I told him about the confusion. Forgetting things and getting confused during the day.
(good news? I see it. It is really bad when the confusion hits and don't realize what is happening)
I told him about the pain that fills my day. Feet, hips, hands, elbows, shoulders and the headaches.
(good news? my knees and back don't hurt, I am not falling yet and I am still mobile)
I told him about the fatigue that sends me back to bed to rest after the smallest task.
What did he say?
"I know. It isn't as bad as you think. It has been worse than this before and it is getting better. You are more tired because you are fighting it. You are moving more and trying to do more things. You are frustrated because you run out of energy before you finish what you wanted to get done. It is okay. I am watching. I see more than you know."
Yes he does. Just when I am feeling guilty for the time I spend resting, he posted this on face book.
We don't know what is wrong. Doctors won't listen but we both know this isn't normal. The problem is that I am not very good at telling a doctor what is wrong. My memory slips. How do you tell a doctor about memory loss? That is hard to do when you don't know what is gone. How do I tell a doctor that something is wrong when to me, it is normal? That is what keeps us from getting a Dx. Time will tell. Dragon wants me to go to a big hospital several hours away and see doctors there. He thinks they will figure this thing out. This time I will let him decide when it is time to go. He is in charge. He knows more than I think he does.
One day at a time. I will keep moving, keep pushing and hopefully this too will pass. I am thinking about trying to wrap my feet during the day to see if it will help. For my hands, I just have to be careful and not use them too much. No opening bottles or picking up heavy things. I know the rules.
Dragon's rule? "Don't try to do too much and Missy? Don't feel guilty about resting when you need to. I can't fix this but I can make sure you get the rest you need."
Love my man!
This is so sweet, Rose. They do see more because they know us and they are diligent.
ReplyDeleteHave you thought about seeing an Osteopath or a Naturopath? They just seem more open and invested in the patient's health, ask the right questions, and be committed to get you through to a diagnosis.
We'll keep you in our thoughts and prayers that you find some relief soon. In the meantime, you are in the best hands of all.
(((hugs)))
Thank you. I have seen an osteopath and got the same runaround. Our current insurance doesn't give me many options. In a few months I will go to a different plan (tri care standard). It will cost more to go to the doctor but will have more flexibility. I keep hoping for answers.
DeleteRose,
ReplyDeleteI would definitely think about going to a bigger medical facility, but be prepared. Prepare things you have noticed so even if you don't remember when you are there, you have it written down.
It was very sweet of him to post that, glad you have him to be there for you, to lean on.
Hugs, Julia
I was going to appointments alone. Dragon would say home with the kids. Now that they are older, he will be able to go with me. He will be able to explain what is going on better than I can.
DeleteI don't know what I would do without him. Love that man. Thanks
Chronic illness really plays havoc on so many parts of your life. You are so lucky to have Dragon who doesn't doubt you. We dealt with years of chronic illness with my daughter, and to a lesser extent my son. Do not stop searching for the answers. Going the natural route can help a great deal...we have done that too. However sometimes you may need a combination of the traditional and natural treatments. I like the idea of going to the larger hospital for more extensive tests. AND NEVER EVER question yourself when it comes to demanding the answers you deserve. Do not allow a doctor to make you question what is happening to your body. Every time you realize or feel a symptom or change- right it down. Ask Dragon to do the same. That way you will not worry about not giving the full picture.
ReplyDeleteHave you considered things like Lymes Disease? I know several people who have it and it is an insidious illness that manifests so many ways. It is hard to diagnose and you must get the more pervasive test.
Hope things get better, and answers come quickly.
It gets discouraging after a while. When so many say that it is all in my head, it is easy to believe and to hide the pain. It takes a lot to get me back to a doctor. This time, I have left it up to Dragon. When he says go, I go.
DeleteOne step at a time. Thanks
Dragon knows best. Listen. There has to be an answer and you are your own best advocate - don't let them tell you there isn't anything wrong, obviously there is.
ReplyDeleteWith a research hospital down the road, I hope answers will be found. Bigger city and more choices for a second opinion.
DeleteFrom you symptoms, it almost sounds like Chronic Fatigue Syndrome. You might want to do some research online and see if you can find a doctor familiar with it.
ReplyDeleteDefinitely keep pushing until you get an answer. Steve was sick for several years with a stomach condition that none of the local doctors could figure out. It wasn't until I started looking online and found a doctor familiar with the condition I suspected before we got our answer. Now that we have a diagnosis, we know what to do to prevent episodes and how to treat them when they do occur.
My allergy doc talked me into seeing a neurologist. That was a mistake. He thinks that I have something autoimmune going on. So did my DO but she didn't want to take the time to help. Maybe here we will find answers.
DeleteHave you seen a rheumatologist yet? I know autoimmune sounds scary but the symptoms you're describing are very typical of fibromyalgia which in turn isometimes goes along with more serious autoimmune issues. Chronic fatigue syndrome should be on the table, though with your pain I doubt that's all it is.
ReplyDeleteI've got it, so these are words of experience. You're describing exactly what I felt at the beginning. Google "fibro fog" as well as fibromyalgia. The biggest thing with this is knowing precisely what's wrong. It's almost always just fibro.
After many many years of thinking it was just fibro plus a bunch if unrelated symptoms, I was finally diagnosed with an extremely life threatening rare autoimmune disease. When that went into remission the fibro largely disappeared. It comes back mildly if I don't sleep well for a few days then gone again in a few weeks. I'm not trying to scare you but personal experience has me concerned. Most doctors aren't familiar enough with fibro to think of it as a possible diagnosis.
The other thing that comes to mind is a tick-borne illness such as Lyme disease. I also had that and wasn't aware if a tick bite or rash.
That was going to be the next step after the neuro but my DO brushed me off after that. I was feeling better so I quit trying.
DeleteTrust me. You can't scare me any more than I already am. 7 years and counting. I will be making a list before I go back to any doctor.
And keep being an advocate for yourself. I'd be long since dead had I not persevered. Best of luck!
DeleteThis round is just beginning. Dragon loves me to much to let me quit. Thanks
DeleteI know it's hard to talk to your Dr. we have a tendency to go blank when they ask us what's going on. I'm going to suggest you keep a journal. Write down what you're experiencing, when it happens what you were doing, how long the symptoms lasted, keep track of your sleep and what you're eating and what helps ease symptoms if anything. In other words keep track of everything, it will help you explain what's going on to your Dr. and give him a clearer picture. And take Dragon with you, he will be able to add info, be your advocate and offer support.
ReplyDeleteMaybe a calendar with big squares would work.
DeleteI have tried a journal but that didn't work out. Memory issues. I lost it after two days.
I really do need to write down how long this lasts. One thing I can count on is forgetting.
Hey Rose...so happy you have your Dragon standing up for you. Follow where he leads and let him be your advocate. I nearly lost my life with doctors insisting that there was nothing wrong with me...it was stress or all in my head. Finally a 'resident' suggested a complete physical and discovered the issue. If she hadn't, I probably wouldn't be here.
ReplyDeleteI would suggest keeping a calendar hanging on the wall...one of those planning kind (big squares)...you can put quick notes on there without having to track down a journal.
BTW...there is no specific test for fibromyalgia...it's more exclusionary...test for everything else.
Hang in there...sending lots of prayers and healing energy your way.
Blessings,
Cat
No more going by myself anymore. That is for sure? Just for giggles, I looked up fibromyalgia. My symptoms didn't fit the old standard but the new standard? Yes.
DeleteI don't know what to do. One step at a time and stay active. That is the plan
thanks