I am both a person with fibro and a healthcare professional. At this time I am still able to work. Like you I have good days and bad and probably like you I get frustrated because some physicians look at you like you are crazy when you say fibro. They think it is in you head. I have 4 children , many grandchildren . I love to quilt, read, and talk on the net. I am a strong Christian and Praise God every day for my life and those of my friends .
Hi my nickname is fibrofog,because i live with it everyday.I have Fibromyalgia,I would love to talk with others thathave this condition and maybe learn more about it.
I am interested in Fibromyalia because I live wiht this everyday, would like to learn coping skills, connect with people who suffer this condition.
I have Fibro along with other autoimmune diseases. I no longer take pain meds as I feel I was becoming addicted to them and they just added to the fibro fog I already have.
I’m learning to live with chronic illnesses and enjoy life to the fullest. I still have to learn my limits - not too much and not too little.
Looking forward to getting to know more people here.
Connie
Good Morning ~ I wanted to send you all a huge hug ~ Fibromyalgia is definately real ~ I know years ago the drs didnt help individuals with this disease ~ they thought it was non existent and part of the psycological breakdown of people that complained about the symptoms. It is indeed very real ~
From what I have experienced ~ the dr gives you a once over and looks for trigger points ~
I got hurt in the late 80’s ~ slipped on a puddle of water and wrenched my body so I would not hit the floor ~ I should have just hit the floor and the case of glass ketchup bottles I guess ~ I was out for 3 years ~ attending a pain clinic ~ not much fun~ the pain clinic wanted to just inject and mask ~ being of child bearing age I would not agree ~ I was in hopes of having a child and was afraid of what the outcome could be ~ I did however have lidocaine drip ~ which was suppose to shut some of the pain gates ~ I had myofascial problems ~ the soft tissue ~ I slept on the floor with the dog ~ for a long long time ~ Worker’s comp and the insurance company process is totally ridiculous ~ For someone that was injured they make you feel like your lying ~ and for all the people out there that have a legitimate problem ~ god bless you ~ In dealing with this, the pain clinic told me not to get pregnant ~ that I may never be able to have a child; dealing with the insurance co and the worker’s comp judge, lawyers ~ its a process that will really make you full of stress, uncontrollable pain, and your are treated like a felon.
The poor individual going through this process! In my heart, I was not the same person I was… I cant do this, I cant do that ~ for the individual going through it ~ you really are NOT the same person ~ It was a vicious cycle. Crying cause your living in pain, depressed, emotional, fighting for yourself, and wow… its devestating.
Inside, I was living with the pain, trying to be heard, angry with everyone, dealing with people who wanted to just mask the pain in order to get me back to work and off comp, wanting a child desperately, and angry that pain management said I should not get pregnant. Who’s going to pay for that ? A life childless ! I cant tell you about the pain~ my muscles were surely never to be the same ~ I survived the ordeal, having changed attorney’s several times ~
I didnt need a lawyers office telling me what I needed to say when I saw a dr ~ This angered me ~ I felt like what kind of a process is this ~ A nurse walking me step by step be sure to say this say that ~ I fired the attorney. I DIDNT NEED ANYONE telling me what to say ! I was in pain ~ I didnt need to be coached ~ One day in the office, the lawyer said, see that man there, he’s getting $20,000.00 ~ and theres nothing wrong with him ~ I looked at the attorney and said thats it ~ I want my file and your fired. I dont know what she was trying to say ~ but I didnt like it ~ I left there feeling, I was all alone in the process. And I wasnt going to take it ~
When I went to the office to get the file, I stood in front of the receptionist, I simply was assertive and said I am here to get my file. She told me that I couldnt get it today, that they would send it in the mail ~ I said no ~ I am here to get the file ~ she said, if I was to persist, she would simply pick up the phone and call the police and have me escorted from the building. I was RIPPED. This told me that I had made a very good choice in leaving the practice, that this was not the first time she had uttered those words. So I said fine, and left the building… I went home and found a new attorney. When people are going through this process, never having had an attorney, its a game of pick up sticks. You dont know what your getting ~
I knew I was a different person, still unable to do many many things ~ I wasnt the me that I knew. Life was changed
Anyway, it was a short time thereafter that I walked away from it all ~ I can only tell you I am lucky to have my marbles. I began walking, exercising, and slowly began to put my life together again ~ It was a long journey of 3 very long and desperate years.
7 years later, I had my baby ! She was truely a gift from god. She was born in 1994. She was my life, my entire life… an angel from above.
When she was 2 1/2, I divorced her daddy, walking away with my own personal belongings. I left my house so she would have a place to be that was home… not wanting to take anything away from her. I am a surviour. I would get through this. And, I personally knew I could take care of myself. I bought a house, and then the rug slipped out from under me.
I was feeling like I had the flu. Achey, my feet hurt, thought I also had tendonitis.
I went to the dr ~ the dr ordered blood tests. I was terribly tired. I wasnt sleeping well. The pain was 10+. I was tested for RA, false positive, retested. I was tested for Hepatitis ~ didnt have it. They also tested me for lyme. I was false positive ~ underwent a more sensitive test, no lyme. I also had many trigger points of fibromyalgia. I began my search for a rhumetologist. The one I went to was self-appointed. He didnt like the fact that I had done a lot of homework on the internet ~ and looked at my list of questions, and laughted, placed them upside down on the counter and said I didnt need these. I was appalled. He gave me some prescriptions and said he would see me in a month ~ I walked out of there knowing that I was not returning ~ nor filling the scripts.
