Hi,
I would like to what the symptoms are of people diagnosed with Fybromyalgia. I was told (without any testing of other things) that I probably had Fibromyalgia, but I seem to have many symptoms of Lupus. Also, is there a certain test needed to be diagnosed with Lupus?
I would really like to hear from those of you suffering with Fibromyalgia/Lupus.
Thank you,
Janet
In Reply to: Fibromyalgia/Lupus posted by Janet on March 02, 1998 at 14:34:10:
Janet
I've been dxd with fibro and the very best book written on the subject is "Fibromyalgia and Chronic Myofascial Pain Syndrome" by Starlanyl and Copeland. It covers the whole gamut of symptoms,related disorders, and healing tools. The authors have the syndrome themselves. Starlanyl is an MD and Copeland is an MSW. Some people are dxd with both lupus and fibro., but as you will read on the BB, they are both different manifestations of leaky gut and bracing. If you read this board every day you will learn alot. Good luck to you
Nancy
In Reply to: Fibromyalgia/Lupus posted by Janet on March 02, 1998 at 14:34:10:
Janet,
My wife has been told she has fibro. and lupus-like syndrome. I say "told" because none of the mainstreams doctors have come out with a clear diagnosis. Her symptoms have been joint and muscle pain and fatigue, accompanied by a WIDE range of other symptoms.
My understanding of fibro. is that any good rheumatologist should be able to diagnosis it via the trigger points.
Lupus on the other hand is really difficult to diagnose. I would suggest that there are a multitude of ailments with very similar symptoms that appear to be lupus. Thus the "lupus-like" diagnosis that my wife received.
I would strongly suggest that you read Robert McFerran's work on this site. Click here for Bobs Book.
Also in Dr. Stoll's archives are a many messages regarding lupus and Leaky gut syndrome (LGS).
You may also want to check out my home page at the location below.
Be prepared to be overwhelmed and utterly confused. This is the beginning of understanding what is going on in your body. There are many very supportive people on this BB.
Hope this helps.
Peter
In Reply to: Fibromyalgia/Lupus posted by Janet on March 02, 1998 at 14:34:10:
Dear Janet,
There is no test for fibromyalgia but here IS a test of Lupus that is fairly accurate.
However, more tests are not what you need right now since the results will not change what you need to do about this.
What you need right now is "tincture of knowledge". Toward that end I would recommend 2 references--in this order: Read my book (link below) for a superficial understanding of how all this is related AND the best description of what to do about it. THEN, if you want a more in depth understanding of WHY you have what you have, read "Mind as Healer, Mind as Slayer" by Kenneth Pelletier. PhD.
THEN, please ask your questions here on the BB.
This is such an easy problem to resolve that you will be angry at the people who have struggled with it up to now.
However, recognize that it is going to take YOUR becoming an expert in your condition and not believing (as we MDs have tried to brainwash the public into believing for the past 100 years) that you could pay someone else to do your thinking for you.
Walt
Dear Lee,
I really feel for you right now! My wife and I were pretty much in your place about a year ago (ill following delivery of our 3rd child, joint and muscle pain, depression, positive ANA etc.). I don't have time to give you the details right now as I'm at work, but you may find some of my posts and Dr. Stoll's responses in the archives under Leaky Gut and Lupus.
In a nutshell, you will learn very quickly that mainstream medicine does not have clue how to deal with complex conditions such as your's.
You will then be overwhelmed by the variety of theories and "cures" that the alternative community has to offer. Most of these have some validity, but it is a real challenge to determine what is your "truth".
In addition to the books Dr. Stoll has recommended I would suggest Robert McFerran's work.
I would personally recommend that you NOT check the mainstream Lupus wegsites and literature. I my personal view (and I stress that this is my opinion), organizations such as the American Lupus Foundation, the Cancer Society etc. must "tow the allopathic line" in order to continue to receive any funding, so they will do very little to offer you alternatives. Their assumption will be that you do have lupus, so they would offer you alternative explanations for your symptoms (e.g., food allergies, leaky gut syndrome, insuline resistance ......).
If you would like to contact my wife and I directly you can click on my name above to send email.
Or just use pwray@magmacom.com.
Most importantly is to deal with a physician that offers hope. I understand that this may be a real challenge in a small town as your choices are limited. There is lots of hope here on this BB.
Take Care.
