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suadela

Active member
Joined
Mar 12, 2013
Messages
31
Diagnosis
02/2013
Country
US
State
KY
Hello!
(I posted part of this in the New Members area also)
I am honestly not sure what I am doing on here, hoping for support and to become closer to people who are suffering from the same things I am. This is sort of long, like a novel, so, I am sorry for that!

My name is Melissa, I am a 27 yr old single mom from KY. I have had pain, all over, for several years. It began soon after my C-Section in 2007. Thyroid tests came back abnormal, under-active thyroid. I began taking Synthroid to stabilize that. Some relief came. Within a year, pain and anxiety and severe depression started to sink in. They tested my thyroid levels again, it was normal due to the medicine. My Dr sent me to a Psychiatrist. They kept telling me it was anxiety and it was all in my head. That I was not in pain, I just did not know how to deal with the stress of every day life. Stress? What stress? I might be a single mom, but I make good money (no financial stress), have a loving fiance that has taken my daughter as his own, a supporting family that helps with the care of my daughter, and friends and family that make my life enjoyable. They eventually admitted me to a psychiatric hospital to begin medication for the "anxiety" because I sort of went off on my Psychiatrist(evidently not a good idea). I told her that the pain in my neck and all over my body was getting so bad that if they didnt help it get better I was going to cut my head off and each part of my body that hurt... mistake, I know... BUT that made her put me in the Psych ward.. They started Celexa, Cymbalta, Valium, and Nuerontin. I started to feel a little better, but not much. The part that sucked the most was being told its all in my head and I am crazy.
After being on those medications for about a year, the pain was still present, ever changing, and no real pattern to why when or where it happened. So, tons of clear ct scans/xrays/blood tests/specialists/massages/physical therapy visits later, the Dr hints at the possibility of Fibro, but she does not "believe in the disorder, and does not treat it as such."
That prompted me to do some research. OMG, This explains EVERYTHING I have gone through over the last 5 years... So, after a Dr. switch, he reviewed my medical history, did a physical exam, and told me he believes it is Fibromyalgia. He has decided to change the Cymbalta to Savella and see how that helps... It is sort of a relief to know there is a name and other people to sympathize with now, and that its not all just "in my head." To be honest, sometimes the pain makes me feel like I'm crazy!

Well, if you made it through my book, thank you!
I wrote all of that to ask the question- How do I help my family members, specifically my husband to be, to cope with the changes and issues that we will continue to face over the years?

Also, my biggest question, is related to pregnancy and fibro. Has it been studied, or have any of you yourselves been through it? Do things change due to the hormones?
Any help you can have is great!

Melissa
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
I can not help you with the pregnancy part, as I was not able to have children. But I will say that hormones that in pregnancy, so I have been told, emotions can go haywire. One minute your happy, and the next your crying for no reason. So that part could play a role with your fibro, making you a bit stressed or depressed, and some anxiety.

I went through most of what you went through, except no psych ward. I was told constantly it was all in my head and what a great imagination I had. My husband thought I was crazy and he was not supportive or caring during the time of my diagnosis of the disease. We ended up getting divorced. So how to help with your husband and his coping.

A lot is going to rely on your strengths and how well you can cope. Try not to moan and groan about every little worry that comes along. Save him from worrying constantly. Share your feelings and your emotions and be strong for him. Most men can not stand to see a woman cry. It makes them feel defeated in trying to be your support system. We women have deep emotions that give us the edge when someone else is in pain or suffering heartache. We nurture our children and our family, and our dear husband with love and a solid protection. And when we are ill it is hard for us to maintain that inner strength that holds everything together. So we try to control everything ourselves and often block others from seeing or feeling our pain. And by this control factor we lose bigtime. Give that control to your husband. Don't block him out. Let him be the one who nutures you.

