I went to the doc thursday and was officially dx. When I was driving the 2 hours it took to get to my appt. I kept hoping that it would be the light at the end of my tunnel of pain. My doc told me that this was the way its going to be. I have been reading all the positive comment that you all write. I'm glad I found this site. I feel like people think i'm faking it which really aggravates me. I am only 32 I hate feeling so old. The rhumy doc was blunt about it all. He told me the good news is that fibro won't cripple me. HELLO, I feel crippled every single day. I don't have good days. Its a nightmare. The mental anguish is getting really old. I have 2 girls that I can't even enjoy. I hate having to tell them that I can't because of the pain. My poor husband works overtime just to make ends meet. And because of my pain he doesn't get his "reward" for it. We are newly weds and it feels like he married an old lady!
Hello from an old lady that’s really trying not to feel old (lol). I’m sorry you ended up with fibro at such a young age, I was lucky mine didn’t start until my forties. It doesn’t have to be “the way it is going to be” there are medications, supplements and other things you can do,. Once all the options are explored (it takes a while) you may still have some bad days, but good ones too. Fibromyalgia hits different people in a different way and a different level. Don’t assume the worst, but realize you need to learn how medications and other methods and remedies work for you. You’ll need to take care of yourself and You’ll need to fight but you have at least three people to fight for and we’ll all be doing what we can to support you…
A lot of people don’t know what fibromyalgia is, there have been a number of posts within the last couple of weeks with letters to loved ones that help explain your issues. Fibromyalgia is real and a lot of members have had and in some cases still have an issue with people thinking they’re faking it.
This site has a lot of information, a lot of sharing (venting included), caring people, things that have worked for them and things that didn’t. We’re all some what unique in what works; but you’re not alone in what you feel
Gentle hugs
Sorry to hear about your troubles. I know that mind numbing pain. Nothing can describe it. Did they start you on any meds? There are so many you can try and if needed, see a pain doc for narcotics. I know what I am talking about. I am 41 and only getting relief (and great relief) from a strong narcotic. I do not want you to lose hope. These drugs all have their side effects but you need to live today and enjoy all those blessings. Please speak up for yourself with the docs. Keep us updated.
Maria
I am only 32 as well and was just diagnosed in Nov 2012. I had a really hard time accepting that this is a life long ailment. Once I accepted that I started to realize the different way that I needed to live life. The great thing about fibro is it helps you to enjoy every day as it comes rather than always looking to the future. It is weird but fibro was a blessing in that I slowed down and started to enjoy my life for the first time.
I hope you find what works for you. My treatment is both medicinal as well as holistic healing. If you have any questions please feel free to ask.
Desiree
Desiree
I would love to learn about your holistic healing experience. If you would like to share some things please send me a private message..
Thank
Maria
I’m 46, but i strarted with fibro since my twenties, and it has been hard to adjust to my new lifestyle. I have an eight yr old, sometimes he will tell me i cant do a lot of stuff anymore, and it does frustrate me, on top of that i have had eight mini strokes. I call it the invisable illness. Unfortunatley we have to more or less go through some stages, and the first one is the hardest, acceptance 
I really hope you get to feeling better, and we have to be fighters.
Hi Mrs R,
Thanks for posting right away, it's the best way to get to know everyone! We understand how you feel, and there are so many young wives and mothers for you to relate to here. Be sure to check out the groups with the group, there are over 40 of them. The support and info that we give each other here is a life saver!
There is so much love and understanding and good information here, it will help you feel better right away, just to know you are not alone in this!
Wishing you well,
SK
welcome first of all.....i hope your rheum now has sent you to pain or put you on pain medication even just prescription motrin. I can say this...that a lot of how you handle chronic diseases is one's atitude and as hard as it may be try to find positive things in your life. I always realize that it could be much worse...there are much worse things out there.
