Posted 3/7/2023 1:08 PM (GMT -8)
Hi, Kitten, and welcome! Well…where do I begin? I will be talking a lot about how I’ve handled fibro because I may be able to help you get your life back.
I’ve had fibromyalgia for 38 years. Back then no one had heard about this illness and most doctors didn’t believe it existed! So, if your doctor doesn’t know how you feel, how are you going to get others to know how you feel. When we have a myriad of tests and blood work done, we come out the picture of health! So how can we explain what is going on with us? We can’t! And the more we try, the more we are driving people away from us! Stop and think. If you didn’t have fibro, you wouldn’t understand it either. We look just fine and no one can see pain. The doctors try to find what could be causing the pain and all tests say we are fine. Some doctors will tag people like us with the fibromyalgia label because they have no idea what is causing our pain and we have had several members whose doctor’s have sent the to psychiatrists because they implied it was all in their heads! They went to the psychiatrists thinking they were mentally ill! Now how horrible is that?
We are not making up this illness. It is a true illness and thank God more and more doctors are believing this illness exists and those are the doctors you want to see. You have a doctor right now who stopped prescribing a medication that was helping you to the point that you could work! Did they give you a reason? You want to see board certified doctors and if they are Diplomates that is even better. They have to take tests every few years on all the new things in medicine I believe. So, if your doctor isn’t helping you, it’s time to move on.
I find the best person to help me out is…Me! I know how I am feeling and what things I have difficulty doing. So I do check things out on line at good sites like the a Mayo Clinic, the National Institutes of Health, John’s Hopkins, and so on. I know their information is accurate. I also check out vitamins and nutrients that will help with symptoms I have. But what works for one with fibro might not help another person. It’s a trial and error situation. For me, I use ibuprofen with food, vitamin D3, magnesium malate, and a muscle relaxer that has helped me immensely called Robaxin (methocarbamol). I take other supplements to help with other illnesses I have, too. I also learn how to work around my illnesses to do the things I want to do in life. Fibromyalgia will not rule my life.
Now, if you sit and lay too much your pain will be worse. You need to keep moving. At one point I had extreme pain that ran down both legs and I needed two canes to walk. But I cooked nice dinners for my daughter. Sure I was in pain but I kept on keeping on and we both had lovely dinners together. I push myself to do things. 25 years ago my husband died suddenly and we were in the process of moving to Florida. Our home up north was sold and we put a deposit down on another home. The only person I knew was my mother and she had a brain stem stroke 17 days after my husband died! So, when I moved to Florida, I was a recent widow, my mother was in intensive care and I didn’t know how to get around in Florida! I needed to meet people but didn’t know how. I. Severely hearing impaired so joining clubs or being active in church didn’t work for me because I couldn’t understand what people were saying in large groups. Too much background noise. So I resorted to a widow and widowers group at the funeral home. Sounds like fun, huh? 😳. I didn’t like going because all they did was talk about death and dying but it was the only time I could be with people. They met once a month and the meeting came up but I wasn’t going to go. I hated going. But I forced myself to go because I didn’t want to become a recluse. And you know what? Forcing myself to go to that meeting was the best thing I could have done! They had a guest speaker who was a travel agent that did group day trips and traveled with the people! I signed up for several trips and she helped me with my hearing and I not only went on day trips but also long trips and saw parts of the world I thought I’d never be able to see. But if I had given in to fibro and my other circumstances and stayed home, my life would have been completely different.
Here are my suggestions for you. I would head to a board certified ophthalmologist and thoroughly get my vision checked out. If there is nothing wrong, then anxiety could be causing the vision “problems”. At one point in my life I thought I couldn’t see well out of one of my eyes. After being thoroughly checked out, there wasn’t a problem with my eyes. So I just kept moving forward and continued to drive. If you are uncomfortable driving long distances, get doctors closer to your home.
See a board certified rheumatologist. Through their help and diagnosis I discovered not all of my pain was caused by fibro! I also have an illness called ankylosing spondylitis that causes a lot of pain. There are things that can help with the pain and the muscle relaxer was one of them.
If showers hurt you, try taking a warm bubble bath with maybe some Epsom salts in it to help your muscles. Do take care of your hair and you can even do your own manicures and pedicures. I do that myself. You will feel better about yourself and the movement should help lessen you pain. Your hubby will be happy too. 😉
I have a large home. I take care of it by myself. But I pace myself when doing any physical work. So I will dust one day, vacuum another day, etc. Everything does get done but not on the same day.
Call up your friends and make a luncheon date or possibly invite them to your home for lunch. Do not talk about illness and aches and pains. Instead see what your friends have been up to and just enjoy their company. I’m quite sure your friends will be back if you stop talking about how you feel. That’s depressing so people avoid that sort of thing. You have already found that out.
I do hope some of this helps you. Having fibro can be tough but you can still have a full and enjoyable life I. Spite of it. Just pace yourself, keep moving, and put a smile on your face. You can feel a lot better this way. Also, check out Fibro 101…the first thread on the forum. You can get good help there too. Please let us know how you are doing because we do care about you.