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Fibromyalgia

Posted by john h on 12/07/02 at 10:46 (102074)

Some have posted on the board they have fibromyalgia. I thouht a letter to the editor in our local paper might be worth posting. Just replace Fibromyalgia with PF and it might still be appropriate:

'To most people, I look like a normal, everyday person. But this disease, firromyalgia, has taken over my body.

I have been very blown away by the number of people who have it, some more severely than others.Mine, of course, has to be the worst. When your doctor says, 'I don't understand why you are hurting so much, more than my other FM patients,' I think, 'could it be because God has made us all different, and do I have the right doctor?'

People are just not educated enough on this. The signs and symptoms include widespread muscle pain. There are 18 different trigger points including headaches, abdominal pain,bowel problems, bladder spasms, cramps and dizziness, all of which I have.

The sad part of this whole mess is that there is no test to help diagnose this crazy disease, yet it is so life-altering. My hope is that not only will you print this in our paper, but that there might one day be more information on it. those of you who have any of these symptoms, don't hesitate to ask your doctor. I was being treated for several different things for years and have just in the last two months been diagnosed.'

Re: Fibromyalgia

Kathy G on 12/08/02 at 10:26 (102222)

Thanks for the article, John. I have been diagnosed with Fibromyalgia but I don't tell people, other than those on these boards, that I have it. It's one of those conditions that people don't understand and many, including me, tend to consider people with it as being dramatic hypochondriacs because so many are! For me, the diagnosis didn't really change anything. I've been this way since I was about sixteen. I take the 20 mg. of amitriptyline at bedtime they recommend and I just kind of go my merry way.

There are many message boards and support sites for people who have it. My neice, who has it, frequents them but I avoid them because, judging from her, they seem to foster self-pity. I think you could become obsessed with the condition and it could take over your life. They also encourage much more exercise than I can do because of my feet and it would just make me more frustrated! I have no doubt that since I had to give up regular exercise, my fibro is worse.

I must admit that I get tired of having tendonitis in my hand and my shoulder, muscle spasms in my back and sore feet. There are days it takes all my willpower not to just sit down and give up. But, luckily for me, it's not a new condition and I'm used to it. I'm just very thankful that I don't have Rheumatoid Arthritis to which Fibro is closely related. AIDS research has helped people with rheumatoid arthritis, multiple sclerosis and fibromyalgia because they are all auto-immune disorders. In time, they will probably have a cure for this class of diseases.

Re: Fibromyalgia

john h on 12/08/02 at 11:22 (102232)

Kathy: i cannot imagine how you face each day with fibro. Bad feet are enough for most of us to handle. You got to be one tough lady.

Re: Fibromyalgia

Barbara S on 12/09/02 at 09:54 (102337)

Yes, Thanks for the article John. I too was diagnosed with fibromyalgia over 5 years ago after years and years of test that always came back negative. I thought I was losing my mind. I knew my pain was real,but the doctors could find nothing wrong. Then the trouble with my feet started 2 years ago and I thought GOD NOW WHAT.
I have had EPF surgery (Nov 20 2001) and a Tarsel Tunnel Release (April 22 2002).
I don't post much,but I read here to get info on getting better. I do Julie's stretches several times a day. I am slowly getting better,but still have numbness,tinkling,in my toes and heel and acheyness in my ankle area.
Thank goodness for my orthotics as I wouldn't be getting around otherwise. I just recieved my SDO's from Dr. Kiper. I want to try these as I still have tenderness in the arch area towards the heel and I'm hoping these will help that.
I've had such a hard time with recovery. I never thought I was going to get better. I lost my job,of 25 yrs.,in August. I have an attorney working for me and hope to hear some good news before the end of the year.
Thanks again. Take care and God Bless all of You. Barbara S. (Milw, Wi)

Re: Fibromyalgia

dave r on 12/09/02 at 12:36 (102358)

Hi barb i am from Milwaukee too. i hope your attorney helps you!

Re: Fibromyalgia

Kathy G on 12/09/02 at 17:59 (102416)

Barb,

I'm happy to hear that you're making progress. You've had more than your share of physical problems.

It must have been so hard to lose a job that you'd had for such a long time. I hope your attorney wins your case and you can either get your job back, if that's what you want, or move on with your life.

I'll be thinking of you!

Re: Fibromyalgia

Kathy G on 12/09/02 at 17:59 (102420)

Barb,

I'm so glad you're making some progress. It must have been so hard to lose your job, especially one you've had so long. I hope your attorney can help you and that you can move on with your life. Sounds like you've had more than enough problems!

Take Care!

