Newly Diagnosed with what seems to be the end of my life! HOW DO I COPE?

Hello Everyone,
I hope I find a few shoulders to cry on for support in these rooms. I know my family, kids and partner have absolutely no understanding for why when they hug or touch me makes me shreak or flinch in pain. Even my 3 lb. poodle hurts me? They make me feel like I am over exagerating when I cant walk the mall for an hour, or movie theatres seat hurt me ( and they recline) the coldness hurts, my hips hurt, the bottoms of my feet,my shoulders and back are the worst! and well, I don't want to continue to complain here, I just wanted to ask, How did you COPE, when you first were diagnosed? How do you simply explain to people that should know whats going on? and most IMPORTANTLY HOW DO I HAVE MORE BETTER DAYS?
Also, what is Fibro Fog?

Thank you so much, I am desperate for some support, Im not sure if i did this right?
Sincerely unbreakable#Niki

Niki

It is especially hard when your family and friends don't understand.It can be so frustrating even if they are trying to understand, they think if you would just get up and do things that you would get better. I understand but if you haven't had constant pain and exhaustion, then it's hard for them to relate to what you feeling. Fibro fog is sorta you keep forget things things, forget words and you just need to read up on it. I'm sure it's different with everyone. Fibro has different systoms for everyone. You have lots of the basic ones but they can differ with each person. Read Fibro 101 on the top of the list and that can answer lots of your questions.

By no means am I'm an expert. I am just now figuring out what I have and still have questions the people on this forum are very caring and eager to tell their stories and answer questions. They are going through the same thing and so they understand.

Hope you find the answers you are looking for and I know you will have the support.

Good luck, God Bless.
Jabeau

maybe I should mention that I had a piece of one inch foam cut for me at Joanne's fabric. It's the same length/width as a standard pillow, and it's in a pillow case, and it goes just about everywhere with me. It helps in the car, and the movie theater, n planes, in restaurants. it does sometimes get left behind--- oops-- but I love it.

Hi, Niki, and welcome! I remember when my kids would give me a playful swat on the arm and I would clutch my arm while saying OW loudly. I just knew I would have a bruise from that swat but it never happened because they didn't hit me hard. My kids would look concerned and say that they didn't hit me hard, and that was accurate but our pain is magnified. They stopped with the playful swats.

When people go to hug me, I ask them to please not hug too hard because it hurts my back. They respond.

I think the problem that people have with their family is because their family loves them, worries about them, but they don't know how to help them. So they get upset and angry, and frustrated, too...especially husbands. Men think they can fix most things but they can't fix their wives that have fibro.

Have you been diagnosed with fibro? If so, I hope you went through a myriad of tests to rule out other illnesses that have many of the same symptoms as fibro. People have been misdiagnosed because some doctors just announce that you have fibro without really checking you out. Just wanted to let you know that.

I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a muscle relaxer called Robaxin to help with my pain and fatigue. I also walk at least a half an hour daily and swim in the good weather too. I pace myself when doing things and I also use trigger point therapy on myself. All of this helps me be in control of my pain and I have lived a full and enjoyable life in spite of this illness.

Now, what works for one with fibro doesn't necessarily work for another. It's not a one size fits all illness. It's more trial and error to see what helps you with your painl. You will get many suggestions on this forum and I just gave you a few above.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there. Good starting links would be Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. There are links about the supplements I mentioned and how they work in the body, too. All of Fibro 101 is good so do read it.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine

Nicki,
When I was first diagnosed with Depression, I went through a very tough acceptance phase. A great therapist was crucial in getting my mind to the acceptance. In my case acceptance was connected to issues of control. I have a history of childhood sexual abuse. I still struggle with acceptance at times.

Gentle hugs to you!

AnneMarie

I was diagnosed in February 2013. Due to steady deterioration of health and ability to work, less than four weeks later I wound up going out from work on medical leave until August, at which time I returned, but only part-time (24 hours a week on paper, 35 hours a week in reality).

During that time "off," I read everything about Fibro I could get my hands on. I made an appointment with a therapist who specialized in helping people cope with chronic pain and/or illness and saw her once a week until August (my time slot became impossible to keep once I started work again). However, it was really helpful to have someone to talk to and help me understand what was going on, and to help me grieve.

You're right, in a sense -- it IS the end of your life. Your OLD life. There's a new you, a new "normal." The sooner you accept this idea, the easier it will be, but accepting the idea is a lot more difficult than it sounds. You have to say goodbye to your old self because (s)he doesn't exist anymore, or at least not in the same way.

My therapist had me make two lists (sort of like a pro and con list, on either side of my paper): one list was things that I used to do that I couldn't count on being able to do again soon (not impossible, but certainly unlikely for a while), and the other list was things that I used to do that I could still do (even if it was in a more limited capacity). It gave me a more realistic sense of what things I *didn't* have to give up, but might need to modify how, when, or how often I do them. She then asked me to look at the list of "can't do anymore"s and see if there was anything I could modify about them to add them to the "can do" list. For each of the items that remained in the "can't do" list, she had me write an obituary or a eulogy about them (as if those items were people), to help me say goodbye to them.

I said goodbye to the old me; that part was very sad, but the other part was really helpful -- having a list on paper of all the things I could still do, that could be a part of the "new me." She then had me add to this list things that I had wanted to try or learn but never had the time or inclination, but now that Fibro had forced me to pay more attention, prioritize more clearly, and take more time for myself, I might be able to try. That was fun. I had a chance to re-invent myself. It's sort of like puberty all over again (hence the "Fibro Butterfly" symbol you may have seen floating around, the idea that not all change is bad and we should embrace what we might become). Writing things out helped a lot -- I'm a list-maker by nature, and an English teacher, so these activities work well for me.

Who I am now is not who I was two years ago, and I'm still getting to know who this new me is. My therapist helped me to understand that my old self wasn't built in a couple of months, so my new me won't be, either. I don't feel pressure to completely turn myself around instantly, but to let it be a process. I'm not going to pretend that's easy, since my old way of doing things was overachieving and perfectionistic (and I can still hear the old voice at the back of my head saying, "But you CAN be a superhero! Just push harder!"). There are certainly times when I'm frustrated and sad and angry, and I can't pretend I'm not. I don't have it all together or figured out ("Yes, you do! You know everything and you're always right!" old me whimpers).

I try to set more realistic goals and timeframes for getting things done. I plan in rest time and exercise time every day (although if it's a doctor appointment day, exercise sometimes gets sacrificed). I'm still figuring out how to pace myself and exactly what my "ideal range" is -- when I'm not doing so little or so much that I'm feeding the Fibro Beast. I take notes to help me better recognize and analyze trends, especially since I have a hard time accurately remembering events or timelines.

Like the rest of life, it's a journey. Make sure to reward the little victories. Give yourself time, flexibility, and permission to not do it "right." I mean, yes, Fibro is forcing you to make the decision AT ALL, but YOU decide what's right, now. YOU decide the metrics and benchmarks. You can be your own biggest cheering section and your own best advocate. Good luck! :)