[debbie1700]

Ro, on Feb 3 2006, 11:39 PM, said:

Hi Debbie - just read above. I've given pretty complete details about what I'm taking up there. It is the December 30ths post.

Hope that helps!

Big HUG
<{POST_SNAPBACK}>

Thank you. I wrote down a bunch of stuff. Then went to the link in the message with the website about Fibro. Wow! I definitely fit the profile. I've also been on a lot of the meds that are listed. Some helped and some didn't. Will definitely talk to my Doc tomorrow about it all.

Thanks so much!

Debbie (New Mexico)

[deannayh]

I was diagnosed in December of 1998 with

LUPUS-SLE
(Lupus is one of many disorders of the immune system known as autoimmune diseases. In autoimmune diseases, the immune system turns against parts of the body it is designed to protect. This leads to inflammation and damage to various body tissues. Lupus can affect many parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels, and brain. Although people with the disease may have many different symptoms, some of the most common ones include extreme fatigue, painful or swollen joints (arthritis), unexplained fever, skin rashes, and kidney problems.

At present, there is no cure for lupus. However, lupus can be effectively treated with drugs, and most people with the disease can lead active, healthy lives. Lupus is characterized by periods of illness, called flares, and periods of wellness, or remission. Understanding how to prevent flares and how to treat them when they do occur helps people with lupus maintain better health. Intense research is underway, and scientists funded by the NIH are continuing to make great strides in understanding the disease, which may ultimately lead to a cure.)
http://www.niams.nih...pus/slehandout/




Sjögren's Syndrome
(Sjögren's syndrome is an autoimmune disease in which the body's immune system mistakenly attacks its own moisture producing glands. Sjögren's is one of the most prevalent autoimmune disorders, striking as many as 4,000,000 Americans. Nine out of ten patients are women.

About 50% of the time Sjögren's syndrome occurs alone, and 50% of the time it occurs in the presence of another connective tissue disease. The four most common diagnoses that co-exsist with Sjögren's syndrome are Rheumatoid Arthritis, Systemic Lupus, Systemic Sclerosis (scleroderma) and Polymyositis/Dermatomyositis. Sometimes researchers refer to the first type as "Primary Sjögren's" and the second as "Secondary Sjögren's." All instances of Sjögren's syndrome are systemic, affecting the entire body.

The hallmark symptoms are dry eyes and dry mouth. Sjögren's may also cause dryness of other organs, affecting the kidneys, GI tract, blood vessels, lung, liver, pancreas, and the central nervous system. Many patients experience debilitating fatigue and joint pain. Symptoms can plateau, worsen, or go into remission. While some people experience mild symptoms, others suffer debilitating symptoms that greatly impair their quality of life.)
http://www.sjogrens.org/syndrome/




Rheumatoid arthritis
(Rheumatoid arthritis is an autoimmune disease that causes chronic inflammation of the joints. Rheumatoid arthritis can also cause inflammation of the tissue around the joints, as well as other organs in the body. Autoimmune diseases are illnesses which occur when the body tissues are mistakenly attacked by its own immune system. The immune system is a complex organization of cells and antibodies designed normally to "seek and destroy" invaders of the body, particularly infections. Patients with these diseases have antibodies in their blood which target their own body tissues, where they can be associated with inflammation. Because it can affect multiple other organs of the body, rheumatoid arthritis is referred to as a systemic illness and is sometimes called rheumatoid disease.

