Hello 😊👋

ErinMc

Member
Joined
Mar 14, 2021
Messages
15
Reason
DX FIBRO
Diagnosis
09/2019
Country
US
State
CO
My name is Erin. I'm 45 years young, married to a wonderful man, and have five children. I was diagnosed about 18 months ago after a positive ANA blood test sent me to a rheumatologist. Since my diagnosis I have been rather lazy in learning about this condition. I assumed it was just about the pain and stiffness I constantly feel - wrong! I am realizing that the majority of my other symptoms can be attributed to FM. While I am still on the radar for auto-immune disease, I am on a journey to learn more about my FM. I believe my FM kicked in while I was going through a terrible divorce from an abusive man. I believe stress is my #1 trigger. When flare ups happen I feel like I have the flu - everything hurts, my muscles feel so stiff that it is difficult to walk or move too much. The fatigue and brain fog make it difficult to just think. I just feel awful. The good thing is that the flare ups only last a day or two. My ongoing symptoms are: minor muscle soreness and stiffness, trouble sleeping, night sweats, some depression, and low motivation. I have been prescribed cymbalta which has greatly helped. I also use essential oils. My biggest struggle is educating my family and loved ones about it. Does anyone have any pointers? Thank you for reading this. ❤️😊
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,280
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi Erin, and welcome, although sorry you have to be here.

Stress is my #1 trigger as well, and it is for many of us. People can make this a lot worse by stressing us out, or they can help just by treating us and our condition with understanding and respect.

Educating people about this is definitely a challenge. I recommend being very upfront and honest about it, and don't downplay the pain or how you feel. At the same time, tell them in a manner that lacks any self-pity......"Just the facts Ma'am".

Let them know that at times you will have to cancel plans and this will never be because you want to, only because you have to.
Those who you will need for help at times like your partner, explain what level of help you are comfortable with. For instance, some really like to be coddled when in a flare, others prefer to be left alone. And tell him what kind of help you need. Be very specific, so that he can have a sense of really helping, and won't feel powerless to help you.

As for others, some will be helpful and/or understand and others won't. If anyone is mean to you when you have to cancel a plan, tell them that you don't need them to help you, but that if they are not going to believe you or are going to say disparaging things to you, they are hurting you and making your condition worse. Ask them to treat it as if you had come down with the flu.....they would not be unwilling to believe you nor would they say disparaging things if that happened. If they accept that, and change how they act, great. If they don't, and keep on doing or saying hurtful things, do your best to cut them from your life.

Finally, choose very carefully to whom you ever spend time complaining about how you feel. Check with the person ahead of time if it is OK with them for you to do that. And keep it short. My preferred method is to ask the person, "My I have five minutes to complain?" That gives them the chance to say no if they are already having a bad day. If they say yes, look at the clock and don't go over the five minutes. You will feel better for having had the chance to blow off steam, and keeping it short prevents your going on and on which will not help you feel better, and would eventually burn out the patience of the person listening.

And be sure to thank the people who are there for you, and let them know you will be there for them as well.
I wish you the very best of luck.
 

ErinMc

Member
Joined
Mar 14, 2021
Messages
15
Reason
DX FIBRO
Diagnosis
09/2019
Country
US
State
CO
Thank you, sunkacola. ❤️ I value your comment and appreciate the time you took to read/respond. I'm so grateful to have found this forum.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,280
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Thank you, sunkacola. ❤️ I value your comment and appreciate the time you took to read/respond. I'm so grateful to have found this forum.
You're welcome. We are here to help.
 

kmay

New member
Joined
Mar 19, 2021
Messages
3
Reason
DX FIBRO
Diagnosis
10/2016
Country
US
State
UT
Hello, I am new to doing any kind of forum. I was diagnosed with FM five years ago but I was in denial that my problems were FM related since I was also diagnosed with Sjogren's Syndrome at the same time. I assumed most of my chronic pain was due to the autoimmune disease (and really I still can't tell what pain is caused by which condition). I believed that FM was just something doctors decided to give as a label when they really don't know the answers. I am hoping to glean any tips from people who have found ways to help lesson what triggers their flare ups. It is nice to get support from people who are fighting the same battle. Hope you all are well.
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
442
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hi kmay - After my centre for rare diseases suspected Sjögren's, my clinic rheums shrugged and said: so what's the difference, same route anyway. I wdn't've been able to tell the difference either. Now lip biopsy has - fairly clearly - given the all-clear... (So I don't have to watch my lymph nodes that closely any more... ;-D)
Even some fibromites keep saying this diagnosis is a rheumatologists' trash can or similar, but the core symptoms are quite a bit too clear for that to be true. And your hope to glean tips is exactly what makes the diagnosis for us helpful. Altho the ideas of my closest friends what to try were the most helpful (50%: cryotherapy, acupressure, cold-showering, breath-holding and back yoga) and my own ideas listening to my body was second most (30%, my wife argues to put that score up quite a bit), what I learnt by the interaction with others on forums is probably slightly more than how my 45 docs helped me (both around 10% as idea-givers)...
 

Flexecif

Active member
Joined
Sep 1, 2017
Messages
92
Reason
Diagnosis
00/0000
Country
CA
State
Canada
Hi Erin. Hope you are well. It's one thing for our family to know the situation and one thing for them to understand what it really means. Just be strong and don't pretend to feel okay when you don't. Just communicate openly and also don't forget that they also feel your pain, sometimes, it's just frustrating for them to know that there sometimes, they can't do enough.
 

ErinMc

Member
Joined
Mar 14, 2021
Messages
15
Reason
DX FIBRO
Diagnosis
09/2019
Country
US
State
CO
Hi Erin. Hope you are well. It's one thing for our family to know the situation and one thing for them to understand what it really means. Just be strong and don't pretend to feel okay when you don't. Just communicate openly and also don't forget that they also feel your pain, sometimes, it's just frustrating for them to know that there sometimes, they can't do enough.
Thank you! Trying to explain FM to my family has been the most challenging thing for me. I appreciate your advise and I will follow it.
 

humordopey

Member
Joined
Nov 23, 2020
Messages
18
Reason
Undiagnosed
Diagnosis
01/2019
Country
US
State
CA
Greetings Erin! Welcome to the forum. There are a lot of great tips and advice on here. Hope you do well with letting your family understand FM.
 

ErinMc

Member
Joined
Mar 14, 2021
Messages
15
Reason
DX FIBRO
Diagnosis
09/2019
Country
US
State
CO
Greetings Erin! Welcome to the forum. There are a lot of great tips and advice on here. Hope you do well with letting your family understand FM.
Thank you.
 
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