Anybody who is still struggling with the fight with fibromyalgia please get in touch with me, I have been diagnosed nearly a year and find I still really suffer and struggle mentally to deal with it… Would like some support from someone who actually know she how bad this condition is and would love to be a support for someone else’s:) #fibroawarness #keefighting
Hi Jodie!
I am sorry to hear you have been struggling with the diagnosis. It is entirely understandable. I am coming up on one year from my diagnosis as well. It is definitely tough to wrap your head around. I have had a really hard time dealing with the fact that I may be in pain for the rest of my life. I am hopeful for new treatments of course but it is a reality we all may face. It scares me quite a bit. The people in this community have been a huge support and consistently help me face the tough days. There are people on here who have suffered for years and are still fighting. I would like to believe that if they can do it, I can too. I've really learned it is a one day at a time condition and we can only do what our bodies allow. We are all here to support you when your body fails. I love the idea of us all being Fibro warriors because we really do fight every day. Please always feel free to reach out to community for support.
Gentle Hugs!
Hi . I just stopped in to say hello !! And to send you some
HUGGGGGGGGGGGS
Suzie
Thanks both, feels so helpless sometimes life seems such a fight now and I’m tired I’m really tired xx
Hello Jodie,
I am so sorry to hear about your struggles with this tricky condition, I think we all probably hate it! But everyone on here will be able to relate to what you are suffering, and we all understand. So please, feel free to vent, ( it saves our families having to deal with that), share your experiences, and you will find other members will do too, with great advice and information. As time goes by you will find ways to manage this! For me it was about changing my relationship with the pain, I came to a point where I decided I would not let it define me. I did not do this alone, but I had to have an open mind to try other things. Please feel free to ask me any questions. This community is a very positive place, and we can help you!
Take care, Anne
It’s up and down with me xx
This Fibro Community has been such a HUGE source of support! I too have been struggling with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder.....been diagnosed now about 1 year out....not sure how long I had it prior to that! Dealing with the specialists has been trying! It is good to know that we have all experienced this to some extent! It is even better to know that there are so many others that truly understand what it is like to be in "our shoes"!
Hug HUGS!!!
Hi Jodi . I wanted to tell you that it was very nice chatting with you earlier in the chatroom
I deal with some part of Fibro everyday. I was diagnosed in 2013 and have yet to find any real relief. It is a very frustrating condition.
Thank you Suzy I have had a much better outlook on life today lol Iv had a very good day 
️
And I know… Fibro has got to be the most underappreciated condition I have ever known, nobody could have explained this struggle to me in words, you only know it truly when you get stuck with it for life xx
I hear you! I am sooo frustrated, emotionally and physically drained and tired. I've been dealing with the pain for a year this month actually and it's been awful. I can't imagine how hard it's been for people who have been struggling with this for 20-30 years. My whole life has changed. There's never a day without pain, just days that it's not as bad. The last flare I had a couple of weeks ago left me crying in bed and about ready to throw myself into an active volcano! Anyway there are good days, bad days......and really really bad days. I'm also frustrated because my PCP doesn't seem to want to prescribe anything for the super bad days where the pain keeps me up at night. It's almost as if she doesn't believe I have pain. I have tried Cymbalta, Effexor, and Savella - none of which I could tolerate. I was prescribed amitriptyline by my rheumatologist for sleep, but had a paradoxical reaction to that as well and it actually kept me up all night. Currently I take gabapentin 300mg three times daily and a 400mg tablet at bedtime. I have tramadol for pain (woo hoo - not), and vit D 50,000 units weekly for low D level. I have gained a ton of weight from the gabapentin. Good news is today my PCP FINALLY agreed to prescribe Norco for severe pain. (She gave me a script for 20 and told me it had to last for at least 3 months). As I've heard other people with fibro say, it's so frustrating because on the outside we look like nothing is wrong so people can't understand how the pain can be so unbearable, and also ever changing in severity and location. I don't know about you, but sometimes I can't even describe what the pain feels like. I swear sometimes my body hurts in ways I never knew it could. Anyway I'm pretty sure I know exactly how you feel and I've been to the point where I've said, "God, if you want to take me today, that would be just fine with me." All we can do is take one day at a time and be grateful for the "good" days. Hang in there!
Hello Shortstack,
You paint such an accurate description of Fibro, (for me anyway), yet can still reach out and give encouragement. Thank-you for that. Despite everything you have remained positive. It does take a while to find the right meds, and treatments. Wishing you well.
