New to the forum?

Sign Up Here!


Already a member?
Please login below.





Forgot your password?
Need Help?  
I'm new & want to introduce myself....
2 Replies
Stacey373 - June 10

Hello everyone...I've been reading the posts on here for about 2 weeks and I want to thank you all for helping me to understand this disease and feel so much better about myself.

I'm 37 years old, been married for 11 years to a wonderful man who I am so thankful he can put up with me, and have 3 beautiful kids. When I originally got on here looking for information, support groups, validation, etc I was in a very bad way (emotionally).

After years of going to doctors and being told it was all in my head (having pain from depression, write in a journal and you'll feel better, and even being told I had the "Yuppie Syndrome" which meant I was stressed out by "trying to keep up with the Jone's"....what a joke!) I finally found a small town doctor who really seemed to care about me and was at least willing to try any thing to help me feel better. After a couple of years seeing her, I was diagnosed with Fibromyalgia which was about 1 1/2 years ago. I basically diagnosed myself and since we had exhausted all other options and I had a vitamin D deficiency, she agreed with me. I originally was so desperate to get help for my constant headaches and migraines and that is still my primary problem that my doctor is focusing on. I didn't want to mention all my other problems because I still felt like it was all "in my head" and I didn't want her to think I was a hypochondriac.

The first few months after being diagnosed, I "thought" I was dealing with it, setting boundaries on how much I could do, experimenting with what makes me feel worse and better, etc. Then I think we all just "forgot" about it and it was never talked about again. I really think my family thought "Yay, we finally know what's wrong, now let's fix it and be done with it". of course, it doesn't work that way...so let's just not talk about it and maybe it will go away. The last few months I have been slowly spiraling down (physically & emotionally) I was trying to be "Super Mom" so the more I hurt, the more pain pills I would take, the more I pushed myself, the more pain and headaches...and it was just one big circle of hell I was putting myself through.

About 2 months ago my doctor started taking me off the pain meds (saying each month I would get less until eventually I was completely off of them). And all of a sudden I started hearing the same crap...it's all in your head, your depressed, write in a journal, change is difficult but it has to be done, etc etc etc) And suddenly my headaches were blamed on stress and tension and "rebound headaches" from the pain pills and if I do all these things she's telling me to do, I will be all better.

And that was when I hit bottom! I just wanted to scream at her "I have Fibromyalgia! These things aren't going to go away if I write in a journal!"

I actually think this was a good thing....I totally believe everything happens for a reason...sometimes you just have to look harder for the reason. And that's when I became "pro-active" like everyone says to do. I started researching and I've found several reasons for my constant debilitating headaches. I've always said it's not just ONE thing causing them...it's several....and now that I've found some conditions that literally describe me to a T...I'm going to my doctor with all the research.

My other "pro-active" thing I'm doing is trying not to be so hard on myself and trying to inform my family of what I'm going through. I'm tired of everyone looking at me like I'm lazy, I'm making excuses, and yes, even that it's "all in my head"(errrr). It breaks my heart to tell my kids we have to cancel plans because I just can't do it today. And I swear I don't get headaches so bad that I'm in bed for several days on PURPOSE! Although I have come to the realization that my mother will NEVER understand what I'm going through. She will always be WORSE (even suddenly saying now that she too has FMS without going to the doctor or needing ANY kind of medication to help her with it!) I have to assume everyone has someone like that in their lives...maybe not to that extent...but even a little of that would drive you nuts!

Anyways...I wanted to introduce myself to you all and I'm hoping that by telling just a little of my story I can help someone else going through this.

I do have one question...even though you know "why" you are having all these problems, each day I wake up and there's ALWAYS something wrong with me..."What's it gonna be today?" My body feels like I've got the flu, or so tired I can't move, or I've got a horrible headache, or my back and legs are killing me, or it seems like a hundred other things that I'm sure everyone deals with except it's to the "Extreme times 10"(and sometimes it's all of the above)...do you ever think that maybe it IS all in your head? I have to assume that if you really are a hypochondriac or just a "big baby" and it's really not as bad as you think....would you really KNOW? I've been told so many times "well I have a high pain tolerance and you have a low one, so that's why you "think" it's THAT bad" REALLY?!? Because I'm pretty sure if you spent a week or even a day in my body...you wouldn't think I have a low pain tolerance and I don't even think you'd be able to deal with half of what I do on a constant basis!

