Fibromyalgia Support Group

Hello:

My name is Mimi or Patty, I go by both. I found this site through a disabilities network and already I can see it is filled with help from members.

I am scared. I'm afraid I'm going to lose my job and health care. I had Lap Band surgery beginning at 402 lbs. My problems, I was told, were all weight related.

I lost 80 pounds when I woke up with severe pain in my back and difficulty moving. The conclusion to that was a finding of degenerative spine, compressed vertabraes, scoliosis in the top and bottom of my spine and spondylethesis, my spine shifts out of alignment when I bend over.

I saw a pain management doctor and the morphine helped, I am still on it. Out of the blue, in May, I woke up foggy headed. I couldn't think clearly and oddly my pain was all over. I had tingling in my skin and progressively the symptoms grew.

I came into the doctors office in a full blown flair and could barely talk or answer his questions. The other doctor examined me as well and one hour later they told me I had Fibromyalgia. I began Savella.

Then Skelaxin. The meds have helped but my absence from work atleast three to four times a month tells me I won't be rehired next year after ten years.

I work with disabled children. My daughter had JRA, Juvenile Rhumetoid Arthris, my son was born a premie and has a learning disability, hearing impairment and some cognitive concerns. SO I trained to be an advocate for children with disabilities.

Now I find myself with my own name on my notes.

I am scared.

I am worried.

Part of me feels like I have lost value. I have told my husband I feel worthless. I spend days in bed. It is the only relief I get 98 percent of the time.

I have felt suicidal even planning out what I would say in my notes.

So the process of acceptance , when do you say "I am a disabled person." I have the blue tag for my car, I have the fist full of meds, my body tells me daily. But when do you say 'it's time?"

I would really like to know. I am a fighter and the past five years have been insane.

Anyone?

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Welcome to the group! I am so glad you have decided to join us. It is very supportive here. You will meet many friends. If you ever feel suicidal you need to go to the hospital immediately it is so serious please dont take it lightly. I also hurt all over, I suffer from many health issues and sometimes cant differentiate between my symptoms but pain is pain so I just treat that the same. I hope you find more relief for that. When you can no longer work you can say the words "I am disabled" there is no shame in it, nobody that truly cares about you will judge you. Keep posting, you are not alone here. We all relate to your pain and suffering. Gentle Hugs, Stacey

Welcome to Fibro Group, Mimi!

I agree with Stacey. If you feel suicidal, get to the ER immediately. Before you're feeling suicidal, look in the front of your local phone book for your nearest crisis center hotline and keep the number handy give them a call and tell them what you're feeling. This is in case you're having too much pain and cannot get to the ER. At the Crisis Hotline They are there for you, to help you through a rough time.

Everyone has a different idea of "when its time" for disability. We all have our own threshold. When you feel its time in your heart of hearts, then that's when its time for you.

There is no right or wrong here. You do what you need to do to help yourself and your family. Only you know how you feel. However, your doctors can help you make your decision based on your various medical conditions.

Know that you're not alone and we're here to help encourage you!

Welcoming Hugs,

Sonni

Post edited by: Sonni, at: 01/09/2010 09:31 PM

Thank you for the welcome Miss Stacey I would enter myself into a facility I know of before harming myself. My children would be devistated and it's my love for them that keeps me going.

There is no right or wrong here. You do what you need to do to help yourself and your family. Only you know how you feel. However, your doctors can help you make your decision based on your various medical conditions.-Sonni

Sonni I appreciate the meaning of that and it is very inviting to know that all are accepted no matter where they are at or their condition.

I thank you both Miss Stacey and Sonni. Your reply is appreciated.

It isn't by choice I left my job, I simply cannot get up and get out the door. My limbs do not cooperate.

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Does anyone understand that? Has anyone had a sluggish if not total non function of your body where you cannot imagine driving to work let alone being in a place standing or sitting for 8 hours?

I think we can ALL relate to that feeling Mimi. I know understand it, alot of the days of my life. I dont work and no longer drive but understand the sluggish non functional feeling and def could not imagine having to work or be required do anything else for that matter.

Hello, Mimi, & welcome to the family! I'm so glad you found us! This is an awesome place for friendship as well as support. Here, we understand your concerns, your worries, your fears, and your pain.

I am so sorry you have endured such obstacles in your life. I applaud you in taking the steps to improve your quality of lifeby having your surgery. I am also sorry that you have developed this disorder. It will make you feel woorthless, & @ times, suicidal. PLEASE, if you are feeling that way again, find someone you trust to talk to, seek counseling, or check yourself in somewhere, as Stacey said earlier.

We care here. You can send a pm anytime you need to talk privately.

I will be praying for you, my dear. That your pain levels lower, & you can feel somewhat normal again.

There are many other groups on this site that are so wonderful and supportive that would be able to help you along with us. Many of us are part of multiple groups. There are groups for Parents with children with certain disabilies you could check it out and see if any fit your specific needs and see if you can meet people that relate to that as well, I am Bipolar myself I dont know if your suicidal thoughts were from that or depression you didnt specify but we have a group for both and they are both wonderful. I am part of the Bipolar II Group. If you are not Bipolar there is the Depression Group and they are great over there as well very supportive, they can help you through your rough patches. There is even a group for Social Security Disability where people talk about social security, the process and you can get alot of advice. Anything else you deal with the site probably has a group for it. At the top of the screen click Online Support Groups and they are all listed in Categories if you are looking for something specific just click the first letter of the name of the illness and the list will come up. We will always be here for you no matter what with whatever you are dealing with, you are one of us now but I just wanted to let you know you have options to meet more people going through the same issues as yourself. Big Gentle Hugs, Stacey

Post edited by: MissStacey, at: 01/09/2010 10:47 PM

Welcome Patti,

I am sorry you need to be here but since you have the need I am glad you found us.

I have been struggling with the disability issue myself during the last 6 months. For me it was if I said I was disabled I was broken and of no use any more. It took me a full 5 months to come to terms with the fact that being disabled does not been either of those things. It is simply standards set by social security. I am dyslexic so for all itents and purposes I have been disabled my whole life. Only no body told me so I learned to work around the dyslexia. I by the time I got out of school, I read faster than anyone I know, I just needed to read everyday to keep my couping mechanizisms sharp. That is how I look at fms I just need to have sharp couping skills.

Most everyone here seems to have gone thru some type of acceptance process and it certainly helps to share it with others who have been thru the same thing.

Traci

Post edited by: puppymom2, at: 01/09/2010 11:31 PM

Shamarie6 thank you for the lift. At the time I had the Lap Band sugery, I really felt I was saving my life. I didn't finish by telling you all i have gone on to lose another 143 pounds. I do feel lighter, walk longer but that pain, that all over pain still comes if not worse than when I was big. I can just move easier, breath easier and I cannot imagine life had I not taken the leap into Lap Banding.

MissStacey posting those links like you do really helps. I'm sure some things are old hat to many but for us newbies we have to hunt around to find the stuff. I so appreciate your thinking ahead and posting links and even directions on how to get there. Thanks as that helps so much