I just wanted to say hello. I can definitely understand how hard it can be while suffering from fatigue and trying to raise a family. It can be so frustrating. You are not alone... all we can do is keep fighting for a positive change.
I saw in your journal that you mentioned you get really cold... have you had a *full* thyroid panel done recently? You need to look at thyroid antibodies, along with several other things. You can look it up online and speak to your doctor about it. I think that is very important to have when experiencing these kind of symptoms. Secondly, I would ask your doctor for a Vitamin D, Vitamin B-12, and Ferritin test. If any (or all) of those things are low, they can cause problems.
You can speak to your doctor about any other tests he/she feels need to be done to rule out any underlying problems. My doctor was actually pretty helpful, but some simply do not know what to look for with CFS patients. I think it's really important to find someone who knows how to help you.
Lastly, I don't know if your doctor would be amenable, but have you had any heavy metal testing? I did a test a few years ago and I had several levels that were high, including mercury (maybe from my dental fillings). I'm not sure if this causes part of my problem, but it's a current avenue that I am exploring.
I just wanted to say that you are not alone and I hope you start to feel a little better soon.
Oh... I forgot to ask.. you are taking birth control or any hormones? These caused terrible problems for me!

Welcome to the group. I'm sorry being ill is what brought you here, but I know how much support you will get from DS. It has helped me so much, especially being able to share with people who truly understand!

Thank you, Bluebonnet and morebooks. It's just a relief to have a place to go when I need talk about.

Bluebonnet--yes, they've done the full thyroid panel and it did come back normal. After the first test came back normal, she went back and did a full panel to see if anything was hiding. I am currently on Vitamin D supplements because that has been low since last spring. The follow-up in September showed that the supplement is doing its job. I've tried B-12 before with very little effect, unfortunately. Thanks for all your suggestions--I appreciate them!

I doubt the heavy metal issues, but will ask her about it. I have no metal dental fillings, but who knows where some of this stuff can come from? I'll ask her Friday. Oh, and no on the hormones. AKA not on your life. I despise hormonal birth control. It totally screwed me up at one point, so haven't touched it in 13 years. I did have a hysterectomy in '12, but the ovaries are still here.

Thanks again for your support. I really appreciate it!

I'm in a similar boat to you. Things have really slid downhill this winter for me. I'm having my doctor investigate my thyroid further, the first tests came back all okay, but that doesn't always mean you're fine. I'm also cold constantly and have a heating blanket beside my chair and one in my bed. If you haven't had an antibody test you probably should to rule out Hashimoto's.

I guess I'm still hopeful they'll find out what's wrong with me and fix it. I've gone from fatigue that seemed like narcolepsy - i.e. taking a lot of naps to now not being able to get out of bed somedays, well a lot more days then I like to admit. It's freaking me out at the moment and really scary. My family doesn't deal with it too well. Kids wonder why they're doing all the dishes and husband wants to know why I don't go to the Post Office for him and run errands. They really haven't a clue in the world as to the kind of shit this illness is. They don't know what fatigue means. I don't think I ever did before now. I think I get too exhausted to dream sometimes, in my dream world I just want to sit and lay my head down.

You're not alone and I hope you'll hang out here a lot and post! :D

Welcome...this is a very supportive group and a great place to be...given the reasons we're all here. Nice to meet you

Welcome jcpmoore! I'm so sorry you have this awful illness, but I'm so glad you found your way here. This is THE BEST place I have found for support with all the issues of SEID.

I can't believe your husband says "it's not that bad"!! How the hell does HE know what you're feeling and going through??No one can know how much someone else is hurting, or what they're feeling at all. But it's true, normals DON'T know what we're going through -- but they think they do. "I've been really exhausted before, and I got better real fast." They don't have a clue what we feel.