Okay...I'm done rambling. I have a feeling I'm going to be on here ALOT! Just let me know if you all get tired of hearing me complain, vent, ramble on and on...

Thank You All for listening to me and, again, Thank You for all the help you've already given me these past couple of weeks.

Stacey :o)

 

Fantod - June 10

Hi Stacey - Welcome to the group!

Having problems with family members and friends is very common. Pain is subjective. For some people, if they can not see it (like a leg cast) it must not exist.

There are a couple of things that you can do if you don't want to share this site. Go to the National Arthitis Foundation website and use the "search" function to find the section on Fibromyalgia (FMS). You can send people a link. You can also go on Amazon and purchase "Fibromyalgia for Dummies" which has good basic information likie the other books in the dummies series. Read it and pass it around. Fibromyalgia is recognised by the National Arthitis Foundation, The Centers for Disease Control and the World Health Organization.

There are a lot of doctors out there who don't think FMS exists or simply don't want to deal with it. Your doctor sounds like one of them. If you have not tried Cymbalata, Savella or Lyrica for FMS than your health issues are not being managed properly. You can call your local hospital physician referral service and ask them for a recommendation to a rheumotologist and/or a pain specialist (I have both) with an interest in FMS.

I agree with you that everyday is different with FMS. I never know how I am going to feel or if I will actually accomplish anything that day. It is not all in my head and I never thought that it was at any time. I have a close friend with FMS; I already knew what I had when I was diagnosed.

My "plan" every day is to get showered and dressed even if it takes me all day to get there. Anything that happens past that point is gravy. Learn to be grateful for anything that you can accomplish no matter how piddling as opposed to dwelling on the losses. Life is a lot more tolerable that way.

Take care.

 

Stacey373 - June 10

Hi Fantod! Thank you for replying. you seem to be the local "expert" on here and I appreciate any advice you have.

I understand that pain is subjective. at one point last week I thought if I pretended my back was out (which happens alot for real) and my doctor "saw" it, then her and everyone would believe that I'm REALLY in pain. Of course, I could NEVER pretend or "fake it", it was just a passing thought when I was feeling sorry for myself during my "break down" last week. Instead I decided to "arm" myself with information!

Right now I don't have insurance, so finding a new doctor is not an option for me. My husband is in the union, been laid-off for over a year now, and we lost our health insurance in January. I've been paying cash to see my doctor every 2 months and to get my prescriptions. I also have a blood disorder/disease and I can't take any kind of medication that thins the blood. I was initially told that the normal FMS meds was not an option for me either.

Honestly...I don't want my mom to know the symptoms of FMS. that may sound crazy, but the more she knows, the more she can say she has it too. She would even go to the point of lying and saying she was diagnosed with it and taking the meds for it. She's 66 years old and has all the aches and pains that go with it...she just doesn't understand how severe the aches and pains are with FMS. She says "I have it too and I can still do everything, why can't you?" I may change my mind later once I've really "come to terms" with all of this. but right now I don't want to argue with her and I don't want the headache of her making this into a "competition". I realize she is just trying to in-validate me and usually I can shrug it off.

I have to say, I started reading some of the posts on here to my husband and he is really trying to understand and be supportive. I just hope we don't end up going back to "don't talk about it and it will go away"

After my "break down" last week, I have to say I've been really trying to be positive! I'm feeling good about all of this mentally and I can't wait to talk to my doctor at my next appt about all the information I've learned. I think along with the FMS, I'm also dealing with some of the associated conditions, so I'm hoping we can start treating all of this.

I was just wondering if any of you ever sometimes felt like it's in your head. I guess after hearing that for SO MANY years, it's a little harder to get over that "mind hurdle".

I'm not sure if you saw...I asked a question in the "drugs" section as a reply to a post about steroids. If you or anyone reading this could take a look at that and maybe give me your advice/opinion, I'd really appreciate it.

Thanks, Stacey :o)

 

Message:


You must log in to reply.

Are you New to the forum? Sign Up Here! Already a member? Please login below.

Forgot your password?
Need Help?
Ask a Question