I am disabled have joint hypermobility, fibromyalgia, arthralgia, chronic fatigue, fibroids, psoriasis, congnitive delay (fibro fog)
Ok I have been living with for 14 years now only got Fibromyalgia confirmed in 2012, Sat in the office with tears rolling down my checks and when i was told they was no cure.
I look back on that day as hard one. One that changed the course of my life to an extent as I was sure it was RA and had treatment plan in my back pocket.
So it took me a while to able to even say Fibromyalgia never mind accept it,
Some days i still find acceptance of all this hard but like most have google it inside out and try to find answers and a ok path. I do have a lot of hope that there will be answers to what we need in the next few years and do think we will see breakthroughs in our life time. This is my hope that although right now there is not proper treatment that in time there will be.
What brings me strength in this life is my son most of all, he will never know how much he has given me strength and will to keep fighting this.
I enjoy photography it is one of my passion and also writing when my health allows. If i have any words of wisdom it would be this my strip us bare at times but it can never take away who we are as person. We might seem to lose ourself's from time to time. Finding peace when storm is key to come out the other side. Taking things moment by moment little by little has helped.
My moto its a mix of sayings i put together
~<3~ Even after the darkest night comes the new light of dawn, let that light lift your heart little but little. Turn your face towards the sun and let the shadows fall behind you. This too shall pass ~<3~
~<3~ The journey of 1000 miles starts with one Step ~<3~
Hello and welcome. I also have hypermobility and osteoarthritis of some kind. I feel that I am not the same person as a year ago, and that we all have to adapt to the new diagnoses. I was diagnosed last June, soon after it started. It has opened my eyes to the negative and judgmental person I was, and feel I am a better person today, despite the pain. I look forward to getting to know you.
Hi Lorraine and welcome. I was officially diagnosed about 7 years ago and I know I had fibro long before that. Since that time, I feel like I've been a receptacle for pills and most of my hair has fallen out. Just one more thing that makes it hard to deal with. I bought 3 wigs and haven't worn one yet. What the best thing is about this disease is that my husband fully supports me. He pretty well knows what I mean when I say, "I'm being stabbed in the leg right now". I also have a problem with balance and have fallen several times resulting in spinal fusion surgery and a broken foot. I rely on God to help me through the bad days. Good days are few and far between, but I am not going to let this condition take the joy out of my life. Do what you can to refuse to let it take over you.
Hi Lorraine, welcome! I was officially diagnosed 3 years ago after more than 8 years in pain, I also have gait issues and got spinal fussion after a fall. I am 36 years old and already disabled! )-= It is hard to accept it but it gets easier if you come to terms with it. Cheer up! See beauty in a different way and laugh, have fun getting to know this new YOU!
Welcome Lorraine to a great place of support and friendships. I love your mottoes and outlook on life, very up lifting and motivating. Sometimes when I face an obstacle that shows me what I can't do, I change it to celebrate all the things I CAN DO!!! I too look forward in getting to know you better. Hugs
Hi Lorraine. I am sorry to hear of all your troubles. I am 41 and I've had FMS since 2007. I guess I had the opposite reaction when I got my diagnoses...my aunt had RA and I watched her struggle during my childhood, and after I was about 19 she never walked again. She had a bad case, and a family that didn't help her much, so she was bed bound for over 20 years. I guess it's just a matter of what you are more afraid of. I also had a good friend with RA and I could see what the meds were doing to her, though she could still walk. I also had a friend with lupus end up in the hospital several times so I guess I considered FMS the least scary of all the things I was being tested for. All of these conditions are painful, and unfortunately there don't seem to be cures on the horizon. You have so many other conditions compounding things for you - I will make sure to remember you in my prayers. I think each of us has that "one thing" that is the last straw, the thing that just makes you the most upset. For me it's falling. I fall often and even when I don't, I bump into things so I have injuries from falls a lot. I don't really know why but for me that is the most humiliating part of FMS. I've found that a lot of people on this site have had questions for me about their disability cases - I have finally won mine, so if you are still on the path to getting that, please feel free to ask me anything you like. Or any other question! :)
Meow no one knows the path we are walking till they are on it, dont put yourself down im glad you feel that you are stronger person now. One thing i think that has made me more aware is the simple things in life not that i did embrace them but some how now it has stronger meaning to me. I try to grab these moments in my photos when im able to get out. Be kind to yourself looking forward to getting to know you too.
Meow said:
Hello and welcome. I also have hypermobility and osteoarthritis of some kind. I feel that I am not the same person as a year ago, and that we all have to adapt to the new diagnoses. I was diagnosed last June, soon after it started. It has opened my eyes to the negative and judgmental person I was, and feel I am a better person today, despite the pain. I look forward to getting to know you.
Welcome to this site Lorraine..it is the only place that 'I' have found the support and understanding of this dreaded condition. It took quite a long time for me to be diagnosed with Fibromyalgia and I thought I was going crazy with the various pains PLUS the endless exhaustion & fibro fog. As of yet....my Dr. can't find ANY meds my body will tolerate so I just try to keep on keeping on daily. I've also had a botched spinal fusion..so something else to deal with.
Like 'Meow' says...I am not the same person I used to be am always looking for something good to come out of all this. I am currently in a battle with Diverticulitis....not fun at all but for some peculiar reason...the mega antibiotics I am taking for THAT is keeping the Fibro pains at bay. Odd....even my Dr. is baffled as to 'why'.
Anyway..I sure hope you find some good support and suggestions here Lorraine.
