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Newly diagnosed and feeling down
8 Replies
TiredTab38 - March 23

Hello Everyone. I just feel blessed to have found people that are going through this, I sometimes feel so alone. I was just diagnosed with FM a month ago, I have had the symptoms for the past year or two. I'm married and have one child, an 8 year old energetic son who has autism. My husband is very understanding and comforting. But, I do not think he fully understands what FM is and how I feel daily. He never complains that the house is dirty, or if I can't make dinner. It's all very new to him. I've sent him the link here to learn more about FM. I'm currently not on any medications for FM, my doctor wants to put me on Savella. Today, I'm feeling so scary dizzy and so foggy minded that I'm getting depressed. I feel very sad and all I want to do is cry over nothing... I just wish I'd get out of this funk. My house is a mess and I can't keep up, I usually have a spotless house. It's hard enough trying to keep up with my son who has autism, Now with FM it's really hard. Although my husband always tells me that I'm an awesome wife, I sometimes feel like I'm not. I can't clean like I used to and be a supermom. I feel like my much needed energy has been stolen from me. I'm tired of sleeping 8 hours straight and waking up so exhausted that I can almost not get out of bed. I cannot find anything to help my energy. I'm thinking of trying accupuncture, anyone here try it? Does it really help?

My sister was also diagnosed with FM a month before my diagnosis. I have her support, but we have so many different symptoms. I'm feeling today like I'm worthless... I'm so tired. So, tired of people like my mother in-law who just do not understand. She got angry today because I couldn't take her shopping. She once told me when I was first diagnosed "It's only muscle pain, You just have to deal with it". She is a self diagnoser and says that she has had it (FM) since she was a teen, and it turned into the Lupus that she has now. She also told my husband that FM is no big deal. Ha! Right... "No Big Deal". Sorry to ramble on... I really have nobody to talk to about this nor vent to. Thank you for reading this far! ;o) I just feel extreme sadness and I'm fed up with FM!

Tab

 

llcsmom - March 24

Hi Tab,

A few things you said are the same with my 12 year old daughter who has FM. She can sleep for 12 hours and feel exhausted. She started having insomnia problems about 6 months ago. Some nights she can stay asleep, other nights she can't fall asleep for 1-2 hours, or she wakes up several times a night.
She feels dizzy and "weak" (and nauseated) alot of the time. Yesterday, she couldn't "see right" in her class--says she couldn't focus on any words on the page. Needless to say, she misses alot of school.
She tried accupunture in the beginning of her diagnosis 2 years ago--didn't help her and it was too painful (so she quit)--but she was 11 yo--different perspective than an adult. So, you may find it helpful.
We've tried several other "alternative" things--aromatherapy oil, soaking in a tub with epsom salts, acculight--laser light focused on accupuncture spots of the body, crystals, lidocaine patches,etc. Yeah, we both get down about her situation sometimes (you said you get depressed)but we also try to put it in perspective and hope she can have a relatively normal life! She talks to a counselor, and I think that helps a little.
Take care,
Dawn

 

jillywizz - April 1

Hey your not on your own iv been a sufferer since in my early twenties im 41 now and have 2 sons age 19 and 16. Dont worry about your house i stopped stressing a long time ago the more u stress about things the worse u make the fm. Ill tell u one thing i found very helpful i went to a reiki group and did meditation and relaxation and reiki of course i became a reiki healer myself too and it was a god send. It doesnt cost much about £3 to go to a group and you get such a lot out of it everyone is so nice and so supportive at the group its surprising how much it helped me i also suffer with depression so iv got things double barrel but out of everything i ever tried thats one thing that works u just have to make the effort to go i havent been for ages it will take me ages now to get back into it but once i do ill really enjoy it and get much from it. Keep your chin up if u want to e-mail me u r very welcome to.
jillywizz

 

shanneningan - April 7

Wow, That must be so difficult for you...:( I am trying to find out more about this blasted illness that has robbed me of everything. I feel like I am completely crazy and no one I know understand including some drs I have seen...Do you know of the best place for me to get some advice on this before they take me away PLEASE HELP...
Shannenigan

 

p767 - April 7

Hi TiredTab38
I'm sorry to hear about your diagnose. Like you I'm so fed up with FM!!! You're not alone unfortunately many of us are out here suffering with FM. . .

I've been suffering since I was a child, then in my early twenties I was diagnosed with Chroncic Fatigue and Epstein Barr Virus. When I turned 39 I was diagnosed with FM..... with FM, lack of sleep and pain combined, has led me to depression and anxiety. I've been in and out of hospitals for depression. I just joined this online website. I'd like to learn how others handle this awful FM. What meds have they tired, what alternative medicines have they tired. What type of specialist is best to see. I open for suggestions.

Hang in there, somehow, we will discover something that'll work.