Also did your rheum check you for auto immune diseases since they will be treated differently...one that is extremely like fibro huge difference being you can get better on it once you are treated. So worth to push your doctor to make sure they have looked for other diseases.
If pain medication does not help than ask to see pain dr. I know this is all over whelming...i was diagnosed with lupus(back in 1980's)when it was not even heard of by most doctors and was about to get married...so i understand. For first years, i was scared and in pain...i met old friend who knew how much being out doors met to myself and my husband and suggested i ride in to the back country....i did, i started hiking a bit more ..well first started walking than worked it into hiking with my husband than eventually i was backpacking again in my 40's! I have fibro and lupus plus other diseases ! So i hope this gives you some hope that you can make your life enjoyable...oh and i was still working part time during that time! I also had excellent team of doctors who tried their best to find ways to allow me to do these things as they also were all outdoors people. You might try counseling ...both you and your husband , to help you adjust to this life change as he might have some resentment as you do and you both can let it out...takes a good year to adjust to it all too. so do not push yourself too hard..give yourself time to grieve and accept what is now your life. But many others are in same boat and doing well so try to focus that is how you will be too!
So just try to do things that you both enjoy and kids love art projects that are easy to do when you are more tired plus there are some nature books you can do in your back yard if you have boys or girls. I also suggest reading few books about raising kids with chronic disease both by person who had it and by kids raised by parent with one....so you can avoid the pit falls. I read a number and it really helped me a lot plus kept me focused not to let them get away with more since i felt guilty for having to say sorry today is rest day. But i found many things that were fun for them and i could sit back and watch them as they enjoyed it....sports, horse back lessons or the park of course!
Hi I’m 34, married and have a 2 year old daughter. I was recently diagnosed last December. Accepting and dealing with it has been hard but I’m taking it day by day. I don’t really have any advice as I am still trying to figure things out myself. But I just wantes to let you know that I’m going through the exact same thing and know exactly how you feel. You aren’t alone. We’ll get through this somehow.
I just started Lyrica.Five days on a low dose and I already feel better after years of suffering.Ask your doctor for it.If he says no find another doc.
I go to a free clinic.No health ins.
Hey there, I am 10 years younger than you :P but like you I feel old.... all the time... and every day can be like hell. I cried when then told me I had fibro... not because I was scared or worried or anything but because it finally had a name, and there were other people like me out there and there was some hope.... I do not know if you feel the same way but people on here are brilliant. Hopefully they will help you have some good days, also a lot of the advice people can offer is stuff you can take to your doctors so that they can help you better. Make sure you stay in touch with us on here and let us help. My partner sounds like your husband. He works hard and gets no rewards and it must be hell for both him and your husband having to see someone they love going through this. *hugs*
Mikex
Ok so last night I was in the middle of a pity party for myself. All I can say is WOW. You guys are right...the support you give here is amazing. My mom was worried that doing this would depress me further but I told her "Oh no, they're great and they give much needed advice and pep talks!" Thank you all for responding. Its nice to vent and not get ignored.
People on here are brilliant at picking you up and making you feel better about yourself even when you are feeling really depressed. Remember to smile, it may sound simple but it helps... just a little smile every now and then will make you and those around you feel a lot better. I promise xx
Hi Mrs R , I’m so glad you posted, it’s so great to get to know people, and if someone responds that you would like to chat with or get to know better, send a friend request to them, you can do this by going to there page and hit add as friend. Regardless of age we can all relate, but I know there are so many members trying to balance fibro & young children… My heart goes out to you all, I do understand because I have a 5 year old grandson and sometimes I hate that I cant be the grandmother I always dreamed I would. I just have to focus on how blessed I am to be able to enjoy the time I can and even if I can’t take him a lot of places I can sit and color with him and he knows when I hug him and say I love you… That he surely has my love !
Learning to not feel guilty when you can’t do something is a tough one !! It was for me !! I am getting better at it, as you learn when you can and can’t push your self it gets easier because when you do push yourself beyond what you should… You feel worse.
