I'm having speech trouble and it's getting embarrasing!

[gritsar]

Quote:
Yeah, I was diagnosed with the fibro. back in 1996 and they checked my thyroid before sending me to the rheumatologist.
ETA: My internist checked my thyroid again about a month ago, along with a whole battery of blood tests. Just a few more tests medicare won't pay for.

Also, I was diagnosed with Raynaud's syndrome about a year and a half ago. Isotoner gloves work miracles for that. All these things that go along with lupus, being diagnosed with one after the other, is the reason I finally insisted that my internist refer me back to a rheum. I haven't seen one in many years.

 

[BarkerChickens]

Quote:
Yeah, I was diagnosed with the fibro. back in 1996 and they checked my thyroid before sending me to the rheumatologist.
ETA: My internist checked my thyroid again about a month ago, along with a whole battery of blood tests. Just a few more tests medicare won't pay for.

Also, I was diagnosed with Raynaud's syndrome about a year and a half ago. Isotoner gloves work miracles for that. All these things that go along with lupus, being diagnosed with one after the other, is the reason I finally insisted that my internist refer me back to a rheum. I haven't seen one in many years.

Yep...Raynaud's is another one of those common secondary ones. Raynaud's may be what is causing the mottling as well. If the skin feels normal/smooth...probably from the Raynaud's. If it more like the rash, then I'd have the doc look at it as a possible symptom of lupus. Have they ran the test for your ANA? Clearly it's autoimmune...that test needs to be done if it hasn't already.

Lupus is a pain in the backside (and everywhere else) when it is not under control! After 15 yrs, I have learned how to identify flare-ups, etc. Lupus is the reason I won't have kids of my own. Between being genetic, being high-risk for miscarriage or stillborn, and the pregnancy making flare-ups worse....no thanks. I'll adopt...or just fill the yard full of animals.

 

[wischickenlover]

I am 41, and in the last year, have had these sorts of things happen to me A LOT! Many times, my DH or kids will have to finish sentences for me, because I cant think of "that word". Or....I work as a cook in a nursing home, and every day, at least a couple of times, I will go into the walk-in cooler to retrieve something....and I will stand there, and stand there, not being able to remember what I went in there for! It is very annoying, but you're not alone!

 

[curliet]

When you and I talked we kind of laughed about the fact that we were both diagnosed with Lupus, and a few other things before being referred to a rheumatologist, who then said, "oh no, this is FM." However, after having suffered with this now for quite a while, I feel that our first diagnosis of Lupus, with arthritis and asthma and the fm was correct. I feel this way because I'm convinced that all these things are part of one bigger issue, and our bodies have definitely turned against us. And it's so difficult to decide how to proceed with your chores for the day when today you are dealing with the 'fog', yesterday it was your arthritic knee and hands, and tomorrow it will be a flare up of your asthma. You just never know, and that can lead to varying degrees of depression. Which doesn't help a bit.
My doc tried various meds to help me with the FM symptoms, and the first were anti-depressants which only made me not care how bad I felt. Then the last was Lyrica, which was developed as an anti seizure med and makes the brain not recognise those false pain signals it's receiving. Not one of the meds has ever worked for over 6 weeks. They're great for about that long, and then, NOTHING. Now, I just remind myself daily to do what I can do when I can do it, and when I can't, I don't. And I try not to let it get to me. Too much. But for those Chooks and others that depend on me, I get out there when I don't really want to, and "get 'er done" and then later go and collapse for awhile. And in the meantime just let them laugh at how funny you talk. You know what you meant. (and I probably do too)

 

[SarahFair]

I will get my words mixed up in a sentence. Like the first part then the end then the middle. I have to fight and correct myself alot. As far as calling out objects...I have to describe them half the time.
Ill walk into my kitchen and compeletly forget what I walked in there for only to turn around 3 more times and do the same thing.

Sometimes Ill need to pee and when I reach my bedroom I forget what I was doing.. Only when I get nestled back to what I was doing Ill have to really go again!

 

[lalaland]

I was diagnosed with Lupus some years ago - it was bad, couldn't be outside in the sun at all, or I'ld be in misery. Flare-ups were becoming, well, not a flare-up, just a continual problem with severe joint pain, etc. I was on so many drugs that I had to have blood tests every other week to watch for liver damage.

For reasons unrelated to lupus, I started eating organic and vegetarian. I started feeling better, and within a year was no longer taking meds, and could consistently care for myself (was at the point where I needed help to wash my hair, iron, etc).