Re: Fibromyalgia

Kathy G on 12/09/02 at 18:00 (102423)

Well, I have no idea what happened. The first message wouldn't load and then I got a message saying the Website wasn't responding and now there are three messages from me. I guess I just wanted to be emphatic!

Now, I wonder what will happen this time?? :)

Re: Fibromyalgia

Barbara S on 12/09/02 at 20:18 (102441)

Thanks Kathy I hope to either get my job back or be able to retire with full benefits. One of my Doctors was out of the country for the month of Nov. so that kind of held things up. I'm hoping to hear by the end of the year.
Take care.
Barbara S.

Re: Fibromyalgia

Kathy G on 12/08/02 at 10:26 (102222)

Thanks for the article, John. I have been diagnosed with Fibromyalgia but I don't tell people, other than those on these boards, that I have it. It's one of those conditions that people don't understand and many, including me, tend to consider people with it as being dramatic hypochondriacs because so many are! For me, the diagnosis didn't really change anything. I've been this way since I was about sixteen. I take the 20 mg. of amitriptyline at bedtime they recommend and I just kind of go my merry way.

There are many message boards and support sites for people who have it. My neice, who has it, frequents them but I avoid them because, judging from her, they seem to foster self-pity. I think you could become obsessed with the condition and it could take over your life. They also encourage much more exercise than I can do because of my feet and it would just make me more frustrated! I have no doubt that since I had to give up regular exercise, my fibro is worse.

I must admit that I get tired of having tendonitis in my hand and my shoulder, muscle spasms in my back and sore feet. There are days it takes all my willpower not to just sit down and give up. But, luckily for me, it's not a new condition and I'm used to it. I'm just very thankful that I don't have Rheumatoid Arthritis to which Fibro is closely related. AIDS research has helped people with rheumatoid arthritis, multiple sclerosis and fibromyalgia because they are all auto-immune disorders. In time, they will probably have a cure for this class of diseases.

Re: Fibromyalgia

john h on 12/08/02 at 11:22 (102232)

Kathy: i cannot imagine how you face each day with fibro. Bad feet are enough for most of us to handle. You got to be one tough lady.

Re: Fibromyalgia

Barbara S on 12/09/02 at 09:54 (102337)

Yes, Thanks for the article John. I too was diagnosed with fibromyalgia over 5 years ago after years and years of test that always came back negative. I thought I was losing my mind. I knew my pain was real,but the doctors could find nothing wrong. Then the trouble with my feet started 2 years ago and I thought GOD NOW WHAT.
I have had EPF surgery (Nov 20 2001) and a Tarsel Tunnel Release (April 22 2002).
I don't post much,but I read here to get info on getting better. I do Julie's stretches several times a day. I am slowly getting better,but still have numbness,tinkling,in my toes and heel and acheyness in my ankle area.
Thank goodness for my orthotics as I wouldn't be getting around otherwise. I just recieved my SDO's from Dr. Kiper. I want to try these as I still have tenderness in the arch area towards the heel and I'm hoping these will help that.
I've had such a hard time with recovery. I never thought I was going to get better. I lost my job,of 25 yrs.,in August. I have an attorney working for me and hope to hear some good news before the end of the year.
Thanks again. Take care and God Bless all of You. Barbara S. (Milw, Wi)

Re: Fibromyalgia

dave r on 12/09/02 at 12:36 (102358)

Hi barb i am from Milwaukee too. i hope your attorney helps you!

Re: Fibromyalgia

Kathy G on 12/09/02 at 17:59 (102416)

Barb,

I'm happy to hear that you're making progress. You've had more than your share of physical problems.

It must have been so hard to lose a job that you'd had for such a long time. I hope your attorney wins your case and you can either get your job back, if that's what you want, or move on with your life.

I'll be thinking of you!

Re: Fibromyalgia

Kathy G on 12/09/02 at 17:59 (102420)

Barb,

I'm so glad you're making some progress. It must have been so hard to lose your job, especially one you've had so long. I hope your attorney can help you and that you can move on with your life. Sounds like you've had more than enough problems!

Take Care!

Re: Fibromyalgia

Kathy G on 12/09/02 at 18:00 (102423)

Well, I have no idea what happened. The first message wouldn't load and then I got a message saying the Website wasn't responding and now there are three messages from me. I guess I just wanted to be emphatic!

Now, I wonder what will happen this time?? :)

Re: Fibromyalgia

Barbara S on 12/09/02 at 20:18 (102441)

Thanks Kathy I hope to either get my job back or be able to retire with full benefits. One of my Doctors was out of the country for the month of Nov. so that kind of held things up. I'm hoping to hear by the end of the year.
Take care.
Barbara S.