While rheumatoid arthritis is a chronic illness, meaning it can last for years, patients may experience long periods without symptoms. Typically, however, rheumatoid arthritis is a progressive illness that has the potential to cause joint destruction and functional disability.)
http://www.medicinen...tis/article.htm




FIBRO-fibromyalgia syndrome (FMS)
(FMS (fibromyalgia syndrome) is a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the muscles, ligaments, and tendons – the soft fibrous tissues in the body.
Most patients with FMS say that they ache all over. Their muscles may feel like they have been pulled or overworked. Sometimes the muscles twitch and at other times they burn. More women than men are afflicted with FMS, and it shows up in people of all ages.
To help your family and friends relate to your condition, have them think back to the last time they had a bad flu. Every muscle in their body shouted out in pain. In addition, they felt devoid of energy as though someone had unplugged their power supply. While the severity of symptoms fluctuate from person to person, FMS may resemble a post-viral state. This similarity is the reason experts in the field of FMS and chronic fatigue syndrome (CFS) believe that these two syndromes may be one and the same. Gulf War syndrome also overlaps with FMS/CFS.)
http://www.fmnetnews...ges/basics.html



And several smaller fun things that are just too long to post or even spell, lol


deanna

[deannayh]

Quote

deannayh,Mar 8 2006, 10:32 PM
I was diagnosed in December of 1998 with

LUPUS-SLE
Sjögren's Syndrome
Rheumatoid arthritis
FIBRO-fibromyalgia syndrome (FMS)
And several smaller fun things that are just too long to post or even spell, lol

deanna

OK, that post was way too long.

This is the more personal version.

LUPUS-SLE
The more annoying of them all. The dominate one. The one that seems to dictate what I can and get to do on an hour by hour basis. The one my doctors have me running to the lab every week to check my stats. Currently my plateletts are back up! (If you are not familiar with these little wonders, they are the things that cause your blood to clot if you cut yourself-so you do not bleed to death. They are very important. The thyroid is being attacked again, and the liver is being very closely watched.

Sjögren's Syndrome
This one drives my crazy. I have spent over $1000 trying different contact lenses before I found out I cannot wear them. I need to drink liquids 24/7. All through the night I wake up to drink more water and pee, how lovely. It affects the digestive system in not so wonderful ways as well. However, I do not sweat as much as most people and this is very nice as a girl!


Rheumatoid arthritis
Most people know what this is. It's painful and annoying. My mom and I try to go swimming twice a week whenever possible. It is the only thing I can do. Gotta keep moving! I'm afraid if I stop, I will seize up completely and end up living like a 99 yr old at age 35. (I was diagnosed young)


FIBRO-fibromyalgia syndrome
Lots of talk about this on the board. You seem to relate and/or understand it for the most part.


Anyway. I started getting really sick in '96 and just got worse thru "97. I had a wonderful doctor who started in August-October of "97 to figure out what was wrong with me. It took over 14months. In December of 1998, I was sent to an autoimmune specialist. He figured out all of the above.

I am fortunate to have a very well known Dr. in this area and he is wonderful. God help me if he ever retires! (I tell him he's *NOT* allowed to retire until I'm cured, lol)


It has been very interesting to a very active, very outgoing, highly energetic 20 something, who believed her entire life that "I can do anything if I just work hard enough" (I might have been accused of being a Hufflepuff, but I'm too much a Gryffindor, with the mind of a Ravenclaw --sorry, Harry Potter reference)

Well, let me tell you, when your entire identity is wrapped up in being a hard worker, a creative worker and someone who is *ALL* about the details...it takes some getting used to the thought that I cannot just "work harder" to get there. I was so incredibly proud about being so independent. Wow, was that a lesson!


Thank God I have a wonderful supportive family and significant other. I would not have made it to where I am now if it weren’t for them. I used to be the rock that everyone could count one. I can't tell you how grateful I am that I now have "rocks" that I can count on. (I probably always did, but I never gave anyone a chance to prove it before, because I always had to “do it myself”.)

I have learned…
…that my days of snow skiing downhill on the double black diamonds and floating down a mountain in 5 feet of powder are over, but I can certainly meet people up at the lodge for a fabulous lunch and even better view.

…I cannot be the famous graphic designer living the ultimate and hippest loft in New York, but I can teach rubber stamping, book making, paper making, scrapbooking (and soon, hopefully digital scrapbooking) to anyone who wants to know.

…The spur of the moment, hop on the Goldwing and ride for days or even the weekend dirt bike riding trips with my honey and friends are out, but, I can enjoy new hobbies with my honey. He has found an interest in remote control airplanes/helicopters. That new helicopter actually looks like fun. We can do that together.

