justmedeb (justmedeb) wrote in fibroinwomyn,

new pain member

fibro,s hell. but at least here in my state, oregon i've been able to find docs. but yes it's been a long journey and 20 years of diagnosis. i'm currently going thru the ssdi app. procedure and it's not easy. i'm now with cane for mobility, can't work, have no understanding, hell i have no friends and now no family except for my 2 daughters and
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I am 60 and have had fibro since I was 21. Many years with a lot of pain and tiredness. I strugged with work all my like. Kept working until I just had to crash. I worked for the federal government for 14 years then the VA state government for 5 and 1/2. I applied for SSD and just received it last month. They turned me down once and I tried again and got it. I was shocked. I feel because I am 60 and so near SS age that they just gave it to me. I hope you get it soon. Let me know. I hope you feel better. I suffer with it from day to day. Some days are bad some better but never "perfect". Take care.
thank you for your reply and well wishes. i've raised my girl's through so much pain and as you said "finally crashed". i pray that after 35 years of working so hard that ss will assist me now that i'm basically down for the count. living in this oregon weather i'm sure doesn't help much. but it's home and my children and grandchildren are here. so where else could i be. thank you and take care as well. hugs.

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Yes i do have them and have most of my life. They are pure hell and I have not ever found a releif that works for me as I have so many chemical sensitivities. I need quiet, a dark room, pain meds and a couple of days oh and a coffe can nearby.
The only time I never had any was during my second pregnancy with my youngest daughter. I felt so healthy with her it was amazing. Then of course it was two years later that they discovered I had RA.
And I added you as a friend just now so welcome to our little nightmare called Fibro. You should really go to the Fibromyalgia site as it is very informative and there are such agood variety of people there from all walks of life. You can also find some wonderful friends there. We have a great community and we have all lived with not just fibro but other diseases as well and share our lives and pain.
I looked at your info page and your journal. You sound like a sweet young person who could use a little more support too. I know i get so much help from my fibro friends too. Couldn't live without them to be honest. Don't give up as even though life is hard, I was diagnosed 20 years ago but still raised my two girls on my own, worked hard, sometimes 2,3 jobs to get by and still led a good happy active life for a long time. It's just been the last couple of years that I have become disabled. So life is worth living and take advantage of the time while you are young and the things that make you happy. If you have chances to be happy and have other chances to maybe feel better in other areas of your life grab them up. Ther are a lot of other young mothers on the fibro site that will certainly be there for you too. And some of them live with a lot of painful conditions with their fibro as well. We all try to be there as family for each other. Happy to be your friend and glad to meet you Sweetie.
Be well and definately join the Fibromyalgia site for further support. It's actually where we all eventually end up. Hugs:), Deb

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Hi Honey, Sorry it took me so long to get back to you as well, yep been down and not too well myself as of late.

Lyrica can be a good med for some but honestly I think in many ways there is still so much that needs to be learned in regards to Fibro needs. And pain levels although are similar in most of us there are so many factors I believe still go untreated. I have been on Neurontin (a sister drug to Lyrica) for about 5 years, it was initially prescribed for shingles and PHN, nerve pain. But I do feel strongly that Fibro has more to it than just as they say, nerve path receptors not firing right. Still doesn't explain so many of our symptoms such as the muscle pain and nodules of bound tissue directly affecting the muscle groups and causing such dibilitating pain. My only hopes are that because this med is now FDA approved it means they take us seriously and will continue to find better and better treatments.

As for the days in bed, oh Hon I can sympathize immensely with that and have for so many , many years. This is a pian that is so undescribable and hard for so many to understand unless you live it as we do. I'm glad to hear you find some forms of relief in a positive mind. It is hard and I know some days are just that hard. After so many years of suffering myself it has been so helpful to have friends who live it and understand such as yourself. We are not alone. Far from it, and most definitely the support and kindness of others who live this nightmare alongside us is probably one of the best gifts we can receive. Agreed? You're never alone Hon and I all too well understand.

Strength comes not easy and we can only grab it as it comes. And oh yes, the emotions play such a strong role in Fibro, sadly. Such a vicious cycle it causes.

Thinking of you always Hon and may you have many pain free or at least tolerable days to come. My prayers and thoughts are with you during the Holidays and and especially during each and every other day as well, as Fibro is not limited to Holiday seasons alone (if only).

Thank you for your kind thoughts and I wish you well and a very Merry Christmas. Thank you for your friendship and know mine is always here for you as well.

Many hugs and be well Honey, Deb♥