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-   -   Hello Looking for fibro friends (https://www.neurotalk.org/fibromyalgia-and-chronic-fatigue/54596-hello-looking-fibro-friends.html)

warbelsnap 11-13-2008 12:21 AM

Thank you tamiloo...it means the world to us.

hugs right back at you my friend.

Judy2 11-14-2008 03:54 AM

Hi Denise and a late Welcome! I spend most of my time over on the MS board and then run out of energy when I check in here. It's okay reading most of the time, but having to think and respond takes alot of energy -- as you all know!!

Sorry you have to deal with this lousy pain too. I was about your age when I was diagnosed with MS although think it was around since 1976. While on one of the injectable drugs for MS, I developed the fibro and have had constant pain since. My wonderful -- NOT -- list of ailments is: mitral valve prolapse, atrial fibrillation, gerd, arthritis, fibro and secondary progressive MS. My legs no longer work so am in a powerchair all the time. Still live alone with my little Bichon Frise, Tasha, but have some great friends who help out alot. I'm now 65, divorced, three grown "kids" and six grandkids. I love them dearly but can only take the noise, commotion, etc., for one day at a time. Had to sell my car this year since I can no longer get in with my legs being so stiff let alone use the pedals. Thought about getting a minivan that I could "roll" into and learn to use hand controls, but after much thought, felt it would take too much energy for the amount I'd use it.

As somebody said, this cold, damp weather is really doing a number on the fibro. Are you weather sensitive? Usually I can tell about 12 hours in advance of a storm coming this way. Lately I've been trying to fight the extreme fatigue. Seems like all I do is sleep, go to the bathroom, eat and go back to sleep again. Certainly didn't imagine these "golden years" turning out like this! Stuck in the house most of the time.

Hope you're having as good a day as possible and hope to get to know you better. Take care! :)

Kathy90277 11-16-2008 11:41 AM

Hi Denise and other Fibro Friends -

As you can see from my signature, I have Fibro as well. Don't have RSD though. Thank goodness! I don't need anymore ailments. Ha!

I completely understand how you feel Denise. To be very honest, my childhood chums are not very understanding of my chronic illnesses. They do not want to understand. I get along better with people who are dealing with the same things I am dealing with. I have a few friends who do have chronic illnesses and we talk and try to lift each others spirits. I also have two wonderful friends (ex-coworkers) who are extremely supportive. We all need friends and I am very glad I found this forum.

I'm 55 yrs old, married 21 yrs and I have a daughter from my first marriage. I also have two grandchildren. My granddaughter lives with us. She will be 16 in April. When her parents moved to another city she did not want to leave her friends and school so she is living with us during the week and goes home on weekends.

I deal with pain 24/7 and I am on a heavy narcotic. I am having surgery on Dec. 2nd on my back. They will be removing a diseased disc and putting in a cage. I have curvature at that same area that does not help matters. Hopefully the surgery will help with the pain I deal with in my lower back and right leg. Keeping fingers crossed.

My fibro pain is the pitts. I feel like someone has hit me all over my body. Just punched at me.

I live in Redondo Beach, CA by the way. I am happy to meet you as well as the other posters on this thread. Keep your chin up and watch a funny movie. Funny movies always put me in a better place for some reason.

Here's a :hug: for you and everyone else. Have a good day today and I look forward to getting to know you and everyone else here.

Kathy

warbelsnap 11-16-2008 02:55 PM

Welcome Kathy. Sorry to hear about your pain. We here on the board do understand and are friends from the very beginning. We all have something in common. We are always here.

Kathy90277 11-16-2008 04:02 PM

Quote:

Originally Posted by warbelsnap (Post 409218)
Welcome Kathy. Sorry to hear about your pain. We here on the board do understand and are friends from the very beginning. We all have something in common. We are always here.

Hi warblesnap - Thank you very much.:)

Dmom3005 11-16-2008 06:46 PM

NOt sure I've posted on this thread.

But I'm Donna and I have fibro and some other issues. I've been dealing
with my asthma and probably broncitis lately so being online hasn't been
as much. But my fibro comes and goes thanks to the fact that my
other issues sometimes in the pain area, take over.

I'm just trying to understand what all is involved.

Donna

Lara54658 11-16-2008 07:29 PM

thank you for sharing...
 
Hello,

My name is Laura and I was diagnosed with fibromyalgia in October 2008. It's been a shock and I read that it presents with trauma and infection -- both are true in my case.

I am interested in the fact that you state that "For years I looked for all kinds of things that could be causing my problems.In the last 5 years I have been to so many doctors I lost count.I have been diagnosed with RSD, Fibromialgia (which I dismissed immediately big mistake on my part) , Arthritis, Mitral valve prolapse,tackycardia, osteoporosis,Stomach ulcer,
IBS ( I think it's because of the meds I take)Anziety and probably a few others I can't think of now as my memory is not what it used to be."

I hear that my diagnosis is a "syndrome" so my pain sensitivity will not go away and neither will my exhaustion. You have successfully raised 4 children. You provide me courage. I ask you whether the pain and exhaustion in your life fluctuates given what you focus on. Mine does.

This fluctuation of perception leads me to believe at times I do not have the disease. I have difficulty focusing on my health and realizing that I am in a ill human body that others depend on to function -- including me!? Is this what happens with you at all?