Keep communication lines open. Try not to worry. Give yourself time to accept that you are not, nor were you ever crazy. Your doctor's were. lol
Try to remain self confident. Be open to suggestions on coping and lifestyle changes. Read these forum topic's all the questions and answers. Feel free to ask anything and we will do our best to help. Try to be happy and remain positive. Count me as a fibro-friend. It will be okay. :)
 

twiztc

Senior member
Joined
Feb 3, 2013
Messages
244
Diagnosis
08/2000
Country
CA
State
Ontario
I'm really not much help to you at all.
Pregnancy ..sorry unable to want children.
As for partner. My first was totally pathetic and too wrapped up in his own disabilities and running me into the ground to give a shit. I got rid of him.
My husband now knew I was defective from the very start and is wonderfully supportive even if he doesn't understand me or this wacked out condition.
All I can suggest as regards to your partner is make sure he is included in the process. Maybe if feasable have him go with you to a doctors session so he can see first hand what is involved. I had my hubby with me when I saw the back specialist and the penny dropped with him how much pain I was dealing with and she touched on the Fibro issue too which was a bit of an eye opener for him also. Comes in handy having a second pair of ears around on those Fibro fog days when your memory is fuzzy too.
I didnt get sent to psych Ward but I was for years treated as a bit nutty sent for weeks and weeks of councelling and put on different anti depressives. Of course I was friiging depressed. I was in pain and the stupid doctors wouldn't treat me!
Over ten years and I'm still learning how to cope. It's different for everybody. There is no step by step plan. Just when you think you got it figured out things change and you have to adapt.
 

Yatte

Active member
Joined
Mar 1, 2013
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State
Gauteng
A pregnancy can go both ways, the hormones can make you feel better or it can make you feel worse. I had it bad, as the hormones made my IBS flare constantly. Consult your doctor first if you plan on getting pregnant as some of the medication can be harmful to a baby. My sister have to stop some of her medication for a year before she can get pregnant.

As for the husband to be, share your experiences, include him in your tests and all the rest. Allow him to help and support you if that is what he wants, being stubborn does not help a relationship or a marriage. It is difficult to share your burden with someone, but it also helps you to have someone around that know these things and that can carry you trough the tough times.
 

suadela

Active member
Joined
Mar 12, 2013
Messages
31
Diagnosis
02/2013
Country
US
State
KY
Thank you everyone for taking the time to read my story!
My fiance and I have been working very hard at keeping great communication. He is very understanding, I just have that mentality that it is not his problem so I shouldn't lay it out for him.

I didn't even think about the medications, so that is something I will need to contact my Dr about before we start tying. Thank you for bringing that point up!


An issue that my fiance and I have been having is know what is Fibro and what is not. When I have a new pain or new discomfort that I haven't experienced before, how do you know if it is your Fibro or something serious(or even worse, a side effect of a med)? Is that just something that comes with time? I am having a hard time not contacting my Dr frequently because of new pains. My anxiety starts to flare up if my valium or Nuerontin don't even sugar coat the pain... So, with the pain, then the anxiety, my mind goes crazy all over the place. My fiance is very focused, as he is constantly trying to calm me down and help make me comfortable at the same time.
This is all so confusing...
I think today I am going to do some research on what research is being done on Fibro. I'd like a guesstimate on how long we will all have to live in pain of the unknown. I guess it is kind of like cancer though, they dont know completely how to cure it. But, they do know more about cancer than they do about Fibro...
Thanks again to everyone for listening!
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
You might want to consider talking with a counseler. Some towns have places for mental health, that the cost is sliding scale. It might help to talk with someone not related to you, to give you some added moral support and inner direction. I was the same as you in the begining. Every pain big or small became something to worry about. Most times it is nothing serious. My family doctor once told me that if the pain is on the left side don't worry there is nothing important over there. lol I think he just wanted me to lighten up and not worry so much. Anyways, for a long time I fought against simple counseling because doing it made me think everyone would think I was crazy. But in the long run I realized that it was only hurting me and those that I loved, by worrying all the time.

Most of those little pains are muscle spasms. They can be little or huge. One night while laying in bed I had a huge one ripple across my chest so severe I thought I was having a heart attacked. It hurt bad then went away. Other times my chest pain was diagnosised as a condition that causes inflamation in the muscles between the ribs. It is very painful, but not life threating.

Sometimes if pain is really bad go see your family doctor, just in case. Otherwise try some of the suggestions listed in this forum under the pain topic's. Hope you feel better soon. :)

Not to say a bit of worry is a bad thing, but in the begining fibro can be wacky. I saw things that were not really there and my ability to cope with all the odd feelings was gone. Most of the people I talked with did not understand me as they had not clue what fibro was, where today more people are informed.
 

