Why do I have such a hard time accepting my Fibro diagnosis?

Does anyone else struggle with this?

I find myself obsessing about looking for answers. Some days I'm fine and I accept my diagnosis. Other days I don't understand how I went from living a completely "normal" healthy life to ---- this. I guess it does not help that there are really no concrete answers for Fibro either. No one can tell me exactly what has happened to my body.:( I've been tested for EVERYTHING....lupus, lyme, ms, MRI's, ultrasounds, thyroid, ect... And then there is always the LYME fear in the back of my mind lingering.... I hear stories about people testing negative but who really are suffering from Lyme. So, I end up second guessing my diagnosis.:( I have a photographer friend who tested negative 4 times for Lyme and turns out she has it after getting tested at Igenex. She's on antibiotics now and getting better. So, does everyone need to get tested through Igenex to feel secure in their diagnosis? To be honest - I'm not even sure how I feel about that lab anyway. It's not approved through the FDA. It's all just very controversial and confusing. I hate that this has happened to me and I hate the lack of answers in the medical community.

I want to add that I have had "health anxiety" most of my life so OF COURSE I would get an illness that has very few answers. Typical! lol

Thanks, Karen. I think I get like this when I feel overwhelmed you know? We just moved into a new home and my grandma passed away last week. I saw my dad for the first time in years so....yeah....my symptoms flare up which makes my health anxiety flare up.:( Just typing this out and seeing that helps me realize - geez, I do have a lot going on!

This to shall pass, right? I hope you are doing well too!

Makeupmama, I think most of us go through this. I went from no fibro to full blown fibro in a 45 minute time period...while watching TV. I thought it was rheumatoid arthritis because the pain was symmetrical. Of course all the searching started. Thank God I didn't know how to use a computer at the time so I couldn't use Dr. Google, but I read medical books. I had one and I checked out every ache and pain I had and my body kindly cooperated by giving me symptoms of things I didn't have! I had such anxiety over all of this. It's hard to be told you have a lifelong, chronic pain illness that has no cures, no really good medications, and the doctors don't know what is causing it!

I even went to the extent of losing my colon over my search for the "real" cause of my pain. I talked to my Internist back in another state and mentioned the possibility of Lyme disease. They didn't have tests for it since they had just discovered it. But they were treating people with Tetracycline to kill the bacteria from the tick bite. I knew I was allergic to that medication and that it caused bleeding internally, but my doctor told me I would be fine. I did what he said to do, and because of my Crohn's disease, my colon became cobblestoned with bleeding ulcers and had to be removed because I was bleeding to death. (This is one of the reasons I now go with my gut feeling and don't do everything a doctor tells me to do. I think it's important to listen to my doctor and I usually do what he suggests, but if my gut feeling makes me very uneasy, I usually decline the suggestions. I then do research so I can make an intelligent decision on the medication the doctor has mentioned.)

I was in church one Sunday and there was a sermon on fear. It's then that it dawned on me that fear was causing the anxiety which was causing the stress which was adding to my pain. According to the scripture used, I was to have power, love, and a SOUND MIND. I had anything but a sound mind! The scripture the minister used can be found in my signature. I threw away the medical book, which was extremely difficult for me to do by the way, and moved forward in my life.

I turned my fear over to God and started to recognize when it was creeping back into my life. I would get busy focusing on other things and the fear would leave because I wasn't "feeding" it. I felt so much better doing things this way and pretty much have eliminated fear from my life...and the medication that went with it. It will try to raise it's ugly head occasionally but I kick it to the curb. After all....I have power! It's really amazing what we can do when we put our minds to it.

I'm far happier living with this chronic illness and not fearing it. It gives you a clear mind and gives control of your body back to you. Getting rid of fear got rid of anxiety for me and also has helped me not only accept fibromyalgia but also live successfully with it. I don't worry about it (that causes stress which cases pain) and I have hope that they will find a cause and then a cure some day. Meanwhile, I take one day at a time and live it to the fullest. Most every day is a good one for me.

