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Fibromyalgia
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Posted 9/4/2019 6:20 PM (GMT 0)
I have not yet been diagnosed with Fibromyalgia. I will see a rheumatologist at the end of the month. I have read all of the symptoms and have so many that I am fairly certain this is what I have. My biggest problem is fatigue and muscle weakness. I can work for a short period of time then feel like I need a nap. My muscles are so tired I don't want to move. I feel like I'm losing my mind. I have also found I have extreme difficulty with word finding. Something as simple as a bracelet and I can find the word for. I have had these symptoms for years now and thought I was crazy. Now I realize where all of these symptoms may be coming from. By the end of the night I generally feel like I have the flu and just want to go to bed. Please help.
Posted 9/5/2019 12:44 PM (GMT 0)
Hi, Marie, and welcome! Fatigue is one of the symptoms of fibro and some have it worse than others. I will go in phases...I’ll have fatigue for many days or even weeks and then it will be better for awhile and then I go back to the fatigue. I do find that if I set a goal and focus on the goal, I not only can complete it but don’t notice the fatigue as much. If I give in to the fatigue, nothing gets accomplished. With fibro, if you sit or lay too long, you will be stiff as a board and have more pain and this goes for fatigue in my case too.

Getting a good night’s sleep is important but tricky. We don’t get down in the REM sleep so we wake up almost as tired as when we went to bed. You need to be on a sleep schedule. That does help. I go to bed and get up at about the same time every day. My body is now accustomed to those times so I fall right asleep and I don’t even need to set an alarm now gbecause my body wakes up a few minutes before my alarm is set! I don’t drink or eat food with caffeine in them after early afternoon. If I do, I have problems getting to sleep.

You didn’t mention pain. Pain in all four quadrants of the body is one of the hallmarks of fibro. If you don’t have pain you could possibly have chronic fatigue syndrome. I’m glad you are seeing a doctor because hopefully your doctor will rule out other illnesses that have many of the same symptoms as fibro...things like Lyme disease and lupus. There really isn’t a good test for fibro so these things need to be ruled out before a diagnosis of fibro is given.

We call our memory lapses fibro fog. Words are on the tip of our tongue but we can’t pull them up at that moment. We will remember a few seconds, or hours, or days later. I find that when I’m really tired I have more problems remembering. I will even forget what I was saying in the middle of a sentence! I used to get angry and frustrated but that just made things worse. So now I just laugh it off and move on and try not to get so tired.

Pacing yourself when doing things helps too...with both the pain and fatigue.

Be sure to read Fibro 101...the first thread on the forum. There is a lot of good info found there.

I’m looking forward to getting to know you better. Don’t hesitate to ask questions because we are here to help you. Do let us know how your doctor appointment goes because we do care about you. Hope to hear more from you soon.

Sherrine
Posted 9/5/2019 10:08 PM (GMT 0)
Thank you so much for the reply. I feel less alone. I didn’t mention pain bc I’m so used to it. It’s the fatigue and muscle weakness I can’t get over. I have pain in my hips and shoulders while I sleep. Back pain always. Knees, wrists, neck pain. I honestly can deal with the pain. Frequent headaches. My anxiety has become worse. Feeling like I have the flu every night is awful. I find as I get more tired I start to feel fluish. I have a masters degree and can’t talk without someone helping me find simple words. It’s all just so hard to take. I have to stop focusing on the problems bc it’s making it worse. When I thought I was crazy I would just keep plugging along. Now I want to give in to the fatigue. Thanks again for the post.
Posted 9/6/2019 9:28 PM (GMT 0)
Feeling like you have a case of the flu is common with fibro too. I’m glad your pain isn’t really bad. I had very bad pain but now take ibuprofen and a muscle relaxer called Robaxin (methocarbamol) that has made a significant difference in my pain. Other things that help with pain are vitamin D3 and magnesium malate.

It’s best to keep a positive outlook when it comes to this illness. I suffered from bad anxiety for quite a few years. This illness is difficult because you don’t understand how or why you got this or if you’ll ever get your life back! That anxiety causes much stress and can become debilitating. But once I realized that anxiety is fear, I was able to kick it to the curb. My minister taught on the scripture in my signature and that has helped me a lot. I was a teacher and, when you can’t finish a sentence, you start to think you are getting dementia or Alzheimer’s! It’s frightening but now I know that isn’t happening to me. That was a relief and I could start to relax and not be so stressed out! Well, that in turn helped with my memory issues. Stress and anxiety go hand in hand and can really do a number on your life.

Also, even though you are handling your pain, it’s always there under the surface and that is bothersome also. So all these things can lead up to depression...sometimes bad depression. This is why I suggest you take one day at a time and keep a positive outlook. What you are going through happens to many with fibro. In Fibro 101 there is a good link to how to maintain a positive attitude when you have chronic pain. This really helps a lot.

I hope you will be seeing a good board certified rheumatologist and will get many of your questions answered. Start making a list right now and take that with you when you see the doctor. You will forget things you wanted to ask if you don’t take a list. Make sure they answer all your questions. Some doctors just don’t want to spend the time with you but you are spending a lot of money to see them! My doctors do answer any questions I have. Having some answers to things helps with the stress and anxiety too. Our brains can conjure up all sorts of bad scenarios. 😊

Do let us know how your appointment goes. I hope you really like your doctor. 👍

Sherrine
Posted 9/7/2019 2:22 AM (GMT 0)
Hi Marie and welcome to the fibro forum! smile

I have very little to add to what Sherrine said (she always covers everything so well!). However, I thought I'd mention a book I just came across and recently ordered. It must be popular because it's on backorder until the end of the month! It's called "Coping With Chronic Illness" by H. Norman Wright and Lynn Ellis.

It was interesting to me that it even mentioned fibromyalgia in the list of conditions listed on the front cover.

I hope your appointment goes well for you. I tend to make lengthy notes that I take along to my doctor appointments. I think it's good to tell them any concerns you may have.

Best wishes and please keep us posted. Hope you have a great weekend!
Posted 9/21/2019 2:56 AM (GMT 0)
Hi marie,

Has your vitamin d level been checked...i had fibro for decades and thought i managed with it, until my d levels dropped ,one really bad winter...then i just felt so weak and feeble and my mental state was bad..

Once i got that d level back up , i surely improved. Fibro is tough but we often have other issues and need to adress them, not just assume its the Fibro. Do you take supplements?

Some are really helpful, like magnesium and malic acid...

Just remember , however you are feeling today...you can feel better..with so many of us..there is trial and error, but its so important to know , you can get better😊
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