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Paindemandstobefelt

New member
Joined
Apr 12, 2015
Messages
3
Reason
DX FIBRO
Diagnosis
04/2015
Country
US
State
SC
Hello, my name is Lilith Moon. I was diagnosed a week ago, although I've had symptoms for months. I was passed from doctor to doctor all saying they believed it was fibromyalgia but no one helped me or have me medication until I could barley move, walk, or stand. I was asked what it feels like and I have two examples. First, I feel like the tin man in the Wizard of Oz who desperately needs oil, or secondly, think of the worse flu with body aches you ever had and multiply that times ten and no matter what you do it never goes away. I was finally diagnosed with acute fibromyalgia the first week of April. Now I am on hardcore anti-depressants, muscle relaxers, and pain meds. They all help a little bit but I still need my cane everyday, my joints swell and ache almost all the time, especially my ankle and hands.
Thank goodness I have loving, caring parents who convinced me to move home and apply for disability. I feel so useless and sad that just a year ago I was out dancing with my friends and living independently. This illness has taken my life that I knew away. I joined this forum in hopes of meeting others suffering from this illness that could relate to how I am feeling.
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
PA
Hello and welcome to the forum. Please do not give up hope that one day your symptoms will be much less than right now. Although, pain is a constant companion most of my extreme fatigue faded over the years and I am now able to do things that in past years I could not. My heart goes out to you as it seems people of all ages are becoming stricken with fibro and we still have no solid reasoning about what causes it.

Anyways I hope you enjoy the forum and learn something helpful from the many posts and topic's. Please join in asking questions and posting answers to other members. We are glad you found us and look forward to reading your posts. :)
 

im-grouchy-and-bite

Active member
Joined
Apr 6, 2015
Messages
99
Reason
DX FIBRO
Diagnosis
08/1988
Country
US
State
na
Sorry to hear

You're far from useless just learning the new things were good at

You sound like my case you might want to see a specialist rhumatoligist I spent a hour or so and he found most of the debilitating

Pain etc was chronic fatigue

Chronic fatigue chronic pain go with fibromyalgia allot of the time if not on disability insurance it's not always cheep but

The right diagnosis is worth the effort trouble and money to feel better

Good luck best wishes
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Welcome to the family. Life has changed for us all, but we still have a life it's just goi g to be different. It will take u a long time to come to terms with this. Even years. But when u do life because more bearable .your never be pain free , but u will find what works for u and ways to cope.try to take each day as it comes. Right now u need to sort your meds and start to feel better before u worry about the future.its wonderful u have great parents.take there help and rebuild your new life slowly.xx
 

BombayMum

Active member
Joined
Jul 23, 2014
Messages
57
Reason
Other
Diagnosis
00/0000
Country
IN
State
Bombay
Hi,
Welcome to this forum. I joined a few months back and was overwhelmed by the support and affection of the participants here. Hope you will feel the same. There are many threads where we share experiences regarding our courses of treatment and hope that you get helpful tips from there.
wishing you the best!
BombayMum
Ps: don't stop dancing just yet. My doctor prescribed strenuous exercise 3 times a week which included dancing, swimming...
 

moe1959

Very helpful member
Joined
Sep 13, 2014
Messages
708
Reason
Undiagnosed
Diagnosis
09/2014
Country
US
State
wa.
Know you are not alone, I know it is a difficult illness in that not much study has been done and it's such a new, well lastly diagnosed and covered through some ,medical insurance, welcome to the forum, you will laugh,and cry, and experience all kinds of weird symptoms, but like many of us the knowing it's not all made up, and that no ,we are NOT lazy! Is very liberating.
 

ther4u

New member
Joined
Apr 19, 2015
Messages
2
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Ma
Hi, I just joined this forum yesterday , don't despair it does get easier as the years pass. The first was the roughest for me also , its a little frightening to be running around one moment and the next sitting in pain. I have had FM for 12 yrs now and am back to the gym , running my own decorating business and taking care of my 3 children without being snappy . All this did NOT occur till I decided I was not going to let it get the best of me, but I do remember the years of feeling like life was over. IThen I realized and accepted it was over as I once knew it, as for you . How fortunate you are to have loving parents, I was in the middle of a divorce when I was diagnosed and he used it against me in court, stating I was lazy and depressed. My family actually had no idea what was going on and attributed it to my divorce also , so was all alone. In 2003 I had never heard the word Fibromyalgia and neither had the public as a whole so he got the best of me! Hold your head high and always advocate for yourself. One would think if you are crying in pain that attention would be given, unfortunately not with this illness. I was so happy to find this site while googling more information on FM , seems you can let it all out here ! All my best.
 
