Ya fibro is kickin my bum today, and yesterday, and probably tomorrow too

Have I accepted my fibro? After almost 20 years I guess I better. I still fight against it every day. I was a girl when this all started, but being a mom (20, 17, 2 & 7 months- younger kiddos are adoption from kinship care) many of you know babies know understand that you are tired, sore or sick…again. We all know its frustrating and so easy to dip into the poor me’s. I try to do things like play on the floor with the babies, find things that will entertain them and won’t hurt me. The older kids mostly get it after all, they grew up with it too. They know I’d rather see a movie with them then go to the beach. They also know they will be helping with the babies if we over do it. :wink: My hubby of 20 years still struggles, it hurts him to see me in pain, but he gets it. Friends and family are a mixed bag. I honestly don’t talk about it much. I hate explaining it.

How do you deal with fibro and friends & family?

Hi Kimberly,

You are a very special lady to adopt children, they are so lucky to have you and your love and support. Nice that your older children help you, and help with the babies! Sounds like you have a great hubby, they are priceless!

My little grandson's love to come and stay, my Mom and hubby help me with them, takes all three of us to do it, but I always have such a great time with them, they keep me busy, moving and laughing! I tell everyone that they are my physical therapists!

Welcome to the group, so nice to talk with you!


Hi Kimberly, welcome! There’s a special place in heaven for people like you who take care of the precious little ones when their own parents can not. I worked with CPS for 13 years and saw a lot of kids get swallowed whole by the system. And such little ones when you don’t feel good. They take a lot of time and energy and you are right- they don’t understand.

I am still trying to figure out how to deal with friends and family. I have a letter that I modified from a post that someone else put in this site that I can send you if you want. It pretty much covers all the bases.

I am glad your husband supports you but I know that it is hard for them to understand and to know what to do as men always just want to fix things even when they can’t. I have been having persistent symptoms for about a year and was only recently diagnosed and my husband tries to be supportive but wants me to be me again and go and do like I used to. We were so active.

My best friend of 20 years just wants to know when I will be normal again. My family all live far from me and I don’t see them very often in the best of times. I will see them in a couple of weeks as we are traveling to Atlanta for my parents’ 50th wedding anniversary celebration. As long as my father does not start telling me to take a sputum sample to my doctor, I will be okay (yes, he seriously does crap like that.) I sent the letter I mentioned to them so hopefully they will understand when I need to rest and not be part of the group. It will be a long weekend of activity so I have had to plan to have a place to be alone and quiet when needed.

I don’t know that I will ever understand this disease, what causes it or why me? I try to stay positive and dwell on the good things in my life cuz there are still good things. Just might be a little harder to find them!

Let me know if you want to see that letter. Best, Mary Beth

Oh ty for your kind words. I am adopted too, now I know how my Mom felt. They are just my boys now, cannot imagine things any other way. It doesn’t hurt that they keep me off the couch. <3 Now nice you have such a wonderful family!

P.S. my son R & I were talking about "who is adopted…“R, Momma, Great Grandpa… and then he added " & Puss-N-Boot is adopted Momma” lol. :wink:

I’d love to see the letter, ty.

Kimberly, here is the letter in a word doc. I also pasted it below. didnt know if you would be able to open it from an attachment. Have a great night, Mary Beth

Hey this is just a little letter to let you know how I feel and it explains a lot of what I go through.

Fibromyalgia isn’t all in my head and it isn’t contagious. It doesn't turn into anything serious and nobody ever died from fibromyalgia (thought they might have wished they could on really awful days!!) If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that's fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about my symptoms I don't want you to think I'm making this all up as I go along.

Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There's no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That's about the best I can hope for. Other times I may take a lot of medication and still won't feel any better. That's just the way it goes.

I can't control how often I feel good or when I'm going to feel terrible. There's no cure for fibromyalgia and it won't go away. If I am functioning normally, I am having a good day. This doesn't mean I'm getting better -- I suffer from chronic pain and fatigue for which there is no cure. I can have good days or good hours. But a good morning can suddenly turn into a terrible afternoon.

I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Weather changes can have a big effect on how I feel. Other times there may be no warning, I may just suddenly feel awful. I can't warn you when this is likely to happen because there isn't any way for me to know. Sometimes this is a real spoiler and I'm sorry. The sadness I feel for what my illness does to those around me is more than I can easily describe. You may remember me as a light-hearted fun loving person -- and it hurts me that I am no longer what I was.

Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it's jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have a hundred words for pain. Sometimes I just hurt all over like I've been beaten up or run over by a truck. Sometimes I feel too tired to lift up my arm.

Besides pain, I have muscle stiffness which is worse in the morning and evenings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may have to ask you to help me up. I'm creaky and I'm klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don't seem to connect the way I should. Hand-eye, foot-eye coordination, it's all off. I walk slowly up and down stairs because I'm stiff and I'm afraid I might fall. When there's no railing to hold on to, it's terrifying.

Because I feel bad most of the time, I am always pushing myself, and sometimes I just push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it's hard for you to understand why I can do one thing and not another. It's important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are real.

Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I'm still liable to forget them. There are times when I am in the middle of a conversation and just go blank. I sometimes have trouble finding the word or words I want to use. Don't worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer's. New kinds of brain scans have actually documented differences in our brains (But then, we all knew that I was a little off!)

I am dizzy and off balance a lot of the time. I run into walls and doors and sometimes have to sit down without too much warning to the people around me. On occasion, I will even have to lay down right away, even if I have to lay down in the middle of the floor. When this happens, I just want to be left alone until I feel okay to get up again.

I mentioned my sensitivities earlier and I need to talk about them again. It's more like an intolerance to everything. Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. I also have a problem with heat and cold. It sounds like I'm never happy but that isn't it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don't know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or go home to sit alone and that's really all right.

I don't want or need you to give up doing what's important to you. That would only make me feel worse. Sometimes when I feel lousy I just want to be by myself. When I'm like this there's nothing you can do to make me feel better, so it's just better to let me be. I have problems sleeping. Sometimes I get really restless and wake up and can't get back to sleep. Other times I fall into bed and sleep for fourteen hours and still be tired. Some nights I'll toss and turn and not be able to sleep at all. Every little thing will keep me awake. I'm sure that's confusing to be around. All these symptoms and the chemical changes in my brain from pain and fatigue can make me depressed as you'd imagine. I get angry and frustrated and I have mood swings. Sometimes I know I'm being unreasonable but I can't admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I'm in one of my moods, secretly I'm grateful. I can't always admit it at the time, but I'm admitting it now. One thing I can tell you is it won't help to tell me I'm irrational. I know I am, but I can't help it when it's happening.

I suffer what seem to be new losses every day. I think that I am going to have a “normal” day and I get up and do normal everyday things only to get knocked flat on my butt. I cannot exercise the way I want, I cannot go do things I want to do, I cannot work, I cannot drive, etc., etc. I am not complaining, I just want you all to know that I do not choose to lay around doing nothing. I do what I can and then I just have to stop. I want you to understand this because it is very important to me.

I love you all and love spending time with you. Just please bear with me when I do spend time with you and don’t take it personally when I flame out.

Gentle Hugs to you all.

1923-Letter.docx (19.1 KB)