…Traveling around the world, climbing Mt Everest, Walking the tiny cobblestone streets of Toledo, Spain and biking thru Amsterdam are not in my future. (I always had to be physically active. I get bored easily and had to keep moving or I went crazy!) I do have precious memories of Spain, Germany (twice), Austria, Czechoslovakia (now the Czech Republic and Slovakia), Mexico (twice) and most of the USA due to a traveling fetish before I got sick. And I did get to climb Mt St. Helens at least. Mt Hood was next, but then I got sick.

I do have 3 traveling dreams left before I die:
1. Italy. All of it, but more time in Tuscany.
2. London, and other areas of England
3. New York City at Christmastime
I don’t like to do just the tourist stuff in a new country. I like to completely immerse myself in the culture and learn everything I can about the country, the lifestyle, the food, the locals hot spots, etc. So when I go, it’s never less than 2 weeks (and let me tell you, I’d rather be there 6 months or more)


The point is, you redefine yourself. You find new joys in life and keep moving, keep hoping, keep learning, keep trying…

You make a new life, Hope for a new future and Live like this very moment might be last good one you have for a long time, so enjoy it!


deanna
(sorry so long...I guess I got a roll, lol)

[deannayh]

Quote

crljean,Dec 30 2005, 05:27 PM
I was sent to a rheumatologist who said, "You have Fibromyalgia but it's no big thing. I wouldn't think about it too much!" That's it! I don't suppose he would "think about it too much." HE doesn't have it!

I agree with Ro, He should be shot! (with the actual disease--then he might have some understanding and sympathy)

deanna

[deannayh]

Quote

Ro,Dec 30 2005, 06:15 PM
According to Dr. Smith, they have a theory (which makes sense) that Fibromyalgia is the brain mistaking everything as a pain signal. This is why usual pain meds like aspirin and tylenol are worthless to you. And this is why it hurts to be touched, or rubbed or sometimes, even a warm bath kills you off. Your brain thinks that all of these things are causing you pain.

People keep saying to get a massage or go to a Chiropractor. I can't stand anyone touching my skin, much less rubbing it very hard. I think I would go through the roof from the pain. How do you stand being touched?


deanna
(who is cringing at the thought)

[deannayh]

Quote

Ro,Dec 30 2005, 06:15 PM
Along with my sleep meds (which I seriously have to take or I'm a mess - I have to have Ambien - regular old Ambien because Ambien CS doesn't work for me... I also take half a tablet of Trazedone, too. The Ambien gets me to sleep. The Trazedone keeps me asleep.

I have taken both of those. Whatever you do, Do NOT STOP the Ambian, unless you stop *VERY* gradually. I had horrible headaches and was violently ill both times I tried to go off of it, even though we thought we were "stepping down" gradually. It lasted for approx 4-5 days each time. I personally will never take Ambien again.


deanna

[deannayh]

Quote

raynedrop,Dec 31 2005, 02:05 AM

I have  FM, CFS, Lupus, RA, OA, RLS and a host of other lovely visitors in my bod that I cannot seem to kick out 

Me too! Along with Sjogren's, but minus the OA. Guess we got the supersized combo deal

Quote

but it TOOK TIME to find ones who listened to me!

I know. People keep telling you it's just in your head. You're just stressed. WRONG. Listen to your body. You *know* when something is wrong. Keep insisting that is not normal for you and they need to figure out what is going on. It took the Dr's 14 months to figure mine out.

Quote

The bad days sure do wreck havoc with our lives don't they! Unfortunately I have more bad than good but they keep playing with meds and treatments when one doesn't work they don't just poo poo me at least!

As your body changes, the other stuff has to change too.

Quote

I held a full time well paid job ... working 14-18 hour days was normal for me! That was until a blasted virus literally knocked me on my butt ...

I was working 3 jobs at the time and training to climb Mt Hood. I understand.

Quote

I am lucky I was able to get disability so now at least financially I am ok..it pays the rent lol.

barely. but better than nothing right?