I suggest you ask him and anyone else your want support from to get some education on the matter. The Institute of Medicine's finding that they released last month are here: https://www.iom.edu/Reports/2015/ME-CFS.aspx
I'm going to print off the following and go back to my dr., who told me to keep working with my counselor -- yes, I have depression too and THIS IS NOT DEPRESSION.

Here are the links to what I will print off for him:

A PDF called
ME/CFS Treatment Resource Guide
for Practitioners
A. Martin Lerner, M.D., M.A.C.P.
Beaumont Health System
Treatment Center for Chronic Fatigue Syndrome
sorry, I try to get the web address and just keep downloading it. Google is our friend.

http://www.treatmentcenterforcfs.com/energy_index_score/
http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/
http://well.blogs.nytimes.com/2014/11/24/brains-of-people-with-chronic-fatigue-syndrome-offer-clues-about-disorder/
and http://solvecfs.org/mecfs-resources/patient-resources/

I've barely scratched the surface of the first video, but Dr. VanNess show quite clearly that we do not perform as well as normals in an exertion test on the first day, and much worse the next day. Lots of good stuff. Knowledge is power.

Take good care of yourself. Sleep when you need to, for as long as you need to. Don't feel guilty, you've done nothing wrong, despite what others may think of the disease. It IS a real thing.

Stay Strong, honey.

Jack

Hello, dear. It's so nice to meet you. I had a hysterectomy as well and they left the ovaries, but I found that my CFS has been much worse since then. I think you are wise to have an appointment dedicated to this illness. Doctors tend to only deal with one thing per visit. At least that has been my experience. Don't let anyone minimize what you are experiencing. This is a real disease and it can cause significant problems in overall functioning. Many of us are unable to work full-time. I see that you are still working, but have had many setbacks in your job due to this illness. You are held up here. Feel free to post any time. We all try to be very supportive and helpful. Make sure you are resting by lying down. I didn't understand, in the past, that talking on the phone, reading and watching TV don't count as resting. Only lying down can really recharge you. Many blessings to you.

HI There! Welcome to our wonderful group. I am very sorry you are needing to be here, but you are, so that is that. We are all in the same boat and now you have jumped aboard as well. WE are pretty nice bunch here with lots of comfort and as you can see, intelligent and thoughtful suggestions.
When you go to your MD be sure you have documented how you have been feeling, how much you sleep, don't sleep, work lost, all symptoms ( cold all the time, can't concentrate, memory issues, sleep is never enough, can't stand up for very long without feeling dizzy or needing a chair, itching restless legs, etc...) that have popped up around this. Document when and how it began and its progression. This will help you know how to begin to talk about it. Then make a list of questions, some of which you've gained from the responses you've gotten already (ie: complete thyroid panel, ferritine, Vit.D, etc...). Doctors seem to take us more seriously if we have things documented. And having things written down will help you remember the things you need to cover. It's always overwhelming talking to MD's, I find.
As for your husband, have him read some of the literature about CFS/SEID. He may be telling you "It's not that bad" because he is freaked out and doesn't WANT it to be that bad.... or he could just be ignorant as so many people are. That's where the literature comes in handy. There are a tome of websites, as you probably already know, about this disease, so you can show him and tell him about your symptoms, not just that you are really tired. You may even need to make an appointment with him to talk about this! He needs to "get it" so he can help you and understand that you are seriously concerned and have been talking with your MD about it.
You have our blessings and we all wish you really a good experience with your MD on Friday.
Glad you wrote to us and please let us know how it goes for you.
Oh yes, and the mercury/heavy metals testing might be appropriate for you, too. Hang in there!
Sending hope and faith!

