The emotional rollercoaster after diagnosis - Fibromyalgia Message Board

stac8454 · 12-01-2007, 11:54 AM

After so long with no diagnosis.. I finally got one in July of this year. At first I was so happy, just to have a name for what was wrong with me. That soon faded as reality started to hit me... I have a name for it but there is no cure. I'm never going to get better. I'm going to have this the rest of my life. Oh my goodness what am I going to do? I have just barely been hanging on to this full-time job which I love. I can't go on working feeling the way I do and knowing this is never going to go away. But I have to work to make money. How else can I get by? I could apply for disability. I researched it a little and was only more disappointed because it seems most people get denied anyway. Plus you have to be NOT working for a certain amount of time before you can even apply. Ok, so what do I do in the mean time? Should I continue to drag myself to work everyday? Should I quit? I tried to take a leave of absense, but was denied. What do I do? I am so sick, yet I still expected to go on as if nothing is wrong? What the heck am I going to do? I went to family for advice and they said I should not even think about quitting my job. That I cannot let it get me down and I need to just keep on keepin' on. What? ........WHAT?!!!!!
The more I opened up to family and the more responses like that only caused me to withdraw. I felt alone. Nobody understood me. Then I started thinking even further ....
I'm only 30. I'm married, but we haven't even started a family yet. .. and this still an issue for hubby and me... Oh gosh, if I can't hardly work now..how in the world could I work if I was pregnant?

My saving grace has been the very few people that have been there for me though this.. Gosh, just being there, just listening..not judging, not even giving advice, but just the fact they were there for me helped.

I tried an online support group at first and I felt so horrible I didn't even have the energy to type, read or participate much at all. I wanted a real live person to talk to me about this. LUCKILY I got in touch with an old acquaintance..who I found out had FM also. She told me about the doc that helped her. I went to her 6 weeks ago...and now, 6 weeks later I am doing so much better mentally and physically. I am in no way cured...but I have a few good days now that I didn't even have before. I have energy to get on here and type this long post. I couldn't do that before.

There is just a cycle you have to go through when diagnosed and it is a grieving cycle. You are grieving the loss of a healthy life you once had... and that is absolutely true. I didn't really believe it at first, but now I do. I got through the dark tunnel and I see a light. I just had to accept that life will be DIFFERENT than I planned, but it can still be good.
I'm definiltey still learning and I do have my dark moments when I feel so lost and alone.
What helps me the most is knowing someone else who has fibro and can relate to what I am going through....just someone to call when I'm having a bad flare or a bad day who totally understands.

I would really like to joing a live support group, but I haven't yet. I think that's my next step.

The problem I have is..... my world stopped/changed, and the rest of the world didn't.. and I don't know how to manage it...I don't even know what changes to make or what to do.... This is not normal..not something I learned growing up. So, learning to manage life with fibro is the key I think.

..and just to let you know. The six week treatment I have done is Glutathione/ATP injections. I go to a doctor in Houston who specializes in Chronic Fatigue and CFS. Dr. Patricia Salvato. These injections do not help with pain, but they definitley helped with brain fob (saved my job) and help with energy levels. Glutathione and ATP (adenosine triphosphate) are natural antioxidants in the body already... these levels are low in people with FM. So, these injections are a natural boost to the immune system. I have had no bad side-effects at all aside from bruised and sore where I get the shot and the shots hurt too but they are worth it.

jojim · 12-01-2007, 05:55 PM

hi i know exactly where you are coming from, we all go throu that and its nice when you start seeing the light at the end,we can still all have a life but we just need to listen to our body. when it tells you no then its no. slow and steady wins the race.we just can't take life for granted anymore, it would be good if family understood but its one of those things no one can see there for not real,not sure how long you have hade it but we all learn how to cope in our own ways. i've already had my childen so i dont know what happens if you get pregnant with it. BUT i was told it lets up when your pregnant dont know how true it is,i'm sure people on this site can advise you on that. anyway mate, stay close to people that understand,and dont waste time or energy trying people who dont,it will only get you down, chin up and love the life you have now. may you have pain free days and lots of love and support, its nice to know i can come here and chat with my friends

rosebuddy · 12-02-2007, 06:17 AM

Thanks for sharing your story. I too had to go through a grieving period as I was acutely depressed and weepy at onset of fms and cmp diagnosis. Was in pain of 9 and 10's with compressed nerves. As the cmp was treated, that type of pain lessened and went away with trigger point injections and physical therapy. At onset, I had to stop working per my pcp's orders. My long term disability insurance at work was UNUM and they would not provide benefits. They have been sued over and over for this. Anyway, I began art therapy and went through the grieving process with an art therapist. I am so glad that i did. I too came out on the other side.

I am on SSDI but have other diagnoses besides fms and cmp, including bipolar, ADD, and anxiety disorder.

kirstee · 12-02-2007, 04:47 PM

Your life story rings true for anyone with this condition. I am so sorry you have had to suffer so much! But, you can do this, trust me. You are just beginning your journey and you will find coping methodologies and such that will help you. I want to suggest to you that you try the Guafenesin Protocol. Read Dr. St. Amand's book "What Your Doctor May Not Tell You About Fibromyalgia." You will find practical help, as well as how to utilize this medication.

I have been on this medication for 4 years, and have had great success. I'm 90% better than I was before I started the medication. I can swim, ride a bike, ride my ATV, go hiking - nothing, including FMS, stops me.

Blessings,
Kirstee