Quote

My digital scrapping is my ONE sanity that makes me feel like I can still do things.

That and altered books, scrapping, rubber stamping, bookmaking, etc.

Quote

I have a poem around here someplace ... If you want that poem please holler and will hunt it out for anyone that wishes it..Raynedrop

I would love a copy of the poem!


deanna

[gdsjoy]

I have been having a terrible spell with my fms for the past nine months. I think I'm sending my physician into a depressive state with my case!

So Ambien really helps? I haven't found much of anything that is helping, and kinda getting sick of hearing the silly things people tell me to try. But, don't mind hearing it if I ask, and if I am talking to someone who has been there. Know what I mean?

[deannayh]

gdsjoy, on Mar 10 2006, 10:27 PM, said:

I have been having a terrible spell with my fms for the past nine months.  I think I'm sending my physician into a depressive state with my case! 

So Ambien really helps?  I haven't found much of anything that is helping, and kinda getting sick of hearing the silly things people tell me to try.  But, don't mind hearing it if I ask, and if I am talking to someone who has been there.  Know what I mean?
<{POST_SNAPBACK}>

Ro said the Ambien was helping her. I don't know if she has attempted to go off of it yet though. That is scary stuff! I personally try to not take any, unless I really don't have a choice. When I do, I usually take 2 Unisom Sleep Gel Caps (the full 50mg of Diphenhydramine HCI) on an empty stomach. It seems to help me fall asleep. (Staying alseep, well that's another entirely different matter )


deanna

[saddeyezz]

I've had Fibro for about 10 years now, got it after a car accident that screwed up my back. Like you guys, I have good days and bad days. Alot more good days lately since I stopped working for awhile. I take maintenance meds, if I forget my body reminds me.

I used to take Ambien, and didn't have any problems with it, except it would only give me about 2 hours of sleep.... Now I take Elavil, for sleep and also because it tricks your body into thinking it doesn't hurt. That's the explanation the doctor gave me That and some pain meds.

They are right, exercise in moderation does make you feel better. But now I've done something to my heel and it hurts to walk. So that screwed my exercising up. It has hurt for about 2 months now so it doesn't look like its going to go away by itself.

Just another chapter in the neverending story.....

Gloria

[deannayh]

Quote

saddeyezz,Mar 20 2006, 05:28 PM

...They are right, exercise in moderation does make you feel better. But now I've done something to my heel and it hurts to walk. So that screwed my exercising up. It has hurt for about 2 months now so it doesn't look like its going to go away by itself...

Gloria

Swimming is the only thing that works for me. My mom and I try to go together.
If you have a physical therapy note from your Dr., many senior care facilities will let you use their pool where I live. I can go there and know that I am not going to be around swarms of children trying to enjoy themselves as well in a larger public pool.


deanna

[s_k_wilson1990]

I have it along with my hubby and son.

[deannayh]

s_k_wilson1990, on Mar 20 2006, 09:55 PM, said:

I have it along with my hubby and son.
<{POST_SNAPBACK}>

Wow, all 3 of you?
You guys must be really close...and understanding of each other.


Hope you have wonderful fun things you have found to do as a family :-)



deanna

[Cropnpix]

All of you gals are amazing! I've read stuff from a lot of you on the message boards and you would never know what you're having to deal with. I believe my mother has FM and I've printed off these posts in case there is anything in it that can help her (aside from knowing that she isn't alone). God bless all of you for putting one foot in front of the other each day. I'm so sorry that a lot of times, doing that is painful.
Hugs.

[DDecker]

I just clicked on fast reply athough I don't think this will be. I have not been diagnosed with Fibro but my specialist tells me I can be. We know I have a degeneritive nerve disorder. It is very like MS but in the pheripherial nerve system rather than the central. I have the same demylination of the nerves. Unfortunaly that means I have trouble with balance, hot and cold control and touch. I can FEEL every part of my self at all time, and let me tell you it is exausting. The first couple of years I went from the bed to couch and back. I have been better the past few years but am not working again becuase it was too hard physically. On the bright side, I was home for all my DD highschool years and that was wonderful.