I hope this helps you some. It really has made a huge difference in how I deal with fibro. Of course I do take over the counter pain meds, supplements, gentle exercises, and pace myself. All this helps too. But at least I'm not looking for diseases....I'm out enjoying my life.

Sherrine

Makeupmama, I was going to comment on your exercise post and saw this one too. you are not alone with these concerns. I started trying the exercises the others mentioned. I started 5 minutes of walking and then light stretching and then rest on my feet with heating pad. Real slow is so hard for me. Since I used to excercise and push myself and it felt good . Now even if I feel like I can do more I'm going to try not to. What I find difficult and don't know what I am doing wrong because I get to exercising regularly but then Bam, a flareup comes on and everything I was doing is trashed. I stay flared ups so long that I have to start all over again and I feel like I never get to reach my goal.

I am also frustrated with this diagnosis. When I was first diagnosed, I wasn't happy and thought , the doctors don't know what's wrong with me and they put me in a "catch all category". I tried to ignore it. But my condition got worse and eventually couldn't work anymore. I started looking online and found that it wasn't a catch all category. I could relate to alot of the symptoms.

Now I'm praying for the right doctor . Whether it be a doctor that finds something else or helps me manage this condition better . Because my symptoms are getting worse . I think that maybe I have more issues than just fibro but I don't know. It's hard for me to deal with because of the unknown , I don't really know what I'm fighting against in this battle. The one thing that does stay consistent is stress on my pain levels. What makes me feel better is knowing that God will use this for my good . I don't know how but I'm not God. And I hold on to his promises Romans 8:28.

Thank you so much everyone for your replies! This board is really great and SO helpful. It's nice to know that I am not alone.:)

Myself, that's interesting. I'm going to look more into this "magical thinking" but it certainly makes sense.

Sherrine, I can really relate to your story and it really pushes me to have faith. I do NOT want to live in this fear for the rest of my life. I have been praying and praying for answers and/or acceptance. It's just been very difficult. Thank you so much for sharing. It really helps me more then you know.

Karen, Yeah, I can imagine how scary that was for you! I hope everything is okay with your liver or at least reversible? I did better today and felt better this afternoon. I had lunch with a friend and visited some local antique shops. It was nice to get out!

Purple Lynx, I too am looking for a better doctor. My doctor has taken me as far as she can and has been very helpful but I really need to find someone who is knowledgeable in Fibro! Praying that we God puts the right doctor in both our paths!

Loring, I agree 100%! A couple of issues have turned out to be NON fibro related in the last couple of months. My stomach pains were gastristis which has gotten MUCH better and the weird ringing/fullness sensation in my ear was just fluid. So, lesson learned! I'm kinda over paranoid about new health issues anyway so I tend to call the Dr. right away when something new pops up. My fibro pain is very particular and has a simular feeling no matter where it pops up so that is helpful.

I am glad you got out. I have a tendency to stick to myself a lot. When I go and visit somebody, it takes me forever to leave my home. I have become a hermit. Glad spring is springing, I will get out more. I always feel better when I do.

Keep doing things you enjoy. Sometimes we move a bit slower now, but I have gotten use to that.

Take care and have a good evening...

Hugs, Karen...

Julie, that's a good point and I agree. I really hope that they continue to dig deep to find what the cause of this is and hopefully even a cure. It's very difficult to have a syndrome that many doctors don't even take seriously, are no definite answers or cures. It's all just so foggy. No pun intended. Lol

Myself, Yes...I'm definitely an overthinker too! That certainly makes sense and I think it IS hard when we have this condition that still doesn't have a lot of answers. I'm definitely an "answer" person too and the unknown scares the crap out of me. I'm learning though - sometimes these things happen in life and we just have to make peace with it and accept it. I'm trying...

Thank you so much for explaining that to me!:)