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Mischa

New member
Joined
Sep 23, 2019
Messages
2
Reason
DX FIBRO
Diagnosis
01/1991
Country
US
State
Colorado
This is my first post. I'm a 72 y/o female, diagnosed with fibromyalgia in 1991 subsequent to a fall on the ice. The most difficult thing for me is this: I have greater than 37 years' experience as a social worker, hold two masters' degrees, am an ordained minister, a certified clinical hypnotherapist and, from 2007 until 2017, maintained a small private practice. My symptoms have worsened to the point where I'm not able consistently to function as a counselor and/or minister. On good days, I could easily meet with 5 or 6 clients. On "fibro" days, the pain, fibro fog, and fatigue knock me on my butt and I'm unable to even make it out of my apartment. I feel soooooo frustrated. If only the "good" and "bad" days were predictable! So, if you're frustrated by a similar situation and have come up with some effective self-talk, I'd love to hear about it! Thanks, and blessings!
 
Hi. My name is Kristin. I am new to this forum and newly diagnosed last week. I posted two threads one yesterday and one today. So far no replies. I seen you didnt have a reply. I am not even sure if I have correct diagnosis.

That sounds terrible to have all your degrees and have to not be able to have clients. I hurt and just started getting pain and having to stop usually for me its more fatigue. I do medical billing from home and so far so good.

I didnt want you to have no replies. I hope that doesnt happen to me I had questions.
So do you just not take any clients at all anymore?

Kristin
 
Hi, Kristin. It's so kind of you to respond to my post. Thank you! Getting the diagnosis is so difficult. Did you have to see several doctors prior to getting a diagnosis? I was very fortunate that my doc recognized my disease quickly. In 1991, when I was first diagnosed, fibromyalgia was relatively unrecognized. My symptoms have worsened over time. At first, pain, fatigue, and fibro fog were the worst symptoms, but I have several others now, in addition to those three. Did your doc rule out lupus and MS?
Wishing you the best! Blessings!
 
Well I call my diagnosis quick after reading many of these people’s stories. The fatigue was worse around April or May and a doctor checked thyroid and for hashimoto. I also have intermittent blurry vision. It came back fine and no thyroid issue. But by late summer it had all of a sudden got way worse and now Most days I am exhausted by early afternoon but also now add in muscle pain and weakness. Many days I feel like a cane would help because my legs feel weak She was sending me to an endocrinologist and thought I had cushings disease. She really didn’t do any blood work with the new symptoms so I made a new appointment with a new dr. She did tons of bloodwork and got me into a rheaumatologist right away. ( this has all happened within a month). All tests were fine except inflammatory ones were high but no RA markers or autoimmune markers all those were fine. Previously I had read online about a FM blood test so I answered some questions and my insurance information. They sent me a test kit and they had me go get my blood drawn and I got my results and it said 97% positive. Although the rheaumatologist also said after poking me in different places etc said I had it
So I wrote my new primary physician to see if I can get a handicap placard to use on afternoons When it’s hard to walk I can use it. She wrote back “ fibromyalgia is not a diagnosis appropriate for a handicap sticker, in fact increasing exercise will help treat the fibromyalgia and walking further from the parking spot will actually help with the disease” ..... I feel embarrassed because I didn’t know it will help because so far when I am out walking around and doing errands I am worse and more pain by early afternoon. I have no clue if this is true. I wrote back and apologized and said well if that’s the case then maybe I have FM and something else because why is it harder to walk in the afternoon? I have no clue I ordered an infa red heating pad. I haven’t got it yet but warmth feels soooo good. I am confused. I had no idea exercising will help the disease How can you physically do that when you are in pain and muscles are weak. I might put this in the rant area.
 
It could be fibromyalgia, simple blood test will give you an accurate diagnosis. If it's 97% should be correct. Also, the doctor should have given you a pamphlet about fibromyalgia. In it you can read about other conditions that comes with fibromyalgia like Chronic fatigue, trigger point or tender spots in body is MS, TMJ, IBU, etc. If it's difficult to walk, it's probably partly due to MS. The best to you! I hope you get some answers! Hot pads and rest sounds like a good place to start.
 
This is my first post. I'm a 72 y/o female, diagnosed with fibromyalgia in 1991 subsequent to a fall on the ice. The most difficult thing for me is this: I have greater than 37 years' experience as a social worker, hold two masters' degrees, am an ordained minister, a certified clinical hypnotherapist and, from 2007 until 2017, maintained a small private practice. My symptoms have worsened to the point where I'm not able consistently to function as a counselor and/or minister. On good days, I could easily meet with 5 or 6 clients. On "fibro" days, the pain, fibro fog, and fatigue knock me on my butt and I'm unable to even make it out of my apartment. I feel soooooo frustrated. If only the "good" and "bad" days were predictable! So, if you're frustrated by a similar situation and have come up with some effective self-talk, I'd love to hear about it! Thanks, and blessings!
Self talk for you: I love you/ I am great/ I am the best, I give myself permission to do something fun like watch a funny program and kick back with my favorite drink, (For me usually hot tea.) I am not here to do everything. I am here to be. I will take time to enjoy the day. That's only a beginning, now you can add on. You are more important than anything that you do! You are original and you are you!
 
Hi. My name is Kristin. I am new to this forum and newly diagnosed last week. I posted two threads one yesterday and one today. So far no replies. I seen you didnt have a reply. I am not even sure if I have correct diagnosis.

That sounds terrible to have all your degrees and have to not be able to have clients. I hurt and just started getting pain and having to stop usually for me its more fatigue. I do medical billing from home and so far so good.

I didnt want you to have no replies. I hope that doesnt happen to me I had questions.
So do you just not take any clients at all anymore?

Kristin
Hi Kristin - I am sorry you didnt get any replies. I am new to the forum and sometimes it seems alittle hard to figure out and for me to see whats new etc.
 
Mischa,

For me, the self talk has to be very realistic. I cannot do "I am great, I am the best" kinds of self talk because I don't actually believe that, and it sounds overly prideful to me. Although of course if it works for you, do it!

What works for me is to remind myself of the things that are indisputably true. So what I do is remind myself of these things:

I am a fortunate person, because I have a place to live, clean water to drink, enough food to be healthy, and a little money in the bank.
Because I have those things, I am in the top 5% of richest people in the world.
The other 95% of the world human population has much less than I do, and many of them are sick, have undiagnosed diseases, live in pain, and have no medical facilities at all. They have to work hard every single day just to have a small amount of food to eat.
Hundreds of thousands of refugees have no home, have lost everything they worked for through no fault of their own.
I am indoors, and safe.
I am able to take a day off and do very little or nothing, and still have food to eat today and tomorrow.
I will take this day to enjoy a movie, or a book, or lie in the sun, or visit on the phone, or listen to music, or do whatever feels soothing and helps me to relax and take care of myself.
 
Oh, Mischa, I forgot to address the unpredictability. that is really a hard thing! I still struggle with it myself. But I have learned two things:

I gotta roll with the disappointment that can come because I don't get to do what I had planned or wanted to do that day. If I let it get me down or frustrated, I only make my pain worse. So I diligently practice Acceptance Of What Is.

The other thing is: I tell everyone I make plans with about Fibro, and that I may have to cancel even on the day if it turns out to be a bad day for me.
Some people can deal with this just fine.
Others cannot. Mostly, if a person cannot be flexible and work with me on this, they end up not being in my life. This is a shame, but really cannot be helped, and even though it can hurt a lot you find out who your true friends are.
 
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