I did some research and found a specialist 2 hours away ~ I went for an evaluation~ I had both ~ RA and fibro ~ and felt confident now that I was truely evaluated and now knew what I was dealing with. I continued to research both diseases.
I went to a rhumatologist for about a year ~ 1 hour away ~ and then discovered one, through my primary care dr who is 15 minutes away ~ Hes been a true gem. I go for monthly blood work ~ It wasnt until a few months after being in his care that I began methotrexate, plaquenil, mobic, and asulfasalazine. He said that they have found that this combination usually is successful. So, I was on them all~ I was totally devestated after one of my check ups as I saw on my chart “Oral Chemotherapy”. I was shocked, bewildered, scared. For a person not used to taking aspirin for a headache it was alot to swallow. I also started taking the folic acid to keep my stomach from getting upset. I have been on this regime for about 2 years now. My xrays are clear ~ no destruction~ I have nodules on both boney parts of the ankle. I continue to research and be as uptodate as possible, not afraid to ask questions.
The best thing you can do for yourself, is be your own advocate! Stand up for yourself and ask ask ask. Ask as many questions as you can about your health, medications. Be very cautious using herbal supplements. Tell your doctor about them…what your taking ~ Trust your rhumatologist ~ If he dosnt answer your questions, your entitled to go somewhere else. YOU make the decisions. Its your body.
If I can help any of you Im here ! The days that I suffer today are when the weather is changing, rain, snow sleet. I have a hot tub I use every other day that is definately a great thing to have. Very fortunate. I also use a hydroculator when I need it. Deep moist heat better than heating pad.
Just know that your all not walking alone, there are hundreds and hundreds of people that are also living with RA and fibromyalgia. And the numbers keep going up ~
Dont give up ~ Make your doctor listen ~ and stand up for yourselves. The pain is very real ~
God bless you all ~ ((((((((((((((((huge hugs)))))))))))))
wE’RE in this together !!! People in numbers move mountains !!! Join this group!
Hi! I have Kartageners with situs inversus,Depression,Fibromyalgia,Chronic Sinusitis
Hi Everyone…
My name is Toni, I will be 49 in March of 08, I live in Northern Minnesota…I have three grown children, and six grandbabies. I feel forturnate that this, Fibro stuff waited until my children had grown up…I feel so much for those of you who are younger, with families to raise. My heart goes out to you. I can’t imagine how hard it must be for you. I know how hard it is for me… Bless each and everyone of you…
I am here just looking for support and friendship…also to give understanding, as well as receive it… I love this site. So much information and kind hearts.
gentle loving (((((hugssssss)))))
I have been dealing with fibromyalgia and as I get older it seems to be getting worse, I would like to connect with other people who deal with this young or old it dosent matter,and maybe learn new techniques of how to cope and deal with fibromyalgia. I also have psoriasis very bad all over my body, I can’t even enjoy wearing shorts in summer cause I’m so ashamed of having psoriasis and people stare at my body so in summer I wear long sleeve shirts and pants. With having both fibromyalgia and psoriasis and other health issues I stay very sad and depressed all time, and don’t care whether I live or die, I normally stay in house with blinds and curtains shut all day long, only time I go out is if I have to,and then I can’t wait to get back home so I can hide. Yes I do have a husband but he never talks to me if he does its about work or something like that. When he finally takes time to talk to me about what I’m going through and how I feel, he just sits there and listens he never gives feed back or advice, he just says I’m sorry u have to go through so many health issues but I still love u. I tell him all time he takes me for granted,always taking care him, of course he says he’s not but how come I feel that way, yes its because he makes me feel that way. I just need alot of comfort and support from people out here who are dealing with any kind of medical issue and would like to make a friend. I hope I hear from someone soon cause I’m at my lowest weakest point don’t know how much more I can take.
Hello to all…I have been diagnosed with fibromyalgia for about 2 years now although I had symptoms for years prior to being diagnosed. I look forward to learning more about this illness and how others deal with their symptoms.
My sister was just recently diagnosed with fibromyalgia, I thought i would join on her behalf as i too are under investigation for Dercums Disease. We both have the same symptoms, even down to painful lumps (lipoma).
As she is recently diagnosed we are all coming to terms with understanding it. I hope to get as much information as i can to help her from this forum.
thanks for allowing me to join.
michelle
Hi. I’m Cherie. I’m 59 and have lived in N CA for 36 yrs, and I was born & raised in MN. I’ve had fibromyalgia for at least 10 years. I had scleroderma (CREST) and CFIDS first so the fibro symptoms were hard to distinguish. But OMG!! I am SO glad I checked in. I have been baffled by the painful lumps in my torso and years ago I searched the internet to find if there was any cnxn betw fibro and lipomas. Even last month my rheum MD dismissed them saying “everyone gets lumps as they get older.” Now I see someone else has mentioned them. The ones that really affect my quality of life are the ones near my ribs. The pain is so bad it wakes me every 2 hrs or so and I can’t even sleep on my Left side anymore. I’ll be checking in a lot more often, now. Thanks to all of you for being there.
Hi! I have been recently diagnosed with Fibromyalgia and am wanting to learn and have help in coping with this disease. Thank you.