Take care, Anne
thankyou anne, I don't know about you but my symptoms are so severe... mine came on quick and strong from nowhere a year ago and seems to be worsening at a rate I cant keep up with.. sending you bighugs <3
Very accurate description. The pain can really wear on your mental state after awhile.
I just came out of a 2 week flare up. I was in bed for 1 1/2 weeks because the weather dropping from 70 to 40. It put me in bed. Most people think Fibro is sorta like arthritis and we just have to cope with some pian. They don’t realize all the other symptoms. The Fatique, constant stabbing, burning, aching, we have with us, that nothing will take away.
I’ve realize, I don’t have a choice, I have to keep going. I wish sometimes I was dead. In heaven. Living with this kind of pain and not knowing why, is hard.
You will be in my prayers
Melody
I can totally relate to you. I live in Virginia and this month has been unusually cool and rainy. I've been in pain for pretty much the whole month. And of course with the pain comes the utter exhaustion. I work full-time and it takes every ounce of energy to make it through the week. Weekends are now 2 days of recovery rather than 2 days of fun time. I have been coping with this for only a year and a half an my whole life has changed. I have missed fun family get-togethers due to pain and now sensitivity to loud noises (these people get crazy! lol). I'll plan on going shopping and vacuum out my car and maybe see a movie, get some laundry done, put some plants on the balcony.... only to realize I have no energy to do half of what I wanted to get done. It feels as if I have no "life" anymore. I must say I can relate to just wanting to be dead and have all the pain gone. As it is it's just one day at a time and being thankful for a "good" day every now and then.
We are not alone in this struggle
Take care,
Michele
Rosebudsmom said:
Very accurate description. The pain can really wear on your mental state after awhile.
I just came out of a 2 week flare up. I was in bed for 1 1/2 weeks because the weather dropping from 70 to 40. It put me in bed. Most people think Fibro is sorta like arthritis and we just have to cope with some pian. They don't realize all the other symptoms. The Fatique, constant stabbing, burning, aching, we have with us, that nothing will take away.
I've realize, I don't have a choice, I have to keep going. I wish sometimes I was dead. In heaven. Living with this kind of pain and not knowing why, is hard.
You will be in my prayers
Melody
I have noticed a HUGE difference by eliminating anything with artificial sweeteners and corn syrup in my diet.
It was very hard to give up my Diet Coke, but I had a HUGE flare up with even a few sips of it. You might want to take a look at your diet and see if by eliminating just one thing you notice a difference.
Gentle hug,
Pam
Jodie hang in there. I was diagnosed about 3 years ago, I had troubles throughout my teenage years and early adult hood with many stages of fatigue and flu like symptoms that came out of no where and took forever to subside. Then one day… They all decided to stay. I am sure being in the throws of pain you have done your share of research I just want you to know there are many options out there and the most frustrating part is finding the one that is right for you… .Took me a long time, All kinds of meds, all kinds of therapies, exercises, you name it. I understand
I’m with Jodie, the struggle is real. Sept will be 1 yr of being diagnosed. Everyday is a different struggle. Except for the last 5 yrs I was going non-stop all day long, raising 4 kids. It’s an emotional roller coaster, I feel good one day and attempt to take advantage of it, and the next morning I’m so stiff it takes everything in me to just get up. My brain has this huge to do list and I’ll start and my body days not so much. I’m still in the beginner stage of today I’m pushing the limits I’ll be fine and then I really struggle. Ignoring my body isn’t working for me, when ur tired rest that’s all there is to it. Re Pam stating not drinking diet coke, aspartame is HORRIBLE and if u look up the side effects to aspartame poisoning it’s eye opening. I only drink diet Pepsi once in a while it’s aspartame free. My thoughts are with you, no one deserves what we all go through
I am in the midst of a struggle where I can relate to what is being talked about. Explaining the pain to people is so difficult. I find myself so angry at my body and so guilty about not being able to do more at work, home, with my husband and two year old. I am very tired of having these two emotions along with the chronic pain. I joined this group to find support and give support. I have been seeking out support and reading good books to refresh my outlook, attitude, and to regain Hope! One book that just came out was “My Journey Through Chronic Pain” by Peggy Robinson. It is specifically about Fibromyalgia. Thank you for the post and I am definitely going to cut out the artificial sweeteners and see if that helps.
Amber
Thanks for all the reassurance, I knew I was not alone with my struggle with this disease, but it's a fresh reminder that it's not all in my head.
Huge gentle hugs to all the fibromyalgia suffers. It is such an awful disease.
Pam