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Living With Fibromyalgia - Online Support Group

Having a very rough day

#1

I am a student at a university, and school is getting ready to start up again. My grades have slipped because of the horrible brain fog and pain and just lack of motivation to go out and do anything. I’ve known I had fibromyalgia since high school but I was just recently diagnosed with both fibromyalgia and chronic fatigue syndrome. I’m having the worst time emotionally lately. I’m on medication for both diseases but I’m still having to force myself to live… to get out of bed, to go out with friends, to have a relationship. I don’t have anyone to talk to about all this because no one really understands it. All my friends and family think i’m fine because I act fine and they can’t see what’s going on inside of me. My roommates want to go out and party every night or go shopping or walk around downtown where I live, and I do it but it’s SO exhausting. I can’t say no because then I would be cutting what little support I have off and I would be all alone. I don’t want to lose friends because of my diseases or because I’m so tired or weak and never feel like doing ANYTHING. I guess this is just me trying to get all my feelings out in a place where people know how it feels. I really just need people to talk to.

#2

Kenn,

I would say the first thing you need to do is learn to say no. And if your friends are no longer your friends because you go out once or twice a week instead of every night then they weren’t really your friends in the first place.

Once you start living in moderation and living within your physical means odds are you’ll no longer be completely exhausted all the time, you’ll have a tiny reserve of energy to work with and the medication you’re taking will start help more because you’re not running on empty every minute of every day.

Along with learning to say no you need to start protecting youself (which is part of saying no). You’re dealing with a life long, chronic issue and you need to manage it accordingly. You can do this!

I believe it was Mark Twain who said “Don’t worry about what others think of you, they’re too busy worrying about what you think of them to think of you.”

azurelle

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#3

Hey Kenn,

I totally agree with Azurelle. You need to start saying no to going out all the time. It’s just way to exhausting. I realize you’re in a tough situation being in school and all but try and limit what you do on a daily basis. I’m sure you must of heard of the spoon theory. You have only so many spoons to use up in one day so use them wisely. I usually just plan on one or two appointment a day and then rest. I’m sure that’s going to be tough with all your classes and studying. I feel for you. I had chronic fatigue when I was in college too and it is hard. But I’m here for you if you ever want to talk.

#4

For a very long time with fibro, d ribose is what gave me the energy to function more normally…i had a medical newsletter saying everyone with fibro shouod use it… i started out with the original version , corvalen m And now take an off label of it…it helped so much when i had young kids to take care of and we stayed so busy…it actually helped until one winter my vit d crashed badly… we need to be aware and not let that happen… i felt about 90 from that and had every symptom of d deficiency…i took 10,000 a day over the winter this yr… that was enough d that my eyesight improved dramatically, as a side effect…this time of yr when i can get outside more i drop back to 5,000. Even when we have fibro which is enough to deal with…other things can happen that impacts it and we need to be aware, its not always the fibro…

Lmd

#5

Hello Kenn!
I am also a student with fibromyalgia and other autoimmune diseases. I understand how you feel. Sometimes it is really hard to be a student with a condition. We are so young and we want to experience school life to the fullest (facing exams, enjoying parties with friends, unwanting failing grades, having relationships) like any other student. But having a condition provides us some of our limitations and we need to acknowledge that (although I my self have cheat days). I had a hard time at school before that I even had a leave of absence (LOA). After that LOA, I realized I needed to love and take care of my self first before I love and take care of others. I tried to have low expectations with people around me and tried to expect that they may not understand my condition. However, I still tried to explain and educate them about my condition. When some of them (such as some old friends) left me, I understood them. Sometimes it is just hard for other people to understand and accept that they have a friend with a condition; but, because of that, I found new friends who were there for me during good times and flare ups and new friends who were willing to compromise with my condition and adjust their schedules just to be with me. Although sometimes they fail or cannot compromise but having low expectations really helped me in dealing with such disappointments.
Also, having a “me” time when I can do personal hobbies and interests also helped me not be dependent with my friends’ and family’s time.

I know it will be a hard choice for you to disclose your condition and it is really difficult to grieve on your old self and change routines; but you and your friends also have a choice and a free will. Some of your friends may have difficulty handling the situation but we cannot hold them back. We just need to go back to the comfort of our selves. Letting go of the old frienships will be painful but sometimes it is the best choice for you and your friends.

Anyway, I hope this helps and encourages you. Just don’t give up and keep on fighting!

P.S. Try joining an organization that feels like family. When you have your introductions, prime them immediately regarding your conditions and the accommodations you will need. Later on, you won’t realize people are actually very considerate and are trying their best to understand and accommodate you. If not in an organization, start with your family or with your closest of friends. You just need to trust and hope people will understand but have low expectations. Honesty is still the best policy.

#6

Hey Kenn,

I must say that I admire your strength, but I do agree with what others have said. You need to learn to say no. The people that truly love you will stick with you, and it might even open up their eyes to what you are going through. You need time to take care of yourself otherwise you will end up completely exhausted. One thing that fibro has taught me over the years is that if I push myself too hard, my body will eventually shut down because I am not taking care of myself as I should be.

Wishing you all the best!

#7

Hi Kenn - let senior maturity speak here !! I am 74 and have had fibro for FORTY EIGHT years. That’s before anyone had a clue what it was. The first rheumatologist i went to said You have Fibromyalgia and I do not know what I can do for you, but thanks for coming in. !! I have never had the tender spots.
My entire body is tender. I obviously fought through the years of raising a family and then survived a divorce and was a single mom, working a job, getting kids to and from school, trying to belong to a couple of women’s clubs, travel, etc.
Sad to say, it took me YEARS to understand the only way I could continue to actually stay alive was to say NO. About 15 years ago I realized i had to have only one or two appointments per week. I could go out to eat and party ONE night a week IF i could catch a nap the next day. It was not until then that I realized how many years I had fought this lifetime disease and it always won.
Please absorb what all those ahead of me have said… you can have a life, a job, a family, but you MUST learn to say NO to many things in order to enjoy things. Prayers will be coming for you from Nebraska.

#8

Thanks everyone for the replies, I’m still struggling pretty badly. I don’t go out with my friends much, they still don’t really understand it but I guess they’ll understand at some point. I tried reaching out to a group at my University for people with Chronic diseases, but the group shut down last year due to lack of activity. I really just don’t have anyone to talk to that will truly understand what I’m going through without comparing my unbearable pain and exhaustion to their normal everyday pain and exhaustion. I try to tell them it’s not the same and explain, but everyone thinks I am just being dramatic. My family is more supportive now, but they just don’t know HOW to support me, and honestly I don’t either. I had to register with the Disability Center at my school to help me with tutoring, getting to classes, and absences due to my always changing meds. My doctor is slowly upping my dose on my CFS medication and it really helps, I’m still a little tired, but it’s not unbearable and I can focus in class and comprehend what’s going on around me… but the downfall is I can’t eat anything. I just have no appetite or motivation to cook when I get home from a long day of classes, really all i eat is cheese and nuts because it’s easy. I know that’s bad and I should get some protein shakes or something, but everything just makes my stomach churn on these meds. I love this website because I don’t really say any of these things out loud and it’s nice to vent and have someone understand and share their experiences and just support me. I have been saying no to things that make me stress or flare, but saying no feels like I’m isolating myself. I just haven’t figured out how to handle everything yet, and I really appreciate everyone’s help.