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In Reply to: Re: IC, Arthritis Hit At Same Time - ?? (Archive in arthritis.) posted by Walt Stoll on September 26, 2000 at 09:41:49:
Hi, Dr. Stoll! Thanks for the advice! The bracing thing makes sense to me, have always been a "high-strung" type. Had lots of abuse in childhood, basically been on the defensive and scared all the time ever since, even in my dreams. The only times in my life I've been really relaxed have been when I've been given Versed. If I could only be on Versed my whole life, I'd be fine, I think.
I'm going to have to figure this whole thing out without the help of conventional medicine - they don't have answers for me. The doc called today with my lab results. The ANA is now negative - last summer it was positive. RF negative, sed rate negative. Now, those are all good things, but I'm still trying to figure out, why the positive ANA last July? I asked my urologist about the positive ANA, wondering if IC patients often had a result like that - he said there was no connection as far as he has seen so far. I feel sort of confused and frustrated, feel like I'm getting more questions than answers with conventional medicine. The X-rays of my knees showed only soft-tissue swelling with no structural deformities.
Am I the only person who finds all this really confusing? Sheesh, all I know is that my body doesn't work like it used to, or like I want it to, so I have to find some way to heal myself.
Thanks for your help,
Love, Isis
In Reply to: Re: IC, Arthritis Hit At Same Time - ?? posted by Elle on September 25, 2000 at 21:58:16:
Yup, you're right, I know. Easier said than done, I think I am a true addict!
Love, Isis
Hi, Dr. Stoll! I've been reading information on your site with great interest, thanks for having this site.
I used to be in what I thought was fairly good health until about seven months ago, when I had a kidney infection complicated by a kidney stone (which eventually passed.) I had one UTI after another, and was given one antibiotic after another, until finally there were no signs of infection. At that point, IC was suspected, and was recently confirmed (last week) following a hydrodistention/cystoscopy. (By the way, you mention the standard treatment of urethral dilation for IC, but that's not really used anymore - now they use hydrodistention and DMSO treatments and Elmiron, antidepressants, Tagamet, other antihistamines, instead of the urethral dilations.) I got complete relief from the hydrodistention so far - I'm one of the lucky ones.
At the same time I developed IC, I also started having athritis-type pains in both my knees - not too bad, but bad enough I can no longer run, kneel or squat without lots of pain. In the mornings, I have problems getting down stairs, when I sit for awhile, my hips seem to lock up a bit, and my hands are a bit stiff, not bad but not normal.
AND, my eyes got dry about the same time, too. I'm having a really hard time anymore tolerating my contact lenses, and I've had one eye infection after another, even when I don't wear my contacts.
I know my diet over the years has been a lousy one. Way too much sugar.
I can't think of any other specific food I'm addicted to, just sugar, mostly. I used to live on Coca-Cola's, twinkies, candy, cookies, pies, etc. Very little fresh food or healthy food, unfortunately. I was in the Army and a long-distance runner, so I looked like I was in good shape, but I'm sure I did terrible damage to my body by years of this unhealthy diet, and now I am paying the price. I am devastated to think I may never run again. I miss it so much. I always thought I'd be in my 60's, still running. I just don't feel healthy unless I run every day, you know? If I don't run, I've noticed this all my life, I get sluggish, I get "brain fog," I get lethargic, depressed, feel tired all the time. Running wakes me up, gets my blood moving, makes me happy - it was my "miracle drug" for life. I don't know how to live without it.
Anyway, a couple months after the joint pains started, I went in and expressed my fears about it being rheumatoid arthritis (RA). Told them it runs in my family, strongly. Always hits the knees and hips, in my family, always comes on about middle age. My uncle is lucky enough to live in a time when we have hip and knee replacements - that was done for him - but my older relatives, all now deceased, ended up in wheelchairs.
They gave me a RF test and an ANA test. The doc told me my test results were normal, that I just had osteoarthritis, to take tylenol and learn to live with it.
Well, I went back last week to another doc (Army health care system, you may or may not see the same doc twice) and complained again about my joints and begged to see a rheumatologist. Was told "no, not unless we have good reason for you to see one."
She looked at my RF test and my ANA test. She asked me what follow-ups had been done for my positive ANA test. I told her no one ever told me it was positive, that I had actually been told it was negative/normal. She frowned and said I'd have to have whole new blood work done. So I went last week and am waiting for the results.
I know they say it's possible to have a positive ANA and not have anything wrong with you, but combined with the joint pains I've been having (mild, admittedly, but not normal for me) and the fatigue/fevers/flu-like feelings I've been having off and on, I just feel I might have a mild case of RA.
And I'm not sure I buy the idea that a positive ANA can mean "nothing." I think it means something is up. It's just CAN'T be a good thing, can it, to have much higher levels than normal of the "let's attack the body" stuff? I know some of that needs to be there to clear away the dead cells, etc. but a high level, again...I just don't see how that can ever be a good thing.
I guess I'll find out more when my next set of labs come back, but I'm just feeling as if I'm 39 going on 93, and I worry that I'll never be healthy again.
I think my problem might be mostly with sugar - I might have problems/allergies with other foods, too, but the one that really seems to stand out - the one that I have constant, strong craving for - is sugar. I know sugar can suppress the immune system, but do you think excess sugar consumption over many years, or an allergy of sorts to sugar while consuming it, could lead to problems like IC/RA/general poor health?
I don't know if this information helps any, but I was allergic to a lot of things as a baby/toddler. Had to have special formula, allergic to the regular stuff. Got sick on almost any foods they tried to give me. Sick all the time in general, with sore throats and high fevers. Got a high fever as a 2 year old which resulted in seizures and I stopped breathing. Turned blue, was not breathing for several minutes before my mother found a nurse who lived nearby, who was able to restore my breathing and packed me in ice. For the next year or so, I continued to have high fevers and my parents were advised to keep me bathed in ice water during those times, which they did, to bring the fevers down.
My blood type is AB+.
Thank you for any help/advice/words you have for me...
Love, Isis
In Reply to: IC, Arthritis Hit At Same Time - ?? posted by Isis on September 24, 2000 at 12:21:01:
No More Sugar!!!!
In Reply to: IC, Arthritis Hit At Same Time - ?? posted by Isis on September 24, 2000 at 12:21:01:
Hi, Isis.
Since both arthritis and IC are caused by bracing, this combination is pretty common. ALL of the symptoms you listed here are basically related to the same thing. Your bodymind is calling to you any way it can.
From what you have said here, I think it behooves the "medical profession" to prove that you do not have RA. If they wait till any idiot can make the diagnosis........
In the meantime, you would be very wise to do Robert McFerran's thing and practice SR regularly. You should start underwater exercises and flexibility exercises every day until the symptoms have been gond for a couple of years.
See the glossary for any unfamiliar terms.
Let us know how you do and what you find out.
Walt
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