I, too, was brought up to "get over it.Pull myself up by the boot straps, you know think right, act right and you will be alright.Mind over matter". I accept a spiritual aspect of this and the gift of knowing how human all of us are at times...but then I distance myself. I am so scared that now I cannot live the life I envisioned for myself; I am scared of "me".

But I do not stay this conscious at all times and fell when I read your statement "well I guess I am here today to admit that I need help." I live in rural WI, and I just moved here so it is hard to introduce myself and then have so many needs to want to "complain" about (health insurance that doesn't pay, dearth of deep friends, lack of interesting interactions). I would prefer to be in a position of giving.

I just contacted someone outside the home (for involvement in something called "Lifeline" that allows ill and elderly individuals to remain in their homes). I want to start volunteering, and perhaps obtain a paid position with health insurance. But its hard due to the fact that I don't want to see myself as so ill and vulnerable; I am married to someone who has MS and I am 39. This is all their is.

I am lucky to be able to participate in this community and hear of someone else's life who suffers similarly. Your post reminds me that I am human and OK.

Your note added something to my life because it encouraged me to acknowledge that I am not alone in wanting to disown this disease And that fear given vulnerability remains normal. I wish you continued energy to provide such a beautiful gift of emotional exchanges.

Take care and good luck! You are an incredibly special woman.

Laura

warbelsnap 11-16-2008 09:04 PM

Welcome Laura. And you are not alone. My name is Betty. I was diagnosed with Fibro and other things between May 2008 and Aug 2008. It is okay to ask for help when you need it. I have never been one to ask. If it can be done, I'd do it myself. That is just the way I have always been. Unfortunately, I had to leave a job I loved and enjoyed because of the pain. My rhuemi is still trying to find the right combo of meds to make the pain somewhat bearable to where I don't have to take so many narcotics during the day. I've also learned that you can only do what you can do and you have to take it one day at a time. Nothing more, nothing less. On one of the other posts, I stated we are survivors everyday that we get up even if we accomplish something or not. We have all been dealt a crappy hand physically in life. Just do what you can. When you get down, the pain gets really bad, or just feel alone, come and talk to us. We are all in this together. We do understand. I've come to think of this board as another part of my family that I rely on. Sometimes I don't get on for weeks, and then other times I'm on it everyday, several times a day. I am sorry that you are having to go through this. Please remember you have family here and we are always willing to listen and do what we can. Welcome and good luck with the volunteering. I do hope it works out for you. Please keep in touch with us.

Denise R 11-16-2008 11:42 PM

hi Donna
 
Quote:

Originally Posted by Dmom3005 (Post 405040)
I dont know anything about RSD but I am learning more and more about
Fibro. And I am not liking what I'm learning.

I have had the worse few days, about 10 days ago, I started getting
a sinus type feeling, but knowing it wasn't a infection yet. I just
moved along. I had fell and have 3 stitches in my knee on Wednesday
the 29th of October, and have a broken finger. So then this last
Wednesday I lost my voice and finally started to get it back yesterday.

And have been coughing my head off. I have presdnone left from the
last infection so am finishing it and doing nebulizer treatments. Trying
to keep breathing. But if I dont get lots better soon will need a doctor.

Donna

Hi Donna ,
Boy you have had a rough time of it.I hope are feeling better soon.
I found that when I cut dairy out of my diet I no longer needed the nebulizer or the inhaler.It took several weeks of no dairy to realize that I am now senstive to dairy and for me it it was very hard to accept .I would try some every few weeks but all the problems came back right away then went away when I stopped dairy,I have done this at least 6 times because I just could'nt accept that something that never bothered me does now.
I have also discovered that soy and wheat bring on as flare as well .
Take Care Denise

Denise R 11-16-2008 11:55 PM

Quote:

Originally Posted by Kathy90277 (Post 409122)
Hi Denise and other Fibro Friends -

As you can see from my signature, I have Fibro as well. Don't have RSD though. Thank goodness! I don't need anymore ailments. Ha!

I completely understand how you feel Denise. To be very honest, my childhood chums are not very understanding of my chronic illnesses. They do not want to understand. I get along better with people who are dealing with the same things I am dealing with. I have a few friends who do have chronic illnesses and we talk and try to lift each others spirits. I also have two wonderful friends (ex-coworkers) who are extremely supportive. We all need friends and I am very glad I found this forum.

I'm 55 yrs old, married 21 yrs and I have a daughter from my first marriage. I also have two grandchildren. My granddaughter lives with us. She will be 16 in April. When her parents moved to another city she did not want to leave her friends and school so she is living with us during the week and goes home on weekends.

I deal with pain 24/7 and I am on a heavy narcotic. I am having surgery on Dec. 2nd on my back. They will be removing a diseased disc and putting in a cage. I have curvature at that same area that does not help matters. Hopefully the surgery will help with the pain I deal with in my lower back and right leg. Keeping fingers crossed.

My fibro pain is the pitts. I feel like someone has hit me all over my body. Just punched at me.

I live in Redondo Beach, CA by the way. I am happy to meet you as well as the other posters on this thread. Keep your chin up and watch a funny movie. Funny movies always put me in a better place for some reason.

Here's a :hug: for you and everyone else. Have a good day today and I look forward to getting to know you and everyone else here.

Kathy

Hi Katy,
I love the idea of a fuuny movie. What do you like?

I will be praying for you on the surgery date I hope it helps.

My dughter lives in Glendale CA

WOW the fires are so scarry I hope you and all your loved ones are safe!
Denise:hug:


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