It can seem like a nightmare…especially early on, I spend an entire year with my brain on this roller coaster of " how could I possibly feel so bad " & " what is wrong with me " " I feel like an 85 year old women " … Ugh
Savella had helped me off that roller coaster , as well as LWF … Friends !!! Knowing your not alone, your not crazy, your not faking it… All has helped sooo much !!
Take on day at a time… Love letters to normals by Claudia Merek is great ! & the spoon theory has helped so much also.
It won’t always be this hard, I think where you are is prob. The toughest ! You will be able to enjoy your daughters… It takes time to find what helps you the most… Meds, exercise , supplements, stress reduction, yoga, massage, diet modification… The list is ongoing. And always a process for all of us !
Stay strong, we are all fighting this nightmare together !!!
Give that hubby a hug, letting him know you appreciate him goes a long way !!
Hugs
& blessings
dee
Hey Newby. Welcome to the world of Long-Term, Chronic Pain. Here's a few things - hopefully some will make sense.
- You are in the right place. Getting to know others with FM is critical.
-
I suggest that you be a big believer of educating yourself as much as possible during this process. You obviously have access to a computer and there is a ton of stuff (both good and bad) out there for you to read. So, how do you know what is good knowledge and what to steer clear of? That's why a forum like this is so valuable. People like me, who are in their third decade with FM and have volunteered for decades, started/facilitated support groups, etc., can give you a push towards info that is a good start. I BEG YOU TO KEEP YOURSELF EDUCATED ABOUT FM. IT IS ONE OF THE KEY STEPS YOU CAN TAKE TO KEEP THE DISEASE IN CHECK. Others are:
- a good working relationship with your rheumatologist,
- keeping your weight in check,
- getting regular and solid sleep
- advocating for yourself
- a balance of Patience and Tenacity
- IMHO the most important thing you can do is MOVEMENT. Think of your body as a sponge. When you do not move, your body is like a dry sponge. Have you ever tried to bend a dry sponge? When you move and get the blood flowing, it is like you are wetting the sponge.
OK, back to education - The National Institute of Health (NIH, in Bethesda Md) has a specific department that deals with information related to fibro. It is called NIAMS (the National Institute of Arthritis, Musculoskeletal and Skin Diseases). They have a terrific packet of information that you can call and request (301-495-4484). If you want, here is the direct link to their web-site dealing with FM which you can view, print, etc., http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp
This will give you a good start education-wise (but won't overwhelm you) so you are armed with the appropriate knowledge going into your appointment. It should also help you generate appropriate questions for your rheumy.
The last thing I will say before I wish you luck on your FM journey is that there generally is no magic pill for our condition. It is definitely a journey and will likely take time for you to incorporate it into your life as a mother, your marriage, understanding of how far pain can go, etc., TIME is something most people don't appreciate when it comes to long-term chronic pain. You have to give FM recovery/placement in your lifetime. With the right doctor and an understanding of how people live with FM, you will be able to live a relatively normal life. It will just be a life with FM.
Good luck to you, friend. Please remember that we are here if you need to talk, understand, vent, etc.,
I highly recommend a book called "The First Year: Fibromyalgia: An Essential Guide for the Newly Diagnosed" by Claudia Craig Marek - you can find it used on Amazon. It is a great source of information and support and knowledge. It covers a wide variety of topics, including parenting, marriage, family relationships, finding a good doctor, medications, supplements, diet, etc. My favorite part is a letter than a patient wrote to her family to describe her experience with FM to help them understand. I swore she took it directly from my life (pg 119 & 120). Good luck to you in your new journey.
~Suzea
PS. I think we have all experienced people who think we are faking it, or it is all psychological. My stance is that anyone who is not willing to listen and believe me does not need to be around me. I need positivity in my life, not negativity or people who constantly question me, I do that to myself enough.