SulaBlue

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Joined
Mar 11, 2013
Messages
182
Diagnosis
00/0000
Country
US
State
TX
Ouch! Hoping for the best!
 

Libragirl67

Active member
Joined
Mar 14, 2013
Messages
82
Diagnosis
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Country
us
State
michigan
I too suffer from Hypothroid disease. And I take a high dose of synthroid. I also have panic-attacks. I was told it is completely in my head and to pretty much just stop being a drama queen. Some conditions are not seen on the outside. But that does not make them any less real. Do not listen to people who belittle you or don't understand. I think being on this site is a great decision. And I am so glad that they finally diagnosed you and are helping you now. As far as pregnancy, I know there are alot of hormonal changes that happen. But not sure how it affects fibro. Never stop believing in yourself.
 

ponooch52

Member
Joined
Mar 22, 2013
Messages
12
Diagnosis
11/2011
Country
CA
State
Ontario
My road to a fibro diagnosis was way different than yours... I was first diagnosed with Rheumatoid Arthritis, then sent to a rheumatologist who finally diagnosed the fibro. A girlfriend of mine gave me the best advice ever after her years of dealing with the disease. She said.. "You are an A type personality (a doer, an organizer etc..) you will need to learn your limits & learn your new "normal". Learn to do what you can when you can & learn to stop when you know you should"! Best advise I ever got! I am still not on any medication except for Co-Meloxicam (an anti inflammatory) & I am now taking vitamins as suggested by my pharmacist (not my doctor!) Omega 3, V-D, V-B12, Calcium, Magnesium & Caltrate Plus (I am 60 years young & think I need that as well). I ache every day & it moves from one spot to another daily. I never know if it's the RA or the fibro, but since taking the vitamins & learning my limits I have noticed no excruciating flare ups that used to send me to emergency every couple of months! My husband doesn't really understand my disease, but he knows I have a high pain threshold & wouldn't complain unless it was serious... so he does his best to understand. There are some very good sites online that can explain more about how to live with fibro, read all you can! And keep moving (altho it's painful)... walking, swimming (we have our own pool & a jacuzzi tub!), low impact yoga. Experiment with hot or cold compresses to find out what works for you... as what works for one won't do anything for someone else. Same with medications! I have percocets for when I can't stand an excruciating flare up... but taken only when I really need it! My problem is money... I will never work again so have applied for early CPP (Pension in Canada), but can't get any doctor to sign my CPP disability papers as they say they can't prove "severe and prolonged" as required in our system! I just don't understand that as RA is a severe and prolonged and incurable disease! Anyway, good luck! Learn to read your body & learn your physical limits!
 

dcloutier

Member
Joined
Mar 18, 2013
Messages
22
Diagnosis
10/2005
Country
US
State
IL
Hi suadela and welcome! First off, I'm so sorry that you're going through all this, but hopefully you're on the road to getting it all to a managable level. To answer your question as to how to talk to family members to help them understand/deal with what you're going through, I used this letter. Explaining Fibromyalgia

I struggled for a very long time with a way to explain to my family what was going on and how to help me. When I found this letter, I cried because it was like every word I'd been struggling to find was right here. It helped my family to understand a lot better, as well.

As far as pregnancy, I just had my second little one 6 weeks ago and both pregnancies had a different and unique effect on my fibromyalgia. With my son (my first), I actually felt a little better. Besides normal pregnancy complaints, I felt better than I had in years. It all came back pretty quickly after I gave birth and when I got pregnant with my daughter, my fibro definitely got a lot worse and has yet to even back out since I've given birth. The hormones definitely play into it, but I don't know how. I've just accepted it and learned to ride it out. I had fibro before I was pregnant though, so I'm not sure if that would make a difference or not.

Hope you'll find some help here in the forum and hope I've managed to help a little bit. We all know how overwhelming it can be at first. Don't worry, you'll get it sorted out. It's a lot to have thrown at you, especially after dealing with so many people telling you that it was in your head for so long.
 

mudrock

Active member
Joined
Mar 20, 2013
Messages
36
Diagnosis
00/0000
Country
US
State
south carolina
I have a friend with fibromyalgia, she had a natural birth. Since having her daughter, her fibromyalgia symptoms improved massively and she used to be on crutches most time or unable to get of bed before fell pregnant.
 
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