 

axxie - April 8

I'll give me two cents, I have chronic fatigue syndrome, trigger points and FMs. Some days are good and some days are bad. I don't care what the house looks like, but I seem manage to tidy it once a week. If I do the main rooms, I don't care how long I sleep in my bed sheets and if the laundry piles up then I ask my 16year old to wash the clothes, I showed her how to use it and how much detergen in etc. and she will do it if I ask her. The kids are old enough to do the laundry and pick up around the house and I just tell them I can't do it I'm too tired and I want you to do it, I keep remind them to do it and they are pretty good about it.

Doctors, oh I think all of us can write a book about how they treat us and the ones who don't believe in it. I've had my share and I just went from one doctor to another and one day I was so fed up, that when I went and saw this doctor I started crying. She kept seeing me every week and then she finally got me to realize I was depressed and that I should think about taking medication. I was happy see she was willing to give me something and I told her that I had saw this commercial about Cymbalta (not sure if you are in the US or Canada) but if you happen to be in the UK there's another name for it, just do a search and you'll be able to find the name for it.
She said she would let me try it, and she gave me a supply of them and I tried it and I instantly felt better, but was sleeping more and I was nauseated, after a few months, it took away my anxiety attack and it help me with the pain. She suggested that I take a multivitamin every morning and that I needed to buy vitamin that only contain B's in it, to take those with my multivitamin. Well I get that extra boost to do a little laundry and I'm in a better mood. I find I focus better. I started with two multivitamin and added the b6, and the b12 twice a day, after a week, I was able to cut it down to one multivitamin in the morning and my b's in the morning as well and it gives me that extra boost that I need to function and I feel better also.
You can try it, it will only cost you the vitamins and it might do a lot of good.
Keep your chin up, and don't sweat the small stuff, keep on going, and if you happen to hit another doctor that doesn't believe in it, just ask him how he would feel it happens to him. Then you'd be in the same position as I'm in. I always bring a family member with me, and it gives me courage and I print the stuff I tell them this is what is happening to my body, please help me, cause I'm having anxiety attack and I'm depressed and someone doesn't help me I might just shoot myself. Doctor's do help when you say things like that.
Keep writing and telling us how you are feeling and what you did to take charge of your health. We might be able to help each other.

Do you live in the US and do you have insurance, do you live in Canada, then show up at the hospital they will help you, if you are in the UK, show up again at the emergency it helps because they treat more symptoms, they might be able to help you more.

 

LalaNZ - April 29

wow. well this is my first post and i hate to say it but i am so glad that i have found someone....anyone for that matter that feels the pain and frustration of this burden. I have just been diognosed recently with fm and have yet to find out what my serios autoimmune disese is. I have just lost my job because of this no one seems to understand what its like to somedays not be able to get out of bed and when it reaches the stage that even your closest friends are starting to tell you its all in your head, is when you start to wonder if there right....i just found this web site. to see there is others out there even tho so far away, is the best thing i could ever imagine.

 

belle1329 - April 29

Hi
I must admire you fortrying to keep up with your son who has autism that must be very hard.
I was thinking of accupunture, let me know if you do and if it helps.
My husband is a supporter, but I too feel, he really does not understand and I feel I dont do enough anymore and get the guilts,my house used to be spotless too, but we have to stop stressing because stress does make it worse. Even though your symptoms are different, you must have your sister for support, keep in tuch when ever you can. I dont have anyone either, My girls 25, and 28 but both dont really understand as I was always so active with them. Wish I had my sister, she died of bone cancer at age 37,mom alzheimers at 68 died at 79. We have pain but I tell myself its nothing like the pain my sister had.

as p767 said here in a posting...
Hang in there, somehow, we will discover something that'll work...
and we are always here for you :-)

 

txplowgirl - May 4

Tab,
First off, quit feeling guilty. I know that's easier said than done but the more you worry and stress the worse your fm will flare up. Having an autistic child will be stressful enough.
Ignore your mil. Try to help your husband to understand, if you can try to find a support group in your area where he can talk to the husbands.
As for medications. I can't take the prescrips, because of so many side effects. You are not gonna like this but a lot of the pain and fatigue you experience is due to allergies to what you eat. Sugar, aspartame, red meat, dairy products, nightshade vegetables (potatoes, tomatoes, etc.) Gluten, wheat, MSG.
Try to cut some of those out. White willow bark for pain, 5-HTP will help with depression, melatonin will help with sleep, these 2 together will help with the pain also.
That's just a little of what I have been able to take.
The crazy thing about this fm is that not all sufferers will be able to do the same things. Some people the prescrips work. Like me I can drink milk, but can't eat the other dairy products. It is trial and error, you have to research then try different methods and see what works for you.
Don't give up and join support groups and hang in there.
I have had this since I was 8 years old. I can remember hurting so bad and being so tired that I would find a place to sleep outside when I was told to go play outside. Finally diagnosed 3 months ago.
I'll go for now, but here is a light hug from me and hope you have a pain free day.

 

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