Hello and welcome - sorry you need to be here but happy you found us since you do need to be.
Great that you are seeing your doc tomorrow just about this illness.
If I may suggest you write down all your symptoms, because when you are talking things tend to go astray. If you write them down today you can actually hand her the list for your chart.
If you printed out the markers for SEID you could go over them with her as well.
While you are asking for testing - I noted above you are temp sensitive. It might pay to have your adrenals tested.
Like you and triunfadora I also had a partial hystie and haven't been the same since. Truly I think it messes with our hormones more than we feel it does.
There are several good videos for hubby to watch to help him understand. I know one was posted here that was specifically for family. I'll try to find it again. (dang brain fog today)...again, welcome and good luck with your doc tomorrow.

https://www.youtube.com/watch?v=r0w9-eQ_fKQ
This is the video I spoke of...

That's a great video, Nina. Thanks for sharing.

Wow, thank you so much for this incredible outpouring of support! I know the good Lord has led me here b/c you are all so wonderful. My appointment is in about an hour, so I am double-checking everything I am taking with me. I printed off WebMD's article about SEID/CFS. I also had made a list for myself in my appointment reminder that includes what I need to discuss. Printed that, too. Now I'm making another list of details to include thanks to all of you. Lists are the only way I will remember enough to mumble through this appointment!

The good news is that despite my expectations, I am mostly awake today and I think I can keep the ol' neurons firing long enough to talk to her. I've seen this FNP for over 15 years, so she knows my history. All the same, I've been documenting my sleep/wake patterns, daily energy patterns, and what I have been eating.

The hardest part is going to be saying the words "I don't think I can work anymore." I've been almost this bad before, ages and ages ago, when I thought the same thing but couldn't tell her. I wanted her to tell me. Well, I'm old enough now to know that ain't gonna happen. ;) I just hate to admit it. But I have to.

As for hubby, well, he doesn't hear anything that isn't on the same topic as what he's thinking about at the moment. I'll probably have to "make an appointment" with him, too. IOW, ask for a specific time to sit down and talk about just this. Or I'll make another doc appt and drag him along. Either way, I'll just have to focus his attention on the topic. He really is a great guy, just a bit single-minded.

Thanks again. More after I see the doc.

Thanks again for all your support! I just got back from my doc appointment. The first good news is that she confirmed the diagnosis and is experienced in treating it. She's recommended several steps, including a change in medication, which should help. I have to remind myself that this is not a quick-fix process! She is giving me something to better address the pain and the energy, so we'll see how it goes. We have a 30 day follow-up scheduled already, so if it doesn't work, she'll work with me right away. I'm feeling encouraged today. Maybe even enough to force-focus on my work.

One of the things I found concerning, though, is that she says that some of these issues I'm dealing with (hyper-audio shut-down and such) might affect my kids, too. I have seen some evidence of it and I hate it! For the longest time I swore I'd never have kids b/c I grew up with epilepsy and didn't want to pass it on. I just have to remember that I didn't have CFS symptoms when I had the kids. How could I know? But you all know how fun the blame game is. Time for prayer.

Thanks again for the support!

--Jenna

Hi, sweetheart. I'm glad to see your picture up. You seem like a lovely person. I'm glad your doc has some experience with CFS. Many don't. So, it seems you may save yourself some frustration by having a doc who knows how to proceed. Definitely take hubby along to the doctor's. He needs to get that this is real! Maybe hearing a professional say it might help. Part of it is, most certainly, denial. I mean, who wants to admit that things are like this? I have kids too and my CFS has caused them distress at many points. Of course, we feel bad when our children suffer because of our stuff, but it's not your fault. They will grow to be empathic, helpful people because of experiencing what they have. I pray that the Light of God will fill you to overflowing. Much love and blessings.

Thank you so much, triunfadora! Yes, I do need to take hubby with me next time. Last night he got a bug to check under the couch for his lost glasses. That meant moving the coffee table and both sides of the couch. Right before bed. I knew I shouldn't do it, but he gave me his huffy martyr response and guilt brought me into it. Then in trying to put the largest cushion ( about the size of three) back on, he missed and hit me smack in the chest. It knocked the breath out of me and hurt! I could tell he felt bad, so didn't make a big deal. But this morning I almost didn't make it outta bed.