Singingtrees i agree and what has helped me in life is seeing ok i cant change this who can help me, but i have also found acceptance a big part and working from where im at not where i wish to be lol looking forward to getting to know you too
Singingtrees said:
Welcome Lorraine to a great place of support and friendships. I love your mottoes and outlook on life, very up lifting and motivating. Sometimes when I face an obstacle that shows me what I can't do, I change it to celebrate all the things I CAN DO!!! I too look forward in getting to know you better. Hugs
Anmarllo thank you for your post, 35 here so we are not far apart in ages, i think for me it more the building new dreams, which im working on little by little nice to meet you :)
Anmarllo said:
Hi Lorraine, welcome! I was officially diagnosed 3 years ago after more than 8 years in pain, I also have gait issues and got spinal fussion after a fall. I am 36 years old and already disabled! )-= It is hard to accept it but it gets easier if you come to terms with it. Cheer up! See beauty in a different way and laugh, have fun getting to know this new YOU!
Hi Susu get that wig on :) and go out with your head held high, i do lose hair but to extent was this med or med you are on that has done this? I hope you having a few good days i can relate so much to to few and far between, we need count our blessings that we have that is what brings me strength and hope it gives it to you too, nice to meet you too
susu said:
Hi Lorraine and welcome. I was officially diagnosed about 7 years ago and I know I had fibro long before that. Since that time, I feel like I've been a receptacle for pills and most of my hair has fallen out. Just one more thing that makes it hard to deal with. I bought 3 wigs and haven't worn one yet. What the best thing is about this disease is that my husband fully supports me. He pretty well knows what I mean when I say, "I'm being stabbed in the leg right now". I also have a problem with balance and have fallen several times resulting in spinal fusion surgery and a broken foot. I rely on God to help me through the bad days. Good days are few and far between, but I am not going to let this condition take the joy out of my life. Do what you can to refuse to let it take over you.
Bless you Lorraine, I have major depression, and anxiety, spinal disorders, and disc degeneration. And now Fibromyalgia. I hopeand pray someday I can get help. See I am working, and can't get help. I work in so much pain I can't stand it, but it's the wait for disability, I don't want to lose everything waiting. I need my medicine, my home, it's not much , it's a older mobile home, but I don't want to be on the streets. My husband is 62 fixing to get his social security, and has his own health issues, me I'm 55, somedays I feel like I'll never make it to rest my body. And I can't find help. But I feel for your pain, I know your pain. I always pray for just one day, just one without it. Take vare of yourself, my prayers are with you.
There has been trail i am sure read before where they did you anitbodies for RA to treat it, it helped the person, what i would say to your doc, sometimes when other things are going on in our body its like we our bodies forget fibro is part of it, but i found one summer when on anti b and the dry heat that this helped me alot, also pregnancy but come back 1000x worse after and takes a long time to even get back to where you where before, they said its more down to baby than your body, i dont know why but how it was for me. So I am glad just now your pain is little less i hope you get some meds that help. Mine just dull it down and make wearing clothes bearable i know how many of you will understand this, hot baths and heat packs. I think we should all become fish in our next lives :)
Geranium said:
Welcome to this site Lorraine..it is the only place that 'I' have found the support and understanding of this dreaded condition. It took quite a long time for me to be diagnosed with Fibromyalgia and I thought I was going crazy with the various pains PLUS the endless exhaustion & fibro fog. As of yet....my Dr. can't find ANY meds my body will tolerate so I just try to keep on keeping on daily. I've also had a botched spinal fusion..so something else to deal with.
Like 'Meow' says...I am not the same person I used to be am always looking for something good to come out of all this. I am currently in a battle with Diverticulitis....not fun at all but for some peculiar reason...the mega antibiotics I am taking for THAT is keeping the Fibro pains at bay. Odd....even my Dr. is baffled as to 'why'.
Anyway..I sure hope you find some good support and suggestions here Lorraine.
Wow Jade thanks for your reply, I think the hardest part is that at time I was sure it was RA and had a plan of attack that was taken from me, to be left with nothing no hope a leaflet of somewhere miles away i could never get too, I understand how bad it can be RA, I know alot people with it too, So I do feel bad if it made it sound less but it more the course of action i was looking at. To be left yet again seeing everything get worse and not a thing i could do about it. I am going through a court case at present with disability any input would be welcomed im in the Uk, So not if you can help, but welcome any advice on this.
I hate that this is where my life is at but we can not let Fibro and disability define us, its a major part of us but we are always greater than what we face in life.
finding peace in a storm is a gift here if you ever need to talk also
Jade27 said:
Hi Lorraine. I am sorry to hear of all your troubles. I am 41 and I've had FMS since 2007. I guess I had the opposite reaction when I got my diagnoses...my aunt had RA and I watched her struggle during my childhood, and after I was about 19 she never walked again. She had a bad case, and a family that didn't help her much, so she was bed bound for over 20 years. I guess it's just a matter of what you are more afraid of. I also had a good friend with RA and I could see what the meds were doing to her, though she could still walk. I also had a friend with lupus end up in the hospital several times so I guess I considered FMS the least scary of all the things I was being tested for. All of these conditions are painful, and unfortunately there don't seem to be cures on the horizon. You have so many other conditions compounding things for you - I will make sure to remember you in my prayers. I think each of us has that "one thing" that is the last straw, the thing that just makes you the most upset. For me it's falling. I fall often and even when I don't, I bump into things so I have injuries from falls a lot. I don't really know why but for me that is the most humiliating part of FMS. I've found that a lot of people on this site have had questions for me about their disability cases - I have finally won mine, so if you are still on the path to getting that, please feel free to ask me anything you like. Or any other question! :)