I think the chemical load of normal american eating was too much for me. I was vegetarian for about 10 years, now I have started eating meat again. I still try to be careful about where the meat comes from - I notice if I have too many restaurant meals I start to get the joint issues and fatigue, etc.

I feel very certain I would not meet any diagnostic criteria today - my health has improved so much.

My suggestion for anyone with the rheumatoid type issues (fibro, lupus, etc) would be to see if you can eat only things your grandmother would have eaten - read the labels - don't eat the edible non-food stuff. give it a year, see what happens! see if you can go organic, or move in that direction. there is a list published by the government of the top 10 fruits and vegetables that have the highest pesticide/herbicide load in them - if you can't go all organic, at least don't eat those!

start removing unnessesary exposures: highly scented detergents, body care products (at least the ones with known carcinogens), plug in scents, household cleaners - switch to cheaper, better for you, better for the earth stuff -

and thanks for all the reminders about sleep! I knew there was a reason I couldn't get words out:/

time to go out and weed the garden!

 

[gritsar]

Quote:
I get up and go into the bathroom to pee. When I get there I realize the cat box needs scooping, so I go into the kitchen and get the plastic bags and head back to the bathroom. When I get in there I decide to brush my hair, so I set the bag down and brush my hair. Then I go sit down and realize I didn't scoop the box, so back I go. I manage to get the box scooped and go sit down again. Then and only then do I realize what I went into the bathroom for in the first place.
Repeat multiple times each day.

Oh! And the new drug the doc put me on for sleep? Worked a total of about five days. I was awake five times in the night last night.

 

[BarkerChickens]

Quote:
That is the same with me! I was on so many meds and when the doc said that my flare-ups were getting out of control, and that she wanted to put me on chemo to suppress my immune system (to see if it would slow down or stop the flare-up), I freaked! I stopped all meds (oh, what fun that was) and started eating natural (not processed) foods, I was already vegetarian (so that didn't change) and I cut out wheat (per a recommendation from a different doctor). I still went to my doctor, and within 3 months my blood tests went back to normal levels and I wasn't having symptoms. Since meeting my husband, I have been eating meat again, but we both try to eat a natural diet (gotta splurge sometimes though!

). I kept my Celebrex around for a couple years for "as needed" use, but eventually stopped that completely too. Controlling flare-ups when symptoms first appear and get them under control at that point is SOOOO much easier than trying to stopping one that is in full swing. I haven't had a major flare-up form Lupus or Fibromyalgia since (though I have my days here and there, of course).

My Rheumotologist said that it is because with Lupus the system is over-active and attacks itself and the chemical drugs are treated as foreign, which causes more attacks. She said that Lupus and drugs is a catch 22...the drugs make the flare-ups worse, but the flare-ups require more drugs to handle the symptoms.

 

[Judy]

The simple truth is that our environment is full of added chemicals. Air, food additives, lord knows what in the water or soil, etc....

My son is 33. I really had to work to try to keep his diet and such relatively free of additives. I certainly did not entirely succeed, but it was evident that the better I did with this, the better he felt and acted. I truly feel that what appears to be autoimmune disorders is often simply reactions to chemicals in food, water or air, that do not belong there; or at least, I feel these symptoms are aggravated by these synthetics. I am not an "organic" advocate. I just don't like all the artificial stuff that is added to what we must consume.

I am not trying to deny the existence of autoimmune disorders, at all. I just feel that in many cases, the symptoms can at least be reduced with elimination of as many of these lab created chemicals as we can, and I suspect there are some cases seen as autoimmune that are simply reactions to some sort of chemical. I do not at all doubt the reports here of reduced symptoms from a more natural approach.

Not trying to negate a real disorder. Trying to help folks deal with it.

 

[gritsar]

Dawn, I understand what you're saying. The last time I was at the internal medicine doctor I had a question for him. My DH's mother lived in this house from the time it was built in the 70s until she passed away from kidney cancer in 2005. I moved in here with my dog, Charlie Girl, in '06. A year later I was diagnosed with polycystic kidney disease. In June of this year my Charlie Girl had to be put down to kidney cancer.
All my doctor could tell me is that when he was in medical school, 20+ years ago, they were told if they saw one case of renal carcinoma in their careers it would be considered unusual. Now he sees at least five new cases a year!
Makes me very concerned about my enviroment, but at the same time I can't live in a bubble.