Peter
PS you may also find some interesting reading at my site (click below)
In Reply to: Re: Fibromyalgia/Lupus posted by Walt Stoll on March 04, 1998 at 10:41:45:
Thank you so much for your reply. I want so badly to begin the treatment that you have suggested, but money is the big issue right now.
As far as more test...I had had a doctor go ahead and test me for Lupus before I saw your reply. I didn't really understand what the doctor said, other than the one part of the Lupus test was negative, and the ana was borderline. He said a bunch of numbers, but I had no clue what it meant. I asked him if it could progress into Lupus and he sad that it was possible and that I should have it checked again later. I don't know how accurate the test was, but regardless, I need to somehow start getting the treatment that I need.
Thanks,
Janet
To whom ever it may concern,
I would greatly apriciate some details
about lupus my mother has it and I`m just wanting
to know more about it.
Words will help......
Neice
I have systemic Lupus, does your mom have discoid or systemic?...
I find that the forums are a great place to go for answers.....
http://www.lupus.org/lupus/forum/living.html
if you want e-mail me. I am 38 and was diagnosed only last year. but expected it for 2 years.
In Reply to: diabetic neuropathy posted by Angie Auvil on March 17, 1998 at 16:09:52:
I read your post and felt the need to reply,..... I am sorry about your illness... I too feel the medical field is limited... and am sorry you can pick only from so few Dr.s
I have searched 2 plus years for the reson for my illness... It turns out I have Lupus....
I have some periphial neuropothy, and have expereanced the burning ( not nearly as severe as yours) .
what poped into my mind was the swank diet. you can find it on the net.
They told me 2 years ago I may have MS or Lupus..... To tell the truth... i have symptoms of both... The burning is a classic MS... symptom... but is also associated with inflamation of the tissues around nerves. ( the swank diet is from someone who has MS , but has gone from severe problems to a near normal life. I my self find the leaky gut syndrom very interesting...
I pray you finds some answers. I will tell you what helped me was giving it to God to help me find someone to help me. I felt so much peace after I did.. ( my appointment was a month away... and I knew I was going to be diagnosed... and am now on med. ) God be with you. Gods will be done. I believe with Gods help you will find help.
You may want to ask for further testing. If your burning pain could be caused by inflamation as in Lupus... then --------steroid treatment---------- would help tremendously... ask to see a Rheumatologist. and get copies of all the tests run on you. check to see if they have ever run. ANA , anti-DNA , antiphospholipid. I feel they are not doing enough. Its not fair to blame diabetes for it all and not explore other possibilities. E-mail me if you like. wish there was more i could do to help.
( i have been to see neurologist and find them to be some of the worse Dr. s i have ever seen and they do not seem to understand Lupus at all. Marcia
In Reply to: Re: diabetic neuropathy posted by marcia on March 19, 1998 at 10:44:21:
Dear Marcia,
I surely hope that you will not now be satisfied just because a name has been placed on your "condition".
What you REALLY need to know is WHY you would be susceptible to something like this & get rid of those susceptibilities. The conventional treatment for Lupus causes more problems than the disease--although, frequently symptoms can be improved at first (before the side effects catch up with you).
Walt
In Reply to: Lupus posted by neice on March 18, 1998 at 23:10:26:
I just spoke with a very good friend of mine and she told me she just found out that she has lupus. She was in tears.
I do not know what this is. Is it a disease? Is there a cure for it? What is it? I feel if I know more about it maybe I can offer an encouraging word to my friend.
In Reply to: Re: Lupus posted by Walt Stoll on March 20, 1998 at 12:46:53:
Dr Stoll:
I would like to know about the potential of Lupas, that has been detected as a result of a urine/stool tests. Earlier there was a detection of protein in the blood during repeated tests. This initially started after birth of a child. The samples were taken after sleep. During the night there was a detection of pain in her hands.
Now they are going to actully test for Lupas?
Is ther any info you can share in regard to this case?
Richard
In Reply to: Re: Lupus posted by Debbie on March 27, 1998 at 10:47:34:
Dear Debbie,
If this is "discoid lupus", still limited to the skin, it is a sad statement of the state of her immune sustem but is not immediately a risk to life. If it is SLE (systemic lupus erythematosis) she is definitely at risk of her life.
Conventional medicine, as with ALL chronic conditions, has no solution to this condition. All we do is suppress the symptoms while the causes continue to eat away at the individual's life.
Have her use the search feature for this BB & read everything she can find about lupus or any autoimmune condition. THEN, if she still has questions, have her write again. This condition will never be resolved until SHE is ready to learn this stuff. Till then, nothing either of US can do will make a bit of difference.
