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!