Fibromyalgia, and CFIDS CFS ME

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Comment by Mary Warren on November 18, 2009 at 4:10am

I've been away from the Bonnie community for a long time - have even given up most of my on-line activities, including the Fibrohugs.org site - a great site for anyone with or who knows someone with fibro, CFS, MS, Lupus, etc. That site has done me a lot of good over the past year or two & I am happy to find another group here. I have only read the past couple of posts but hope to catch up in here soon.

I'm saddened to learn of Catherine's loss yet glad to know her passing was peaceful - we can't hope for more than that.

Here a bit about me: Fibromyalgia was just diagnosed this year after several years of inability to work and almost four decades of my 46 years with health problems. In my research it seems to have found me at age 7 - just after my elder sister (11 yrs my senior) had mono. Decades of doctors shrugging...test results non-remarkable or within normal limits...missing out on school, work, LIFE...accusations of being a hypochondriac...I was diagnosed with Chronic Fatigue in 1994 & after 8 months I finally was able to return to work very gradually. That was followed by the healthiest, happiest decade of my life which came to a CRASHI!! ing halt September, 2005. I have been unable to work since. In fibro they refer to flares - I don't really have flares. I do fine then CRASH!! out of the blue.It has been triggered by auto accidents, spousal abuse, overwhelming sickness (bad flu, kidney stones, etc), stress, trauma, etc.

I am the sole caregiver for my bedridden mother who is on hospice..My sister was diagnosed with fibro years ago and has diabetes, musculo-skeletal issues, etc. Our mother was a sickly child, born in 1925 & was bedridden long term twice in her youth due to pernicious anemia & then polio. She also had many pretty healthy years but you know how fibro & his buddies are...you are never really out of his grasp.

So far I have had Osteo arthritis for over twenty years throughout my spine, I now have a diagnosis of Zero Negative Rheumatoid Arthritis - a i>milder form of RA that doesn't show in the blood work, Myofascial pain, etc...the list is quite long. It is truly the fatigue that gets me down...I can & have worked through pain (even passing kidney stones at work & driving myself to the hospital after a 12 hr workday on my feet). That's all for now...

Please visit my page to learn a bit more about me & I'll do the same. I'm sure this will be another wonderful place for support as well as information.

Comment by Clarissa Shepherd on November 17, 2009 at 11:00pm

I just want to share some things with you, my friends. Many of you are thinking back to when you first got sick and the cause of it all. From all that I've learned Fibromyalgia can be set off by sickness, emotional stress, accidents and I'm sure many other things. I , however began with CFIDS. I know some of you have this and some of you don't. All Fibromyalgia patients are chronically fatigued. Thats part of the monster. Most of the time, Fibromyalgia comes on over time and worsenes and many are not diagnosed as soon as you should be. With CFIDS ( in most of the cases I've studied) it comes on suddenly. I had no symptoms except that my legs had been weaker than usual for a few days before I collapsed. I came home from work on Aug. 11 1992 and collappsed. My life has never been the same. Many of the CFIDS symptoms are the same as Fibromyalgia except the fact that most CFIDS patients become bed ridden or in a wheelchair .Like me in the early stages, are unable to care for the their everyday needs. You have read my story so you know that I was this way for four years and thats when I did my research. Even after I began to find the things to help me to feel stronger, I would have a sudden onset of a complete loss of energy. Of course , this would sometimes lead to panic. When I was at my worst ( during the four years ) I would have these sudden loss of energy episodes 8 or 10 times a day. Even though I was in the bed , I still had them. I would feel so heavy that I felt as if an elephant was laying on me. Over the years these have lessened and lessened. With all of my supplements, breathing , finding out what my body was deficient of and taking vitamins for that, along with all my other life changes, I now have one of these sudden loss of energy episodes every few weeks . I only have one then when I've gotton too stressed or overdone myself. I write this to share, in hopes that you may also have similiar things which have happend to you in which you may want to share. There was many times during those years that I did not want to live. If not by the grace of God , I would not be alive. I now believe that I am still here so I can share my experiences with you and those like you . For if I can feel better from where I came from, then so can you. I'm here to spread hope to those of you who suffer and feel as if you have no hope. I'm also always willing to listen when you need someone to hear.

Comment by Janine Waldman on November 17, 2009 at 5:53pm

As I read the post from the last couple of days it makes me also think about the fact that I probably inherited this from my mother. Who use to have anxiety attacks over us kids and going to bed and being blamed by my dad that I had made her sick. I was the youngest and only girl, so when I was a teenager in the 70's, well need I say more.lol.. Teenager in the 70's was enough... I have also blame an extremely stressful situation that brought mine to a head. Twenty some years ago. But all makes since that I inherited the possibilities of this disease being dormit in my body until I began going thru way too much. And that's another story of it's own. Catherine my prayers and blessings to you and your family. Peace & Luv to all...

Comment by Clarissa Shepherd on November 17, 2009 at 3:43pm

Catherine, I am so sorry for the loss of someone so dear. I'll write you in your inbox.

Comment by Cathy Tolman on November 17, 2009 at 2:35pm

Catherine, sending my deepest sympathies and prayers to you and your family. I have lost all my grandparents years ago, and it is very hard, it is like you're saying goodbye to the childhood you shared with them.
hope you feel better , at least physcially, very soon. I know the loss will hurt forever.
hugs to you
Cathy

Comment by Catherine Louis on November 17, 2009 at 2:29pm

Thank all of you for your prayer. Our beloved granny went to be with the Lord this morning. She looked just like she was sleeping and so much at peace. I know she is not suffering anymore and as much as I know we are going to miss her she is at rest. On the other note, yes I believe the doctor I saw yesterday maybe able to help some. She as me about domestic abuse in the past and I said yes there was and she said if it happen to the brain that it is the same as the shaken baby thing. It is raining today, very cold, and much stress so you all can guess how I am feeling. I want to say thank you to each and everyone of you. I know that you all are in pain and have many other problems, but I want to thank you for your love and kindness. I pray blessings on each and everyone of you and send my love to all of you. Again thank you.

Comment by Cathy Tolman on November 17, 2009 at 2:02pm

what is a compound drug store? is that a prescription gel?

Comment by Katherine I Parker on November 17, 2009 at 1:37pm

The perscription that has helped me the most is Ketoprofen 20%/Lidocain 5% Gel. You can only get it at a compound drug store. They're hard to find

Comment by Cathy Tolman on November 17, 2009 at 12:22pm

I can now think back to many many times when I know now that the pain I had was fibro. I used to actually have panic attacks because I'd be doing something physcial and I'd end up in so much pain I figured I was having a heart attack or a stroke or something. I recall taking my kids palces and walking all day, going to maybe a theme park or something and I'd have to sit down cuz my back etc., hurt SO bad I wanted to cry. at the time I simply blamed it on being over weight. but now I know that want all it. Ive lost 70 pounds so far and I hurt more now than ever. I was only diagnosed about 6 years ago with FM.

Catherine, I hope things get better for you soon.

Comment by Clarissa Shepherd on November 17, 2009 at 11:49am

Catherine, I'm sorry for your grief and will hold you close in prayer. I do think many people have not gotton diagnosed as soon as they got sick. Some many years later.Write if you need me. Blessings to you my friend.

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