain. It "speaks" when formerly the person would have spoken. It somehow takes over the thinking processes and shunts all logic and belief, not to mention Hope, aside. The person who can most use the information offered freely here is the LAST person in the world likely to accept and to practice it. Sad, but true.

But I'm glad that Walt and others are doing what they can to help others.



Re: Costochondritis

Posted by T Madaffer on September 30, 1999 at 22:10:45:

In Reply to: Re: Costochondritis posted by Melinda on March 16, 1999 at 15:47:45:

costochondritis is cuased by nerves bing pinched between T5 and T8 of the spine a MRI can confirm



Re: Costochondritis (Nerve pinch is an effect not a cause!)

Posted by Walt Stoll on October 01, 1999 at 11:40:27:

In Reply to: Re: Costochondritis posted by T Madaffer on September 30, 1999 at 22:10:45:

Hi, T.

I beg to differ. Costochondritis is caused by the intercostal muscles never relaxing (BRACING!) even though the person continues to breathe. This is the same as trying to run with a charley horse---one can STOP running!

The Nerve pinching you mention is FAR down the path of causation & is actually a distant effect of the causes.

Eventually, one can even get extensive arthritis from this process. It, too, is an effect and not a cause. Of course, ANY effect can aggravate an already existing situation.

Questions?

Walt



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