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GBkrzygrl

Member
Joined
Apr 19, 2015
Messages
18
Reason
DX FIBRO
Diagnosis
05/2000
Country
US
State
Wisconsin
I am also knew to the site. Thank God I haven't had the extreme pain that I have seen people experiencing. Mine is like a nagging headache that won't go away. I have days that kinda suck but like ther4u, I have decided that I won't let it define me. I am in my sixties and have had fibro for 10-12 years. I have noticed a gradual progression and do what I can to keep moving. I have noticed that my pain seems to be worse on weekends. Don't know if it's because I work all week and this is my only real 'down' time. Not. But the things I do are grocery shopping etc and sometimes, that just kicks my butt. Very frustrating.

I think some of the issue with the weekend my be that I AM sitting around more and I am going to try doing some like walking on the treadmill to see if that works. Doesn't help with my arm and shoulder pain but at least it's something.

My husband has had MS for 22 yrs. He had to quit working in 1997 and went through a difficult time when he was first diagnosed. He does a lot of stretching and has taught me some of the stretches. They do help some. I also do lite yoga which helps... just not as consistantly as I would like.

Just don't give up. Find what works for you and know that you are Not alone.

(((BIGHUG)))
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
TX
welcome new people! if i can be of help please friend me and private msg me. or just post your questions so we can all help you.
 

Paindemandstobefelt

New member
Joined
Apr 12, 2015
Messages
3
Reason
DX FIBRO
Diagnosis
04/2015
Country
US
State
SC
Thank you all so much for replying to my post. Since that post the medicines prescribed have helped quite a bit. I'm nowhere near what I was before I got sick, but I do want to continue living now (was seriously suicidal before). Everyday is a challenge but I am not a quitter so I'm fighting daily. I have so much empathy for disabled people now and know I can't take anything for granted. I'm learning to live the best I can with Fibro because life is a beautiful gift. I wish you all a pain-free happy life.
Many Blessings
Lilith Moon
 

Pbeal

New member
Joined
Apr 27, 2015
Messages
3
Reason
DX FIBRO
Diagnosis
01/2012
Country
sa
State
eastern cape
Hi there im also new and I feel ur pain. U are very blessed to have a loving family that supports you. My parents are miles away in another province and I am alone in my battle with a husband who dosint understand or support me. All I can say is you are not alone in this. We might be all over the globe but we are united in the fight against this awful syndrome. U will never be alone
 

Kreol

Member
Joined
Mar 25, 2015
Messages
14
Reason
DX FIBRO
Diagnosis
05/2014
Country
AU
State
Victoria
Hi Lilith, Glad to hear that your meds are working! This forum is great because you feel like you are not alone but more importantly all of us understand what you are going through. Dancing- I really do miss it too, I used to dance professionally, but I know that one day I will be able to dance again :)
 

amtrying

New member
Joined
Apr 30, 2015
Messages
5
Reason
DX FIBRO
Diagnosis
02/2013
Country
CA
State
AB
Hi Lilith, I am also new to this site and very thankful. I was just diagnosed 2 years ago and am still struggling with the loss of energy and mobility I and pain I experience every day. It will take time and like someone else said maybe even years to come to terms and accept this illness.
I know it is so hard but I am glad you found this site. I think the support is so helpful to us all.
We all know what each other is going thru and you are very lucky to have good support in your family. Hugs and I am glad to see you here..
 

jaminhealth

Distinguished member
Joined
Apr 24, 2015
Messages
191
Reason
DX FIBRO
Diagnosis
07/1999
Country
US
State
CA
I'm new to this site but not to FM, had this label since 1999. I will talk forever about the connection to Thyroid and Fibro Pain and Pain in general.

A great site on this is thyroid mom and I know we can't post sites but you can use those words to find her site...she talks about Fibro and Pain and Thyroid....

I went over 10 yrs not getting the thyroid HELP I needed and then ended up with the FM diagnosed in 1999......do resarch and don't let thyroid slip away, it's a BIG piece of the puzzle. Take care.... J
 

ther4u

New member
Joined
Apr 19, 2015
Messages
2
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Ma
Hello Jaminhelath ,
Love your username . I too was diagnosed in 1999 with FM , however I had a thyroid issue and did not know it for close to 3 years . It was the key to me feelig so much better ! Mine was under active ( Hyperthyroidism ) , I was so tired and could not put a clear full sentence together. The brain fog was horrible and quite embarrassing. My general doctor would do standard blood work each year and say "looks great " you are very healthy , chronic fatigue goes hand in hand with fibromyalgia, this is how it feels and to do my best .
WRONG! Finally went to an endocrinologist , there is where I found out just bcuz your TSH # looks normal , means Nothing ! This doctor got me on the road to better health and I feel so blessed. Without a fully functioning Thyroid your body can not work properly in any area . Adrenal fatigue is ramped and yet gets ignored on a daily basis. Great words of wisdom by you ! All my best .
 
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