Recently Diagnosed - What does the future hold?

Hi All, I am in the U'K' so hope it's ok to post on here! I've recently been diagnosed with Fibromyalgia after many years of being told the pain was all in my head due to long standing Depression. It turns out after years of not knowing what was really wrong (I knew it was more than Depression) that as well as the Seronegative Inflammatory Arthritis I already knew I had that I also have Fibromyalgia and most likely Chronic Fatigue Syndrome/M.E. as well. I also suffer from Hypothyroidism and Irritable Bowel. Whilst it's a relief to know that I'm not going mad and my pain is real and there is a reason for the fatigue and brain fog, I wonder what the future holds for me? I have 2 children to care for at home who are at an age where they should soon be able to manage at home when they aren't at school if I were to try to get work (money is tight!). At present I am lucky to be receiving sick pay but I don't know if I will be entitled much longer with the changes the government are making to sickness benefits. As I have a wonderful Husband he is expected to cover all the bills as he works full time. Unfortunately as we are in a mortgaged property we will be entitled to no financial help at all once I am switched over from Incapacity Benefit to the new E.S.A. Benefit and I really don't know how we'll cope as I know we will lose our home and that is going to affect my children emotionally as they really want to stay where we are, they are happy and settled as are we. I also don't know how I would cope with packing up and moving, I think it would finish me off as I'm struggling to cope now and other than my Husband I don't really have a support network or anyone to help. I was hoping to go back to work once my new medication was working and my mood hopefully lifted as this would hopefully provide more than the sick pay which I anticipate will soon be stopped anyway, but I don't know how I would cope as once the fatigue sets in I can lose days/weeks of my life sleeping. Do any of you manage to work with this condition? The other thing I am wondering is about college/re-training. I don't know what I would like to do if I were to go back to work or what I would realistically be capable of doing, I did try a college course but had to give up as I just couldn't remember anything I was reading/being taught, the information just does not stay in my head! It may sound weird but as a bit of therapy as I am very limited as to what I can actually do, I was considering attempting to learn Spanish as I hope to holiday in Spain next year and I hope that if there is any way that I could absorb the learning that it would keep me busy and away from the food cupboard as my comfort eating has I'm sad to say led to me becoming morbidly obese. Is there any way of being able to beat the Fibro Fog and learn?

If anyone has any information/experience they can share with me on these issues I would love to hear from you as I feel very isolated as I do not know anyone else who has Fibromyalgia, Arthritis or who is Morbidly Obese that I can talk to. I appreciate that things may be a little different in America, but would still be grateful to hear your thoughts.

Thanks for your time!

Jacs 

I know you must be scared on what the future holds for you. I went through the same thing. It took almost dying before I stop work. I cried, worrying over my house, car or how could we function on one income. I finally came so sick with Fibromalgia and depression that I had no choice to stop work. I filed for disability and got it. I still new that it was a large lost of income being on disability. I didnt have a choice anymore. Do you know I didn't lose anything in possessions, but gained so much more. My kids had a happier mom, a functional mother and healthier mom since I had to stop work. Now on those days that I struggle with Fibromalgia I can rest and by doing this my pain is so much better. I know each of our financial situations are so different, but if you have to move to a smaller place at least your kids will have a mom and they will understand down the road. There isn't a day goes by that I think how close I came to death because I was afraid I would lose everything if I stopped work. I thank my God everyday for providing for my family.

I work at a hotel doing overnights. Its not really great for my fibro, but I can sit down a lot more and have a pretty easy go of it because there's not a lot asked of me, except that I go above and beyond duty with some areas. I too pretty much eat, sleep, and work and would be homeless if I didn't help my husband in bringing home the bacon. I have a very loving and mostly understanding husband that supports me and helps me along with my pains. Sometimes when we are leaving the movie theater or a restaurant and my legs all of the sudden on in pain and I need a cane, but have none he can be a dick and just tell me to push thru the pain to get to the car faster, but I know there's no going faster and pushing thru it. I would honestly start out with a time time desk job in something that I know I could do. I forget where I saw the article but I saw a medical article that talked about doing puzzles and repeatedly putting say your car keys in the same area can help with fibro fog. I think if you search on big or google "methods to cope with fibro fog" that it will bring up some articles for you to learn how to deal with the fog. I always write down notes with almost whatever I do. That way I help in making it easier to remember whatever it is I'm learning. "Fibromyalgia for dummies" may be able to help you too. As for the future out come from what I've read is that we can live with it our whole lives or a major part of it or we can start out with it, go into remission and then when you least except it it can come back. I have also read that you can let it get you down and go down the slippery, pill-popper slope or you can rise above and just accept taking day by day and trying to live comfortable as possible life. I'm mostly the latter. I hope to have kids soon when I can finally get a day job and make my body stronger. I live day to day and just enjoy the times that I can relax and enjoy my wee family. Too often people or the normies take for granted that you are going to always be able to get well rested on the weekends and be lazy one weekend and then crazy busy the next. That they can just do whatever they want at the drop of a hat without ill affects. I enjoy that I can just lay in bed all weekend if I want and my husband will actually highly suggest I lay in bed and watch Sons of Anarchy (motorcycle club crime drama show. can't remember if its world wide) while he entertain himself with his xbox 360 or PC games. He's a big, but gentle nerd and I love it. I also say this as fellow fibromite, but they have said online that extreme weight gain of I think 50 pounds or more over what is considered normal for your height to make the fibro worse because of the stress it can bring. However they have said its also sometimes hard to maintain a proper weight and basically that we have a big struggle on our hands. I know, great isn't it? they acknowledge that we have a hard time with the excessive weight, but then also say that they know we have a hard to exercising. To me its like them tip-toeing around saying that its hard to be a fibro patient. I felt defeated after I read articles on my google search for "fibromyalgia weight loss tips" search. Just wish we could get ahead of this crap. I hope this helps. I'm defying my body and typing while feeling sick to my stomach. So try some word searches and that kids memory game on the computer or the physical game and take one day at a time. Communication is also key to this with your husband. I always write down what we come to agree on with big stuff so I can go to it and remember what we agreed on.

Don't give up!!! It took me four long years before I had a diagnosis, but once I did, I got better. I had given up by 1997 because I had heard so many times from doctors that it was "in my head". Unfortunately for me, I had a psychiatric history (like you) since I had PTSD as a result of extreme childhood trauma. Once the doctors saw my chart and my psych history, they immediately dismissed my pain. Until, one day for a check up I saw a young intern (an angel?) who had read about fibromyalgia in a medical journal.

I changed my diet radically (cut out white flour, white sugar, meat, dairy) and added whole foods, exercise and limited acupuncture (I was on disability and paid $7 a session at the student clinic, still expensive for me then). At the time, I didn't have enough $ to add nutritional supplements, but those can be important too. As I said, I got better. I felt some change in my pain within a few months. It took a long time to be free of it for days at a time, and then for weeks at a time, and then for months - but it happened!

I'm only on the board because I had a flare as a result of ivf drugs. But before that, I hadn't had any fibro pain since last December. I have gone years in the past decade without pain. I know fibro is tricky and nothing is guarenteed, but I would still encourage you to do as much as you can for yourself knowing that things can get better!