Today I saw a Rheumatologist for the second time and after doing extensive blood work and ruling out other disorders, confirmed that I have fibromyalgia. I had expected this and was somewhat hoping that he would have some answers for me when I went into the appointment. However, despite this, I still feel sad and am in a state of disbelief. I was healthy a few months ago and then my life seems to have changed dramatically after a bad fall. There is a fibro support group meeting on Saturday in a nearby town so I signed up for that but I would love to hear from other people how you dealt with the initial shock and got to a place of acceptance. Thank you.
Hi Rose!
I am very pleased to hear from you, extremely happy you consulted a Rheumatologist to rule out the other wicked diseases that this could have been as a diagnosis, in addition to the fibro. I am not taking the Fibro lightly by any means, rest assured! Hopefully the Rheum will either continue to treat you on a regular basis or see you yearly, I feel that along with a good GP, you have a very good chance of feeling better. Perhaps not always best, surely better.
It's trial and error with meds, treatments, movement. It's all a process, and right now you are in disbelief, it's all part of it, and we are all here for you. The more you learn about it, the more you do about it, the better you will be, on many levels.
I call Fibro the 'over-doers disease', in most cases we have all pushed ourselves beyond what our bodies could withstand, have been injured and pushed ourselves too much too quickly trying to keep up with the frantic speed of normal life... something along those lines. We all basically write the same story. Being kind to yourself, making your life as simplistic and easy are always helpful.
This is a wonderful group of people from all over the planet, who meet up to vent, to learn, to share, to comfort each other with understanding. Hopefully you can read through some discussions, blogs, click on our photo, and read our profile.
We're here anytime, for anything! Be kind to yourself, and pace yourself as much as you can. It's a learning process.
Great idea to meet up with locals, meet some understanding people, make some friends who understand! Hope it turns out very well.
Big hugs,
SK
HI ROSE IT TOOK FROM APRIL 21 2010-JAN 2012 TO FIND OUT THE DIAGNOSIS I WENT FROM MY PRIMARY TO INTERNIST TO RHEUMATILOGIST LOTS OF TESTS AND EVEN AFTER THE DIAGNOSIS A BONESCAN TO RULE OUT ARTHRITIS I HAD RADIOACTIVE DYE INJECTED IN MY ARM TOLD TO GO HOME DRINK LOTS OF WATER RETURNED AND LAID PERFECTLY STILL WHILE A MACHINE SLOWLY MOVED FROM FEET TO HEAD IT WAS ONLY 1 INCH ABOVE YOUR HEAD IF YOU JUST SLIGHTLY RAISED YOUR HEAD YOUD BUMP YOUR HEAD ON THE OVERHEAD SCANNER IVE TRIED SO MANY PERCRIPTION DRUGS THAT THE NP WANTS TO PERSCRIBE AQUA THERAPY AND SEE IF THE SAVELLA THAT I DONT THINKS HELP AFTER 2 MONTHS ACTUALLY HELPS IVE BEEN TSKING IT FOR 2 MONTHS I HAVE SOME IF I DO FEEL WORSE AFTER STOP TSKING IT I STOPPED TSKING THE SAVELLA 1 WEEK AGO M GLAD YOUVE JONED TH GROUPNALL THE INFORMATION ADVICE SUPPORT JOIN US ANYTIME
Rose when I got my diagnosis I did what I do best , i unfortunately ignored it and went home in pain to continue being super mom . I fought silently through it to be what was expected of me and do what was expected. I had a husband who wanted me to handle everything and him work and nothing else . I had two teenagers and a 10 year old and two other children ( teens friends of my oldest son ) living with us . My daughter had problems due to a head injury and seizures that were a daily thing . I was homeschooling all the kids and had been schooling mine for several years...Two years passed of me pushing , using a cane , but still going . My oldest now married and living at home with a new born , my first grandchild , who I was doing everything for .His mom wouldn't do anything so I was even up for night feedings . I made a fatal mistake that hurt me but woke my family up . I fell going over a baby gate, my hip locked up . There was no standing and my doctor put me in the hospital for the fall but also exhaustion. During that stay my family got chewed by the doctor and I had to face reality that I was not ok .
When we have to go from ok to not it's a blow . The easiest way to accept this is not to try and be what you were , realize you are not and realize it's ok that your not . make modifications to make things easier and dealing with it will be easier . The sooner you do that the better you will feel . When ever you are tempted to try and "be normal" realize you will suffer in the end . It's not the end of the world or life it's just a new journey .. Hugs and remember we are all here to walk it with you ....Suzanne
I was diagnosed 2 years ago and still feel like I am in shock. I have my good and bad days, but acceptance seems to be the best thing for coping with the day to day. Help your loved ones and do not be afraid to admit when you need help. People want to help, but cannot always tell when you need it.