I had noticed a few posts where people mentioned in passing that they were having difficult days but was floored to find so many of us are in a similar situation. My DH keeps calling this my therapy time and he has NO idea how right he is.

You all keep me looking forward to the next day and I can't say how much I appreciate everything.

Told you this was not going to be "quick".

[deannayh]

sailbeachcatz177, on Jun 6 2006, 04:42 PM, said:

I just clicked on fast reply athough I don't think this will be. I have not been diagnosed with Fibro but my specialist tells me I can be. We know I have a degeneritive nerve disorder. It is very like MS but in the pheripherial nerve system rather than the central. I have the same demylination of the nerves. Unfortunaly that means I have trouble with balance, hot and cold control and touch. I can FEEL every part of my self at all time, and let me tell you it is exausting. ...

I had noticed a few posts where people mentioned in passing that they were having difficult days but was floored to find so many of us are in a similar situation. My DH keeps calling this my therapy time and he has NO idea how right he is.

You all keep me looking forward to the next day and I can't say how much I appreciate everything.

Told you this was not going to be "quick".

I am sorry about your nerves. That does sound exausting!

You're right about the "therapy" part. I agree COMPLETELY. This place is the BEST!!


deanna

[Cropnpix]

Back in March I told y'all that I was printing off your informative posts about Fibro and giving them to my mom to read. She found so many helpful hints and things to try among your shared information. Thank you very much from her, and from me, for being so great about reaching out with your own stories to help others.

[MaMaCandi]

Wow! I thought I just found a cool sight for scrapping. Fibryo people too this is just what I need.
The news just had this on thought you all might what to look it up. The CDC has just released this information. FMS/CFS is now an epidemic and they are looking more carefuly at it. So Ladys and Gents we are not crazy people.
MaMaCandi

[deannayh]

MaMaCandi, on Dec 7 2006, 01:09 PM, said:

Wow! I thought I just found a cool sight for scrapping. Fibryo people too this is just what I need.
The news just had this on thought you all might what to look it up. The CDC has just released this information. FMS/CFS is now an epidemic and they are looking more carefuly at it. So Ladys and Gents we are not crazy people.
MaMaCandi

Well *we* knew that, lol.
Nice to see that there is actual money being put towards funding research and hopefully finding cures!

I haven't seen anyone really post in this area for a while and was wondering how everyone was doing...kind of a "checking-in" with each other.

What's been going on with your health? Anything helping? Any new breakthroughs or new medications?


Me personally?
I had a rough patch there for a while this year, but I seem to be back on my feet again.
I have been fortunate to be given Enbrel for my RA and it has made a significant difference in both my pain (especially sleeping better at night) and my energy level. I could never afford the $1400/month on my own, but thanks to President Bush's prescription plan, it doesn't cost me a single penny (neither do any of my other meds either) Yeah!

The LUPUS has attacked my thyroid again and I feel very "un-girly" because I have had so much hair fall out, but hopefully we are on our way to getting that under control. *Sigh*, we caught it fast enough, I'm not totally bald at least... and... it'll grow back.

My Sjögren's Syndrome is making very difficult to swallow lately. I am kind of nervous to go in and to be honest, I have been putting it off. I just wanted to have a "FUN" and happy holiday this year...with no bad news or extra worries. I really wanted to put if off until January, but I don't know if I can. It is getting pretty hard to eat my food.

On another note, my mom and I have been able to spend some more time together and I *LOVE* being with her, she's the kind of person I would choose as a best friend, even if I wasn't related to her :-)
We look pretty funny racing through Walmart or Joanne's Fabrics together on matching riding carts, lol. It's even funnier when my gramma (mom's mom) joins us. We are like the 3 musketeers, riding side by side...in 3 electric riding carts of course, laughing the whole time. I don't think Fred Meyer's knows what hit them, lol.


So, what's going on with you?

deanna