She could not get lupus without having leaky gut syndrome first. Besides that, she has to have progessed to parasitosis, endocrinopathy and dysautonomia. These mechanisms have been well understood for more than 20 years but there is no money in teaching people how to reverse them---only in treating the symptoms.
Walt
In Reply to: Re: Lupus posted by richard a. hill on March 27, 1998 at 17:51:50:
Dear Richard,
I would be interested in any urine or stool tests for lupus. I am always ready to learn something new but I have never heard of such a thing. Biopsies and blood tests, along with an extensive history & physical exam, are the standards I know about.
Having said THAT, however, I would be a lot more interested in looking at any person in this fix as a set of life-long patterns so as to figure out WHY something like lupus might show itself. That is the only way one is going to reverse it anyhow.
Walt
What tests are there to tests to see if a person has lupus?
In Reply to: Lupus posted by Bill on March 28, 1998 at 11:52:50:
Dear Bill,
These are well known & range from a biopsy to a blood test. However, conventional medicine has no solution to this problem; Complementary medicine does.
If you have positive tests that show lupus, and you want to know your options to simple conventional treatment of symptoms, write again & I will do my best to point you in the direction of your becoming an expert in this condition & its causes.
Walt
Walt
In Reply to: Re: Lupus posted by Walt Stoll on March 28, 1998 at 13:05:24:
my mom has been seeing a lupus specialist for lupus/rheumatoid arthritis. I am angry at him because he will say she has it then say she doesnt. He says she has high uric acid levels and protein in urine. she doesnt have the butterfly skin problem but has started having high blood sugar levels. She is passin a jelly type substance from her bowels are we are just in limbo about lupus or no lupsu. I have learned lupus is fatal and I want to know if she has or has not, I would like to learn she has not!! please advise if at all possible. He is a noted Dr in Memphis TN Dr, Gupta
In Reply to: Re: Lupus posted by jeff on March 29, 1998 at 23:30:35:
Dear Jeff,
LOOK OUT FOR "NOTED DOCTORS". They are the last to learn something new. During this time of a rapidly changing paradigm in the healing profession, being a "stick in the mud" is dangerous to his patients.
Tolstoy said it best:
"I know that most men, including those at ease with problems of the greatest complexity, can seldom accept even the simplest and most obvoius truth if it be such as would oblige them to admit the falsity of conclusions which they have delighted in explaining to colleagues, which they have proudly taught to others, and which they have woven, thread by thread, into the fabric of their lives."
Since knowledge, and a better way of looking at things, is the only chance she has for final wellness you and your mother need to read several references (these are easy to read & understand--about 200 pages each), in this order:
1. My book (link below).
2. "Health at the Crossroads" by Dean Black, PhD--call (800) 333-4290.
3. One of the books resourced in my book: "Mind as Healer, Mind as Slayer" by Dr Pelletier (available in any bookstore & library). Even though this book was written about your mother, you really need the others first so you will better understand this one.
THEN, if either of you have questions, write again. In the meantime, I would be less desperate to get a lable put on her. There is no conventional curative treatment for lupus anyhow and the conventional attempts at suppressing symptoms frequently cause more damage than they do good.
As she gets well, I hope you both will share her experiences with the BB participants. There are lots of people out there with her same situation and they all deserve to know that they have options that are not being shared by the conventional medical monopoly.
Walt
In Reply to: Re: Lupus posted by Walt Stoll on March 29, 1998 at 17:14:06:
Walt,
Could you please elaborate on any specifics regarding the causes of lupus. Linda's ANA is climbing and the specialists are now saying they believe this is an indication she may be in the early stages of lupus.
Thanks
Peter
In Reply to: Re: Lupus posted by Peter Wray on March 30, 1998 at 22:55:07:
Dear Peter,
Lupus is an autoimmune inflammation of connective tissue. Since there is connective tissue in every tissue in the body, it can effect all parts of the body.
The causes are exactly the same as those for Rheumatoid Arthritis, all forms of myositis (including all congenital ones), polyneuritis, vasculitis, etc. Genetics determine which part of the system will show the most problem, not the causes. The effective practice of skilled relaxation is the key thing that always helps. Reading all of Robert McFerran's notes would get into this deeper than I know how to do so.
MAH, MAS also should give good background in these kind of conditions.
More questions?
Walt