Hi Rose, Im sorry to here you have been given the dx. Of fibro, it’s great that you are going to a support group meeting , it’s so very helpful when you know that others are experiencing a lot of what you are, when others validate your feelings it’s amazing how much easier it is to learn to live with this !! It’s not easy, but once the acceptance sets in, it seems easier… For about a whole year I fought it, struggling to stay in denial, let me just say , looking back, I could have saved myself a lot of hard days, weeks& months, suffering, had I been able to just accept it. But I think it’s a bit different for everyone , for me once I hit acceptance I felt better and the struggle became not so hard. What can help is to …
Stay connected with us , go to the support group meeting, educated yourself on as much as you can about how to live the best life possible with fibro, supplements, diets, exercise, meds, PT, dr’s… It’s all a lot to take in, keeping a journal can be helpful , and most important… Be good to your self !!!
Hugs &
Blessings
dee B
Dear Rose
I too am newly diagnosed with Fibro. 5 months ago i was a super healthy athletic happy person. Now i am lucky to get out of bed at a reasonable hour in the morning and if i can make 3 meals a day and somehow clean up the house ive done really well! Im glad you found this site! It has been a godsend for me. so many nice people and information!! I started out thinking i could just will the fibro away but i have been reduced to learning how to deal with it! No easy task! But all the people on here have something good to tell you and they have all been through what we beginners are going through. dont give up! stay positive. and hug on anyone you can!!!! We are here for you!!!!
TAKE IT ONE DAY AT A TIME IVE LEARNED TO DO SOMEYHING CALLED PRE-EMPTIVE RESTING RESTING SO YOU DONT GET TIRED CRASH AND BURN YOU HAVE TO LIE DOWN BECAUSE YOURE DO TIRED AND PACING DO 1 PROJECT REST BEFORE YOU GO TO ANOTHER ACTIVITY YOU CAN DO WHAT YOU WANT AND YOURE NOT TOO TIRED MY FORMER RHEUMI AND CURRENT NP HAVE TRIED SO MANY DRUGS THAT SHES GIVEN UP AND PERSCRIBED GENTLE STRETCHING EXERCISES AND AQUA THERAPY IM ALSO CONSIDERING ACCUPUNCTURE AND CHIROPRACTOR THE SAME LADY ANY MORE SUGGESTIONS THE GROUP HAS A LOT OF THEM YOULL HAVE TO TRY A LOT MIST OF US TRY OF COMBINATION OF THINGS THAT WORK DRUGS SUPPLEMENTS ALTERNATIVE TREATMENTS IM STILL TRYING TO ADJUST DUATNOSED JAN 2012 MY PRAYERS ARE WITH THE GROUP IM GLAD TO BE A PART OF IT WE HAVE EACH OTHER 2E KNOW WHAT ITS LIKE NOT NECESSARY TO XPLAIN HIW WE FEEL OR WHAT WE CAN/CANT DO AND WHY NOT IM GLAD BEN STARTED THESE GROUPS HES IN MEDICSL SCHOOL BECOMING A DR>
Thank you everyone for the support and advice. I think figuring out what my new “normal” is going to be will be key in my adjustment. Yes SK, I am definitely an over-doer and have always been so making the necessary lifestyle changes will not be easy. It is great to have a group of others who have gone through the same thing to lean on and to be able to learn from your experience. I also feel fortunate that my husband and parents have expressed interest in learning more about fibromyalgia and my husband has been very understanding when I am not able to do some of the things I did in the past. I am trying to think positively and and am hoping for the best. Thanks again! Wishing you all a good night.
Hi Rose and welcome.
I'm sorry that you got the diagnosis but in a way it can also be a relief to know that there IS a reason for all of these issues.
Sometimes an accident like yours brings fibro on, sometimes surgery, sometimes a lot of pressure on the job, and sometimes it's out of the blue. But it is life-changing, as you can see. And it can be hard to accept it once you really know. What I did was think that I had something similar but more "real" for quite a while, as I thought of fibro as a junk diagnosis. And then I pretended that only my back was affected because the other pain was tolerable. It wasn't until a year after the dx, when I had a car accident and could barely walk after it, that it really hit me HARD that I fibro. On the one hand it's easy to accept it on the surface but on the other hand, every time a big, new change occurs, it's hard to believe what it's done to you.
So that is why it's so important to come here so you can ground yourself and know that it's ok and you're ok. Other people have struggled with it and lived a decent life. They share their stories and bring you hope. Plus they share good tips. Their struggles and stories are inspirational. In short, this place truly is a God-send.
Meeting up with others with fibro is a great idea! You'll have the added bonus of seeing people in person and discussing how to deal with local issues as well, things like "which supermarket is the most mobility-scooter accessible?"
As SK advises, please be gentle with yourself and pace yourself. It's not realistic to expect yourself to do what you could before fibro. Fibro really is a medical illness and it's one we have to learn how to manage, so we can cope.
I wish you the best in coming to terms with your illness and learning how to manage it. It's quite a job but most of us on here find ways to deal with it (hugging our 4-legged furry friends helps a lot.)
Gentle hugs and understanding,
Petunia